When Lewy Bodies romp: the power of microcritters in your brain

• Three weeks ago Casper and I talked about the potential for hospice to come into our lives.
• Two weeks ago I signed the paperwork to start hospice services for her because she couldn't follow a conversation that day.
• Ten days ago she tried to send the Home Health Aide away saying she didn't need help with her shower, thank you very much!
• Seven days ago she welcomed the aide and said it felt good to be taken care of (never mind that I'd tried and she would not cooperate for me. Kind of like small kids- always acting nicer for someone else's parents...). She even liked the lotion and massage!!
• Up to four days ago she would not allow a shower chair in the shower. She was adamant that she would never use it, and if she did only if she decided it and not for a long time.
• Today Casper could not get up on her own. She could not walk even with a walker without total help (we call it "max assist").
• Up to a few days ago she used pain meds sparingly. The last few days- total max on all of them. The tremors have been so severe she can barely manage it.
• Yesterday she went downstairs to watch her brother Jay working on vases I found on Pinterest for the wedding (I look at Pinterest- Jay makes it happen. The lesbian sister in law and gay brother in law make a team- and his are prettier than Pinterest!) Casper was downstairs for less than three minutes when the shaking got so bad she had to be helped back upstairs and spent the rest of the day in bed.
• Today she needed help with everything including holding a milkshake, and the choking so common in Parkinson's was back for a while.
• This morning she agreed to use the walker for the wedding, and to have the wheelchair there in case it was needed. Tonight the walker hasn't left her side.
• Sunday she slept all day after sleeping an hour at a time Saturday night. I was not allowed to leave her side.
• Sunday night she awakened in a weird fugue and was convinced she was alone all day and the bed Jill was out carousing all day. (I really hope my evil twin is having fun- I am paying a high price for her stupid behavior!) Then she slept again, only to awaken convinced I had starved her all day (we did eat dinner) and she ate half a cake with her fingers out of a box.
• Today after her much assisted bath our sheets were changed- thank you Shaneen!- and the chocolate is finally gone.
• And today she used the shower chair. Without argument. She was unable to stand, unable to sit without falling over.

 

"Why the big sudden change?" It's a question I am getting repeatedly. Maybe it's not really that bad. (It is). Maybe you are seeing things through a bad lens (Jay said he can see the change, and it hurts him to know his sister is failing so quickly. He hates to tell me when she's disoriented all day).  Maybe we need to "pray harder" and light a candle and God will make it all go away. (Much as I like to think God is compassionate and loving, I am also rational and know a disease process is what it is and will do what it it programmed to do. I may not like it, but it's not going to stop for a candle.) Maybe there is a medicine or tree bark or special xr-ay that will make it all go away (the Feds have shut down the NIH this week because of Congress. Even if there were something in the pipeline, which there isn't, research is closed for the season. Dick Cheney got his newest heart and anti-rejection drugs. Lewy Bodies are an orphan group. They don't make money for pharmaceuticals).

 

The answer is that Lewy Body Dementia with Parkinson's is an especially ugly little disease that acts even meaner when it takes over the brain of someone under the age of 65. It takes a long time to diagnose for a whole lot of reasons, all of which involve it looking like other issues. It can't be truly diagnosed until autopsy (isn't that a nice thought?). And it's more common in men than women. Maybe Casper being so butch played a role? (I'm kidding. Don't take that seriously). When Lewy bodies start romping around in your brain you cannot stop them; you cannot slow them; and you cannot tell where they are going next. One day, or hour, might be like old times. Eerily like old times. As Casper has gotten so much worse her smile has returned at times. I haven't seen it in two years. Her romantic side pops up once in a while. No- pull your head out of the gutter. She calls with sweet messages and can figure out the phone. She wants to cuddle. Then the Lewies come back, like last night, and a sweet cuddle turns into a punch in the face because the uncontrollable jerks return with a vengeance. I imagine they are like Tribbles (Any old Trekkies?). They reproduce. They take over. They pretend to be nice. Then they strike. Tribbles are no longer my friend.

 

Neither are the Lewies.

 

Next week her family arrives from North Carolina. My sister from Chicago. I have tried to get them ready for who they might see. It might be Casper. It might be a shell. She's trying hard to be ready. I'm trying hard to make sure she knows they can visit her while she's in bed. And I am telling those stupid Lewies they need to give us a break for a week. Or even a day.

 

I am guessing they are, like Tribbles, laughing.