I know this place is supposed to soothe, unite, support and otherwise care for those affected by issues of caregiving, dementia, etc., but I've always had a difficult time being here. Not that it's a bad place -- it's actually one of the more extraordinarily empathetic sites I've ever read through.
I remember at the beginning, when I first found it -- 'here'. I read for probably two hours that day, devouring it all, getting more and more depressed with each word. I felt so sorry for you all, so sorry that you had it so much worse than we do. My heart broke, I cried tears for many of you -- people I had never met. I closed out the screen that day thinking this would be a daily visit, a touchstone, a source of education and help. But then I stayed away long periods of time after realizing that I was always depressed after having visited. Occasionally I would just drop in via email click because of something in the newsletter that pertained to my concerns, each time invariably leaving the site armed with answers and a heavy heart.
Now that things have changed and are so much worse, I came back again with some desperate hope, I suppose, that *TA-DA!* -- I would be bathed in this wonderful, healing light, this sense of purpose and reason.
I get so frightened reading what will/can/has gone bad. So many answers don't apply to me because I take care of my mom alone. No other family, except distant relatives in Europe. No one she's talked to in more than three decades. I've taken care of her alone for two years now, first at her house next door, now in my own home.
Two people live inside my mom now. The first is the sweet, quiet-as-a-mouse, loving, kind, little ballerina woman with a hilariously surprising sense of humor who raised me. Truly my best friend for the past fifty-five years. The other is the disease: a mean and emotionally abusive, manipulative and difficult woman who yells hurtful insults and tells me she doesn't love me.
I know it's supposed to, but it doesn't comfort me to read that what is tearing my heart out now will get worse. It doesn't bring a sisterhood or kinship to the feeling of being a caregiver. I rarely get through the written words because I can't see anymore. I've thought about it long and hard... is it refusing to face reality? Fear? Is it because reading a clinical article, no matter how precise or well-written, is impersonal and general by it's very virtue, but here -- here, there are real people crying out in real grief and loss?
You know what's weird? I used to read things like that and think, "GEEZ, people, they're not dead!" And before I say that it was in no way meant to imply that anyone with Alz or dementia is dead -- just that the feeling of them "slipping away" right before your eyes is more painful than... a compound fracture, 47 hours of hard labor pains, Marine Corps boot camp... well, ANYTHING. I'm absolutely horrified and embarrassed to admit that I remember how I judged people who said things like that. I'm so sorry.
If this post makes it, it will be a minor miracle. (I've written probably 5-8 but always close the page without posting.)
Why am I here? Why do I keep coming back even though it breaks my heart? Is it because reality hurts? Does this ever happen to anyone else or is it just me?