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He's in advanced Lewy Body Dementia. We still communicate, though he is blind and almost totally deaf. He's 87. We are handling the hallucinations pretty well. I just hated seeing him bleed on the floor last week. 911 helped and placed him a trauma unit for a while until he came home at 3:30 am. I work hard at not falling myself as I had a stroke. We are not going to any kind of nursing home. That is not viable.

Welcome Gaye1967. I'm sorry you are going through this.

I do have a question. In your post you say "We are not going to any kind of nursing home. That is not viable". I'm just curious - why is it not viable? Because neither of you want it? For financial reasons? Separation?

If it is because of financial reasons - it may be far more viable than you realize, with options other than private pay.

If it is because neither of you want to go to a nursing home - you are in good company. I don't think anyone WANTS to go to a SNF. But sometimes, your options become so limited that what you want and what you need are in conflict.

As others have mentioned - LBD is one of the forms of dementia that really has a heavy fall risk. If you factor in the inability to remember to use safety tools to assist with mobility, as you have already seen - the next fall is just queueing up and its just a matter of time.

I think we all know there is literally no way to prevent someone from falling - not even if you spend every moment of every day with them - you may lower the risk or number but you can't prevent it entirely.

It is so hard to watch someone you love go through this. But you also have to be as practical as possible when doing so. He is blind, almost deaf - this alone would impact balance and safe mobility. But you have to factor in the LBD and the lack of actual memory that any of that applies.

To give you an example - my grandmother who has dementia began to yell the other day that she was blind. My mom turned to look at her and said "Mother, are you blind? Or is it because your eyes are closed? Are you able to open your eyes?" She had momentarily forgotten how to make her eyes open. Mom had to literally walk her through opening her eyes.

This is what dementia does. All of those natural things that we just do - become a task that has to be remembered and executed as they are now.

It's not that he needs to be convinced to use the cane or walker. It's that he doesn't remember that he needs them. He doesn't remember that his body doesn't work the way it used to work. He does what comes naturally to him, forgetting that it doesn't come naturally anymore.

This is why it may become important to see additional caregiving assistance because as he progresses, it may become too much for you to handle on your own.

I wish you the best of luck.
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Reply to BlueEyedGirl94
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How are canes going to help DH if he's blind? He needs 24/7 supervision in a wheelchair full time now. If or when he falls and hurts himself badly enough, the option of a Skilled Nursing facility will be taken off the table and he will be placed against his will, for obvious safety reasons. That's what you tell him to convince him to stay in the wheelchair. How are you both able to function w/o help? Please look into at least hiring some help to assist with cooking, cleaning and showers.

Best of luck to you.
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Reply to lealonnie1
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You can’t convince him of anything . He can’t understand or remember what you tell him . He also can’t see what is around him , or hear you well .

So long as he’s walking around , He will continue to fall and likely end up in a nursing home anyway with a fracture , or head injury .

I’m sorry for your situation
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Reply to waytomisery
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Sounds cruel to me to expect a blind, mostly deaf man with dementia to use a cane or walker, much less be reminded into remembering to do so. I hope it’s unintentional and out of good intentions, but it’s still misguided in my thoughts. The falls will be near continuous and that’s just awful. I watched too many falls with my dad and he had far less going on. In your shoes, my husband would have a wheelchair and professional help
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Reply to Daughterof1930
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anonymous144448 Dec 4, 2024
Right, it seems anyone who falls 18 time in a month is not safe at home. He isn’t getting the care he needs and his spouse expects him to act in a normal way.
(5)
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Lewy's is infamous for removing balance. This is a brain thing, not a leg thing. If he doesn't use a good walker, then he will continue to fall. And falls are often the beginning of the end. There is little you can do short of attaching yourself to his hip about this. He cannot remember to do this. I am so very sorry.
And I honestly think, given your own limitations, that it is time soon to be in ALF for more care. And perhaps in Memory care for hubby. I am really very sorry. My brother had Lewy's and the hallucinations AND the awful balance. I know what is happening to you and I am sorry. But this is no longer safe.
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Reply to AlvaDeer
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Uncertain about your comment "NH is not viable". He has fallen more than half the days in a single month. You struggle with balance. Obviously, he is not going to use canes or wheelchair to move around - either he doesn't remember he needs these helps or he is just refusing. And it doesn't appear you reminding him to do so is working at all.

By viable, do you mean it is not helpful (in your opinion) or not financially possible due to low income or because you don't want to use personal funds to pay for NH? If financial, you should speak to an elder attorney because you may be surprised to find out low income would get him into a NH. Even income over the Medicaid limit for a NH bed can be qualified with trust. If you can't afford an elder attorney, call or send someone to the local Medicaid for Elderly/Disabled to discuss income/bank account balances to see if it's worth it to complete an application.

At any rate, being at home and falling that many times in a month is not viable either. Eventually, he's going to kill himself or create injuries that permanently put him in a bed. At that point, what is the plan to care for him.
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Reply to my2cents
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Oh my.
Gaye, you can not "convince" your husband with dementia of anything.

WHY? did he come home at 3:30 in the morning (the middle of the night!) from the hospital?

The next time he goes to the hospital - and it won't be long - DO NOT BRING HIM HOME! Talk to a hospital social worker - let them know YOU CAN NOT TAKE CARE OF HIM SAFELY AT HOME!

I know you hate seeing him bleeding on the floor. I'm so sorry you are going through this!
He will continue to fall. You can not make him use a wheelchair or cane, or any other mobility device. He will fall again.

He should be in a care home. I don't know why you say that is not viable.
YOU do not need to go to the care home with him.

You can opt, if you can afford it, to move with your husband to an assisted living apartment. You still can not prevent him from falling.

I'm sorry to say it, this is the beginning of the end. He is not going to get better.
He is not going to change for the better and start practicing safer habits.

Either this will continue; He will continue to fall at home, you will call 911, he will be taken to emergency, and come home again, if you allow it.
Or, you will find a suitable care home placement for him.

I know you will miss him. I kill myself every day trying to take care of my husband at home. We are only 63. This has been going on for 10 years.
We were both strong and healthy before his massive stroke, which changed both our lives.
My body has aged badly! I went from strong and fit to barely able to walk in a matter of a few years. In our case, I will continue to try. I will die trying. Because that is my level of commitment, and I am paid to be his caregiver. If I am not doing this, I will have to find a job at age 63, after 10 years out of the job market.
This is the job I choose. And as long as I am able to do it, I will. But at some point, I will no longer be able. That's when it is time for a skilled nursing facility.

At 87, your husband has lived a long life. None of us will live forever. It is time for him to live out his remaining time with the help he needs, with professional and compassionate care. You can not do this.
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Reply to CaringWifeAZ
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“We are not going to any kind of nursing home. That is not viable.”

Yes it is, and you should. You are living in a fool’s paradise thinking you can convince your husband of anything. It’s just as foolish to think you can handle him and yourself. You are already in way over your head and this is hard to accept.

Why are you so against doing what needs to be done? Because this stubborn attitude is going to kill him or you long before a care facility ever could.
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Reply to LoopyLoo
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Please refuse your husband's discharge. Your husband could break a hip or hit his head. I am sorry, but your husband needs to stay in a personal care home. He should be sitting a wheelchair, if his balance is getting worse.
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Reply to Onlychild2024
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My Dad had Parkinson’s with Lewy Body Dementia. I stopped counting after he fell for the 90th time. He was one of those incredibly stubborn men who insisted on living at home when he absolutely should have been in a facility. We finally forced him into one when he was too weak to get out of bed on his own.

Lewy’s Body Dementia is one of the worst types of dementia. You will not be able to handle him if/when he gets aggressive.

I’m sorry but you need to see a Certified Elder Care Attorney to help you qualify for Medicaid for him. They can help you.
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Reply to BeckyT
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