We got up this morning with the intention of going first thing for a blood test, but before I got David in the shower, we had breakfast, and I had forgotten that he had to fast for this blood test, so we will do that tomorrow morning.
After a relatively slow and quiet start for the day, I ran out and finally got my flu vaccine at CVS. Sadly, the folks at the pharmacy know me pretty well, but always have to ask – “are you Shapiro or Kenison?” Then, picked up some hand rolls from the Korean Food Court for lunch. I heard from the agency that sends the aides that Jennifer was not going to make it this afternoon, and asked if BaBa could come in the evening to be with David when I went to a support group at RUSK Institute. We had quite a discussion about why BaBa was coming and how yesterday, David told me he thought that it would be a problem for me to leave him for two hours for this meeting. Today, he thought I was being ridiculous to worry, and that I should cancel BaBa. I didn’t cancel BaBa.
So, at 5pm I headed out to RUSK and arrived a little before the start of the group and BaBa got to David about the same time I arrived at RUSK. When I got to the 16th floor, there were two folks sitting in the conference room and I joined them. There was a 70ish year old woman and a 50ish year old man sitting in the room, and she was dominating the
conversation with what I would call lovingly, “liberal, commie, NY rhetoric” about how young people now a-days have no idea how this country is being manipulated and ruined by the extreme right. I kept relatively quiet, because I believe all her critiques of the the right wing, but think that she doesn’t give young people the credit they are due. I really think that the youth turn out is the tip of the iceberg, and will only grow and grow and lean more and more to the left, and all will be right with the world!
Anyway, more folks came in, and I wish I could give you one of the names of people who were there, but might want to protect the innocent. There were five women, three men and Dr. Kristine Kingsley, who was our fearless leader. After a short introduction, we began going around the table introducing ourselves or filling folks in on what currently was going on. First to go was the red diaper baby (if you are too young for that term, I have added a link to) who has been dealing with her husbands mugging from a number of years ago, and still has her issues – going to the gym five hours a day was one of her complaints. Then came a story more close to home – a 60ish year old woman whose husband had a stroke while in Maine, and talked about the great support system she found, and is still connected to near Portland, but things seem to be going along well for her and her husband, but the same acting out by her husband now that they are back in NY. Then, and young Doctor whose husband had a head on collision and is dealing with recovery. Also, he is further along in the recovery, but has physical problems and will be having shoulder replacement surgery done nest week. As we came closer to my turn, there was a German woman whose boyfriend just started back to work this week after a little over a year. He works for NY Transit and the great thing to hear is the support he got from his co-workers donating vacation, sick and overtime hours to make sure that he continued to get his full salary since he was out of work. I for one and cheering for his successful return to work.
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Then, all eyes turned to me. Well I started with “My story is much to sad to be told. But practically leaves me totally cold.” I gave a brief overview of the story, and the first question was – “are you alone in the apartment with him?” “Do you work?” I assured them that I was working on that, and they thought that now that we are coming on six months, I should make ways to get out on my own. Of all the folks around the table, I think I spent the most time talking. I had a lot to say and nobody tried to tackle me and tape my mouth shut. After me, one of the other guys spoke about his friend, who tragically had a motorcycle accident upstate while showing off trying to pass his car, and who has had his new partner leave him during his recovery, and Walter feels responsible for him, because they were former lovers, and this is causing some friction in is current relationship, etc. The next story was similar – car accident – man and woman who were in a a Boston/NYC long distance relationship, but they thought it would be a good idea for him to move in with her, when he could. I think she also said that they were only together for a little over a year. I would say huge mistake, but, love is a strange and tortured thing, right? Finally an older guy 70’s maybe even 80’s whose wife had dementia which they think is early stages of Alzheimer’s. He confessed that he thought he was not a good caretaker – not patient and really not empathetic, so worried about the future.
Mostly what I took away from all these folks was the impression that none of the folks around the table or the loved ones who were at home were really very essentially different than they were before the trauma that caused the change in their states, but often they are even more who they are. For example, a few talked about how their loved ones resented being taken care of and wanted their independence back more than anything else. I told them that I am lucky in that area, because David was the baby, and he actually doesn’t mind my having to do everything for him. He actually might have liked it it this started fifteen years ago! That is not to say that he doesn’t enjoy doing his own loving things for me.
In the end, it was very, very helpful to attend this meeting and we have another in February that both David and I will attend, which is more for the survivor than the caretaker. Just being able to voice the concerns and feelings I was having and getting some advise from folks who have been through it all.
Now, tomorrow, I am gearing up for a full day – blood, dentist, physical therapy, gym. The speech therapist asked to have the vocational therapy cancelled because she thought it was too early, which I agreed with.
Oh, and by the way – nothing from United yet, but I guess they just don’t really care about an unhappy disabled customer! This came up at the group as well, and they were scandalized that I hadn’t heard anything.