Not minutes - just an overview of general conversation plus a few of my own thoughts. Conversation was mostly upbeat, a LOT of talking, trying to catch up. The summer was too long to be away from this group - the group that actually "gets it". Some of the bits below are from the meetings conversation, some just going through my head...the thing is people are talking and I think…I wish I were that calm, or my god, I would have lost it! Everyone kind of doubts themselves I think – certainly I do. I just feel so damn inadequate….
“Do you remember the name of the actor…..” oops, why would I ask him that? Put him on the spot like that? At home he always wants to help. Great, should be encouraged but what actually happens is “yes, in the cupboard, no that cupboard, no that shelf - you know the same cupboard its been in for the last 12 years….” well that was just ignorant! A lot of tongue biting going on, sometimes not enough. It’s the same things over and over and I lose my patience and just step in and do it, or ignore it or make a snap comment. Frustration levels increasing? Oh, yea, all around. Partners confused, agitated, angry, losing control of little things and big things.
A couple of the partners are in full time care. But the work and the stress has not gone away! It’s just different. Taking a partner “out” whether just for a couple of hours or for a longer period of time presents some different challenges. We all need to talk more about this, everyone will be facing this.
The reality is that my partner didn’t retire, they lost their job and so the need to make money is real. But when I got home partner
· Took the dishwasher completely apart and then couldn’t put it back together
· Washed clothes, as he does EVERY DAY, the SAME clothes. EVERY DAY.
· Is watering in the yard. AGAIN. Some plants are parched, others are drowning. I love to garden and am very annoyed. I have put a lot of effort into the yard and he is wrecking it.
· She has been crying. Again. I think she cries a lot.
Telling friends and co workers.
· At work, they walk on eggshells around me and I feel like they are trying to avoid giving me work that is demanding/stressful – like my plate is full enough. It is full, but different – work is a break from my life at home. I want the challenge, I want to put my time/energy and mind to something different than Alzheimers which consumes every other hour in my day. I don’t have Alzheimers. I can do my job.
· Yes he has Alzheimers but he and WE still like to hike, go out for wings and beer, go to a concert. If we can’t go I will say so but I wish my friends and family would still include us. He still has feelings and SO DO I.
· do you think they know how much we do for them? how much we give up? NOPE, really it is just all about them.
General agreement: # 1 issue – a REAL day program. Not one set up for people in the 80s and in wheelchairs. One for people who need some help but still want to contribute, be active. The following have been approached and need to be contacted more: Calgary Family Services, AB Health Rec Therapy, Garrison Green - all agreed we need a day program in Calgary. Some discussion that this may be the one thing people need to focus on as it is a worry for everyone.
Another meeting I want to talk about family expectations – what they expect of us and what we expect of them. How surprised we always are when it turns out we are on a WAY different wavelength. I am doing the best I can, I don’t think I ask family to do very much and then….guess what? I’m not doing what THEY need.
Talk was good, like people wanted to share, but also just seemed to be glad to be here. Perhaps discussion should focus on “burning issues” but the summer has been long and I felt that some just wanted to feel the security of the group, to connect again and know we are not alone.