Has anyone else been through this?

I feel You Both Are taking the time and effort to prolong her life. My Mother hid her Dementia as I suspect My Roommate of 4 Years is as well. My Mother developed a UTI and it went awhile before she was hospitalized. I live in Florida and My Mother and Brother resided in each other’s Missouri homes until her hospitalization. An Agent from Alzheimer’s Association said that UTI’s and Covid are contributing to Dementia. I believe it’s the World Today- No Green Space, 8 billion people, animal's extinction, climate change and air quality. I flew up to Missouri and saw My Mom’s house completely empty except a bed, a rocking chair and 3 Pets that were being neglected. Mom quit taking her medicine 6-8 months prior. My Brother Works from home and resides 5 miles away living by himself in a 3 bedroom 2 bath ranch house. Mom’s 12 Year Boyfriend took on Mom for 18 months. I got her on Namenda and Aricept -sp? Aricept by Primary Dr and I witnessed Mom miserably fail a Memory Test. Her Driver’s License was taken away- I gave My Brother POA and We agreed on the Medical however I was NEVER given a copy of the Financial POA. Both My Brother and I made her 2 neurologist appointments due to disagreement. Mom’s Boyfriend took her to my choice and called Me Balling his eyes out that her Brain Scan showed massive holes and Stage 4 Alzheimer’s. We got her on Namenda yet Mom consistently refused to shower or change clothes. $18,000 in her Bank, house 3/4 paid off and her Boyfriend became her HHA. She went ballistic if she was away from her Boyfriend yet even with 4 Covid Boosters she and he got Covid. Boyfriend was telling Me my Brother was evasive towards her care and spending down her $$. I applied for Missouri Medicaid which was a 2 - 3 phone hold and they needed everything but her kitchen sink. I advised My POA Brother not to change her assets - to use her vehicle not title it to himself. He did as he saw fit. Final straw with 78 YEAR old Mom’s Boyfriend was Covid. He packed Mom’s remaining belongings and took her to My Brother’s after 18 months. Mom lasted 4 months- Fell at the Mall broke 1 arm sprained the other. She managed to Mummy Wrap the Bandages banging on My Brother’s bedroom with his girlfriend there. Solution- He dropped Mom off alone at her house and 4 hours later he returned to find with a broken femur bone. Mom went to hospital for a femur rod and hip replacement then orders for a Nursing Home. It took Me 4 months for Me her Daughter and her Boyfriend to find WHERE MOM WAS. She’s at St Joseph in Carthage Missouri. No private phone- Front Desk Only. Brother got our Biological Father involved in Financial POA. The Guy that left Mom for another Woman and gave us up for adoption. I was 3 years old- My Brother 1 Years old. Both of them sold Mom’s house in 3 DAYS for $152,000. With her assets and Bank $$ gone she got Medicaid. She gets $1200 in SSI Widow Benefits. I’m astonished by the lack of communication yet I forgive as God says.
Update on Mom’s new home- They have therapy dogs 1-2x week, Mom’s “Marrying” another Dementia Patient and Her and Her New Best Friend are planning a BREAK OUT OF THE Facility. Mom’s still Very Verbal, strong personality yet her body and mind are dwindling. She is in Diapers and has issues with balance. Brother gave facility Both POA’s. He visits her every other weekend and is attending Dementia Support Groups.
Finding her with a femur break possible bleed out opened his eyes. He bought himself a burial plot and went against Mom’s and Family Wishes to Bury her in Vermont’s Family Cemetery and cremated her.
8 months later I’m still waiting on part of her ashes. Brother now has 2 Classic Cars and Mom’s 2015 SUV.
He called to tell Me he paid for My Cremation, his girlfriend’s, and our life absent Father too. I believe Mom’s better off at the ALF - My Cries for 4-6 hours of weekly HHA at the First of Mom’s Diagnosis were answered with -CAN’T AFFORD IT. 1976 lost everything to treat Brother Spinal Meningitis

A neurologist can diagnose which type of dementia your loved one has and treatments to help. If she is having difficulty eating, you might need to consider a feeding tube. A temporary one can be inserted down her nose into her stomach. A permanent one can be placed through minor surgery into her stomach through the abdominal wall.

By the way, your loved one should need diaper changes every 3 hours or so since she should be urinating that often. If she isn't, please have a doctor check her kidney function.

Dear Mrs. Bell,

It is not unusual for people stricken with Alzheimer's disease to lose all aspects of speech. As far as the feeding goes, there are options available to keep her adequately nourished via a feeding tube. Find a hospice or palliative care organization to assist with your mother. They can supply some home assistance and help you make choices regarding her care. Beware, however, that Hospice care will not include tube feedings, IVs or transport to hospitals. These are tough decisions and hospice staff will guide you through the process.
Turtle

Yes! I have had this very experience! Except in my case, it was not progressive, but suddenly, due to a stroke, my young (then 53 yr old) husband became bedridden, unable to walk, to speak, to eat,.. It was a shock.
But, now, I've been caring for him full time at home for 8 years. And I've learned a lot from the experience. I'm so grateful to have found a forum where other caregivers share their experiences and suggestions. However, I did not know of this years ago when I was struggling and learned a lot on my own.
Some tips for communication:
Be patient with her and learn her non-verbal cues; hand gestures.
Try printing out the letters of the alphabet on a sheet of paper, and put it in a plastic sheet protector. I made mine with 5 letters across and 5 down, I left out Q for a better fit, on an 8 1/2 x 11" paper. When I can not understand my husband, I get it out and he is able to point to the letters to spell out what he wants.
Tips on feeding:
She may not like the consistency of pureed foods.
If she will drink, and is able to drink with a straw, try using a protien meal replacement drink. You may need to add a thickener for an easy to swallow consistency. I use Thicken Up Clear. Or Hormel Thick & Easy clear.
I blend up a batch every morning using boost, thickener, some milk or almond milk, and water, to last all day, as this is his primary source of nutrition, and he prefers it to eating solid foods. For flavor variety, I add some strawberry juice or orange juice. Another good flavor trick is to add some Jello. Dissolve the powder in hot water first, it blends better that way. And a little bit goes a long way - I use half a jello packet for 12 cups of nutrition shakes. That will also help to add a thickened consistency and a little protein and collagen to boot :)
If she is refusing to eat, don't feel compelled to force her. Many people stop eating when they feel they are ready to let go of this life. Or she simply may not need very much to eat.
Good luck to you and your FIL. She is fortunate to have your loving care.

Ask physician for orders for a Hospice evaluation. They will be able to keep her comfortable and provide necessary family support. Her lack of interest in eating is a real message that she's ready to die and should be respected.

I understand. It’s like taking care of a shell of a person. There are services for at home assistance. Search online for them. I had one through work via Bright Horizons, but there are others. I was told by a counselor recently that in most cases there is not pain or suffering for these patients and that they sleep a lot because (caution: subjectivity here…) their spirit is more on the other side preparing to cross over. I was told by the same counselor, I’m trying to do the impossible. I can only do the best I can and not lose myself in the situation or we’ll both go down. And pray, trusting help is coming. This will not be forever. Take it day by day.

This is hard. I’m going through it too, and you and I, we aren’t alone. Blessings.

“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.

Denying her professional 24/7 care may not be the best for her. Visit some skilled nursing facilities so you’ll have an idea what they offer. That way when you and FIL are ready to drop dead from exhaustion, you’ll have the groundwork for a backup plan. Or when you find out you’re inadequate for her needs, you’ll have somewhere to turn.

Has she not been seen by any doctor recently? You need advice. I was told by a nurse at the NH where my resided before passing last April that towards the end it is dangerous to give food (even) pureed. I was brinkiny my mother a light fruity drink from Starbucks but was told 1 more time would be OK but then it could prove unwise as she could choke on it as her systems were shutting down. The last night my mother refused water.

My wife is going thru some of this as to know being able to carry on a conversation or complete one. She sometimes can start and then it becomes jibberish.
I stop her and have her to start over where it became the jibberish by telling her, O.K. I know what you said up to this point, now go slow and tell me what you wanted me to know after that point.....a lot of the time it works sometimes not. But often it get me to the point, by knowing her and her deminer, that I can make out what she wants..I then try to complete the conversation with her by ask did not meant or do you mean. It helps me and does not make her feel embarest.
There is a small part of the brain, somewhat behind the location of the vocal cords, so I was told, that is effect by the dementia, It controls the air or breath as well as the vocal cords to form our speech and it is one of the first things that starts to happen to ones effected with Dementia/Alzythemers.

This may or may not help you, but thought I would send it to you anyway.

MrsBell15: This is commonly known as Aphasia. Keeping the individual at home may not be in anyone's best interest.

My grandmother was at my mom’s home and got pneumonia at hospital and died after 2 days. She quit talking I blended chicken put in squirt bottle and fed her. We also changed her diapers. Sad memories!

@MrsBell15
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.

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.

My mum stopped talking, we did however use a small chalk board and she could read that, She did struggle to write on it. But it would help with communication.

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)

My mother is at times nonverbal and has recently started to speak again. It is mostly when prompted with a question to her, and rarely is it initiated by her. I try to ask her short simple questions or just talk about things in our family or household just to keep her engaged as much as I can. She is also complexly dependent on us to get up, changed, fed etc. I have organized a home health worker to come in at least three days a week to give my sister-in-law a break in the mornings as she is primary caregiver and it is a lot of work. I am encouraging more help at home in order to give my mom a little more one-on-one attention and my sister in law the ability to get out and do things for herself. It’s so important to get those breaks!

My friend's Mom was on in-home hospice for "failure to thrive" for 18 months until she passed (in MN). She was non-verbal that whole time.

My FIL was in in-home hospice at the end stage of his pancreatic cancer.

Keep looking for companies that provide in-home hospice care in your state.

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.

I do wonder if that’s wise: having her stay home. And I mean: wonder - because I see both sides of this. If/ when her dementia becomes cumulatively worse, she - and you two - might be better off with her getting professional help and anticipating visits from you while there. Talk with folks you trust & then follow your instincts.

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.

You mentioned she was discharged from Hospice. Have you tried a different Hospice company. Some do not realize you can choose any provider you wish and are not limited to the one your primary care or other doctor refers you to use. Some Hospice companies may have stricter policies based on how many caregivers they have on staff and the demand for their services.

A friend told me one Hospice company would not take her mother until she was nonverbal. She contacted another company and was able to get services.

What you describe is not atypical. I strongly encourage you to call the Alzheimer's Association's hotline and talk with a counselor.

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

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

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.

I would contact Hospice they maybe Of help so you will Know what to expect .

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.

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.