Stage 4 dementia: Inability to eat and now on hospice: What to do?

Maybe this comment is way off base but will throw it out for thought. One medication I was put on briefly made almost everything taste foul. It was getting to the point that I was almost considering asking to be fed by IV. For me the only things that tasted good were chocolate milk, french yogurt, and Boost. A neighbor experienced something similar but for an unknown reason. One doctor put her on gabapentin which enabled her finally to eat again.

Hopefully you can find something that appeals to her.

I’m so sorry about your mom. Did they re-access your mom’s level of progression after the stroke? As the condition progresses, certain things develop. I’m no expert, but I’ve encountered a lot over the last 10 years as a couple of my family members suffered and continue to suffer with it, Often certain things happen due to the signals the brain sends the body that are faulty due to the Alzheimer’s. And, sometimes there are multiple things going on causing the dementia. My cousin was diagnosed with Severe Vascular Dementia, but years later we discovered she had Mixed Dementia in that she had Vascular (strokes) dementia AND Alzheimer’s.

Have you discussed her condition with her doctor or Hospice staff? As the body, due to dementia, loses the ability to process the food, the person loses the desire to eat. They don’t feel hunger and in fact, that is why eating is not encouraged. It’s the body’s way of reacting to what’s happening. Some people with severe dementia continue eating but most do not, based in what I’ve seen and read. They should discuss this with the family.

Of course everyone is different. Your mom may regain her appetite. I hope you can find the answers you are searching for. I understand how concerning it would be.

@owasippe1990 I'm sorry you and your family are going through this situation.
Was your Mom living independently, with relatives, or in a care facility when this happened?
May I ask what quality of life you can expect for Mom after several strokes and with stage 4 Alzheimer's?
Is she able to recognize you or other loved ones, communicate her desires and whether she is in pain? Did the medical team assess the level of neurological damage from the strokes? Sometimes failure to eat, whether asking for food or not, can be a sign of the body preparing to shut down. And sometimes the kindest response is hospice, to support Mom and the family and keep her comfortable.
I'm sorry you are in this difficult situation - sending you warm hugs and courage for what lies ahead.
Sue

I agree with previous posts about eating in end-stage dementia. My brother couldn't eat, and when "forced" to eat he ended up either choking/coughing up food or with aspiration pneumonia. I believe it is the body's way of shutting down. When my mother was dying of cancer she got to point where she didn't want to eat any more, and I tried everything to have her eat just a little, no luck. It also happened with my grandfather.......they just stop eating....
Big hug to you both, it is not an easy road to travel.

This may be way off too but my husband had a mini series of strokes and just never wanted to eat, saying he wasn’t hungry and lost 50 lbs in 8 months. Went for a routine dental cleaning and hygienist found a growth on the rear side of his tongue which when biopsied proved to be tongue cancer. He said it didn’t hurt, he just didn’t want to eat. It was removed with free margins and after speech therapy for extended time, he now enjoys food again although at a different consistency. Hasn’t gained weight back but isn’t losing anymore.

Years ago I was part of a small group of relatives caring for a terminally ill sister-in-law in hospice. We would celebrate it as a personal success if we got her to eat something when she didn’t really want to.
We wanted her with us longer.
Was this really helpful to extend her life by weeks ?
I now agree with comfort care.

So sorry. I'm watching answers for myself as well. My mom has been declining, started having seizures and is now on hospice. Doesn't want to eat, only wants to sleep. It appears this is normal for the progression but sure is sad to watch.

This is a tough situation - I've been there!
The best thing you can do right now is be with her as much as circumstances allow.

If she is aware and responds, ask if she would like to see or talk to anyone. Bring pictures that will spark her memory. Ask if she would like lotion massaged on hands, arms, legs or feet.

Even if she doesn't respond, talk to her, touch her, sing or play her favorite music, hold her hand.

Hugs to you - this is not easy.

PS My Mom asked for her sons/grandkids to come and serenade her with guitars and favorite songs. But she asked me to do her a favor and not sing. 🤣

That must be very difficult, but a relief to see the end of suffering. So nice your mother had her family by her side.

My loved one had severe dementia for 6 years after early onset at 63. She was on Hospice for 2 years. It was clear she was exhausted at the end.

My 88-year-old husband has vascular dementia and hasn't reached the stage of refusing food yet (loves to eat actually). But what others have said about it being the body's way of shutting down is likely accurate. Over the years, my husband and I have had several dogs that we've basically done hospice care for as they approached death whether from cancer, old age, etc.

One was a dog who developed what is called Canine Cognitive Dysfunction—basically a doggy form of Alzheimer's. She often walked in circles and usually went to the hinge side of a door when we would bring her in from walks or pottying. These were listed symptoms in the online description of the disorder. She also exhibited sundowning behavior, and we took turns sleeping on the couch to care for her during the night. The way she sometimes looked at us, I suspect she didn't always know who we were.

At some point, she started eating less and less as it progressed, then would only eat if I hand-fed her. After a while that didn't work for all food, but she would eat Nature Valley Granola Bars if I hand-fed her those. Then she gradually ate less and less of granola bars and finally wouldn't eat them at all. She passed a few days later. It seemed to be her body's way of shutting down. Seems reasonable to think that human bodies do the same.