At my first retail job I remember getting reprimanded by my boss because I used the term “that sucks” with a customer who had told me some story with an unfortunate ending. Ever since that time, I have known how crass that phrase sounds and I try not to use it. However, there are times in life where this is the only phrase that can capture what someone is going through.
So, what I have to say today is “dementia sucks” and often everything associated with it sucks. Who taught me that? My Mom. My Mom, who is always proper and well spoken says it sucks. I love when she does that, when she is totally honest about what is going on.
Mom has been extremely fatigued for the past few years, and the fatigue is getting worse. On most days Mom is up for a few hours in the morning, sleeps all day, and is up again from late afternoon until after dinner. She is SO tired. Today she asked me what could be making her so tired, and I said it is just part of the disease, to which she replied “that sucks!”
I hate that so much of the dementia and parkinsonism is just something we can not change or make better. We can’t give her medicine to make her less tired (trust me, we have tried.) No medicine completely gets rid of the tremors, medication has not helped her memory or cognition. The random back pain and other skeletal discomforts, which we have now learned are common in parkinsonism, can not be stopped. For the most part, we just can’t fix any of it, and all we can do is manage it.
Management means that most days Mom will sleep all day. Exercise and diet do help with cognition and the Parkinson’s tremors, so we try to keep up with that. Mom tries to socialize because that is fun for her and decreases depression. We repeat things for her and help her find the words she can not remember. We manage the best we can because in the end, dementia sucks and there is not much we can do about it. Well, at least we can be honest with each other and laugh about it when we can.