“How’s she doing?” comes the well meaning and loving question over the phone. I glance. Casper is awake and listening, and knows who is on the phone. One of her dearest friends. Now what? Truth? Soften it up? Short conversation with a reference to talking online later?
Truth it is, with multiple “ok?” questions back to Casper as we speak. She won’t pick up the phone most days. It’s hard to figure it out sometimes, or else it’s too much effort. Today is a better day, even though I have shared my cold and Casper is now suffering through the same sore throat and fever. She smiled more today. That’s huge, because with Parkinson’s you lose your ability to smile or show any affect on your face. I struggle with that one. I miss looking at her and seeing her smile back. A blank stare is hard to figure out. But today we had smiles! I harassed her about a family bbq, and she was able to smile while calling me a brat.
So tonight I trusted that if my answers were too close to home I would see some part of that on her face. “She’s ok. Some days are good for lots of hours, some days it’s mostly just bed. The pain is really hard.” How did she do with the diagnosis finally being made? How to answer that? Relief it was all real? Despair about what was coming? We both worked for hospice. We both saw the patients with the diagnosis of “paralysis agitans.” It was always, always awful at the end. We both know it. Patients in bed, trapped, unable to move, with pads to prevent injuries from seizures, decisions about feeding tubes, catheters, diapers, diets of thickened liquids that taste like crap. And death from pneumonia if you are lucky, rather than sepsis and skin breakdown. Before that dementia that steals your mind, causes stress, and takes away the person you loved, trapping them in a helpless, shaky body. The sad part is when the shakes decrease the symptoms are actually worse. Who wants that? When we were eating lunch before the doctor saw us, before the diagnosis was said out loud, she choked for the third time in four days. Food just will not go down some days. I looked at her and we both knew. “Do you want a feeding tube when that time comes?” “No, not ever. Not if I can answer or if I can’t. Do not keep me alive.” That look was unmistakable. No messing around.
“She’s doing okay, really.” We were glad it’s finally got a name, this thing that has taken over our lives. “She’s adjusting, and we are looking forward to the treatment that might make a difference starting next month.” Of course, I am talking to a nurse. Because all of our friends are nurses and social workers, with the odd mortician or college professor thrown into the mix. “You don’t want Cinemet. You know that?” Yes, we know it. And it didn’t work when we did try it. It only works in the early stages, and we missed those while we fought for a diagnosis. We are in the deep brain stimulation stage, and we have an HMO. It could take months, or more, for approval. But they care, they really, really do. That’s why it took 37 phone calls to get the ECT initial appointment set for next month, and why I had to drive all over town to get records faxed.
Casper- you okay with this? Smiles. Yes. The friends who know this stuff need to know what’s going on, because they will be our support in making the hard decisions later. They need to know where we are now. “She’s able to get up some days, not others. Some days are all day in bed, some days she can ride with me for four hours. We had a good day today, and she’s been down for hours now. Dinner went down ok too.” The unsaid words. You know what’s coming? And how soon it might come? Yes, I do. Yes, she does. But maybe we can keep her active and alert, despite dementia, for longer. Just maybe. We do not do denial around here. We have both seen too much. During the nights I relive Linda’s death over and over, Casper wakes me up and we talk it through. The inevitability, the peace she came to have, the love shown, the loss it meant. Sometimes for hours. Now I wonder- when will I be doing that again?
“Lunch on Sunday? With the gang? Can’t wait.” If I prepare her enough she will remember it and look forward enough to pull the energy for it. And she is up for it. I can see it in her eyes tonight. She will work on remembering names, the day and date, things to talk about. We’ll review them in the car that day, and I will sit next to her to choose food from menus that are sometimes foreign objects. This one will be her friend with pictures of pies, and soup that does not choke. I got this one. She will rest all day tomorrow just to be ready. Parkinson’s causes acute muscle pain all the time. Shaking is painful. Trying to stop shaking is more painful. Trying to walk is difficult. So she will stay down and low, and sleep and rest. And she will work really hard to get up, and showered, and ready for Sunday. We will have maybe four good hours, and make them count. Because we have this. And we can make it work for as long as we can. Stupid Parkinson’s- we are still ahead of you.
We got this! When life hands you Parkinson's, make Hawaiian Shave Ice, frequently!
No comments:
Post a Comment