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My mother has owned and lived in her home for 70 years. My father died at a young age, leaving her with four young children. She worked hard to raise us and maintain the home. My youngest sister, (57yr), was born with an intellectual disability. She functions at a high level, worked 25 years, drives, but, has never lived outside the family home. Three years ago, my mother was hospitalized with a septic infection that left her severely deconditioned. After 8 mos of rehab, she was able to return home with CNA's 6hrs a day for personal care, light housekeeping, and meal prep. My sister is the care giver the rest of the day. This worked well for a while. However, my mother has many health issues, CHD, severe arthritis, macular degeneration. My sister is morbidly obese, arthritic, diabetic, and has an undiagnosed digestive problem. My mother has been unable to stand alone, consequently she needs help during the night to use a commode. So, my sister will sometimes be called every two hours during the night! The situation has them both stressed and depressed. However, my mother cannot see that my sister needs help as much as she does! Currently, my mother is in rehab again, after a gall bladder attack left her dehydrated and deconditioned. The facility she is in is the same as before, she knows and likes the people there. However, all she wants is to go back home. My sister wants to move to an assisted living facility herself. However, my mother told her that if she moved, and my mother had to stay at the nursing home she would die! I have been supportive of the community waiver, (I am POA), but, at this point, I truly feel that the situation is untenable. I don't know how to get my mother to see this, or, at least see the terrible position she has forced my poor sister into! Any insights/ or suggestions?
I am so grateful for this sight!

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If your mother has not seen the severity of the situation by now and she is 92, then she will never see it. I am not meaning to be offensive by this, but it is just shelfish for parents who do this to healthy children nonetheless unhealthy ones. My mother was legally blind (could not drive), had a ruptured disc in her back, struggled with severe anemia and eventually developed renal failure. My grandmother was insistant mom be her caregiver -- and later I helped. She too was too good to go to a nursing home because all these horrible things would happen.
Now, my mom was not an only child and her 100% perfectly healthy brother lived 1 mile away for a majority of the time the situation went on. My dad worked 3rd shift and because my mom did not drive, dad would come in from a night of maual labor, clean up and sit for sometimes hours in a doctors office with my grandmother and mom. My uncle worked first shift but his wife was a stay at home mom with very little responsibilities and she drove.
When my mom went into severe renal faillure, my grandfather (who chose to be hold and disabled to escape responsibility but wasn't to old to walk to town everyday to shoot the bull with his buddies) told me it was now my responsibility at age 14 to take over.
This is not love. This is not love. This is not love. This is abuse. Everyone feels sorry for the elderly, feels sorry for children but rarely is a thought given to the caregiver who is disabled themselves. I honestly wish there was a law where doctors reported this kind of abuse on adult children in the role of caregiver.
Have your mom grow up before she dies. Give your blessed sister some happiness. Set her free.
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While it's possible your mom is being selfish here, it's also possible she's speaking from fear. If your mom admits your sister can't take care of her, your mom might also have to face the possibility that your sister can't take care of herself. Could that be a factor? Even though your sister has obviously done very well, especially since she can see the need for assisted living for herself, your mom still probably feels responsible for your sister's well-being. She's the child your mom never had to let go of.

That 'if I have to stay at the nursing home I'll die' comment is very common, especially for someone of that generation. Many nursing homes used to be very horrible places and were only a place that the forgotten and unloved went. That's another fear your mom may have.

It's possible that if you will discuss the change in living arrangements with her, let it 'sit' in her head for a while, then discuss it again, she might be more accepting. That had helped my mom several times with changes she didn't want to make but could slowly accept.

Good luck.
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I was pretty confused by 'joycews' statements. First statement was that if the 92 year-old-mother hasn't grown up by now that she never would. Then her last statement was 'Have your mom grow up before she dies.'!!! Well, you can't make anyone grow up and it sounds like your mom worked her entire healthy life to support her family and to keep her family home all these years. That's very commendable and as a long time divorced and working mom that took care of my children, grandchildren and myself, I know how hard it is to give up control of your own life. I really like 'Tennie's' comments. She pointed out many factors and fears that happen in this stage of life for the elderly when they become incapacitated. Being a long time Registered Nurse and a Nursing Home Administrator, my strongest suggestion would be to get your sister placed as soon as possible in an Assisted Living. That will remove the option for mom to return home as her daughter as the care giver. Mom will soon find out that it's very expensive and almost impossible to have 24 hour care for her at home that is competent and reliable. Reliable being the key factor. There are agency's that are free, like 'A Place For Mom' that can give you endless information on the services available out in your community from Adult Family Living homes, to Skilled Nursing homes, legal contacts, in home agency's, etc. You may also be able to find a place that has the level of care that your mom needs as well as an Assisted living on the same property or owned by the same company that your mom and sister would be able to visit each other regularly but in no manner would your sister be responsible for your moms care. These are popping up in almost every city and work great for couples and families that are in this situation. The hardest decision in all this is that now is the time to tell mom that she can't return home. The easiest transition is always from one facility like a hospital or rehab to the other facility or long term care. It's tough, but you have to do what's right for your mom and your sister and don't forget yourself. You have to be strong, but loving, and you might end up being the bad guy in all this but end-of-life care is hard for everyone to accept. Hang in there and get some help in making all the transitions that need to take place.
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Kathy -- No offense intended, but clearly the reason your mother is such a tyrant at this stage in life is that the rest of you have allowed that sort of behavior.

Is your sister waiting for her mother's permission to take care of her own pressing need to move to assisted living? Will hell freeze over first? Can't you see that your mother has basically enslaved your sister, exploiting her disabilities? At the risk of sounding harsh, how can you be a party to this abuse?

The answer to why this situation exists may be that your mother -- as is typical of abusers -- has conditioned all of you over many years to bow to her demands. You also are her victim and perhaps are so used to it that you can't see clearly. Maybe you could benefit from counseling to help break this cycle.

Blessings to all of you for a rational resolution to this situation, whether your mother likes it or not.
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Right now both your mother and sister would legally be identified as "persons at risk" . Sadly, vulnerable people are often easily exploited by others. People who are a danger to themselves need to be protected .
I would call for professional help asap.....There is an "adult protective services" organization of some kind in your community . Also independent "elder care advisors" are available too.....Any nursing home office can direct you to this kind of help....If you call in professional help to remedy this situation, potentially you will not end up being the "bad guy"... Don't let your mother put your sister and herself in a dangerous situation for both of them.
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This is a horrible situation for anyone to be faced with giving up their home and independence but your sister is the one in most danger and the sooner she moves into assisted living the better. She really needs it. Your mother is in a sake place right now and like it or not needs the expert care she is receiving. She likes the people and surroundings. Giving up her home will be hard but she will not have to face moving out. have her list a few things she wants in the N/H and let her choose what she wants to give to family and friends. your sister will need some basic necessities for her assisted living apartment. If possible do not let her go to the house as it will be a big struggle to get her back to the N/H
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Is the rehab facility Mom is in also a nursing home? Can she transition from rehab to a full-time resident? Since she already knows and likes the place that may be easiest for her. There should be absolutely no question about her going home to rely on her disabled daughter.

Somebody should be helping your sister get situated in a suitable facility.

Responsible parents of disabled children try to set them up for independent living, a group home, or make some other arrangement for them long before their own death. Whether your mother failed to do this out of denial, fear, selfishness, or ignorance is interesting to speculate about, but it doesn't change the fact that it is no longer appropriate (if it ever was) to expect Sister's role to be that of caregiver. Sister needs someone to assist her into a suitable living arrangement. If that can be you, awesome! If you or another family member can't/won't do it, please turn it over to professionals.

Mother needs more care than a 6-hour CNA. Can she afford to pay for more care in her home? Most of us would like to remain in our homes until we die. Sometimes that is not possible/practical. Your mother is right that she will die if she goes to a nursing home. But the fact is, she will die when the time comes no matter where she is. If the care Mom needs can be arranged for at home, great. If not other arrangements need to be made, whether Mom can be brought to understand the limits, needs, and rights of her youngest daughter or not.

It is grossly unfair of your mother to put the burden of guilt on any of you. Her deteriorating health and increasing needs is not the fault of any of you. Again, this is true no matter what is motivating Mother.

Whether Mother can be helped to accept the truth or not, her family needs to rally around to ensure that her needs are met and that her disabled daughter's needs are met.
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You said that you have the POA. I do too for both my parents. I believe the hardest lesson I have gone through is that I am now in the adult role and they are in the child role. They are not able, as your Mom is not able, to be 'in charge' anymore. There comes a time when you must communicate as with a child. I would say, tell Mom what her choices ARE (that are acceptable to you, as the POA, and that will keep your sister and your Mom safe) and then let her be involved as to which one she wants to choose. Perhaps, as one said, there is a residence connected with the rehab she is in, and she can just transition right there? Perhaps a facility, as another said, where both she and your sister can be placed in different wings so they can still see each other daily? Perhaps another place? If she can go 'visit' and see how different nursing homes are these days, it may be easier to accept. My elder care attorney and case manager for my folks have repeatedly told me that ALL their clients fight the issue of having to give up control in one way or another. It is a hurdle to get over. Like caring for a 6 yr old who wants something they cannot have, the fastest way to get past it is to just tell them, this is how it has to be to keep you safe. Here are the options. No it's not pleasant and it's sad to have to deal with it, but....as my dad's caregiver used to be fond of saying to him and my mom....' it is what is it....and we have to make a choice now...' It is NOT easy....was not for me, and will not be for you. I had to 'stay away'....'walk away'....refuse to listen to complaints and whines....but it comes down to what is safe for everyone. Another thought...with my Dad, it always helps to say: "Your doctor says this is the best way for now" This age group thinks the doctors know best and if the doctor orders it or recommends it, they are more likely to accept it, than if it's just their 'kid' who says so!
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I have no problem with what kathy said. Her mom is the way she is and will not change. Most elderly people will not EVER change. I too am very sick of all the caregivers complaining about their situations and I have only been on this site for 5 days. I don't mean that I am not empathetic or I don't feel their pain, I just deal w/my mom differently. I AM ALSO A DISABLED caregiver w/many back problems and worse, I have Panic Stress Disorder Syndrome. My mom is constantly stressing me out and or trying to put me down. I do not complain. This is mine and my moms house, however I refer to it as mine because I AM IN CHARGE and I am the BOSS! You teach people how to treat you. If you let somebody walk all over you elder or not, that is showing them that you allow that kind of treatment. I will ignore my mom or go for a walk or even when it gets really bad, I will threaten her w/assisted living. Just because our parents are old and losing it in so many ways, I feel sorry for them,. but NOT to the point where I will allow my self to be hurt or abused. She is totally taking advantage of your sister. I agree with Gigi11 totally. Hugs to all but take some control back over your life. Parents will do or say anything to get what they want at anybody's expense. Yes it may come from fear, but why do we have to suffer. Be your own advocate! Good luck to all, (A different Joyce)
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It's remarkable how many of the topics on this forum begin with "How can I convince....?" Sure, agreement is nice and makes life go more smoothly and better to have than not. And yes, there's the whole question of respecting people's autonomous decision-making power. So it's easy to fall into what I call "arguing about reality."

When the situation is serious and it is what it is, agreement is largely besides the point. If there's a painful reality I don't want to deal with, and you try to convince me about it, you actually undercut your own progress, in two ways.

One, you demonstrate by your attempt to convince me, that there's something to discuss about this reality, it's actually arguable, up for grabs. So I get to think maybe it's not that cut-and-dried after all, and maybe I can actually win this argument.

Two, you offer me a great way to NOT deal with the situation, NOT go in the direction that's needed. Instead of you just getting on with it and doing what needs to be done, there you are hung up on getting me to agree. And I can just keep not agreeing.

Here's a silly analogy: Suppose the house is on fire. You know it, but I don't know it or maybe I just can't deal with the idea. Please don't stand there and list all the reasons you think the house is on fire! Grab my arm and get me the heck out of there. I may or may not ever "get it" or thank you, but at least we'll both still be alive.
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alwayslearning, thank you for that insight!
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Perhaps you should tell your sister to do what she feels is best for herself - if that means moving to an assisted living facility, then she should do it. She seems to be doing quite well given the fact that she's been able to maintain employment, and realizes she needs the help of an AL facility...heck, maybe she's "excited" about venturing out on her own and living away from your Mom - let her. Your mom is 92 and her body is obviously beginning to fail - I'm sure your mother realizes this, but she is probably worried about your sister & what your sister will do "without her". They've lived together all of your sister's life - they've got a co-dependency going, and it's going to be difficult for the two of them at first, but for your sister's sake (and for your mother's safety) it must be done. I don't think parents realize how stressful it is on the child who is taking care of them - they get so absorbed with how they are feeling instead that it doesn't occur to them all of the emotional ups and downs eventually take a toll on their caregiver. Ease your mom gently into the reality that she will be staying at the nursing home "until she is strong enough to walk again without needing help" - you know it probably won't happen, but it won't crush her hopes either.
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Hi KathyB, I really hope you go back and read Tennie's and Momsadvocate comments thoroughly and thoughtfully. Although many of the other comments were somewhat angry/or defensive of your sister (which I can understand as well) I think from the tone of your post, that your Mom is not a mean, abusive, and selfish person. She has lived all of those years in her home w/ your somewhat handicapped sister. The two of them were probably over the years good companions for each other, and reliant on each other for many things. Now the tables have turned somewhat, and your Mom's needs have become overwhelming for your disabled sis. I think the "fear factor" is huge in your Mom's outburst that she will die in a nursing home. She's scared to death, and part of it could be as suggested by Momsadvocate, that she is frightened about what will happen to your sister without her. She may feel that your sister is lifeline. And if that is taken away from her she will die. That is sad, and I don't think it comes from a mean-spirited or selfish place. It comes from a desperate and fearful place. I really liked Joanne's idea of seeing about finding a place for both your Mom and sister together. Many Assisted Living places have nursing wings that are connected. They could go back and forth, visiting each other and maintaining that close connection. I feel that your Mom is being "thrown under the bus" by some of the comments and surely she doesn't deserve that. As Tennie suggested, talk with your Mom about what's happening and the hardship this is causing for your dear sister, and let it "sit in her head" awhile. Best of luck Kathy. Two people you love are vulnerable and it's a tough decision for you to be faced with.
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Perhaps as has been said, they should both go into a nursing home then you could open the door for both secure and cordial relationships.
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I was in that situation as a private caregiver. I had a client with a live in child who was mentally handicapped. His mother was in dire need of assisted living and would not go. She never out right said she was worried about her son, said a lot of what you mentioned. She went as far as to keep her caregivers, she needed 24 he. Care, without having money to pay us for over a month promising that she was waiting for a check to come through. And she would pay us. Never happened, am owed $2000, don't care about that. But she was finally put in assisted living thanks to her POA Who finally stepped up. Basically she may feel she's abandoning your sister, I wish you luck and hope you can find a solution. Your mom is grown up, she may just be scared about leaving home and your sisters well being.... Good luck hun
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Can they go to the same facility, with different levels of care? this could relieve alot of the stress for both of them, and compant too?
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I haven't read through all the comments, but I have just gone through a situation like this. My mom is 96, with CHD, macular degeneration, lymphadema, and dementia/Alsheimer's and I am the disabled daughter taking care of he (two major, permanent disabilities)--until last week. when I bit the bullet and had to place her in a dementia care facility because I can no longer take care of her and all her constant, 24 hour needs. There is no explaining this to her and she is of the generation that wants to stay in there home to the very end. That's a nice theory and I wanted to try and make that possible, but with my health deteriorating, I just can't. My sister and I made up a "therapeutic lie" to get her to the home where we had decided she would be comfortable and in good care. That worked, but she doesn't like me much now. Just before I left her there, after trying to explain why I can't care for her any more because my health is being badly affected (If I get sick, there will be no one to care for her at all), she said, "You have just dug my grave." So, you have no good choices in this kind of situation. You just have the decision to make that will be the best for all parties involved.
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This seems to be a common theme. Elders refuse to go to a NH. My MIL is of the belief that people put their loved ones into a home because they don't want to fool with them anymore. She refuses to go. She lives alone at this point and I look in on her twice a day and bring her medicine to her since she can't dispense her own meds anymore. She's in the mild to moderate stage of Alzheimer's now and I honestly don't know what we'll do when she can't take care of herself anymore. Dh and I are not able to take her in as we're raising two children and don't have room, plus we feel that a trained professional would provide better care than we could. She wanted my niece to come live with her and look after her but that hasn't happened. She's currently mad at my niece because of it. She almost acts like niece owes it to her or something, saying she needs to move in with her and take care of her. My niece is single, no kids so I guess she figures she should do it.

Right now she's also sick with a bad cough. She has COPD with chronic bronchitis and my daughter is also at home from school because she's sick. I'm taking my daughter to the doctor and have called MIL's doctor to have something called in for her. I wonder what would be the best approach to my MIL. She's one of the most stubborn people I've ever met. I love the woman dearly but she is extremely stubborn.
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MamaBug and all,
This is one of the tough ones to handle. This generation is so stuck on being in their home. It's like the house owns them not the other way around. My mom called this morning crying and begging for me to come and get her and take her home. I just can't. Fortunately, the help at the home where I took her seems to be handling her very well since this is the first time she has called since being placed there. That makes me happy, but listening to the pleading and begging and tears makes me quite unhappy. But, it's part of what we have to do. Explaining to her that I can't take care of her any more is just leading up to that day when I'll have to tell her that she won't be coming back to her home at all. None of this is easy. It's nice to try to "convince", but sooner or later we all have to stop trying to convince and just lay it out like it is. You won't be coming back home. Hopefully, my mom, being a stoic, will finally accept things as they are and just enjoy the times we will have together when I visit and take her places for the day. I hope......
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TAKE THE DOGGONE BULL BY THE HORNS AND DEAL WITH IT!!! STEP IN. GROWING OLD IS NOT FOR WHIMPS. Lol, I have to laugh at myself lolololool I have the biggest heart I know, but what comes out of my mouth on this forum I sound like a heartless, mean, grumpy woman. My mom is from Boston she is Sicilian and is not easy at all. No details now but lets put it like this a OT lady just quit because of my mom. Gotta Love Her.
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As a nurse, I do not know what you mean by "deconditioned", however, your mother and your sister both need help. As POA you have to make decisions "in the best interest of your wards" and my suggestion would be to put your mom at the nursing rehab facility who know her and put your sister in another facility. This relationship is very enmeshed, and your sister's overeating is a result of her frustrations (perhaps). She wants to live with others and this would be a good thing to get her weight manageable. Your mother is playing the "I'll die" card for all its worth, and do not listen to it. Make tough love decisions and both will do much better. Good luck!
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Wow.
Sounds like Mom is guilting your disabled Sis into thinking preventing Mom coming home becomes Sis's fault if Mom dies--which will happen one day, ANYway.
That's pretty sadly inappropriate of her to do, but kinda goes with the territory of an elder losing control of their abilities/freedoms, lashing and conniving at whoever they can, to get some sense of control back in their lives.

It sounds like your disabled Sis might be subject to more abusive verbals from Mom, if she stays too nearby.

Love that house burning down analogy!

But lets say, MAYBE with enough in-home care [24/7 !!!]
both of them could stay home.
It might not be the right thing; it might not work for them.
But let's pretend they are OK living under the same roof, --IF-- there were enough decent in-home care....

There might be a sizable amount of equity for it in the property, depending on location and condition of property.
What if...
the home were put into Reverse Mortgage, in BOTH their names.
...that means, both can use the equity to pay for expenses of 24/7 in-home care, instead of both of them going to facilities right away.
BOTH of them being on the Reverse Mortgage, means even when one dies, the one remaining still gets to stay there until they die.
[[or until both of them MUST go to a facility]]
THEN the property is either paid off by remaining heirs, or sold to satisfy the Reverse Mortgage.
At this time, I THINK that can be done with a Reverse Mortgage--I THINK it does not have to be only spouses that can do this--but you can sure check this with Legal consult at your local Area Agency on Aging.

OTH, if them being under same roof is a bad idea, even with 24/7 care there, get Sis moved out fast, to that facility that can care for her.
That just makes it impossible for Mom to move home alone [though she might try to convince everyone she can, or threaten to get herself out of where she is and get herself back into her house somehow].

Be sure to reassure Sis that Mom's health and eventual death are NOT her fault!
That's just Mom trying to get some sense of control back into her life, and speaks of her own fears.
Mom probably most desperately wants to keep at least some of her family together, in her familiar home of so many decades.
Letting go of that, means death is indeed, closer and more lonely for her in a facility, not how she pictured it.
Mom is afraid; that needs soothed, too.

It's OK for you to just firmly, calmly tell Mom, "you can't come home anymore; there's no one there to take care of you or help you", and, "it's illegal for you to be allowed to go home unassisted, and no one's there to take care of you anymore"--stuff like that.
She won't like it at all, but it looks like a fact-of-life.
Keep reassuring her she will have visitors, she is loved, and the care she is getting where she is, is the best thing for her--and your Sis.
Reassure her that Sis is getting better care she so badly needs, where she is.
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It was hard for my mom to go into a nursing home. I stewed about it for a bit.
Then I said to her "Mom we're going to visit nursing homes today (3). I want you to pick out the one you like the best and think you will be happiest there." We did, she did and the rest is history.
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It is possible that your mom is speaking from fear.
However, at this age, it can be difficult to ask her to move to a nursing home.
A possible solution can be to arrange a 24 hour nurse for your mother at home. Once your mother is at ease with the nurse, you can ask your sister to move to an assisted living facility.
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would it be possible for both your sister and mom to go into the same assisted living place? maybe that would make her feel better knowing that her other daughter will be close by. or have an aid or whatever they are called, come and sit and talk with all of you about the need for the safety of your disabled sister not being able to handle the work load anymore of being a caregiver. she might understand a little better coming from someone else. good luck.
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Thanks to all for your input! I can see that I do not need to convince my mother what she needs. I know that she will not be able to return home, that's enough. I have found assisted living for my sister, and a home for mom!
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Kathy, awesome!
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Great news, Kathy!!
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