My husband and I took my brother to see Argo on Sunday night and we had dinner too. We were supposed to do this on Saturday, but he had thrown up, and I thought it better to let him rest for a day. When I saw him, I remarked that he looked very tan, had he been sitting in the sun? My husband noticed it too, once I mentioned it. Of course he hadn't, it's been very cold in Chicago until today. I didn't think much of it.
I went to visit him Tuesday night. Usually I go on Wednesday, but I went on Tuesday because I am going out of town on Thursday, to California, to visit my kids. I won't be back until Monday evening. Again, I noticed he looked kind of orange/brown.
I came home, watched a bit of TV, and then realized what was bothering me. He looked like he had jaundice. So I got on the internet, started poking around, and read that nausea can be linked with jaundice. There are no good reasons to get jaundice, it often indicates hepatitis or even worse, an obstruction in the bile ducts or liver.
I didn't get much sleep that night. I called the nurse practitioner in the morning. I asked that in his latest labs if they took billirubin. She said that they did and that they were normal. That was a great relief.
Then I talked with a friend of mine who is a doctor. After speaking with him, it sounded like I could probably go away, if some kind of problem was percolating, it probably wouldn't present itself until I got back.
At least my husband is in town, who will visit him on the weekend. I asked him to look especially at my brother's eyes.
this is a diary of a sister/sibling who is caretaking her brother who is developmentally disabled and who also has cerebral palsy. Others are invited to post and comment about their own situations as well.
Sunday, March 31, 2013
the hearing aid
I just got a phone call from my brother. It's Sunday afternoon, March 10, 2013. He was quite upset, because the nursing home has misplaced his hearing aid. I was surprised I could even talk to him because usually he has a hard time hearing on a phone, even with his hearing aid on. I told him I would call the nurses desk and find out what's going on.
So I called and I was told that he had given it to his CN last night and now no one knows where it is. She didn't come in today like she was supposed to. They are calling her supervisor. I asked them to call me one way or another. They said ok.
It is aggravating to me that I have to find out from my brother that is missing. This is not easy to replace. It costs more than $2000, it means taking a day off from work to take him in, and it's another trip once it is made to make sure it works properly.
So I called and I was told that he had given it to his CN last night and now no one knows where it is. She didn't come in today like she was supposed to. They are calling her supervisor. I asked them to call me one way or another. They said ok.
It is aggravating to me that I have to find out from my brother that is missing. This is not easy to replace. It costs more than $2000, it means taking a day off from work to take him in, and it's another trip once it is made to make sure it works properly.
back from vacation
I just got back from vacation in San Diego, and now notice that I had a big influx in web hits on March 23. There must have been a conference where the url was shared. Thanks, readers! I do wish that people would write back though.
I went and visited my brother yesterday. He was in good spirits, I think because the nursing home has been celebrating Passover, which breaks up the monotomy.
I mentioned to him as soon as it gets warm enough to sit outside, I might want to bring sandwiches for lunch and take him out to a park instead of sit inside a restaurant. He liked that idea. At the last nursing home, it was kind of in the middle of no where as far as parks go. His new nursing home is much closer to parks I am familiar with. The problem was that he moved last October, and it's been too cold to sit outside.
I have been feeling a little down though. My brother really looks like his health has stabilized (assuming that his visit to the dermatologist later this week doesn't turn up any skin cancer). I should be happy about that, but I'm also thinking he can live a long time and that visiting/taking care of him is a lot of work.
I used to think that I couldn't leave him for more than 2 weeks, but now I am thinking that maybe I could squeeze in a 3 week vacation. It was really nice not having to visit him for 7-8 days.
I am wondering if my kids are both going to end up living in California, and how it would be difficult to "snow bird" for a few months every winter. I suppose I should just wait and see how things are going to turn out, it's too early too tell, and I'm not ready to retire yet.
I went and visited my brother yesterday. He was in good spirits, I think because the nursing home has been celebrating Passover, which breaks up the monotomy.
I mentioned to him as soon as it gets warm enough to sit outside, I might want to bring sandwiches for lunch and take him out to a park instead of sit inside a restaurant. He liked that idea. At the last nursing home, it was kind of in the middle of no where as far as parks go. His new nursing home is much closer to parks I am familiar with. The problem was that he moved last October, and it's been too cold to sit outside.
I have been feeling a little down though. My brother really looks like his health has stabilized (assuming that his visit to the dermatologist later this week doesn't turn up any skin cancer). I should be happy about that, but I'm also thinking he can live a long time and that visiting/taking care of him is a lot of work.
I used to think that I couldn't leave him for more than 2 weeks, but now I am thinking that maybe I could squeeze in a 3 week vacation. It was really nice not having to visit him for 7-8 days.
I am wondering if my kids are both going to end up living in California, and how it would be difficult to "snow bird" for a few months every winter. I suppose I should just wait and see how things are going to turn out, it's too early too tell, and I'm not ready to retire yet.
Sunday, March 10, 2013
hearing aid Found!
The nursing home called. The CN had left the hearing aid on a ledge outside his room. I made a point of reminding them how much this device costs, but alls well that ends well!
Saturday, March 2, 2013
mole
I had a very nice breakfast with my brother today. I found a copy of the Chicago Tribune at the restaurant and read to him some of the headlines and articles. He likes "discussing"current events, so it made the time go by a little easier.
He mentioned to me that the social worker, Becca, as well as one of the CNs really liked him a lot and he was very pleased about that. But then he also mentioned that the nurse practioner, Ashley, told him that his "birthmark" on his forehead had changed color and size. He was offended by her comment.
The "birthmark" is some kind of fairly large growth that has been on his forward for at least 10 years. I remember asking a doctor about it once and there's a name for it. It was kind of blue. At the time, it seemed like it was ok.
So right before I left, I looked more closely at it. It looks smaller, but very black. I will have to call Ashley on Monday and see what this is all about.
There is always something to do when it comes with my brother.
He mentioned to me that the social worker, Becca, as well as one of the CNs really liked him a lot and he was very pleased about that. But then he also mentioned that the nurse practioner, Ashley, told him that his "birthmark" on his forehead had changed color and size. He was offended by her comment.
The "birthmark" is some kind of fairly large growth that has been on his forward for at least 10 years. I remember asking a doctor about it once and there's a name for it. It was kind of blue. At the time, it seemed like it was ok.
So right before I left, I looked more closely at it. It looks smaller, but very black. I will have to call Ashley on Monday and see what this is all about.
There is always something to do when it comes with my brother.
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