Walk a Crooked Path: Be Prepared!

By Saundra Stewart

I have a pet peeve. Okay, I have more than one, but I’m only going to mention one today! I am irritated to no end to walk into a public place and not be able to find a “family” restroom. I was grateful when our pastors built our new sanctuary that they thought it wise to include a family restroom in the plans. Why? If you’re caring for a person who is totally incapable of caring for him/herself, it’s often necessary to help them with their bathroom needs. It was such a relief to be able to take Don into the restroom and help him use the urinal or whatever else he needed to take care of. He certainly wasn’t comfortable going into the ladies’ restroom to potty, and I was equally uncomfortable going into the men’s bathroom to help him!

Don was a man’s man. He was so intent on jogging that he would jog to work, then jog back home after work was ended. He loved riding motorcycles (dirt bikes, especially), playing racquetball and softball, and getting out in the yard to play soccer or basketball with the grandkids.  With all those manly hobbies, though, his favorite thing in the whole wide world was sitting down with a group of cronies and playing bluegrass on his five-string banjo. As ALS began to slowly take over his body, I saw those things he loved drop off, one by one. He began to fall (foot drop), so it became necessary to use a walker or scooter. No more soccer with the kids in the yard. He would sit and watch them play, but it just wasn’t the same.

All too soon, the day came when he could no longer finger the five-string banjo that he loved playing so much. He told me to put it in the case, because he was done. A couple weeks later, he thought maybe he was strong enough to play after all, so he asked me to go get his instrument out of the case. I brought it to him and put it on his lap. He couldn’t even lift his arm to get in position to strum the strings. Also, he could no longer hold his arm up and position his fingers to make the chords. His banjo-picking days were officially over.

Little by little, everything Don had loved spending time doing seemed to be falling by the wayside. That had to be a major adjustment for him, because he had been a very active guy. We needed to find other things for him to enjoy. 

He was no longer able to go outside and play sports with the kids, but he could spend countless hours talking to them and encouraging them at what they were doing. He would take them out to the garage and give them some boards, a hammer and a few nails. They would turn out a project that was always special to granny and pa. Don was no longer able to take part in sports, but we cheered on the grandkids while they played softball, hockey or competed in cheerleading competitions. Not the same, of course. But certainly better than sitting at home feeling sorry for ourselves!

I found all kinds of banjo pickers on YouTube, and Don found some he especially enjoyed. His bluegrass buddies continued to come over from time to time and pick and grin. The first Monday night of the month, a group of musicians (mostly bluegrass) had made a tradition of getting together at Culver’s to play and sing. Don could no longer take an active part, but, for a while at least, he enjoyed going and showing his support.

As I saw things that Don loved falling away, one by one, I tried to find things to fill the empty spots. Don loved company, and we encouraged people to come by. Even after he was no longer able to hold up his end of a conversation, he loved listening. His older brother was great at telling stories from their childhood adventures. A lot of times, Don wouldn’t remember the incident, but Jim remembered every detail. What stories he would tell! His younger brother, Tom, sat with him on Sunday mornings, and he was always sharing details about some project he was working on. Always considerate enough to ask for Don’s input.

ALS takes so much from its victim. It’s important to be imaginative and creative. Don’t let life become a mundane, boring trial. Find areas of fun and laughter. Don’t be afraid to explore new avenues of adventure.  Certainly, not everything you try will be a hit, but you’re bound to happen upon things that you can enjoy with your patient, even when they can no longer take an active part.

It’s important to think ahead. Be prepared. Just as you see your loved one become more and more limited in their ability to move and be self-sufficient, you plan ahead and prepare for those pieces of equipment that will make life easier for both of you. The hoyer, the gantry, the powerchair, the hospital bed. So many aids. In the same way, plan ahead for your loved one’s spare time. Bring in friends who will talk about “the good old days” and things that you both enjoyed. Find YouTube clips that show areas of expertise that your patient spent time doing. Like music?  Find lots of it to play in those all-too-quiet times. Like movies? Do your research and find things to entertain you in those boring hours in the evening. Family pictures are especially enjoyable. Share them together.           

It’s up to you to make life the best it can be. Get those creative juices flowing!  Prepare yourself to have fun!

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.

For more information on resources available to caregivers of loved ones with ALS, please visit www.alsa-stl.org.

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