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My grandmother, age 77, has a history of mild Alzheimer's disease and just recently had a second stroke. After the second stroke she is, as of right now, completely bed bound. She can not sit up, stand, walk, roll, position etc her self. She is also incontinent and uses a diaper. She suffers from depression and I believe she has other mental health issues (manipulative, pretends to be a sweet, kind person around strangers and friends but is mean as a rattlesnake around family and always has been). Every time we try to do anything with her like cleaning, repositioning, changing the bed, etc. she screams that we are hurting her and that we should just put her in a nursing home which, honestly is where she needs to be. I, her grandson, work 50 hours a week, often not getting off of work until 1-2 AM, then have an hour long ride home and have to be up and over to her house to take care of her around 8AM for at least an hour to get her cleaned, changed and dressed. I do not want to, and, do not think her grandson should have to clean her and change her diaper. I never volunteered to do this or wanted to do this, it was just expected because they "can't afford" to hire someone to do it and allegedly her insurance won't cover having someone to come out to bathe and clean her. To be completely honest, I am very bitter because it has always been blatantly clear that my sister was my grandparents favorite as she got away with murder and got anything she ever wanted from them, yet I am the one who is having to take care of her, not my sister. How do I explain to the family that I do not want to do this anymore and that they need to find someone else to care for her, or, they need to arrange for her to go to a nursing home?

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Don't be available any longer, plain and simple. Tell them this isn't working out, it's affecting your health -- and here's the kicker to convince them -- HER health is suffering for it as well. None of you is qualified to care for a bedbound patient.

Withdraw from the hands-on stuff and start doing research on signing her up for Medicaid. She does need to be in skilled nursing, and Medicaid pays for that if she has no money. Neither you nor your family should be paying for anything.

Say that you will handle getting the information of Medicaid and that's it. You need your sleep to function at work, so you'll take care of that on your time. They'll have to find another way to get help in the mornings, and no, you absolutely should not be changing diapers for your grandmother.

Good luck and hold firm.
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FedRightOnUp Sep 2022
MJ1929, she does absolutely need to be in a nursing home, but, I don't think I should be the one to decide that. My grandfather keeps saying well if she can't do X then she will have to go to a nursing home. Then its if she can't do Y she will have to go to a nursing home. It started with if she can't walk she will have to go, then use a bedpan for a bowel movement she will have to go. The thing is she has never gone. They have money, my grandfather just doesn't believe it for some reason and with her insurance and everything it would be no problem placing her into a nursing home. Everyone seems to be stuck on the "Well I just can't stand the thought of seeing her in a nursing home!" I am the only one who can't stand to see her not getting the care she needs at home. My grandfather knows I don't want to take care of her in this way and has said several times he would try to find someone to come help with her in the mornings but he "can't afford to spend no whole lot" meaning he doesn't want to hire someone from an agency, he wants to be able to find a neighbor or family friend who is willing to work for peanuts, which is not likely to happen. I just know if and when I tell them I can't do it anymore its going to turn into a big to do and will forever be thrown in my face that because of me she had to go to a nursing home (mostly by my sister who had done absolutely nothing to help out at all, even once.) Thank You for your suggestions. I guess I know what I need to do, I just am dreading the fallout from it.
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I'm going to challenge you first.. stay with me..

"I never volunteered to do this"

OK. Explain.

Did you say No?
Did you not show up?

Or did you show up & do the job? Coz that would look like volunteering..

But, you CAN quit at any time. (Giving notice so not endangering others by neglect of course).

You need to give yourself permission first.
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FedRightOnUp Sep 2022
Beatty, I was told they needed me to help take care of her. I was not really given a choice. And, with my wonderful dysfunctional family had I refused or when I tell them I can no longer do this, it will always be thrown in my face that I put her in a nursing home because I am or was too selfish to help take care of her. I don't consider it volunteering when you are told "I need you to do..." I initially didn't refuse because it was presented that it would be a quick 15-20 minutes in the morning, no big deal. It is rapidly turning into a hour or longer in the morning and any time she needs to be changed throughout the day I am expected to show up and help.
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Fed, I think some good old-fashioned talking is the way for you.

In your best authoritive no nonsense unemotional way.

"will forever be thrown in my face that because of me she had to go to a nursing home".

Just CORRECT them;

'That is not correct.
Grandma had to go to a nursing home because she got OLD & her needs were higher than could be managed at home'.

"had I refused or when I tell them I can no longer do this, it will always be thrown in my face". So?
1. You are allowed to say no.
2. You are not responsible for others reactions to your no.
3. Others can pushback, get angry, behave badly, throw a tantrum as they choose.
4. Their behaviour is theirs.
5. You can still say no.

I know you felt pushed.. but ultimately you keep showing up. They pushed harder than you pushed your No is all. Because you wanted to help them & that was OK.

But if you need to quit, tell your Grandparents. Tell them it's time to make other arrangements. You gave them a gift of care - but the needs are getting too big now.

"I am expected to show up and help".

The way to change their expectations is by
1. Telling them what you will & won't do
2. Ensure you carry that out

If you say no, but then act yes nothing will change.

People will never take up new/different/strangers to care for them when a child or grandchild keeps turning up.
Would you?

My last advice is this:
Don't wait to be saved from this situation.
YOU must build the steps out.
You can do it!
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Your gma NEEDS NH level care.

Your "wonderful dysfunctional family" will forever pin that on you.
So?

So what?

You know that's not true, yes?

You are getting gma what she needs.
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My question is what is everyone else doing? Is everyone in the family taking on an hour a day to help out or is it just you and your grandfather?

Do you rely on your family for anything like housing? Is your family a part of your day-to-day life? I ask because if you lived on your own it would be very easy to tell them you are ill and cannot come over for the next week requiring them to move to plan B. Or that you had to take on extra hours at work so are unavailable for the foreseeable future.
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It is not your responsibility, if one of her children want to do it fine or they place her in a home.

Here is how I would explain it to them:

"I am young, I have a life, it is not my responsibility to care for my grandmother, if it is anyone's, it is one of her children's, I am giving my 2 weeks notice, that will give you time to find a replacement for me."
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Fedup, my mil tried the “I’m gonna need you” line with SO.

Dil, his brothers wife, couldn’t take their wheelchairs over stairs, so they’d make him do it and then accompany his parents.

He built a ramp.

Then brothers wife said she couldn’t transfer mil to the car. They wanted him to lift her in and out of moms car..

He had job interviews. I sent them a listing for the best concierge transport I could find. They ended up using it and liking it. The family did not hate him.

Tell them that your work schedule has changed so you can’t come.
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It is so painful when it becomes clear that your extended family sees you as a useful 'worker bee' but not as a whole person with a life to live. It seems you have a good understanding of your grandfather, and why he never quite manages to get another home caregiver involved. And the rest of the family won't step up as long as you are managing her needs so well. (You know what a burden it is, but others don't want to even think about that, makes them feel guilty.)
It may be a big 'to-do' when you give your 2 weeks notice. I'd suggest writing a letter and giving it to your grandfather, and talking with him, explaining why you will no longer be able to make daily care visits. Then give the same letter to your parents. In a letter, explain once your decision and why (clear sentences, not lots of justifications. When all heck breaks loose, just repeat the language you used in the letter - Gramma's needs are not being met, risk of injury to her, clearly in distress with position and diaper changes (trained CNAs can do it more easily and it often needs 2 people to get the task done smoothly and quickly), bed bound at home means no access to medical care other than calling 911 and going to the ER.
If you are not doing all the work I expect that somebody else will have to get going and find out exactly what the insurance does/doesnt cover, find private pay caregiver agencies, etc. The local council on aging or health department should have some resources for your grandfather.
One of the reasons that some families hold onto care at home way past the time it is reasonable is that there are 'family secrets' that are easier to hide in the home and may be exposed if there are strangers coming into the house or if she is in a nursing home. Every family has secrets, but the shame of the secret and the long habit of concealment is a family rule. The one who breaks that rule (you) will be unpopular for a while, but your grandmother will be better off receiving good care and opportunities for activities/socialization greater than just her husband and the TV.
Families say 'I can't bear to think of her in a nursing home" are partially expressing their own fear of aging/disability/loss of control. You don't have to address that, just know it can be part of their mindset. Even if they don't realize it.
Take good care of yourself. You have a whole life in front of you, you can visit her in the nursing home but her care needs are nursing home level of care.
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Have you tried to find humour in the situation to save your sanity?
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With that kind of problem how does she not qualify for some kind of care/help from the insurance she has. Medicare or medicaid should be able to help you. If you are being TOLD this then someone has not checked her availability.
Call whoever is in charge - POA - tell them you are not able to come and someone else needs to help Grandma today. Stick to your guns.
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Fed, I’m sorry your family is so dysfunctional. You don’t seem to mention your parents. . . Is this part of the dysfunction? Are they ill or not in the picture?

It is not going to be easy to emancipate yourself from this dysfunctional situation but I think you have to do so, and soon. You matter too!
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Be brave and strong. Also be proactive. Get some info that presents a care facility in a positive way and distribute brochures to everyone in your family. Set up a meeting with someone from that facility, even if you’re the only one who shows up. Then declare that she needs to go to a place that provides the care she needs. It’s doing a disservice to grandma when nonprofessionals take care of her. She deserves better. Sell this plan to them in your most forceful and charming way. If they don’t buy it, then you say that you can no longer be part of the care plan because all of you deserve better. Be nice but firm, and it’s okay to say that it’s just too much to handle emotionally. Which it is. Take care of yourself now, and good luck. PS. At least you recognize the dysfunctional aspect of your family, and that’s the first step toward breaking free of it.
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Where are your parents? I know, it started out "since you live closer to Gma and Gpa, can you check in on them." To now intimately caring for Gma. Your grandfather or one of the females in the family should be doing this. My DHs 75 and if he had to, I think he could do a cleanup job. I have a feeling that unless others are involved in Gma's care, she is not being taken care of properly by Gpa.

You as a male should not be doing this and should have said No from day one. To be honest, if proper care could not be set up for her, then she should have gone to a LTC from the Hospital/Rehab.

Tell Gpa and the others, you can no longer do this. Tell them that not getting enough sleep in effecting your job. Me personally, would be afraid you would fall asleep at the wheel driving an hour home after dark.

If your grandfather is not willing to find someone to properly care for HIS wife than she needs to go to LTC. He can have their assets split, Gma's split would go towards her care and when gone, Medicaid applied for. Gpa will stay in the home, allowed a car and will get partial or all of their monthly income to live on. He will need to see an elder lawyer for this.

I figure your grandparents children can't be out of their 50s. They are perfectly able to care for Gma or at least me involved in finding her care. I can see if she is a nasty woman not wanting to care for her but that is not your problem. You have to make it clear that she needs more care than you or ur Gpa can give. He refuses to bring in help that he can afford. You can't afford to lose your job. And you will because you don't get enough sleep. I figure maybe 5 hrs. Taking catnaps doesn't work. Maybe what you could do is move closer to work if caring for Gma is the only reason ur staying. Explain the hour there and back and not getting enough sleep is taking its toll. You no longer can be their option, they need to find other ones.
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If you're working 50 hours a week at your job, how are you taking care of grandma? The woman needs full time care which you are obviously not able to provide for her, so someone else is doing the majority of that care. Who is that person?

In any event, it sounds like you need to move out of the house and let the family know you intend to do so in short order. In that case, you're no longer available to care for grandma, and that's the end of that. To me, that's the easiest way out of doing a job you don't want to be doing, that's making you feel bitter and resentful. The family will then find a way to either hire in home caregivers or place grandma in a SNF using Medicaid funds which they'll apply for on her behalf.

Nobody benefits from a bitter grandson who's begrudgingly stuck caring for a grandmother after working a long day. You should never have been roped into this duty in the first place. If you won't move out of this house and get out of caregiving that way, then give the family your 2 week notice to quit, but be prepared for the awkward situation that will ensue in the house as a result. Nobody will be happy that you quit your 'job' with grandma, and the tension may be thick as pea soup as a result. Me? I'd move out.

Good luck!
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PeggySue2020 Sep 2022
Op says he has to commute to grandmas house daily. It is unlikely that he lives there.
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Contact your local area on aging aka (her counties name) county counsel on aging. They will send you all the resources available to her in her area. This will be the best 1st move. They can help get services in place, get granny moved to a LTC facility, meals on wheels delivered, in home aides, etc., etc.

You will have to be the leader to get her the level of care she needs. It may seem like too much but, it will get her the care she needs and get you off the hook and back to being her grandson.

This is how you tell them you can not continue on the current path. Give them solutions and resources.

I think most of us don't know what is available to help us in these situations. It is really mind blowing what I didn't know when my dad suddenly needed help, the local counsel on aging guided me to resources and provided contact information for all of those resources.
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JoAnn29 Sep 2022
Why should he do it. The husband should be able to set it up or one of his kids. Not a grandchilds responsibility.
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Is grandpa able to do any of this care? Is he competent? If he is, give him your letter of resignation. A 2 week notice is reasonable. Tell your parents too by giving them a copy of this letter. If they're going to hold this against you and be jerks about it - well, screw them. You'd be better off in a life without them and their manipulation than you are in the life they've foisted upon you.
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My response doesn't offer a solution, other than you shouldn't be doing this and need to tell them. Too many people forget that 'No.' is a complete sentence.

Your situation, and mine, having my mom who is also manipulative, stay with me, is why I have very recently told my adult children that I don't want them changing my diapers. My mom isn't to that point, but when she is, I will realize my inability. At that point, a person requires nursing care, or constant care by someone who can provide it. That is NOT you. Have you been a nurse aide? Having my child or grandchild, ESPECIALLY one of the the opposite sex, change and attempt to properly clean the perineal area is so unappealing a thought that I would rather be in a nursing home, EXACTLY as your grandparent has expressed an interest in. I worked VERY briefly in a nursing home, I did bathe residents as well as change their disposable underwear. (slightly graphic content follows) It takes special care to clean the folds of a woman's perineal area, I doubt very much if your grand is getting this care, especially since there are 'professionals' who don't do it. I remember one woman who had so much old powder packed into hers that I got my RN instructor. The RN told me that's a sign of neglect. In a home situation, I'd call it a sign of lack of knowledge.

You aren't trained to take care of an elderly person, let alone one with mental issues. You could actually cause unintentional harm. For her health and well being, you should walk away, and I say a 3 day notice should suffice.
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Cover999 Sep 2022
The "lips" would need to be attended to when cleaning the area.

There that's not so bad :}
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It’s clear that you value your family, even though they are unfair and dysfunctional. So you need an excuse. Here’s a few:
- Your job hours have changed, you now start at 8am. Sorry, I can’t do this.
- You have got the sack, have had to get a different job, the travel is longer. Sorry, I can’t do this.
- You are taking a month's holiday in Alaska. Let's talk about it when I get back.
- I’m moving interstate for a year. Sorry…
- I’m ill, heart problems, the doctor has said no lifting, bending etc. So sorry ….
- She screams that I am hurting her, I’ve seen a lawyer who said that I am at risk for being reported for abuse. Sorry, not safe for her or for me.

And remember, there’s always NO. YOU organise the nursing home and throw her in it!
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In addition to what I wrote before, think about this: you are cleaning your grandma’s most intimate areas. She is mentally unsound, screams that you’re hurting her, and, as you have mentioned, she
is mean. What if she yells rape? In her mental condition she might actually believe she IS being raped. My mother was afraid of her toothbrush because she no longer knew what it was. What if you’re cleaning grandma and she doesn’t understand you’re helping her? There is no way to predict what someone with dementia might do. Sorry to raise this unpleasant topic, but you need to get out of there NOW. I’m concerned about you.
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