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

When my mom was in the memory care facility and reached a level very close to what you are describing with your loved one, the staff looked at the refusal to eat, possibly inability to eat, was typically a sign that death was near. I can’t tell you how many times this happened and then lo and behold one day she would eat her breakfast! This pattern continued for a few months and then my mom did pass away. She was so far gone intellectually that it made no sense. The tube feed her or hook her up to IVs. It did make sense that this progression was something the train staff so regularly so that helped me feel less guilty about not doing something to make my mom eat. It was really really hard. Maybe it was just unique with my mom, but the staff at her facility insisted that it was a pattern that they often saw. HTH.

I did training to volunteer for our local hospice and we were educated about this stage, and told it was better not to force anyone to eat. Offering a mere taste of something for pleasure was okay if still possible.

Two years later my mother stopped eating for 3 months at age 95 (with vascular dementia, serious heart issues etc.) and didn't leave her bed, I offered ice cream and she would have, literally, half a bit. At first I gave her Sustacal but pretty quickly yielded to what was going on.
She lost 45 pounds.

My mother mysteriously resumed eating and getting out of bed for a month, then died peacefully at hospice after having chest pains.

They can live for awhile without food but without water life ends quickly. We did not do any IV hydration.

Have you talked to the hospice ppl? What do they say?

Jag arbetar som sjuksköterska och följde min mamma som blev dement, min syster följde henne sista veckan och sista dygnen med sång och musik, hålla och smeka handen, berätta minnen. Ibland satt vi bara och berättade minnen och när vi spelade hennes musik frågade vi -minns du? om hon inte svarade så berättade vi lite barndomsminnen.
Om hon inte ville äta, så prova gräddglass med förtjockningsmedel teskedsvis eller grädde med lite sylt från flaska. Till slut tappar de sväljfunktionen och då kan man ändå stryka något gott på tungan i tunnt lager, mixa banan. Munvård viktigt köp munvårdspinnar man kan återvina dom genom att doppa dom i munvatten för barn. Värme och leenden och smeka kinden sakta. Bara att du/ni sitter där och jåller handen kan räcka. Det är svårt när de inte alls vill/förstår att äta men de är sällan hungriga. Styrkekram!

Hi @caroline58, I inserted your text into Google translate to translate the Swedish message into English:
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English translation:
I work as a nurse and followed my mother who became demented, my sister followed her last week and last days with singing and music, holding and caressing her hand, telling memories. Sometimes we just sat and told memories and when we played her music we asked - do you remember? if she didn't answer we told some childhood memories.

If she didn't want to eat, then try ice cream with thickener by the teaspoon or cream with a little jam from a bottle. Eventually they lose the ability to swallow and then you can still smear something good on the tongue in a thin layer, blend the banana. Oral care is important buy oral care sticks you can recycle them by dipping them in mouthwash for children. Warmth and smiles and caressing the cheek slowly. Just that you/you sit there and wail your hand can be enough. It's hard when they don't want to/understand how to eat at all but they are rarely hungry. Hugs!

I write it in English, need to check my settings!!
There was a translation on your page that I have now removed! Thanks for the info!!
Patricia

This does seem to be common for later stages of dementia. Easy to say but hard to live with.
My mom has been on hospice about a month. Refuses to eat almost everything. She only wants to sleep.
Doesn't want to talk.

A couple things that helped: change foods, try new things, I cut up food if I could because she forgot how to use utensils. Regarding replacement meal drinks or things like ensure, I opened and it said how good it tasted, and she had a few sips out of curiosity. But, I realize at this point, she will eat what her body asks for.

It's hard seeing loved ones go through this. I hope knowing this is normal is a little help. I have heard that it is not painful for them not to eat. I understand it can be painful for you seeing your loved one this way.

This is a very hard post for me to write, because it goes against everything we as caregivers have done for our entire lives. And it is not about your loved one, but rather about looking deep into yourself.

Let me tell you a story.
Some years ago, my friend and neighbor was in a residential hospice and in very late stage of multiple cancers. She expressed a desire to her husband, and her son and daughter-in-law who had lived with and cared for her for over 2 years, that she was ready to let go - the pain was too much and no amount of medication relieved it completely unless she was unconscious, which she did not want. She had stopped eating for 8 days, and only accepted ice chips or small sips of water. It was very hard for them to do, but they honored her wishes. We were all thinking she would be leaving us within a few days at most.

Another son and daughter-in-law came from out of state to say goodbye, and against Dad's wishes went to the hospice first. He had wanted to explain Mom's wishes and ask them to honor her. Instead, with the best of intentions, they took her foods they though she would like and forced her to eat some. That night she was in great discomfort as her digestive system had shut down and was not equipped to process food. The hospice doctor thought reawakening it probably delayed her passing by up to several days, and she finally had to be completely sedated due to her pain. Afterwards her son felt very bad - he said he just wanted more time with his Mom - not to hurt her.

Years later, when my Mom was in hospice and refused food for the first time, I remembered my friend, and asked Mom what she wanted. She said, "I'm just tired and ready to go. I can't get my old life back, and this one is horrible" (she was bedridden). Together with the hospice staff, we made sure nobody offered food or water to Mom - it was only given at her specific request. She got to talk to or visit one last time with many of her children, grandchildren, sisters and friends Mom passed away, surrounded by a dozen of us singing and praying her home, 5 days later.

Now comes the hard part - if your loved one is in Hospice care, what is your goal in trying to persuade them to eat? The ultimate goal, an easy and peaceful death, does not require food.

Maybe before you next push for them to eat, you can ask yourself these questions:
- Are they still enjoying some part of life that makes them want to stay longer?
- Are they "tired and ready to go"?
- Are they waiting for a beloved friend or family member to bid them goodbye?
- Is it possible I am prolonging their pain or suffering by forcing food?
- Am I pushing them to eat because I am not ready to let them go?

I cried as I wrote this, but I hope it helps you in making decisions for your loved one. You can always ask to speak to the hospice staff for help.

I work as a nurse and followed my mother who became demented, me and my sister followed her last week and last day with singing and music, holding and caressing her hand, telling memories. Sometimes we just sat and told memories and when we played her music we asked - do you remember? if she didn't answer, we told some childhood memories.
If she didn't want to eat, try ice cream with a teaspoon of thickener or cream with a little jam from a bottle. Eventually they lose the swallowing function and then you can still spread something good on the tongue in a thin layer, mix the banana. Oral care is important, buy oral care sticks, you can recycle them by dipping them in children's mouthwash. Warmth and smiles and gently caressing the cheek. Just that you/you sit there and wave your hand can be enough. It's difficult when they don't want/understand to eat at all, but they're rarely hungry. Hug of strength!

Was all of this ruled out: "Esophageal junction problems can be caused by various disorders, including:

Gastroesophageal reflux disease (GERD)
Achalasia
Barrett's esophagus
Other medical conditions
These problems can lead to heartburn, swallowing problems, and an increased risk of esophageal cancer1. Esophageal strictures, which can also result from digestive disorders, are usually treated with a dilation procedure2.

Learn more:
1
Esophageal Disorders: Types, Risks, Symptoms and Treatment
my.clevelandclinic.org
my.clevelandclinic.org
2
Esophageal Stricture: Types, Causes, Symptoms, and Treatment - WebMD"
webmd.com
webmd.com
Sometimes Metoclopramide can help (taken before meals) I would quiz the gastroenterologist. If not satisfied get a second opinion. Despite your mother being stage 4, you need answers for your own peace of mind.
I wish you and your Mom the best.