Posted 23 February 2011 - 04:53 PM
Ooops... Seems I posted my missive before I was quite done.
Anyway, to finish up, here's where I at emotionally, and here's where I would love some feedback. Just a quick line from anyone who is a caregiver or a PWP to just say they get it. My friends just don't understand. In fact, when they see DH, it's usually when he's at his best -- he's on his meds, he's had a fair amount of caffeine (which he uses to self-medicate), he's loose and walking okay -- and so they all tell me after the fact, "Oh, I saw your husband yesterday and he looked great!" And then I think to myself, "What are you talking about? He fell down last night, he's crashing into walls and furniture all the time, I can't understand him when he talks, and he literally falls backwards into a chair when he sits down. Plus, he left the stove on twice in the past week." It's almost as if I am wearing a blue sweater, and people keep coming up to me and saying, "Annette, that is a really pretty red sweater," or "Red is your color -- love the sweater" and I'm looking in the mirror and seeing blue. In other words, I see one thing, which is DH at home, especially in the mornings and evenings, and the world sees something else, which is DH at his best midday, and so what they report and what I see are two entirely different things.
Fortunately -- and thank my lucky stars for this -- I have a very close friend who is a psychologist. And -- get this! -- she works primarily with PWP and patients with Alzheimers, as well as their families. Currently in her private practice she treats six different families who are dealing with PD. So that means that she does indeed get what is going on. But, she said to me over the weekend, "Annette, I cannot be your support group." This is because I always call her every time something happens or I'm feeling crazy or whatever, and I now realize it's not really fair to her to be calling on her professional expertise when she's just a friend and when there are other resources available.
So the other thing that is going on is this issue of whether I should stop working or not. There's not any one thing I can point to, but I just want to be home. I want to be home when my boys get home from school so that they can have one "normal" parent around. I want to keep an eye on things because DH, who is still driving and doing much of the shopping still, is getting more forgetful and, frankly, I don't know how much longer he'll be able to drive. I don't think he'll need to quit tomorrow, but his next test with the DMV is September.
Finally, I am really worried about how bad DH's fenestrated walk has gotten, especially in the mornings and the evenings. (Oh, on a totally different note, I forgot to mention that DH does NOT have any sign of a tremor yet. Just bradykinesia, fenestrated walk, memory stuff, stiffness and balance problems.) And we have all four bedrooms upstairs. He almost fell down the stairs last week while just walking in the upstairs hallway, because he couldn't stop himself. So that's the other thing I'm grappling with -- do we move to a single level home? Do we put up a baby gate?
And what do I do about my kids? I try to talk to them about it, to broach the topic and let them know that they can talk to me anytime they want. However, they always say, "Mom, you always try to talk to us about this. Nothing is wrong. Dad seems fine. What are you talking about?" These comments, naturally, make me feel crazier still (back to the old blue sweater / red sweater metaphor).
Anyway, sorry for prattling on so long, but if anyone has feedback, even if it's just "I get it" or "Hang in there, girl" I will be appreciative.
Oh and one final (and I do mean final this time) question: Does anyone attend a PD support group in their community? I see that there are two fairly close to my home in Orange County, CA. I'm wondering what feedback folks have with respect to attending these.