I had a very good visit with my brother yesterday. On Saturdays, I try to take him out for lunch. We have gone to a overpriced hot dog place and Denny's so far. This weekend, he asked to go to Denny's again (he has a hard time making decisions and is always trying to have me choose for him, but I try to refuse). The nursing home has an interesting location. To the east are upper middle class to upper class homes, but to the west and north, it is more working class. The Denny's is in a shopping center that has two Mexican groceries, a laundry mat, and a dollar store. There are lots of Mexican families that come in for breakfast/lunch, it's kind of nice.
Actually, I find Denny's a bit overpriced. I haven't ordered anything except a diet-coke, but my brother's breakfasts have been averaging around $8-9, and this is just for eggs, toast and hash browns with something to drink. I pay for his meal and mine separately, so I can charge his trust fund for his meals.
At breakfast, all of a sudden he told me that he knew the nursing home was a long drive for me but that he wanted met to know that the place was "satisfactory" and that he liked the staff. He seems to flourishing with the increased attention he is getting, and he certainly looks healthier. For instance, he has had a lot of problems with scratches and cuts that don't heal well and then he picks at them, and now they look a lot better. I think that he feels much safer there than at assisted living. My brother is a man of few words, so these comments made me feel great. I interpret them that he is adjusting tohie new environment pretty well.
His mood has really picked up since the patient advocate at the nursing home helped me get him permanently out of his wheel chair and back on his walker, where he is allowed to walk anywhere he wants on the floor. He wants to continue physical therapy so I am purchasing a 30 minute sessions for him twice a week at $60 a half hour. Some of this is I think he just likes the interpersonal interaction/attention he gets from the therapists, but that's ok with me for right now. Eventually, I would like to just hire someone with a car to take him outside twice a week, and get him some real exercise by walking and going places. It would probably help him a lot more, and cost less, but for right now I am contented with the status quo.
My husband has come up with the idea of organizing a "retirement" party for him (he never had one), where we invite a few close friends and his case manager. I think this is a good idea and hope to do it sometime this spring.
Meanwhile, today we moved him out of his assisted living apartment. It was pretty depressing. His living situation has always been a bit austere, but in the last two years, it just keeps on shrinking. He has gone from sharing a bedroom in a two bedroom town home, to a very small studio apartment to now sharing a bedroom with a very sick man who keeps the lights off on his side all the time, and there is no access to a window. He has pants ranging in size form 40 to 32. He is just so skin and bones now because of a loss of muscle,due to aging and cerebral palsy, that I have decided to give away some of the larger clothes. There isn't a lot of room for his belongings in his new room, so I have to triage a lot of stuff.
At assisted living, he used to get these dead beetles that were pretty large. When I told the managers, they started spraying his apartment weekly. Then an entomologist at work told me they were not beetles but roaches (these guys were so large, I didn't think they qualified.) I have only seen dead "beetles", but they freak me out. I put all his clothes in plastic bags and then put them in my garage, and taking the bags out one by one to wash his clothes before I bring them over to the nursing home. I don't want any cross contamination going on,especially in my own house.
When I start to feel sorry for myself, I start telling myself that for one holiday weekend (I have President's Day off tomorrow), I would like to not to do any chores for my brother. But then I figure, this is kind of like being a parent, where there are never any days off, and then it doesn't seem quite so onerous.
One last thing I would like to mention. Lately, I have been trying to give positive reinforcement to the staff that has been taking care of my brother. When I wrote a note to assisted living, asking them to let him out of the last two months of his lease, I did mention how important their facility had been for my brother, and how it had given him almost a year to live "independently", i.e. not with other developmentally disabled people, which had always been his personal goal. I didn't think much about it while I was writing the note, it was just stating the obvious to me. But when the manager called me to let me know they were letting me out of the lease, she was quite appreciative of the message. So the next day, after my brother told me he liked where he was living, I called the patient advocate and told her that she had a lot to do with his adjustment and she just beamed. My husband and I think that the staff probably just hears from people when things are going wrong, not when they are going good.
Next Sunday, our little group of Chicago Siblings of people with developmental disabilities is getting together for lunch/coffee and I am really looking forward to it. It is really great to get together with people who are so supportive and non-judgemental. It is a bit awkward because we know each other mainly through the internet, but very well worth attending.
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