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.