It really is sad, but once again, we are all in the same boat. Jim has been in the hospital for a month now and only had the infamous visit from his family, one new Alz couple and tomorrow a camper friend asked to go with me. Where have all the people gone...............................
We soon found that we were not fitting in anymore. The worst one was when I called to tell a person that had become like a sister to me for 14 years , about DH' s diagnosis and she said she would call back later as she was on her way to the Dr. And that was over a year and a half ago and I have still not received that call. It can be heart breaking. My DH doesn't want to be part of the couples group that are his support and my support but meet with them as a support group each week and he says that is enough. I have started a once a month lunch at different restaurants around town with my support group but no partners. We just need to be able to talk and enjoy ourselves without the worry of what our DH's or DW's will do or if they will want to leave. It has turned out great and we are getting to know each other and it is so nice to just relax. I realize that as the DH or DW's are no longer in our care that we will move on to the next stage of our lives and that is good and the way it should be but for now it is good!
Ironic how this topic came to the top again, because I was just thinking this morning about my experiences "socializing" yesterday. The only people my DH and I socialize with as a couple are my sister and her husband. We do not belong to a support group - the nearest one is an hour's drive away.
Yesterday I was at a pot luck with some old (pre AD) "friends" of mine. Their lack of understanding was appalling - they said they wanted to know what my DH's symptoms were, and what I was going through, so I started to tell them that I had to remind him a dozen times what we were doing that day, the response was "oh, he has memory issues" and before I got a chance to say anything else, they changed the subject to their travels and their grandchildren (we can't travel very far anymore, and I will never have grandchildren, so I perceived this at the time as another slap in the face). One friend said that she has gone on a special diet to protect her brain - I decided at that point I had had enough and told her that maybe if she had started the diet when she was in her 20's it might have made a difference, but by the time she was in her 60's it was probably too late. I had to drive for two hours and make special arrangements with my daughter to look after her father so that I could spend time with these "friends". Its not worth it! I'll stick to my local friends that at least have the courtesy to listen, and show some sympathy when I need it.
What I have found interesting is how few people if any will say 'if you ever need a break let me know and I'll came and stay with him for a few hours or if you ever need help call me and I'll be there'. My very best friend and one of my neighbours and the people that run our corner store are very kind to him....everyone else really keeps their distance......I didn't know AZ was contagious!
Yes I hear all of you..if not for the caregivers that help me as much as DH, there would be almost no one. I do have a bible study group I go to once a week. And I am part of a ministry at church but almost no one ever asks how DH is or how I am or if they do they listen for half a second...pregnant pauses.... Funny, the caregivers were to give me more time to myself but I find I look forward to them coming just to have another human being to talk to about things and we tend to do things together...or they will run errands for me...12 hours a week. And I have one friend who faithfully calls about once a week to chat....he and I served together at Camp Pendleton.
At the moment DH is watching something mindless on TV, some funny video and I see him smiling at what is being shown. But no conversations anymore....just nothing...just nothing anymore.
Mimi said "......but I find I look forward to them coming just to have another human being to talk to...."
When Claude went on Hospice, the same aide came three times a week to shower/shave him etc. I would stand there and talk to her while she was tending to him. She asked me one time if I wasn't happy with the way she did things because I was watching her. I told her no, I wanted someone to talk to.
This is a problem with many diseases. When my mother had cancer she was lucky that she had many visitors and a core group of friends that looked after her. She was in the hospital for many months and it was not a convenient drive, but some friends would visit and paint her toenails.
Our Rabbi, on the other hand only visited her once at home over 6 months. When she died we had the rabbis from the school she worked minister over her funeral. I don't know if he ever notified our temple about her death.
So many others face the same trails as us. Cancer is as bad socially as it was in the 70s, but many caregivers suffer from social isolation.
Yes, paulc, if we learn the lesson of compassion for other caregivers or patients as they struggle with their own isolation, and if we act upon that compassion and lessen their isolation by showing some support, then something good has come out of this journey we are on. Bonnie
I am Catholic. One of the ministries I am involved with is taking Communion to Catholic patients in the hospital. I find that often some just want someone to talk to about anything at all.
Yes, Paul if there is anything of value I have learned as a caretaker it's this: I will make a conscience effort to make myself available, lend a helping hand, and listen to those who are caring for a sick loved one. This is embedded deep in my core.