Tuesday, January 1, 2008

Caregivers Unite! But Is It Really For Me?

I have come to the conclusion that the caregivers online forum I am a member of is just not for me. Now don't get me wrong - it is a wonderful site with lots of nice, interesting and very supportive people. But I just don't fit in.

First of all, I am not actually a caregiver yet. I mean, Keith can still function perfectly, so I am not exactly caring for him in the typical caregiver sense, know what I mean? To continue in such a forum would be a bit insulting to Keith. Second, I am the youngest one there and have really nothing in common with anyone else. Let's face it, Keith is considered "young onset" to have PD. 90% of PD sufferers are in their late 60's or older. Most of the people on the forum are elderly caretakers whose spouse has PD, or they are middle aged people taking care of their elderly parents. Not really my peers at all. And third, it's a bit of a bummer. Actually, it's a HUGE bummer to be on that site. I went there looking for support - a shoulder to cry on, a little bit of what to expect in the future, maybe a tip or two on how to get Keith more motivated to care of his health. What I got was one sob story after another from angry, bitter family members. One lady went so far as to say that had she known her husband would end up [with PD] then she never would have married him to begin with. That, in my honest opinion, is just a horrible thing to say. Now I know these people have a lot on their plates. I know that they are likely burnt out, but jeez lady!

So I've taken a permanent vacation from the Parkinson's Disease Caregivers Online Forum. Hopefully I will never find myself at home there.

3 comments:

Dirty Butter said...

May I suggest that you both join Patients Like Me, you as a caregiver and hubby as the patient. You will find folks there with Early Onset, and some close to your own age. Of course most are older, but I don't think you will find the forum to be at all depressing.

Mary said...

You amaze me . . .Thanks again! Will do.

One Life said...

Mary...

I have been on that forum too! I had exactly the same experience. I tried posting there a couple days ago in a moment of weakness, and got more of the same. (all along the lines of "you should have known what you were getting into... we told you life was going to be horrible and you'd regret it)

It breaks my heart...

Michelle