It's been a long few days. We had lunch out on Saturday, and Casper was able to enjoy some of it. She didn't understand some of the conversations, and forgot some of the people we talked about, but she loved being with people she used to work with. She needs connections even if she doesn't think she does.
By the time we were winding down Saturday evening things started to go south. Deep South. Like the Equator and dropping. We entered a whole new hemisphere. It started with agitation, which is far worse than it sounds. There needs to be a better word. I'm too tired to think of one, but I am open to suggestions. Agitation , to me, sounds like "I'm grumpy and leave me alone, and if you come near I might get upset." Agitation in real life is more like "I can't make my legs and arms and neck stop moving; my thoughts are all jumbled and noisy and make me feel stupid and crazy; I can't stand people coming and going; I need to be alone- wait stop- I need you next to me; I want to sleep but I can't and my body keeps jumping and now it hurts and I got up because I was confused and just fell down."
That's "agitation." Then morph into REM behavioral sleep disorder and you are off to the races.
The problem is I don't like races. NASCAR is not fun to watch, and having it in my bed next to me is not a spectator sport. I actually like sleeping. Quietly. Building pillow forts is not right when you are nearly fifty. But with RBSD it's not for fun- it's for protection.
Then the dreams and delusions started to really make their play. We had to get up because Casper's parents were coming to visit- at 3am. We had to find a house for them to live in near us. She had to go to work. I got up for church on Sunday and she slept, finally. She has no memories of most of it, and what she does remember is upsetting because she knows it's not real. She's exhausted and sore from all the physical activity all night long. Little known PD (and Lewy Body) factoid- this disease HURTS. Tremoring and jumping and falling- they HURT.
Then it just got more interesting. Sunday evening Casper was sleeping and waking and becoming more unaware of the delusions being unreal. There is no point in telling someone with dementia that their thought process is wrong. It never, ever helps. (Unless she is trying to open a car door on the freeway. Then it's a necessity!) (So are car doors that lock from the driver's side.)
After yet another wild night on Sunday, Monday should have been a quiet day. We changed her meds with the neurologist last week when the delusions started becoming more pronounced. He thought it should make a difference over the weekend. Maybe it did- in a big bad way. There really is no way to know. There aren't labs to tell you how much dopamine is missing in a brain. There is not way to tell what works but trial and error. And history. Except Casper can't remember, and I don't know what she's thinking. Such a pair!
Instead, at work on Monday I got a distressed call- "Come home. The animals are talking too loudly."
Okay, I admit. After I hung up I laughed. But first there was this conversation:
"Are they talking in cat and dog or people?"
"People. But I can't make out what they are saying. I'm trying to understand but I can't"
"Are they talking out loud or in your head?"
"I can't tell. I think both."
I raced home. Casper was shaking like a leaf. She tried to get up but fell backward (another hallmark of PD and Lewy- most people can't tip over backward. We are built with balance to stop that. PD/Lewy patients can't tell when they are going over. Like Weebles, but when they wobble they do fall down.). I caught her, we got her cleaned up a bit, and back to bed. Meds down, choking a bit. She was hungry. Ice cream was the only acceptable answer. I tried a PBJ sandwich, but it wasn't sweet enough. (Dementia changes taste buds- only sweet and salty remain).
The animals kept talking, but settled down. They apparently knew I was home and listening. Fuzzy was confused- why was Casper so irritated with her favorite poodle? My lunch time was over- I needed to be out the door. We found a TV station that would not have violence or animals or older parents. (No reason to provide fodder for delusions). We talked about Hawaii to plant a seed in her memory. I prayed it would work.
At five I called- one more patient to see then I would be home. She was sleepy but okay. At 6:15 when I was heading upstairs she was angry- really angry. Casper is never, ever angry. Ever. She doesn't like that emotion, and she stays away from it at all costs. Except today. Why?
"You were supposed to be home at five."
"I called. Can you remember?"
That look- the "Where have I gone? What happened to me?" look. The anger fades.
"I want to go back to work. I want to matter."
"You do matter. You can't work." Sometimes you just have to have those hard conversations.
"This is that disease. It's doing this."
"Yes it is."
"You are going to get tired of me."
"No, I am going to love you even when you can't remember who I am. Because I know who you are."
We had a moment to talk about legal documents, and a promise not to ever place her. Casper has seen end stage PD and dementia. She's cared for patients whose families left them behind in facilities. I reminded her that she saw me caring for Linda.
"You loved her with all your heart."
Indeed. Just like you.
"You kept her home"
And I will you.
She finally calmed down.
Then later, watching HGTV (safest TV for delusions that I can find.) "We need to buy a house like that for when we move so my parents and your mom can have the first floor and not have stairs for the bedrooms or bathroom."
Here we go again. Except this time she never realized it was a delusion. There was no recognition. None. I texted a nurse friend, who had heard some of it over the phone earlier, heard the confusion as Casper was trying to figure out who I was talking to. Her reply? "I don't know what to say. This is unexpected." To say the least.
Time to go to work. I am not waking her this morning. I'm kind of afraid to see who is in there today. I have to work late at my office. Part of the plan is to make the office more accommodating so I can bring her with me in a safe and comfortable place. Like Justice Sandra Day O'Conner, who brought her husband to the Supreme Court for years with Alzheimer's because he was to "agitated" when she left for the day. Maybe that's who I should ask for a better word. Doctors- they do not live this. Spouses- we do.
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