She’s wheelchair bound; she can’t stand up alone due to her extreme fear of falling, won’t even cooperate with a physical therapist. BUT when she desperately wants to get out of there, will try to stand up out of her chair only to fall down. At night she flails around in bed trying to get out of it..and then what? fall to the ground! She has a long-term catheter because she’s unable to pee without it.
She’s currently in a nice clean 6-bed facility. They take good care of her, but she desperately wants to come home. When I visit (daily), she’s fixated on going home with me and demands I don’t dare leave without her, when I must eventually. It’s horrible! I’m alone, am 85, and I can’t possibly give her the help she needs at home. Now again I ask, is in-home care for her a real possibility? I personally don’t see how it could be, but asking anyway.

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My husband had LBD and Parkinson’s… when he asked why he wasn’t at home … I told him truth … I couldn’t take proper care of him at home… he would run out during night saying he was meeting friends … had hallucinations delusions… I had 24 hr care but it was truly crazy … until I found really nice private care home …there he was safe and well cared for … I visited everyday and took him on outings .. haircuts restaurants … parks … ice cream .. the 2nd year he was stuck in wheelchair and couldn’t transfer …
we had lunch /dinner everyday .. lots his favourite foods … takeouts etc …
i think he understood He needed lots care was always happy see me and I hope he forgave me … but the guilt was always there …
he was safe and well cared for and I was with him everyday… we were able to be husband and wife with dignity till end .
Helpful Answer (12)
Reply to Helenn

Anything is possible, but is it practical and sustainable?

You already know the answer. As hard as it is, she's probably better off where she can be cared for and not by you. You are wonderful to go see her everyday. But let the CG's do their jobs.

I'm so sorry for what you are going through,
Helpful Answer (10)
Reply to Midkid58

So sorry you are going through this. The journey many of us -- including you -- are on, is not a fun one.

No one person on their own can safely provide the level of 24/7 care your loved one (LO) likely needs now. Safety and proper care for you have to come first, even over the pleadings of the LO to "go home."

In know from personal experience -- dealing with my mom in a similar situation -- this is so, very hard. It breaks our hearts to hear the "take me home pleadings" from a LO, but that reality often is not possible.

I am not a physician, not a nurse, not a physical therapist, not a psychologist, not a dentist, not an optometrist, not a social worker, not a podiatrist, not a dietician, not medical transport, not a 24/7 on-call aide; all of which my mom's highly rated nursing home has and she needs all of those services. Trying to be or take on all of these positions -- so proper and safe care is proved to your LO -- as one person 24/7 is not doable. It is not feasible.

Accepting what your LO wants is not feasible is the hardest part. Trying to explain it to them is unrealistic too because with dementia their ability to understand and reason -- much less remember -- makes such explanations impossible. Best as others have said, to come up with a brief simple response and to get comfortable say the same thing every time the topic comes up: "When the doctor says it is safe, we can talk about it then." And then change the subject; distract and redirect to an entirely different topic if you can.

Now if resources are not an issue, it could be a different matter. We have another family member -- she is 96, has dementia and host of other issues, including not able to walk, not continent -- who has remained at home. Her husband left her with a boat load of money. So her adult kids opted for spending it all on 24/7 care so she could remain home. The cost for 3 full time aides -- they split shifts for the week -- is $10K a week and that does not include the weekly visiting nurse or other services. At $40K per month plus the other expenses, it will be about about 1/2 a million for the year. Obviously, most people do not have this level of resources for quality 24/7 care at home......
Helpful Answer (10)
Reply to Sohenc

I know this is terribly hard but do not bring her home. She is safe where she is and at 85 caring for her will be extremely difficult. What happens if you bring her home and then you have a health situation of your own? What happens to her then? Leave her where she is safe and you have piece of mind.
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Reply to Caregiverstress

I'm so sorry you are both going through this.

It sounds like she is Sundowning. This is a feature of dementia that usually starts to happen in the afternoons. The "home" they wish to go to is actually their childhood home since that's what is in their long-term memory.

At-home care is possible but is it beneficial? The caregiving arrangement has to work for both the care receiver and the giver. In home care for her level of need will be very, very expensive. Eventually 24/7 in-home care will exceed the cost of a facility.

If she is a fall risk at night, how do you expect to get any sleep? Even if she has devices in place that prevent her from successfully getting out of bed, could she still scream for you?

Others will post their personal experiences. I wish you much wisdom and peace in your heart as you come to conclusions.
Helpful Answer (6)
Reply to Geaton777

Blame it on the doctor. Say that you're sorry and wish she could be home with you but the doctor says it would not be safe.

Have a plan for how to change the subject after you tell her this same answer to going home every day. Be ready to talk about something else right away.

Maybe she needs some additional anti-anxiety pills?
Helpful Answer (6)
Reply to againx100

Only you know whether you can afford 24/7 round the clock at home care for your wife, and whether you yourself can bear the burden of such a thing. I don't even know that one caregiver would be enough to manage her needs; you might need two, and then an overnight caregiver, upping the costs significantly. If you can't afford such costs, then the answer is a flat out no, and that's that. If you can afford the astronomical costs, then you have to ask yourself if YOU can bear the burden of having your wife around the house 24/7 being uncooperative and suffering from Lewy Body Dementia and PD? There is no shame in saying No, I cannot bear such a thing. Very few of us would be able to, in reality.

That said, I am so sorry you are faced with such a situation. That illness of this magnitude has put your wife AND you into such a state where you're both miserable and suffering daily. Where she is insisting on 'going home' and you're faced with dealing with her demands all the time. That is very wearing on a person, I know. My mother lived in a wonderful Memory Care ALF for nearly 3 years with advanced dementia and I had to deal with her wanting to 'go home' and all sorts of other ugliness. It wears a person out, is what it does. It lingers on one's mind and strips the joy out of life. It creates guilt and a sense of a dark cloud hanging over everything, and like we don't deserve to laugh or feel good b/c our loved one is suffering so. Is that how you are feeling too? If so, I get it. I'm not sure there's any 'answer' to such a situation, either, and if there is, I wasn't able to find it myself for the duration of my mother's stay in Memory Care. The only relief came when God called her home this past February and took her out of her misery and back to wholeness once again, to be honest with you. Nobody wins when disease of this caliber is present; we all suffer.

Sending you a hug and a prayer for peace with such a sad and debilitating situation.
Helpful Answer (6)
Reply to lealonnie1

My heart goes out to you both. You’re clearly a dedicated, loving husband. Please, this lovely small six bed facility is equipped and trained care for her specific needs. Bringing her home will inevitably lead to even more heartbreak.
Helpful Answer (6)
Reply to JeanLouise

Absolutely not. She will not be safe at home. Remain her husband and let the professionals be her caretakers.
Helpful Answer (6)
Reply to Kristen2037

For the past 5 years my mother - now 95 - has lived with me. I'm 63 years old now and work very hard to stay strong and not let my health decline.

Caregiving will definitely threaten mental, spiritual, emotional and physical health.

If I were 85 years old there is no way.

My mother desperately wants to go home as well, which is her childhood home with her parents. I think that goes with dementia.

As it is, you can sleep at night without interruption, you can move about life as you see fit - you're not trapped at home. If your wife comes back home, those two things will end for you.

Even if you can afford night help, unless you live in a castle you're going to wake up and hear anything that goes on, thus interrupting your sleep.
Helpful Answer (6)
Reply to southiebella

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