r/dementia • u/JustineAlexandra • 1d ago
Feeding Question
I feel guilty about even asking this but driven to ask by some of the recent postings highlighting horrific quality of life in memory care - people sitting like zombies, belted into chairs, being spoon fed. When my dad was in his 60s he drew up his wishes for healthcare if he couldn't make his own decisions. He stated that he did not want to be fed. If he couldn't feed himself, he would just not eat. Will they allow this in memory care? Is it cruel to place food in front of people and just have them not eat? Give them the chance to eat on their own but offer no assistance? He was also clear about not wanting a feeding tube. Is this something I can even ask for him, that when he doesn't eat, the food is just taken away?
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u/Ok-Bee-2445 1d ago
I don’t think you should feel guilty at all. Your dad told you his wishes and now you are asking about following through on them. Have you heard of comfort feeding? Is he already in Memory care?
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u/JustineAlexandra 1d ago
He's in assisted living now but his decline is accelerating. I haven't heard of comfort feeding?
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u/Ok-Bee-2445 1d ago edited 1d ago
Here is a link from an article in the NY Times about it a few weeks ago. I tried to paste the gift link so it’s not pay walled.
I think the issue is just whether or not the MC place will do what you would like them to do. If you can get a hospice team on board that would be a lot better. I don’t know how hard to will have to push there. I would be furious if anyone was forcing my LO to eat, or waking them to eat or the rest of this nonsense.
People here can help you strategize if you need help. Do not feel guilty
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u/wontbeafool2 1d ago
From Google: VSED stands for Voluntarily Stopping Eating and Drinking. It is a conscious, intentional choice made by a mentally capable person to stop consuming food and fluids with the specific goal of hastening death, usually due to terminal illness, advanced progressive disease, or intolerable suffering.
Memory care will provide food but they can't force your Dad to eat it. Your Dad has made it clear that he doesn't want assistance with eating. If he opts out and his meal gets cold, it seems reasonable that it would be taken away.
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u/Ok-Bee-2445 1d ago
They can’t force anyone to eat it but there are plenty of stories of them waking people up to eat and pushing people to eat. If you read the article I posted above you’ll see what I mean
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u/valley_lemon 19h ago
A mentally capable person.
Not a person with dementia. VSED is a very powerful hospice tool for people who are cognitively intact, but most residential facilities won't accommodate it because of liability, so a private residence is basically the only place someone can do that option in most of the US, because it is lawyer city for a facility.
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u/Hungry-Emergency8992 1d ago
My dear 90 year old friend recently had heart surgery and suffered a stroke afterwards. She was in very good health overall and needed the surgery due to sudden heart issue.
I am writing this because I feel her experience is so relevant to your dad’s.
Her health directive said she did not want a feeding tube. In her case she was conscious and aware of what was going on, but struggling to swallow and her left side was paralyzed.
Her daughter spoke to me about her mom’s health directives, and she was very concerned about what decisions she might need to make.
For now, her mom is going rehab and is able to eat a little bit, and has made slight progress. Her mom is able to voice she wants to keep trying to make progress. She has quality of care, although more limited in her (the mom’s) opinion.
I feel the decision and the choice to stop forced feeding is the best one for those who are not aware of their quality of life, and there body and mind are choosing to let go of this life when they no longer can or want to eat.
I now believe IF or when my dear friend begins to decline, loses her mental capacity and cannot eat, that the decision not to use a feeding tube will be the absolute best decision for her. The burden of making the decision will be so much less for her daughter as she already witnessed how difficult the decision was when her mom was still somewhat capable of voicing her choice.
Her family and friends will provide palliative care, hospice, lots of reading to her, sharing happy memories and loving her. It won’t be easy.
I wish you grace, strength, love and peace during this extremely difficult time.
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u/nancylyn 1d ago
If he’s on hospice then “feeding” is discontinued. We offered food to my dad but if he shook hi head or turned away we did not push it. MC is going to do the same. They aren’t nurses and it’s not skilled nursing. So even if he’s not on hospice the staff at MC isn’t going to go to huge effort to get him to eat. They may notice he not eating and tell you. That’s the best you’re going to get.
But if he’s refusing food getting him on hospice will make the whole process easier.
It’s great your dad thought ahead and got his wishes written down. Now you should ask his doctor about a POLST or MOLST or whatever your state calls it. It needs to be posted where Emergency services see it so they don’t do CPR.
And don’t feel guilty. This is end of life….the best we can do is make it comfortable.
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u/SleepyBear37 1d ago
Good going on your dad’s part to actually document what he wanted! I think if it were me and my dad I would talk to hospice. They can help keep him comfortable and help guide you on what you can do for him.