BARRY’S JOURNEY No. 26
Peace and comfort in hospice care
A few weeks ago, I attended a care conference with a social worker and a nurse at Barry’s care center. Everyone was concerned about his weight loss, falling and food pocketing. Barry had been going for hours without swallowing his food or even his own spit. It has been unnerving to come for a visit and find his cheeks full of food or a mouth over-flowing with spit when he tries to talk. He also had bumps and bruises all over his body from crashing down to the floor when trying to sit without looking to see if a chair was in place behind him.
At the care conference, they decided to keep cutting down on his medications to see if it is the medications or his dementia that is causing these behaviors. The social worker also told me that Barry now met all the criteria for hospice. This took me a bit by surprise even though it has been in my thoughts for a while now. Is he soon to die? Is that what they were telling me? I asked the nurse if I should cancel an upcoming speaking trip. She kind of laughed at me and said he’ll be fine. This was not the time to panic!
More eyes on Barry
Next, I met with the hospice staff. Barry was accepted into hospice care because of his weight loss and falling problem. I learned at the meeting that Barry wasn’t necessarily soon to die; in fact, he could live for years in hospice care. For Barry, hospice means he is seen not only by his care center staff but also by hospice health care professionals. More eyes will be keeping track of his condition and comfort. In addition to nursing care, the hospice team provides dog therapy and a chaplain who comes to sit and talk with Barry.I was there when the chaplain came the first time. Barry seemed to respond well to him.
Something Barry kept pretty quiet about himself, before dementia took over, was that he read The Daily Word every day. I am not sure when and where that started, but I think it was something his father did each day when he was a regular at AA meetings before he died. I think it helped his father stay sober. When the chaplain read a devotional piece aloud, Barry really seemed to like it. It made me sorry I had canceled his Daily Word subscription.
My feelings are my own
After reading to Barry, the chaplain asked me how I was doing. My instinct at times like this is to take flight. I do not like any attention on my feelings. I said I was fine and quickly changed the subject back to Barry. My good friend Talla recently told me it is a bad idea to compartmentalize feelings in my brain and not let them out. I know that I do this, but I would be paralyzed if I let them out right now. So the compartment where I put all the emotions about Barry’s dementia is closed and locked tight for now.
This hospice thing is pretty good for us. The staff helped me make decisions about the end of life — things like using feeding tubes and what do you do if your loved one gets, say, strep throat or some other illness. These seem like easy decisions to make when your loved one is terminally ill, but it is hard. I had to keep reminding myself that Barry would want this! But that voice inside my head asks — would he really? Are these his wishes? Frankly, I am not sure we ever talked about it before he got dementia. The hospice people also asked me if I had thought about his funeral, so now that is what I am doing. I also have an order that he IS NOT TO BE ADMITTED INTO THE HOSPITAL! Yeah. No more late nights at that dopey hospital he is always being sent to. I know that this one is certainly the right decision!
A new, more relaxed phase
I have to report that Barry is doing better since he has been off his meds. What we are seeing now is frontotemporal dementia (FTD) at work — not the effects of some narcotic he was taking. He seems to smile more, although what he says most of the time is either a repeat of what other people say or stuff that makes no sense. On the other hand, he can be rather funny at times. Today, he told me that there “are some weird people in this place.” He is in bed most of the time doing this weird leg lift motion until I come to walk him around the floor. He is thin but, man, his stomach is rock hard now from those leg lifts.
So this is how things are now. We are in a new, more relaxed phase, and I have some pretty tough stuff figured out. Maybe it’s time for me to open that compartment door in my brain — maybe just a little bit!
Nancy, I didn’t see any comments on this post yet, so I just wanted to let you know that I hear your story and am following along. I’m glad to read that Barry is in a place where he’s safe and getting the kind of care that lessens the stress on both of you.
Nice post. Hospice is the right decision. They provide such great comfort care, and keep family informed about how he is doing. Do they have a music therapist? My Dad really liked when the person came in and played the piano for him. I enjoyed your discussion with Esme Murphy on WCCO radio. Hopefully, other people benefited from your comments about what to watch for. Please let me know if I can help you with anything. Kitten
Hi, Nancy. Someone mentioned the idea of a music therapist. I’ve heard that before, too, from a musician friend of Ed’s. In the case of Barry–an old 60s rock guy like me–might he respond to Hendrix, Cream, the Allman Brothers, etc.?