My mother in law was diagnosed with dementia a few years ago. In the past 4 years she has lost the ability to speak and walk or really move in any way. She cannot chew so her food has to be blended and fed to her. My father in law and I change her adult diaper in the morning and move her from bed to chair with a hoyer lift, and at night we change her again and move her back to the bed. It is getting hard to feed her as she falls asleep or pushes the food out of her mouth. This is no way for any person to live, but we can't do anything about it. I guess I'm just looking for someone else who has had a similar experience as most of the things I read about dementia are about people who still talk and move. We really don't know how or why she became non verbal. Stroke maybe...

I will add that she is at home and will stay at home. No nursing homes.

Yes, I have seen this sort of thing many times in the 25 years I did homecare.
I've had care clients who started with me with mild to moderate dementia but who could still do for themselves (eating, toileting, walking, dressing, etc...) and could still be taken out in public, but needed some help. They then declined very quickly over a few years (3 or 4) time to the point of being completely invalid. I had one client who I was with for seven years. The last three years of her life she was a bedridden, non-verbal invalid who had to have round-the-clock care.

You could be looking at several years of your MIL in not just the condition she's in now, but worse. Never say never to a nursing home because you may very well have to place your MIL.
Helpful Answer (13)
Reply to BurntCaregiver

“She is at home and will stay at home. No nursing home” is a wish, not a plan. Making it happen depends on many things, your own continuing health for one example.
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Reply to MargaretMcKen
AlvaDeer Mar 3, 2024
You are having another bout of extreme "wisdom" tonight, Margaret.
I love what you said about this being a wish, not a plan.
I think also it can be magical thinking.
It does us no good to demand of ourselves more than our human limitations can deliver.
They often become non verbal in the last stages. I will say that a dear friend's mom got her verbal skills back after her MD (she is in an Austin Tx nursing home) ordered medical cannibis for her. Her moon is improved and she talks now, though she still doesn't understand my friend is her daughter.

I hope that a DNR is done, and that you will not consider any tube feedings. With so few changes she would develop diarrhea and sores, and likely sepsis.

I would discuss palliative or hospice care with her MD.
I wish you so much luck. You are right that this is really no good way to have a life.
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Reply to AlvaDeer
MrsBell15 Feb 20, 2024
There is a DNR, so definitely no feeding tube. She had aspiration pneumonia about 6 months ago and had to go to the hospital for a few days. We have tried to get her on Hospice a few times, but she was still eating then and they discharged her after a few weeks, due to her not declining in health. She has a nurse and bath lady that come once a week. Other than that it's all my FIL and myself caring for her. She's been non verbal since before she lost mobility over 2 years ago. She can't respond to us, and only sometimes looks when we speak to her.
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First I am surprised that you change her in the morning and then again in the evening.
She should be repositioned at least every 2 hours. And it is at that time that you should check to be sure that she is not wet nor has had a BM. This is important to help prevent pressure sores.

My Husband was nonverbal the last 6 to 7 years of his life.
He stopped walking during the last year.
He was on pureed foods and thickened liquids the last 3 years of his life.
You are right that this is no way to live.
I suspect that along with the Alzheimer's that he was diagnosed with he had Vascular Dementia. The Vascular Dementia can have some very steep, sudden declines. My Husband would be able to do something one day and literally the next day he would not do the very thing he did the day before.

What I would encourage you to do is contact Hospice.
Hospice will provide you with all the supplies that you need as well as have them all delivered this includes any medications she is on. And they will provide a bed with an alternating pressure mattress that will also help prevent pressure sores.

My Husband was on Hospice for the last 3 years of his life. (yes, that is not a typo 3 years)
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Reply to Grandma1954

As many dementias advance, it's very common for the elder to become non verbal and immobile as the systems begin to shut down. Its quite possible shes had strokes or TIAs as well which you won't know about unless scans are done.

Get her doctor to order a hospice evaluation stat because once MIL develops eating issues, she can aspirate food and develop aspiration pnemonia in short order. She'll need to be kept comfortable as end of life processes proceed.

Best of luck with a difficult situation.
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Reply to lealonnie1
MrsBell15 Feb 20, 2024
Thank you, she had aspiration pneumonia about 6 months ago. In the hospital for a few days, I was hoping she'd come home on hospice, but she didn't.
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You may think keeping her home is the most loving thing to do. It isn’t.

She needs 24/7 care that you and FIL aren’t able or qualified to do. She needs changing WAY more than 2x a day. All three of you will suffer if you keep this up. Or will die before she does. The stubbornness and denial with “no nursing homes!” can ruin an elder’s life way more than even the worst nursing home could.

You need to consider other arrangements. I can promise you there are nursing homes out there that aren’t hellholes.
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Reply to LoopyLoo
Fawnby Mar 3, 2024
Totally agree. People who declare that their LO will never go to a nursing home haven’t been the whole nine yards yet.
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Dementia kills the brain. So when it hits certain areas, those areas die. Eventually it hits the area where the heart and lungs are controlled. When that section dies so does the person. I agree, time for hospice.
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Reply to JoAnn29
Anxietynacy Feb 20, 2024
Thank you for that information. I never new that
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Your added comment that she will stay home. No nursing homes is understandable.
I had the same thought, feelings when I was caring for my Husband.
BUT made an amendment to that statement.
My statement was
"I will keep him home as long as it is safe for HIM for me to care for him at home AND as long as it was safe for ME to care for him at home."

I did have caregivers that came in.
He was compliant.
I had Hospice and had the equipment that I needed to care for him.
I have a house that was built accessible so it was safe and "easy" for me.

Obviously since mom is unable to walk or talk you do not have to worry about a lot of the issues that many have to deal with.

It sounds like you and your dad and any caregivers that you have are doing a good job and you are able to manage. If you don't have caregivers I urge you to have some help just to give you a break.

I also have to add...
Please resist the urge (if there is any) to have a feeding tube placed.
When your mom no longer wants to eat or take fluids do not go the feeding tube route.
When the body begins to shut down it no longer has the need for food and to force it can create problems.

Again contact a Hospice in your area and just "interview" them and see what they offer and what they can help you with.
Helpful Answer (9)
Reply to Grandma1954

This is what late stage dementia looks like. Keep offering food but don't try to force her to eat if she refuses.
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Reply to cwillie

Unfortunately, what you are experiencing is painfully common. My wife went through exactly these same physical losses and associated problems. There’s no solution and it’s incredibly difficult to provide care. I couldn’t do it alone and I don’t believe anyone could. Seek as much help from others as humanly possible. Don’t try to shoulder this burden alone.
At this point of disease progression the main focus should be on comfort, cleanliness, prevention of & quick repair of pressure sores, tasty purées, and entertainment (movies, documentaries, animation, Netflix, music, etc. - whatever they once enjoyed), and preserving dignity. I found by-hand feeding taking anywhere from 30 minutes to 2 hours for one meal. I came across a company called “Mom’s Meals” which delivers frozen puréed meals that were absolutely wonderful. Very tasty and my wife seemed to enjoy them. At some point your patient will qualify for Hospice services (or Respite services). Sign up for them as soon as you can. They will help a little.
Helpful Answer (7)
Reply to TonyStr
CaringinVA Mar 2, 2024
Thank you Tony for mentioning Mom's Meals. We may need pureed food for my MIL down the road, and it is encouraging to know that this service is out there!
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