I went to visit my brother tonight and he told me, almost in passing, that his girlfriend, the one who was sent way, had a serious heart attack. It is unclear is she is still in the hospital or not. It was hard to determine how much this is bothering him, he is never one to let on that anything is bothering him at all.
Other than that, it was a usual get together. These days, on a weeknight, we take the elevator to the first floor, he gets a coffee and I get a tea and we chat for 15-20 minutes. Then I can't think of anything else more to say and then I leave. It takes me 45 minutes each way to get to the nursing home and back.
Wednesday, November 30, 2011
Sunday, November 27, 2011
post thanksgiving breakfast
Today I took my son with me to have Sunday breakfast with my brother. My daughter was totally bogged down with college applications so she didn't come. My brother looked kind of down. The period between Thanksgiving and Christmas always seems to get to him. I asked him if anything was wrong, and he said no. But you could see, he was kind of hunched down and not looking up. My son is really good at engaging anyone in a conversation, and even he was having a hard time. However, by the end of the breakfast my brother was opening up a bit.
In the last couple of years, this would have gotten me a bit bent out of shape, I would have intervened more, do more to cheer him up. But I'm pretty tired of that, I have a lot to do at home helping (nagging) my daughter to finish her applications, and I want to enjoy my weekend off as much as possible. So I left the nursing home not having that bother me that much.
In the last couple of years, this would have gotten me a bit bent out of shape, I would have intervened more, do more to cheer him up. But I'm pretty tired of that, I have a lot to do at home helping (nagging) my daughter to finish her applications, and I want to enjoy my weekend off as much as possible. So I left the nursing home not having that bother me that much.
Saturday, November 26, 2011
thanksgiving
I brought my brother to my new house for the first time on Thanksgiving. He had a pretty hard time on the stairs. We took him to the side door so that he could go up the stairs inside the house instead of outside the house. We figured there was a better railing and better lights. But I think because he doesn't do stairs anymore that it's really difficult for him. In general, we figure we can lift him up by under the arms and just lift him up the stairs, but he doesn't like that.
I felt a little bad because I was cooking and hostessing and didn't have a lot of time to talk to him. Our guests (my son's girlfriend's family) didn't talk to him much at all, which is not surprising because if you don't know him pretty well, it's hard to engage him in any conversation at all.
Tomorrow I am taking both my kids and having breakfast with him, I assume that it is going to go a lot better. He likes his routines.
I felt a little bad because I was cooking and hostessing and didn't have a lot of time to talk to him. Our guests (my son's girlfriend's family) didn't talk to him much at all, which is not surprising because if you don't know him pretty well, it's hard to engage him in any conversation at all.
Tomorrow I am taking both my kids and having breakfast with him, I assume that it is going to go a lot better. He likes his routines.
Sunday, November 20, 2011
ekg
I was away for about 10 days. First I went to San Francisco and visited with my son and his girlfriend. Then I came home for a day and went to Minnesota for work, and was able to stay with friends. It was great to get away and not have any responsibilities in regards to my brother, a real vacation, even though the Minnesota work part was kind of stressful, I would take that any day in exchange for not having to be responsible for someone else's survival.
When I got back in town, I called my brother from the taxi that was taking me home. His speech sound kind of slurred, and I couldn't tell if it was because he was tired (sometimes that happens) or if he had another TIA. I wrestled with myself the rest of the week about whether or not I needed to go out and check up on him. I decided not to because it didn't seem that by the time I found out, there was little that could be done. I was into avoidance big time, something I am not proud of.
I went and visited him today, wondering what I would find. He looked good, his speech was clear (well, clear for him, at least). He has lost a lot of weight and I think he is not dragging around as much. But I was really surprised to find out that he had an EKG scheduled for today, a Sunday. When I asked why, they said it was run of the mill, and they were doing it on a Sunday because of the upcoming holiday. I'm not sure if I can really believe the nurse or not. I figure I will call the nursing home and the doctor later tomorrow and get the results of the EKG.
I have invited my brother to come to my house for Thanksgiving, it's the first time he will have been there since we have moved. There are a bunch of steps he is going to have to maneuver, which concerns me a bit, but I figure we can just kind of boost him up and down if we have to. I am also thinking about how I am going to protect my furniture in case he wets his pants. This is a little disconcerting, but I don't think it's a reason to not have him over.
When I got back in town, I called my brother from the taxi that was taking me home. His speech sound kind of slurred, and I couldn't tell if it was because he was tired (sometimes that happens) or if he had another TIA. I wrestled with myself the rest of the week about whether or not I needed to go out and check up on him. I decided not to because it didn't seem that by the time I found out, there was little that could be done. I was into avoidance big time, something I am not proud of.
I went and visited him today, wondering what I would find. He looked good, his speech was clear (well, clear for him, at least). He has lost a lot of weight and I think he is not dragging around as much. But I was really surprised to find out that he had an EKG scheduled for today, a Sunday. When I asked why, they said it was run of the mill, and they were doing it on a Sunday because of the upcoming holiday. I'm not sure if I can really believe the nurse or not. I figure I will call the nursing home and the doctor later tomorrow and get the results of the EKG.
I have invited my brother to come to my house for Thanksgiving, it's the first time he will have been there since we have moved. There are a bunch of steps he is going to have to maneuver, which concerns me a bit, but I figure we can just kind of boost him up and down if we have to. I am also thinking about how I am going to protect my furniture in case he wets his pants. This is a little disconcerting, but I don't think it's a reason to not have him over.
Tuesday, November 8, 2011
a visit before vacation
I went to see my brother tonight. It was raining off and on, so traffic was kind of slow but not too bad. I have a hard time driving when it's dark out, and now it's dark by 5 pm when I get off the train and pick my car up at the train station and take off for the nursing home. I would really prefer to not be driving under these conditions, but I am careful and go more slowly than I do in daylight. I must sound like an old lady.
The visit went well. My brother had already had dinner (it was only 5:40 or so), which kind of surprised me. He didn't look weaker than normal, which is good because they have increased his lasex. It is kind of disturbing that they are not taking his blood pressure on a daily basis, he says it happens about once every 10 days. They are also still waking him up at 5:30, so I asked for the social worker and told her. She said she would do something about it, let's see if she does.
I am going on vacation to visit my son, coming back into town for about 24 hours, and then leaving for another two days for a work trip, returning fairly late at night, so I won't be seeing my brother for about a little more than a week and a half. I am actually kind of looking forward to not having to drive out to the nursing home, but I am concerned about his heart. He told me his cough has disappeared (at least he didn't cough when I was with him), but he still sounds pretty hoarse.
The visit went well. My brother had already had dinner (it was only 5:40 or so), which kind of surprised me. He didn't look weaker than normal, which is good because they have increased his lasex. It is kind of disturbing that they are not taking his blood pressure on a daily basis, he says it happens about once every 10 days. They are also still waking him up at 5:30, so I asked for the social worker and told her. She said she would do something about it, let's see if she does.
I am going on vacation to visit my son, coming back into town for about 24 hours, and then leaving for another two days for a work trip, returning fairly late at night, so I won't be seeing my brother for about a little more than a week and a half. I am actually kind of looking forward to not having to drive out to the nursing home, but I am concerned about his heart. He told me his cough has disappeared (at least he didn't cough when I was with him), but he still sounds pretty hoarse.
Sunday, November 6, 2011
the care meeting and an unsettling phone call
The care meeting took place last Friday, November 4. Apparently there is supposed to be one every 3 months and is a bit pro forma. The social worker, the activities director, and the head of nursing attended. We met in the second floor lounge, which used to have a nice table in it and table and chairs, as well as a loveseat and a tv. My brother and I sat in the loveseat because the rest of the furniture is missing. When the other 3 came in I asked what had happened to the furniture. One person replied that they needed the chairs for the big activity room. Someone else replied that the storage room was next door, they had removed the furniture to bring in storage, and never replaced it. Somehow this all didn't surprise me, as most of the time, there seems to be no one in charge of the floor or the whole facility for that matter.
The three of them didn't have much to say, so I brought in my list. I think I handled it pretty well and didn't get them angry. The first item on my list was the fact that it was me that discovered that my brother had put on 15 obs in three weeks and insisted that he get medical attention. The head nurse told me that they are now weighing him weekly. I told her that if they didn't step up to the plate on these kind of things, it made me feel that I could never go on vacation, that I needed to check up on him more than once a week to make sure that his heart was acting up. They nodded. I then told them I would like a diagnosis for his persistent cough. They told me that they were waiting for his labs to get back, but were referring him to a speech therapist. I was kind of surprised at that and asked why. The nurse told me that the speech therapist would look to see if it was a swallowing problem. I then mentioned that he seemed to be walking pretty well but was having more difficulty getting out of his chair, was there any way for him to get some exercise for that (they will check into it.) I brought up that his Lasex had been increased, which meant more frequent and heavier urination, and asked that his diaper be changed more frequently, since the last time I saw him he was soaking wet. I mentioned that his insurance was going to run out in January, and they told me when the time comes to tell the billings person. I also told them I was still getting mail at my old house and the social worker said she would make out some kind of form (again) for new addresses. I mentioned that his physical care seemed to be slipping, he is not getting shaved as often as he is supposed to, and his hearing aid is not getting cleaned. (I reminded them that by not cleaning it, they caused a $400 repair that Manor paid half of). They all agreed to fix these problems.
Then my brother piped up and asked if it was his turn. He said that he really liked the staff at the home, and he was happy to live there. And then he said, get this, I am paraphrasing:"I don't ask for much, but my main goal I want to discuss with you is managing my medical condition, I want to live as long as possible, that's all I ask". I was astounded, it was very moving the way he said it. And then he proceeded to tell them that he didn't want pork or milk. I asked him why he didn't want pork and he said it's because he's Jewish. I remarked this had never stopped him before! I also asked him what the problem was with the milk and he said he didn't like the way it tasted. Fair enough. We were able to persuade him to eat cottage cheese instead. Lastly, he asked them why he was being woken up at 5:30 every morning to get dressed. They asked him when he wanted to wake up and he said some time between 7 and 7:30. They said that was during a shift change and he might not get woken up exactly at 7, he might have to wait a bit and he was ok with that.
Right before I left, they thanked me for coming and said that it was good, most of the relatives don't come and let them know what's going on! It really does make me shudder about how most of the rest of the patients can be treated if they don't have advocates to speak up for them. I made a little speech about how I knew it was hard to run a big institution like that with not enough staff or funds, and hoped that they would tolerate me if I got frustrated some times. It was all very friendly.
Saturday, as I was driving my daughter to take her SAT test, I got this phone call from the nursing home at 7:45 am. Nobody from there calls that early unless there is a problem. But it turns out the good nurse, who has been relegated to the weekends, and on a different floor, but who has taken an interest in him, noticed that his test results came back (she said at 1:30 am). The results showed that he was suffering from mild congestive heart failure (no news to me) and still had fluid in his right lung, so his lasex was increasing for 7 days, she wanted me to know. After I hung up, I called back to let her know that his blood pressure really needs to be checked because he is prone to rapid blood pressure decline under these conditions. She had already left, and then I realized that she was calling me so early because it was the end of her shift. She is really a remarkable person. So I called the nurses desk and repeated the mantra about his blood pressure.
Today, I visited for our regular Sunday breakfast. I told my brother how proud I was of how he had handled the meeting and I think he liked that. It sounds like the dietary changes have been made, but he is still being woken up at 5:30, and he didn't get his shower or shave Friday night, so I need to call tomorrow about that. His hearing aid was pretty cleaned when I check it, but I had cleaned it on Friday, so who knows whether they are doing that or not. I asked him if they had recently taken his blood pressure and he said no. I reminded him that if he felt faint at all, he immediately had to tell someone because the condition could be life threatening. He gave me his usual "I will" but I know it is unlikely that he would tell someone. At this point, I am trying to let go a bit, I can't stress myself out to the point that I get sick like I used to.
A very interesting week.
The three of them didn't have much to say, so I brought in my list. I think I handled it pretty well and didn't get them angry. The first item on my list was the fact that it was me that discovered that my brother had put on 15 obs in three weeks and insisted that he get medical attention. The head nurse told me that they are now weighing him weekly. I told her that if they didn't step up to the plate on these kind of things, it made me feel that I could never go on vacation, that I needed to check up on him more than once a week to make sure that his heart was acting up. They nodded. I then told them I would like a diagnosis for his persistent cough. They told me that they were waiting for his labs to get back, but were referring him to a speech therapist. I was kind of surprised at that and asked why. The nurse told me that the speech therapist would look to see if it was a swallowing problem. I then mentioned that he seemed to be walking pretty well but was having more difficulty getting out of his chair, was there any way for him to get some exercise for that (they will check into it.) I brought up that his Lasex had been increased, which meant more frequent and heavier urination, and asked that his diaper be changed more frequently, since the last time I saw him he was soaking wet. I mentioned that his insurance was going to run out in January, and they told me when the time comes to tell the billings person. I also told them I was still getting mail at my old house and the social worker said she would make out some kind of form (again) for new addresses. I mentioned that his physical care seemed to be slipping, he is not getting shaved as often as he is supposed to, and his hearing aid is not getting cleaned. (I reminded them that by not cleaning it, they caused a $400 repair that Manor paid half of). They all agreed to fix these problems.
Then my brother piped up and asked if it was his turn. He said that he really liked the staff at the home, and he was happy to live there. And then he said, get this, I am paraphrasing:"I don't ask for much, but my main goal I want to discuss with you is managing my medical condition, I want to live as long as possible, that's all I ask". I was astounded, it was very moving the way he said it. And then he proceeded to tell them that he didn't want pork or milk. I asked him why he didn't want pork and he said it's because he's Jewish. I remarked this had never stopped him before! I also asked him what the problem was with the milk and he said he didn't like the way it tasted. Fair enough. We were able to persuade him to eat cottage cheese instead. Lastly, he asked them why he was being woken up at 5:30 every morning to get dressed. They asked him when he wanted to wake up and he said some time between 7 and 7:30. They said that was during a shift change and he might not get woken up exactly at 7, he might have to wait a bit and he was ok with that.
Right before I left, they thanked me for coming and said that it was good, most of the relatives don't come and let them know what's going on! It really does make me shudder about how most of the rest of the patients can be treated if they don't have advocates to speak up for them. I made a little speech about how I knew it was hard to run a big institution like that with not enough staff or funds, and hoped that they would tolerate me if I got frustrated some times. It was all very friendly.
Saturday, as I was driving my daughter to take her SAT test, I got this phone call from the nursing home at 7:45 am. Nobody from there calls that early unless there is a problem. But it turns out the good nurse, who has been relegated to the weekends, and on a different floor, but who has taken an interest in him, noticed that his test results came back (she said at 1:30 am). The results showed that he was suffering from mild congestive heart failure (no news to me) and still had fluid in his right lung, so his lasex was increasing for 7 days, she wanted me to know. After I hung up, I called back to let her know that his blood pressure really needs to be checked because he is prone to rapid blood pressure decline under these conditions. She had already left, and then I realized that she was calling me so early because it was the end of her shift. She is really a remarkable person. So I called the nurses desk and repeated the mantra about his blood pressure.
Today, I visited for our regular Sunday breakfast. I told my brother how proud I was of how he had handled the meeting and I think he liked that. It sounds like the dietary changes have been made, but he is still being woken up at 5:30, and he didn't get his shower or shave Friday night, so I need to call tomorrow about that. His hearing aid was pretty cleaned when I check it, but I had cleaned it on Friday, so who knows whether they are doing that or not. I asked him if they had recently taken his blood pressure and he said no. I reminded him that if he felt faint at all, he immediately had to tell someone because the condition could be life threatening. He gave me his usual "I will" but I know it is unlikely that he would tell someone. At this point, I am trying to let go a bit, I can't stress myself out to the point that I get sick like I used to.
A very interesting week.
Wednesday, November 2, 2011
the 63rd birthday
Yesterday (Tuesday) was my brother's 63rd birthday. My husband, daughter, and I drove out to the nursing home to take my brother out to a restaurant near the nursing home called "Gullivers". This was by design, because it is owned by the same people who own the Gullivers that was located near my brother's old home, and he used to frequent it a lot, often on his own. The staff there knew him pretty well and treated him nicely. The restaurant we went to last night wasn't as nice, the menu wasn't as big, but he seemed to like it. He also seemed to like the shirt that I bought him as a present, although I gave it to him with trepidation because the nursing heme is always losing his clothes in the laundry.
I was surprised about how chipper he was. When I had breakfast with him on Sunday, I walked in on a conversation the nurses were having about a patient who had attacked another patient, and the person turns out to be his girlfriend. She had been sequestered (isolated) behind the nurses desk when I got there. My brother told me last night that she had been shipped out to another facility by Sunday afternoon, presumably never to be seen again. He didn't seem upset at all and was very philosophical about it , reminding me that she was severely mentally ill and reminding me that she had a "psychotic episode". My brother has Aspergers Syndrome, and it has always been a bit unsettling how he deals with personal loss, it just doesn't seem to bother him that much. I don't know if that is good or not.
He has managed to lose some weight from the losing fluids by a change in his medication, but he still has a nasty cough that I plan to discuss at his care meeting on Friday. At least I don't have to inquire about how to keep him safe from his girlfriend's violent attacks on people. This whole thing is just so weird., I keep on having to remind myself that he almost died three times last year and he is doing remarkably well, considering.
I was surprised about how chipper he was. When I had breakfast with him on Sunday, I walked in on a conversation the nurses were having about a patient who had attacked another patient, and the person turns out to be his girlfriend. She had been sequestered (isolated) behind the nurses desk when I got there. My brother told me last night that she had been shipped out to another facility by Sunday afternoon, presumably never to be seen again. He didn't seem upset at all and was very philosophical about it , reminding me that she was severely mentally ill and reminding me that she had a "psychotic episode". My brother has Aspergers Syndrome, and it has always been a bit unsettling how he deals with personal loss, it just doesn't seem to bother him that much. I don't know if that is good or not.
He has managed to lose some weight from the losing fluids by a change in his medication, but he still has a nasty cough that I plan to discuss at his care meeting on Friday. At least I don't have to inquire about how to keep him safe from his girlfriend's violent attacks on people. This whole thing is just so weird., I keep on having to remind myself that he almost died three times last year and he is doing remarkably well, considering.
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