I talked to a fellow caregiver this week about an event that occurred to him, and he commented, “Yeah, I’m just waiting for the next shoe to drop.” That comment struck home. I confess that I’m like that most of the time. Lynn, my husband and the person I provide care to accuses me of being pessimistic, but honestly, if I don’t expect the worst, I won’t be prepared if it occurs. It’s a matter of self-preservation from my perspective. I do admit, though, that I can take it too far.
Scenario:
Lynn has gotten a double dose of baclofen in his pump to reduce the number of spasms. Baclofen is a muscle relaxer. Not only does it relax muscles, it makes him sleepy. Therefore, he sleeps h-o-u-r-s at a time, wakes up to eat, and then sleeps again.
My “what if” talk in my head goes like this…
He sure is sleeping a lot. Shouldn’t he have adjusted to the dose by now? It’s been a month. Maybe it’s something more. Just because he has more baclofen on board doesn’t mean that’s what is causing his sleepiness. I think I should check to make sure he does not have a urinary tract infection that is not showing up yet. I wonder if his CO2 level is too high. With his sleep apnea, he might be retaining carbon dioxide, which would make him sleepy. I’ll have to make sure he’s oriented when he wakes up. What if it’s something new? And on and on and on….
With all those thoughts running around in my head, I start being more vigilant, checking his urine with a dipstick to see if anything is off, making sure he’s oriented when awake, making sure all else seems to be okay, just in case…
Not only do I think the worst if there is a significant change in his behavior, but I also tend to do it ANY TIME he’s a little “off.” If he can’t find his words or remember something we recently discussed or watched, I wonder if the MS is now affecting his memory. If he’s out of sorts about something going on in our lives (and there seems to always be something), I’m wondering if he’s suffering from depression. Is his GI tract now affected if he has more difficulty with bowel movements? If there is a slight tear or abrasion on his skin, can I heal it? If he strangles when drinking, are his throat muscles becoming affected? I am always looking for a sign that something is not right. I’m always watching and waiting and planning for the next setback or new symptom to learn to manage.
My Dad says he always listens for my Mom to fall since she is so weak. I know that feeling. I was “listening” to a thump or thud when Lynn was walking. Then, I would listen for his difficulty getting up before I stepped in to help. Now, he doesn’t walk, but I listen for things to fall that he’s trying to use. I listen for frustration versus challenge to his reaction. I try to anticipate what he will need and when I need to step in versus when I need to let him do it independently.
I used to make many plans for the future, but now I live week to week, sometimes day to day, dealing with whatever is placed before me on that day. I live hoping for the best but expecting the worst so that whichever comes, I’m prepared. I strive to make his life more tolerable, to give him hope, and to keep him from feeling despair over what he can’t do. But is that my job?
Lynn told me something I didn’t realize recently. He says he doesn’t dwell on what he can’t do anymore. He rarely even considers it. He now focuses on what he can do and how to use what function he has left more efficiently. He also knows that this life is temporary and he will be whole again in heaven, so he looks at this life as one in which he adjusts to the challenges before him and learns to use them according to God’s plan for his life. He’s had big changes to overcome and tremendous losses, but he has accepted those and made the best of them. I’m in awe at how well he copes. He is my inspiration and role model for turning a bad thing into something positive. He was a very talented vocalist, musician, and carpenter. He’s a published author and getting ready to release his third book. He doesn’t let his losses keep him down. He speaks to hope and acceptance.
Now, who is caring for whom?
This article originally appeared on Multiplesclerosis.Net by Health-Union, LLC, and has been reposted with permission.
