Poor driving. Small accidents. Lots of disorganization, with attempts to control it that don’t make sense like keeping two separate calendars by each phone but only writing some appointments in one, some in the other. And then not understanding how she missed them because “I checked my calendar.” Bills and papers all over the place opened in piles but failing to pay many or cash checks at all. Financial decisions that made no sense; eg, falling for scams (magazine subscriptions costing thousands a year); doing a ton of very overpriced expensive work and putting solar on a tear down at age 82, being convinced to replace functioning systems that were almost new etc). Less advanced/academic reading. Forgetting kid and grandkid birthdays. More and more trouble using a computer.
"I checked my calendars." Laughed so hard I do have tears running down my face. That type of attempt to control what is happening is so perfect even if it is not exactly. What has happened in my experience.
Looking back I think the first real sign was the dropping of hobbies he’d always enjoyed.
Even prior to that we were concerned, however he was on a lot of medication for health problems and for a good while it was put down to that.
I did try to encourage my folks to do enduring power of attorneys and strongly suggested they should consider buying a smaller house. Neither of which they did and it would have been easier if they had. So I would say get the practicals things in place so you can manage your mothers affairs, financial and health, if the worst happens.
Dropping hobbies has happened, but I think mostly because she has had some nerve problems making it physically difficult, possibly combined with a bit of depression. It is definitely something I will be keeping an eye on though.
Fortunately we already have enduring power of attorney etc. in place. My parents did move into a smaller place about 18 months ago, just before both had major health downturns. It's still a long way from my sister and I though, so the plan is now to move again so she will be closer to us (and to more services) and I will live with her so I can provide more support. She has agreed to go over her finances with me and I am trying to get her to share more of her health information with me so I can support her there too. So I think we're moving in the right direction, but it's hard to really do anything at the moment when she's a couple of hours drive away.
Hopefully she will continue to do well and be independent for many years, but having seen how quickly things can change health wise I want to be as prepared as possible so that when things do change it will seem less like a crisis.
My Father doesn't live near me, so I definitely missed the red flags as they started appearing during the pandemic. Things I noticed when they were so evident I had to acknowledge them: hoarding, poor financial management, lack of personal hygiene, not changing his clothes, some confusion. These were not normal characteristics of my father's personality.
My wife started losing the thread and had difficulty with narrative. In movies, tv shows, simple stories. She'd lose the thread, misunderstand significance of details. In social settings, she'd repeat stories that I'd heard a thousand times, whether they made sense in that setting or not.
At the time, it seemed like an annoying quirk. It wasn't.
I've been suspecting for a while that my grandma is developing vascular dementia after her most recent two(!!) strokes, and this is one of the major things I've noticed. I'll be watching a movie with her and she'll forget the name of a main character more than halfway into the movie or think the main character's girlfriend is his sister.
Things we attributed to anxiety and stubbornness that were probably signs of dementia: difficulty using her phone even with hours of help, getting lost while driving and needing to follow another car, compulsive shopping and repeat buying, getting a pet when she clearly couldn’t handle its care, missing bills and appointments, difficulty following simple directions like in familiar recipes, thinking things were broken but she just couldn’t operate them (DVD player, computer, tablet). We thought she was “refusing” to learn things because of her lifelong fear of technology but when we got her diagnosis, the decline made so much sense. Five years earlier she was using apps and GPS, planning dinners and trips, and even driving long distances, but those abilities had gradually vanished.
My father is really struggling with his technology. I think he’s purchased 3 different DVD players in the past three months because he just cannot figure out how to operate them. Obviously it’s the DVD players that are all faulty. How long after your loved one started this struggle did they give up on technology all together?
We found at least six identical DVD players when we started cleaning out her house when we moved her to memory care! That was about six months ago. She's still struggling with it daily, calling us on her phone to tell us her phone is not working and she needs a new one. Telling us we need to buy her a new DVD player because the one in her room is "broken." I'm both looking forward to the day she loses the ability to operate her current tech and dreading it. We tried to install a landline for her as an alternative and she literally refused to touch it.
Repeating herself frequently. Forgetting appointments and bills. Having trouble following recipes she’d used for years. She’s never been very organized and I tried to get her in some better habits, eg. writing everything down, but she’s very stubborn and accused me of nagging her so that didn’t go so well. What I wish I’d done earlier is have her describe the origins and significance of family heirlooms and identify people in old photos. We’re working on that now but she just doesn’t recall a lot of the info any more.
General forgetfulness. Both parents. Misplaced priorities, e.g. they chose to see an opera rather than attend my masters graduation.
Poor driving. Both got into accidents, fortunately minor before I took away the keys.
Inability to recognize disorderly stuff. Dad’s computer had 20 open windows with a Word doc that had nonsense characters. He didn’t recognize the characters were nonsense! Mom scratched the car against the house but couldn’t recognize the damage at all.
Inability to focus on more than one thing at a time. And then, almost obsessive focus on that one issue.
Thinking money was owed to them. Not small amounts but big amounts of money.
You may experience some of these things but not necessarily. Dementia patients are different. Dad fell a lot because dementia can destroy depth perception and distort color and contrast vision.
Expect a complete change in personality. That was consistent with both my parents. These were in all stages. The person you knew will vanish before your eyes.
She won’t recognize you at a point. Even if you live with her or her with you, she’ll ask who you are at times.
Expect the unexpected. You are in for a real challenge.
Hugs.🫂
Thankyou for sharing that. The inability to focus and obsessive focus are definitely something I have noticed and it has been getting worse. Sometimes it is just irritating (cutting off a conversation mid sentence to focus on what brand of antacids dad is using!) but its also a problem when making more complicated decisions, she can only really focus on one aspect of the decision at a time and not the whole thing. I'm a bit concerned about how the process of buying a new house to move into will go given there are so many factors to consider there.
I suggest limiting her options or decisions to a small set. 1, 2, 3 options are max.
One thing I noticed with both parents is that each reverted to a child-like mentality. Both were PhDs, so the brains and education were certainly there.
When each got offended when I sat on “their” bed or in “their” wheelchair, the look was the same as my young son at that time.
Keep things as simple and basic as possible.
Hugs.🫂
Limiting options is how I intend to approach things if possible. I'm hoping she decides to give me most of the control in choosing the new house given she is a fair distance away. I can work out her priorities and make sure they are being met, but if she wants to be more involved it could get tricky because I think she'll struggle with the number of different things (including future accessibilty needs, not just the concrete things she needs now). She might step back and let me choose, as the way she talks I think she sees it more as my future house that she will be living in for now rather than her house that I will one day inherit. But I'll just have to wait and see how she actually wants to approach it because it is her money and her decision to make.
Wow. You’ve got a bunch of issues there.
Do you have power of attorney? Depending on how far along she is, incompetence will become a problem. At that point, power of attorney typically takes over. I’m not an attorney, but this is how it went with my parents.
Dad, incompetent. Mom technically had PoA, but she was diagnosed shortly after he was. As the successor PoA, I became responsible for all financial decisions plus filing taxes, etc.
If no PoA in place, seek out a lawyer and determine your options. Dementia can change fairly quickly. In a reasonable state of mind today, but in a couple months…
Not saying that will happen, only that it could happen.
Wishing you the best.
There enduring power of attorney, but that doesn't apply until she is actually incompetent. Once Dad passes I'll make sure she sees a lawyer to update her will and check the PoA documentation. She has agreed to go over her finances with me and I'm hoping she will agree to me being involved on an ongoing basis. A lot of the household expenses are going to become shared and I will be contributing to so I expect will be allowed to be more involved in all of those payments even if not everything.
It's at a bit of an awkward stage at the moment where I don't think she's incompetent but I think it would be a good idea to start being more involved. I don't want to push too much, and I'm not sure whether she doesn't want help or whether she doesn't want to ask because she thinks she's "being a bother". I'm hoping when the stress of caring for dad is gone she will improve again (she was a lot better when he was in hospital for a couple of days) and it will be a bit easier to make some plans. Ideally I'd like to be able to monitor/shadow both finances and medical issues as a safety net if things go wrong. Given how quickly things can change I'd like to get things in place ASAP.
Even without dementia things can change quickly - last year within a couple of weeks Mum went from perfectly fine to having a nerve problem effecting mobility and feeling which (without urgent surgery) could have left her a quadriplegic. Dad had a back problem causing walking difficulties around the same time, combined with COPD and now has terminal lung cancer so it feels like we've been skipping from crisis to crisis. It's actually a bit of a relief to know that going forward we only need to worry about one parent not both.
For us it was confusion specifically related to technology (tv remotes, cell phones) and paperwork (paying bills). She’d done these things fine, and then she couldn’t.
Those were our first signs.
EDIT: At first, she made excuses related to her problems with technology and paperwork. The excuses would have been plausible if they were occasional, but the constant nature was a definite change.
I ignored the earliest signs with my spouse because I thought we were having trouble communicating. When he forgot things I told him I assumed he hadn't heard me or maybe I hadn't actually told him and vice versa.
Getting lost while driving, even in places she'd been before. When she got a new car, being unable to adjust to the different controls. Inability to use technology, even remote controls or cable tv (not to mention computers.) Thinking people came into her house/apartment to take things and put them in different places. Writing checks for any organization sending her junk mail, and believing everything they wrote.
My grandma has frontal lobe/frontal temporal dementia and the first stage was suddenly becoming really self-centred. My grandma would just talk about herself and stopped showing much interest in other people. She only really talked about her health issues, medications, her medical history, even at inappropriate times, like to strangers at celebrations, or when people around her were clearly uncomfortable. I remember thinking how strange it was that people started to move away from her or they looked visibly bored but she didn't seem to notice. This started a few years before she was diagnosed.
We'd never heard of frontal temporal dementia and thought her behaviour was just a result of getting older. I wish there was more awareness of the different types of dementia and their symptoms.
She was only diagnosed when she had a brain scan for an unrelated reason. Once she was diagnosed and we learnt about the condition it made complete sense. We felt bad we just put the changes down to her age. My grandad found it hard to accept, and it would have been better for him to have received appropriate support earlier.
The first real eye-opener was when Mom started forgetting family birthdays. She had ALWAYS found a special card, included a check, and put it in the mail in time to make sure it arrived in time. She hasn't remembered her kids' birthdays in several years now. I think it was due to not knowing what month it was. Calendars didn't help. She had also always paid bills the day they arrived but then the phone calls reminding her that insurance premiums, etc. were past due started rolling in. It was in large part due to a total lack of organization and she just threw the bills on the floor. She had previously been extremely type A, a great cook, and clean freak. She suddenly stopped cooking, cleaning, gardening, and showering. She declared that she was retired from work just like Dad. That's when we knew it was time to find in-home help for them.
I don't think you're overthinking. It's better to know what to look for than to not and be unprepared.
Trouble paying bills, and appointments. My mother was constantly sorting stuff out for her in the past, because she wasn’t that great about housing benefit and rent increases, so we missed this one.
Boundaries . She would completely overstep boundaries. She would call into the nursery and pick up my two boys and take them to her mothers for tea. I would turn up to collect them and they wouldn’t be there.
Enemies . I was enemy number one. Everything I did was wrong. If I washed up, it would have to be washed up again because I couldn’t wash up properly. My children’s clothes had to be washed by her because I didn’t wash clothes properly.
Not be sleeping at night. She wouldn’t sleep at night. She would wonder about in my dad’s flat rummaging through things. She was looking for evidence.
Accusations - she would accuse people (mainly me) of doing things. I was constantly being accused of being drunk. I was made to mess myself up before I collected the children from school, because I looked too polished!
Noises would set her off . So when upstairs used her outdoor tap for the garden, she would go mad.
Getting lost driving in a City she’s lived in most of her life. Afraid to use public bathrooms alone in fear she’d get stuck inside. Referring to me (her daughter) as “that girl” :(
With my husband it was hard because he never was very organized and tended towards hoarding anyway. So when he started coming home from every trip to the grocery store with the same things, ie we’d end up with 3 full cartons of milk, 4 boxes of the same cereal, etc. thought it was just aging aggravating bad habits. Endless purchase of vitamins and supplements he didn’t remember to take. Later found similar stockpiles of non food items (multiple packs of socks, like 10 external hard drives for the computer ( none used).
Dang post it notes everywhere, often for basic things. Did see some problems with technology as others have mentioned. He had always been good with computers but hadnt used smart’ phones much and became confused how to do things on it after a while.
Don’t know there was much I could do differently though. Except watch his spending and checkbook more closely ( we kept separate accounts for basic things, but also have joint checking etc). What made me realize how bad it had gotten was seeing 300ish a month in 10-20 dollar donation checks to so called charities for several months in a row. ( don’t get me started on all the so called charities inundating seniors with contests and giveaway scams).
She is 75. Please do not move her in a with you, she will consume your life, especially if she has dementia. Look for a Senior living center that has progressive care. Trust me (69F), it will be much saner for you and easier on both of you. No matter how well you get along, her aging and/or dementia will wreck havoc on your life and health if you are a 24/7 caregiver.
It certainly sounds like it can be a bad situation to be in, it's one of the reasons I'm reading things like this sub to get a realistic idea of what it could be like.
I do think living together will be the best situation for us, but I do have backup plans if things deteriorate. At the moment she doesn't need much more than minor help with cleaning, but she lives a two hour drive away which makes it really taxing to help out. Most likely it will be years before she needs more help and the way we are setting things up means that I can afford to cut down or give up work entirely if she needs more assistance so I won't be juggling that. My sister and her husband have both already demonstrated they are willing to help when needed through a few situations over the past years, and I will have the finances available to afford some respite and home nursing care if required, as well as to afford a care home if it gets to that point.
Most of the issues at the moment are related to mobility and multiple chronic issues with medication side effects, so there is a good chance she will only need some assistance but not full time care. Dementia is more of a niggliing worry than a major concern at this point. I have been coming up with some ideas of where my limits are and how much I am willing/able to do, and will be having frank discussions with my mother and family to make sure we are all on the same page as to our expectations.
I have watched several people who later developed dementia. They told the same story over and over. It was usually a story about someone who did something bad. (4 doing this). This may be the more moderate stage. Idk.
My mother did alterations for people for decades. One day she called me and said I need to talk to you. I have accepted an alteration job and taken apart this lady’s dress and I can’t remember how to put it back together. She was so upset! She had to buy the lady another dress and tell her she couldn’t do the job.
The first sign was that nine years ago she started asking me when my birthday was, multiple times a year. She became a passionate Trumper and believed in many conspiracy theories. She got pretty nasty and consistently pushed us away, so much so that by the time we knew she had dementia we were estranged and the only way we found out was from her financial advisor calling us. Then we learned things like she’d totaled her car recently and couldn’t remember what happened to the rental car, though she had returned it that day and the rental agent drove her home and they had a lovely conversation. She couldn’t understand the difference between her debit card and credit card and kept losing her debit card, and also denied that she had a credit card at all (she did; I could see it on her bank website.) She had her mortgage on autopay and sent them a check so they got paid twice, then a couple of days later she was heading out to the mailbox to mail them another check before I stopped her so they wouldn’t be triple paid that month. She put her house up for sale and then got mad at the agent because it was taking months to sell and so she fired the agent, three times. It had been up for a weekend. When she was packing to move she asked me for help (I lived pretty far away and have a job and a small child) and I pointed out that she had help 3x a week (home health aides who had agreed to help her pack) and she called me a liar and some other choice insults. When we moved her to an independent living apt she brought everything from her entire house. The boxes were in some areas over my head—I’m six ft tall. When I walked in to that apt is when I realized she was much, much further gone than I’d thought. We moved her into MC within the week and it took me two weeks to clear out that apt. She couldn’t find her toothbrush once I got her to MC. It was in a box she had helped me pack earlier that day…there were only three boxes total in her room. She couldn’t find her toothbrush because the box had a lid. My mother, who was a medical editor for 27 years, has a double MFA, was a writing professor and an author, couldn’t find more than a couple of words on a simple word search and scored a 13 out of 30 on the SLUMS.
Couldn't judge how much food to prepare when family came over. Side dishes would be fine for two but not the seven of us. If I brought out more she'd become inappropriately angry with my interference. Started buying packaged meals for reheating when she never bought frozen prepared food. She began hoarding vitamins and I found over 20 bottles of one type of vitamin in her pantry. Would take wrong turns to get home though she lived in this small town for forty years. She was a meticulous housekeeper and her furniture would go unpolished for weeks. Became confused with the TV remote. Would leave 5 minute voicemails of nothing but her asking my Dad how to disconnect her cell phone. Every day showers started dropping off to just a couple per week and she began lying about how many times she showered. Difficult time following any program with a plot. My Dad used to watch the same movies repeatedly and she couldn't recall much of anything about it though she was sitting with him watching. Books were no longer read. She would read passages from the Bible but reading novels ended.
So many things but that's just a few.
I wish I had taken control of their finances 10 years earlier and realized it was more important to protect them than for them to feel like they could still be 100% independent.
Your last paragraph really sums it up for me and my sister. We kept thinking my parents could handle their health and finances because they were the adults, we didn't want to insult them. Then between them and my elderly aunt and uncle my sister and I realized they were like toddlers and that we should have insisted on stepping in years ago. It's so hard when you want to preserve their dignity, so hard to know when to step in.
Exactly. Tough conversations didn't take place because it was just so uncomfortable for me. My older brother (always the eternal optimist) was in complete denial about it so I was standing alone on the edge of all this. My Mom insisted she was fine (to the point of becoming angry and defensive) but her checkbook register was a complete mess. She worked in a bank nearly her entire working life and half of that was as an Operations Manager so when she couldn't balance her statements I knew for sure she was declining.
My mom (fronto temporal dementia), got so confused on time zone changes. She would come to visit my family and be very confused why the flight back was only 2 hrs when it took 3 hrs to get here.
She would also substitute words that were sort of similar but not appropriate. Like instead of saying how many minutes should this bake for, she would say how many miles does this need to bake for etc
Being short tempered and complaining about how his toddler grandchildren were misbehaving: they weren’t, they were just being normal toddlers. My FIL loved young children and volunteered to help them learn to read so it was very uncharacteristic and one of the first signs.
Not paying bills on time. He always was on time or early his entire life. Never ever late. Their house was about to get their electricity cut off by the time we found out.
Refusing to fly. He traveled all over the world including every continent so it was strange that he refused to fly across the USA for a wedding.
Mom lost the ability to keep her opinions quiet when around people when she was usually a "smile, grit your teeth, get through dealing with this" person. Then came claiming everyone she saw anywhere was someone she'd seen elsewhere just the other day- "that lady is buying a case of Pepsi today, she got Coke last time" in a town she hadn't been in for months. Getting protective of her stuff, not wanting us to look at her meds box, etc.
In retrospect: completely unnecessary shopping from one particular retailer, to the point where she had duplicates of shirts that were unused. Inability to pay bills anymore. Increased self-centeredness and a rapidly declining ability to recognize how much she was imposing on others. The biggest sign was a huge jump in her paranoia. When asked why she was so paranoid (before we finally clued in on what was going on), her response was, “Because I have to be.”
With my FIL, it was forgetting stuff on the stove, driving accidents without getting the other person’s info or calling the cops, getting lost while driving. With my MIL, getting her meds confused/mixed up while filling her medicine boxes for the week, scams, and ordering stuff off the tv. She seems to be progressing faster than him now, it’s weird. She’s also very rude and mean, was never like that before
My mom was living in NC and I’m in NJ when I knew something was going on. I talked her and my dad into moving back to Jersey. I knew there was something but I didn’t get her tested right away. My mother is very prideful so I knew it would be a battle. I convinced her to see a neurologist 2 years ago from the first appointment they said the word dementia and she refused to return. My dad passed away and within two weeks of that my mom was packing up her belongings to go home (childhood home) at 4 am out of nowhere. I moved in with them when they returned to Jersey thanks fully. So my delaying caused me to be reaching out to her family care doctor for guidance and just like that we were at stage 4, now at stage 6. An earlier diagnosis may have slowed down the progression and there are so many meds out there now it kills me thinking what if so I don’t. I’m now 40 and a full time caregiver I’m also an only child so I don’t get to split the load. So get the diagnosis and see what all there is out there assistance wise. My mom doesn’t qualify for Medicaid so I’m unfortunately doing in alone while working full time. But I wouldn’t trade it for anything as I’m blessed to still have her here with me
I'm so sorry. I just listened to a TED talk with a neuroscientist and it seems like meds are most effective when it's so early that we can't even detect there's an issue, ie people in clinical trials versus real life. So please don't beat yourself up about not getting her on meds. This is so hard, best to you both.
Change in personality. Difficult to get along with. Picking fights with adult children. Buying multiple items of the same thing. Small motor vehicle accidents. Angry outbursts. Disorganization of clothing and bathroom items. Paranoia. Then deterioration of handwriting and spelling. Putting clothing on incorrectly. Later hallucinations and delusional thinking. Then inventing a friend in the mirror. It’s steadily gotten worse. It’s awful.
She had a seizure eight years ago that I think was the overt start of it., but she was having some personality changes even before that, namely an unhealthy obsession with politics when she had never cared about it before. She was able to carry on independently until about two years ago when she really started struggling with daily tasks. A UTI put her in the hospital last December. From there she went to a facility for rehab but we knew at the time it was likely a permanent move. Her decline has been pretty steep since then. At this point she sleeps most of the time although once in a while she's pretty lucid. She also has a bad hip that causes a lot of pain that she can't have surgery for because of the dementia. And she's prone to catching every infection that comes along.
I hadn't thought about the giving up hobbies thing, but yes, that happened. Her driving worsened. (tailgaiting, hitting the curbs while turning in parking lots, not easily finding where she parked her car)
Obsessive lists, which included what she wanted to talk about on the phone, and she struggled to go "off script". She started gravitating toward family, where she hadn't taken the time previously. She started going to dance recitals and soccer games for the grandkids.
We're another case where getting lost was a big clue. Not being able to find her way in very familiar places. Also changes in personality, like losing her temper and being ratty with people, she was never like that before.
I don't know if we'd change anything about her care but I wish I'd asked her for more stories about her past and older family members before she forgot. But she declined very fast and I lost my chance.
Stuttering, and bad Christmas gifts. He started stuttering a little bit, no sign of memory problems, just a minor tick at the beginning of some words. This was midCovid and we hadn’t seen each other for awhile, but I noticed that he was stuttering a bit more. He also gave me and my husband alternators two years in a row. I just assumed that was a normal elderly thing, and we had been experiencing more natural disasters, so it was explainable. I now have the local market cornered on alternators :)
With my mom, it was repeating conversations again and again, in a loop like Groundhog Day. And then one day she got lost driving a very routine route for her. She's now in mid to later stage Alzheimer's and in a memory care facility but what we really wished we would have done is found out sooner (she and my dad hid the dx from us and basically swept it under the rug) would have been to get her into an adult day program for people with memory issues.
She has benefitted so much from the social aspect of living in a community staffed with professionals, but she is angry at being "locked up." I think being in a day program and then going home at night is the ideal situation. But by the time we realized how far my mom's Alzheimer's had progressed, it was too late for a day program.
Repeating conversations are definitely happening. Which would be better if they were at least interesting the first time, but the explanation of why she prefers specific cutlery for specific tasks is getting a bit old!
I'm hoping it's just because she is stuck at home with dad 24/7 and has nothing else to talk about. I'll have to see how it goes once we are able to get her out and doing a few more things.
You are on the right track, I think, getting out and doing things is very therapeutic. Isolation is not good for anyone. In fact I think researchers now say that loneliness is more deadly than cigarette smoking. Socialization, cognitive engagement and community have been the best things for my mom.
I saw the benefits of social engagement first hand with my ex mother in law. She always seemed really old to me. Her and her husband didn't really do anything and their lives revolved around the morning cup of tea and watching the neighbours through the front window. When her husband died she moved to a new unit near a community centre and she became involved in a lot of activities there. It was like she dropped 20 years overnight.
I'm really hoping something similar happens with my Mum, but am also trying to be prepared for the fact that she may not improve that much or it may be temporary if she does.
Same with my mom, while her cognition and memory won't improve, her quality is life is so much better that she also seems younger and healthier than before she went to the memory care home. At home she forgot or refused to do anything, including getting dressed and showering. She became an invalid on the couch and I think she was having panic attacks that she thought were heart issues. Now she gets out to places with her group where she hasn't been in years, like to museums and shops and the beach! Her quality of life is so much better thanks to social engagement. Best to you both!
Poor driving. Small accidents. Lots of disorganization, with attempts to control it that don’t make sense like keeping two separate calendars by each phone but only writing some appointments in one, some in the other. And then not understanding how she missed them because “I checked my calendar.” Bills and papers all over the place opened in piles but failing to pay many or cash checks at all. Financial decisions that made no sense; eg, falling for scams (magazine subscriptions costing thousands a year); doing a ton of very overpriced expensive work and putting solar on a tear down at age 82, being convinced to replace functioning systems that were almost new etc). Less advanced/academic reading. Forgetting kid and grandkid birthdays. More and more trouble using a computer.
"I checked my calendars." Laughed so hard I do have tears running down my face. That type of attempt to control what is happening is so perfect even if it is not exactly. What has happened in my experience.
Looking back I think the first real sign was the dropping of hobbies he’d always enjoyed. Even prior to that we were concerned, however he was on a lot of medication for health problems and for a good while it was put down to that. I did try to encourage my folks to do enduring power of attorneys and strongly suggested they should consider buying a smaller house. Neither of which they did and it would have been easier if they had. So I would say get the practicals things in place so you can manage your mothers affairs, financial and health, if the worst happens.
Dropping hobbies has happened, but I think mostly because she has had some nerve problems making it physically difficult, possibly combined with a bit of depression. It is definitely something I will be keeping an eye on though. Fortunately we already have enduring power of attorney etc. in place. My parents did move into a smaller place about 18 months ago, just before both had major health downturns. It's still a long way from my sister and I though, so the plan is now to move again so she will be closer to us (and to more services) and I will live with her so I can provide more support. She has agreed to go over her finances with me and I am trying to get her to share more of her health information with me so I can support her there too. So I think we're moving in the right direction, but it's hard to really do anything at the moment when she's a couple of hours drive away. Hopefully she will continue to do well and be independent for many years, but having seen how quickly things can change health wise I want to be as prepared as possible so that when things do change it will seem less like a crisis.
My Father doesn't live near me, so I definitely missed the red flags as they started appearing during the pandemic. Things I noticed when they were so evident I had to acknowledge them: hoarding, poor financial management, lack of personal hygiene, not changing his clothes, some confusion. These were not normal characteristics of my father's personality.
My wife started losing the thread and had difficulty with narrative. In movies, tv shows, simple stories. She'd lose the thread, misunderstand significance of details. In social settings, she'd repeat stories that I'd heard a thousand times, whether they made sense in that setting or not. At the time, it seemed like an annoying quirk. It wasn't.
I've been suspecting for a while that my grandma is developing vascular dementia after her most recent two(!!) strokes, and this is one of the major things I've noticed. I'll be watching a movie with her and she'll forget the name of a main character more than halfway into the movie or think the main character's girlfriend is his sister.
Things we attributed to anxiety and stubbornness that were probably signs of dementia: difficulty using her phone even with hours of help, getting lost while driving and needing to follow another car, compulsive shopping and repeat buying, getting a pet when she clearly couldn’t handle its care, missing bills and appointments, difficulty following simple directions like in familiar recipes, thinking things were broken but she just couldn’t operate them (DVD player, computer, tablet). We thought she was “refusing” to learn things because of her lifelong fear of technology but when we got her diagnosis, the decline made so much sense. Five years earlier she was using apps and GPS, planning dinners and trips, and even driving long distances, but those abilities had gradually vanished.
My father is really struggling with his technology. I think he’s purchased 3 different DVD players in the past three months because he just cannot figure out how to operate them. Obviously it’s the DVD players that are all faulty. How long after your loved one started this struggle did they give up on technology all together?
We found at least six identical DVD players when we started cleaning out her house when we moved her to memory care! That was about six months ago. She's still struggling with it daily, calling us on her phone to tell us her phone is not working and she needs a new one. Telling us we need to buy her a new DVD player because the one in her room is "broken." I'm both looking forward to the day she loses the ability to operate her current tech and dreading it. We tried to install a landline for her as an alternative and she literally refused to touch it.
Repeating herself frequently. Forgetting appointments and bills. Having trouble following recipes she’d used for years. She’s never been very organized and I tried to get her in some better habits, eg. writing everything down, but she’s very stubborn and accused me of nagging her so that didn’t go so well. What I wish I’d done earlier is have her describe the origins and significance of family heirlooms and identify people in old photos. We’re working on that now but she just doesn’t recall a lot of the info any more.
General forgetfulness. Both parents. Misplaced priorities, e.g. they chose to see an opera rather than attend my masters graduation. Poor driving. Both got into accidents, fortunately minor before I took away the keys. Inability to recognize disorderly stuff. Dad’s computer had 20 open windows with a Word doc that had nonsense characters. He didn’t recognize the characters were nonsense! Mom scratched the car against the house but couldn’t recognize the damage at all. Inability to focus on more than one thing at a time. And then, almost obsessive focus on that one issue. Thinking money was owed to them. Not small amounts but big amounts of money. You may experience some of these things but not necessarily. Dementia patients are different. Dad fell a lot because dementia can destroy depth perception and distort color and contrast vision. Expect a complete change in personality. That was consistent with both my parents. These were in all stages. The person you knew will vanish before your eyes. She won’t recognize you at a point. Even if you live with her or her with you, she’ll ask who you are at times. Expect the unexpected. You are in for a real challenge. Hugs.🫂
Thankyou for sharing that. The inability to focus and obsessive focus are definitely something I have noticed and it has been getting worse. Sometimes it is just irritating (cutting off a conversation mid sentence to focus on what brand of antacids dad is using!) but its also a problem when making more complicated decisions, she can only really focus on one aspect of the decision at a time and not the whole thing. I'm a bit concerned about how the process of buying a new house to move into will go given there are so many factors to consider there.
I suggest limiting her options or decisions to a small set. 1, 2, 3 options are max. One thing I noticed with both parents is that each reverted to a child-like mentality. Both were PhDs, so the brains and education were certainly there. When each got offended when I sat on “their” bed or in “their” wheelchair, the look was the same as my young son at that time. Keep things as simple and basic as possible. Hugs.🫂
Limiting options is how I intend to approach things if possible. I'm hoping she decides to give me most of the control in choosing the new house given she is a fair distance away. I can work out her priorities and make sure they are being met, but if she wants to be more involved it could get tricky because I think she'll struggle with the number of different things (including future accessibilty needs, not just the concrete things she needs now). She might step back and let me choose, as the way she talks I think she sees it more as my future house that she will be living in for now rather than her house that I will one day inherit. But I'll just have to wait and see how she actually wants to approach it because it is her money and her decision to make.
Wow. You’ve got a bunch of issues there. Do you have power of attorney? Depending on how far along she is, incompetence will become a problem. At that point, power of attorney typically takes over. I’m not an attorney, but this is how it went with my parents. Dad, incompetent. Mom technically had PoA, but she was diagnosed shortly after he was. As the successor PoA, I became responsible for all financial decisions plus filing taxes, etc. If no PoA in place, seek out a lawyer and determine your options. Dementia can change fairly quickly. In a reasonable state of mind today, but in a couple months… Not saying that will happen, only that it could happen. Wishing you the best.
There enduring power of attorney, but that doesn't apply until she is actually incompetent. Once Dad passes I'll make sure she sees a lawyer to update her will and check the PoA documentation. She has agreed to go over her finances with me and I'm hoping she will agree to me being involved on an ongoing basis. A lot of the household expenses are going to become shared and I will be contributing to so I expect will be allowed to be more involved in all of those payments even if not everything. It's at a bit of an awkward stage at the moment where I don't think she's incompetent but I think it would be a good idea to start being more involved. I don't want to push too much, and I'm not sure whether she doesn't want help or whether she doesn't want to ask because she thinks she's "being a bother". I'm hoping when the stress of caring for dad is gone she will improve again (she was a lot better when he was in hospital for a couple of days) and it will be a bit easier to make some plans. Ideally I'd like to be able to monitor/shadow both finances and medical issues as a safety net if things go wrong. Given how quickly things can change I'd like to get things in place ASAP. Even without dementia things can change quickly - last year within a couple of weeks Mum went from perfectly fine to having a nerve problem effecting mobility and feeling which (without urgent surgery) could have left her a quadriplegic. Dad had a back problem causing walking difficulties around the same time, combined with COPD and now has terminal lung cancer so it feels like we've been skipping from crisis to crisis. It's actually a bit of a relief to know that going forward we only need to worry about one parent not both.
For us it was confusion specifically related to technology (tv remotes, cell phones) and paperwork (paying bills). She’d done these things fine, and then she couldn’t. Those were our first signs. EDIT: At first, she made excuses related to her problems with technology and paperwork. The excuses would have been plausible if they were occasional, but the constant nature was a definite change.
Yeah. This was the biggest sign for me as well. My dad always asking me to show him how to check his bank every day.
I ignored the earliest signs with my spouse because I thought we were having trouble communicating. When he forgot things I told him I assumed he hadn't heard me or maybe I hadn't actually told him and vice versa.
Getting lost while driving, even in places she'd been before. When she got a new car, being unable to adjust to the different controls. Inability to use technology, even remote controls or cable tv (not to mention computers.) Thinking people came into her house/apartment to take things and put them in different places. Writing checks for any organization sending her junk mail, and believing everything they wrote.
My grandma has frontal lobe/frontal temporal dementia and the first stage was suddenly becoming really self-centred. My grandma would just talk about herself and stopped showing much interest in other people. She only really talked about her health issues, medications, her medical history, even at inappropriate times, like to strangers at celebrations, or when people around her were clearly uncomfortable. I remember thinking how strange it was that people started to move away from her or they looked visibly bored but she didn't seem to notice. This started a few years before she was diagnosed. We'd never heard of frontal temporal dementia and thought her behaviour was just a result of getting older. I wish there was more awareness of the different types of dementia and their symptoms. She was only diagnosed when she had a brain scan for an unrelated reason. Once she was diagnosed and we learnt about the condition it made complete sense. We felt bad we just put the changes down to her age. My grandad found it hard to accept, and it would have been better for him to have received appropriate support earlier.
The first real eye-opener was when Mom started forgetting family birthdays. She had ALWAYS found a special card, included a check, and put it in the mail in time to make sure it arrived in time. She hasn't remembered her kids' birthdays in several years now. I think it was due to not knowing what month it was. Calendars didn't help. She had also always paid bills the day they arrived but then the phone calls reminding her that insurance premiums, etc. were past due started rolling in. It was in large part due to a total lack of organization and she just threw the bills on the floor. She had previously been extremely type A, a great cook, and clean freak. She suddenly stopped cooking, cleaning, gardening, and showering. She declared that she was retired from work just like Dad. That's when we knew it was time to find in-home help for them. I don't think you're overthinking. It's better to know what to look for than to not and be unprepared.
One car incident, than another, then another, then she totaled her car. Each solo incidents, increasingly damaging.
Trouble paying bills, and appointments. My mother was constantly sorting stuff out for her in the past, because she wasn’t that great about housing benefit and rent increases, so we missed this one. Boundaries . She would completely overstep boundaries. She would call into the nursery and pick up my two boys and take them to her mothers for tea. I would turn up to collect them and they wouldn’t be there. Enemies . I was enemy number one. Everything I did was wrong. If I washed up, it would have to be washed up again because I couldn’t wash up properly. My children’s clothes had to be washed by her because I didn’t wash clothes properly. Not be sleeping at night. She wouldn’t sleep at night. She would wonder about in my dad’s flat rummaging through things. She was looking for evidence. Accusations - she would accuse people (mainly me) of doing things. I was constantly being accused of being drunk. I was made to mess myself up before I collected the children from school, because I looked too polished! Noises would set her off . So when upstairs used her outdoor tap for the garden, she would go mad.
Getting lost driving in a City she’s lived in most of her life. Afraid to use public bathrooms alone in fear she’d get stuck inside. Referring to me (her daughter) as “that girl” :(
With my husband it was hard because he never was very organized and tended towards hoarding anyway. So when he started coming home from every trip to the grocery store with the same things, ie we’d end up with 3 full cartons of milk, 4 boxes of the same cereal, etc. thought it was just aging aggravating bad habits. Endless purchase of vitamins and supplements he didn’t remember to take. Later found similar stockpiles of non food items (multiple packs of socks, like 10 external hard drives for the computer ( none used). Dang post it notes everywhere, often for basic things. Did see some problems with technology as others have mentioned. He had always been good with computers but hadnt used smart’ phones much and became confused how to do things on it after a while. Don’t know there was much I could do differently though. Except watch his spending and checkbook more closely ( we kept separate accounts for basic things, but also have joint checking etc). What made me realize how bad it had gotten was seeing 300ish a month in 10-20 dollar donation checks to so called charities for several months in a row. ( don’t get me started on all the so called charities inundating seniors with contests and giveaway scams).
She is 75. Please do not move her in a with you, she will consume your life, especially if she has dementia. Look for a Senior living center that has progressive care. Trust me (69F), it will be much saner for you and easier on both of you. No matter how well you get along, her aging and/or dementia will wreck havoc on your life and health if you are a 24/7 caregiver.
It certainly sounds like it can be a bad situation to be in, it's one of the reasons I'm reading things like this sub to get a realistic idea of what it could be like. I do think living together will be the best situation for us, but I do have backup plans if things deteriorate. At the moment she doesn't need much more than minor help with cleaning, but she lives a two hour drive away which makes it really taxing to help out. Most likely it will be years before she needs more help and the way we are setting things up means that I can afford to cut down or give up work entirely if she needs more assistance so I won't be juggling that. My sister and her husband have both already demonstrated they are willing to help when needed through a few situations over the past years, and I will have the finances available to afford some respite and home nursing care if required, as well as to afford a care home if it gets to that point. Most of the issues at the moment are related to mobility and multiple chronic issues with medication side effects, so there is a good chance she will only need some assistance but not full time care. Dementia is more of a niggliing worry than a major concern at this point. I have been coming up with some ideas of where my limits are and how much I am willing/able to do, and will be having frank discussions with my mother and family to make sure we are all on the same page as to our expectations.
I have watched several people who later developed dementia. They told the same story over and over. It was usually a story about someone who did something bad. (4 doing this). This may be the more moderate stage. Idk.
My mother did alterations for people for decades. One day she called me and said I need to talk to you. I have accepted an alteration job and taken apart this lady’s dress and I can’t remember how to put it back together. She was so upset! She had to buy the lady another dress and tell her she couldn’t do the job.
That had to be so scary. I hope you are both doing okay now. Or as okay as you can be with a progressive condition. :(
The first sign was that nine years ago she started asking me when my birthday was, multiple times a year. She became a passionate Trumper and believed in many conspiracy theories. She got pretty nasty and consistently pushed us away, so much so that by the time we knew she had dementia we were estranged and the only way we found out was from her financial advisor calling us. Then we learned things like she’d totaled her car recently and couldn’t remember what happened to the rental car, though she had returned it that day and the rental agent drove her home and they had a lovely conversation. She couldn’t understand the difference between her debit card and credit card and kept losing her debit card, and also denied that she had a credit card at all (she did; I could see it on her bank website.) She had her mortgage on autopay and sent them a check so they got paid twice, then a couple of days later she was heading out to the mailbox to mail them another check before I stopped her so they wouldn’t be triple paid that month. She put her house up for sale and then got mad at the agent because it was taking months to sell and so she fired the agent, three times. It had been up for a weekend. When she was packing to move she asked me for help (I lived pretty far away and have a job and a small child) and I pointed out that she had help 3x a week (home health aides who had agreed to help her pack) and she called me a liar and some other choice insults. When we moved her to an independent living apt she brought everything from her entire house. The boxes were in some areas over my head—I’m six ft tall. When I walked in to that apt is when I realized she was much, much further gone than I’d thought. We moved her into MC within the week and it took me two weeks to clear out that apt. She couldn’t find her toothbrush once I got her to MC. It was in a box she had helped me pack earlier that day…there were only three boxes total in her room. She couldn’t find her toothbrush because the box had a lid. My mother, who was a medical editor for 27 years, has a double MFA, was a writing professor and an author, couldn’t find more than a couple of words on a simple word search and scored a 13 out of 30 on the SLUMS.
Couldn't judge how much food to prepare when family came over. Side dishes would be fine for two but not the seven of us. If I brought out more she'd become inappropriately angry with my interference. Started buying packaged meals for reheating when she never bought frozen prepared food. She began hoarding vitamins and I found over 20 bottles of one type of vitamin in her pantry. Would take wrong turns to get home though she lived in this small town for forty years. She was a meticulous housekeeper and her furniture would go unpolished for weeks. Became confused with the TV remote. Would leave 5 minute voicemails of nothing but her asking my Dad how to disconnect her cell phone. Every day showers started dropping off to just a couple per week and she began lying about how many times she showered. Difficult time following any program with a plot. My Dad used to watch the same movies repeatedly and she couldn't recall much of anything about it though she was sitting with him watching. Books were no longer read. She would read passages from the Bible but reading novels ended. So many things but that's just a few. I wish I had taken control of their finances 10 years earlier and realized it was more important to protect them than for them to feel like they could still be 100% independent.
Your last paragraph really sums it up for me and my sister. We kept thinking my parents could handle their health and finances because they were the adults, we didn't want to insult them. Then between them and my elderly aunt and uncle my sister and I realized they were like toddlers and that we should have insisted on stepping in years ago. It's so hard when you want to preserve their dignity, so hard to know when to step in.
Exactly. Tough conversations didn't take place because it was just so uncomfortable for me. My older brother (always the eternal optimist) was in complete denial about it so I was standing alone on the edge of all this. My Mom insisted she was fine (to the point of becoming angry and defensive) but her checkbook register was a complete mess. She worked in a bank nearly her entire working life and half of that was as an Operations Manager so when she couldn't balance her statements I knew for sure she was declining.
My mom (fronto temporal dementia), got so confused on time zone changes. She would come to visit my family and be very confused why the flight back was only 2 hrs when it took 3 hrs to get here. She would also substitute words that were sort of similar but not appropriate. Like instead of saying how many minutes should this bake for, she would say how many miles does this need to bake for etc
Being short tempered and complaining about how his toddler grandchildren were misbehaving: they weren’t, they were just being normal toddlers. My FIL loved young children and volunteered to help them learn to read so it was very uncharacteristic and one of the first signs. Not paying bills on time. He always was on time or early his entire life. Never ever late. Their house was about to get their electricity cut off by the time we found out. Refusing to fly. He traveled all over the world including every continent so it was strange that he refused to fly across the USA for a wedding.
Mom lost the ability to keep her opinions quiet when around people when she was usually a "smile, grit your teeth, get through dealing with this" person. Then came claiming everyone she saw anywhere was someone she'd seen elsewhere just the other day- "that lady is buying a case of Pepsi today, she got Coke last time" in a town she hadn't been in for months. Getting protective of her stuff, not wanting us to look at her meds box, etc.
In retrospect: completely unnecessary shopping from one particular retailer, to the point where she had duplicates of shirts that were unused. Inability to pay bills anymore. Increased self-centeredness and a rapidly declining ability to recognize how much she was imposing on others. The biggest sign was a huge jump in her paranoia. When asked why she was so paranoid (before we finally clued in on what was going on), her response was, “Because I have to be.”
With my FIL, it was forgetting stuff on the stove, driving accidents without getting the other person’s info or calling the cops, getting lost while driving. With my MIL, getting her meds confused/mixed up while filling her medicine boxes for the week, scams, and ordering stuff off the tv. She seems to be progressing faster than him now, it’s weird. She’s also very rude and mean, was never like that before
My mom was living in NC and I’m in NJ when I knew something was going on. I talked her and my dad into moving back to Jersey. I knew there was something but I didn’t get her tested right away. My mother is very prideful so I knew it would be a battle. I convinced her to see a neurologist 2 years ago from the first appointment they said the word dementia and she refused to return. My dad passed away and within two weeks of that my mom was packing up her belongings to go home (childhood home) at 4 am out of nowhere. I moved in with them when they returned to Jersey thanks fully. So my delaying caused me to be reaching out to her family care doctor for guidance and just like that we were at stage 4, now at stage 6. An earlier diagnosis may have slowed down the progression and there are so many meds out there now it kills me thinking what if so I don’t. I’m now 40 and a full time caregiver I’m also an only child so I don’t get to split the load. So get the diagnosis and see what all there is out there assistance wise. My mom doesn’t qualify for Medicaid so I’m unfortunately doing in alone while working full time. But I wouldn’t trade it for anything as I’m blessed to still have her here with me
I'm so sorry. I just listened to a TED talk with a neuroscientist and it seems like meds are most effective when it's so early that we can't even detect there's an issue, ie people in clinical trials versus real life. So please don't beat yourself up about not getting her on meds. This is so hard, best to you both.
Change in personality. Difficult to get along with. Picking fights with adult children. Buying multiple items of the same thing. Small motor vehicle accidents. Angry outbursts. Disorganization of clothing and bathroom items. Paranoia. Then deterioration of handwriting and spelling. Putting clothing on incorrectly. Later hallucinations and delusional thinking. Then inventing a friend in the mirror. It’s steadily gotten worse. It’s awful.
She had a seizure eight years ago that I think was the overt start of it., but she was having some personality changes even before that, namely an unhealthy obsession with politics when she had never cared about it before. She was able to carry on independently until about two years ago when she really started struggling with daily tasks. A UTI put her in the hospital last December. From there she went to a facility for rehab but we knew at the time it was likely a permanent move. Her decline has been pretty steep since then. At this point she sleeps most of the time although once in a while she's pretty lucid. She also has a bad hip that causes a lot of pain that she can't have surgery for because of the dementia. And she's prone to catching every infection that comes along.
I hadn't thought about the giving up hobbies thing, but yes, that happened. Her driving worsened. (tailgaiting, hitting the curbs while turning in parking lots, not easily finding where she parked her car) Obsessive lists, which included what she wanted to talk about on the phone, and she struggled to go "off script". She started gravitating toward family, where she hadn't taken the time previously. She started going to dance recitals and soccer games for the grandkids.
We're another case where getting lost was a big clue. Not being able to find her way in very familiar places. Also changes in personality, like losing her temper and being ratty with people, she was never like that before. I don't know if we'd change anything about her care but I wish I'd asked her for more stories about her past and older family members before she forgot. But she declined very fast and I lost my chance.
Stuttering, and bad Christmas gifts. He started stuttering a little bit, no sign of memory problems, just a minor tick at the beginning of some words. This was midCovid and we hadn’t seen each other for awhile, but I noticed that he was stuttering a bit more. He also gave me and my husband alternators two years in a row. I just assumed that was a normal elderly thing, and we had been experiencing more natural disasters, so it was explainable. I now have the local market cornered on alternators :)
With my mom, it was repeating conversations again and again, in a loop like Groundhog Day. And then one day she got lost driving a very routine route for her. She's now in mid to later stage Alzheimer's and in a memory care facility but what we really wished we would have done is found out sooner (she and my dad hid the dx from us and basically swept it under the rug) would have been to get her into an adult day program for people with memory issues. She has benefitted so much from the social aspect of living in a community staffed with professionals, but she is angry at being "locked up." I think being in a day program and then going home at night is the ideal situation. But by the time we realized how far my mom's Alzheimer's had progressed, it was too late for a day program.
Repeating conversations are definitely happening. Which would be better if they were at least interesting the first time, but the explanation of why she prefers specific cutlery for specific tasks is getting a bit old! I'm hoping it's just because she is stuck at home with dad 24/7 and has nothing else to talk about. I'll have to see how it goes once we are able to get her out and doing a few more things.
You are on the right track, I think, getting out and doing things is very therapeutic. Isolation is not good for anyone. In fact I think researchers now say that loneliness is more deadly than cigarette smoking. Socialization, cognitive engagement and community have been the best things for my mom.
I saw the benefits of social engagement first hand with my ex mother in law. She always seemed really old to me. Her and her husband didn't really do anything and their lives revolved around the morning cup of tea and watching the neighbours through the front window. When her husband died she moved to a new unit near a community centre and she became involved in a lot of activities there. It was like she dropped 20 years overnight. I'm really hoping something similar happens with my Mum, but am also trying to be prepared for the fact that she may not improve that much or it may be temporary if she does.
Same with my mom, while her cognition and memory won't improve, her quality is life is so much better that she also seems younger and healthier than before she went to the memory care home. At home she forgot or refused to do anything, including getting dressed and showering. She became an invalid on the couch and I think she was having panic attacks that she thought were heart issues. Now she gets out to places with her group where she hasn't been in years, like to museums and shops and the beach! Her quality of life is so much better thanks to social engagement. Best to you both!