By Saundra Stewart
If I had a dollar for every time I had been told to “take care of yourself”, I might be a rich woman! People were well-meaning. They wanted me to know that they thought of me and understood the weight I was carrying. But I almost laughed out loud! Just when was I supposed to do that? Was God going to allow me some extra hours in the day so I could go to the gym and work out or even sit down in a cozy chair and lose myself in a book for an hour or two? Rather doubtful. So I snickered inwardly, smiled, and sent them on their way.
Don and I had chosen (well, actually, he made the decision and I supported him in it) to not allow the feeding tube or ventilator. He knew what the ultimate end of ALS is, and he chose to fight it his way. I respected that. But it did make caring for him a bit more time consuming. We were blessed to have the Hoyer and the Gantry and multiple other gadgets and helps. It made life easier, but it took more time than I felt like I had some days. I had also trained myself to get up every hour and a half to two hours all night long and turn him, check on him and see if he needed anything. Let me tell you why . . .
One night, when I put him to bed, he said, “You don’t have to get up tonight and turn me. I’ll be okay.” I agreed, tucked him in and crawled into my own bed. We always ended our day with prayer. All through our marriage, we had prayer together before going to bed. Don would pray, and I would listen. Since speaking had become so difficult for him, we reversed roles. I would pray, and Don would listen. So we prayed. I would kiss him; he would say, “You’re my angel.” And I would reply, “And you’re my hero!” As I crawled into bed this night, I thought that, perhaps, I would go ahead and sleep a few more hours, if I could. So I got all comfy and snuggled down in the covers. I thought, “I’m going to lie here as long as I can without moving a limb – just like Don has to do every single night.” So I put the clock where I could see it, closed my eyes, and tried to relax. I hadn’t lain there more than a few minutes when I began to itch. But, if I was going to lie perfectly still, I couldn’t scratch. To condense the story a bit, I decided that I owed it to Don to continue to get up every few hours during the night and turn him. Having to lay still for that long a period of time was torturous. Often, if he was able to nap during the day, I would stop whatever I was doing and grab a nap as well. That helped.
Since I had been counselled repeatedly to “take care of yourself”, I found some ways to do just that.
I play the piano, and I get great enjoyment from it. So, when I could grab a few free minutes, I would simply go in to the piano, and serenade myself and Don. To be honest, he loved it, too. (At least, he said he did.) It was a release from all the tension that had built up during the hours before, and it was something I truly enjoyed. I had developed a condition during my care for Don that caused me to lose my voice completely for over a month and left me with damaged vocal cords, so singing became impossible. But I could still sing in my heart!
The ALS Association provided us with a caregiver for three hours every week. Fortunately, the young woman that cared for Don happened to be from our church, and she was great. I always had to use those hours for the “have to” things – grocery shopping, and appointments, etc. But, when it was possible, I also included a trip to the Goodwill (one of my “go to” places) or another fun place to shop. I call that taking care of myself!
At first our grandson, and then Don’s younger brother would come stay with Don on Sunday morning. I continued to play the piano for worship at church during Don’s illness and also had taken over teaching the class that he and I taught together before he became unable to do it any longer. Their helping out enabled me to continue to carry on with those things I had done before Don became unable to attend all the services with me. Often, the worship services and the class participation would refresh me as much as anything possibly could. I knew Don was with someone he loved and trusted, and that helped me to relax where I was. Don had requested that I continue to take him to the Sunday evening services as long as he was able to attend, and I lovingly honored that request. Every Sunday evening, I got him cleaned up, then packed up all his gear and loaded him into the van. It became a time of refreshing for both of us, and he was able to attend up until the last Sunday evening before he went to Heaven the next weekend.
Don and I had developed a habit early in our marriage of holding hands. People actually teased us about it. But it became a “must do” for me during Don’s illness. He, of course, became unable to grasp and hold my hand, but I could still clasp his hand in mine. And I did. Almost any time we were sitting beside each other, I would be holding his hand. I was taking care of myself! I needed him there, and I needed to feel him beside me.
Another thing I did to escape a bit was to schedule the occasional lunch with a family member or friend during my free time. I could usually have a nice leisurely lunch and still accomplish the grocery shopping or other things that I had to get done. It almost made me feel normal again, and that was important to me.
I was well aware of the things that Don enjoyed doing with his time, so I tried to enjoy those things with him as much as possible – watching YouTube banjo pickers, listening to particular ministers, watching certain TV shows. If I had been given my choice, I probably would not have chosen the same things, but it was important to me to spend that quality time with Don. In so doing, I was taking care of myself.
While Don was able to communicate, we would have a group of his bluegrass playing buddies over to the house to pick and grin. To see Don enjoying himself with his old friends was refreshing to me. It ceased being so much fun after Don was no longer able to play his banjo, but, as long as we could, we jammed!
Take care of myself? I was! Maybe not in the way a “normal” person would, but in my own way. Don was my life, and my mission was to make his life as worthwhile as possible. To see him happy and content was worth every effort I was making. So, yes! I was taking care of myself.
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.