By Saundra Stewart
My sweet husband has now been gone from this earth for three years. If I thought the years preceding his death were difficult, it was because I didn’t have a clue what the years without him would be like! We had “grown together” in an amazing way in our just over fifty years of marriage. We had our disagreements and adjustments, just as any couple who has been together for that length of time has had. But we both felt it was well worth the effort.
When Don began showing symptoms of ALS, we made some decisions that would help me when we got farther down the road. I told Don very honestly that I would never put him in a care facility as long as I was at all able to care for him at home. And I meant it. There were times when he would see my weariness and he would say, “You probably ought to just put me in a home.” Instantly my resolve would revive. “Never!” I insisted.
We talked about what he would like his children and grandchildren to remember most about him. One thing we wanted to do (but never did) was to make a recording of his speaking to each of his children and grandchildren individually. The time just never seemed right, or he didn’t know exactly what he wanted to say. You know how it is. It was a great thought, but never carried through to fruition. We both regretted at the end of his life that we hadn’t made that happen.
Don had a whole collection of Bibles. Having been a minister for a number of years and a teacher in church for the years following, he had a nice stockpile. He asked me to collect them all, and he wanted to give each of the grandchildren a Bible. He had marked in them, made notes in them, and some of the pages were a bit worn, but those things would just show the grandkids how much he had used them and treasured them. We took care of passing them out in the final months and weeks of his life.
There were a few other things that he knew had special meaning to certain family members. Our son is a great guitar player. Don had a Martin flat-top guitar that he felt like Jeff would treasure. So he made sure that the guitar went to Jeff. His youngest brother had become very interested in the five-string banjo. Don had two, so he made the decision to give one of them to his brother. No one would treasure it like Tom would. And he gave a very special gift to our daughter. He threw out the first pitch at one of the Grizzly games. Following that game, he autographed (as well as he could) one of the baseballs and gave it to her for a keepsake.
One final thing I did was a bit of a consolation to me following the loss of my sweetheart. I bought a pattern, got out all of Don’s shirts that he wore often, and made stuffed animals out of them. Then I took a coordinating shirt and dressed the animals (not dressed in this picture). I made one for myself and for each of the children and grandchildren. Then I found a picture of Don wearing that particular shirt and put it in the gift bag with a note and the stuffed animal when I presented it to each one. Something about the gesture just made me feel good.
And then there were the things we simply wanted to make sure were said before we could no longer converse with each other. We had such a deep love that we wanted the other to know our feelings before it was too late. Respect. Honor. Those things God’s Word said we were to feel for each other. We tried to be quick to apologize when we knew we had hurt each other with hasty or sharp words. And we always went to bed with a kiss and kind words. He would say to me, “You’re my angel.” And I would respond, “And you’re my hero!” At the end, when he could no longer speak, when I put him to bed at night, I would stoop down by the bed, and those beautiful brown eyes looking at me would tell me everything I needed to know. I was still his angel, even if he couldn’t verbalize it, and he was forever my hero.
If you are caring for someone whom you love deeply, don’t neglect telling them how much you love them and exactly what the relationship means to you. They may not be able to reciprocate, but, if you look into their eyes, you’ll see it there. Don’t hesitate discussing the difficult things. Your patient may have specific wishes that you can fulfill for him/her. You will never be guilty of caring too much, giving too much honor, or trying too hard to please. ALS is a horrendous disease, and anything you can do to make the days a little brighter will be well worth it.
During the over ten years that I cared for Don, we encountered times when we didn’t agree. He was incredibly brave, but he also became incredibly weary of the fight. Near the end of his life, I had been using the cough assist, and he choked. The episode caused his heart rate to elevate, and his defibrillator started shocking him. It shocked him eight times before he finally had an actual heart attack. Of course, I dialed 911 immediately. She told me to lay him on the floor and start compressions. I couldn’t do that, so I laid his chair out flat and started the compressions that way. In a short time, the medics showed up and took over. I had saved his life, and, in a few days, he was back home with me. A day or two after coming home, he called me to his side. When I leaned down to see what he was going to say to me, he said, “Please, don’t do that again.” I knew exactly what he was talking about. We had gotten a DNR form filled out and notarized, but I didn’t know the position it would put me in. I said, “Are you telling me that you want me to simply stand by and watch you die?” He confirmed that was exactly what he meant. I’m being honest with you when I say that I didn’t know if I could follow his wishes or not. When the time actually came, I didn’t have to make that decision at all. Don slipped into a coma on Sunday evening before actually passing this life on Monday evening.
He died here at home, in our bedroom. A few family and friends were here. It was just the way he would have wanted it. And I wasn’t put in the difficult position of having to make a decision whether to intervene or not.
Coincidence? I don’t think so. Don had spent every day of the last several years of his life doing his best to follow Biblical principles. God didn’t forsake him or forget him. No regrets. What beautiful memories I have! Make lots of them for yourself!
This will be my last article for the ALS-Connect. Thank you for reading my meandering thoughts. Remembering isn’t always easy, especially when it involves someone you’re missing sorely. Our walk down the crooked path has been fun, though. Thank you for joining me!
Today’s blog post is the final post 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.