One of the saddest things I have noticed about my mom’s dementia is the loss of self-identity as a person. We all deal with loss and stress differently. Some of us flee; some of us fight—my mom fights.
I do not mean the following as an indication that my mom was a negative person. As I’ve said, we all deal with stress differently. If I were confronted with confusion and dementia, how would I deal with this obstacle? As I know myself, I would flee. As I’ve gotten to know my mother more during this time, I refuse to believe that my mother’s choice in life to be a “fighter” is any better or any worse than mine of a “flee-er.” We both have lived our lives as best we could.
As mom’s short-term memory deteriorates, I know she notices these changes. She is probably frightened and wonders how bad it will get. She is probably thinking about how others will judge her and has decreased self-esteem. She is perhaps angry and asks, “Why is this happening to me?” It is a time of loss and stress for her.
As her caretaker, this has been a time of loss and stress for me. My mother resides at an independent senior living facility where they offer dining, medication assistance, and housekeeping services. When the signs of early-onset dementia started, I suggested the one meal dining option but insisted on the daily medication distribution. (She had mentioned that she was confused about filled her weekly pillbox.) Her last lab work had suspected that she was not getting the proper nutrition, and I thought it would be a good idea to get at least one prepared meal. However, because my mother is a very private person, I could not convince her about housekeeping services.
As the months passed, I noticed that she always did daily housekeeping, but things like vacuuming and general maintenance cleaning were not. I wanted to keep my mom in her independent apartment but worried that she might need to move to an assisted living apartment where she would have no choice about the housekeeping. I talked to the facility representative about the cost of housekeeping. Since it was reasonably priced and not invasive to her privacy, I told the rep that I needed to talk to mom about it first and schedule the services for the next month.
Then all hell broke loose. The next day, the rep saw my mother in the hallway and told her that she would get the housekeeping services. Since mom is a fighter, she was instantly upset. She called me that night. “I thought you told me that we were not going to get the housekeeping! (betrayal) I’m not happy with the medication service since they wait until I’ve gone to bed and wake me up too early in the morning! As far as the housekeeping, I’ve heard that they don’t even move the furniture to vacuum and don’t do a good job cleaning! You must think that I live in a filthy apartment if you asked for people to come into my home to clean!
My mother has now discontinued the daily meals, has notified the management that she will never be interested in the housekeeping services, and complains about medication management services. She insists these are unnecessary because she knows which medications are best for her. The last time I went over to her apartment, she told me to go into her bathroom. “I thought you would appreciate that I cleaned the whole bathroom since you thought it was so filthy.” To make matters worse, her physician had prescribed a “memory” medication, which made her very ill. Since she could not remember that I had told her that she would be receiving this medication, she thinks I purposefully make her sick.
For as long as I have known my mother, the religious part of life has been vital to her. But I can now tell that dementia and her fear are overpowering her spirituality and Christian beliefs. Dementia doesn’t just rob memories of its victims; it devastates friends and family by adding the sad memories of the person living with dementia.
