Last Saturday, the whole famly went to have breakfast with my brother. My two kids were in town. When I went to go get him, he didn't lok too good. He had a hard time getting out of his chair and he looked tired. His mouth was dry, he was slurring his speech. When we got to the restaurant, he immediately put his head on the table. I immediately ran to get him some water, and my husband gave him a banana. He picked up a bit but still didn't look great.
Today, Wednesday ijght, I went to go visit him. He hadn't eaten anything because he thought I was going to take him out for dinner. I was really, really tired and din't want to make the effort, so I suggested he get his dinner and we could eat in the lobby, which we did.
It was while he was havinig dinner t hat I discovered that he had vomited last Friday night. He had pulled the cord for the nurses aides, but nobody came, and he wasn't cleaned up until they woke him up in the morning.
I am really angry. Of course I don't know exactly what happened (who know s if he really pulled the cord?) but they are supposed to tell me every time he vomits. Vomiting is very dangerous for him, he gets dehydrated and then he goes into afib. It was good that I showed up and was able to ply him with liquids.
They are also not shaving him or brushing his teeth. I am going to raise a fit with the nurse supervisor tomorrow.
Another issue is his teeth. I talked with his dentist, who visits the nursing home, whom sees like a really nice guy. The main idea is that most of his teeth are roting out at the base and he could have many pulled. However, the dentist doesn't think my brother can easily handle dentures, so he advises taking a tooth out only when it breaks off, since my brother doesn't seem to be in any pain. But the scenario is that eventually he is going to lose all his teeth, he won't be able to chew, and then he will be on soft food. I am thinking if this comes to be, he will stop eating altogether. Today I offered him a delicious homemade piece of pumpkin bread which he declined because he decided it had "too much sugar". At this point, I am desperate for him to have any calories. Did I mention he has started to lose weight again?
At other times he will turn down sweets, and then sneakily devour what is ever put in front of him. Not tonight however.
Wednesday, December 2, 2015
Sunday, November 8, 2015
entertainment
The nursing home let me know that they were celebrating the November birthdays two days before the event. Fortunately, I was on top of it and had asked by brother the previous week when the celebration was.
He is kind of funny about the whole thing. He professes not to care, and doesn't want his birthday announced. In fact when they do it by mistake, he gets mad. But he made it pretty clear that he wanted me to attend the event.
The event is held in a room with a lot of tables in it. It takes a very long time for the attendees to get wheeled into the room. Very few are in walkers. They always have entertainment at these affairs.
This yea'r entertainment was a singer whose father had recently moved into the nursing home. She sang a lot of tunes from the "thirties, forties,fifies, sixties, and maybe even the seventies". Actually, she sang a bunch of old Boadway melodies and Frank Sinatra songs. Not my type of music. But she was energetic and spirited. It was the fist time I saw an entertainer go into the audience and actually try to make contact with the patients. Mind you, this is not easy to do because most of them are stroke victims and in various stages of consciousness. But there are a few who are more alert, including my brother. The tunes were cathchy and I tried to respond enthusiastically. We both clapped. Our feet tapped to the music. The singer got a blind patient to getup and dance with her. And another man with a November birthday got up and danced with her two. He could barely stand but she slowed dance with him, I was very touched. My brother seemed to actually get into it.
It went on for an hour. I was ready to leave thirty minutes before the end but obviously I couldn't.
As we left, my brother remarked that the show was actually good and that he enjoyed.it.
I can't say that I would volunteer to go to an event like this, but it did make me feel that I did this for my brother. It's good to not think of yourself first always.
He is kind of funny about the whole thing. He professes not to care, and doesn't want his birthday announced. In fact when they do it by mistake, he gets mad. But he made it pretty clear that he wanted me to attend the event.
The event is held in a room with a lot of tables in it. It takes a very long time for the attendees to get wheeled into the room. Very few are in walkers. They always have entertainment at these affairs.
This yea'r entertainment was a singer whose father had recently moved into the nursing home. She sang a lot of tunes from the "thirties, forties,fifies, sixties, and maybe even the seventies". Actually, she sang a bunch of old Boadway melodies and Frank Sinatra songs. Not my type of music. But she was energetic and spirited. It was the fist time I saw an entertainer go into the audience and actually try to make contact with the patients. Mind you, this is not easy to do because most of them are stroke victims and in various stages of consciousness. But there are a few who are more alert, including my brother. The tunes were cathchy and I tried to respond enthusiastically. We both clapped. Our feet tapped to the music. The singer got a blind patient to getup and dance with her. And another man with a November birthday got up and danced with her two. He could barely stand but she slowed dance with him, I was very touched. My brother seemed to actually get into it.
It went on for an hour. I was ready to leave thirty minutes before the end but obviously I couldn't.
As we left, my brother remarked that the show was actually good and that he enjoyed.it.
I can't say that I would volunteer to go to an event like this, but it did make me feel that I did this for my brother. It's good to not think of yourself first always.
Monday, October 26, 2015
bela fleck
My brother's 67th birthday is next Sunday. This Sunday, my husband and I took my brother out for dinner and music as something different.
He seemed kind of tired when we picked him up. We went to Noodles and Company (because it's located in a shopping center near a parking lot) and he ordered Pad Thai. He didn't eat all of it.
Next we went to go hear Bela Fleck, who is a famous banjo player, as well as his wife, Abigail Washburn, who is also a famous banjo player. The music last night was all about American Roots. It was lovely.
The auditorium where the concert was located was lovely. A big parking lot and access was easy.
Every seat in the house was good.
It was some work to get him from the car to his seat, but after he was seated, the logistics were ok.
Even his hearing aid was working, which was a miracle.
Yet, it was really hard to tell what he thought about the music. Could he hear it, or did it sound like noise because of his hearing loss? What kind of sense can he make of music? I know some, because I hear him humming some times.
When I asked him if he liked the concert he told me that he didn't grow up on folk music. Obviously, neither did I. But it is unclear what kind of music he likes, it's not like he ever asked for a radio channel, a record, or anything like that so you would know. Eventually he said he enjoyed it. My husband thinks he probably liked the evening because it got him out of the nursing home and with a crowd and human contact.
I had mixed feelings about the event. Obviously, it's important to get him outside and not to just do routine visits to the House of Pancakes and Panera, which we have done a lot. But I also felt like we could have taken him anywhere, any place would do. I thought about how much the communication with him is mainly one way. I found myself wondering what he was thinking very often, it's clear his mind and thinking processes are not like mine.
I also felt myself feeling a little (not a lot) resentful, about all the sheparding needed. It's true the evening was for him, and not for me, and it served its purpose. Yet it also reminded me that I usually need to prod myself to take him out because it's just not that fun, even if the music was great.
Next week we do our routine birthday dinner at a restaurant. Two of our friends are very considerate and agree to join us. For that I am very grateful, it makes it less depressing. My guess is that brother will enjoy that experience more.
He seemed kind of tired when we picked him up. We went to Noodles and Company (because it's located in a shopping center near a parking lot) and he ordered Pad Thai. He didn't eat all of it.
Next we went to go hear Bela Fleck, who is a famous banjo player, as well as his wife, Abigail Washburn, who is also a famous banjo player. The music last night was all about American Roots. It was lovely.
The auditorium where the concert was located was lovely. A big parking lot and access was easy.
Every seat in the house was good.
It was some work to get him from the car to his seat, but after he was seated, the logistics were ok.
Even his hearing aid was working, which was a miracle.
Yet, it was really hard to tell what he thought about the music. Could he hear it, or did it sound like noise because of his hearing loss? What kind of sense can he make of music? I know some, because I hear him humming some times.
When I asked him if he liked the concert he told me that he didn't grow up on folk music. Obviously, neither did I. But it is unclear what kind of music he likes, it's not like he ever asked for a radio channel, a record, or anything like that so you would know. Eventually he said he enjoyed it. My husband thinks he probably liked the evening because it got him out of the nursing home and with a crowd and human contact.
I had mixed feelings about the event. Obviously, it's important to get him outside and not to just do routine visits to the House of Pancakes and Panera, which we have done a lot. But I also felt like we could have taken him anywhere, any place would do. I thought about how much the communication with him is mainly one way. I found myself wondering what he was thinking very often, it's clear his mind and thinking processes are not like mine.
I also felt myself feeling a little (not a lot) resentful, about all the sheparding needed. It's true the evening was for him, and not for me, and it served its purpose. Yet it also reminded me that I usually need to prod myself to take him out because it's just not that fun, even if the music was great.
Next week we do our routine birthday dinner at a restaurant. Two of our friends are very considerate and agree to join us. For that I am very grateful, it makes it less depressing. My guess is that brother will enjoy that experience more.
Wednesday, July 29, 2015
where's the food?
I showed up today (a Wednesday) at around 5:15pm, and brought my brother a mango smoothie. I figured I was too tired to take him out (it was after work) and that it was hot out if we sat outside, and I knew he really liked smoothies. I also knew I might be interrupting his dinner, and that he has a tendency to not finish; as soon as I get there he gets up immediately to go somewhere else. He is very private and doesn't like to share conversation about himself with others.
There was a new seating arrangement at his dinner table. Two tables of four had been pulled together, and it looked like a nice community of residents. But much to my surprise, I saw his plate was empty and clean, and so were several others. As usual, he immediately got up.
So I asked him what was going on, and one of the other residents, a woman, who seemed pretty articulate compared to the other residents, told me that they were serving chicken that night and had run out of the meat.
There is an ongoing issue that because my brother's table is farthest away from the serving area, that this table always gets served last, and my brother has raised this many times at "care" meetings, meetings the nursing home is required to hold with residents and their families to discuss care issues.
He was really angry. Apparently he had even gone down to the other floor to see if there was any extra chicken, but there wasn't. I told him he had to eat something or that I was just going to leave. This tactic didn't work. So I walked over the the servers and asked what had happened. They said they had run out of the entree and offered sandwich food, but the my brother had refused.
I asked them for a turkey sandwich and the vegetables which frankly, looked pretty sick, and they saran wrapped the food on a plate and we took it outside (my brother carried on about the vegetables so I just returned them). Once outside he calmed down a bit, But he said something I really took to heart. He said that he thought it would be great to have a recording device to record what the staff said and did, that that would get them in trouble. I thought about it and mentioned what would be really good was if residents could take videos like you see of police brutality (but I don't want to imply that's happening at this nursing home, it's just that if you knew you were being filmed, you would probably be extra careful in the way you related to the residents.) It was sad to me that my brother, because of his disabilities, wouldn't be able to operate either a recording device or a smart phone/camera. I thought his remark was pretty insightful. He range of intelligence versus his intelligence disabilities always catches me in surprise, even thought I have known him for more than 60 years.
He also mentioned that he wished I had taken him out for dinner tonight. I don't usually do that during the week unless my husband goes with me because it's some effort, both physically and emotionally. I did feel pretty guilty once he said it.
There was a new seating arrangement at his dinner table. Two tables of four had been pulled together, and it looked like a nice community of residents. But much to my surprise, I saw his plate was empty and clean, and so were several others. As usual, he immediately got up.
So I asked him what was going on, and one of the other residents, a woman, who seemed pretty articulate compared to the other residents, told me that they were serving chicken that night and had run out of the meat.
There is an ongoing issue that because my brother's table is farthest away from the serving area, that this table always gets served last, and my brother has raised this many times at "care" meetings, meetings the nursing home is required to hold with residents and their families to discuss care issues.
He was really angry. Apparently he had even gone down to the other floor to see if there was any extra chicken, but there wasn't. I told him he had to eat something or that I was just going to leave. This tactic didn't work. So I walked over the the servers and asked what had happened. They said they had run out of the entree and offered sandwich food, but the my brother had refused.
I asked them for a turkey sandwich and the vegetables which frankly, looked pretty sick, and they saran wrapped the food on a plate and we took it outside (my brother carried on about the vegetables so I just returned them). Once outside he calmed down a bit, But he said something I really took to heart. He said that he thought it would be great to have a recording device to record what the staff said and did, that that would get them in trouble. I thought about it and mentioned what would be really good was if residents could take videos like you see of police brutality (but I don't want to imply that's happening at this nursing home, it's just that if you knew you were being filmed, you would probably be extra careful in the way you related to the residents.) It was sad to me that my brother, because of his disabilities, wouldn't be able to operate either a recording device or a smart phone/camera. I thought his remark was pretty insightful. He range of intelligence versus his intelligence disabilities always catches me in surprise, even thought I have known him for more than 60 years.
He also mentioned that he wished I had taken him out for dinner tonight. I don't usually do that during the week unless my husband goes with me because it's some effort, both physically and emotionally. I did feel pretty guilty once he said it.
Saturday, May 9, 2015
things are good
Not a whole lot to report today. My husband and I took my brother out for breakfast today. We always go to the International House of Pancakes, especially since the restaurant we used to go to in the summer which had outdoor seating has closed. I need to find somewhere else where we can sit outside, because my brother is indoors so, so much.
My brother was chipper. He told me about an article he had read in the Chicago Tribune that suggested that the Dan Draper character in Mad Men was based on D.B. Cooper, who he thinks was aan outlaw who disappeared with a lot of loot. It always amazes me about the kind of information my brother picks up, considering he is intellectually impaired. So then I asked him if he had ever watched the show and he said no. Go figure. I am intrigued about all this so as soon as I get off the blog, I'm going to the Tribune website to check out the story.
I'll take what I can get. No news is good news when it comes to my brother.
My brother was chipper. He told me about an article he had read in the Chicago Tribune that suggested that the Dan Draper character in Mad Men was based on D.B. Cooper, who he thinks was aan outlaw who disappeared with a lot of loot. It always amazes me about the kind of information my brother picks up, considering he is intellectually impaired. So then I asked him if he had ever watched the show and he said no. Go figure. I am intrigued about all this so as soon as I get off the blog, I'm going to the Tribune website to check out the story.
I'll take what I can get. No news is good news when it comes to my brother.
Sunday, April 26, 2015
go figure
I saw my brother again yesterday, with my husband, and my brother is back to his old self, albeit 8 lbs less. Go figure.
Sunday, April 19, 2015
things looking a bit better
So right after I have written my most glum blog ever, my husband and I go to see my brother for our usuall Saturday breakfast. He's better! He's not exactlya spring chicken, but he's was a lert and in a good mood. His walking seemed ok. His gurgle was gone.
Well, his gurgle was gone except for the last 15 minutes. We took him to Walgreens because we needed milk and cash, and he decided he wanted deodorant. I have no idea why, he has never used it before (and he doesn't smell either, most of the time, both me and him are lucky that way).
At the end of the excursion the gurgle/hoarseness started coming back. Just another reminder to enjoy each day as it comes.
Well, his gurgle was gone except for the last 15 minutes. We took him to Walgreens because we needed milk and cash, and he decided he wanted deodorant. I have no idea why, he has never used it before (and he doesn't smell either, most of the time, both me and him are lucky that way).
At the end of the excursion the gurgle/hoarseness started coming back. Just another reminder to enjoy each day as it comes.
Friday, April 17, 2015
concerned and sad
I am feeling pretty sad about my brother. I don't know if I am overreacting or not, but I am having a very hard time watching his slow, but unrelenting, decline in health.
I think it was about 10 years ago that I noticed he was having a hard time getting out of his chair. He simply didn't have the strength to do it easily.
A lot has happened since then. Both of our parents have died, my brother developed a-fib, he has gone septic several times, and suffers from pneumonia many times a year. He has had a stroke, and probably several tias. He has been in the ICU 3-4 times. I have stopped counting the times that he has fallen.
Now, since the holidays, he seems that he is more in decline. He fell around that time, either from balance problems, a TIA, and maybe he hit his head falling, who knows, I wasn't there.
But his processing time is notably slower and he has lost 8 lbs in the last two months. He has stopped eating lunch. He says it's for two reasons: the food is no good, and his various maladies mean the food is not good for him. He says it is too starchy, which it may be, Never mind that it's the same kitchen/chefs that prepare lunch and dinner.
I have talked to his nurse practitioner who has run blood tests, and everything shows no change. She has offered an anti-depressant to increase his appetite, but it will make him drowsy, and I want to avoid that if possible.
I'm also ambivalent about how much intervention to offer him. I want to offer him as much intervention as anyone else would get, but I also have strong feelings about making sure his quality of life stays as high as possible, which means not asking for invasive procedures if they can be avoided, especially if the test is just to know what the problem is and then there is no treatment available.
I am worried that he might have cancer. I can't imagine giving him chemo. If he starts throwing up he will get dehydrated and his blood pressure will drop and he will end up in the ICU. This is a terrible decision that you have to make for yourself and he is not capable, I know he will want me to decide for him. I'm hoping the problem is his heart, not cancer.
I have decided to just concentrate on helping him enjoy his life as possible until he has his next crisis that where he ends up in the hospital. Then we shall see.
I think it was about 10 years ago that I noticed he was having a hard time getting out of his chair. He simply didn't have the strength to do it easily.
A lot has happened since then. Both of our parents have died, my brother developed a-fib, he has gone septic several times, and suffers from pneumonia many times a year. He has had a stroke, and probably several tias. He has been in the ICU 3-4 times. I have stopped counting the times that he has fallen.
Now, since the holidays, he seems that he is more in decline. He fell around that time, either from balance problems, a TIA, and maybe he hit his head falling, who knows, I wasn't there.
But his processing time is notably slower and he has lost 8 lbs in the last two months. He has stopped eating lunch. He says it's for two reasons: the food is no good, and his various maladies mean the food is not good for him. He says it is too starchy, which it may be, Never mind that it's the same kitchen/chefs that prepare lunch and dinner.
I have talked to his nurse practitioner who has run blood tests, and everything shows no change. She has offered an anti-depressant to increase his appetite, but it will make him drowsy, and I want to avoid that if possible.
I'm also ambivalent about how much intervention to offer him. I want to offer him as much intervention as anyone else would get, but I also have strong feelings about making sure his quality of life stays as high as possible, which means not asking for invasive procedures if they can be avoided, especially if the test is just to know what the problem is and then there is no treatment available.
I am worried that he might have cancer. I can't imagine giving him chemo. If he starts throwing up he will get dehydrated and his blood pressure will drop and he will end up in the ICU. This is a terrible decision that you have to make for yourself and he is not capable, I know he will want me to decide for him. I'm hoping the problem is his heart, not cancer.
I have decided to just concentrate on helping him enjoy his life as possible until he has his next crisis that where he ends up in the hospital. Then we shall see.
Sunday, April 12, 2015
not eating
My brother has lost 8 pounds in the last two months. No one seems to know why. The nurse practitioner has ordered blood tests for him and they have come back normal except for protein which is just a bit low.
When I take him out for a meal, he eats well. But he is skipping lunch a lot. He says it's because he doesn't like the food. He is a bit crazy about food, insisting that this and that isn't good for people with irritable bowel, heart conditions, etc. We have gone round and round the track in regards to the fact that he can eat most of anything if he does it in moderation.
He seems gaunt and weaker since the holidays. Not a huge amount, but it's noticeable. Right after the holidays, he fell. I am wondering if he had a TIA or if he hit his head when he fell. I had him in PT, but that is over now. He is a bit stronger, but not where he was earlier in the year.
I am reluctant to start taking him on a round of doctors. I am ambivalent about getting him involved in a bunch of tests that won't lead to any cure.
Some of my doctor friends say it is part of the course of events that people start eating less and less when it is their time. This is hard to deal with because my brother isn't in his eighties, he is in his sixties. If you look at him, however, he acts and looks like an octogenarian.
I am still mulling over a course of action. I am mainly thinking that things just have to percolate until it becomes more clear what the problem is.
My main concern is that if he continues to lose weight, he is going to lose even more muscle mass and end up in a wheel chair pretty quickly. I realize that because of his cerebral palsy, that is a likely outcome in the long run, but I dread it. I am thinking about how it is going to be really difficult to take him to places once he is wheel chair bound.
When I take him out for a meal, he eats well. But he is skipping lunch a lot. He says it's because he doesn't like the food. He is a bit crazy about food, insisting that this and that isn't good for people with irritable bowel, heart conditions, etc. We have gone round and round the track in regards to the fact that he can eat most of anything if he does it in moderation.
He seems gaunt and weaker since the holidays. Not a huge amount, but it's noticeable. Right after the holidays, he fell. I am wondering if he had a TIA or if he hit his head when he fell. I had him in PT, but that is over now. He is a bit stronger, but not where he was earlier in the year.
I am reluctant to start taking him on a round of doctors. I am ambivalent about getting him involved in a bunch of tests that won't lead to any cure.
Some of my doctor friends say it is part of the course of events that people start eating less and less when it is their time. This is hard to deal with because my brother isn't in his eighties, he is in his sixties. If you look at him, however, he acts and looks like an octogenarian.
I am still mulling over a course of action. I am mainly thinking that things just have to percolate until it becomes more clear what the problem is.
My main concern is that if he continues to lose weight, he is going to lose even more muscle mass and end up in a wheel chair pretty quickly. I realize that because of his cerebral palsy, that is a likely outcome in the long run, but I dread it. I am thinking about how it is going to be really difficult to take him to places once he is wheel chair bound.
Friday, March 13, 2015
still concerned
well, at first I thought my brother was getting a bit better. He is, in that his mental state seems a little more alert. But he is really dragging a lot. Then he told me that his physical therapy only goes for 15 minutes. I don't know if this is true or not, so I need to call and find out. I am going away for a little more than a week and I am worried about what I'm going to find when I get back, assuming that he doesn't get sick while I'm away.
I plan to see him tomorrow and will look him over carefully.
I plan to see him tomorrow and will look him over carefully.
Sunday, February 22, 2015
concern
My husband and I took my brother out to the movies and dinner last night. I am concerned. He is listless and didn't say much. He seems weak; he was able to walk ok with his walker but when I got him into his movie seat, he almost fell twice, I had to catch him.
I have talked this over with my husband. I am going to pay out of pocket to purchase a months worth of physical therapy. It's going to be expensive. The therapy will not only strengthen him but will force staff to interact with him. It's worth the money to see if he is permanently getting weaker or not. I hope it works.
It makes me angry that nursing homes aren't forced to provide good exercise for their residents, and that medicaid won't pay for it.
I have talked this over with my husband. I am going to pay out of pocket to purchase a months worth of physical therapy. It's going to be expensive. The therapy will not only strengthen him but will force staff to interact with him. It's worth the money to see if he is permanently getting weaker or not. I hope it works.
It makes me angry that nursing homes aren't forced to provide good exercise for their residents, and that medicaid won't pay for it.
Friday, February 20, 2015
winter 2015
Winter is hard on my brother. It's very cold outside and there's not much going on at the nursing home. It's hard for me to maneuver him in the snow. My husband understands this and has been helping me out alot.
I am pretty sure my brother is sitting around all slumped over in his chair not doing much. I think this because I see him pretty listless and hunched over. This has happened in the past but he has usually picked up in about half hour and seems his normal self.
In the last month or so, this doesn't seem to be the case. There is going to be a small break in the weather tomorrow (up to almost 30 degreees) and I'm planning on taking him out for dinner and the movies.
I am pretty sure my brother is sitting around all slumped over in his chair not doing much. I think this because I see him pretty listless and hunched over. This has happened in the past but he has usually picked up in about half hour and seems his normal self.
In the last month or so, this doesn't seem to be the case. There is going to be a small break in the weather tomorrow (up to almost 30 degreees) and I'm planning on taking him out for dinner and the movies.
Sunday, January 25, 2015
current events
Last week, I was watching President Obamas 'state of the union address and got a call from the nursing home. the person was quite insistent that she speak to me, that it had to be me and no one else. I thought, oh boy, what bad thing has happened?
It turned out that my brother fell in the bathroom, but that he was ok. My husband went the next day to check him out and confirmed that he wasn't in crisis.
Of course, you always wonder why he fell. Was it afib again? Just balance issues? Or did he have another TIA?
I saw him for breakfast this Saturday. He now is the leader of the current events discussion group. He says that people are "forced" to come, and that they don't talk. I believe that they don't talk because most of them don't talk, period. I asked him if it was hard to fill up an hour with current events and he said no.
I am very curious about what it's like. I have never heard my brother talk for more that 3-4 sentences at a time.
It turned out that my brother fell in the bathroom, but that he was ok. My husband went the next day to check him out and confirmed that he wasn't in crisis.
Of course, you always wonder why he fell. Was it afib again? Just balance issues? Or did he have another TIA?
I saw him for breakfast this Saturday. He now is the leader of the current events discussion group. He says that people are "forced" to come, and that they don't talk. I believe that they don't talk because most of them don't talk, period. I asked him if it was hard to fill up an hour with current events and he said no.
I am very curious about what it's like. I have never heard my brother talk for more that 3-4 sentences at a time.
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