He's forgetting how to eat

White Crane · June 3

and even what food is…at least that is how it seems. I eat lunch with him on Sundays at the MC. For the last two weeks, when they bring his tray he just sits there and looks at it until I tell him to eat it. Then he looks at me and asks what he is supposed to do. This Sunday, I picked up his fork and put a piece of chicken on it and handed it to him. He put it in his mouth and said "Now what?" I had to tell him to chew it and swallow it. This went on the entire lunch time with me putting food on his fork or spoon and handing it to him. After a while he asked if that was enough and what should he do now. It breaks my heart and I'm worried about what happens when he no longer knows how to swallow.

Brenda

charley0419 · June 3

I read different reactions from this unreal illness and it scares the hell out of me, you never know what’s next. Your experience is heartbreaking and only wish the best for you, who knows what’s ahead I wait every morning befor wife gets up wondering what’s ahead today. Hate this freaking illness so unfair

Gator1976 · June 3

We are in stage 4-5 and am experiencing the same thing. Last night while preparing our dinner, I put the oven baked chicken breast on a plastic cutting board on the gas stove. She proceeded to turn on the burner thinking she was turning off the oven. The board partially melted before I realized what she did. She’s been the cook, not me. It’s been her kitchen not mine. She over cooked the Mac and cheese, it turned to mush, un edible.

midge333 · June 3

@Gator1976 : Sounds like your DW should be done cooking. It is no longer safe.

midge333 · June 3

@White Crane : Unfortunately your DH will likely need significant help with feeding from here on out. At some point, the issue of hand feeding will come up. I really struggle with this as it becomes life-prolonging similar to tube feeding. I am contemplating adding "no hand feeding" to my own advanced directive. I do not think I would allow my DW to be hand fed but fortunately it has not come up yet.

Iris L. · June 3

When chewing becomes problematic, foods should be pureed. Shakes and nutritional drinks like Boost should be offered. Be alert for aspiration.

Iris

trottingalong · June 3

when that happened to my MIL, my FIL puréed all foods. When you reach that point it becomes a choking hazard like Iris stated.

GothicGremlin · June 3

@White Crane I'm so sorry you're where you are. I remember this stage very well with my sister. It was almost exactly the same, right down to the "now what?" We were already at the hand feeding stage by then. So, like Iris said, we puréed her foods. We had mixed results, to be honest. What worked best for us was puréed spaghetti sauce (with puréed meatballs) that I had made at home, and that Peggy's friend M then puréed. It was very familiar comfort food, to be sure. We also supplemented with Boost and Ensure. When puréed foods no longer worked, we relied on Boost and Ensure. Drinking through straws somewhat helped.

I wish I had better news.

jfkoc · June 3

Please, no straws…they lead to choking.

GothicGremlin · June 3

Good to know, although we were so careful.

White Crane · June 3

thank you all for your comments and support. Iris, I will talk to Mc about puréeing his food. I think you’re right. It seems like this happened suddenly but I guess that’s how this disease works sometimes.

SDianeL · June 4

You are correct, he has forgotten how to eat and what food is. Ask for a Speech Therapist to do a swallow Test. There is Mechanical soft diet and then puréed diet. The Therapist can determine which is best. He needs to be hand fed from here on and they need to remind him to swallow. So sorry. 💜

Vitruvius · June 5

My DW has needed to be hand feed puréed foods for well over a year. I did some googling about the ethics of hand feeding and found this article in the “Journal of Pain and Symptom Management”:

Ethical Issues in Palliative Care
To Feed or Not to Feed? A Case Report and Ethical Analysis of
Withholding Food and Drink in a Patient With Advanced Dementia

The article can be found here:

https://www.jpsmjournal.com/article/S0885-3924%2815%2900404-2/pdf

Not surprisingly it says the issue is far from simple and that advanced directives to not hand feed are likely invalid.

midge333 · June 5

@Vitruvius : The issue is not simple. I think not allowing an advanced directive to stipulate no hand feeding would be a violation of patient autonomy which is one of the four pillars of medical ethics (autonomy, beneficience, non-maleficience, and justice). I am considering adding it to my advanced directive with the hope that I will never need it but if I do, my kids can fight for my right to autonomy.

Vitruvius · June 5

midge333: In my own discussion with my DW's hospice and her MCF we have agreed that should she ever decline to accept food she should in no way be "forced" or aggressively given food. Her refusal, or lack of acceptance is equivalent to her, or her body, making a choice, even considering her extremely minimal level of consciousness. The problem is that she actively opens her mouth for food when you tap her lip with a spoon (she hasn't opened her eyes during feeding for many months). This is understandably taken as her desire to be fed. The question is whether she is doing this as merely a primitive instinct, as a newborn baby will do within hours of birth. The hospice has issued an order to the MCF however that her feeding time be limited to 20 minutes. This sounds like a long time, but she actually feeds very slowly. The idea is that she not be over fed due to this instinct with more food than she is able to digest, thereby causing gastrointestinal problems. She is also to be given food for comfort (like ice cream which she readily accepts) not nutrition if she appears to dislike the taste. Feeding should also stop on first refusal, no waiting awhile and trying a few minutes later.

Anyway I'll stop hijacking this thread and wish you the best with your advanced directive, which by the way I completely agree with you on, I just don't know that the others involved will agree.

Edit: I should also stress here that were it not for her accepting food when her lip is tapped, you would otherwise think she was comatose. She has not opened her eyes, uttered a word, or made any independent movement in months, so it's not a case that she just can't feed herself.

upstateAnn · June 5

I have decided no feeding when the time comes…

midge333 · June 5

@Vitruvius : You have not hijacked the thread. I think this is an important discussion because nearly all of us will go down this path with our loved ones with dementia. I appreciate your perspective and the article you shared. I thought I would be able to decide for my wife but given the info in the article you posted, I may be forced to allow the MCF to hand feed her because her advanced directive does not address hand feeding.

@upstateAnn : Does your loved one have an advanced directive stating that hand feeding will not be done?

jehjeh · June 5

I guess I don’t understand why one would not want their loved one to be hand fed. I have been with 3 family members in the months, weeks and moments before they died. Each of them reached a point where they would shake their head or refuse to open their mouth, indicating they did not wish to eat. We understood and respected their wishes. But if they were hand fed and continued to accept food why would food not be offered? I hate the thought that my LO is hungry, finds pleasure in eating but no one is facilitating feeding. Am I missing something?

midge333 · June 5

I can only speak for myself. If I am in the terminal stages of dementia (late 6 and 7) and I can no longer feed myself, then I would not want to be hand fed. Nutrition and hydration at that stage only prolongs suffering. @jehjeh, I understand your point and when deciding for others, I think one should err on the side of providing nutrition and hydration unless the patient has an advanced directive stating no hand feeding. Obviously, if the patient is cognitively intact and they ask for food and liquid, it should be provided.

Timmyd · June 6

I appreciate that this discussion is happening. This is a very delicate subject. I admire the sensitivity people are showing when discussing this topic. It is one of the reasons I get so much value from this community.

My experience thus far with difficult topics is that my attitude and perspective I have on the subject in advance of the situation, is often different than how I feel when I am in the situation.

I am grateful that I am not having to face these circumstances right now.

GothicGremlin · June 6

@Vitruvius - this is essentially what I went through with my sister. 20 minutes was not long at all - for us, 20 minutes meant we were only just getting started! It would take Peggy an hour (sometimes more) to eat the amount of food that she wanted. And we're talking about half of what was on the plate. Peggy's memory care facility and hospice also advised not to force her into eating, so we didn't.

@midge333 - this was one of the hardest stages … trying to figure out what was the best thing to do, and how best to honor Peggy's wishes.

When she was first diagnosed I knew I had to get my legal ducks in a row, but before I had us fill out forms and notarize them, I went over everything with her - especially the advanced directive. She was quite capable of making her own decisions then and I told her I'd respect whatever decision she made. She wanted to be fed until the end, although she drew the line at feeding tubes. She didn't want that. I don't remember if there was a provision in the advanced directive about hand feeding. I'm guessing there wasn't because I didn't realize hand feeding would be a necessary thing until later on. I think the language on the form was more general than that, but I'd have to go pull the form out of my files to make sure.

Thing is, the stage 4 Peggy who told me that she wanted to be fed until the end was not the Peggy I took care of in late stage 6 and stage 7. What would stage 7 Peggy want? Did she want it to be over? To this day I don't know the answer to that question.

I'm like you, if I were late stage 6 or stage 7 I wouldn't want any food at all. Just let me go. But Peggy wasn't like that. She was always optimistic and always hopeful. At least in stage 4 she wanted everything to be done that could be done, as outlined in the advanced directive. So that's what I did, and I did that until the end. But, like I said, I don't really know what stage 7 Peggy wanted - and she couldn't tell me.

I guess this is my long-winded way of saying that in Peggy's case providing nutrition was what she wanted back in stage 4, and so that's what I did (as uncomfortable as I was doing it). I know she was suffering, but I didn't feel like it was my place to override her decision.

upstateAnn · June 6

My husband and I have very detailed MOLTs. I shall add the right to refuse food to both of ours. Thank you. I have noticed my DH eats less and less. I never insist he eat more.

Vitruvius · June 6

Let me go back to White Crane's initial issue, that her DH was forgetting how to eat. This was the case with my DW. First let me say that well before dementia's onset my DW made it clear she did not want to be sustained in a virtually brain dead state, prompted by the case of an elderly relative after a stroke.

Now back to the beginning of the need to hand feed my DW. At first she was perfectly capable of physically manipulating her silverware to feed herself, she just could no longer understand the process. My DW would scoop up food from her plate and dump it on the tablecloth. At first she could be coaxed and guided to get the food to her mouth, but this soon faded, she needed to have someone handle the silverware to get the food to her mouth.

At this point, she clearly wanted food she just couldn't see how the process worked. She could still hold a very simple conversation and often told me she loved me, it was inconceivable to me to deny her food at this point. Dementia marched on and she is now in Stage 7f, she is considered marginally conscious, she shows no signs of connection to the outside world, maybe something is going on in there, but there is no sign of that. They tell me a person's feeding reflex is the last thing to go, it is a most primitive reflex that can go on long after the more "advanced" parts of the brain have withered away. The Fisher document notes: "Persons can survive in this final 7f substage indefinitely." This is definitely not what my DW would have wanted.

But because the process is an continuous decline, there is no definitive point that you can say, "now is the time my DW would have wanted for hand feeding to stop." Her primitive brain is able to initiate the feeding reflex and even if I said to stop, neither the MCF nor hospice would agree to that. And truthfully I am conflicted as well, between knowing that she originally didn't want to be like this and thinking that the remnants of her personality might be fighting to live on.

Many will be spared this dilemma, many PWD die of other causes before dementia causes their brain to completely fail. But for those that face this issue, there are no easy answers. In the end, we much each chart the path we feel is most compassionate.

midge333 · June 6

One of the problems with advanced directives is that you can't foresee all the possible things that can happen to you. Nine years ago (at initial dementia diagnosis) when we revised our legal documents, we had no idea that end-stage dementia patients often require hand-feeding. I am certain that my DW would have added a clause specifying no hand-feeding to her advanced directive if she knew it was a likely possibility. I did not understand the issue until my DW entered a MCF and I saw it being done. Now it is too late to change her documents…

midge333 · June 6

I also want to thank @Vitruvius and @GothicGremlin for sharing their experiences with the rest of us. This is a tough topic…

Gator1976 · 11:51AM

My LO is in stage 4 and some 5. I just can’t imagine this. Her mother had ALZ and never got here.Her brain died before this.

White Crane · 7:07PM

I want to update ayou. I talked to the DON at MC about the situation an asked if he should be on pureed food. She said no, pureed food is the last resort and once on pureed food there is no place else to go. She is going to have him evaluated by their speech therapist to check his swallowing. I also talked to the aide in MC and she said she had noticed too that he sometimes seems to forget how to eat but not at every meal. She also said that when he doesn't eat, she offers him a sandwich in the afternoon and he will usually eat it. So that is where we're at. If they need to feed him or help him eat, that is alright with me. And I will help him when I am there. He still plays rummy and loves music and singing. This disease is so sad and terrible.

I also want to comment on withholding nutrition and hydration. I know that toward the end of life, people naturally start refusing food and it should not be forced on them. As long as they accept food though, I believe they should be fed. As far as hydration, dehydration is a miserable and painful way to die. I would never withhold water or other fluids from DH unless he refused it. Last December in MC, one of the residents steadfastly refused to eat and finally to even drink. He died shortly thereafter. It was sad to watch but I know he was in the last stages of the disease and his body was shutting down.

He's forgetting how to eat

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