A week or so ago I read a blog from a member of the Parkinson's support group we sometimes attend. It talked about how much PD turns your world upside down when you are not ready for such a life event. I appreciated the author's candid approach, and then thought about it again as this week has stretched into one of the longest yet in the crazy adventure with this lousy disease. I try to get us to the support group more often, but Casper is still trying not to accept that the world has been turned upside down by PD. She would prefer some unknown disease that does not have the outcome this one does. As a matter of fact, so would I. Especially this week.
Parkinson's can mosey slowly down a path that is not well defined, it can arrest itself mid-stream, it can respond to meds. It can never ever touch dementia. It can, and does, allow folks to keep working in their chosen career. Or it can do what Casper's has done- it can rock and roll into your life, make you quit work in the prime of your career, stop your retirement savings plans, and create havoc in your medical costs and the plans we all make so carefully as we creep into our fifties and beyond. PD likes to strike in the middle of the good years- the times when you have finally got the career where you want it, where extra education is an option, vacations are finally not camping, and kids are getting ready to launch. Just as you think there is a bright light waiting at the end of that tunnel, you find out it is a different light, a different tunnel, and that you want to dig in your heels and not go anywhere near that light.
This is our youngest child's last full week of high school. I've tried to be as available as possible to do school pick ups, take care of extras so she can enjoy the week, and to not let the PD stuff invade. This week was on Linda's bucket list, and it really matters to me that it goes right for Chloe. I know she's missing Mama Linda, and that there are gaps I need to fill. And then in the middle of all that, we are facing a new and more terrible side of PD: Rapid Eye Movement Sleep Disorder, and Rapid Eye Movement Behavioral Sleep Disorder. Such a big description. I'm having trouble typing it as sleepy as I am. What does it mean? Those who are lucky enough to be in the tiny fraction of PD patients with Lewy Body Dementia may also be in a tinier fraction of those with REM disorders. Think of 5% of 5%. That, of course, would be us. Each day, and night, is just a little more crazy, and Casper's eyes flutter, eyebrows raise wildly, eyes open at half mast while her eyes flutter back into her skull and come back down, twisting from side to side. Think of Mr. Toad's Wild Ride all displayed by the eyes. Then add movement. Not coordinated- wild, out of control, grasping the sheets, smacking pillows, hitting, trying to get up while unsteady and asleep. And think of that happening in five minute bursts that occur maybe every fifteen minutes, accompanied by vivid dreams that seem real, sleep talking, sleep walking, and seeing people who used to be here but may have died long ago.
Then try to explain all that without sounding absolutely nuts, and to admit your mom was with you all night- when you know she wasn't. How do you do that? How do you explain it? Fortunately, I am not the wigging out type- most of the time. I am the type who goes online and researches what is occurring. I was watching videos of this as it was happening here today, so I could be sure of what I was seeing. I read what the research said to do, located the meds, and woke Casper up enough to get them into her. Even with all of that, the dreams and sleep continued. It took until 9PM for her to come to enough to talk about it and to do some education about it. That's when she said she could not do this in the long term if this was how it was going to be. "I can't do it. I just can't."
I get it. I can barely do this some days, and I'm not the one jumping, twitching, and sore from all of it. I'm not the one who had to quit a career I worked so hard for to stay home and feel useless all day. I'm not the one having dreams that I know make no sense, but that took so much energy to deal with in my sleep and seemed so real even as I woke up. I can't imagine how hard it is. Casper rarely knows what day it is, what date it is, or even what year it is. She can't tell if she slept an hour or two days. Yesterday she slept through dinner. Today she thought it was day when it was night. Not even darkness is a cue any longer. In that space, who would want to keep going knowing that was what was waiting? We've shared hospice patients with the diagnosis "paralysis agitans." Fancy medspeak for PD, end stage. Those are the patients who are vegetative. They have seizures, they are fed a pureed diet, they exist in padded beds in diapers. Those with loving care last a long, long time. All of us have said, quietly, to our other staff, not to ever let our lives come to that. Casper can't remember many hospice patients, but those she can. One in particular.
Saturday we see one of her doctors. We will be addressing this new adventure, and will will try to get the right meds again to calm this down. I can hope. But then again, this is Casper. Our doctor keeps saying "If it were simple, it wouldn't be Casper." I will keep trying to teach her. She does not want to hear it, and she can't retain information anyway. But she needs to understand if she can. And we need to keep hope- because giving up and giving in is not an option.
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