“You know, there is a support group for PD once a month in Riverside.”
“uh huh.”
“Maybe we could go this month?”
“I don’t think so.”
“But I want to. They have speakers. We can meet other folks like us. We can learn from them. None of our friends are facing this. Just us.”
“I dunno.”
Three days later…
“The meeting is tomorrow. I want us to go. Please?”
“Maybe.”
“I will be home at 12:30 to pick you up. If it gets too long, we’ll leave, ok?”
Who can believe that Casper actually got up and got ready, especially after tremoring all night for two nights? And having olfactory and visual hallucinations? How much can one person take?
So we were late, of course. There was rain. Traffic. Children. We walk in, slowly, at 1:10pm. Casper is listing to one side. The lady at the front desk of the Senior and Handicapped Center (How’s that for a happy name?) knew immediately what group we were there for. That was a little shocking. We try to find a seat, and there are none. She’s rocking to one side. I find the leader, who I met last week, and she gets Casper seated right away. We look around.
The lady next to us who is falling from her walker seat. The man in front of us who uses his coat pocket to keep his arm in check. The man across the way who is at 90 degrees to his walker chair and jerking from side to side, the man who is bubbly and full of ideas but cannot control his voice or thought process. We are the only lesbian couple. We are also almost the youngest folks there. I am suddenly afraid. Deathly afraid. For both of us. What is this doing to Casper seeing this all around us? Is she going to be able to cope afterward? What happened to our life? I want to be back on Maui with the surf and the whales and the peace. This cannot be our future.
But it is.
The man who is telling us about voice training so his wife can hear him. I poke Casper- you need that. I told you I can’t hear you. She responds- you think I speak too softly? Umm… yes. The guy talking about drooling. Poke. She glares. No, I say, they are talking about using meds we know from hospice. Why didn’t we think about that? Atropine would be great. Of course that was the PD. We just didn’t put it together.
There are introductions. Casper refuses to talk the first time. I say a few words about her diagnosis. I kick myself a few minutes later for not saying “And she’s a nurse. She worked full time before this happened. We had a busy life. She knows this stuff.” Next time, I will. She will be a nurse first, a patient second.
Then the big shocker- her sweet tooth. Yep- PD 101. Lose your sense of taste except for sweet and sour, and you get an instant sweet tooth. Casper didn’t have the words to tell me she could not taste other foods, and I was too stupid to put it together watching her refuse to eat almost everything. Hell, she lost five sizes. I did not care about her sweet tooth. I just wanted her to have real nutrition. She could not think to tell me she could not taste it. Suddenly 70% of the patients there were raising their hands confirming they had lost sense of taste and smell, but had weird smells occur that were not there. Olfactory hallucinations, a result of seizure activity related to PD. Who knew?
Then her dementia raised its head, and she was one of very, very few there today. “When is snack? I want a cookie. I see cookies.” “Hold on. They will say it’s done and then cookies.” When it was over, the line around the sweets was immediate- and Casper was first. And there was Blaine, from our church. “I never met a chocolate I didn’t like.” Bless him. Always gentle, always kind, and sharing brownies, by the handful, with Casper. Three trips to the brownies today. More to go.
In between, she handed out the hand sanitizers and pens I brought from hospice. She worked the room, although a bit less steady and a bit less sure, like she used to do when she was doing BP and blood sugar checks at senior centers as a nurse. I watched, aching for the nurse and Casper she was before.
Part way through Casper was not so sure we belonged there. Three quarters of the way there, when we needed a bathroom break she wanted help to get there and was unsteady enough that she didn’t shake off my arm to steady her. On the way home…”You ok?” “yuuup.” (North Carolina slides in at tough and tired moments.)” “What did you think?” “It was okay.” “Can we go back next month?” “I think so.” “Glad we went?” ….”Yuuup.” And then she was asleep. Exhausted from all of it. Tonight the tremors are exceptional. And she’s waking up over and over to make sure I am here. PD 101. Always a learning experience
I am so glad that you both came to the group. I, too, was fearful when showing up the first few times, alone, trying to figure out what was going on with Hubby. I am glad that Blaine was there for Casper, taking the monsters out of the dark for her. And to share all the good, and the scary, making all of us more normal in our own worlds.
ReplyDelete