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.
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.
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)
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.
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.
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.
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.
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.
https://www.todaysgeriatricmedicine.com/archive/JA22p14.shtml
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.