How Caregiving Ends.

I’m sitting in Dad’s room, watching him sleep, as I have so often. The twitching from his Parkinson’s has gotten worse and his body is in almost-constant motion. It looks uncomfortable. The room is small, just a bed and his recliner, so seating is limited. I’m currently perched on his wheelchair, which is fine – I’m used to wheelchairs. I’m eating my gluten-free pretzels, listening to the classical music on his radio, pondering the events of the last few weeks.

My sister and I went to talk to his doctor at the beginning of the week so she could get some questions answered, including finding out what he will ultimately die of. Most dementia patients don’t die of the actual dementia; they die of infections, or pneumonia from aspirated food and water, or heart attacks. The doctor’s response is pretty straightforward; he’s outlived his lifespan and is wearing down. It will happen to all of us; we are all clockworks, after all, and Dad has finally run down.

We also wanted the doctor to refer us for hospice care, which he did, and I’m looking forward to working with Providence of Seattle, where I have volunteered. I’ve worked with two hospice organizations, visited many patients, held hands, and counseled families. I know how it all works, but I can tell you categorically, it looks very different from the other side. As a volunteer, you’re insulated somewhat from the experience; as a family member, the experience is happening to you.

I’ll be happy for their help and expertise but can’t help noticing how close to the end it makes me feel. Hospice essentially means you’re coming to the finale. When I stopped in a few days ago and watched his caregivers feed him – and they were kind and patient – it seemed like the process was really stressing him out. Now I’m trying to decide whether to tell them not to give him anymore food – a very final directive. I’m hoping that hospice will help me make that decision. I’m really hoping it isn’t a long, drawn-out ending. This is the end of caregiving; how it always ends.

I can’t help feeling that I don’t know what the f*#& I am doing, despite my experience with death – both personal and professional. I still feel like I’m too young for all of this, but you have to work with what you’re given. There isn’t much I don’t know about Lewy Body at this point, but everyone’s ending is different. As I said before, I’ve helped group members with the deaths of loved ones, but I’ve never personally had to make these kind of decisions, and I’m learning on the job what to look for and what to do. It’s been so long since my mom died that I can’t rely on old memories to help me. I am fortunate to have amazing friends to help and listen to me, and Greg and his caregivers to take care of Dad.

As I sit here on the wheelchair, watching him twitch and grimace in his sleep, thinking back over the last thirteen years (thirteen!), I think of all the events and choices that have led me to this place. I find myself reflecting on Dad’s life – and death – and mine. In many ways, I feel like Dad didn’t use his life to the fullest, and it has always spurred me on to do things differently. He did what men of his generation did: went to school, got married, bought a house (or, in his case built a house), had a family, got a job and supported that family, went to Church, did some travel, etc. But after my mom died and he retired, he retreated into his home and himself.

We were always trying to encourage him to travel, buy a Corvette, employ his amazing skills to help Habitat for Humanity or some other charity, teach a class, or do something else. Just do something. But he didn’t want to, and gradually his depression and isolation crept in, invaded his mind and body, sparked the dementia, and began to erase him. And here he is, after thirteen years of increasing illness and inactivity – in bed. Sometimes, it breaks my heart.

I’ve wasted plenty of time myself, been inactive, made silly choices – don’t get me wrong. But I also feel like I’ve made a difference in the world in a very, very small way, helped others, put myself out there, been a good friend, and just tried hard to use the life I’ve been given. When my clockworks run down, I don’t want them to be rusty with disuse – I want my parts to be worn out with overuse. I wish that Dad’s could be, too. Maybe in the next life, once he lets go of this one, he’ll get another chance: I truly hope it works that way.

I hope he goes soon, peacefully, quietly, without aspirating anything or having to stress or struggle. He’s been through a lot and he deserves an untroubled end. The photo was taken at Mount Rainier during one of the summers I lived with him and we had adventures. He had become a different person; jokey, affectionate, and more uninhibited. As I’m sitting here in his wheelchair, watching, I remember those times with more happiness than I think I felt at the time, and gratitude, for the time we got together.


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