Today, I took my brother home to my house for the first time since he has been in the nursing home. It has been surprisingly easy, probably the fact that it wasn't raining or snowing helped. The nursing home gave me pull ups for him which it turned out he didn't even need. I had him sit in the car for 5 minutes while I ran in to get some extra ingredients for dinner. Then we went to the Northwestern University womens softball game. Because it was Easter, the crowd was fairly thin and it was easy to get him a seat on the first row of the bleachers so I didn't need to ask anyone to move. He was strong enough to make it to the stands from the car. It's really great that the American Disability Act has forced establishments to build ramps, it really helped in this case. I was surprised to see another physically disabled person in a wheelchair at the same game.
It was good to get him fresh air and just out in society. My husband and daughter eventually joined us and it was just a nice, brief family kind of thing.
Then we went back to my house and I sat him in a chair with arms and had him watch a basketball on TV until my husband and daughter returned. By that time friends had come over and we had a pleasant dinner. My husband is now driving my brother back to the nursing home. I am pretty tired, to say the least, but feel very glad that we all put in the extra effort today, it wasn't that big a deal.
Sunday, April 24, 2011
certified mail
I received a notice that the postman had tried to deliver certified mail from the nursing home to me on Wednesday. Of course, it took me until Saturday to locate it's where abouts, so I had several days to worry about what in the world they were sending me a certified letter about. They have recently taken on a new administrator and several key home mangers had suddenly "disappeared". I wondered if my brother was going to get kicked out, lose his medicaid bed, etc.
It turns out it was just quarterly report of his "trust" account. (I put some cash in an account for him so he buy incidentals, like lunch from a take out place that the nursing home brings in, etc.)
It was a little stressful to wait and see what the envelope was about. It just shows you the state of social services in this country and how fragile the delivery system is, that you have to worry about it all the time.
Today, I go to pick him up in a few hours to bring him over to my house for a while. We are hoping to bring him to a Northwestern University women's softball game for a bit, we'll see if we can transport him and find him a comfortable place to sit. (assuming that it doesn't rain, which it could.)
It turns out it was just quarterly report of his "trust" account. (I put some cash in an account for him so he buy incidentals, like lunch from a take out place that the nursing home brings in, etc.)
It was a little stressful to wait and see what the envelope was about. It just shows you the state of social services in this country and how fragile the delivery system is, that you have to worry about it all the time.
Today, I go to pick him up in a few hours to bring him over to my house for a while. We are hoping to bring him to a Northwestern University women's softball game for a bit, we'll see if we can transport him and find him a comfortable place to sit. (assuming that it doesn't rain, which it could.)
Tuesday, April 19, 2011
Tuesday evening visit
My brother seemed ok tonight, not quite as hoarse as last weekend. I noticed they are giving him a dietary supplement, probably because I have made some noise about his health. He seems to be breathing heavily which is not a good sign. I understand the lack of appetite may be caused by the congestive heart failure, at least that's what I read on the Internet. I asked my brother to spend Sunday afternoon with me and my family at my house, he seemed pleased.
It is really nasty outside, 37 degrees F and storming with ligthening, and it's already the end of April. I am happy to be back home.
It is really nasty outside, 37 degrees F and storming with ligthening, and it's already the end of April. I am happy to be back home.
Sunday, April 17, 2011
is another crisis developing
Last night we got home from my husband's birthday party and got a message on the machine telling me that my brother had fallen, not to worry, that he was fine. Apparently, one of the other patients had dropped something and he bent down to pick it up. It is the staff's assumption that it's a balance problem, but I immediately called them and let them know about the incident earlier in the morning where I wasn't sure if he was passing out at breakfast. I am not sure if I really got through to the nurse either yesterday morning or last night.
I had left a message for the patient advocate but she has yet to call back. She doesn't start until noon. My plan is to try and call her, and if that doesn't work, call the nurse practitioner. The problem is that it is Sunday and I'm not sure who is working today.
This may be nothing, or it may be the beginning of something, who knows? At least it's not solely my responsibility anymore, like it was when he was living alone. In the old days, I would constantly be worrying about him until he got bad enough to go to the emergency room (and then I would really start worrying after that.) I think I have really begun to accept the situation now.
I had left a message for the patient advocate but she has yet to call back. She doesn't start until noon. My plan is to try and call her, and if that doesn't work, call the nurse practitioner. The problem is that it is Sunday and I'm not sure who is working today.
This may be nothing, or it may be the beginning of something, who knows? At least it's not solely my responsibility anymore, like it was when he was living alone. In the old days, I would constantly be worrying about him until he got bad enough to go to the emergency room (and then I would really start worrying after that.) I think I have really begun to accept the situation now.
Saturday, April 16, 2011
hoarse
I went to visit my brother today with my husband. We decided around 8 am to go visit him in time to take him out to breakfast. I spent 45 minutes on the phone trying to get in touch with the nursing home so I could tell him not to eat, but no one answered the phone at any of the nurses desks the whole time. When we got there he had already eaten, but we took him out anyway, he had coffee with us while we ate breakfast.
He was in ok spirits, but looked kind of tired and he was hoarse. He said he thought he was getting a cold. Then a strange thing happen he kind of either had a seizure or was beginning to pass our or something, but then he jerked back to normal. This only took a second or so.
Last week, I remarked to my family that something didn't look right. At that time, I spoke with my brother about it and he said he wasn't sleeping well because they were waking him up to change his diaper. He said the same thing again today. Now I'm not sure this is only because he has a cold and he's not sleeping. Or maybe this cold is going to turn into congestive heart failure troubles. I really trust my sixth sense about him and his health, I have predicted pretty accurately every time he is about to get into a medical crisis. Basically what happens is that you have to wait for his condition to get bad enough for someone to be able to figure out what the problem is, because he can't articulate what he is feeling. (or maybe he just doesn't feel it, who knows?)
Or maybe I am just obsessing. I stopped by to tell the nurse to keep an eye on him, but it was one of the well meaning ones who doesn't speak English very well and I'm a little concerned she didn't understand what I was saying. I left a message for the patient advocate, who has been very, very helpful in the past, but she hasn't called me back yet. Oh well, at least he's not by himself and I don't have to run over there twice a day to keep an eye on him. That is very good.
I have arranged for him to be able to sit outside on his own if he wants, but they haven't found his missing clothes yet.
He was in ok spirits, but looked kind of tired and he was hoarse. He said he thought he was getting a cold. Then a strange thing happen he kind of either had a seizure or was beginning to pass our or something, but then he jerked back to normal. This only took a second or so.
Last week, I remarked to my family that something didn't look right. At that time, I spoke with my brother about it and he said he wasn't sleeping well because they were waking him up to change his diaper. He said the same thing again today. Now I'm not sure this is only because he has a cold and he's not sleeping. Or maybe this cold is going to turn into congestive heart failure troubles. I really trust my sixth sense about him and his health, I have predicted pretty accurately every time he is about to get into a medical crisis. Basically what happens is that you have to wait for his condition to get bad enough for someone to be able to figure out what the problem is, because he can't articulate what he is feeling. (or maybe he just doesn't feel it, who knows?)
Or maybe I am just obsessing. I stopped by to tell the nurse to keep an eye on him, but it was one of the well meaning ones who doesn't speak English very well and I'm a little concerned she didn't understand what I was saying. I left a message for the patient advocate, who has been very, very helpful in the past, but she hasn't called me back yet. Oh well, at least he's not by himself and I don't have to run over there twice a day to keep an eye on him. That is very good.
I have arranged for him to be able to sit outside on his own if he wants, but they haven't found his missing clothes yet.
Sunday, April 10, 2011
vacation
I was able to take a week's vacation with my family and just came back. Frankly it was wonderful to finally be able to leave town without worrying that I was going to get a call that someone in my family was back in the hospital. This is the first time in around 5 years that I have felt that way. Our caseworker visited with my brother when I was gone and I hear that went well, although she said he wasn't shaved well and that she noticed a wet spot on the chair when he stood up and she had to get his diaper changed. The fact that he can't get it together to ask for these simple tasks of daily living disturbs me, but it also reminds me why he can't live in assisted living anymore.
I visited with him today, as soon as I got back in town. (I had called twice while I was gone.) He looked a little tired and his voice was hoarse. I asked him if he was drinking (he got irritated with me for asking) and later I asked him if he was sleeping well. It turns out they woke him up last night to change his diaper.
We stopped at a Wendy's to get him a grilled chicken sandwich and then I took him to a local forest preserve to have lunch. It was in the eighties and a lovely day, with a very nice warm, not hot, breeze. When we got back, he seemed to take a lot of pleasure in smugly telling the other patients what a beautiful day it was.
Earlier in my visit, we walked around and tried to figure out where he can go to sit outside now that the weather is getting better. It turn out the only sitting place we can find is for Alzheimer's patients, and they have rules about not going outside without an attendant. I will have to call this week and find out what the story is But it makes me feel bad that he and the other patients don't have easy access to go outside.
I also opened up a bill where they are charging me twice as much as they are supposed to for the additional physical therapy that I have arranged for him to receive. I will have to call about that, too, on Monday. It's always something. At least I got a week off without having to worry about it, though, that was very nice!
I visited with him today, as soon as I got back in town. (I had called twice while I was gone.) He looked a little tired and his voice was hoarse. I asked him if he was drinking (he got irritated with me for asking) and later I asked him if he was sleeping well. It turns out they woke him up last night to change his diaper.
We stopped at a Wendy's to get him a grilled chicken sandwich and then I took him to a local forest preserve to have lunch. It was in the eighties and a lovely day, with a very nice warm, not hot, breeze. When we got back, he seemed to take a lot of pleasure in smugly telling the other patients what a beautiful day it was.
Earlier in my visit, we walked around and tried to figure out where he can go to sit outside now that the weather is getting better. It turn out the only sitting place we can find is for Alzheimer's patients, and they have rules about not going outside without an attendant. I will have to call this week and find out what the story is But it makes me feel bad that he and the other patients don't have easy access to go outside.
I also opened up a bill where they are charging me twice as much as they are supposed to for the additional physical therapy that I have arranged for him to receive. I will have to call about that, too, on Monday. It's always something. At least I got a week off without having to worry about it, though, that was very nice!
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