I was a caregiver for my husband, Wayne, for four and a half years. As I have mentioned before he had a devastating and fast moving rare neurological disease called multiple systems atrophy type c. The last couple years of his life in particular were very difficult.
Through various points in his illness we tried physical therapy. This would seem to help for awhile on a limited basis, but the illness was so powerful that it finally won the battle. Also often while we would be doing therapy Wayne would seem to perk up initially that day, but then he would be so wiped out that all he would do the next day was sleep . Often the transfers were also especially difficult the next day.
In August of 2010 I wrote the following: “So has our life been reduced to therapy three time a week and sleep days in between to recover? It gets a little discouraging. I am trying to remember the blessings tonight, and there are many. I can’t help but feel a little discouraged tonight, however. I don’t think I could handle this, if I did not have my Lord on my side and holding my future. I know there is purpose in all this even though it is sometimes hard to see”
Transfers were also often difficult on other days. He might have a relatively good day one day and a very difficult day the next. One day in August of 2010 I also wrote the following: “I tried to get him to transfer to his recliner chair which is much safer, as it goes way back. Well, that was an ordeal! When he gets really tired, he does not respond to gentle prompts, and I basically had to drag him into the recliner chair. I was afraid he might slip on to the floor. After I got him into the recliner he slept a couple hours plus and was a little better tonight, but he was still spacey.”
About a year and a half before Wayne’s death I also had to begin to thicken Wayne’s liquids. We discovered that Wayne now had to have all of his liquids thickened to nectar consistency to help prevent things from slipping down too fast and getting into his wind pipe and/or lungs. Wayne’s problem was not that he couldn’t swallow, but that liquids sometimes went down too quickly before the flap closed to his wind pipe.
My husband at one time loved to work on the computer. Hoping it would help him I bought a big keys keyboard, but even that did not help him. The disease slowly robbed him of everything he had loved in the past.
When one has a disability and disease like my husband had it changes everything. This was especially clear to me on our last wedding anniversary together. Past years we would have tried to go somewhere special to eat for our anniversary. That year I ordered at a fast food place, and we ate in the car. Because of my husband’s issues and so I can get some sleep, we also each went to our separate beds that night. So our anniversary seemed somewhat symbolic of what was now so different in our relationship. We both loved each other, but it seemed so different from the husband-wife relationship we had once enjoyed.
Yes, there were moments of enjoyment yet during those years. We enjoyed spending time with our children and our grandchildren. We also enjoyed a couple long weekend trips with my siblings, but even those moments were overshadowed to some extent with his disability. These experiences were a wonderful reprieve, but when one returned home reality set in again with full force. There were so many issues with Wayne’s disease that made life a constant struggle.
Living those caregiving years was very difficult. Remembering them also is difficult. Through all the heartache, however, I learned that my hope and help could only be found in the Lord. He was and is a faithful God. Whatever your heartaches turn to the Lord, dear caregiver.
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