Guest Voice: What it means to be an ALS caregiver

When my late husband, Craig, was diagnosed with ALS, we were very naïve and didn’t really know much about the disease. ALS has since been in the media more, so now people have more of an appreciation of what it means to have it.

The only thing we knew back then was that it was effectively a death sentence. We both had to come to terms with what that meant. Craig had to get his head around the fact he was going to die, but also that he was going to be locked inside his body while he coped with it.

I had to come to terms with the fact that I was going to lose him and that the future we’d planned together wasn’t going to happen. I also knew that I’d be caring for him in a way that wasn’t a typical husband-and-wife relationship.

I promised myself early on that I would always try to be cheerful, smile, and never let frustrations or tiredness show. I was aware that it wasn’t Craig’s fault, and any frustration I had was nothing compared to what he must be feeling.

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I also knew that I would feel bad after he’d died if I hadn’t tried to be happy and positive. I would’ve looked back and regretted it, wishing I’d tried harder. I didn’t want that hanging over me after he’d gone. I knew I’d have enough trouble surviving without that to cope with as well.

I can’t say I managed it all the time — I’m no saint — but I did most of the time. That’s not to say we didn’t cry and get upset, because we did. We cried together over things we were losing and the future we wouldn’t have. I cried by myself, too, when Craig couldn’t see. At times, I just needed to let the emotions out.

We didn’t know how the disease was going to progress, and we didn’t research it. It wasn’t going to make any difference knowing. We couldn’t change what would happen. We just dealt with each new setback as it arose.

What people don’t see

I sometimes think that when you say you’re a caregiver, people just nod and make some glib comment without realizing or having any real appreciation for what it means to care for someone living with ALS. Mind you, I’m not sure I appreciated it beforehand, either. I couldn’t really grasp the idea that people had no time for themselves while caring for a loved one, but now I understand completely after having been there.

I had no time that was my own, particularly in the last six months, because Craig needed nearly 24-hour care. He couldn’t do anything for himself. He often needed repositioning because he was uncomfortable, even during the night.

In his last weeks, Craig didn’t sleep well, so I would talk, read, or stroke his head to calm him. When he slept, he woke frequently because he needed adjustment. I got used to waking when he stirred and was able to go back to sleep the second my head hit the pillow. One of the hardest things was to always do it with a smile and never sound irritated at having been woken for the umpteenth time, but I managed it somehow. I’m so glad I did.

During the day, I was either dressing, washing, feeding, moving, reading, or talking to Craig to amuse him, or watching a television program with him. He didn’t like it when I wasn’t there, so I tried to cook and clean in the few spare minutes I had. The house inevitably suffered, and I did eventually find a cleaner for the last few months of his life, which helped enormously.

When Craig’s friends visited, it freed up a little time for chores, but I could never go far in case he needed moving, needed the toilet, or people couldn’t understand him and needed me to translate.

I will never again underestimate what it’s like for others to care for someone with ALS or any illness. I felt I was lucky, as Craig was easy to look after. He was cheerful and helped where he could, and he never complained. I was fit and strong enough to lift him until he became too floppy.

I was also lucky that I had support from a very good professional team. I can’t help thinking that I don’t know how I would’ve coped if I’d had to battle for equipment or if I’d been a different kind of person. Indeed, if Craig had reacted differently, I doubt I would have been able to manage.

I had so many things to be grateful for, despite everything.

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