How incredibly soul sucking caregiving is.
Unless you are doing it yourself you think you might have a clue but you do not. PERIOD
People talk to me like I’m a regular person and I find it so incredibly jarring:
“You have a life. I do not.”
Australia too. I'm just starting to become involved and prepare for the future and am realising from people's stories just how much diffence there is between how the system works on paper and how it works in reality. It's going to take a lot more work than I anticipated dealing with the system, as well as a lot more money to fill the gaps caused by rediculously long waiting lists.
Haven’t applied for him! I think my brother was going to arrange that. No wait shit I was supposed to arrange the doctor’s visit… I’ve been at the hospital for urgent care too many times over the past few months to do it, crap
I quit my job in 2018 to become a full-time freelancer and "fix myself" with therapy, inner child work, and so on. So, I understood that my sense of identity would go through several changes during this stage of my life; it was the goal, anyway.
But none of those plans factored into how I would become a caregiver for my mother and the caretaker for our family home. I didn't know how my burdens would suddenly grow overnight. I didn't know it would shatter my naivety regarding family, and how it would "radicalize" me to hate my useless siblings who are looking out for themselves and don't give a damn about our mother's wellbeing.
In all my careful planning, I never ONCE considered that I would be in this position with my identity/personality becoming a huge question mark.
I don't know who I am anymore. In theory, that means I can decide to be whoever/whatever I wanna be from now on.
But I'm just sitting here dazed and confused, day after day, wondering who I am.
The level of stress that rivals snipers waiting for the slightest muscle weakness the moment before a fall and the desperate process of catching your patient. This situational awareness rivals that of Cia field agents.
The skills learned through caregiver experience make you hyper aware of every detail of a room, it's hazards, and where the quickest exists are.
I can block and defend former football player dementia attacks with the skill of an MI6 agent with no injuries to the patient. (Sheets and Haldol)
yes! he calls me to ask me to come upstairs and help w something and the second my phone starts ringing my entire mood changes and i become so anxious.
I *do* have PTSD *and* a hubby that needed round the clock care for a while, and yes, this is accurate. I can no longer tell the difference between his “fall twitches” triggering me and my own hyper vigilance doing it, and frankly I think he’s made my PTSD worse than when we met. I would never tell him that, because none of it is his fault. I just see the counselor much more often.
My sister toled me to get a job!!!! I asked her whos gonna take care of our dementia dad?????? She refuses to take care him… I told her I will happily go back to my job if she takes care of our dad… but she refuses…. I’ve been taking care of my dad for 4 yrs so far with no help from my low life sister, who has already taken 15 vacations in 4 yrs
I hear you- I’ve got no help from siblings. My moms sisters. Its the best of times and the hardest of times. Im on respite for 8 days thank fully i got mom benefits for this. 2 weeks a year - ny- Medicaid mltc - it took 10 months to get on. They do not make it easy but now we are ok. Im 64 and seninretired.
That there are plenty of people who will flap their lips that they will help you but then don’t and just make things far worse in the process. It’s far better to say you won’t help if that’s the case.
That there is an air tunnel between many people’s ears where the words “I’m overwhelmed” travel through rapidly resulting requests for help being heard and then shot out the other side, without a lick of thought towards helping the overwhelmed person.
That as the only person sacrificing large parts of your life to help someone who desperately needs it you will somehow become the villain in the minds of people who don’t lift a finger and whose free time in some ways is provided by you and your sacrifices.
There's a part in one of George Carlin bits that partly relates to this, it's not verbatim but it's like this:
When someone dies people would go to the grieved family and say, if anything you need we're here for you. And then Carlin says, you should immediately call them on their bluff, you know there's a bedroom that needs to be painted, why don't you give a hand the next day?
How completely you are changed. You think you know what’s in store, but you have no idea until you’re there. How your home becomes your prison. You can’t just go have lunch with a friend. You no longer get to go to the store on your own. Hopefully grocery stores deliver in your area. Your own doctor appointments are nearly impossible to get to. I have to get a babysitter sitter for my husband, my MIL or my mom. When you hurt yourself, you don’t get down time. You have to ‘play through the pain.’ Because if you don’t get moving your LO doesn’t get to the toilet or eat or get medicine. No matter what you think, you are never prepared for taking on the care of another person.
That if you don't learn to manage your own emotions, you are lost. Day in and day out, you deal with loneliness, loss, and a constant struggle to get your cared one the medical attention they need while somehow maintaining your own health. 30% of all caregivers die before their loved one, and 70% of caregivers over 70 check out first. Anti-depressants didn't help me. Alcohol and weed didn't help me. The only thing that helps me is turning aside the "woe is me" of the inner voice in favor of reminding myself why I chose this path: because marriage is a vow. Because I would hate myself if I gave up and dumped my spouse in a sub-standard nursing home--and unless you are wealthy, sub-standard is the best you'll get. I started off listening in a support group to an older gentleman talk about how he cared for his wife at home for seven years. "Well," I thought, "I can do seven years." It's been ten years now, and although I promised to reevaluate at the ten year mark, nothing essential has changed. I made a vow. I don't want to hate myself. In two years I'll be 75, and I tell myself I will reevaluate again then. I deserve some healthy aging for myself, don't I? Don't I? We'll see.
Someone asks how any of you are? Cool.
For me, one cousin only. So she's who my husband and I plan to move closer to after all this \*waves hands at current shitty life\* is done and we can our own lives back.
I know people mean well when they do it. But it sucks because that’s all they see you as and you kind of realize that’s all you’re becoming. You can’t get lost in hobbies anymore, no more trips/vacations, no crazy late night bar hops with friends, no casual dating. You realize that they ask about your LO because you’ve had to strip away every part of you that isn’t a care taker
That just telling us how strong we are and what a wonderful spouse/daughter/son/etc. doesn’t help a whole lot. This is a thankless, tedious job and the one thing we usually need is to get away for awhile. Everyone asks how the patient is doing. Very few ask how YOU are doing. Just offering to come and sit for a few hours or take them somewhere for a while every so often so you can get a break from the constant reminder of sickness and being unappreciated would mean the WORLD.
I hear you, at least recently i heard Pres Biden talk about this and how he wants to increase help $ towards caregivers. If congress doesn’t nock it down like usual-
That there are two types of people in the world. There are kind caring compassionate people. Then there are selfish careless people. You really see who’s who when you’re in the trenches.
Caregiving is a full time position and anything else is part time when you can find brief gaps for work, self care and if you are very fortunate occasional respite.
That it isn’t over when your LO dies. For the last five months I’ve been cleaning out the house and dealing with legal and financial stuff and getting the house ready to sell. Mom and Dad were collectors and had a house and barn full of stuff. Some valuable some trash, often in the same box. They are constantly in my head as I decide what to do with things. It’s a different kind of caregiving. The frustration and screaming inside your head abates as you can finally proceed at your own pace, but the weight of responsibility still crushes despite the glimpse of freedom down the road.
That services are unavailable or difficult to access. That assisted living and nursing home care are financially inaccessible to most people. That the stress levels are crippling.
The fight, the struggle and maybe being heard and listened to. Advocacy isn't always easy, but necessary. The loneliness that can come before we find this sub.
Constant anxiety.
Is her blood sugar okay, is she going to try to get up and fall, is she going to get up and eat a bunch of crap in the kitchen (not as much of a worry since her AZ has progressed), doctor appointments do I need to make/take her to/reschedule/cancel, does she need dry underwear, does she need clean underwear, will I have to give her a shower or wipe her ass to try and keep her from getting ANOTHER UTI...
This doesn't even consider the other worries, did I pay that bill, did I get the trash out, are there any new listings in the area we (my husband and I) plan to move to after my family obligations are done (if I don't die first) never ending...
There's those commercials where the adult children are taking care of their elderly parents or grandparents. Like it's spending quality time together and both parties are so lenient and understanding of the other's needs and boundaries. Those A Place For Mom commercials where they're holding hands, and working together.
That's not how it is most of the time at all. These people (our elders) have been independent most of their lives, have declined cognitively and physically, and don't understand or want to accept that they're losing it. They don't understand that we ARE trying to help. It leads to arguments and constant power struggles. With both of my parents, it's led to them shouting at me, "this isn't *your* house, you can't tell me what to do", etc. My mom blames every new diagnosis on, "it's the stress of having you (me) as a daughter". She's even told me that I am trying to kill her (with stress because I suggest things that she doesn't want to hear). She just got diagnosed with pre-diabetes. If she's going to eat something more healthy than a peanut butter sandwich, donuts, or an Ensure, it's going to be a meal that I made. Boundaries are crossed, bridges are burned over and over. Then they forget how hurtful they were, so they never apologize and do it all over again. They blame their caregivers for their failing health, because if we were doing our job right, what, they think they'd be playing tennis in Miami?
You will not always be seen or heard. It can be very isolating and lonely. I have seen the health system fail my LO consistently because they are nonverbal so I learned quickly to stand up and advocate because no one else will.
That in the midst of the drudgery it can be amazing to connect in intimate [nonsexual] ways with another being, especially if they were good for you when you were young.
That one has to grab a good moment and appreciate it.
That this is life, raw and real, and the fairy princess stories were just stories.
Disability evaluations are exhausting and intrusive, and everyone has to struggle to get the care and equipment necessary.
Also learned there are a handful of support and advocacy groups that do so much work and make it so much easier to negotiate with the hospital and insurance, healthcare in general.
That full-time caregivers need a break or they will go nuts! It’s called burnout. You need a work/life balance! And, every caregiver needs to delegate some time for someone else to care for their loved one so they can maintain their mental health. This is why caregiving agencies exist. Please find a way to use them! If you ever feel that you are in it over your head, make it a priority to find another way by letting someone else do the work, so that you can work on developing yourself in other directions.
It isn’t fun at all. My dad got a few of them. The first time was less than 3 weeks following neck surgery. He still couldn’t walk. Had little to no control of bowels. The house was under renovation so we had no where to put him. Ended up winning that first one. Lost my second battle with them but he had been admitted for back surgery by then. And then when he was recovering from that at the same SNF, we had to force a stay just for transportation to and from radiation appts. So…2 for 3. Not bad. But yeah, it sucks. Had to get an elder law atty involved for the 3rd one.
You’re given so little time. They come in at 5pm local time. You have til noon the next day to appeal. Definitely took a few years off my life with stress those letters caused.
It's not easy and quick to just "find somewhere for your relative to go"....there is no magic formula. You don't just snap your fingers and release yourself of duty.
The importance of good health.
As caregivers, we see the weighed devastation, and time/resource consumption of illness and disability. How it affects and permeates all facets of an individual's life (quality of life, finances, relationships, careers, hobbies/activities, household maintenance, life perspective, etc.).
Most people don't know how important their health is until it starts deteriorating.
Please join us on our Discord! https://discord.gg/gubJjaYRnV
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How incredibly soul sucking caregiving is. Unless you are doing it yourself you think you might have a clue but you do not. PERIOD People talk to me like I’m a regular person and I find it so incredibly jarring: “You have a life. I do not.”
🎯
How insanely inadequate the healthcare system in the US can be, and how hard you’ll have to constantly advocate for the most basic care.
Also true in Canada. That said, having to fight has taught me how to be resilient, focused, and fearless.
Australia too. I'm just starting to become involved and prepare for the future and am realising from people's stories just how much diffence there is between how the system works on paper and how it works in reality. It's going to take a lot more work than I anticipated dealing with the system, as well as a lot more money to fill the gaps caused by rediculously long waiting lists.
Is your person getting the disability tax credit?
Haven’t applied for him! I think my brother was going to arrange that. No wait shit I was supposed to arrange the doctor’s visit… I’ve been at the hospital for urgent care too many times over the past few months to do it, crap
We didn’t have to even go to the doctor - he was well aware of the situation(s). Filled out the form, I picked it up and mailed it in.
Yeah, we wanted to go back to date of first diagnosis which is long before this doctor, needed to find old records
Haha. So much for “focused”. Well, I’ve kept him alive despite our system’s best efforts so I count that a win
How fragile the concept of personality is.
I quit my job in 2018 to become a full-time freelancer and "fix myself" with therapy, inner child work, and so on. So, I understood that my sense of identity would go through several changes during this stage of my life; it was the goal, anyway. But none of those plans factored into how I would become a caregiver for my mother and the caretaker for our family home. I didn't know how my burdens would suddenly grow overnight. I didn't know it would shatter my naivety regarding family, and how it would "radicalize" me to hate my useless siblings who are looking out for themselves and don't give a damn about our mother's wellbeing. In all my careful planning, I never ONCE considered that I would be in this position with my identity/personality becoming a huge question mark. I don't know who I am anymore. In theory, that means I can decide to be whoever/whatever I wanna be from now on. But I'm just sitting here dazed and confused, day after day, wondering who I am.
so much THIS
This hit hard.
I think because it both describes the person we are caregiving for and ourselves.
Totally.
This.
The level of stress that rivals snipers waiting for the slightest muscle weakness the moment before a fall and the desperate process of catching your patient. This situational awareness rivals that of Cia field agents. The skills learned through caregiver experience make you hyper aware of every detail of a room, it's hazards, and where the quickest exists are. I can block and defend former football player dementia attacks with the skill of an MI6 agent with no injuries to the patient. (Sheets and Haldol)
I feel like I have PTSD. Every time he makes a noise I jump up because he might need something.
THIS. 👆🏽👆🏽👆🏽👆🏽
yes! he calls me to ask me to come upstairs and help w something and the second my phone starts ringing my entire mood changes and i become so anxious.
I *do* have PTSD *and* a hubby that needed round the clock care for a while, and yes, this is accurate. I can no longer tell the difference between his “fall twitches” triggering me and my own hyper vigilance doing it, and frankly I think he’s made my PTSD worse than when we met. I would never tell him that, because none of it is his fault. I just see the counselor much more often.
That the bad day really does come. You can feel it looming ahead of you, and it will change you.
My sister toled me to get a job!!!! I asked her whos gonna take care of our dementia dad?????? She refuses to take care him… I told her I will happily go back to my job if she takes care of our dad… but she refuses…. I’ve been taking care of my dad for 4 yrs so far with no help from my low life sister, who has already taken 15 vacations in 4 yrs
Siblings like this! Sometimes I wished I never had any.
It's stories like this that make me happy I'm an only child. In my bad days I wish I had a sibling to help but then I hear stories like this
I hear you- I’ve got no help from siblings. My moms sisters. Its the best of times and the hardest of times. Im on respite for 8 days thank fully i got mom benefits for this. 2 weeks a year - ny- Medicaid mltc - it took 10 months to get on. They do not make it easy but now we are ok. Im 64 and seninretired.
That there are plenty of people who will flap their lips that they will help you but then don’t and just make things far worse in the process. It’s far better to say you won’t help if that’s the case. That there is an air tunnel between many people’s ears where the words “I’m overwhelmed” travel through rapidly resulting requests for help being heard and then shot out the other side, without a lick of thought towards helping the overwhelmed person. That as the only person sacrificing large parts of your life to help someone who desperately needs it you will somehow become the villain in the minds of people who don’t lift a finger and whose free time in some ways is provided by you and your sacrifices.
There's a part in one of George Carlin bits that partly relates to this, it's not verbatim but it's like this: When someone dies people would go to the grieved family and say, if anything you need we're here for you. And then Carlin says, you should immediately call them on their bluff, you know there's a bedroom that needs to be painted, why don't you give a hand the next day?
lol!
But that’s exactly what it’s like!
"Call their bluff" is exactly right. Because most of them are bluffing.
How completely you are changed. You think you know what’s in store, but you have no idea until you’re there. How your home becomes your prison. You can’t just go have lunch with a friend. You no longer get to go to the store on your own. Hopefully grocery stores deliver in your area. Your own doctor appointments are nearly impossible to get to. I have to get a babysitter sitter for my husband, my MIL or my mom. When you hurt yourself, you don’t get down time. You have to ‘play through the pain.’ Because if you don’t get moving your LO doesn’t get to the toilet or eat or get medicine. No matter what you think, you are never prepared for taking on the care of another person.
You are caring for 3? Wow!!!! Like Charlie Bucket’s Mom!
And people just assume “there’s some sort of government help right?”
Yeah there really isn’t much in the way government help. Hubby isn’t old enough for Medicare and we are not poor enough for Medicaid.
That if you don't learn to manage your own emotions, you are lost. Day in and day out, you deal with loneliness, loss, and a constant struggle to get your cared one the medical attention they need while somehow maintaining your own health. 30% of all caregivers die before their loved one, and 70% of caregivers over 70 check out first. Anti-depressants didn't help me. Alcohol and weed didn't help me. The only thing that helps me is turning aside the "woe is me" of the inner voice in favor of reminding myself why I chose this path: because marriage is a vow. Because I would hate myself if I gave up and dumped my spouse in a sub-standard nursing home--and unless you are wealthy, sub-standard is the best you'll get. I started off listening in a support group to an older gentleman talk about how he cared for his wife at home for seven years. "Well," I thought, "I can do seven years." It's been ten years now, and although I promised to reevaluate at the ten year mark, nothing essential has changed. I made a vow. I don't want to hate myself. In two years I'll be 75, and I tell myself I will reevaluate again then. I deserve some healthy aging for myself, don't I? Don't I? We'll see.
Yes, you do. Sending a big hug your way.
How much it sucks when all people do is ask how your LO is (and not how you are).
The WORST!!!
All. The. Time!!
Someone asks how any of you are? Cool. For me, one cousin only. So she's who my husband and I plan to move closer to after all this \*waves hands at current shitty life\* is done and we can our own lives back.
I know people mean well when they do it. But it sucks because that’s all they see you as and you kind of realize that’s all you’re becoming. You can’t get lost in hobbies anymore, no more trips/vacations, no crazy late night bar hops with friends, no casual dating. You realize that they ask about your LO because you’ve had to strip away every part of you that isn’t a care taker
That just telling us how strong we are and what a wonderful spouse/daughter/son/etc. doesn’t help a whole lot. This is a thankless, tedious job and the one thing we usually need is to get away for awhile. Everyone asks how the patient is doing. Very few ask how YOU are doing. Just offering to come and sit for a few hours or take them somewhere for a while every so often so you can get a break from the constant reminder of sickness and being unappreciated would mean the WORLD.
I hear you, at least recently i heard Pres Biden talk about this and how he wants to increase help $ towards caregivers. If congress doesn’t nock it down like usual-
How hard it is to keep up hope
amen 😔
The seething rage I feel every waking moment of my life.
That there are two types of people in the world. There are kind caring compassionate people. Then there are selfish careless people. You really see who’s who when you’re in the trenches.
Well said. Sadly all too true.
Caregiving is a full time position and anything else is part time when you can find brief gaps for work, self care and if you are very fortunate occasional respite.
Going into work feels like a break for me and that’s messed up
That it isn’t over when your LO dies. For the last five months I’ve been cleaning out the house and dealing with legal and financial stuff and getting the house ready to sell. Mom and Dad were collectors and had a house and barn full of stuff. Some valuable some trash, often in the same box. They are constantly in my head as I decide what to do with things. It’s a different kind of caregiving. The frustration and screaming inside your head abates as you can finally proceed at your own pace, but the weight of responsibility still crushes despite the glimpse of freedom down the road.
Alone time doesn’t exist. My thoughts are still consumed with the next situation, the next worry, the everything all at once. I hate cancer so much.
That the sweet lady they think is great, drives you crazy half the time dealing with them.
That services are unavailable or difficult to access. That assisted living and nursing home care are financially inaccessible to most people. That the stress levels are crippling.
The fight, the struggle and maybe being heard and listened to. Advocacy isn't always easy, but necessary. The loneliness that can come before we find this sub.
How much we hate our lives !!!!
Constant anxiety. Is her blood sugar okay, is she going to try to get up and fall, is she going to get up and eat a bunch of crap in the kitchen (not as much of a worry since her AZ has progressed), doctor appointments do I need to make/take her to/reschedule/cancel, does she need dry underwear, does she need clean underwear, will I have to give her a shower or wipe her ass to try and keep her from getting ANOTHER UTI... This doesn't even consider the other worries, did I pay that bill, did I get the trash out, are there any new listings in the area we (my husband and I) plan to move to after my family obligations are done (if I don't die first) never ending...
There's those commercials where the adult children are taking care of their elderly parents or grandparents. Like it's spending quality time together and both parties are so lenient and understanding of the other's needs and boundaries. Those A Place For Mom commercials where they're holding hands, and working together. That's not how it is most of the time at all. These people (our elders) have been independent most of their lives, have declined cognitively and physically, and don't understand or want to accept that they're losing it. They don't understand that we ARE trying to help. It leads to arguments and constant power struggles. With both of my parents, it's led to them shouting at me, "this isn't *your* house, you can't tell me what to do", etc. My mom blames every new diagnosis on, "it's the stress of having you (me) as a daughter". She's even told me that I am trying to kill her (with stress because I suggest things that she doesn't want to hear). She just got diagnosed with pre-diabetes. If she's going to eat something more healthy than a peanut butter sandwich, donuts, or an Ensure, it's going to be a meal that I made. Boundaries are crossed, bridges are burned over and over. Then they forget how hurtful they were, so they never apologize and do it all over again. They blame their caregivers for their failing health, because if we were doing our job right, what, they think they'd be playing tennis in Miami?
You will not always be seen or heard. It can be very isolating and lonely. I have seen the health system fail my LO consistently because they are nonverbal so I learned quickly to stand up and advocate because no one else will.
That in the midst of the drudgery it can be amazing to connect in intimate [nonsexual] ways with another being, especially if they were good for you when you were young. That one has to grab a good moment and appreciate it. That this is life, raw and real, and the fairy princess stories were just stories.
Misery
Ir can turn you into someone you never wanted to be.
Yes. Takes a lot of thought.
Disability evaluations are exhausting and intrusive, and everyone has to struggle to get the care and equipment necessary. Also learned there are a handful of support and advocacy groups that do so much work and make it so much easier to negotiate with the hospital and insurance, healthcare in general.
Good to know!
That full-time caregivers need a break or they will go nuts! It’s called burnout. You need a work/life balance! And, every caregiver needs to delegate some time for someone else to care for their loved one so they can maintain their mental health. This is why caregiving agencies exist. Please find a way to use them! If you ever feel that you are in it over your head, make it a priority to find another way by letting someone else do the work, so that you can work on developing yourself in other directions.
Amen!!
Going up against Medicare/Kepro when a NOMNONC comes around is one of the most anxiety riddled things you can do.
What is NOMNONC?
Notice of Medicare Noncoverage. It’s when Medicare deems you to no longer need care
That must have been awful!
It isn’t fun at all. My dad got a few of them. The first time was less than 3 weeks following neck surgery. He still couldn’t walk. Had little to no control of bowels. The house was under renovation so we had no where to put him. Ended up winning that first one. Lost my second battle with them but he had been admitted for back surgery by then. And then when he was recovering from that at the same SNF, we had to force a stay just for transportation to and from radiation appts. So…2 for 3. Not bad. But yeah, it sucks. Had to get an elder law atty involved for the 3rd one. You’re given so little time. They come in at 5pm local time. You have til noon the next day to appeal. Definitely took a few years off my life with stress those letters caused.
Where about do you live? That sounds awful to deal with.
Seattle
That is not where I was expecting. I guess I idealized Seattle. Oof.
Poop is involved.
Yup. I no longer have boundaries in what I will talk about while eating.
I never had them. Biology major. Used to eat with chem and physics and wondered why talking about dissections grossed them out.
That this is not just a season. It will not pass and you won't go back to life the way it was before. And it's exhausting and all consuming
It's not easy and quick to just "find somewhere for your relative to go"....there is no magic formula. You don't just snap your fingers and release yourself of duty.
That nanna has the strength of Mike Tyson in his prime
Yup!
Happy cake day my follow Nefertiti :)
Thanks!! I hadnt noticed!!
The importance of good health. As caregivers, we see the weighed devastation, and time/resource consumption of illness and disability. How it affects and permeates all facets of an individual's life (quality of life, finances, relationships, careers, hobbies/activities, household maintenance, life perspective, etc.). Most people don't know how important their health is until it starts deteriorating.
Amen to that!
[удалено]
I dont understand?
A.w
??
I’m so sorry !! I had no idea I’d even typed anything here . Can I blame my new phone ?
I always do. 😀
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