Hard truth…

[ music | Depeche Mode – Policy of truth ]

I’m a little tired of ignoring a rather large elephant in my room here, so this is me acknowledging an elephant you in all likelihood didn’t see. However, I do, and I want rid of it. So I’m going to partake in the typical self-indulgent blog post. I don’t want pity, I just don’t want to pretend there’s nothing wrong anymore.

At the age of 28, I officially became the caretaker of a parent with dementia. If that seems a little young, it is, because the parent is definitely on the young side of the bell curve of dementia patients. And as often the case, I’d been a caretaker for several years before the disease was actually diagnosed. It’s amazing how effective we can be at lying to ourselves and avoiding conclusions we want to avoid. I was so good at it I made a complete ass of myself to several people for about six months at the end of 2005 and the start of 2006.

At the start of May 2006, things devolved to an untenable state, and an ultimatum was issued. Either my mother checked herself into the hospital to determine what’s going on, or I would. In a wonderful turn of real life melodrama, my statement was, “I’d rather have you hate me and be well than love me and be sick. One way or another, this is going to happen, today.” She checked herself in, and within a week, we had the diagnosis.

Dementia is a spectrum of diseases rather than a single specific one, with the most commonly known type being Alzheimer’s disease. Dementia tends to describe the condition of the patient and symptoms rather than the cause. She doesn’t have Alzheimer’s, nor does there seem to be any easily recognizable gross organic defect like what you see in Alzheimer’s, Parkinson’s, or Dementia with Lewy Bodies.

She was started on several medications immediately, two of which I cannot speak highly enough. Aricept and Namenda. Her reaction to these was rapid and incredibly positive, far more than one would expect reading the literature. Within a few weeks she was significantly more lucid and coherent, and far more capable than she had been in quite a while. She wasn’t perfect, but in these situations, you’ll take 80% of normal when you can get it. For roughly a year things went so much better. For that year I an unable to express my gratitude.

However, about two months ago, things started to decline again, with alarming rapidity. Last week we went back to the doctor after only having a check-up three months ago. We tried some adjustments to the meds, and things looked to improve a little. Until Thursday. Without unnecessarily delving into detail, I was forced to hospitalize her again to see if we could see what was going wrong now. It’s somewhat of a crisis, and things have never been this bad before. Things were actually quite fine Wednesday, we enjoyed the local fireworks display. I don’t know what changed, and I don’t know where things will go from here. We’ll see shortly I assume. There’s a meeting tentatively scheduled Monday with the doctors at the hospital.

I’m saying this because I need to unload, and to stop acting like this stressor doesn’t exist. I’m also saying this to remind people of the old saying, “Life is what happens to you while you’re busy making other plans.” It’s rather prophetic that John Lennon said that the year he died. Three dear friends lost parents of their own recently. One’s father died of heart disease, another’s mother to ovarian cancer, and one just a month ago lost both to a car crash. My situation is by no means unique or unusual.

I never had a good relationship with my father, but I love my mother dearly. If you got along with one or both parents, pick up the phone, talk to them, tell them you love them, whatever. But cherish whatever time you have with them, your siblings, your kids, your friends. Life is far too short, and goes by far too fast. It’s like falling from a cliff at night: it’s exhilarating, it’s scary, and you never see the end coming. Enjoy it while you can. Every day can be the most wonderful gift in the universe.

Just don’t get caught making plans.

2 Comments

  1. Martin Turown had this to say,

    July 7, 2007 @ 5:55 pm

    Dementia is a frightening thing. When you really think about it,it is the worst possible disease because it deprives of us of us. That is, we are our memories and once we lose that, we essentially lose ourselves. I’ve been reading that mental activity might help to stave off memory loss. But at certain point, it is all neurochemical and right now, there is only so much that can be done except be there, as you are doing.

  2. Rochelle had this to say,

    July 9, 2007 @ 7:36 pm

    Grey, I’m sorry to hear you’re going through this. I hope you’ll get the support that can be so helpful in this time. I went through this with my great-grandma, and it was very hard…my heart goes out to you. I commend your advice to cherish the ones you love, and to talk to them…being present and mindful of our gifts makes them so much more poignant.