I think we may have taken another step backward in our progression in my husband’s disease. Although it was a struggle, Wayne, my husband, up until recently has made his transfers from the wheelchair to the toilet and from the wheelchair to bed successfully by himself.

We seem to now be transitioning into him needing my assistance in getting into bed at night. I have laid out his clothes for him for a long time, but he also seems to need some night time help with that also. We are adjusting to working together to get him in bed in the evening. That is not the most difficult part. The most difficult part is adjusting to a new “normal.” It is realizing that we are taking another step back.

My husband, Wayne, also has been very slow in making the next move of late. When he moves in his wheelchair for example it is at a super slow snail pace. I watched him butter his bread today, and it was laboriously slow. He has been slow in his movements for awhile, but this is ridiculous. Sometimes I wonder if this is a temporary glitch, but it seems as if the brain is having a problem conveying the message to his body to take the next action. This means me having to prompt him so much each step of the way.

Last winter I went out a few times with a group of ladies to some concerts. At that time although I worried about Wayne some, I felt as if it was okay to leave Wayne for the evening. He could successfully makes the transitions to bed himself. I had bought tickets for the new concert series starting this coming fall and was planning on going along with my friends to these concerts again. Now with this latest development I am wondering if this will work.

I did see the name and number of someone advertising caregiving services this week in our local ad paper, however. I did talk to this woman on the telephone, and I may start by using her services for these nights when I want to leave for a few hours. We both need to talk face to face, and we both need to discover if this is a good fit first. I think I need these few hours away in the evening once in awhile, but I also need to have my husband’s needs addressed. It could be a little pricey doing this this way, but we will see.

I also made work yesterday contacting the Scooter Store to try and get Wayne a motorized power chair. Wayne is on Medicare and a Supplement finally as of May 1rst. I talked to the Scooter Store via phone, and they were so nice and so helpful. It appears as if Wayne will get one of these free of charge soon. Wayne has a doctor appointment Tuesday, and hopefully after the doctor faxes info to them we will have a chair in a few days.

Do I think for one second that this woman “just happened” to have her caregiving services advertised at the exact time that I was wondering what to do next? Do I think that it “just happened” that the motorized wheelchair will be available just at the time when it is apparent that we need it?

Not for a moment. I think I am being guided step by step. So do I like what the future likely holds for my husband and I in regards to the progression of his disease. No, I hate it! I hate this adjusting to new norms which are constantly downward. Do I fear the future? Yes, sometimes. This is a terrible disease. When I am afraid or angry or discouraged, however, I remember who holds my future.

Share