Caregiver perspective: Waiting for the Next Shoe to Drop

I was talking to a fellow caregiver this week about an event that occurred to him and he made the comment, “Yeah, I’m just waiting for the next shoe to drop.” That comment really struck home. I confess; 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, then 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 goes to sleep 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 dip stick 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 worse 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. If he is having more difficulty with bowel movements, is his GI tact now affected? If there is a slight tear or abrasion on his skin, will I be able to heal it? If he strangles when drinking is 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 set back or new symptom to learn to manage.

My Dad says he listens all the time for my Mom to fall since she is so weak. I know that feeling. When Lynn was walking I was “listening” all the time for a thump or thud. Then, I would listen for how much difficulty he was having 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 verse 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 on his own.

I used to make a lot of 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, 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 really 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 in heaven, he will be whole again 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; tremendous loses 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 my role model for taking a bad thing and turning it into something positive. He was a very talented vocalist, musician, and carpenter. Now he’s a published author and getting ready to release his third book. He doesn’t let his loses keep him down. He speaks to hope and acceptance.

Now, who is caring for whom?

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