It's been a long, long day. Up at 4am when Casper got up for the first time in12 hours. Stopping her from heading to the bathroom without her walker and me behind her. Stopping multiple almost falls in that short trip. Irritating the hell out of her because she hates needing help. Now it's 4:15. I have to be up at 4:45 to take Casper's sister Tammy, Niece Carla, and great niece Alyssa to the airport. Sleep? Nope. Shower, pack the car, get ready for work. Who needs sleep?
Casper doesn't look "normal." She wasn't moving well. She needed a complete lift to get up. She couldn't form words. She was way beyond tremoring. Now we are into Myoclonus:
Definition (From The Mayo Clinic) Myoclonus refers to a quick, involuntary muscle jerk. For example, hiccups
are a form of myoclonus. So are the sudden jerks, or "sleep starts," you may
experience just before falling asleep. These forms of myoclonus occur in healthy
people and rarely present a problem. Most often, myoclonus occurs as a result of a nervous system (neurological)
disorder, such as epilepsy, or of a metabolic condition, or as a reaction to a
medication. Symptoms:People with myoclonus often describe their signs and symptoms as jerks, shakes or spasms that are:
Sudden, brief, involuntary, shock-like, variable in intensity and frequency, localized to one part of the body or all over the body, and sometimes severe enough to interfere with eating, speaking or walking. (
http://www.mayoclinic.com/health/myoclonus/DS00754/METHOD=print)
In our world, the Lewies now include Casper being jerked around- from her arms, legs, face, neck, even her ears! It's bad enough that she tremors from head to to toe- now her body is yanking her every which way, night and day. After the wedding she slept- all night, all day, and into Monday. At 4am Monday she wanted a sandwich- and then could not figure out how to get it into her mouth. Her sister Sandy stood watch as I headed to the airport, and less than half was eaten. She couldn't sit up- she falls over. She couldn't talk well enough to be understood. She slept more. At noon she was still asleep. She woke in pain and went back to sleep. At ten am she refused to cooperate with her meds for her brother. At 3pm she fought with me. She chewed her pills because swallowing didn't make sense. She could not figure out how to sip from a straw.
I knew all this. I do this for a living. I tell families to follow their nurse's instructions and to avoid straws because they are too complicated. Do you think I remembered any of that? Nope. Not word. I became the hospice family that failed to hear the education provided. And I do that education. Really?
So I texted for help. Not too big a text. More like "OMG I need help please come right now. but I am ok. Really." That kind of text. And help came. Calm. Come on Jill. you know this stuff. Pull it together. No more straws. Soft foods. We can talk about meds if they won't go down. She may be just overtired. Or this may be a downturn. If that's the case we need to cope, not wig out.
Got it. Wigs are on, not off. After work I bought all the Haagen Dazs without crunchies I could find. Pudding. Small cups. I'm a crisis manager. I can do this. I tell the rest of the familia. I dose her with morphine because the neuropathy is out of control. Casper feels like her legs and arms are on fire. I back up- the "Do not touch me" warning is a strongly worded one. Stupid Lewies. Stupid PD. I want to comfort my wife. We've been married for 48 hours. And I can't touch her: It hurts her too much.
And so tonight we wait. Is it better if it's just exhaustion? Is it better if this just does what it's going to do and Casper does not have to deal with months and months of this? It's not my call. It's not fair to her. It's not okay with anyone here at home. For the next few days we will watch and listen and comfort if she can allow it. And we will feed her ice cream with chocolate sauce that will spill all over her and the bed. Because it makes her smile inside.
No comments:
Post a Comment