Before my mother got ill, the word progress had positive connotations with me. When I get my children’s progress report from school, its to show me how far they have come or where they need to go. When my son has progressed in his soccer skills, it refers to him getting better. Progress or progression in Alzheimer’s and FTD do not provide comfort to the patient or those around them. It has almost the opposite effect.
My Moms disease has progressed slowly and intermittently over the years.It was so slow in the beginning, that we did not even realize she wasn’t well. Since January, we have seen a steady progression in my Mom and the disease. Words are harder to find, she has had a few (far between) tolieting accidents, her personal hygiene is starting to wane. I try not to look at it as a day by day, but rather week to week. By doing so, I can judge a greater amount of time to see if there has been a difference. We keep hoping for a plateau. A place for my Mom to sit for a while, before more things go. In six months, we have not had one plateau. To say it’s disappointing would be an understatement.
You know when you get a new piece of furniture and you have to put it together? Many brands give you detailed written instructions. You follow each step, refer back to photos and written word until eventually your furniture is built! That is not what happens when you get a piece of furniture at Ikea. There is a manual included, but its like playing Pictionary. Black line drawn pictures for each part, with arrows telling you which way to go. You have to figure out through trial an error that its the short plastic screw that goes in, not the longer metal screw. It usually takes longer than expected to put a simple piece of furniture together. While doing so, there is plenty of frustration to go around. That sums up Alzheimer’s.
Many days I feel like I am playing Pictionary or Charades with my Mom. She is searching for words and I am calling out (often in my head), “blanket, bed, … ” to fill in the blank. There is no manual that tells me what steps to take next, which “screw” is the right one. Sometimes full pages of the “manual” are missing. We have to guess and guess and through trial and error still have a 50/50 shot that we get it right. Each time there is something to put together with my Mom it’s a different “manual.” You never know what you are going to get with Mom and you need manuals or guidance through out the day. So for the person “building” the furniture it is frustrating, for the person assisting with the build it’s devastating to never get it put together the way it once was.
As much as I search for answers to the daily and ever changing questions I have with my Mom, I can’t find them. I realize that it is in part due to the fact that there is not one answer. An answer that would fit today, may not next week or may not even fit the same from morning to night. For now, I will keep searching for answers and hope to be able to put it together.