Tuesday, September 08, 2009

Dying from Parkinson's

Dying from Parkinson's is not linear or mechanical. It has multiple pathways.

  • The mind can go to the point where the body becomes deregulated.
  • The body can go to the point where one is no longer strong enough to breathe and suffocates.
  • Other body systems can weaken and fail, together or in sequence.
  • Some people just sleep longer and longer and finally do not wake up.
  • Some lose the desire to eat and eventually just fade away from not eating.
All of these pathways are active at the same time and act at different rates for different people, sometimes getting worse and sometimes getting better. I've known a number of people with the disease, each has had different pathways take them to the end. A friend's father, who died recently had a particularly difficult death.

As for my dad, he expected to die a couple of years ago, wanted everyone near him and a blessing to make the transition easier (he was in constant pain, serious delusions and completely bed bound). He recovered and started walking again instead of dying.

But, it was temporary, it looks like he is now in the final decline. He has lost his appetite and begun to waste. That is probably the gentle way. He still recognizes everyone, he is at peace with death now. Hospice comes daily, but there is no concrete time line.

I visit from time to time, Win sits with him on Wednesdays so my mom can spend the morning at the temple, I come by on Saturdays to get him out of the bath (my mom isn't strong enough to get him out) and when he slips and falls to the floor (she isn't strong enough to lift him). He hasn't walked for some time, but he does transition to and from a wheel chair with the tools they gave my mom to make that possible. I suspect that is likely to end soon as he is just not strong enough to help at all in the transitions.

It isn't faster than expected, but it comes and goes irregularly. My mom has lived her life by structure, so this really does not fit, but then life never does.

I've got posts written, will get them up, just wanted to respond to some e-mails here. That's the news from Lake Woebegone, so to speak.


Karen D. Austin said...

Thank you for taking the time to post this. You are all doing a good job as an extended family, rallying around him. My VT companion in this ward is caring for her husband who is in early stages of Parkinson's. I'm glad to have some information about the possible paths through this.

Yes, the "structure" for late life for most of us is unpredictable. It a challenge for all involved. A large reason for my moving into gerontology next year is to assuage my fears of the great unknown in my own late life. I am sure that I will still be caught unprepared.

In my current book club when it was my turn (which was March), we read The Death of Ivan Ilych which is really about his whole life with a focus on examining the meaning of life when confronted with death. You've probably read it. It's a work of literature I think about a nearly every day (Hamlet, Madam Bovary, Epic of Gilgamesh and Pride & Prejudice being the others).

Anyway, my best to you, Win, your dad, and your mom.

barbskev said...

nks for what you've written, especially about how the person will die.

I am 57 and have given up work to care for my dad. He gets worse allthe toime but sometimes seems to improve a little.He was hugely better when I took over as live-in carer. The deal was I'd have time off every 4 - 6 weeks, but he's forgotten the bargain and now refuses to go in for respite. I am worried about how long I will be enslaved,
He can't walk or barely stand but doesn't look lke dying anytime soon.It's OK day to day but for how much longer?
And will I cope when he goes????

Anonymous said...

At late life for most of us is unpredictable. It a challenge for all involved. A large reason for my moving into gerontology next year is to assuage my fears of the great unknown in my own late life of parkinson illness

James said...

My dad also has a parkinsons disease, really bad. I hope god will help us

Anonymous said...

My Daddy died today from Parkinson's and endless UTI's. The not eating and sleeping longer, and finally not waking up today is exactly what happened. I wish I had found this before, but am comforted his lungs didn't stop working & stayed clear. Thanks for a helpful article.