Alzheimer’s, as with any debilitating disease, generally will bring new challenges and/or problems almost daily. And when those challenges or problems arise, it is most often left for the caregiver to find a way to cope with the issue.
As an example, my husband who was then about half way through the middle stage of the disease, began not wanting to get into the shower. After several days when I had to practically force him to get into the shower and then, while watching him closely, it occurred to me what was causing his behavior. It was simple really…..he no longer knew how to turn the water on nor how to adjust the water temperature!
After thinking hard about how I might resolve the problem, it made sense to me to have him get into the shower before the water was turned on and then I could reach in, turn the water on and adjust the temperature for him.
Of course it was pretty obvious that I was helping him and I felt uncomfortable doing it. I also felt like I needed to explain why I was doing it and didn’t feel that was something I could do. I didn’t want him to know that I had noticed he was having a problem.
So I simplified it by getting into the shower first and then when I stepped out, I left the water on for him. That seemed to work better for a while. However, it became increasingly difficult to get him to step into the shower regardless of my efforts. I then started getting into the shower with him but he would stand back away from the water and only move to stand under it when I coaxed him and even then, he would move away quickly, hardly giving me time to rinse the soap off of him.
One day he really tried to step into the shower without my coaxing but would back away each time he tried. When I encourage him to get in, he looked up at the water coming out of the shower head then looked back at me and said, “I’m afraid it’s going to just cut me to ribbons”. I held his robe for him and we turned away; there would be no shower today.
That just broke my heart! My 6 foot 1 inch, 225 pound hard working, strong, athletic husband was feeling a fear so intense that he couldn’t overcome it. I had to turn away so he wouldn’t see my despair.
Now that I knew it was fear causing his hesitancy and not wanting to subject him to that fear any more than necessary, I suggested that I give him a sponge bath. We tried it but it didn’t work out well as he would became agitated sitting in the chair while I washed him.
This was when I learned “Care Giver’s Rule #2” which is to accept the challenge or problem that has presented itself and then to look for, and find, a workable solution. Since the disease had made him unable to come into my world, I must now go into his.
At this point I still didn’t fully recognize I was functioning in a care giver’s role. We still had many good days, hours when we enjoyed a good laugh, a tall drink while we sat in our gazebo just talking and enjoying being together. We even had some conversations that weren’t too far away from what might be considered normal. We made plans for the future and that was difficult for me because I knew in my heart that the things we planned would not be in the future that surely would be ours.
But for now my goal was to help him get along in life, to make things easier for him and to hopefully give him some joy. I wanted him to feel that he was still the man of the house, my protector, my security.
I also wanted and needed to take care of him!
Care Giving - Risks & Rewards 