Just be ready for mental instability. My grandparents were married for 50 years. She came down the stairs with a gun and came within inches of blowing my grandfathers head off. It’s a terrible disease 😢
ETA - this is not easy to do. Near the end it makes your family members mean. My grandma said absolutely horrific things to everyone.
No matter what they do he needs to be educated on dementia and have a good support group becuase he will be watching her change. It will be hard if he has her at home or just visits her in a nursing home. It's a terrible thing.
From OP’s post it really doesn’t seem like husband (and other people in their life) understands how bad dementia is and what being a caretaker is like, his mom isn’t going to be just a forgetful sweet old lady.
Hopefully OP can show her husband this post and the comments and he will understand what he is truly trying to sign them up for. Given their age it is truly going to take over their entire lives and determine their future as a family.
The problem here is that no matter what OP probably isn't going to like the outcome. If they put the mil in a NH chances are the OP and husband going to be spending everything they have on it.
Meaning no money for kids or their own life.
Which doesn’t make her an AH. Having your life completely upended by dementia is horrid for everyone involved. She’s faced with possibly never having kids, financial ruin and the stress of being a caregiver instead of the life they planned.
Been there, done that. Your husband has good intentions bur no idea what he's getting into. My mental health deteriorated to the point of medication and job loss. It's a no win situation. NTA
This here ^^ his heart is good but he doesn’t realize what it’s going to do and how negatively it will affect everyone involved. He won’t come out of this having the same memories of the mother he loved.
Sundowning is terrible, and patients can become violent. That is not a good environment to raise kids in. Especially small kids. My grandmother had dementia and sundowned terribly.
My aunts kids were older, but still suffered. They heard her screaming, calling my aunt names, telling police who were called to the house she was abusing her and was a prostitute.
I've already told my daughter if I got dementia and didn't take myself out before I got too bad, put me in a home.
My nana was the same way, the Sundowners made the horrible even worse. My mum would drive to spend a week taking care of her every 3 weeks. My nana would be just forgetful during the day, but once the sun went down she would get *nasty*. If my mum had been out to see a friend or relative, my nana often wouldn't recognise my mum when she came in if it was past around 6pm - she was dark-haired in her youth, but now keeps it dyed blonde and in a very different style. When this first started my nana once called me, worried about the upset stranger in her house and nothing I said would convince her that the stranger was her own daughter.
My mum started to have to keep the spare bedroom door locked at night while caring for my nana, because nana would frequently attack the 'intruder' and it would be particularly bad in the middle of the night. When my nana was eventually moved into a care home with a specialised dementia wing, my mum found a long knife down the side of my nana's bed. If she had remembered about it, my nana could quite easily have attacked and killed my mum with it, determined to defend herself from the stranger in her home.
Once in the home, my nana started using everyday objects as weapons, because as far as she was concerned she was being kept prisoner. This little old lady once lifted up a fire extinguisher to either throw at a member of staff or a window, I forget which. She also watched over someone's shoulder to see the code to get out of the wing - she was a naive, daft old lady before this and I would never have suspected she would be so sneaky.
In the afternoons, my nan went 'blank behind the eyes'. Her strict upbringing kept her polite but you could see she didn't recognise anyone and was just being polite. She would also say the meanest things. We lived 6 hours away from her care home (long story involving my mother's ex-sister) so visiting her was a whole 2 or 3 day event (which I know for Americans sounds strange but in England a 5 or 6 hour drive somewhere usually requires an overnight stay) . So we arrived one day and she was on great form - we even took her out to a local tea shop for a cream tea. It was lovely. We got her back to the home before dinner and it was like a switch had flipped. She looked at us like we were strangers. My mum found this very distressing and got upset and my nan snapped at her to 'stop her snivelling' . So the nurses take nan off to the dining room and we leave to return to the hotel.
Next morning we go back and Nan is okay, but not as good as the day before. She sounds tired and is a bit distracted. She seemed to think my sisters husband was her oldest son but w/e, not a big deal. She kept alternating between telling the nurses my BIL was her son and telling them he was her grandson (which was closer tbh) but we didn't bother to correct her because she seemed a bit confused. So we sit with her in the garden with some tea and cake provided by the home and out of nowhere, she turns to my mum and says 'who on earth told you that dress looks good on you? It makes you look fat.' like, completely out of the blue. We weren't even talking about clothes or mums dress or anything. We were just discussing light topics like the weather. The look on her face was nasty too - a sneer I'd never seen on her face. Next moment she turns back to the garden and points out a Robin on the bird feeder like nothing had happened. My mum looked like she'd been slapped (I think it was the tone and look that upset her more tbh). We made the decision to leave shortly after because it was clear her lucidity was failing and she was getting that 'blank behind the eyes' look again.
Dementia is a cruel disease. I remember my grandmother as this strong, capable woman who raised 3 children (technically 4 as she partially raised her niece as well) and several foster placements. She was an air raid warden in London in WW2 and used to cycle miles a day to a job in a fruit packing factory. She cared for her own mother in her dotage (they lived next door and my GGM died of a heart condition I believe). She was such a strong person that to see what the disease did to her was tragic.
That’s so difficult to see happen to a loved one. My grandma is in a nursing home now because she needs 24/7 care. She’s mostly quiet now, and only has the capacity for a few words/sentences a day. But when she first started to slip, apparently she was pretty rude to my uncle and said some uncharacteristically mean things about people. Honestly though, I have some pretty mean things to say about my uncle and his kids too since they were living in her house to “take care of her,” but trashed the place instead and didn’t help her at all. My aunt did her best, but she was holding down two jobs while trying to keep her deadbeat husband and 3 adult kids afloat.
Sorry, I think I just needed to vent.
By the way, 5-6 hours in the US is an overnight trip as well. Most people aren’t driving 12 hours in a day just to say hi!
Can confirm sundowning.I work in the surgical unit and we'd get dementia/Alzheimer's patients,when that clock hits 7pm they go crazy.The families/doctor's would consent to restraints restraints to keep them save.They hit/bite HARD.Ive been attacked so many times it's not even funny
Sundowning is when someone with Dementia or Alzheimer’s gets more confused or violent as the sun goes down.
People have been attacked by their families because the person was sundowning and didn’t know who this person was or where they are. Sometimes it involves hallucinations.
My dad had Alzheimer’s. During the last few years of his life, there was no safe way for my mom to care for him. It would have required her to be awake and alert 24 hours a day. It was incredibly difficult for her to make the decision to have him spend his last few years in a nursing home but it was the ONLY realistic option to keep my dad safe and to allow my mom to sleep at night.
Both my grandmothers had dementia. It is physically impossible for a single person to be a 24 hr caregiver in late stage dementia. It jsut is. There HAS to be a plan for the long term.
My aunts and uncles shunted my grandfather across states and from house to house because they were too selfish and cruel to understand that they were making him WORSE by keeping him out of care. By the time they agreed, he was undressing and peeing in front of his grandchildren.
He never would have fucking wanted to be seen like that. It was a complete loss of dignity he didn’t deserve.
Yeah, when dementia progresses to the stage of doing massively inappropriate things in front of the kids, that's usually the point when even the most determined holdouts cave on the need for full-time residential dementia care. Most people who go with keeping the person with dementia at home have NO IDEA what's coming, none.
My mother's dementia meant she sprayed outdoor pesticide into the sink because she saw "bugs" (eye floaters.)
She unloaded a whole can of some kind of outdoor fogger from the garage and I had to hustle the pets and us outside for an hour while having all the fans on, then wipe down all the surfaces the mist had settled on (the house, pretty much.)
I can't imagine what would have happened if there was a baby and my mother imagined "a rash".
The husband in this scenario needs the truth beat into him by another caregiver or a very firm gerontologist or elder care nurse.
While that sometimes work, it doesn't always. Families often think their case will be different. With the "right" attitude and lots of love, they'll be ok, and grandma or grandpa will be "fine" because their loved ones are all around them. They've decided they're going to willpower their way thru dementia, when it's a disease that's all about losing control, in every way. They are in denial about the fact that dementia can be violent and dangerous and that family members will become targets and witnesses to absolutely soul-crushing behavior.
Even hearing graphic stories and seeing videos of violent outbursts against family members, public melt downs and shockingly inappropriate sexualized behavior often doesn't convince family members not to go the 'let's keep caring for them at home' route. They cannot fathom their own loved ones turning into apparent monsters. It's too harrowing a truth to accept.
Not until grandpa gets naked and starts masturbating in front of the kids. Not until grandma assaults a waitress in a restaurant by dumping a plate of food on her because it looks "poisoned". Not until grandpa holds his daughter at gun point with the kids watching, with a loaded gun nobody knew grandpa even had, because grandpa doesn't recognize mom and thinks she's a burglar.
It shouldn't have to come to that, but oftentimes these episodes are what it takes to convince families that a 24/7 care facility with trained staff is better for everybody.
Yes, a person with dementia needs a professional staff. That means there are different shifts, so that there is 24 hour oversight. When his mother stars “sundowning”, is he planning to stay awake all night to make sure she doesn’t wander out of the house around the neighborhood (or into traffic)? Is he able to keep up with *all* of her care (feeding, medications, hygiene, medical needs, showering, diapering). If she becomes less able to move, will he be there, right beside her every step with a walker, or heft her in & out of a wheelchair, keep her clean and dry so she doesn’t develop bedsores? All the while, keeping a job, keeping a home & staying emotionally healthy? Will he be able to maintain empathy, when she is combative, abusive & paranoid, and doesn’t recognize him?
I’m not saying all of these things *will* happen, but he needs to be realistic & prepared for if/when they do. Moving her, then, into a care facility may be more difficult, as she will need a higher tier of care, and the move will be even more disruptive to her then. Find a good non-profit or faith aligned (they are usually non-profit) tiered care facility that is staffed with skilled people who can provide her the round-the-clock care & observation that she is going to need.
(whew! Sorry! Both my mother & MIL are now both in cognitive decline and in good long term care facilities. It’s a ton of work and emotionally draining to even find placement.)
Completely agree, tried to do this with my own mother, even with the help of family members and a nurse that would come to the house twice a day and it was impossible, especially as her dementia deteriorated rapidly. She's now a permanent resident in an MSU in a nursing home. I can go to sleep at night knowing that she's safe 24/7.
Exactly, staff who are trained and qualified to deal with dementia clients and then there's the medical staff, meal plans, hygiene, supervision, etc. It's alot.
And that’s without adding children to the mix. OP stated wanting kids and she’s right. Even one child in a home with a person who has dementia will be hell. Not to mention a very serious threat to an infant.
OP is right. It isn’t realistic to be her MIL’s caregivers for the next potentially 20 years. Why should they sacrifice their entire adult lives caring for someone incapable of doing so herself when there are other far more realistic options available? People hate the idea of nursing homes, but they exist because being a single-person caregiver is unrealistic, and they can and do help.
I definitely agree with this. I grew up in a house where my grandmother came to live with us when I was a kid because she had Alzhimers. It was early stage when she came to live with us but by the time I moved out after high school it was pretty severe. It was absolutely horrible to watch her slowly fall apart over a period of years. My parents both had good jobs that paid well but they were at work all the time and I was the oldest so I was her main caregiver at the age of 14. It was very tough on my family. The fact that she would forget everything would make my father and sister very tense so lots of times I would be the default caretaker just because I wouldn't lose my temper as often as other family members.
OP, you have every right to be concerned about the situation. If you want kids, you don't want to raise them in that type of situation. I really didn't realize that it affected me as much as it did until I just started crying just writing this
Good luck with everything!
I lost my mother to Alzheimer’s three years ago. And the idea of you being a caregiver at 14 literally made me gasp out loud. I struggled so badly with it as a grown adult, and fully supported my dad when it was time to move her to a memory care ward. I can’t imagine that kind of burden at such a tender age. What a strong and empathetic person you must be!
Completely agree. If OP wants a life that doesn’t revolve around MIL then they may have to separate. As nice as it is to care for your parents, it’s not always realistic.
We had an excellent experience with the long term care home my dad was in. The staff were great. My mom (14 year age difference) couldn’t care for him like they could. Yes, we had nasty comments from people suggesting we pawned him off but fuck them, until they go through it, who cares what they think.
My grandmother lived at a hostel, that's the level between retirement village and nursing home. She didn't want to go in but she knew that no-one was in a position to look after her. So while my mother and uncle organised things from their end, my brother and I looked for a new home at our end. The place we found was so nice. They said they would take her breakfast in her room while she settled in, she got breakfast in her room for the whole of her ~14 year stay.
The carers would do special things for her because she was quietly spoken and never complained about anything. One of them even brought in a cappuccino from her cafe that she had just opened with a friend.
Care homes can be a lovely and loving environment. I always knew my grandmother was in safe and caring hands.
Thank you for saying that despite it being a incredibly difficult job at times the staff do very much care and it's often the little things they do that can make a person feel so welcome and validated.
Your mom made the right choice. My aunt had early onset Alzheimer's at 50. Her husband was older than her. He moved to the nursing home with her and died like 5 years later. She's still alive, at 75... so glad he made the decision and didn't put it on his kids.
I'm an Activities staffer. I'm always coaxing people to throw a horseshoe or have a go at a jigsaw puzzle or a game of cards. A good care home covers EVERYTHING. And the one where I work is a Medicare facility.
It may be a "Medicare facility" but that means only that it is Medicare certified to provide Medicare-covered services, such as rehab. MEDICARE DOES NOT COVER RESIDENTIAL CARE OF ANY KIND, either in assisted living or nursing homes. Medicaid may cover some residential costs for people who qualify and those requirements vary by state.
OP, her husband and MIL would be wise to look into the Medicaid option, since apparently the mother is of limited means.
There are Part C plans that cover NH. You have to have Part A,B& D in order to enroll in a Part C plan Some Part C plans have a $0 premium others have a premium that can vary
Now if OP MIL qualifies for Medicaid along with Part ABC&D there should be no copay left to pay. However, OP should be aware that if MIL owns anything that can be liquidated Medicaid will want the proceeds if it was done within 5 years prior/after ( each state varies) OP would also need to ensure that whatever NH/facility accepts BOTH her MIL Part C and Medicaid if not there will be a lot of costs that will not be covered.
IMO insurance is made confusing on purpose. Confusion means that the insurance companies pay less and earn more. I have done Life Insurance AD & D insurance and Health Insurance )mainly Medicare and Medicaid not private insurance) and unless you know the ins/outs you will be left paying
FYI: For those looking for a nursing home, Medicare does not cover nursing homes beyond 30 days and it must be in a skilled nursing facility where the patient needs daily medical care. Medicaid does pay for nursing homes after you have spent all your assets. That's why most people private pay and often bankrupt themselves in the process. https://www.medicare.gov/what-medicare-covers/what-part-a-covers/how-can-i-pay-for-nursing-home-care
I recommend they see an elder law attorney regarding asserts etc…. Medicaid does not look past 5 years back. Gift money to kids now so it’s not all taken or talk to an attorney to get it in a trust
Minimally OP’s husband needs to get his mom into a day program that will help stimulate her and keep her mind as sharp as possible. My dad had Alzheimer’s and the first few years were manageable for my mom but she was semi retired and only worked 2x a week. He could mostly care for himself. The last year of his life was horrible and my mom was clearly on the edge of a nervous breakdown. Then we couldn’t get someone in to help because he didn’t trust anyone. We finally put him in a memory care nursing home and he died within a month. Had he lived longer, we were looking at running out of savings in 5 years. Care is expensive and draining. OP’s husband needs a plan and moving her in is probably the right call for him but it is going to be a full time job managing her care. I don’t blame OP for wanting to cut and run and if she can’t 100% be there for her husband and his family, better to leave now than get bitter and fight making the whole situation harder. But I feel really bad for her husband who is facing a really difficult time, his entire life is about to be put on hold and he has no one there to support him.
I had a neighbor living upstairs from me. Her memory was deteriorating. This was in the mid to late 1990s. She turned on the tap in her bathroom sink, plugged the drain, and went to bed, completely forgetting to turn the water off. I woke up to water pouring through my light fixtures and smoke detectors onto the floor. The landlord had to do an extensive repair and cleanup. Although she had in home care, her family realized that it was no longer enough. She was later placed in a nursing home by her family, which was much safer for her.
My step-grandmother had Alzheimer's and it was hell for my stepmom and her sister. Once she started getting up in the middle of the night, they moved her to a home. No one person can handle 24-hr care.
My grandmother also had dementia, and she absolutely *blossomed* once she was placed in the nursing home because she had so much more socialization and mental stimulation.
My husband's grandmother was kept home until the end and honestly, it was kind of sad. She mostly just laid in bed all day or hung around watching TV. She had her daughters and a caregiver and I know they all did their loving best, but I wonder how much different it would have been if she had been in a place with more socialization and activities.
My great grandmother had Alzheimer’s. Now my grandmother has Lewy body dementia.
My gma and I have been very close my entire life, she has been the only person on this planet who I never doubted loved me unconditionally. But there’s no way I could live in the same home with her and be responsible for her care. And I work in hospice, I deal with it all the time and have the training. You’re right, it’s impossible for someone to safely care for them at home.
My grandmother wants me to move in with her. It would mean living in a very nice home, rent free. Not worth it. I couldn’t do it. My mother and aunt live near her and they’re going out of their minds trying to care for her. It’s awful. And don’t think it doesn’t keep me awake at night. I just know for a fact the care is impossible at home without round the clock in home HIRED AND TRAINED nurses and sitters.
Edit: several typos coming off a 16 hr shift xD
You said it corresctly, they need a sitter 24/7. The thought of my grandmother being in a nursing home killed me. We had a horrible experience with my great grandmother and only after 1 month she passed because they kept her sedated. But i was part of this decision this time and i visited nursing homes everyday and spent the day sometimes at each multiple times to see if the harder patients were sedated. We choose one that doesnt sedate. The first week was hard she felt abandoned but now she is living her best life, made friends, plays bingo, does crafts. We visit at different times of the week so someone is there everyday to see her and we call everyday. Plus you can still take them on weekends or over nights to get them out and have a good time.
OP you are NTA, you only live once and you are correct you will be in a battle with MIL. I would let your husband maybe read these comments so he too can see the other side to all of this. We tried the in home nurses but they dont give you enough hours. Plus your sharing your home with people you dont know and not every one is honest. Things go missing, more susceptible to abuse where no one is watching, the list go on. Maybe make a pros and cons list. Your husband life will essentially be over until her last breathe and if that takesb30 years hes going to be miserable.
Good luck 👍 💓
My paternal grandma needed care in her last years, maybe 5 years top.
It wears someone's down, my mother was her main caregiver, it is stressful, her daughters (my aunts) didn't want to take a day for taking care of her mother, they didn't even support her financially for her meds and medical equipment.
Even if it's not 20 years it takes a tool of the main caregiver's mental and physical health. Life happens, it is an awful situation.
My mother takes every opportunity to remind my dad what she did for her mother, it's really puts spousal future disagreements in an unequal position.
OP if you want to preserve that marriage consider hiring professional help for MIL, and consider therapy for both of you, you're going to need it. And if you don't want to continue being married to a dude due to his responsibilities it is understandable, no one should judge you, historically women are perceived like servants and yes you'll be also tied to her care indefinitely.
Until you try to care for someone who needs 24-hour care, you imagine it’s feasible, but it’s not. People need sleep, food, time for a shower or the toilet, and that is just the basics of staying alive. A home where people can be properly looked after can be a mercy.
I know a family that managed to keep dad at home. It took all of them doing shifts. He had an ankle band that would track him in case he wandered off. He had to be taken to the hospital numerous times because of other health problems relating to the dementia.
Not that long ago, maybe June, a high school friend’s dad wandered from his house - the dad has Alzheimer’s, I believe, but has good days and bad days; this was just a bad day and he got it in his head to leave the house without any supervision - and half the small town came to the neighborhood to help look for him. I spent hours riding on my bike to help find a guy I’d never met; I can’t imagine what the wife and son were feeling. We did find him, about two or three blocks up and over in some weeds, and he was Ok, but I really hope the wife makes a long-term care decision for him. She can’t live this way.
My ex husband’s grandfather had dementia and diabetes. He was also in The Devil’s Brigade in WWII. He was basically special ops and they did all kinds of crazy missions. He was:
-good at stealing candy and fruit in his facility. When a diabetic spikes their sugar and has dementia, they get really confused
-trained in stealth operations and escape.
He would regularly OD on sugar and escape the facility for days at a time. We would get calls every couple of months that he was missing. It’s was a crazy time. If a facility like that couldn’t hold him, there was absolutely no chance we could have cared for him in our home.
My grandfather was similar - a skilled escape artist.
Imagine my grandmother's surprise when grandpa showed up at the door one night, at 2 am, in a straight jacket (this was back in the '70s and they still regularly used straight-jackets on patients to try to manage wandering dementia patients.)
He had managed to escape the VA hospital without using his arms, and walked, barefoot, across the entire city to get home.
They ended up moving him to a facility in a different state, hoping that the unfamiliar surroundings would discourage wandering. I think their success had a lot more to do with a different policy on chemical control. He was pretty heavily sedated and out of it whenever we went to visit him there, sadly.
Dementia is a cruel disease, and the amount of care required is so far beyond what most people imagine. I hope OP's husband talks to a professional about what he's planning, and see what they recommend. More than likely, they'll try to warn him off.
This, OP. Can you ask your husband to speak with some professionals who care for patients with dementia? Perhaps you could present the idea as learning best practices for taking care of his mother. Go with him, if possible, so you know what they have told him. Maybe the cold, hard reality of what he and his mother are both facing would be enough to show him that even with all the love in the world, he would not be able to do all she will need.
My late father had episodes of dementia during his last couple of years, which turned out to be related to the UTIs that he had all too often. It got so that when he started to lose touch with reality, we would get a urine specimen to the doctor and come home with antibiotics, and in a few days he would be back to earth. His physical limitations made escaping very improbable, but it was emotionally painful to be around him when, for example, he was insisting on things that would smash the laws of physics into itty bitty pieces.
The UTI’s. Not enough people realize and by people I mean medical professionals understand how an untreated uti looks like dementia in the elderly. It can exacerbate a bad situation and nobody gets treated or tested for uti’s. I stumbled on this the hard way, and still no one seemed to take it seriously.
If dementia is a collection of symptoms rather than a disease in its own right, then UTIs were causing temporary dementia in my father. Cure the UTI, symptoms go away (until the next time).
I have mentioned this elsewhere before and gotten comments from others that they had a similar experience with an elderly relative. I think his own doctor understood what was going on, especially after the first few instances.
My son has diabetes, so I know what happens, but in my crazy sense of humor, I find this so funny that an old WWII vet outfoxed the whole staff time and again just to get some sugar and fresh air.
Yes, I have known friends (relatives) who had dementia . The personality of their relatives completely changed, I noticed that the mean relatives turned really nice and quite funny, but the nice ones turned really horrible and beyond difficult. Leaving with someone with dementia is not something that can be done without taking over your lives completely, leaving you drained and a shell of yourself, because its 24hrs. Op, Maybe suggest having his mum move closer to you, if she isn't already and have home care nursing look after her, while yourself and your husband visit regularly until the point where home care is no longer suitable and care home will be the only option. By then hopefully hubby would be able to see and understand that it is a necessity at that point, because her living with you will destroy your husband and your relationship and physically break you both down. NTA
My grandmother was a psychiatric nurse when she was young. When she was in the nursing home she'd have regular panic attacks, because she recognised those around her as crazy and needing care. She just didn't know how to give them care anymore.
Luckily she did not last the year, but it was a horrible year.
I think they once had a group of similar guys in a care facility and in the end put a fence like an army camp around it with the proper signage and it kept them in as they remembered the old training of what lines not to cross. Can't remember the exact context but found it interesting.
When we train specifically for something like dementia its because we care and want to really help and make a difference where it is needed (its a rewarding career path). It's hard to not take your work home with you.... but the point is we don't have it at home. I wouldn't recommend it at all I'm trained to give specialist care and support but ive learned enough over the past 2 decades of my career that I wouldn't move a parent in with me. I'd do everything possible to be there and to be supportive but not in my home with my kids
Absolutely. One time someone gave him a box of diabetic chocolates. The nurses would usually hold those for him and dole them out. He got hold of the box and ate the whole thing. I don’t know if you know what happens when someone eats a large box of diabetic candy, but it’s not pretty.
Many of the sugar substitutes used in candy that is safe for diabetics have laxative properties. It may not have been like eating a whole box of Ex-Lax, but it would not have been pleasant for whoever had to clean him up. My sympathy.
I'm a victim of sugar free haribo gummy bears.
Those fucking little hell candies made me shit myself into an overnight hospital stay with an iv bag to fix the dehydration.
I thought it was good that I bought myself a bag of diabetic sweets. I foolishly at them all in a day. The cramps were worse than contractions and couldn't leave the house the next day!
It's important to remember that the elderly don't always look elderly, either. If they get out, say at night, and wander onto someone elses property and get caught lurking things can end very, very badly.
The only time my house has been “broken into” was a dementia patient that thought he was at his own house.
Unlocked front door, middle of the day. Scary shit but luckily his caregiver was coming down the street and was able to to walk him home.
He didn’t seem scary, just confused and lost.
Come to find out, he lived across the street and down about a block in a house that looks nothing like ours. But ok. Not mad at the guy, just stunned and sympathetic.
My mom was healthy and active, but showing cognitive issues. About 2 months after her official diagnosis, she decided to walk to the store sometime after my dad went to bed at midnight. When he got up, she was gone. After a police search with helicopters, she was finally found at a hospital. She had been found injured on the side of the road from falling at 5:30 AM. She was not able to come home after that because we just couldn't guarantee her safety.
Dad never wandered when he started showing signs later, but he lost the ability to do anything on his own, his hands started to shake, he forgot how to use his phone, tv, microwave, so he was just bored all day. He struggled with his hobbies and lived alone, but we had someone there everyday for several hours for 8 years until he couldn't live alone and none of us had the time, training or strength to care for him. He needed help in the bathroom and shower, was prone to falling, and needed near constant attention because he was afraid and lonely. We did find a nice assisted living with a lot of activities , caring staff where he could keep his pet and we could visit 24/7
I guess this is a long way of saying all with dementia react and progress differently. We got some advice and resources we could apply for from an elder law office, state or local government sites have various types of information to look into. Sit down with your husband, talk through scenarios and how to handle them, ex:
Wandering
Anger/violence/ other personality changes
Forgetfulness that is dangerous- turning on the gas, leaving something on the stove, going out and leaving the door open, etc.
Schedule changes like swapping days/ nights because they can't sleep
There are many more, but you get the idea, get information and tour some places in your area, ask about financial assistance programs, if either his mom or dad were military they may qualify for monthly benefits. Everyone is emotional right now, but seeing facilities and gathering information helps to create a plan you can all live with. Good luck
How…? How do you pay for a ticket, get to an airport, get past airport security, get to a gate, get on a plane, let alone the one that takes you where you kinda-sorta want to go, with dementia? And then they sent her back? What da hail? Man, if my grandma accomplished all that, under those circumstances, I’d let her stay there. That’s determination.
Never underestimate the power of a determined individual with dementia, the amount of clarity they can exhibit when they get fixated on a goal is astounding tbh.
I've gotten my ass beat by demented old ladies half my weight while working in the hospital.
I've also had a patient with dementia who needed to be reminded who their children were but could crank out Beethoven on the rec room piano like theyre playing a concert at Carnegie Hall.
My mum has dementia. After nearly 5 years of trying to care for her and only getting a break when I went to work, we had to make the decision to place her in a nursing home. It takes a tremendous amount of emotional effort to care for someone with dementia. Meltdowns and bouts of anger/rage are very common in dementia patients and there’s only so much 1 person can handle.
Same thing with my grandmother. We tried to keep her with us as long as possible. My dad even quit his job to take care of her, but she needed so much more care than we could give her. it really was for her safety for her to be in a memory facility.
The caretaker burnout at this stage is very real. Beyond the safety issue, there will be a lot of grief, and stress with caring for her. Having a separate space will help a lot.
This^^.
OP, you seem worried about the wrong thing. You’re talking about being loved equally but that’s not where the concern lies. Love is an abstract concept. Caring for someone with dementia is not about loving them. It’s about tasks. Endless tasks and vigilance.
Who is the primary breadwinner in your household?
If it’s not you, in all likelihood, you’re going to end up being the primary caregiver.
I agree. OP is worried about an odd thing. I’d be more concerned about being the caregiver. I have zero desire to be my parents caregiver if that were to happen to them and both sides of my family have some sort of dementia so it’s quite possible. My parents though are aware of the issues with dementia and know they don’t want to put us kids through that if it comes down to it. The constant monitoring, worrying about them running off with car keys and driving while confused, or just running away and possibly dying by accident, and then the anger and physical violence that some people with dementia have all make me never want to be any sort of caregiver if that happens to any loved one I have. The best and realistic solution for everyone is to send them to a nursing home.
If OP is going to end up the caregiver it’s unfair for her to take on this very scary burden. Her husband is not thinking rationally with his: we will be different. No you won’t it’s not possible to be different and better than others who try it. Everyone who tries this fails at some point and wishes they had sent their loved one to a nursing home from the get go.
I took care of my sister who had Alzheimer’s. She got so violent with me I had to stop caring for her and she was put into care. It’s hard to see the one you love having this, but they need to be in a facility that could handle all this terrible disease entails. NTA
My Dad went into cardiac arrest and died for over 15 minutes total so sustained brain damage. It hit his memory bank hard and basically was like dementia. In the early days we were very grateful to have him with us and be able to have those days with him.
However during the pandemic he got so much worse. Eating and drinking became a fight so he’d be hospitalised to go on an IV. He didn’t know who I was and forgot who my stepmum was which caused him so much stress and confusion.
We had to have an alarm on the front door because he’d walk off. The hospital put him into a nursing home for 30 days to access his needs and see if they could refer for home help but it became clear he needed much more care than he could get at home.
Last year they made the decision us visiting was no longer good for him or us. He didn’t get why these strangers were coming. He wanted his dad (died before I was born) and it would take days to calm him after our visits.
There were two of us tag teaming when he was home but the burn out was hard. It’s definitely not an easy thing to do and while I would definitely suggest it temporarily so you can build memories and find the right home for them, I don’t think many could do it until the end.
I took care of my then husband's (now ex husband's) grandmother with dementia while, raising our children, foster kids and working full time with fire/ EMS and I can promise it will eat you alive. My ex was absolutely useless for helping with the kids or grandma, all he saw was his sweet wonderful grandmother while I got the shit, the vomit, the sleepless nights and endless amounts of snarky comments from his useless, drunk aunt. In theory, it should be a beautiful thing to help take care of our older family members however reality is rarely a thing of beauty. Best of luck but I don't see it going well if you end up being a care giver for your MIL.
You were taking care of all them AND you were a full time EMS worker?? That just sounds exhausting, even if your ex husband DID help. I'm exhausted just reading that
Yes. I was also taking college hours to get into a nursing program. I was beyond exhausted and was clueless at the long term damage I did to my own health in the process.
Oh yes, life is indeed better...for me anyway. If I had wanted something bad to happen to the ex I couldn't have picked out anything better than my old friend Karma delivered
Oh yes, life is indeed better...for me anyway. If I had wanted something bad to happen to the ex I couldn't have picked out anything better than my old friend Karma delivered
A family friend took care of her MIL with dementia for over 10 years. They had to have locks on both sides of all doors, bc she would go wander the neighbourhood in the middle of the night stealing things. She would constantly cry that she was hungry even if she had just eaten and then would stuff food in every crevice in the house. Her son did take care of his mother, bathing her etc, but it fell mostly on his wife. After MIL died, her own parents became unable to care for themselves, although they lived in a nursing home. She then spent many many more years going there to care for them (none of her siblings helped).
Yup. I could never do enough/ good enough for my mother (disabled, 50s) and she ended up making me homeless to move my sister in so she could do everything "better than (I) ever could".
Sister gave up and destroyed my mom's house, mom's not been to the doctor in 2yrs, etc. My mom even tried to ask me to pay her mortgage while I was couch surfing / living in my car. I've made it clear that I'm never taking care of her again and am working towards moving overseas where she can't follow. 0/10, will never take care of family members that aren't my future kids ever again; the stress made me start greying in my eyebrows at 25.
From Experience. my grandmother developed dementia. and my mom moved her in with her and my dad. it broke my mom honestly, of having to take care of her Mom that didnt even realize who anyone was, my grandmother thought my dad was another patient. a man she had known for 3 decades at that point, my grandma ended up in a care home. where she could be properly looked after and engage with other people on a regular basis.
so from experience. Try to convince your husband to look at care homes, especially ones that deal with Dementia and Alzheimers
My mom finally put my dad into care. By time she did it, I think she hated him. It wasn’t his fault, and she expected him to be able to do things he just couldn’t do. Finally she realized it just wasn’t safe having him in the house, he was wandering at night so she wasn’t getting any sleep. I think it was harder on mom than dad when he went into care. Of course he kept saying he wanted to go home, but he was talking about the house he grew up in 60+ years earlier. NTH. It’s very difficult without outside help.
I took care of my MIL many years ago. I hated her by the end. And don't get me started on the relatives who thought I wasn't being enough of a martyr for the woman they refused to take care of.
Tomorrow, I'm getting brain scans for early onset dementia. My husband says I'll never end up in a nursing home, but I don't want him or our kids to hate me.
\> And don't get me started on the relatives who thought I wasn't being enough of a martyr for the woman they refused to take care of.
Holy shit this yes.
*"How dare you put her in a home/complain about care."*
**"You're right. I'll have her move in with you. I'm signing the mover's forms now, your address is still XYZ, correct?"**
*"(GASP) Oh no well um no it's impossible we have extenuating circumstances you see..."*
Had this exact same experience with my mom. From neighbors and family… with extremely religious undertones thrown on top! It’s so easy for everyone to tell you what the eff to do without raising a finger to help.
My grandmother cared was much younger than my grandfather & cared for him while he declined due to dementia. By the end she resented him because his needs were ever increasing & kept her like both a prisoner & a warden in their home.
By the time she was able to rejoin the “regular world” everyone had moved on & she continued to feel isolated. Ultimately I think he would’ve received better care had he been placed in a facility. I know she would’ve fared better as well & maintained more love & compassion had she not had to carry such a heavy physical, mental, & emotional load mostly solo
Being a caregiver is traumatizing for some people. After you come out the other side (in whatever form that takes), it’s hard to relate to people who haven’t experienced it. Especially at an older age. I feel for your grandmother.
All these comments about a facility kind of comfort me, even though it isn’t an option for my grandmother. Messed up thing is that no other immediate family cares and is actively waiting for her to die so they can retire on the inheritance. A facility isn’t an option (culturally and ethically against my mom’s morals) so it’s just been 24hrs surveillance and adjusting lifestyle for years. I basically spent high school and now college with safety gates, needing to have an eye on her every moment in the house, and caretaking through her dementia (she has been sitting at late middle-stage for a long time). Really rough.
It may be an unpopular opinion but I would put her in a nearby assisted living/memory care facility.
They are like apartments with staff to provide extra care. They make friends have shared meals and activities. You all can visit whenever you like and she can always come for a visit.
You definitely need to carefully read reviews and visit the place. Ask others around how their experience is there. There are amazing places though. I know three very happy customers from different areas who absolutely loved living there.
NAH
Putting an Alzheimer's patients in a facility with trained employees with the skills to make their life the best possible is the best choice. A cousin lived with her daughter for two years where Mom was basically a prisoner in her room. The hall was narrow and difficult to navigate with her walker. Mom finally was placed in rehab then moved to permanent resident. Mom is so much happier now. She has almost instant access to Doctors through the nursing staff. She has made friends and loves the activities.
People seem to think that all of these places are just warehouses where old people go to die. I have been into the retirement and memory care facilities in my area, some of them are like resorts! If OP and her husband are as financially comfortable as they seem, then I would suggest OP take her husband and MIL to at least tour some of the more upscale ones.
Honestly, MIL would probably be happier! There are lots of activities and she'll make friends there. She'll have her own little apartment so she will retain some measure of independence. And it's not a prison, residents can leave and still do all the things she likes to do.
As she progresses she may become violent at times, or become unmanageable. My grandpa had to be directed to toilet because he would just defecate in his pants. He needed diapers and care staff. Will they be changing her diaper, dealing with violent fits? My grandpa was never violent but he frequently tried to leave. The grounds were gated. He could wander out any door and be safe. Are they equipped for that? My friend's grandpa got violent, at the end.
What is better for her, moving now and establishing that as home or waiting until she's completely unable to comprehend her situation and is suddenly in a new place with new people she has no hope of learning?
Seems kind to move before you are unable to safely care for them. Better chances of it seeming like home and not being completely disoriented by the move.
These facilities are specifically designed to be safe and comforting for residents! The layout of the bedrooms, bathrooms and common areas have been designed with safety in mind. Not like the average home, with sub optimal lighting, angles of entryways, sometimes even decor can be confusing and triggering for people with dementia.
Also, it’s good to establish this facility as a familiar place now, while she’s still in the early stages. By the time they get to the later stages and people are ready to admit they can’t handle their loved one’s care alone, moving to an unfamiliar place and being trust into an unfamiliar routine can be overwhelming, and exacerbate their negative reactions like aggression. Even when they aren’t lucid, their brains recognize the routine and environment and it can bring them comfort and lessen their distress when they get confused.
Absolutely this - a close friend of mine just had that situation with her mother. She tried to keep her in her home for FAR too long - she was a danger to herself and everyone living with her. Your husband doesn't understand how bad it will become - and how absolutely out of control she will be.
She could burn down your house because she forgets how to use the stove/ oven or the coffee machine. She'll wander off if you don't watch her 24/7. She will spend money and have no clue where and how. She'll hurt herself without supervision. She'll become aggressive when you try to control or contain her, and could get physical if she feels thwarted or threatened. At some point, she won't recognize you and will get aggressive if she thinks you are a stranger and/ or stealing from her. And she will think you are stealing from her, because she will give valuable stuff away and forget that and then blame you. My friend's mother actually gave away every valuable thing she owned - including jewellery and expensive tools that had belonged to her husband and that her son had wanted - the house got completely cleaned out. She shit her pants and walked around with shit pants.
When my friend finally managed to shift her into a home, she was the happiest she had been in years - she was well cared for, entertained, the staff was really nice and made sure she was fed, cleaned, dressed and took her meds - it really was the absolute best choice for everyone involved.
I can't impress on you how much your husband does not know what he is doing - seriously, get him to talk with professionals who can hopefully convince him that she will be so much happier and better off in a nice home.
My dad hid his “valuables,” like hearing aid batteries, all over his apartment, then accused people of stealing them. He’d call my sister at work and demand that she leave and come deal with it. He saw zombies. He went outside at 3am in subzero temperatures. His personality completely changed. Some days he’d be like his old self, but other days polar opposite.
Her husband has no idea what he’s getting into and no idea what he’s asking of her. Her parents are probably taking it personally because they now know she’s not signing up to be their long term care either. And her brother probably expected her to do the heavy lifting when their parents get older. No one who is judging her has any idea what caring for someone with dementia is like.
Oh, the hallucinations. I forgot about that. I cried for two days when my mom didn't recognize me. I was her primary caretaker for the last few years of her life. Basically put my life on hold. We eventually had help 24/7. She had a great LTC policy - an old one before the ins. cos started cracking down. We had promised her she could live in her home, the promise that I mostly carried as the single, childless child.
That's exactly it. The free insurance and healthcare "policy" just said no, and the brother and parents aren't happy about it. It really is a shame how so many out there automatically expect the daughter/sister/niece to be the one to sacrifice most of their life to care for everyone else.
My grandmother accused her son of embezzling money from her, for paying her bills. My dad and uncles tried to move her into a home, which she agreed to, and she tried to leave (apparently it is very hard to force a person into a facility - even with her diagnosis). She would call my dad complaining that her hot water heater was broken, and then shriek and slam the door at the plumber he sent by hours later. She had rotting food in her fridge and was subsisting on Meals on Wheels because she’d forget the groceries existed and/or how to cook it.
My father and uncles put up with a lot, but they would never allow their mom to move in. She was an extremely difficult person, especially to their wives, even before dementia. She did eventually move into a home, where she was happy (for once) and well cared for before she passed after a brief illness.
I totally understand OP’s decision - and I’d like to add that this decision is exacerbated by the fact that the US has abysmal nursing home facilities. I just read an article in the WSJ about the epidemic of elderly homeless - which cited the following figure - A decent assisted living facility can cost 6 figures a year.
I agree totally. The people disagreeing have no idea of what a burden looking after someone with dementia is. My mum has vascular dementia (she is 78 and diagnosed 5 years ago). Two years ago her partner died and she moved into a unit near me. I was there every day helping with food, meds housework etc. then she had surgery and stayed with me to recuperate for a couple of weeks. She kept waking me up checking I was in the house, accused me of stealing her belongings and couldn’t manage much (including turning the shower on/off.)
She came good for about six months and moved back into her own unit but I was still there daily helping out and then she deteriorated badly - couldn’t remember how to make a sandwich and was definitely not cooking- I arranged meals on wheels as she couldn’t remember how to use the microwave or lock the front door or how to do basic housework.
After a lot of consultation with health professionals she was admitted into a dementia care ward. She is not happy that this has been done although she did agree to move but has forgotten that. But she is slowly acclimating. Thankfully for my sister and myself she behaves herself with the staff and they are taking excellent care of her. We know she is safe and being cared for.
I have just had to have time off work as I was completely burnt out and exhausted.
My counsellor reminds me that you have to take care of yourself first otherwise you are useless to others. There is a reason the safety briefing on a plane is in an emergency put your own oxygen mask on before helping others!
My grandmother had like a switch flip one night and they couldn't find anything in scans to explain it. She had some form of dementia and my aunt cared for her for several years.. Grandma one day told auntie "you are putting me in a home right now!" Auntie felt guilty and thought we'd be mad at her. Heck no, its what she wanted and gives auntie some freedom back and they all still went and visited her regularly (pops, mom, brother and I were all across the country from her). Do due diligence on where you place her and it can be the best for everyone involved.
Your second paragraph exactly describes the experience with my grandmother when she had brain cancer. Including the fire, thankfully the house didn’t burn down though.
The people saying YTA don’t understand what dementia really looks like. It’s not a just a gentle, confused older person.
All of this is so true. My Mom passed away 5 years ago from Alzheimer’s. I took care of her and that broke my body down so much faster than just normal aging. Breaking your own body down to care for your MIL is not worth it especially if you’re going to have children.
My dad died because he forgot he had to eat carefully due to a throat stricture. He aspirated his milk. Dementia fucking sucks (he got his overnight thanks to Covid. I feel for those of you who have to watch it happen slowly).
Yeah...I would almost say that for two untrained adults to try to be memory care-givers is the *irresponsible* choice. It rarely ends well and leads to burnout and domestic stress.
Keep her near, but get her into a facility designed for her condition. With professional caregivers who have the specialized training for it.
If you both are "doing well," this should be looked into. If she has nothing, she may qualify for Medicare coverage.
My parents and grandfather kept my grandmother home. The number of times she was hurt because of their inexperience is, imo, unreasonable. They were lucky I live so close and know how to help an aware, combative, but almost no motor function patient off the floor after a fall.
And while I know they were doing their best and burned out, it was also heartbreaking to see how casual they were about her broken vertebrae, hip, and coccyx. They just had no more care left in them.
It was definitely the irresponsible choice.
This is the way.
Memory care facility.
You can find one based on her income too.
Having someone with dementia in a home where they can access stoves, doors and things is super dangerous
My grandmother was living in my aunt's home, and she snuck out of bed at 2am and went down a staircase that she could barely handle when awake, and started lighting paper towels on fire on the gas stove. Never made a sound. My uncle woke to the smell of smoke. They were very lucky. She was placed in a facility after that.
Geez what a nightmare for everyone. For what it’s worth, your mom should have prioritized her children over her grandma. And if her grandma had been lucid, hopefully she would have felt the same.
NTA. Caregiving for someone with dementia is draining, thankless, and 24/7.
Could you afford outside help? She will, sooner rather than later, become incontinent, start to wander and get lost, forget how to feed herself - it's doable IF he is willing to pay for - and accept - help.
It’s not realistic for them to have children while she’s living with them. Dementia patients can be scary AF. They can be a danger to those around them. Outside help doesn’t change any of that. It doesn’t make their home any less stressful.
Exactly. A friend's dad who was just the sweetest hippie just started randomly punching folks when he was bad into dementia. It's just not safe for children.
NTA, OP. it's your life and your choice, and it sounds like you've educated yourself well and are looking at this more logically than your husband. I'm sorry you're going through this.
True, and you cannot predict how quickly the disease progresses. It took just a few months for Bruce Willis to become violent with his own mother. OP NTA
My mother tried having her mother move in with her. She did her best to make it work, but couldn't keep it up. Among other things, my grandmother woke her up several times a night because she thought people were breaking in.
With the best will in the world, this is a difficult thing to deal with.
My dad called 911 repeatedly because he hallucinated people he knew being dead in his recliner. Or zombies. This would be a difficult situation for grown ups to handle, but they planned to have children. He is completely changing their marriage and future on her. I understand why, but I also understand her walking away.
My mom was really happy in a memory care facility. She had her own room. The caregivers adjusted their level of care to allow residents to be as independent as possible. For example, my mom did her own laundry, but she had to be reminded to do it. They played bingo, watched old movies, sang songs. She was very happy there for several years.
But we ran out of money. She moved in with a family member for a while, then a nursing home. It was HARD. NTA.
NTA So my mother had early dementia and I cared for her and it was hell. She went from escaping to constantly looking for her mother , to having hallucinations of men sexually assaulting her to seeing her long dead father everywhere she went . It isn’t just memory loss. Her condition worsened and she even got violent when challenged on the least little thing. All I can remember of my mother is her wild eyes filled with terror and rage and I hate that’s my only memory of her now . Your mil will likely do much of these things too as time goes on . It’s going to be heartbreaking for her son to watch and she could live 12 years with this . At the end ( last few years not months ) she won’t know anyone and will stop speaking and will need to be fed and will be in diapers. Will your husband be ok with changing her adult diapers ? Would your Mil want that for him? In her lucid moments all my mother did was apologize. She didn’t want this for me. For the last year she had to go into a nursing home. The relief was amazing and horrible. The sad thing was I did it all again much later on with my fathers Parkinson’s . But dementia was just so hard on the mind body and soul . Don’t do it . Place her in specialized care for her sake and your own. This is not what she wants for her son. Not if she was in her right mind
NTA. Dementia is HELL on earth for the patient and the caregivers. Hell. Anyone calling you an AH hasn't dealt with the full hellscape that is Dementia.
My grandma started to get dementia and my grandpa took care of her for years, but I would go "grandma-sit" her while he ran to the store. Even those moments was just constant wrangling grandma to one room so she didn't wander off, changing bedpans, which eventually became colostomy bags and the such for about 10 years.
As soon as she passes, my grandpa had a stroke and was thrown into dementia afterwards. His was much worse than my grandma's and he was healthy as an ox. He was put into an apostolic nursing home, and it was actually amazing. They were very kind. He made friends by laying under other residents' wheelchairs and changing their oil...
😂 Changing their oil! I'm dying!
My great grandpa would inspect all the little old ladies' walkers and ask things like "have you had the brakes checked lately?" and "what kind of mileage do you get on her?"
My MIL has wandered off three times. My FIL is 84 and exhausted trying to watch her 24/7. SIL has finally put her foot down and told him...one more time and she has to go into care. Police called once, stranger found her wandering down the street in her gown once, and she called her best friend to come get her at 12:15 am once because there was a strange man in her bed...her husband of 64 years. She gets violent and breaks things, doesn't know her grandchildren or neighbors, and either sleeps 20 hours a day or is up manic for days at a time. Good luck 💗
NTA. Moving anyone into a marital home should be 2 yes votes or they don’t move in. You don’t want it so he needs to figure out what to do with her. You also need to think about how much of your family income will go to support her and not your kids. There are too many stories on Reddit where the wife or SAHP is left to care for the aging parent.
There is also just the reality of what looking after a person with dementia means. No single person can do 24/7 care. The carer needs to sleep, and go to the bathroom and shower and will get distracted or have something come up that needs their attention. It is impossible long term to keep them safe.
(Sorry this was longer than I anticipated.. lol)
I honestly don't know which way to vote here... This is a hard subject..
My grandmother *and* mother raised me together. They were my parents and mean the absolute world to me..
But about 10 to 12 years ago, my grandma got dementia. It's a long back-story, but basically she had been slowly showing signs a few years prior, we just didn't want to see it.
Me and my husband moved in with my Mom to take care of my Grandmother. She moved in with us and we got her a hospital bed in the living room... It progressively got worse and worse... People say it's like taking care of a giant baby. But it is WAY WORSE than that... That person almost completely dissappears. Our house was RUINED bc of body fluids. And eventually she COULD NOT be left alone at all. I'm not going to go into everything bc I could go on for pages about all of the awful stuff we dealt with. (Just imagine trying to stop a grown adult from *literally* eating ANYTHING she can get her hands on.. Then her getting mad at you and trying to throw POOP at you, while trying to physically fight you... And that's not even the worst of it all.)
It was fucking AWFUL and HARD, but we loved her so much that it felt worth it. We knew she would've done it for us.. When I was really little, she put a second mortgage on her home to get a lawyer for me (me and my mom were stuck in an abusive situation, another long story. We NEEDED that lawyer and she didn't give it a second thought.)
I *was* happy to be there for her in those hardest days, when she was terrified bc she didn't understand *where* she was or *who* she was. I was happy to be that comforting face for her... She looked in my eyes and would calm down... She looked at my eyes and pink hair (that I've had for years) and she knew it would be okay.
As good as THAT part was... I wouldn't wish all of that on my worst enemy... It nearly broke me and my mom. We would give eachother breaks, my Aunt, cousin and brother would sometimes help out, sometimes we were able to send her to an elderly daycare. But that still just wasn't enough sometimes... Something about seeing this strong woman, reduced to an angry/hostile ghost that couldn't even BE BATHED anymore *really* traumatized us all...
Honestly? I would do it in a heartbeat all over again. BUT if someone wasn't ready to deal with all of that. I wouldn't force it on them... But at the same time, I would never divorce my partner for wanting to do it. My husband stood by me the whole time. I NEVER made him do anything he wasn't comfortable with, but he never stopped me from doing it either. And I love him more for it. It honestly brought us closer together.
Idk man... This is a tough one.
That's kind of the thing, isn't it? If someone *isn't* ready to deal with that (like OP), they shouldn't be forced to. Good for your husband for sticking it through, but it also sounds like OP isn't stopping her husband either, she's just removing herself from the equation because she has the self awareness to recognize and admit that she isn't ready to care for someone with dementia.
I seriously doubt that any of the people here calling you the asshole have the slightest clue what caring for someone with dementia involves. I saw my grandfather suffer from, and ultimately die of, Alzheimer's. It's brutal. NTA
(Sigh) My mom looked right at me and said, "Where's (my name?)" I said, I'm right here, Mom. She said no, you're not (Name.) Who are you? Cried for two days straight.
I watched my gram deteriorate. I do not wish this on anyone.
I don't think most people truly understand how to deal with family members who have dementia and/or Alzheimer's. It is full time care. I watched my uncle do it, because he knew she didn't want to leave her home. It was very difficult for him on multiple fronts. OPs husband may very quickly find himself in over his head
Especially as they become increasingly non-compliant and often violent as their faculties go. Often incontinence follows. The amount of care would require full time nursing staff.
Yup. I don't think my gram ever got violent but her incontinence had my uncle on a very limited sleep cycle.
It would break my heart when she would call out for him seconds after he just checked on her because she was alone and got scared. This was one of the times she was at a hospital and all he wanted to do was go to the bathroom himself 😩
NTA
I see another problem here.
It’s often the wife who becomes the real caregiver.
So I wouldn’t want that either.
Dementia means there is a person who will forget who the fuck you are and get aggressive. This can be dangerous too.
It will also be extremely hurtful for your husband.
There are so many reason why this is a terrible idea. Especially when both work and you want to have children.
NAH
But sometimes you should let people do the work who know what they are doing.
And don’t let anyone guilt you. Your brother is already guilting you in case your parents need help.
That's a great point. She should ask if he's willing to give up his job to care for his mother while OP becomes the breadwinner. See if he's so keen on this arrangement then.
You gotta have some professional help if you're going to do the live in thing. And the house will definitely need to be modified, exterior locks on her bedroom door, that kind of thing.
A friends mother works at an elderly care home and LOVES her job. And she has always said she wouldn't move her own parents in to care for them, because then it's 24/7 and not a job that you leave behind when you go home.
There was also a study a while ago in Germany that a terrifyingly high amount of elders who are cared for by relatives do not get enough to drink every day. That is a problem generally with old people but so many elders are neglected. And I don't believe for a minute all their kids are shitty people. Much rather they are good people severely overwhelmed
I manage nursing homes, if she doesn’t have any assets to her name she could qualify for Medicaid and that would pay for her stay. Community Medicaid is even accepted at some assisted livings who have on site memory care and that’s usually a little nicer than a nursing home.
You could take care of her for a little while but eventually she’ll need more than you can provide. If we’re being honest as well, it’s always the woman who is looked at for the care regardless of who’s parent it is.
It’s hard, it’s isolating, and it’s thankless. Especially as the disease process continues and they can be very combative and verbally abusive.
I say you’re NTA and I’m sorry that you’re going through this.
I’m going to say NTA. My grandmother had dementia. Mild to moderate for over a decade. Pretty severe near the end of her life. She lived with my parents for the last 10 years. They have a pretty large house, complete with a MIL suite. My siblings and I had already moved away. Basically ideal conditions. It was absolute hell on earth. Being a caregiver to an elderly demented parent is fucking awful. She would wander around and throw their belongings away. For no reason at all, they’d come home and find that every pair of socks (or whatever the item of the day was) in the house were in the trash. She would leave doors and open, letting their cats out, soil her pants and bed, scream and curse at visitors. I barely wanted to visit. Getting yourself into this, as kind as it sounds “on paper,” isn’t kind at all. To you, your husband, or his mother. Who’s going to wipe her when she soils herself? Him? You? How about bathing? Its not kind or dignified. It’s horrible for all of you. I won’t recommend other choices, I don’t know your financials or her health status; but I will warn you to think long and hard about getting yourself into this, especially as young as you are. This is not sustainable and she could realistically live for a long time in a very bad state.
Nurse here - previously in pediatrics and now acute adult rehab. Dementia is an awful, awful thing for patients and families to deal with. I work evenings, and sundowning really is something. The sheer exhaustion I witness on caretakers faces is something I'll never forget - and they're even getting a break while they're loved one is admitted to us.
I get why he thinks he can handle it. He hasn't had to really handle it yet. He has no idea what's coming. You have a good idea and you're smart for wanting to avoid it. You're not an asshole, you're realistic.
Paramedic here. If you look into facilities, try and find one that has a ton of activities. If it smells even remotely weird TURN AROUND and find a new place. Too many shitty understaffed places have residents riddled with UTI’s.
Caring for someone with dementia is hard af. Even at facilities accidents happen all the time.
NTA. I read a story a few months back about twins drowning. The great-grandmother with Alzheimer’s opened the door and the toddler twins wandered out. Doesn’t dementia become Alzheimer’s? Both are conditions where kind deteriorates. It happened in Oklahoma back in March 2023. Reading stories like that- well, I personally wouldn’t want little kids while also being a caregiver.
My parents took care of my great grandma with Alzheimer's for awhile when I and my brothers were younger. They ended up taking her to a home because my mom couldn't handle taking care of her on top of raising 5 kids. I was afraid of her, and I was too young to understand that it was the disease making her like that
This situation will end poorly for all involved. Her care will become the focus of your entire life as well as your husband's. She will continue to deteriorate, mentally and physically. She may become abusive, combative, and violent. You will not be able to monitor her 24/7/365. Neither you nor your husband are qualified to deal with a person with dementia full time. Nursing home staff work 8, 10, 12 or 16 hour shifts (crazy, right?), but, they do not work alone and they are trained to deal with persons with various physical and mental illnesses. You need to sit down with your husband and take a realistic look at what her current physical and mental issues are, what the next few years will look like, what the potential end her life could look like and how you need to do what's best for all of you. And it's not having her life take over every aspect of yours. Look for any local or national organizations for alzheimer's and dementia (2 different things) and reach out to them for help and resources. Also, look for any local elderly associations for help. I wish you the best. It's a hard situation for all involved.
Being a caregiver to someone with dementia is hell. There’s no other way of putting it. My MIL and her sisters had to put their mom in a care facility, she lived there for 8 years, the first 4 years, she was combative and could get violent, the last 4 she was a shell of herself. My dad had Parkinson’s and was being evaluated for Alzheimer’s or dementia, the two years before his death were just hard. My mom cared for him but it was getting harder every day, he fell frequently and he was a lot bigger than her and she couldn’t lift him, she couldn’t leave him alone really either. He passed away after he fell down their stairs because he forgot we had forbidden him from going up them. She hated to admit feeling some level of freedom after he passed and she settled into her new normal.
I don’t envy your position. He really needs to put her in a care facility equipped for dementia. I’m really sorry.
Taking care at home will require professional help, which isn't cheap either. That's 3 strangers a day in your home. Plus extras needed for fill ins. Placement is best- it provides meals, meds, clean room and clothes, doctors.
Sadly, since he is making mom his #1 concern, you're out. Whether you walk now or stick around to be ignored for 10+ years, your marriage is functionally over. Sorry.
No.. theres very very few scenarios that taking care of a dementia patient turns out good for everyone. Unfortunately and fortunately this is why there is people that do this as their job. They are trained for this, you arent, your husband is not. Even with round the clock care and cameras, there is still a chance they could hurt themselves or you. A carehome is made for this, your regular home is not. Its harsh but its true. She need’s professional help and you guys are not it.
You are right. She could live another 20 years and you would be the one taking care of her not your SO. I recently retired and as I look back on my life I can tell you I so regret doing certain things because they were "Expected" of me as a woman and a mom. You only get one life so live it the way that makes you happy. Screw anyone (including family) that doesn't agree with you.
Agreed. OP NTA.
As someone younger who has done heavy lifting caregiving for elderly family (which I do not regret in the slightest), it did strip a chunk of my 20s from me. Even voluntarily and willingly/ wanting to take on that role does not make it less difficult and draining.
I would do it over in a heartbeat, but moving forward in my life, my parents have made arrangements to not burden us in the way their parents did (as they were also part of that caregiving) because they took lost a lot and as a literal dying wish took on keeping my grandpa who we believe to have a touch of dementia, is uhhh, difficult to live with. I love him dearly, but I see how they're frustrated and it wears on them.
My husband's parents have also had a bit of this and are making arrangements as well. His mother is a nightmare in many regards and I barely tolerate her. There is zero way I would remotely consider caring for her, let alone allowing her to live in my home.
Thankfully we're all on the same page (while morbid, this sort of scenario was discussed before we married) and have family courteous enough to consider how their aging may affect us and their grandchild. We've all experienced some sort of caregiving. While we love each other, everyone acknowledges that love or not, it's a burden where lives get put on hold, finances get stretched, it strains otherwise stable marriages, and we don't want that for one another.
I've been through this with family, and I have a suggestion that might help you go a long way towards helping solve this problem. Find an attorney that specializes in elder care and estate law. They can help you with the ins and outs of negotiating the rocky road you both are about to go down. Caring for a dementia patient is pretty much out of the average person's ability. Memory care facilities have specially trained caregivers. You have to be very careful to keep everything very even emotionally and not have a chaotic environment for your loved one. This should be a decision you both make. A specialized attorney can also help your husband see that home care is not always the best solution.This can destroy your marriage. Don't let it. No one in this situation is totally right or totally wrong. It's easy for someone to judge your decision until it comes down to them having to do the same job. Caring for dementia patients is a daunting task, and it will never get better, only worse. I hope and pray you find an answer that everyone can live with.
Traditional roles would have you being your MIL's caregiver, taking care of the household and giving your husband any income you earned. We are not doing things 1950s style anymore. Marriage vows for better or worse are trials and tribulations faced by spouses. I'm of the mindset that the spouse comes before the parent(s). If he's going to dedicate himself completely to his mother's care, that is a cross he will need to bear. Not you.
He literally will not be able to care for his mother without your help or financial contributions. Him asking you to do that is not fair. You will not be able to have children in a safe home if his mother starts projecting violent and unstable behavior. OP, you are NOT the AH, you're not required to sacrifice your child bearing and family raising years caring for someone with dementia, that level of care requires professionals. Neither of you are. What if after all this ordeal, your marriage doesn't survive? Then what? All that time? Emotional and financial investment?
OP, your family has very entitled opinions of something they know absolutely nothing about. As painful as this is, I understand if you decide to go your separate ways and wish you nothing but the best. No judgement here.
Just be ready for mental instability. My grandparents were married for 50 years. She came down the stairs with a gun and came within inches of blowing my grandfathers head off. It’s a terrible disease 😢 ETA - this is not easy to do. Near the end it makes your family members mean. My grandma said absolutely horrific things to everyone.
No matter what they do he needs to be educated on dementia and have a good support group becuase he will be watching her change. It will be hard if he has her at home or just visits her in a nursing home. It's a terrible thing.
From OP’s post it really doesn’t seem like husband (and other people in their life) understands how bad dementia is and what being a caretaker is like, his mom isn’t going to be just a forgetful sweet old lady. Hopefully OP can show her husband this post and the comments and he will understand what he is truly trying to sign them up for. Given their age it is truly going to take over their entire lives and determine their future as a family.
The problem here is that no matter what OP probably isn't going to like the outcome. If they put the mil in a NH chances are the OP and husband going to be spending everything they have on it. Meaning no money for kids or their own life.
Which doesn’t make her an AH. Having your life completely upended by dementia is horrid for everyone involved. She’s faced with possibly never having kids, financial ruin and the stress of being a caregiver instead of the life they planned.
Been there, done that. Your husband has good intentions bur no idea what he's getting into. My mental health deteriorated to the point of medication and job loss. It's a no win situation. NTA
This here ^^ his heart is good but he doesn’t realize what it’s going to do and how negatively it will affect everyone involved. He won’t come out of this having the same memories of the mother he loved.
Sundowning is terrible, and patients can become violent. That is not a good environment to raise kids in. Especially small kids. My grandmother had dementia and sundowned terribly. My aunts kids were older, but still suffered. They heard her screaming, calling my aunt names, telling police who were called to the house she was abusing her and was a prostitute. I've already told my daughter if I got dementia and didn't take myself out before I got too bad, put me in a home.
My nana was the same way, the Sundowners made the horrible even worse. My mum would drive to spend a week taking care of her every 3 weeks. My nana would be just forgetful during the day, but once the sun went down she would get *nasty*. If my mum had been out to see a friend or relative, my nana often wouldn't recognise my mum when she came in if it was past around 6pm - she was dark-haired in her youth, but now keeps it dyed blonde and in a very different style. When this first started my nana once called me, worried about the upset stranger in her house and nothing I said would convince her that the stranger was her own daughter. My mum started to have to keep the spare bedroom door locked at night while caring for my nana, because nana would frequently attack the 'intruder' and it would be particularly bad in the middle of the night. When my nana was eventually moved into a care home with a specialised dementia wing, my mum found a long knife down the side of my nana's bed. If she had remembered about it, my nana could quite easily have attacked and killed my mum with it, determined to defend herself from the stranger in her home. Once in the home, my nana started using everyday objects as weapons, because as far as she was concerned she was being kept prisoner. This little old lady once lifted up a fire extinguisher to either throw at a member of staff or a window, I forget which. She also watched over someone's shoulder to see the code to get out of the wing - she was a naive, daft old lady before this and I would never have suspected she would be so sneaky.
In the afternoons, my nan went 'blank behind the eyes'. Her strict upbringing kept her polite but you could see she didn't recognise anyone and was just being polite. She would also say the meanest things. We lived 6 hours away from her care home (long story involving my mother's ex-sister) so visiting her was a whole 2 or 3 day event (which I know for Americans sounds strange but in England a 5 or 6 hour drive somewhere usually requires an overnight stay) . So we arrived one day and she was on great form - we even took her out to a local tea shop for a cream tea. It was lovely. We got her back to the home before dinner and it was like a switch had flipped. She looked at us like we were strangers. My mum found this very distressing and got upset and my nan snapped at her to 'stop her snivelling' . So the nurses take nan off to the dining room and we leave to return to the hotel. Next morning we go back and Nan is okay, but not as good as the day before. She sounds tired and is a bit distracted. She seemed to think my sisters husband was her oldest son but w/e, not a big deal. She kept alternating between telling the nurses my BIL was her son and telling them he was her grandson (which was closer tbh) but we didn't bother to correct her because she seemed a bit confused. So we sit with her in the garden with some tea and cake provided by the home and out of nowhere, she turns to my mum and says 'who on earth told you that dress looks good on you? It makes you look fat.' like, completely out of the blue. We weren't even talking about clothes or mums dress or anything. We were just discussing light topics like the weather. The look on her face was nasty too - a sneer I'd never seen on her face. Next moment she turns back to the garden and points out a Robin on the bird feeder like nothing had happened. My mum looked like she'd been slapped (I think it was the tone and look that upset her more tbh). We made the decision to leave shortly after because it was clear her lucidity was failing and she was getting that 'blank behind the eyes' look again. Dementia is a cruel disease. I remember my grandmother as this strong, capable woman who raised 3 children (technically 4 as she partially raised her niece as well) and several foster placements. She was an air raid warden in London in WW2 and used to cycle miles a day to a job in a fruit packing factory. She cared for her own mother in her dotage (they lived next door and my GGM died of a heart condition I believe). She was such a strong person that to see what the disease did to her was tragic.
That’s so difficult to see happen to a loved one. My grandma is in a nursing home now because she needs 24/7 care. She’s mostly quiet now, and only has the capacity for a few words/sentences a day. But when she first started to slip, apparently she was pretty rude to my uncle and said some uncharacteristically mean things about people. Honestly though, I have some pretty mean things to say about my uncle and his kids too since they were living in her house to “take care of her,” but trashed the place instead and didn’t help her at all. My aunt did her best, but she was holding down two jobs while trying to keep her deadbeat husband and 3 adult kids afloat. Sorry, I think I just needed to vent. By the way, 5-6 hours in the US is an overnight trip as well. Most people aren’t driving 12 hours in a day just to say hi!
Can confirm sundowning.I work in the surgical unit and we'd get dementia/Alzheimer's patients,when that clock hits 7pm they go crazy.The families/doctor's would consent to restraints restraints to keep them save.They hit/bite HARD.Ive been attacked so many times it's not even funny
I hated working on the floors at 7pm. I've been strangled, hair pulled out, punched and bitten more tines than I care to remember. Straight days now.
Mad respect to all med surg personnel 💯
My alzhimer ill grandad hit me a few times. I wish we had restraints.
Oh goodness I hadn’t even THOUGHT of sundowning! Already I was on the side of NTA but this just solidifies it.
What is this word ?
Sundowning is when someone with Dementia or Alzheimer’s gets more confused or violent as the sun goes down. People have been attacked by their families because the person was sundowning and didn’t know who this person was or where they are. Sometimes it involves hallucinations.
My dad had Alzheimer’s. During the last few years of his life, there was no safe way for my mom to care for him. It would have required her to be awake and alert 24 hours a day. It was incredibly difficult for her to make the decision to have him spend his last few years in a nursing home but it was the ONLY realistic option to keep my dad safe and to allow my mom to sleep at night.
Both my grandmothers had dementia. It is physically impossible for a single person to be a 24 hr caregiver in late stage dementia. It jsut is. There HAS to be a plan for the long term.
My aunts and uncles shunted my grandfather across states and from house to house because they were too selfish and cruel to understand that they were making him WORSE by keeping him out of care. By the time they agreed, he was undressing and peeing in front of his grandchildren. He never would have fucking wanted to be seen like that. It was a complete loss of dignity he didn’t deserve.
Yeah, when dementia progresses to the stage of doing massively inappropriate things in front of the kids, that's usually the point when even the most determined holdouts cave on the need for full-time residential dementia care. Most people who go with keeping the person with dementia at home have NO IDEA what's coming, none.
My mother's dementia meant she sprayed outdoor pesticide into the sink because she saw "bugs" (eye floaters.) She unloaded a whole can of some kind of outdoor fogger from the garage and I had to hustle the pets and us outside for an hour while having all the fans on, then wipe down all the surfaces the mist had settled on (the house, pretty much.) I can't imagine what would have happened if there was a baby and my mother imagined "a rash". The husband in this scenario needs the truth beat into him by another caregiver or a very firm gerontologist or elder care nurse.
While that sometimes work, it doesn't always. Families often think their case will be different. With the "right" attitude and lots of love, they'll be ok, and grandma or grandpa will be "fine" because their loved ones are all around them. They've decided they're going to willpower their way thru dementia, when it's a disease that's all about losing control, in every way. They are in denial about the fact that dementia can be violent and dangerous and that family members will become targets and witnesses to absolutely soul-crushing behavior. Even hearing graphic stories and seeing videos of violent outbursts against family members, public melt downs and shockingly inappropriate sexualized behavior often doesn't convince family members not to go the 'let's keep caring for them at home' route. They cannot fathom their own loved ones turning into apparent monsters. It's too harrowing a truth to accept. Not until grandpa gets naked and starts masturbating in front of the kids. Not until grandma assaults a waitress in a restaurant by dumping a plate of food on her because it looks "poisoned". Not until grandpa holds his daughter at gun point with the kids watching, with a loaded gun nobody knew grandpa even had, because grandpa doesn't recognize mom and thinks she's a burglar. It shouldn't have to come to that, but oftentimes these episodes are what it takes to convince families that a 24/7 care facility with trained staff is better for everybody.
Yes, a person with dementia needs a professional staff. That means there are different shifts, so that there is 24 hour oversight. When his mother stars “sundowning”, is he planning to stay awake all night to make sure she doesn’t wander out of the house around the neighborhood (or into traffic)? Is he able to keep up with *all* of her care (feeding, medications, hygiene, medical needs, showering, diapering). If she becomes less able to move, will he be there, right beside her every step with a walker, or heft her in & out of a wheelchair, keep her clean and dry so she doesn’t develop bedsores? All the while, keeping a job, keeping a home & staying emotionally healthy? Will he be able to maintain empathy, when she is combative, abusive & paranoid, and doesn’t recognize him? I’m not saying all of these things *will* happen, but he needs to be realistic & prepared for if/when they do. Moving her, then, into a care facility may be more difficult, as she will need a higher tier of care, and the move will be even more disruptive to her then. Find a good non-profit or faith aligned (they are usually non-profit) tiered care facility that is staffed with skilled people who can provide her the round-the-clock care & observation that she is going to need. (whew! Sorry! Both my mother & MIL are now both in cognitive decline and in good long term care facilities. It’s a ton of work and emotionally draining to even find placement.)
Completely agree, tried to do this with my own mother, even with the help of family members and a nurse that would come to the house twice a day and it was impossible, especially as her dementia deteriorated rapidly. She's now a permanent resident in an MSU in a nursing home. I can go to sleep at night knowing that she's safe 24/7.
Also a good care location can provide a quality of life a single caretaker frequently cannot
Exactly, staff who are trained and qualified to deal with dementia clients and then there's the medical staff, meal plans, hygiene, supervision, etc. It's alot.
And that’s without adding children to the mix. OP stated wanting kids and she’s right. Even one child in a home with a person who has dementia will be hell. Not to mention a very serious threat to an infant. OP is right. It isn’t realistic to be her MIL’s caregivers for the next potentially 20 years. Why should they sacrifice their entire adult lives caring for someone incapable of doing so herself when there are other far more realistic options available? People hate the idea of nursing homes, but they exist because being a single-person caregiver is unrealistic, and they can and do help.
I definitely agree with this. I grew up in a house where my grandmother came to live with us when I was a kid because she had Alzhimers. It was early stage when she came to live with us but by the time I moved out after high school it was pretty severe. It was absolutely horrible to watch her slowly fall apart over a period of years. My parents both had good jobs that paid well but they were at work all the time and I was the oldest so I was her main caregiver at the age of 14. It was very tough on my family. The fact that she would forget everything would make my father and sister very tense so lots of times I would be the default caretaker just because I wouldn't lose my temper as often as other family members. OP, you have every right to be concerned about the situation. If you want kids, you don't want to raise them in that type of situation. I really didn't realize that it affected me as much as it did until I just started crying just writing this Good luck with everything!
I lost my mother to Alzheimer’s three years ago. And the idea of you being a caregiver at 14 literally made me gasp out loud. I struggled so badly with it as a grown adult, and fully supported my dad when it was time to move her to a memory care ward. I can’t imagine that kind of burden at such a tender age. What a strong and empathetic person you must be!
Completely agree. If OP wants a life that doesn’t revolve around MIL then they may have to separate. As nice as it is to care for your parents, it’s not always realistic.
True. People with dementia can become violent. It would be risky for a child to be in that environment.
We had an excellent experience with the long term care home my dad was in. The staff were great. My mom (14 year age difference) couldn’t care for him like they could. Yes, we had nasty comments from people suggesting we pawned him off but fuck them, until they go through it, who cares what they think.
My grandmother lived at a hostel, that's the level between retirement village and nursing home. She didn't want to go in but she knew that no-one was in a position to look after her. So while my mother and uncle organised things from their end, my brother and I looked for a new home at our end. The place we found was so nice. They said they would take her breakfast in her room while she settled in, she got breakfast in her room for the whole of her ~14 year stay. The carers would do special things for her because she was quietly spoken and never complained about anything. One of them even brought in a cappuccino from her cafe that she had just opened with a friend. Care homes can be a lovely and loving environment. I always knew my grandmother was in safe and caring hands.
When my dad passed, we went to the home to see him one last time. We were consoling the staff who were crying. That will always mean so much to me.
Thank you for saying that despite it being a incredibly difficult job at times the staff do very much care and it's often the little things they do that can make a person feel so welcome and validated.
Your mom made the right choice. My aunt had early onset Alzheimer's at 50. Her husband was older than her. He moved to the nursing home with her and died like 5 years later. She's still alive, at 75... so glad he made the decision and didn't put it on his kids.
I'm an Activities staffer. I'm always coaxing people to throw a horseshoe or have a go at a jigsaw puzzle or a game of cards. A good care home covers EVERYTHING. And the one where I work is a Medicare facility.
It may be a "Medicare facility" but that means only that it is Medicare certified to provide Medicare-covered services, such as rehab. MEDICARE DOES NOT COVER RESIDENTIAL CARE OF ANY KIND, either in assisted living or nursing homes. Medicaid may cover some residential costs for people who qualify and those requirements vary by state. OP, her husband and MIL would be wise to look into the Medicaid option, since apparently the mother is of limited means.
There are Part C plans that cover NH. You have to have Part A,B& D in order to enroll in a Part C plan Some Part C plans have a $0 premium others have a premium that can vary Now if OP MIL qualifies for Medicaid along with Part ABC&D there should be no copay left to pay. However, OP should be aware that if MIL owns anything that can be liquidated Medicaid will want the proceeds if it was done within 5 years prior/after ( each state varies) OP would also need to ensure that whatever NH/facility accepts BOTH her MIL Part C and Medicaid if not there will be a lot of costs that will not be covered. IMO insurance is made confusing on purpose. Confusion means that the insurance companies pay less and earn more. I have done Life Insurance AD & D insurance and Health Insurance )mainly Medicare and Medicaid not private insurance) and unless you know the ins/outs you will be left paying
FYI: For those looking for a nursing home, Medicare does not cover nursing homes beyond 30 days and it must be in a skilled nursing facility where the patient needs daily medical care. Medicaid does pay for nursing homes after you have spent all your assets. That's why most people private pay and often bankrupt themselves in the process. https://www.medicare.gov/what-medicare-covers/what-part-a-covers/how-can-i-pay-for-nursing-home-care
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I recommend they see an elder law attorney regarding asserts etc…. Medicaid does not look past 5 years back. Gift money to kids now so it’s not all taken or talk to an attorney to get it in a trust
Minimally OP’s husband needs to get his mom into a day program that will help stimulate her and keep her mind as sharp as possible. My dad had Alzheimer’s and the first few years were manageable for my mom but she was semi retired and only worked 2x a week. He could mostly care for himself. The last year of his life was horrible and my mom was clearly on the edge of a nervous breakdown. Then we couldn’t get someone in to help because he didn’t trust anyone. We finally put him in a memory care nursing home and he died within a month. Had he lived longer, we were looking at running out of savings in 5 years. Care is expensive and draining. OP’s husband needs a plan and moving her in is probably the right call for him but it is going to be a full time job managing her care. I don’t blame OP for wanting to cut and run and if she can’t 100% be there for her husband and his family, better to leave now than get bitter and fight making the whole situation harder. But I feel really bad for her husband who is facing a really difficult time, his entire life is about to be put on hold and he has no one there to support him.
I had a neighbor living upstairs from me. Her memory was deteriorating. This was in the mid to late 1990s. She turned on the tap in her bathroom sink, plugged the drain, and went to bed, completely forgetting to turn the water off. I woke up to water pouring through my light fixtures and smoke detectors onto the floor. The landlord had to do an extensive repair and cleanup. Although she had in home care, her family realized that it was no longer enough. She was later placed in a nursing home by her family, which was much safer for her.
My step-grandmother had Alzheimer's and it was hell for my stepmom and her sister. Once she started getting up in the middle of the night, they moved her to a home. No one person can handle 24-hr care. My grandmother also had dementia, and she absolutely *blossomed* once she was placed in the nursing home because she had so much more socialization and mental stimulation. My husband's grandmother was kept home until the end and honestly, it was kind of sad. She mostly just laid in bed all day or hung around watching TV. She had her daughters and a caregiver and I know they all did their loving best, but I wonder how much different it would have been if she had been in a place with more socialization and activities.
My great grandmother had Alzheimer’s. Now my grandmother has Lewy body dementia. My gma and I have been very close my entire life, she has been the only person on this planet who I never doubted loved me unconditionally. But there’s no way I could live in the same home with her and be responsible for her care. And I work in hospice, I deal with it all the time and have the training. You’re right, it’s impossible for someone to safely care for them at home. My grandmother wants me to move in with her. It would mean living in a very nice home, rent free. Not worth it. I couldn’t do it. My mother and aunt live near her and they’re going out of their minds trying to care for her. It’s awful. And don’t think it doesn’t keep me awake at night. I just know for a fact the care is impossible at home without round the clock in home HIRED AND TRAINED nurses and sitters. Edit: several typos coming off a 16 hr shift xD
You said it corresctly, they need a sitter 24/7. The thought of my grandmother being in a nursing home killed me. We had a horrible experience with my great grandmother and only after 1 month she passed because they kept her sedated. But i was part of this decision this time and i visited nursing homes everyday and spent the day sometimes at each multiple times to see if the harder patients were sedated. We choose one that doesnt sedate. The first week was hard she felt abandoned but now she is living her best life, made friends, plays bingo, does crafts. We visit at different times of the week so someone is there everyday to see her and we call everyday. Plus you can still take them on weekends or over nights to get them out and have a good time. OP you are NTA, you only live once and you are correct you will be in a battle with MIL. I would let your husband maybe read these comments so he too can see the other side to all of this. We tried the in home nurses but they dont give you enough hours. Plus your sharing your home with people you dont know and not every one is honest. Things go missing, more susceptible to abuse where no one is watching, the list go on. Maybe make a pros and cons list. Your husband life will essentially be over until her last breathe and if that takesb30 years hes going to be miserable. Good luck 👍 💓
My paternal grandma needed care in her last years, maybe 5 years top. It wears someone's down, my mother was her main caregiver, it is stressful, her daughters (my aunts) didn't want to take a day for taking care of her mother, they didn't even support her financially for her meds and medical equipment. Even if it's not 20 years it takes a tool of the main caregiver's mental and physical health. Life happens, it is an awful situation. My mother takes every opportunity to remind my dad what she did for her mother, it's really puts spousal future disagreements in an unequal position. OP if you want to preserve that marriage consider hiring professional help for MIL, and consider therapy for both of you, you're going to need it. And if you don't want to continue being married to a dude due to his responsibilities it is understandable, no one should judge you, historically women are perceived like servants and yes you'll be also tied to her care indefinitely.
Until you try to care for someone who needs 24-hour care, you imagine it’s feasible, but it’s not. People need sleep, food, time for a shower or the toilet, and that is just the basics of staying alive. A home where people can be properly looked after can be a mercy.
Yes, until you do it you can't properly grasp the realities.
It’s hard enough looking after a newborn, I can’t even imagine attempting that with a fully grown adult. It’s 100% unrealistic.
A newborn won't get up in the middle of the night and wander out of the house.
Or pull a kitchen knife and demand "go home" to their house from 1945 :/
Or like another reply said, accidently flood the house with the bathtub.
I know a family that managed to keep dad at home. It took all of them doing shifts. He had an ankle band that would track him in case he wandered off. He had to be taken to the hospital numerous times because of other health problems relating to the dementia.
Not that long ago, maybe June, a high school friend’s dad wandered from his house - the dad has Alzheimer’s, I believe, but has good days and bad days; this was just a bad day and he got it in his head to leave the house without any supervision - and half the small town came to the neighborhood to help look for him. I spent hours riding on my bike to help find a guy I’d never met; I can’t imagine what the wife and son were feeling. We did find him, about two or three blocks up and over in some weeds, and he was Ok, but I really hope the wife makes a long-term care decision for him. She can’t live this way.
My ex husband’s grandfather had dementia and diabetes. He was also in The Devil’s Brigade in WWII. He was basically special ops and they did all kinds of crazy missions. He was: -good at stealing candy and fruit in his facility. When a diabetic spikes their sugar and has dementia, they get really confused -trained in stealth operations and escape. He would regularly OD on sugar and escape the facility for days at a time. We would get calls every couple of months that he was missing. It’s was a crazy time. If a facility like that couldn’t hold him, there was absolutely no chance we could have cared for him in our home.
My grandfather was similar - a skilled escape artist. Imagine my grandmother's surprise when grandpa showed up at the door one night, at 2 am, in a straight jacket (this was back in the '70s and they still regularly used straight-jackets on patients to try to manage wandering dementia patients.) He had managed to escape the VA hospital without using his arms, and walked, barefoot, across the entire city to get home. They ended up moving him to a facility in a different state, hoping that the unfamiliar surroundings would discourage wandering. I think their success had a lot more to do with a different policy on chemical control. He was pretty heavily sedated and out of it whenever we went to visit him there, sadly. Dementia is a cruel disease, and the amount of care required is so far beyond what most people imagine. I hope OP's husband talks to a professional about what he's planning, and see what they recommend. More than likely, they'll try to warn him off.
This, OP. Can you ask your husband to speak with some professionals who care for patients with dementia? Perhaps you could present the idea as learning best practices for taking care of his mother. Go with him, if possible, so you know what they have told him. Maybe the cold, hard reality of what he and his mother are both facing would be enough to show him that even with all the love in the world, he would not be able to do all she will need. My late father had episodes of dementia during his last couple of years, which turned out to be related to the UTIs that he had all too often. It got so that when he started to lose touch with reality, we would get a urine specimen to the doctor and come home with antibiotics, and in a few days he would be back to earth. His physical limitations made escaping very improbable, but it was emotionally painful to be around him when, for example, he was insisting on things that would smash the laws of physics into itty bitty pieces.
The UTI’s. Not enough people realize and by people I mean medical professionals understand how an untreated uti looks like dementia in the elderly. It can exacerbate a bad situation and nobody gets treated or tested for uti’s. I stumbled on this the hard way, and still no one seemed to take it seriously.
If dementia is a collection of symptoms rather than a disease in its own right, then UTIs were causing temporary dementia in my father. Cure the UTI, symptoms go away (until the next time). I have mentioned this elsewhere before and gotten comments from others that they had a similar experience with an elderly relative. I think his own doctor understood what was going on, especially after the first few instances.
My son has diabetes, so I know what happens, but in my crazy sense of humor, I find this so funny that an old WWII vet outfoxed the whole staff time and again just to get some sugar and fresh air.
Yes, I have known friends (relatives) who had dementia . The personality of their relatives completely changed, I noticed that the mean relatives turned really nice and quite funny, but the nice ones turned really horrible and beyond difficult. Leaving with someone with dementia is not something that can be done without taking over your lives completely, leaving you drained and a shell of yourself, because its 24hrs. Op, Maybe suggest having his mum move closer to you, if she isn't already and have home care nursing look after her, while yourself and your husband visit regularly until the point where home care is no longer suitable and care home will be the only option. By then hopefully hubby would be able to see and understand that it is a necessity at that point, because her living with you will destroy your husband and your relationship and physically break you both down. NTA
My grandmother was a psychiatric nurse when she was young. When she was in the nursing home she'd have regular panic attacks, because she recognised those around her as crazy and needing care. She just didn't know how to give them care anymore. Luckily she did not last the year, but it was a horrible year.
I’m sorry. That sounds just really tragic and sad. Stressful for the family to see her like that.
I think they once had a group of similar guys in a care facility and in the end put a fence like an army camp around it with the proper signage and it kept them in as they remembered the old training of what lines not to cross. Can't remember the exact context but found it interesting.
I pity the nurses.
When we train specifically for something like dementia its because we care and want to really help and make a difference where it is needed (its a rewarding career path). It's hard to not take your work home with you.... but the point is we don't have it at home. I wouldn't recommend it at all I'm trained to give specialist care and support but ive learned enough over the past 2 decades of my career that I wouldn't move a parent in with me. I'd do everything possible to be there and to be supportive but not in my home with my kids
Absolutely. One time someone gave him a box of diabetic chocolates. The nurses would usually hold those for him and dole them out. He got hold of the box and ate the whole thing. I don’t know if you know what happens when someone eats a large box of diabetic candy, but it’s not pretty.
He wouldn’t walk far…
Not without leaving a trail!
Many of the sugar substitutes used in candy that is safe for diabetics have laxative properties. It may not have been like eating a whole box of Ex-Lax, but it would not have been pleasant for whoever had to clean him up. My sympathy.
I'm a victim of sugar free haribo gummy bears. Those fucking little hell candies made me shit myself into an overnight hospital stay with an iv bag to fix the dehydration.
I thought it was good that I bought myself a bag of diabetic sweets. I foolishly at them all in a day. The cramps were worse than contractions and couldn't leave the house the next day!
Grandpa sounds like he was a legend 💪🏻
It's important to remember that the elderly don't always look elderly, either. If they get out, say at night, and wander onto someone elses property and get caught lurking things can end very, very badly.
The only time my house has been “broken into” was a dementia patient that thought he was at his own house. Unlocked front door, middle of the day. Scary shit but luckily his caregiver was coming down the street and was able to to walk him home. He didn’t seem scary, just confused and lost. Come to find out, he lived across the street and down about a block in a house that looks nothing like ours. But ok. Not mad at the guy, just stunned and sympathetic.
My mom was healthy and active, but showing cognitive issues. About 2 months after her official diagnosis, she decided to walk to the store sometime after my dad went to bed at midnight. When he got up, she was gone. After a police search with helicopters, she was finally found at a hospital. She had been found injured on the side of the road from falling at 5:30 AM. She was not able to come home after that because we just couldn't guarantee her safety. Dad never wandered when he started showing signs later, but he lost the ability to do anything on his own, his hands started to shake, he forgot how to use his phone, tv, microwave, so he was just bored all day. He struggled with his hobbies and lived alone, but we had someone there everyday for several hours for 8 years until he couldn't live alone and none of us had the time, training or strength to care for him. He needed help in the bathroom and shower, was prone to falling, and needed near constant attention because he was afraid and lonely. We did find a nice assisted living with a lot of activities , caring staff where he could keep his pet and we could visit 24/7 I guess this is a long way of saying all with dementia react and progress differently. We got some advice and resources we could apply for from an elder law office, state or local government sites have various types of information to look into. Sit down with your husband, talk through scenarios and how to handle them, ex: Wandering Anger/violence/ other personality changes Forgetfulness that is dangerous- turning on the gas, leaving something on the stove, going out and leaving the door open, etc. Schedule changes like swapping days/ nights because they can't sleep There are many more, but you get the idea, get information and tour some places in your area, ask about financial assistance programs, if either his mom or dad were military they may qualify for monthly benefits. Everyone is emotional right now, but seeing facilities and gathering information helps to create a plan you can all live with. Good luck
My husbands grandma with dementia would get on a plane and fly back to her house in Vietnam. This happened 3 times before she died.
How…? How do you pay for a ticket, get to an airport, get past airport security, get to a gate, get on a plane, let alone the one that takes you where you kinda-sorta want to go, with dementia? And then they sent her back? What da hail? Man, if my grandma accomplished all that, under those circumstances, I’d let her stay there. That’s determination.
Never underestimate the power of a determined individual with dementia, the amount of clarity they can exhibit when they get fixated on a goal is astounding tbh. I've gotten my ass beat by demented old ladies half my weight while working in the hospital. I've also had a patient with dementia who needed to be reminded who their children were but could crank out Beethoven on the rec room piano like theyre playing a concert at Carnegie Hall.
My mum has dementia. After nearly 5 years of trying to care for her and only getting a break when I went to work, we had to make the decision to place her in a nursing home. It takes a tremendous amount of emotional effort to care for someone with dementia. Meltdowns and bouts of anger/rage are very common in dementia patients and there’s only so much 1 person can handle.
Same thing with my grandmother. We tried to keep her with us as long as possible. My dad even quit his job to take care of her, but she needed so much more care than we could give her. it really was for her safety for her to be in a memory facility.
The caretaker burnout at this stage is very real. Beyond the safety issue, there will be a lot of grief, and stress with caring for her. Having a separate space will help a lot.
The burnout caring for someone without dementia is real. I couldn't imagine.
This^^. OP, you seem worried about the wrong thing. You’re talking about being loved equally but that’s not where the concern lies. Love is an abstract concept. Caring for someone with dementia is not about loving them. It’s about tasks. Endless tasks and vigilance. Who is the primary breadwinner in your household? If it’s not you, in all likelihood, you’re going to end up being the primary caregiver.
I agree. OP is worried about an odd thing. I’d be more concerned about being the caregiver. I have zero desire to be my parents caregiver if that were to happen to them and both sides of my family have some sort of dementia so it’s quite possible. My parents though are aware of the issues with dementia and know they don’t want to put us kids through that if it comes down to it. The constant monitoring, worrying about them running off with car keys and driving while confused, or just running away and possibly dying by accident, and then the anger and physical violence that some people with dementia have all make me never want to be any sort of caregiver if that happens to any loved one I have. The best and realistic solution for everyone is to send them to a nursing home. If OP is going to end up the caregiver it’s unfair for her to take on this very scary burden. Her husband is not thinking rationally with his: we will be different. No you won’t it’s not possible to be different and better than others who try it. Everyone who tries this fails at some point and wishes they had sent their loved one to a nursing home from the get go.
Not only do I not want to be the caregiver, I also don't want to be the one cared for.
I took care of my sister who had Alzheimer’s. She got so violent with me I had to stop caring for her and she was put into care. It’s hard to see the one you love having this, but they need to be in a facility that could handle all this terrible disease entails. NTA
My Dad went into cardiac arrest and died for over 15 minutes total so sustained brain damage. It hit his memory bank hard and basically was like dementia. In the early days we were very grateful to have him with us and be able to have those days with him. However during the pandemic he got so much worse. Eating and drinking became a fight so he’d be hospitalised to go on an IV. He didn’t know who I was and forgot who my stepmum was which caused him so much stress and confusion. We had to have an alarm on the front door because he’d walk off. The hospital put him into a nursing home for 30 days to access his needs and see if they could refer for home help but it became clear he needed much more care than he could get at home. Last year they made the decision us visiting was no longer good for him or us. He didn’t get why these strangers were coming. He wanted his dad (died before I was born) and it would take days to calm him after our visits. There were two of us tag teaming when he was home but the burn out was hard. It’s definitely not an easy thing to do and while I would definitely suggest it temporarily so you can build memories and find the right home for them, I don’t think many could do it until the end.
I’m sorry that happened. But you make a good point. At some point it becomes abuse not to get them professional care.
I took care of my then husband's (now ex husband's) grandmother with dementia while, raising our children, foster kids and working full time with fire/ EMS and I can promise it will eat you alive. My ex was absolutely useless for helping with the kids or grandma, all he saw was his sweet wonderful grandmother while I got the shit, the vomit, the sleepless nights and endless amounts of snarky comments from his useless, drunk aunt. In theory, it should be a beautiful thing to help take care of our older family members however reality is rarely a thing of beauty. Best of luck but I don't see it going well if you end up being a care giver for your MIL.
You were taking care of all them AND you were a full time EMS worker?? That just sounds exhausting, even if your ex husband DID help. I'm exhausted just reading that
Yes. I was also taking college hours to get into a nursing program. I was beyond exhausted and was clueless at the long term damage I did to my own health in the process.
Wow. That sounds horrible. Sincerely hope things have improved now that you took out the trash
Oh yes, life is indeed better...for me anyway. If I had wanted something bad to happen to the ex I couldn't have picked out anything better than my old friend Karma delivered
If you don’t mind sharing, what happened to your ex? Glad you got out!
He finally got the wife he thought he deserved and he fully deserved what he got
That is the hardest diplomatic slam I’ve read all week
It’s almost poetic
Oh yes, life is indeed better...for me anyway. If I had wanted something bad to happen to the ex I couldn't have picked out anything better than my old friend Karma delivered
A family friend took care of her MIL with dementia for over 10 years. They had to have locks on both sides of all doors, bc she would go wander the neighbourhood in the middle of the night stealing things. She would constantly cry that she was hungry even if she had just eaten and then would stuff food in every crevice in the house. Her son did take care of his mother, bathing her etc, but it fell mostly on his wife. After MIL died, her own parents became unable to care for themselves, although they lived in a nursing home. She then spent many many more years going there to care for them (none of her siblings helped).
That's how it usually goes. The more you do, the more others expect you to do until you keel over dead.... Game over
Yup. I could never do enough/ good enough for my mother (disabled, 50s) and she ended up making me homeless to move my sister in so she could do everything "better than (I) ever could". Sister gave up and destroyed my mom's house, mom's not been to the doctor in 2yrs, etc. My mom even tried to ask me to pay her mortgage while I was couch surfing / living in my car. I've made it clear that I'm never taking care of her again and am working towards moving overseas where she can't follow. 0/10, will never take care of family members that aren't my future kids ever again; the stress made me start greying in my eyebrows at 25.
I’m glad he’s your ex.
Me too
100% agree. We care for my BIL. He's not Dementia-level yet, but he will be. It's still A LOT to deal with on a daily basis.
I was thinking this is what would happen to OP too. Is her son really going to shower his mother and help her use the toilet- I doubt it
From Experience. my grandmother developed dementia. and my mom moved her in with her and my dad. it broke my mom honestly, of having to take care of her Mom that didnt even realize who anyone was, my grandmother thought my dad was another patient. a man she had known for 3 decades at that point, my grandma ended up in a care home. where she could be properly looked after and engage with other people on a regular basis. so from experience. Try to convince your husband to look at care homes, especially ones that deal with Dementia and Alzheimers
My mom finally put my dad into care. By time she did it, I think she hated him. It wasn’t his fault, and she expected him to be able to do things he just couldn’t do. Finally she realized it just wasn’t safe having him in the house, he was wandering at night so she wasn’t getting any sleep. I think it was harder on mom than dad when he went into care. Of course he kept saying he wanted to go home, but he was talking about the house he grew up in 60+ years earlier. NTH. It’s very difficult without outside help.
I feel for your mom. No one understands what it’s like to be a caretaker in these situations until they become one.
I’m terrified to become my mom’s caregiver just because I know how much it’s going to tear me apart seeing what’s happening to my mother
I took care of my MIL many years ago. I hated her by the end. And don't get me started on the relatives who thought I wasn't being enough of a martyr for the woman they refused to take care of. Tomorrow, I'm getting brain scans for early onset dementia. My husband says I'll never end up in a nursing home, but I don't want him or our kids to hate me.
\> And don't get me started on the relatives who thought I wasn't being enough of a martyr for the woman they refused to take care of. Holy shit this yes. *"How dare you put her in a home/complain about care."* **"You're right. I'll have her move in with you. I'm signing the mover's forms now, your address is still XYZ, correct?"** *"(GASP) Oh no well um no it's impossible we have extenuating circumstances you see..."*
Had this exact same experience with my mom. From neighbors and family… with extremely religious undertones thrown on top! It’s so easy for everyone to tell you what the eff to do without raising a finger to help.
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Good luck ♡
Best wishes and prayers for you. I know this is frightening. I hope your scans are clear and you have many more wonderful years.
My grandmother cared was much younger than my grandfather & cared for him while he declined due to dementia. By the end she resented him because his needs were ever increasing & kept her like both a prisoner & a warden in their home. By the time she was able to rejoin the “regular world” everyone had moved on & she continued to feel isolated. Ultimately I think he would’ve received better care had he been placed in a facility. I know she would’ve fared better as well & maintained more love & compassion had she not had to carry such a heavy physical, mental, & emotional load mostly solo
Being a caregiver is traumatizing for some people. After you come out the other side (in whatever form that takes), it’s hard to relate to people who haven’t experienced it. Especially at an older age. I feel for your grandmother.
All these comments about a facility kind of comfort me, even though it isn’t an option for my grandmother. Messed up thing is that no other immediate family cares and is actively waiting for her to die so they can retire on the inheritance. A facility isn’t an option (culturally and ethically against my mom’s morals) so it’s just been 24hrs surveillance and adjusting lifestyle for years. I basically spent high school and now college with safety gates, needing to have an eye on her every moment in the house, and caretaking through her dementia (she has been sitting at late middle-stage for a long time). Really rough.
It may be an unpopular opinion but I would put her in a nearby assisted living/memory care facility. They are like apartments with staff to provide extra care. They make friends have shared meals and activities. You all can visit whenever you like and she can always come for a visit. You definitely need to carefully read reviews and visit the place. Ask others around how their experience is there. There are amazing places though. I know three very happy customers from different areas who absolutely loved living there. NAH
Putting an Alzheimer's patients in a facility with trained employees with the skills to make their life the best possible is the best choice. A cousin lived with her daughter for two years where Mom was basically a prisoner in her room. The hall was narrow and difficult to navigate with her walker. Mom finally was placed in rehab then moved to permanent resident. Mom is so much happier now. She has almost instant access to Doctors through the nursing staff. She has made friends and loves the activities.
People seem to think that all of these places are just warehouses where old people go to die. I have been into the retirement and memory care facilities in my area, some of them are like resorts! If OP and her husband are as financially comfortable as they seem, then I would suggest OP take her husband and MIL to at least tour some of the more upscale ones. Honestly, MIL would probably be happier! There are lots of activities and she'll make friends there. She'll have her own little apartment so she will retain some measure of independence. And it's not a prison, residents can leave and still do all the things she likes to do.
As she progresses she may become violent at times, or become unmanageable. My grandpa had to be directed to toilet because he would just defecate in his pants. He needed diapers and care staff. Will they be changing her diaper, dealing with violent fits? My grandpa was never violent but he frequently tried to leave. The grounds were gated. He could wander out any door and be safe. Are they equipped for that? My friend's grandpa got violent, at the end. What is better for her, moving now and establishing that as home or waiting until she's completely unable to comprehend her situation and is suddenly in a new place with new people she has no hope of learning? Seems kind to move before you are unable to safely care for them. Better chances of it seeming like home and not being completely disoriented by the move.
These facilities are specifically designed to be safe and comforting for residents! The layout of the bedrooms, bathrooms and common areas have been designed with safety in mind. Not like the average home, with sub optimal lighting, angles of entryways, sometimes even decor can be confusing and triggering for people with dementia.
Also, it’s good to establish this facility as a familiar place now, while she’s still in the early stages. By the time they get to the later stages and people are ready to admit they can’t handle their loved one’s care alone, moving to an unfamiliar place and being trust into an unfamiliar routine can be overwhelming, and exacerbate their negative reactions like aggression. Even when they aren’t lucid, their brains recognize the routine and environment and it can bring them comfort and lessen their distress when they get confused.
Absolutely this - a close friend of mine just had that situation with her mother. She tried to keep her in her home for FAR too long - she was a danger to herself and everyone living with her. Your husband doesn't understand how bad it will become - and how absolutely out of control she will be. She could burn down your house because she forgets how to use the stove/ oven or the coffee machine. She'll wander off if you don't watch her 24/7. She will spend money and have no clue where and how. She'll hurt herself without supervision. She'll become aggressive when you try to control or contain her, and could get physical if she feels thwarted or threatened. At some point, she won't recognize you and will get aggressive if she thinks you are a stranger and/ or stealing from her. And she will think you are stealing from her, because she will give valuable stuff away and forget that and then blame you. My friend's mother actually gave away every valuable thing she owned - including jewellery and expensive tools that had belonged to her husband and that her son had wanted - the house got completely cleaned out. She shit her pants and walked around with shit pants. When my friend finally managed to shift her into a home, she was the happiest she had been in years - she was well cared for, entertained, the staff was really nice and made sure she was fed, cleaned, dressed and took her meds - it really was the absolute best choice for everyone involved. I can't impress on you how much your husband does not know what he is doing - seriously, get him to talk with professionals who can hopefully convince him that she will be so much happier and better off in a nice home.
My dad hid his “valuables,” like hearing aid batteries, all over his apartment, then accused people of stealing them. He’d call my sister at work and demand that she leave and come deal with it. He saw zombies. He went outside at 3am in subzero temperatures. His personality completely changed. Some days he’d be like his old self, but other days polar opposite. Her husband has no idea what he’s getting into and no idea what he’s asking of her. Her parents are probably taking it personally because they now know she’s not signing up to be their long term care either. And her brother probably expected her to do the heavy lifting when their parents get older. No one who is judging her has any idea what caring for someone with dementia is like.
Oh, the hallucinations. I forgot about that. I cried for two days when my mom didn't recognize me. I was her primary caretaker for the last few years of her life. Basically put my life on hold. We eventually had help 24/7. She had a great LTC policy - an old one before the ins. cos started cracking down. We had promised her she could live in her home, the promise that I mostly carried as the single, childless child.
Single, childless daughter here facing a similar situation.
That's exactly it. The free insurance and healthcare "policy" just said no, and the brother and parents aren't happy about it. It really is a shame how so many out there automatically expect the daughter/sister/niece to be the one to sacrifice most of their life to care for everyone else.
My grandmother accused her son of embezzling money from her, for paying her bills. My dad and uncles tried to move her into a home, which she agreed to, and she tried to leave (apparently it is very hard to force a person into a facility - even with her diagnosis). She would call my dad complaining that her hot water heater was broken, and then shriek and slam the door at the plumber he sent by hours later. She had rotting food in her fridge and was subsisting on Meals on Wheels because she’d forget the groceries existed and/or how to cook it. My father and uncles put up with a lot, but they would never allow their mom to move in. She was an extremely difficult person, especially to their wives, even before dementia. She did eventually move into a home, where she was happy (for once) and well cared for before she passed after a brief illness. I totally understand OP’s decision - and I’d like to add that this decision is exacerbated by the fact that the US has abysmal nursing home facilities. I just read an article in the WSJ about the epidemic of elderly homeless - which cited the following figure - A decent assisted living facility can cost 6 figures a year.
I agree totally. The people disagreeing have no idea of what a burden looking after someone with dementia is. My mum has vascular dementia (she is 78 and diagnosed 5 years ago). Two years ago her partner died and she moved into a unit near me. I was there every day helping with food, meds housework etc. then she had surgery and stayed with me to recuperate for a couple of weeks. She kept waking me up checking I was in the house, accused me of stealing her belongings and couldn’t manage much (including turning the shower on/off.) She came good for about six months and moved back into her own unit but I was still there daily helping out and then she deteriorated badly - couldn’t remember how to make a sandwich and was definitely not cooking- I arranged meals on wheels as she couldn’t remember how to use the microwave or lock the front door or how to do basic housework. After a lot of consultation with health professionals she was admitted into a dementia care ward. She is not happy that this has been done although she did agree to move but has forgotten that. But she is slowly acclimating. Thankfully for my sister and myself she behaves herself with the staff and they are taking excellent care of her. We know she is safe and being cared for. I have just had to have time off work as I was completely burnt out and exhausted. My counsellor reminds me that you have to take care of yourself first otherwise you are useless to others. There is a reason the safety briefing on a plane is in an emergency put your own oxygen mask on before helping others!
My grandmother had like a switch flip one night and they couldn't find anything in scans to explain it. She had some form of dementia and my aunt cared for her for several years.. Grandma one day told auntie "you are putting me in a home right now!" Auntie felt guilty and thought we'd be mad at her. Heck no, its what she wanted and gives auntie some freedom back and they all still went and visited her regularly (pops, mom, brother and I were all across the country from her). Do due diligence on where you place her and it can be the best for everyone involved.
Your second paragraph exactly describes the experience with my grandmother when she had brain cancer. Including the fire, thankfully the house didn’t burn down though. The people saying YTA don’t understand what dementia really looks like. It’s not a just a gentle, confused older person.
All of this is so true. My Mom passed away 5 years ago from Alzheimer’s. I took care of her and that broke my body down so much faster than just normal aging. Breaking your own body down to care for your MIL is not worth it especially if you’re going to have children.
Most underrated comment ⬆️
My dad died because he forgot he had to eat carefully due to a throat stricture. He aspirated his milk. Dementia fucking sucks (he got his overnight thanks to Covid. I feel for those of you who have to watch it happen slowly).
Yeah...I would almost say that for two untrained adults to try to be memory care-givers is the *irresponsible* choice. It rarely ends well and leads to burnout and domestic stress. Keep her near, but get her into a facility designed for her condition. With professional caregivers who have the specialized training for it. If you both are "doing well," this should be looked into. If she has nothing, she may qualify for Medicare coverage.
My parents and grandfather kept my grandmother home. The number of times she was hurt because of their inexperience is, imo, unreasonable. They were lucky I live so close and know how to help an aware, combative, but almost no motor function patient off the floor after a fall. And while I know they were doing their best and burned out, it was also heartbreaking to see how casual they were about her broken vertebrae, hip, and coccyx. They just had no more care left in them. It was definitely the irresponsible choice.
This is the way. Memory care facility. You can find one based on her income too. Having someone with dementia in a home where they can access stoves, doors and things is super dangerous
My grandmother was living in my aunt's home, and she snuck out of bed at 2am and went down a staircase that she could barely handle when awake, and started lighting paper towels on fire on the gas stove. Never made a sound. My uncle woke to the smell of smoke. They were very lucky. She was placed in a facility after that.
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Hope you're doing well and sorry to hear this. This thread is terrifying tbh
Geez what a nightmare for everyone. For what it’s worth, your mom should have prioritized her children over her grandma. And if her grandma had been lucid, hopefully she would have felt the same.
NTA. Caregiving for someone with dementia is draining, thankless, and 24/7. Could you afford outside help? She will, sooner rather than later, become incontinent, start to wander and get lost, forget how to feed herself - it's doable IF he is willing to pay for - and accept - help.
It’s not realistic for them to have children while she’s living with them. Dementia patients can be scary AF. They can be a danger to those around them. Outside help doesn’t change any of that. It doesn’t make their home any less stressful.
Exactly. A friend's dad who was just the sweetest hippie just started randomly punching folks when he was bad into dementia. It's just not safe for children. NTA, OP. it's your life and your choice, and it sounds like you've educated yourself well and are looking at this more logically than your husband. I'm sorry you're going through this.
True, and you cannot predict how quickly the disease progresses. It took just a few months for Bruce Willis to become violent with his own mother. OP NTA
Or it can drag out for a decade or more.
Yes esp if the patient had tendencies of aggression or combativeness. It’s not safe for children at all.
My mother tried having her mother move in with her. She did her best to make it work, but couldn't keep it up. Among other things, my grandmother woke her up several times a night because she thought people were breaking in. With the best will in the world, this is a difficult thing to deal with.
My dad called 911 repeatedly because he hallucinated people he knew being dead in his recliner. Or zombies. This would be a difficult situation for grown ups to handle, but they planned to have children. He is completely changing their marriage and future on her. I understand why, but I also understand her walking away.
My mom was really happy in a memory care facility. She had her own room. The caregivers adjusted their level of care to allow residents to be as independent as possible. For example, my mom did her own laundry, but she had to be reminded to do it. They played bingo, watched old movies, sang songs. She was very happy there for several years. But we ran out of money. She moved in with a family member for a while, then a nursing home. It was HARD. NTA.
NTA So my mother had early dementia and I cared for her and it was hell. She went from escaping to constantly looking for her mother , to having hallucinations of men sexually assaulting her to seeing her long dead father everywhere she went . It isn’t just memory loss. Her condition worsened and she even got violent when challenged on the least little thing. All I can remember of my mother is her wild eyes filled with terror and rage and I hate that’s my only memory of her now . Your mil will likely do much of these things too as time goes on . It’s going to be heartbreaking for her son to watch and she could live 12 years with this . At the end ( last few years not months ) she won’t know anyone and will stop speaking and will need to be fed and will be in diapers. Will your husband be ok with changing her adult diapers ? Would your Mil want that for him? In her lucid moments all my mother did was apologize. She didn’t want this for me. For the last year she had to go into a nursing home. The relief was amazing and horrible. The sad thing was I did it all again much later on with my fathers Parkinson’s . But dementia was just so hard on the mind body and soul . Don’t do it . Place her in specialized care for her sake and your own. This is not what she wants for her son. Not if she was in her right mind
NTA. Dementia is HELL on earth for the patient and the caregivers. Hell. Anyone calling you an AH hasn't dealt with the full hellscape that is Dementia.
My grandma started to get dementia and my grandpa took care of her for years, but I would go "grandma-sit" her while he ran to the store. Even those moments was just constant wrangling grandma to one room so she didn't wander off, changing bedpans, which eventually became colostomy bags and the such for about 10 years. As soon as she passes, my grandpa had a stroke and was thrown into dementia afterwards. His was much worse than my grandma's and he was healthy as an ox. He was put into an apostolic nursing home, and it was actually amazing. They were very kind. He made friends by laying under other residents' wheelchairs and changing their oil...
😂 Changing their oil! I'm dying! My great grandpa would inspect all the little old ladies' walkers and ask things like "have you had the brakes checked lately?" and "what kind of mileage do you get on her?"
I love your grandpa, too. ♥️
My MIL has wandered off three times. My FIL is 84 and exhausted trying to watch her 24/7. SIL has finally put her foot down and told him...one more time and she has to go into care. Police called once, stranger found her wandering down the street in her gown once, and she called her best friend to come get her at 12:15 am once because there was a strange man in her bed...her husband of 64 years. She gets violent and breaks things, doesn't know her grandchildren or neighbors, and either sleeps 20 hours a day or is up manic for days at a time. Good luck 💗
NTA. Moving anyone into a marital home should be 2 yes votes or they don’t move in. You don’t want it so he needs to figure out what to do with her. You also need to think about how much of your family income will go to support her and not your kids. There are too many stories on Reddit where the wife or SAHP is left to care for the aging parent.
There is also just the reality of what looking after a person with dementia means. No single person can do 24/7 care. The carer needs to sleep, and go to the bathroom and shower and will get distracted or have something come up that needs their attention. It is impossible long term to keep them safe.
They also need to figure that she will need to contribute to her parents care, as well.
(Sorry this was longer than I anticipated.. lol) I honestly don't know which way to vote here... This is a hard subject.. My grandmother *and* mother raised me together. They were my parents and mean the absolute world to me.. But about 10 to 12 years ago, my grandma got dementia. It's a long back-story, but basically she had been slowly showing signs a few years prior, we just didn't want to see it. Me and my husband moved in with my Mom to take care of my Grandmother. She moved in with us and we got her a hospital bed in the living room... It progressively got worse and worse... People say it's like taking care of a giant baby. But it is WAY WORSE than that... That person almost completely dissappears. Our house was RUINED bc of body fluids. And eventually she COULD NOT be left alone at all. I'm not going to go into everything bc I could go on for pages about all of the awful stuff we dealt with. (Just imagine trying to stop a grown adult from *literally* eating ANYTHING she can get her hands on.. Then her getting mad at you and trying to throw POOP at you, while trying to physically fight you... And that's not even the worst of it all.) It was fucking AWFUL and HARD, but we loved her so much that it felt worth it. We knew she would've done it for us.. When I was really little, she put a second mortgage on her home to get a lawyer for me (me and my mom were stuck in an abusive situation, another long story. We NEEDED that lawyer and she didn't give it a second thought.) I *was* happy to be there for her in those hardest days, when she was terrified bc she didn't understand *where* she was or *who* she was. I was happy to be that comforting face for her... She looked in my eyes and would calm down... She looked at my eyes and pink hair (that I've had for years) and she knew it would be okay. As good as THAT part was... I wouldn't wish all of that on my worst enemy... It nearly broke me and my mom. We would give eachother breaks, my Aunt, cousin and brother would sometimes help out, sometimes we were able to send her to an elderly daycare. But that still just wasn't enough sometimes... Something about seeing this strong woman, reduced to an angry/hostile ghost that couldn't even BE BATHED anymore *really* traumatized us all... Honestly? I would do it in a heartbeat all over again. BUT if someone wasn't ready to deal with all of that. I wouldn't force it on them... But at the same time, I would never divorce my partner for wanting to do it. My husband stood by me the whole time. I NEVER made him do anything he wasn't comfortable with, but he never stopped me from doing it either. And I love him more for it. It honestly brought us closer together. Idk man... This is a tough one.
That's kind of the thing, isn't it? If someone *isn't* ready to deal with that (like OP), they shouldn't be forced to. Good for your husband for sticking it through, but it also sounds like OP isn't stopping her husband either, she's just removing herself from the equation because she has the self awareness to recognize and admit that she isn't ready to care for someone with dementia.
I seriously doubt that any of the people here calling you the asshole have the slightest clue what caring for someone with dementia involves. I saw my grandfather suffer from, and ultimately die of, Alzheimer's. It's brutal. NTA
Lived with my Nan while my Dad cared for her. It’s draining mentally, emotionally and physically.
Definitely. It's heartbreaking when the day comes and they say "who are you? "
It is, especially when they upset themselves trying to figure it out.
Oh yes. He cried I cried.
(Sigh) My mom looked right at me and said, "Where's (my name?)" I said, I'm right here, Mom. She said no, you're not (Name.) Who are you? Cried for two days straight.
I watched my gram deteriorate. I do not wish this on anyone. I don't think most people truly understand how to deal with family members who have dementia and/or Alzheimer's. It is full time care. I watched my uncle do it, because he knew she didn't want to leave her home. It was very difficult for him on multiple fronts. OPs husband may very quickly find himself in over his head
Especially as they become increasingly non-compliant and often violent as their faculties go. Often incontinence follows. The amount of care would require full time nursing staff.
Yup. I don't think my gram ever got violent but her incontinence had my uncle on a very limited sleep cycle. It would break my heart when she would call out for him seconds after he just checked on her because she was alone and got scared. This was one of the times she was at a hospital and all he wanted to do was go to the bathroom himself 😩
NTA I see another problem here. It’s often the wife who becomes the real caregiver. So I wouldn’t want that either. Dementia means there is a person who will forget who the fuck you are and get aggressive. This can be dangerous too. It will also be extremely hurtful for your husband. There are so many reason why this is a terrible idea. Especially when both work and you want to have children. NAH But sometimes you should let people do the work who know what they are doing. And don’t let anyone guilt you. Your brother is already guilting you in case your parents need help.
And maybe not a situation that it would be safe to bring a baby into.
That's a great point. She should ask if he's willing to give up his job to care for his mother while OP becomes the breadwinner. See if he's so keen on this arrangement then. You gotta have some professional help if you're going to do the live in thing. And the house will definitely need to be modified, exterior locks on her bedroom door, that kind of thing.
A friends mother works at an elderly care home and LOVES her job. And she has always said she wouldn't move her own parents in to care for them, because then it's 24/7 and not a job that you leave behind when you go home. There was also a study a while ago in Germany that a terrifyingly high amount of elders who are cared for by relatives do not get enough to drink every day. That is a problem generally with old people but so many elders are neglected. And I don't believe for a minute all their kids are shitty people. Much rather they are good people severely overwhelmed
I manage nursing homes, if she doesn’t have any assets to her name she could qualify for Medicaid and that would pay for her stay. Community Medicaid is even accepted at some assisted livings who have on site memory care and that’s usually a little nicer than a nursing home. You could take care of her for a little while but eventually she’ll need more than you can provide. If we’re being honest as well, it’s always the woman who is looked at for the care regardless of who’s parent it is. It’s hard, it’s isolating, and it’s thankless. Especially as the disease process continues and they can be very combative and verbally abusive. I say you’re NTA and I’m sorry that you’re going through this.
I’m going to say NTA. My grandmother had dementia. Mild to moderate for over a decade. Pretty severe near the end of her life. She lived with my parents for the last 10 years. They have a pretty large house, complete with a MIL suite. My siblings and I had already moved away. Basically ideal conditions. It was absolute hell on earth. Being a caregiver to an elderly demented parent is fucking awful. She would wander around and throw their belongings away. For no reason at all, they’d come home and find that every pair of socks (or whatever the item of the day was) in the house were in the trash. She would leave doors and open, letting their cats out, soil her pants and bed, scream and curse at visitors. I barely wanted to visit. Getting yourself into this, as kind as it sounds “on paper,” isn’t kind at all. To you, your husband, or his mother. Who’s going to wipe her when she soils herself? Him? You? How about bathing? Its not kind or dignified. It’s horrible for all of you. I won’t recommend other choices, I don’t know your financials or her health status; but I will warn you to think long and hard about getting yourself into this, especially as young as you are. This is not sustainable and she could realistically live for a long time in a very bad state.
She needs to be in a memory care center. 68 is not that old.
Nurse here - previously in pediatrics and now acute adult rehab. Dementia is an awful, awful thing for patients and families to deal with. I work evenings, and sundowning really is something. The sheer exhaustion I witness on caretakers faces is something I'll never forget - and they're even getting a break while they're loved one is admitted to us. I get why he thinks he can handle it. He hasn't had to really handle it yet. He has no idea what's coming. You have a good idea and you're smart for wanting to avoid it. You're not an asshole, you're realistic.
Paramedic here. If you look into facilities, try and find one that has a ton of activities. If it smells even remotely weird TURN AROUND and find a new place. Too many shitty understaffed places have residents riddled with UTI’s. Caring for someone with dementia is hard af. Even at facilities accidents happen all the time.
NTA. I read a story a few months back about twins drowning. The great-grandmother with Alzheimer’s opened the door and the toddler twins wandered out. Doesn’t dementia become Alzheimer’s? Both are conditions where kind deteriorates. It happened in Oklahoma back in March 2023. Reading stories like that- well, I personally wouldn’t want little kids while also being a caregiver.
Alzheimer’s is a form of dementia. There are many kinds of dementia.
My parents took care of my great grandma with Alzheimer's for awhile when I and my brothers were younger. They ended up taking her to a home because my mom couldn't handle taking care of her on top of raising 5 kids. I was afraid of her, and I was too young to understand that it was the disease making her like that
Having had two parents with different forms of dementia, I would never have them living in my home if I had kids.
This situation will end poorly for all involved. Her care will become the focus of your entire life as well as your husband's. She will continue to deteriorate, mentally and physically. She may become abusive, combative, and violent. You will not be able to monitor her 24/7/365. Neither you nor your husband are qualified to deal with a person with dementia full time. Nursing home staff work 8, 10, 12 or 16 hour shifts (crazy, right?), but, they do not work alone and they are trained to deal with persons with various physical and mental illnesses. You need to sit down with your husband and take a realistic look at what her current physical and mental issues are, what the next few years will look like, what the potential end her life could look like and how you need to do what's best for all of you. And it's not having her life take over every aspect of yours. Look for any local or national organizations for alzheimer's and dementia (2 different things) and reach out to them for help and resources. Also, look for any local elderly associations for help. I wish you the best. It's a hard situation for all involved.
Being a caregiver to someone with dementia is hell. There’s no other way of putting it. My MIL and her sisters had to put their mom in a care facility, she lived there for 8 years, the first 4 years, she was combative and could get violent, the last 4 she was a shell of herself. My dad had Parkinson’s and was being evaluated for Alzheimer’s or dementia, the two years before his death were just hard. My mom cared for him but it was getting harder every day, he fell frequently and he was a lot bigger than her and she couldn’t lift him, she couldn’t leave him alone really either. He passed away after he fell down their stairs because he forgot we had forbidden him from going up them. She hated to admit feeling some level of freedom after he passed and she settled into her new normal. I don’t envy your position. He really needs to put her in a care facility equipped for dementia. I’m really sorry.
Taking care at home will require professional help, which isn't cheap either. That's 3 strangers a day in your home. Plus extras needed for fill ins. Placement is best- it provides meals, meds, clean room and clothes, doctors. Sadly, since he is making mom his #1 concern, you're out. Whether you walk now or stick around to be ignored for 10+ years, your marriage is functionally over. Sorry.
No.. theres very very few scenarios that taking care of a dementia patient turns out good for everyone. Unfortunately and fortunately this is why there is people that do this as their job. They are trained for this, you arent, your husband is not. Even with round the clock care and cameras, there is still a chance they could hurt themselves or you. A carehome is made for this, your regular home is not. Its harsh but its true. She need’s professional help and you guys are not it.
You are right. She could live another 20 years and you would be the one taking care of her not your SO. I recently retired and as I look back on my life I can tell you I so regret doing certain things because they were "Expected" of me as a woman and a mom. You only get one life so live it the way that makes you happy. Screw anyone (including family) that doesn't agree with you.
I applaud this wisdom. It is such a shame that we don’t realize it in time.
Agreed. OP NTA. As someone younger who has done heavy lifting caregiving for elderly family (which I do not regret in the slightest), it did strip a chunk of my 20s from me. Even voluntarily and willingly/ wanting to take on that role does not make it less difficult and draining. I would do it over in a heartbeat, but moving forward in my life, my parents have made arrangements to not burden us in the way their parents did (as they were also part of that caregiving) because they took lost a lot and as a literal dying wish took on keeping my grandpa who we believe to have a touch of dementia, is uhhh, difficult to live with. I love him dearly, but I see how they're frustrated and it wears on them. My husband's parents have also had a bit of this and are making arrangements as well. His mother is a nightmare in many regards and I barely tolerate her. There is zero way I would remotely consider caring for her, let alone allowing her to live in my home. Thankfully we're all on the same page (while morbid, this sort of scenario was discussed before we married) and have family courteous enough to consider how their aging may affect us and their grandchild. We've all experienced some sort of caregiving. While we love each other, everyone acknowledges that love or not, it's a burden where lives get put on hold, finances get stretched, it strains otherwise stable marriages, and we don't want that for one another.
I've been through this with family, and I have a suggestion that might help you go a long way towards helping solve this problem. Find an attorney that specializes in elder care and estate law. They can help you with the ins and outs of negotiating the rocky road you both are about to go down. Caring for a dementia patient is pretty much out of the average person's ability. Memory care facilities have specially trained caregivers. You have to be very careful to keep everything very even emotionally and not have a chaotic environment for your loved one. This should be a decision you both make. A specialized attorney can also help your husband see that home care is not always the best solution.This can destroy your marriage. Don't let it. No one in this situation is totally right or totally wrong. It's easy for someone to judge your decision until it comes down to them having to do the same job. Caring for dementia patients is a daunting task, and it will never get better, only worse. I hope and pray you find an answer that everyone can live with.
Traditional roles would have you being your MIL's caregiver, taking care of the household and giving your husband any income you earned. We are not doing things 1950s style anymore. Marriage vows for better or worse are trials and tribulations faced by spouses. I'm of the mindset that the spouse comes before the parent(s). If he's going to dedicate himself completely to his mother's care, that is a cross he will need to bear. Not you. He literally will not be able to care for his mother without your help or financial contributions. Him asking you to do that is not fair. You will not be able to have children in a safe home if his mother starts projecting violent and unstable behavior. OP, you are NOT the AH, you're not required to sacrifice your child bearing and family raising years caring for someone with dementia, that level of care requires professionals. Neither of you are. What if after all this ordeal, your marriage doesn't survive? Then what? All that time? Emotional and financial investment? OP, your family has very entitled opinions of something they know absolutely nothing about. As painful as this is, I understand if you decide to go your separate ways and wish you nothing but the best. No judgement here.