As some of you may know, my Mom has been struggling with Alzheimer's Disease for the past several years. For much of my day, I manage to compartmentalize my grief about this but as anybody dealing with a family member with a degenerative or life-threatening illness knows, sometimes the grief surprises you and hits you sideways when you're least expecting it. Today at work, I experienced an intense wave of that grief out of nowhere. I am fine dealing with it, but increasingly I get irritated by the way society expects me to deal with it. I try hard in all circumstances to never feel sorry for myself. I think people who get to this point quickly get insufferable, but I still remain annoyed with the way we're permitted to process grief.
In my family's situation, my Dad is my Mom's near full-time caregiver. She goes to a care facility during the day, four days a week. For the rest of the time, however, my Dad watches her. I guess more than anything, I just want to clear up the perception that Alzheimer's is a disease of forgetting--that somehow memories are the only thing that's lost. Sad as those things may be, the really terrifying punch of the disease is that people forget how to live. My mom can no longer dress herself, bathe herself, feed herself or articulate her needs and wants. I lost my 'Mom' a long time ago. On the bright side, she seems generally happy. And the people that care for her....I get teared up just thinking about them. They are saints who I'm certain make about $10 an hour and give above and beyond to the people they care for. Whenever I have to stay late with a kid at my job or go out of my way to help a teen with a problem, whenever I feel annoyed, I remember those people helping my Mom. The universe evens things out.
In my family's situation, my Dad is my Mom's near full-time caregiver. She goes to a care facility during the day, four days a week. For the rest of the time, however, my Dad watches her. I guess more than anything, I just want to clear up the perception that Alzheimer's is a disease of forgetting--that somehow memories are the only thing that's lost. Sad as those things may be, the really terrifying punch of the disease is that people forget how to live. My mom can no longer dress herself, bathe herself, feed herself or articulate her needs and wants. I lost my 'Mom' a long time ago. On the bright side, she seems generally happy. And the people that care for her....I get teared up just thinking about them. They are saints who I'm certain make about $10 an hour and give above and beyond to the people they care for. Whenever I have to stay late with a kid at my job or go out of my way to help a teen with a problem, whenever I feel annoyed, I remember those people helping my Mom. The universe evens things out.
Like any other disease, Alzheimer's puts a tremendous amount of stress on the family. Stress my Dad feels travels along the line to each one of us. Trips home are not vacations because they're the only time I can offer him a break and watch my Mom. I say this not because I want sympathy but because I want understanding. Today at work, my feelings caught me off guard. With Alzheimer's, there is never an opportune time to grieve. Families lose loved ones day by day, hour by hour. People understand when someone is lost to a sudden illness or accident. When do I get to feel pissed off in the moment? When do I get to shut my office door and cry and feel angry? It may be years before my Mom passes and it becomes "ok" for me to feel sad. In the meantime, I know I am preaching to the choir--all of my friends have been incredibly supportive. Sometimes I just need to say these things out loud.
In conclusion, I hate everything about this post. But I wanted to say it just the same.
