So here’s the deal, Mike can’t really walk (he walks a little bit with his walker - really slow and shaky). He can’t lift his arms or move his hands and fingers on his own. He is hard to understand…his speech is really impaired and he has swallowing issues as well. He can’t scratch an itch or wipe his nose or feed himself or dress himself or shave or shower. Even so, Mike is still the most positive person I know. The only thing that frustrates him is not being able to verbally communicate the way he would like to. And yet, he laughs a lot at himself and at me. He’ll say, “Scratch my eye brow,” and I’ll say, “You want some pie now?” “We don’t have any pie.” He looks at me like what are you talking about, and then we laugh.I am Mike’s primary caregiver and to be honest I feel honoured to do the job, but it’s a lot of work. It’s completely exhausting at times and back breaking at times as well. It’s tested my patience like nothing else. Sometimes I get frustrated but I try not to let it show. I try to be nice all the time but find that a challenge once in a while.
Taking care of a grown man leaves little room for anything else; needless to say, my life has changed dramatically. It’s just the way it is. I’m not mad or resentful or sad. If I think for a second how I’d like my life back, I shake my head and remind myself that Mike is the one with ALS. I always tell him, “We’re in this together,” but he is the one with the debilitating illness and has a good reason to be mad or resentful or sad…but he is not. He is very content and I am humbled, again and again.Shortly after Mike was diagnosed, our dear friend Pamela gave us a very wonderful gift; a donation of four hours of home care a week. We didn’t need it right away and even when we could have used it, Mike wasn’t ready. I finally told Mike that I was ready and in August, we started getting help once a week. Voltaire is Mike’s home care nurse and is at Mike’s beck and call on Wednesdays from 10 to 2. He gives Mike his breakfast and a shave and a shower and brushes his teeth. Voltaire gives a perfect shave. He reclines Mike in his chair, lathers on the shave cream and slowly removes every hair on his face, running back and forth to the sink in the washroom to rinse his razor. Mike says Voltaire gives the best shave, and I give him the best shower. Well, that’s no surprise, when I give him a shower he calls it, “Wet t-shirt time” (I usually end up as wet as him). He also really enjoys the long head massage I give him when I shampoo his hair…I know he loves it. I scrub him from head to toe and when I’m done he always says the same thing; “I feel like a million bucks!”
Mike’s sister, Pat came out for a couple of weeks in September (right after his sister, Aileen was here to help us move Madison). Pat’s timing was perfect; she took care of Mike everyday while I packed up our house in preparation for our move. I would get Mike ready in the morning and then take him to her motel, where she spoiled him with the meals and snacks he really likes and gave him back massages. They did cross words and went for walks and watched whatever Mike wanted to watch on TV. My sister Elanna and I would walk up in the evenings and pick him up and walk him home. Elanna was also helping us out at home (and still does). She would offer to give Mike his breakfast (or dinner sometimes) so I could have a shower or make something to eat for myself. She would fold my laundry or do my dishes as well (still does). I thought to myself, with the help of three women plus Voltaire; Mike is well cared for.Anyway, it’s come to that time for more regular home care support (probably a little overdue). The community nurse and occupational therapists have been in a few times to prepare for more home care support starting tomorrow. I must say, this is one of the hardest things we have had to do so far. I want to be there for Mike all the time, but I know it’s important for both of us to get more home care help. It’s another adjustment we have to make and I’m sure we will be fine.
Mike says he has a problem - two spoonfuls and only one mouth