ADAPTATION IS KEY
As I grow older, I’ve learned that adapting is not only a key to dealing with ALS but it’s also very much a key to life and happiness. Add that to managing expectations and you’re doing all right!
The only constant is change.
As Brian’s disease has progressed we’ve found ourselves in so many situations that called for adaptation. Just as soon as we get used to one routine or piece of equipment, things change and we have to adapt to something new. It’s always something!
The goal is, and always has been, to keep Brian as independent and comfortable as possible. In the very beginning that meant tying his shoes for him, then cutting food for him, then finding utensils he could hold, and other items that could make things easier for him.
When we first moved back to Georgia, there was a year when I went to work and Brian could still be on his own. In the morning I’d get up early and prep Brian’s food for the day. For breakfast I’d leave a ham biscuit in foil in the oven on super low. The foil was left slightly open so that he could open it all the way, as his hands couldn’t grip anything. For lunch it was a sandwich in slightly open foil…anything like that where it was ready and easy for him.
Sadly, that didn’t leave much variety, but he didn’t complain and he was so happy to have the year to himself in our home. He even had his studio upstairs for a bit.
As we came up against more and more issues, we started to realize that first of all, there’s no road map for this disease, and not every assistive device or idea works for every patient. For the longest time we dealt with Brian’s head dropping. We tried several neck collars and devices that were either prescribed ($$$) or recommended by others. We just couldn’t find anything that worked.
After some time we figured out our own ‘thing’ that would work, and that was just arranging pillows and/or towels around him in a certain way so that it wouldn’t fall. Or even using one of my headbands to put all around Brian’s head and the back of a chair.
When Brian complained repeatedly about his elbows hurting in his power wheelchair, he tried a couple of different armrests for the chair but they just didn’t feel better for him. I ended up sewing a couple of little pillows to add some cushion to the armrest and that worked!
Brian’s hands are always cold. We tried a few different ways to keep them warm, and we settled on something so simple. I filled two socks with rice. They can be tossed in the microwave and will keep the heat for at least an hour. And they are squishy and can be moved around to fit his hand. He loves them!
The main photo in this post is of our dining room. For the longest time I was running our Etsy shop in three different places because I didn’t want to “lose” my dining room. My office is in another room and I need to be in the same room as Brian as much as I can.
So I’d work at the dining room table. That way I could keep an eye on him, and it gave me enough space to spread out. But I still had my vinyl cutter in the office, and my heat press in the garage. One day I just decided it was time for a change.
I took an afternoon to break down my desk (was built in my office) and put it back together in the dining room. The next time our friend Jimmie was visiting I asked him to help me move our dining room table off to the side. I’d known that putting my office in our dining room would make things easier all around while letting me keep a better eye on Brian, but the thought of losing our nice dining room was bumming me out.
We’d always loved entertaining and hosting, and the dining room seemed like one of the last ‘normal’ places in the house. I said something about being bummed to lose the dining room to Jimmie while we were moving the table. He responded with a laugh and said something like, “Yeah, cause you’re having all those dinner parties these days.”
He was just messing around and he was totally right. What was the big deal? So what? We don’t have dinner parties and who cares if the ‘dining room’ is now my office? It was a simple mindset change and now I am SO happy I made the change. Brian likes the new setup as well, says it just feels better and he has a better vantage point of me.
I wish I’d made the change sooner! The same went for our living room. Each night we’d gather everything up and roll into the bedroom to sleep. It takes several minutes to move Brian from one room to another. Finally I asked Brian if he’d be okay with me moving the bed into the living room. He said it made so much sense, and it does. It’s just nice to know that at night we can do all the things to get him ready and can stay put.
Basically our home is a mini-hospital. Brian and I live in the living room, for the most part. Part of the kitchen is used to sanitize and prepare trach tubing and the large bookshelf in our living room is now used for medical supplies that we use all day, every day.
Think outside the box and don’t worry about what’s “normal”. There’s no such thing. That perfect assistive device might not be out there, so it will be up to you to figure things out…and you will!
Things are always changing, of that, you can be certain. Adaptation is key! I’d love to say go with the flow but that’s advice I need to heed more myself.
So yeah, go with the flow, but also keep in mind that ALS is going to bring many changes. Be ready to adapt. Great advice for living with ALS, and for life in general.
