Yet Another Adjustment

What would it feel like to be an intelligent, independent adult and have people constantly telling you what to do? The best word that comes to mind and describes such a situation is “sucky”. Another and probably more appropriate word would be “humiliating”. It would be absolutely humiliating, frustrating and embarrassing to know that the people around you, the people who are supposed to love you the most find you incompetent. They find you so incompetent that they are constantly telling you the most ridiculous things like “throw away your tissue” and “wash your hands”.

I recently read a book called “Still Alice” about a neuropsychologist who is diagnosed with early onset Alzheimer’s. If I remember correctly, the author wrote the book from the perspective of Alice, the main character who is afflicted with the disease. I believe it takes place over one year and shows a fairly fast decline. The author did a nice job sharing what it might be like for someone who is going through the process of losing their cognitive abilities. However, the author did not portray Alice as particularly resistant and angry about what was happening and the ways in which people respond to her. I think that would be a helpful bit of knowledge for those of us who are trying to care for someone struggling with this disease.

The nice thing about spending time with Alma is that she is able to articulate her frustrations in various ways much of the time. Her candor is an important reminder that she once was a perfectly capable, strong and very smart woman. The sad thing is that when I am in the mindset that things need to get done, I often disregard her need for respect, patience and tolerance. I have mentioned autonomy in the past but sadly, we are way beyond the ability to allow her much independence at this point.  Therefore, this balancing act has become quite difficult.

I have become acutely aware that it is vital to acknowledge that outside stimulation may cause increased agitation and difficult mood swings. Simply put, it seems that taking her shopping, to a restaurant or even out for a walk in the neighborhood is incredibly stressful for Alma. After she had a loud meltdown at Target last week, I realized that we need to make yet another adjustment to out routine at home. I have been reluctant to cease taking her places because I was convinced that it was “good for her” to be out. Clearly, I was wrong. I am learning (slowly) that it is important to keep things as quiet, calm and routine as possible. Sadly, I’m not sure how much more our family can adjust to create the environment for her that she needs. As much as we would love for her to be with us, we are realizing that a memory facility will be able to give her the structure and routine that she needs to reduce stress. We plan to begin looking at some different facilities in the area and will keep everyone posted on our progress.