So I’ve been here, living and caring for Mom one year, two months, and eight days. But who’s counting.
Life has been interesting and frustrating. I have spent a considerable amount of time playing mindless games on my phone and ipad. I haven’t been able to concentrate enough to read or write. I haven’t finished reading a single book clear through. And my writing feels pointless and overly repetitive.
So why am I trying again?
This week we began working with hospice. The team is absolutely tremendous, compassionate, encouraging, and gentle with Mom. I don’t feel quite as alone in this process.
The one word I have always associated with hospice and end of life is intentionality. Serious conversations and light-hearted remembering. Laughter and tears. And a clear willingness not to sweep things under the carpet. Finally, naming the elephant in the room. Giving up control. Relaxing a little.
All of those things are happening. And I’m among other things, I’m going to include some of those reflections here.
This morning Mom had an appointment for her pacemaker check. We weren’t sure if we needed to keep the appointment. We did the check and we have a follow-up with the cardiologist next week. We’re going to talk to him about whether we need to keep doing this. And ask him the question our hospice nurse asked: what about shutting the pacemaker off?
After the pacemaker check we went to LabCorp for blood work. This was for the cardiologist, too. They were running behind. Several people were waiting. Mom nearly fell asleep. I’m getting better at maneuvering the chair and the portable but cumbersome O2 tank.
After lunch Mom took a long and hard nap in her chair. She always looks so uncomfortable. She woke up hard. After a trip to the bathroom, when she was settled back in her chair, I checked on her. She was troubled by how long and hard she had slept. She looked at me and asked, “Is this how it’s going to be?”
I told her I don’t know, but we’re not going to go back to how things were. We talked for a bit about how things were changing and how hard it is for her to relinquish control. Her comfort has always been in her rigid schedule. On a MBTI she bleeds J. Her calendars have been the constant proof of her adherence to schedule and routine.
Today she told me to put her calendar away, she just didn’t feel like writing in it any more. So I did.
I guess I’m in charge of the schedule now.