Fitting in - Belonging - Venting

I have been reading posts on various forums. I've posted a few times here and there. I find the forums to be very interesting reading. There are several I read that deal with my locale - city and state. Several others are public forums that deal with Alzheimer's disease and especially caregiving for Alzheimer's patients. Then there are several private blogs I read. Mostly they are by caregivers. I find the Alzheimer's caregiving forums the most interesting and helpful.

Caregiving is isolating. It was more isolating at first than it is now. In the beginning I had no help and was "on" pretty much 24 hours per day and 7 days per week. That went on for several years. Then there was a particular period of sleeplessness and I was in pretty bad shape. That's when I knew I had to get some help and found an aide service. That gave me some much needed time away.

But even before that though I had been telling my children a lot of stuff about what was happening. Finally I realized I was letting off emotional steam to my children and that was really unfair to them. So I stopped doing that. I found an e-mail list that helped a lot for a while.

Now there's no one really with whom I am comfortable sharing my experiences. I don't want to talk about it anymore than necessary for one thing. I only have minutes away. Yesterday I was discussing something and I noticed I told the other person "today I have 90 minutes." That's pretty pathetic when you count time in minutes. Regardless though when I am away, even for a few hours or even a few minutes, I need to really try to be "off." Talking about Alzheimer's and caregiving doesn't help me be off. And it is so deceptively easy to fall into a long discussion about it for me. Someone asks a simple question and I end up giving a soliloquy.

I especially need to be careful when I am with my dearest wife. It is hard for her in so many ways and my choice to be a caregiver is my responsibility and not hers. Plus when I'm with her I want to concentrate on us. That's not so easy sometimes for me. I somehow have to switch off that caregiving mode and switch on the lover, husband, friend mode.

I have so many hats I wear. Well not hats literally of course but roles with separate responsibilities. I don't look very good in hats. That switching of roles is enough stress to last me a lifetime.

I think it is better that my family and friends are spared many of the details of my caregiving life. They all know what I do is hard. It's not really necessary to share all details. I think it is part of the CSI phenomenon. And many people don't want to know too much anyway. I think it brings one's own mortality too close.

Holding emotions in isn't all good either.

So I visit the forums and blogs. I've posted some. But the forums are overwhelmingly populated by women for one thing. That automatically puts me in a radically different group. There are a few men who do post but so far I've not really connected with any of them.

And then I am in year nine. That's pretty long even in the caregiving universe. I'm still caregiving in-home, too. So many at my stage have placed their loved one in a facility. Apparently there's very little that I have not experienced now based on the posts.

Besides all that there are people who usually post really good answers to most initial posts. So, even when I've posted, I usually think my contribution is negligible.

I've been around forums before so I try to avoid the flame war questions. I occasionally disagree over one thing or another but I really don't want to be controversial. I have enough stress without deliberately adding to it.

Any kind of venting on the forums often solicits the advice to "place your loved one in a facility." That advice just adds to my stress. And I'm trying pretty hard to do nothing deliberately to increase my stress.

But reading does make me feel less isolated.

Sometimes I start to post a reply to a post on one of the forums. And first thing I know I've written quite a few words. But then I think "whoa, I've gone way off thread here" and I discard the post. But the funny thing is that just writing without posting seems to be rather cathartic for me. Or I get to the end of my answer and then I think "Really these people don't want to know nor even do they care what I think" so I discard it then.

But I was never a big joiner and I suppose that it is a natural part of my personality.