By Saundra Stewart
I find myself remembering some odd things from time to time. I can barely recall some of the crises Don and I faced together during his war with ALS, but I can see clearly the look in his eyes during that time. I don’t necessarily remember what the doctors said, but I can tell you, verbatim, things that Don said to me when it was a major struggle to even speak.
The lesson I taught my class this week at church was from Chapter 7 of a Max Lucado book titled “Unshakable Hope”. It was talking about how God does the impossible. When we’ve gotten to the end of our rope, He’s there. But God can do nothing as long as we stubbornly hold onto our own will. It made me think of two specific times during my time of caring for Don.
Before he was impaired enough to be in the powerchair, we would get up every morning to start our day. I would help him get his pants on and put his shirt on for him. Then, I would go in the kitchen to start breakfast and leave him to button his shirt. One day, we went through our regular routine, but, by the time breakfast was ready, he still hadn’t come out of the bedroom. I walked in there to find him quite frustrated and struggling to button his shirt. When I looked closer, I could see that he had managed to finish with one button, but was stuck on the second. I said, “Would you like me to help you?” “No!” he replied. “I was able to do this yesterday!” I stepped back and shut my mouth. After struggling a couple more minutes, he finally said, “Okay. Will you do it?” I, of course, was more than happy to help him, but I knew Don well enough to know that he would have to totally exhaust himself trying before he would be willing to concede the struggle.
Another day, he was already compromised enough that he was in the powerchair. I shaved him and brushed his teeth almost every morning, because I knew he had always taken pride in his appearance. This particular morning, when it came time for me to shave him, he decided that he could probably do it himself. I thought otherwise, but I didn’t say a word. He hadn’t digressed to the point of needing a hospital bed, and we didn’t have the Gantry system yet, so we had a bed cane on his side of the bed. His plan was for me to prop his elbow on the bed cane, put the electric razor in his hand, and then he thought he could do the rest. The first part of his plan proceeded just fine, but when it came time for him to actually shave himself, he simply didn’t have the strength in his arm to hold the razor up. We went back to square one a couple times before he finally gave in and asked me to shave him.
That was Don. As long as he had the strength to do something on his own, he certainly had the willpower. It always deflated him just a bit to find something else that had slipped away from him. I honored (and even admired) his persistence. There were times that it made my life a little more difficult, because, what I could have done in a couple minutes was taking him quite a bit longer. But it was well worth my patience to see the satisfaction on his face when he had actually been able to achieve a task.
I remember the last time he was able to ride the riding mower to mow the yard. He wasn’t in the powerchair yet at that time, but was navigating on a scooter. Once he decided he could do it, there was no stopping him. So, I helped him hoist himself from one seat to the other, started the mower for him, and stood back. He did it, but he also admitted when it was over that it would be the last time he attempted to mow the yard.
I admired that about my man. He wasn’t about to just sit down and let ALS take him prisoner. He fought it with all the power he had within himself, and didn’t hesitate to ask for God’s help as well. I’m not sure I’m that strong—but there was no reluctance in Don to give ALS a good fight.
What made him that way? For one thing, he had a strong faith in God. He knew that, whatever happened, he was a winner. Maybe he was a bit stubborn. Okay. Maybe he was a lot stubborn, but he put that tenacity to good use. There were times during those years that, secretly, I wished he would just let me do things without having to wait on him. But while he was learning, so was I.
I believe that a good caregiver never steals from the patient the ability to be as independent as possible. A word of encouragement when you see your patient struggling goes a long way. Be inventive. Find little gadgets or ways to help that are a bit off the grid. You won’t regret it. In fact, it can be just another way for you to bond with the patient. ALS is a thief, and a nasty one at that! Anything you can do to build your patient’s confidence and be a major part of his/her cheering section is well worth the effort.
The day before my sweetheart passed away, we had spent the day in the ER. Don had struggled so desperately to breathe, and he had worn himself completely out. He indicated to me that he needed something for pain, so I took him to the hospital. They gave him a light dose of morphine and encouraged me to leave him there. I refused. Don and I had already discussed this part of the program, and I knew he wanted to be home, if at all possible, and I wanted him to be home as well. So they brought him home by ambulance. We had spent so much time waiting in the ER that Don had soiled himself. We had friends and family here, but I knew Don would feel better if I cleaned him up. So, I stripped off his soiled clothes, bathed and lotioned him well, dressed him and put him back into this powerchair. When I got him situated, I told him I really needed a hug. He was past talking and could do absolutely nothing to initiate a hug, so I lifted his arms up around my neck. His head flopped over onto my shoulder, and I held him tight. I think it was probably the best hug I’ve ever had. I took his arms down, straightened his head, and positioned him properly in his powerchair. That was the last hug I ever got from my precious man.
You’ll never regret allowing your ALS patient to be as independent as they can be and are comfortable being. You’ll never regret the kind words and loving gestures. And you’ll certainly never regret making someone’s last days as bright and loving as they can possibly be. Okay. Maybe you’ll have to try some things more than once before you find what works. But don’t give up. There are definitely nights when you’ll go to bed so physically and mentally exhausted that you can hardly crawl between the covers, but there’s always tomorrow. Get up the next morning with a smile (even if you have to paste it on) and determine to make it the best day yet! You can do this! You’re a winner!
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.