I am copying your profile information so responders here can see what you and your sister are dealing with. "My sister and I are primarily responsible for our Mom, with my sister physically helping her 75% of the time. Our mom has dialysis treatments 3 times a week. My sister drives her there at 7 a.m. Mom decides at least once or twice a week that she just can't go to dialysis. She does not grasp the fact that missing dialysis is not an option. She has been in and out of the hospital 3 or 4 times in the past two months. We know she needs to be in assisted living. At this point our problem is convincing her. Being able to afford it is another problem we are having but can probably figure that out with us contributing monthly. see less
I don't know if there is dementia involved, but from her deep denial it would seem so. I don't know if either of you is POA or not. At some point, when the burden is too much on the family it is not a matter of "convincing" but of "informing". You cannot convince someone with any level of dementia OR denial of anything.
You admit your sister is responsible for 75% of the care. I'm hoping that mother doesn't live with either of you, as everything will be thereby so much more difficult if you've painted yourselves into that corner.
You have fallen into the deep black hole that claims many care givers. You feel responsible for your mother's happiness. You are no longer daughers, but caregivers. You didn't cause this and can't fix it, and I only hope against hope that your mother was given ALL OPTIONS as regards dialysis. As a retired RN I would never accept it, and would be willing to have good end of life care instead.
Given you did not cause/fix this it's time now to level with HONESTY with your mother. Tell her that you and Sister are both unwilling/unable to provide the level of care she now requires. That you will not be helping her with appointments and dialysis care in future. That she will require placement now. She will be furious. She will be broken-hearted. She will accuse you of any number of mean and cruel intentions, and will be mourning one of the last awful losses that age and medical care dependency is a precursor of. The only other final loss before death is that of mind and ability to make decisions for one's own life. She will likely lash out at you. You can grieve, mourn, weep and wail with her for this is worth grieving. But you cannot allow her to avoid the facts, the needs and the truths and the decisions you have made for your one and only lives.
I am so sorry, but wanting our seniors to WANT and AGREE to all this is asking a bit much of them at a time they are at their weakest and most wanting. There is nothing to WANT or to LIKE or to find ACCEPTABLE about this. It is a great tragedy.
I wish you the very best, but throwing your own lives on her funeral pyre will help NO ONE, and may well kill you off before her.
When it was time for me to put my husband in assisted living, it wasn't a "honey, it's time you are in assisted living, you'll get more care there." It was, Honey, I have to go away for a few days and I'm going to take you to a place where you will have some free time, maybe meet some new people, and you will have someone giving you your meals and a nice place to be. You will sleep overnight until I get home." His dementia didn't allow him to think I might be lying, nor his physical condition allowing him to fight back with me. The facility asked me NOT TO visit for 3 weeks, which I complied with. When I visited him after the 3 weeks, he accepted he was in a place they fed him, got him to shower, take for walks, take him to the movie room or to play cards with others. And to happy hour where he did not get drinks, but some entertainment for a half hour. I visited him later and he did not fight with me for "doing this to me". His dementia didn't let him think that far. He was over 200 lbs so keeping him at home where he could fall, walk out of the house when I was not in the room with him, etc. was not an option. My concern was his safety and me NOT being charged with neglect if he went out into the street. He loved to take walks. I learned to let him go, and I discreetly walked behind him, slower pace, enough behind he didn't know I was there. We weren't far from a main road 55 mph type, so I had to keep an eye on him if he decided to take a different route walk. Lies to the demented is not a sin. It is a safety measure to protect the demented person to save himself from getting hurt or killed.
POSTSCRIPT to my earlier comment, Laura-- one more thing. Now is time to get all papers, POA and etc into effect and to go over Mom's finances with her. If she has enough to self pay in care for a while be sure it is someplace that will allow her to stay on Medicaid when her funds run out. Then apply for Medicaid for her in a timely manner. She will spend her own money on her own care and the government will fund the rest for her lifetime. If she has home or car she can keep those until her death; then medicaid will do clawback on sale profits on those things at her death. DO NOT USE YOUR OWN MONEY. First of all, no one's that rich. Secondly, it will take you and your Sis a lifetime to save enough so that you are not in the position your Mom is now at the end of your own lives. Your savings and your assets are for YOUR CARE.
You can't convince someone with dementia of anything. Even if they nod their head and say they understand, they really don't. And if they actually did understand for that minute, they'll forget soon after. Dementia robs them not only of memory, but the ability to understand, reason, or recognize their own deficits.
When left to their own devices, people with dementia can end up living in filth, eating spoiled food, forgetting to eat at all, walking outside naked and freezing, yet in their mind, they don't think they need any help at all. And if they do recognize that something is wrong, like a toilet accident on the furniture, they're unable to understand they did it themselves and blame it on someone else.
My aunt had accidents all over the carpet and beds and was enraged that I stayed at her neighbors home when I visited her until we had it professionally cleaned. She couldn't understand the filth.
Let me ask you a question... What are you doing for her that makes her think she does not need AL? Are you doing her shopping? Cleaning? Setting up her pills? ANYTHING you do FOR her props her up and fulfills the illusion of independence.
My LO had shopping, cleaning, laundry, setting up pills, bills, transport arranged & appointments made.
I call it The Magic Doll House.
Different - as a this was a younger person with disabilities & the tasks done by the well meaning family. But same result: did not see or feel how much help was being given, therefore, did not see or feel that a higher level of care was needed.
In fact, my LO told a Social Worker "I live alone, independantly".
Once all the help was listed down, the SW reprased "You are living alone, dependantly".
It was suggested for a kind transistion, a Psychologist could assist to move the thinking along from denial to acceptance.
Or there's the *hard way*. Await a crises to force change.
@ Taarna, I agree and all too often people think that skilled nursing care can effectively be done at home but I do not see this as being possible. If so, this would likely cost thousands of dollars to have certified people coming in shifts to help with getting in and out of bed, baths, changing pullups or diapers, helping the person change positions every 2 hours and etc. I think our LO do better in a place where they can be cared for.
Your profile says your mother has dementia. If so, she has lost the ability to reason and make sound decisions in her best interests. This means she will most likely never decide or cooperate with moving to managed care, just like she’s making the poor choice to refuse dialysis. In fact, have you considered her refusal of dialysis (also noted in profile) possibly meaning she has tired of the treatment and perhaps there should be a consideration of stopping it and pursuing end of life care? The dementia may also mean she will need memory care instead of assisted living at some point. Consider heavily of it’s wise for you to financially contribute to her care. With all of her conditions, it may be needed to use nursing home level care. Medicaid can help with that cost when she cannot pay any longer. Please look into all options, be sure documents such as POA for healthcare and financial decisions are in place, and consider seeing an elder care attorney. You’re in the time where you’ll act for mom despite her wants, to help with her needs
Maybe stop helping her in anyway, and ask others to stop, just for a little bit and see if she realizes she needs to go into a home. I know it sounds mean, not sure if I could do that, myself, I'd be so worried about her.
Laura, is it possible to apply what I call the 'Holiday Test' of logic to Mom's situatuon?
Your sister & yourself are Mom's caregivers, providing huge support & care. Right?
In therory, if you & your sister both took a week off, the same week, took a holiday together, what would that look like?
Could Mom cope?
Arrange her own transport to her medical appointments? Be OK at home with meal deliveries & groceries you pre-arranged? Be OK with sitters or care staff coming to assist?
I'm not asking what Mom would SAY.. that can be "Oh, I'll be fine, I'll manage."
I am asking what you think would happen.
If Mom could not cope - then she is dependnant on you. Therefore you are now in charge.
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"My sister and I are primarily responsible for our Mom, with my sister physically helping her 75% of the time. Our mom has dialysis treatments 3 times a week. My sister drives her there at 7 a.m. Mom decides at least once or twice a week that she just can't go to dialysis. She does not grasp the fact that missing dialysis is not an option. She has been in and out of the hospital 3 or 4 times in the past two months. We know she needs to be in assisted living. At this point our problem is convincing her. Being able to afford it is another problem we are having but can probably figure that out with us contributing monthly. see less
I don't know if there is dementia involved, but from her deep denial it would seem so.
I don't know if either of you is POA or not.
At some point, when the burden is too much on the family it is not a matter of "convincing" but of "informing". You cannot convince someone with any level of dementia OR denial of anything.
You admit your sister is responsible for 75% of the care. I'm hoping that mother doesn't live with either of you, as everything will be thereby so much more difficult if you've painted yourselves into that corner.
You have fallen into the deep black hole that claims many care givers. You feel responsible for your mother's happiness. You are no longer daughers, but caregivers.
You didn't cause this and can't fix it, and I only hope against hope that your mother was given ALL OPTIONS as regards dialysis. As a retired RN I would never accept it, and would be willing to have good end of life care instead.
Given you did not cause/fix this it's time now to level with HONESTY with your mother.
Tell her that you and Sister are both unwilling/unable to provide the level of care she now requires. That you will not be helping her with appointments and dialysis care in future. That she will require placement now.
She will be furious. She will be broken-hearted. She will accuse you of any number of mean and cruel intentions, and will be mourning one of the last awful losses that age and medical care dependency is a precursor of. The only other final loss before death is that of mind and ability to make decisions for one's own life. She will likely lash out at you. You can grieve, mourn, weep and wail with her for this is worth grieving. But you cannot allow her to avoid the facts, the needs and the truths and the decisions you have made for your one and only lives.
I am so sorry, but wanting our seniors to WANT and AGREE to all this is asking a bit much of them at a time they are at their weakest and most wanting. There is nothing to WANT or to LIKE or to find ACCEPTABLE about this. It is a great tragedy.
I wish you the very best, but throwing your own lives on her funeral pyre will help NO ONE, and may well kill you off before her.
He loved to take walks. I learned to let him go, and I discreetly walked behind him, slower pace, enough behind he didn't know I was there. We weren't far from a main road 55 mph type, so I had to keep an eye on him if he decided to take a different route walk. Lies to the demented is not a sin. It is a safety measure to protect the demented person to save himself from getting hurt or killed.
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DO NOT USE YOUR OWN MONEY. First of all, no one's that rich. Secondly, it will take you and your Sis a lifetime to save enough so that you are not in the position your Mom is now at the end of your own lives. Your savings and your assets are for YOUR CARE.
When left to their own devices, people with dementia can end up living in filth, eating spoiled food, forgetting to eat at all, walking outside naked and freezing, yet in their mind, they don't think they need any help at all. And if they do recognize that something is wrong, like a toilet accident on the furniture, they're unable to understand they did it themselves and blame it on someone else.
What are you doing for her that makes her think she does not need AL?
Are you doing her shopping?
Cleaning?
Setting up her pills?
ANYTHING you do FOR her props her up and fulfills the illusion of independence.
I call it The Magic Doll House.
Different - as a this was a younger person with disabilities & the tasks done by the well meaning family. But same result: did not see or feel how much help was being given, therefore, did not see or feel that a higher level of care was needed.
In fact, my LO told a Social Worker "I live alone, independantly".
Once all the help was listed down, the SW reprased "You are living alone, dependantly".
It was suggested for a kind transistion, a Psychologist could assist to move the thinking along from denial to acceptance.
Or there's the *hard way*.
Await a crises to force change.
I agree and all too often people think that skilled nursing care can effectively be done at home but I do not see this as being possible. If so, this would likely cost thousands of dollars to have certified people coming in shifts to help with getting in and out of bed, baths, changing pullups or diapers, helping the person change positions every 2 hours and etc. I think our LO do better in a place where they can be cared for.
Your sister & yourself are Mom's caregivers, providing huge support & care. Right?
In therory, if you & your sister both took a week off, the same week, took a holiday together, what would that look like?
Could Mom cope?
Arrange her own transport to her medical appointments?
Be OK at home with meal deliveries & groceries you pre-arranged?
Be OK with sitters or care staff coming to assist?
I'm not asking what Mom would SAY.. that can be "Oh, I'll be fine, I'll manage."
I am asking what you think would happen.
If Mom could not cope - then she is dependnant on you. Therefore you are now in charge.
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