Today’s blog post is the first installment 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.
By Saundra Stewart
Ever heard of Lou Gehrig? I can remember my dad, an avid baseball fan, talking about Mr. Gehrig when I was just a kid. Because Dad liked him, I made it my business to like him, too. I read books, I watched movies, I educated myself — especially about the odd illness that Lou Gehrig came down with: Amyotrophic Lateral Sclerosis — ALS. What a long name, and what a devastating disease.
At the age of 70 or 71, my dad began to experience foot drop and weakness in his legs, arms and hands. To say I recognized the symptoms right off would be a bit off target, but, as things began to worsen, those dreaded letters, ALS, creeped into occasional conversations. Dad’s doctor was, apparently, less educated about the disease than we were. It didn’t help any that my dad was a positive, relatively easy-going guy. When the doctor would ask Dad how he was doing, Dad would always say he was doing great. But he wasn’t. We kids were taking turns spending the night at their house so we could take care of him during the night to give Mom a break. Since he had not been officially diagnosed, they had no access to outside equipment or any of the other things they so desperately needed. So we managed by doing everything physically possible to make life easier for him.
One evening a home healthcare nurse paid Mom and Dad a visit. As she was leaving, I said, “Do you have any idea what’s wrong with my dad?” She said, “I would almost certainly say he has ALS. Has no one told you that?” No. We had not been given any name for what was happening to my dad. Mom finally had to put Dad in the hospital, because he was having such problems breathing. Four days before he passed away, the doctor called in a neurologist, who confirmed our worst fears. Dad was dying of ALS. He passed away that week, after suffering from this “unknown” illness for at least four, and maybe, five years.
Fast forward about six years. We had moved on with life. My sweet husband and I had five wonderful grandkids — the first, a grandson, was about eight years old when we were blessed with triplet girls, followed two years later by another boy. Don and I loved keeping the kids over the weekend. We would keep the younger four to allow our son and his wife to spend exclusive time with the oldest child, and to give them a bit of a respite. Don was the outside guy. He played basketball, soccer and lots of outdoor games with them. I taught them to embroider, crochet and sew. We watched lots of movies. We took scores of long bicycle rides. Life was good. We were enjoying every minute of it.
Don had taken classes for heating and air-conditioning, and had picked that up as a side job. He was on a job one day that required him to hoist himself up into an attic through a trap door in the ceiling. That had never been a problem before, but he simply didn’t have the strength to do it that day. When he came home from the job, he said, “I don’t know what happened, but I just got old overnight!” He was 64.
That summer, Don and I took a trip to Silver Dollar City. While we were there, I noticed that he seemed to be walking very pigeon-toed. I mentioned it to him, but he insisted it was just my imagination. Soon after, when he would be playing with the kids, he started tripping and falling. He couldn’t stop the ball when he was goaltending at soccer, and they began to score on him. What was going on? Don certainly couldn’t have the same illness that we had seen my dad deal with a few short years before. That’s just too ironic.
Don’s body seemed to be playing tricks on him. We were concerned enough that we made an appointment with our general practitioner. He could tell there was a problem. After checking Don out, he concluded that it might be a back issue and sent us to a neurological surgeon. The surgeon did tests and decided it wasn’t a back issue at all. He sent us to a neurologist.
Don and I had seen enough and knew enough about ALS to be concerned. Our fears were put on the back burner, though, because soon after seeing the neurologist and being told that they were suspecting ALS, Don got shingles on his face and head. It was awful. They went into his left eye, and his vision was greatly impaired, resulting in a thickened retina and vision problems for the rest of his life. Blood work during this time seemd to indicate that the problem might be myasthenia gravis and not ALS at all. Once again, I put on my research hat and found out everything I could about that illness. As bad as it might be, it didn’t seem to be as bad as ALS. One thing I noticed in my reading was that MG plateaus. ALS does not. The doctors suggested that Don undergo a thymectomy to remove his thymus. That surgery was supposed to help people suffering from MG. We, stupidly, jumped in with both feet. They cracked Don’s chest and removed his thymus. Unfortunately, there was no improvement in his condition following that very major surgery. In fact, he continued to digress.
What was going on? Don certainly couldn’t have the same illness that we had seen my dad deal with a few short years before. That’s just too ironic.
After a year of indecision, they finally told us that Don had never had MG, it had been ALS all along. We were referred to the ALS Clinic. Initially, we were told that Don was digressing unusually fast, and his life expectancy was placed at about 2 1/2 years (and that included the year we had already endured having the wrong diagnosis). But, they just didn’t know my Don! I had a purpose. I became a dedicated caregiver to my precious man. I educated myself, and the ALS Association was kind enough to put their people and equipment at my disposal. We began the fight of our lives.
I became Don’s advocate in every sense of the word. I questioned the doctors, I watched the nurses, I was careful to oversee what was going on each time we had to take him to the ER, I educated anyone who was going to stay with him for even a few hours. I felt that God had entrusted Don to my care, and he was my ministry and mission. Don and I had always been close, but we became glued to each other. He never lost his positive and joyful attitude. He became stronger and stronger in his faith in God. We believe Heaven is the after-death home of those who have received Jesus Christ as Savior and Lord of their lives, and Don was looking, almost eagerly, to that promise.
Don lived 11 years with ALS, maybe a bit longer. Certainly a lot longer than the 2 1/2 years they initially thought he would have. So many wonderful things came to us from having gone through this battle together. I’m thankful that both Don and I decided early on that there were life lessons we were supposed to be learning, and we purposed to learn those lessons well. My sweet husband is gone from me, but it’s my intention to let what I learned during his illness be a beacon to help others navigate the waters of this frightening and uncertain voyage called ALS.
Together, we can do this! May I help you?