Today I decided that dementia SUCKS. I’m a social worker, I don’t do social work (well, technically I do) but every part of my being believes in the social work values. That’s why I became one. Today one of those core fundamental values was put to the test. It was not something I could separate myself from because my mother suffers from dementia.
For the most part, it’s been little nuances that made me realize then she was losing part of her mind. Like calling my children or me by other people’s name and not correcting it. (The youngest of five I am used to four names coming before my own name). Or repeating the same thing over and over and over again. Asking the same question, telling the same story. When I take her to the doctor she will sometimes answer questions wrong. I just chalked it up to forgetting or well old age. I have been able to correct it and go on or ignore it.
Today my mom was brought to the emergency room. I got the phone call from the facility nurse, as I typically I would take her myself . I was at work and so I went downstairs at the hospital that I work to be with my mother in the emergency room. She was there because she was has a foot infection and it was causing great pain when she put pressure on her feet. However, my mother also suffers from congestive heart failure, coronary artery disease, and a multiple other things. Her issues are noticeable most of the time as she has a hard time catching her breath.
Most of her emergency room doctor visits have centered around her heart problems, for which she is currently under palliative care. She has decided to try to maintain her functioning, but is not aggressively treating with surgeries. However, until the doctors get into the chart and read the notes, they are going to focus on her noticeable shortness of breath. The questions from the nurse and doctor centered on that, and with the power of suggestion, she remembers activities that lead to previous emergency room visits. She speaks nothing about the pain in her foot. Instead she was at the emergency room regurgitating the facts of an emergency room visit almost a year ago as if they are current.
I had to explain over her, feeling like a witch as she appears to struggle for air and that is the doctor’s focus,that she does not need a cardiac workup because there is nothing more that will be done to improve that, only make her comfortable. I continue that the facility called me the day before to say she needs to go to the doctor. We had a scheduled appointment for today in the afternoon. Then because the pain was so bad, they sent her to the emergency room. I had to sit there and speak over my mom so that she could get the care that she needed and not receive a multitude of tests that will change nothing.
As much as possible I try to let my mother drive her care. If she is alert and oriented I want her to make decisions for herself. I want to empower her to maintain her independence as much as possible. There are things that I have to take care of all the time like her financial spending and appointments. She has someone who monitors her hygiene, personal and environment, cooks, and manages her medication.
But today just sucked. Dementia sucks. It is so hard to see someone who you once thought knew everything, not even be cognizant of the pain in her own body. To remember the lady who once was and see the shell of the person slowly fading away. It is hard to want to go to the only parent you have left, and know that she may or may not remember it. It is hard to have a meaningful conversation and know that moments later it might be forgot. It is hard to want to pull every memory that you can so that they can be passed on after she is gone. Today I realized that I really miss my mom being able to be my mom. That is why dementia sucks.