OUR JOURNEY – Food for thought.

Really hard stuff to think about

I go to a support group for frontal temporal dementia (FTD) care givers and loved ones. There I said it. I GO TO A SUPPORT GROUP!

I am Swedish, and we don’t talk about our feelings. Everything is best left unsaid! It took me a while to finally go to a session, but when I did, I was thankful to be in a room with people on the same journey as I was. Some people have it a lot worse than I do. I look forward to our once-a-month Monday evening at the Methodist church.

Some of us also meet at other times during the month, usually at a place where we can have a beer or a glass of wine. At these get-togethers, we spend a little more time laughing even though some big questions come up. Questions that make your stomach and head hurt like: If your loved one with FTD can’t feed him or herself, should they be fed? This is a question that I have thought about every day since.

At this writing, I am up north to work on book ideas and a memoir that I hope to write about Barry and FTD. I also go out snowshoeing for a few hours each day and during the quiet in the woods, I debate the eating question over and over again with myself. If not for the staff at the care center, Barry would not eat.
Should we continue to feed Barry

Here are the questions I have: Is Barry not eating because he can’t feed himself, because he can’t figure it out or is he not hungry? Has he lost the feeling of hunger? Does he enjoy the food? I do not have an answer for any of these questions. If he has lost the feeling of hunger, what is his body doing? Is it slowly shutting down?

Here is what I go over and over in my mind: If Barry can’t feed himself, should we feed him? When do we say enough is enough because there is no quality of life left. If I knew he enjoyed mealtime or that a piece of pie, a malt or a cold beer gave him pleasure, the decision to continue feeding him would be easy. But what if he isn’t hungry; what if he feels no pleasure from food — should we continue to feed him or should we just make him comfortable?

I need to talk to friends and family. I can’t make this decision on my own.

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17 comments on “OUR JOURNEY – Food for thought.
  1. I am confused about whether you are talking about a feeding tube. You sound as though someone would be hand feeding him and I never saw this happening when my husband had Alzheimers….They said that he could not swallow, but I felt the tests for this were ridiculous for someone with AD….I was and still am sure that he could have swallowed if they had just given him food. But the cookie test is way too complicated for someone to pass if they have memory problems…
    This is a difficult problem for you and whatever you decide, you should not feel guilty. But most of us do. I hope you are seeing a cognitive therapist who can work through this with you.

  2. Jeannie Porter says:

    Nancy, I don’t have any answers for you.I did learn through the death of my son how valuable a “Living Will” of “Health Care Directive” can be when you are faced with this question. Since then I have added more explicit detail to my own. Fritz had made it very clear that he did not want to be maintained on a ventilator and feeding tube, period. When one was introduced while he was on a respirator, we brought out the document, in anguish we suffered, cried, hugged him and called it quits to both the ventilator and proposed feeding and celebrated that we followed his wishes as hard as that was. It was a gift to me. Thinking of you.

  3. Beth-Ann Bloom says:

    When I fed people in the nursing home it always seemed to me that they were too confused to associate all the complicated behaviors required for feeding with the feeling of hunger. Most of the time if I got the food in they ate so I was willing to keep it up even when they spit.

    For me it doesn’t seem reasonable to move past eating-if a person won’t swallow ice cream, beer, or their favorite morsel then a feeding tube or artificial food feels mean. I am sure that whatever decision you reach for Barry will be made out of love just like all your other ones have been.

  4. So hard to know. This is about how you feel: how would you feel if you decided to let him not eat or drink? Really hard to think of relevant questions. But the answers are in your heart. I think of you so often. Blessings. Jane

  5. Nancy, I can’t imagine the difficult questions you face on a daily basis. To me, if he is still able to eat, keep feeding him. Give yourself a break and don’t feel like you have to decide now. If he refuses to eat or can’t swallow, then you will have to decide whether you want him to have a feeding tube.

    This is an interesting article I came across that explains how we used to feed dying patients by hand and when they stopped/could no longer eat, we knew it was time to let them go. Feeding tubes changed that and, at least according to this article, do not prolong life and may increase suffering.


    Feeding by hand, to me, is kind, gentle, and caring and lets the patient know on some level, even if it is not a conscious level, that we love him or her.

    All that being said, I would never presume to tell you what to do with any decision regarding Barry. There really are no “wrong” decisions. You do what you think is best and that’s all any of us can do.

    Keeping you in my prayers and in my heart.

  6. You are the one who knew Barry intimately when he was himself, before the FTD. What would he have said then about his current state? Do you think he would want interventions such as a feeding tube? Or not? Some people want every last thing done to keep them alive as long as possible, others want no interventions like feeding tubes or ventilators. If there is no Health Care Directive then you can only go by past discussions and what you think he would want. It must be so difficult when he can’t give you any clues to his wishes. Thinking of you.

  7. Vito says:

    Nancy, your and Barry’s situation is one of the most difficult anyone could ever face! My love and admiration for your strength and ability to function is boundless! I’m speechless to express myself and my concern for you both in such a situation adequately and makes me sad! My love and hope for resolution for you is beyond words!

  8. Sara O'Brien says:

    Nancy, my heart goes out to you. I cannot comprehend what you and your family are going through. I think of you and your struggles daily, you remain in my thoughts and prayers.

  9. Another thought. Is Barry in a hospice program? I know they vary a great deal from one location to the next, but I think they often help with questions like this. My thoughts and good wishes are with you.

  10. Janet Cruse says:

    I have no advice, Nancy, and can’t even comprehend what you are going through. Sending you caring thoughts and prayers for strength and discernment.

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