Caregiver Perspective: Something New to Deal With?
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Profile photo of Donna Steigleder

Every time Lynn starts acting differently for several days in a row, I start to wonder if it means there’s some new problem we have to face. MS can affect so many different body parts and functions that I just never know if a new problem is MS or something else.

For instance, Lynn has been sleeping a lot. He talked to his dietitian who thought he needed more protein in his diet; so, we added two protein shakes a day. He loves them and he is putting on a little more weight (he lost a lot dieting and not tracking how much he was losing) which is probably a good thing, but he still sleeps much more than he used to sleep. Now, I know MS causes fatigue and I know that our sleeping habits are poor because he wakes so often to empty his bladder but is this just the natural order of MS; lots of fatigue leading to the need for more sleep? Should he sleep this much if he’s tired or does sleeping a lot cause him to feel tired? Could be either. Should I be concerned or just let it go as part of the normal course of MS?

Something else that is relatively new is his difficulty with word finding. Being a writer (he has published three fiction fantasy books since he became unemployed), it’s very frustrating for him when he is dictating a scene and can’t figure out the word he’s trying to say for his typist. Makes for some slow writing. However, it can also make for some interesting conversations for us. Most of our conversations now go something like this, him: “I need you to scratch….” I wait…..and I wait…. And then I start guessing body parts till I guess right. In fact, more often than not lately, he starts a sentence and we end up playing charades. He points and I guess till I get it right.

He also seems more forgetful than usual (unless he’s remembering and I’m forgetting which could also be the case.) There have been a number of times lately when he’s mentioned something and was absolutely certain he had told me but I’m just as certain he did not. I wonder if in one of the “trail off” conversations, he has thought what he wanted to say and maybe even said it to himself but didn’t tell me but it’s so real, he thinks he did. I try to give him the benefit of the doubt because I admit, I don’t always listen attentively to his conversations (he’s a trivia buff and I’m not so I may tune him out on occasion). If I’m honest, it’s possible he told me and I just forgot.

Each day it seems I’m looking for what else I might find wrong. He’s not getting worse and in fact seems stronger at times but he’s so inconsistent. Anything can set him back. If he works all day with his typist then the next two days he might be in bed exhausted. Trips to the doctor often result in exhaustion. He tries to stay awake but he just can’t help but fall asleep. I know MS fatigue is a powerful symptom to overcome but is this typical?

It’s so difficult to know just what to expect. Since he’s progressive now rather than relapsing remitting, I guess, he’s not as likely to wake up deaf or blind one day, but is that true? Could he still have those sudden loses without the hope of it remitting? I guess but I’m not sure. I just hope not.

It’s like always waiting for the other shoe to drop. It’s just like when someone asks how he’s doing.  He’s fine until he’s not and then we work on making it fine again until the next time. Any new symptom can mean a lifelong change or it could be just a temporary annoyance. It’s why I try to just live each day one day at a time. I deal with what I have to deal with today and try to forget the rest. I admit that’s a challenge for me and I am often not successful but when I am, I have much greater peace of mind.

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