Why is this so very hard?

Vitruvius

This was hard to write and undoubtedly hard to read, so if you're not up for it go back and pick another thread. 

For context my DW is late stage 7e and 73 years old. She very rarely opens her eyes and even when she is not quite asleep, she looks like she is. 

My DW's usual aide was upset this morning. While moving her around my DW apparently said either "kill me" or "killing me". The aide was so flustered she became unsure which. My DW has not uttered a discernible word in months, only occasionally responding to someone talking to her by a "hmm-mmm". The aide hopes it was the later, as that would probably meant the movement hurt her, although the aide said DW did not exhibit any of the usual signs of distress like groaning or grimacing. The aide speaks fluent English but notes it is not her native language. So maybe DW tried to say something else, or was just vocalizing without meaning.

I don't know what this really means of course, but I do know she made it clear starting 50 years ago that she didn't want to be sustained in a catatonic state. It pains me deeply but my pain should not dictate her care. I can't help thinking about why it has to be so hard for someone with dementia to die. Yet we have no choice, the act of dying is too fraught with moral ambiguities. I have discussed this with the MCF and her hospice. When she is in her semi-sleep state she will still make a feeding response when you tap her lip with a spoon. I am told, true to the retrogressive nature of dementia, that the feeding response is the last thing to go, barring other causes of death. Since she will feed the MCF has no choice but to feed her without a doctor's order to stop. The hospice directed that she not be awakened just to feed, but DW does spend part of the day in a semi-awake and aware state, and although she remains perfectly still with eyes closed and no facial expression, she might give her "hmm-mmm" response to someone talking to her for example. 

I have read several threads recently from spouses who thought something they did or didn't do caused their LO to pass too soon. So part of my reasoning for posting this is to give some thought to the fact it may have allowed them to avoid languishing in a state with very, very little quality of life. 

If you read this far, sorry this has been such a downer. BTW, last week was our 50th wedding anniversary. So much for big family celebration we had talked about for this.

midge333

I never want to be hand fed if I have some form of brain injury or severe dementia. I am thinking about adding it to my advanced directive. If you want them to stop hand feeding her, I think it would be reasonable to ask the doctor to order them to stop. The longer you feed her, the longer she will suffer. I know many will disagree with my suggestion but I think it is the kind and loving thing to do for your DW.

M1

I would have no problem not feeding her if she's not expressing hunger or in distress. I'm interested in this because we're just getting to that point where I waffle about how much to help her. She wants me to feed her, says she's hungry and expresses pleasure at the way things taste. But her ability to actually get things hand to mouth is going down. Plus many times she's eating in bed, and it's very messy if I don't help.

II'mm sorry the agony isn't over yet Vitruvius.

CindyBum

I'm so sorry for this suffering you and your DW are enduring.

My DWs mother could only occasionally speak toward the end of her dementia. When she could get words out, the one thing she kept asking was for was someone to help her die. It was so painful for everyone. Dementia is often so damn brutal right up to the last breath.

xoxo

Jeanne C.

It's clearly 50 years of love.

The feeding thing has come up recently here. My husband is still able to feed himself with cueing. However, his home health aide was actively hand feeding him (after 20 years as a CNA in a nursing home and I think she's just used to getting through meals quickly). After a long talk with hospice staff, I've instructed his aide to stop. Obviously we'll prepare meals, put the food on the utensil, and even put the utensil in his hand. But, while he can, I feel like he needs to dictate his food intake. His body is shutting down and it can't feel good if he's forced to eat beyond his appetite. I hate everything about this (we ofter associate food with love), but I want him comfortable and treated respectfully.

Sending comfort and strength.

SDianeL

So sorry you are going through this with your DW. My DH passed August 12. He was being fed but sometimes couldn’t swallow and they think he aspirated. He was in Memory Care for 7 months. He was not yet on hospice. The head nurse asked if I wanted them to do an X-Ray. She said that if they found anything they must transport to the hospital. I asked what they would do there. She said if it was pneumonia they would treat with antibiotics. If aspiration they would do a deep suction of his lungs. I remember this forum and some posts about palliative care. Since he couldn’t swallow when they returned him to Memory Care the aspiration could happen again. I made the gut wrenching decision to not do the X-Ray or transport him. The memory care facility started hospice protocols and he passed peacefully the next afternoon. Although I miss him so much it hurts I am thankful he’s no longer suffering. We were married 38 years. I truly know how you feel. Praying for your strength and her peaceful passing. 🙏

fmb

https://alzconnected.org/discussion/comment/221747#Comment_221747

I could have written this comment. DH is at exactly the same point. Hospice and I have told the aides to stop hand feeding and let DH call the shots on what and how much he eats. I visited today and was told that he ate only a couple of bites yesterday and refused breakfast today, though he did have two cups of decaf coffee and two cups of juice. He ate about 1/2 of his lunch and a small container of ice cream. I did help load his spoon and reminded him to put it in his mouth, but left it up to him whether or not he did it. He has lost so much weight that he looks absolutely skeletal except for the edema and ascites. The worst part of it is that this could go on for weeks as long as he eats/drinks the minimum he needs to survive.

Beachfan

Vitruvius,

I am so sorry for the situation in which you find yourself with your DW. I am absolutely, positively certain that were it not for an undetected gastrointestinal bleed, DH would still be here, lingering and dying day by day. As much as I love and miss him, and as sudden and unexpected as was his passing, I am eternally grateful that it is all behind me and in retrospect, it was peaceful and calm. Eating/feeding was never an issue. He ate voraciously on Monday evening and on Tuesday, Hospice was engaged and I was instructed to gather the family. He passed on Friday evening.
I don’t know what I would do in your situation, or that of others whose LO’s linger, seemingly with little or no quality of life. I am so thankful this decision and this ending was taken out of my hands; I wish it was this “easy” for all of you.

aquamarine74

My mom is the exact same age and stage as your DW and still being hand fed as the feeding reflex is still there. She is in MC going on two years now and my dad is still committed to feeding her, whereas I struggle, as you do, with whether it’s keeping her alive against her wishes and just prolonging this terrible state of limbo. I think in my dad’s mind it’s the last way he can “help” her and try to feel useful. He’s there feeding her almost every day. No answers—just empathy for your situation.

jsps139_

My Mom didn’t want to eat 2 weeks prior to her passing. Hospice told us this was normal as sometimes they just give up. She would keep her eyes closed all the time, but would say … I’m so tired. My SIL would offer her juice or milk which she occasionally drank. She got weaker and weaker until she peacefully passed. I once read that starving to death is very painful for a person, but she never exhibited any indication that she was in pain … just very very tired and then she took her last breath.

Dio

When DH and I did our Trust, our attorney added an "Advanced Healthcare Directive for Dementia" which specifically addressed what to do in this healthcare situation. DH opted not to be hand-fed or tube-fed. He was still very lucid at the time. Who knows how one may feel when actually in the face of death?! Wishing you a smooth outcome.

Vitruvius

Just to be clear my DW’s advance directive states she is to have “No artificial nutrition, including feeding tubes.” To the MCF and hospice (and me) this means no force feeding.  That’s good, but there is still a gray area. 

The issue is that she cannot feed herself. Her hands are severely contracted, she does not open her eyes. Yet she still readily accepts food offered to her, and after taking one spoonful she will open her mouth just like a baby does ready to accept another spoonful. This is the nature of the feeding response. Is it just a reflex, or is she (somewhat) consciously really wanting food but is unable to tell us? Or is she just taking in food because of a primitive reflex, but doesn’t really want it? She is eating less and less and will clamp her mouth shut after a number of spoonfuls which may indicate she knows when she is hungry and when she’s had enough.

This is our dilemma. I find no easy answer. Is it cruel to stop feeding her if she’s eating and hungry? Or would she want us to stop if she were cognitively aware enough to express that? I am unwilling to make this choice for her without a clearer understanding.

midge333

Given that you will never get a clearer understanding, I guess you need to continue to feed her as long as she takes food. At a minimum, I would make clear to all involved than when she clamps her mouth shut then feeding should stop for that meal.

I guess it comes down to which is more cruel: not feeding her versus prolonging her current existence. I don't think any of us know the answer to that question. At least I do not.

RetiredTeacher

https://alzconnected.org/discussion/70523/why-is-this-so-very-hard

My heart goes out to you. I cried reading your post. We are nit that far along but I feel your pain. I am sending hung prayers for y ou and your wife that she dies not e obedience prolonged or unnecessary pain.

Crkddy

When I read your post, I was really taken back. This is such a difficult issue……my heart goes out to you. My DW is early stage 7, but I am already feeding her by hand. She responds with the feeding reflex. She doesn't ask for food or drink because she can't speak the words. So, at what point do you say that you are keeping someone alive or getting into the Advanced Directive territory. I'm not ready to go there yet, but who's to say when the time is right or best for our loved ones.

Dunno

Vitruvius, ..I hate that you and your LO are going through this, but your sharing does help prepare the rest of us for our future. Thank you.

michiganpat

This is my sister. She is in a nursing facility and cannot feed herself. She will open her mouth like a bird and take whatever is offered and her eyes are closed. I go once a week to feed her along with another resident just like her. The aides put them together and I feed them both. I am torn just like you. I recognize she is just existing. She is in a wheelchair and doesn't communicate for the most part. The other day I was feeding her and a fan was blowing on us off the wall. Out of the blue she said very clearly "I'm cold". I was so surprised. I closed the fan. I don't know what is right or wrong. I don't think she would want to go on like this but I am unable/unwilling to make that decision. I hate this disease.

midge333

https://alzconnected.org/discussion/comment/221847#Comment_221847

I think you are already in advanced directive territory. Who would know your spouse's wishes better than you? If you never had a conversation about end of life issues with your spouse, then you will be moving forward thru murky waters. If your spouse gave you guidance regarding their end of life wishes, then you are obligated to fulfill them.