By Saundra Stewart
ALS is unique in that no two cases start exactly the same, and no two cases end exactly the same. Don made some decisions early on in his illness (no feeding tube and no vent) that affected the way I cared for him. Your situation will be different, but let me share what worked for us.
There’s so much involved in caring for an ALS patient that I often thought there just weren’t enough hours in the day to do it all and do it well. So, I used everything I could to make my life easier. Don made it easy, because he wasn’t afraid to try new things, if I thought it was worthwhile. I kept my eyes and ears open for new gadgets or methods of operation that would lighten my work load, but still get the job done effectively. Here are some of the things I found:
Don chose to not have a feeding tube, so for the last year or so of his life, I pureed everything and he sucked it through a straw. Our daughter had the Ninja blender, and it came with individual glasses that I could use to puree a single meal at a time. I kept beef and chicken broth on hand to blend with whatever we were having to make it thin enough that he could suck it through the straw. I pureed everything from his eggs (sunny-side up, please) and sausage in the morning, to chicken, potatoes and gravy for dinner. We learned that I could even puree some of his favorite desserts, and he could drink them through a straw. When I would take him for our frequent drives to the country-side, I prepared his lunch beforehand and took it with us. That way, he didn’t feel left out if I went through a drive-through and picked up a burger and soda for myself. This method worked well for us, and I felt comfortable knowing he was getting adequate nourishment.
In pureeing his meals, I also came upon something we called “the fat straw.” You can buy them at Sam’s, and they actually are fat straws! We would buy them by the box, and I used them for every meal. I kept some in the car for those rare times while we were out that I would randomly run through a drive-through and pick up a strawberry shake, a special treat. Don loved it that he didn’t have to exhaust himself trying to suck thick meals through a skinny straw.
A dear friend whose husband has MS put me onto another invaluable help. She clued me in about what we called the slicky tube. It’s a handicap turning tube, and it’s wonderful. I learned exactly how I needed to place Don’s legs, feet, arms and hands to turn him successfully, without catching an arm underneath him or a leg bent in the wrong position. The one we came upon was actually a tube, not a flat sheet-type covering. It had straps that ran down each side and was only about three feet wide. I loved it, and it made turning him so much easier.
Don wasn’t able to get into the shower, even with the tub seat, so I bathed him in bed. While I was bathing him, I would try to massage his legs, back and arms to give those weary muscles some rest. After I had washed, rinsed and dried him well, I would slather him in lotion from head to toe. I say with a bit of pride that Don never had a pressure sore in the 11 years he was dealing with ALS. His heels would get sensitive from sitting in the powerchair for such long periods of time, so I would put a small pillow behind his heels and pay special attention to any trouble spots when I bathed him.
I also shaved Don most every day and brushed his teeth most days. You may think that was totally unnecessary, but we didn’t think so. Before ALS, Don always kept himself clean and presentable, except when he was working, of course. It mattered to be able to feel good about himself if company stopped by or if we had an appointment to keep. What mattered to him mattered to me!
We also had the lift that got him out of his chair and upright enough that I could put him on the commode. This became a bit tricky toward the end, because I had to make sure he was strapped securely enough not to slip down while I was in the process of moving him. It still made it much easier on both of us, though. I didn’t have to worry too often about cleaning him up from potty accidents, because he couldn’t make it to the commode in time, and he felt a bit more in control, because he could let me know when he needed to have a bowel movement. We used the urinal all the time at home, and I kept a urinal in the van at all times as well.
At night, I put him into bed using the over-the-bed hoyer lift. Before he became completely unable to help me, we simply used the bed cane. But, of course, the time came when that wasn’t adequate any longer. My hoyer was battery operated, and I loved it. (By the way, all this equipment was furnished to me from the ALS Association’s St. Louis Chapter loan closet.) Knowing I didn’t have to pull and lift on Don quite so much made bedtime much easier for both of us.
Don became almost totally unable to communicate at the end of his life, but he could still make me understand what he wanted. They had tried to pair him with the voice computer that works with the eyes, but he was unable to use it due to a bout with the shingles early in his ALS journey that thickened the retina in his left eye. Fortunately, he was able to communicate with me by a simple nod or grunt. I would highly recommend this eye-controlled voice computer, if it’s doable for you.
I don’t know what you’re needing in your bout with ALS to make life easier for you, but I encourage you to research, ask questions, and be specific in voicing your needs. The help is there, you just have to find it.
Today’s blog post is part of a recurring monthly series from our good friend Saundra Stewart. When her husband, Don, was diagnosed with ALS, Saundra became his full-time caregiver for over 10 years. In her series, “Walk a Crooked Path”, Saundra shares her insights on ALS as a caregiver.