life of pi

Last night, Christmas Eve, we took my brother out for Chinese dinner and a movie.  That's what Jewish people do on Christmas Eve.  He did ok at the dinner.  In fact, he told us he likes spicy food, and he doesn't get it at the nursing home. 

The movie was "Life of Pi".  It was in 3-D and he had to wear glasses.  He didn't seem to like the glasses.  After the movie I asked him what the problem was.  I didn't get a clear answer.  I wonder what his brain does with the images, and I guess I will never know.  When I asked him if he liked the movie (he had wanted to see either Lincoln, which we had seen, or the one on FDR, which none of us wanted to see) he said it was the strangest movie he had ever seen.  Well, it was pretty strange, I'll vouch for that!  But I really liked it.

It was a nice evening, despite the fact that there was a lot of down time between dinner and the movie.  If he hadn't of been with us, we could have gone for a walk, or stopped for coffee somewhere.  But I shouldn't complain.  At least he is pretty healthy right now.  I feel fine about leaving down for  4-5 days, we are going to Minnesota to visit with family and friends. 

This time is a little depressing for me.  I remember the holidays the last several years when my parents and my brother were all so sick.  My mother had really liked reading the book, "The Life of Pi" and I couldn't read it with her because she was dying when she was reading it and I was stretched to the limit, visiting her and taking care of my family.  After that, I just couldn't bear to read it, because I missed her so much.  I am happy, though, that enough time has passed so I can see the movie, and now maybe I can find the strength to read the book.

It is strange to have my life back together and not to have to worry so much or feel so much loss.  I feel a little guilty about enjoying myself while my brother is stuck in a nursing home.  But there is no way I could keep him busy and occupied because he can't do much of anything since his mobility is so limited.

Holidays are hard.

redeemed!

I took by bother out for breakfast yesterday.  It was a rainy day, and I got a good parking space in the parking lot where he didn't have to walk alot. When we sat down to have breakfast, I noticed that my reading glasses were no longer in my pocket where I had put them.

I mentioned to my brother that I had misplaced my glasses and was going back to the car to look for them  He told me that they were not in the car because he had noticed they had dropped out of my pocket onto the ground.

I asked him why he didn't tell me when he saw the event take place.  He gave me a very blank look.

This is not the first time something like this has happened.  I think it is part of my brother's autism, he just never would occur to him that he should have told me.  Anyway I went back out to look for my glasses and got my pants all wet when I got down on my hands and knees to look for them to see if they were under the car.  No glasses.

When we left, I pulled the car straight out so in case they were there so I wouldn't crush them.   Mind you, this is a very busy parking lot and there was already a big black SUB inpatiently waiting for me as I slowly backed up, anxiously looking for the glasses.  No glasses.

But all of a sudden, my brother said, "They're right there".  And they were.  With my eyesight, I would have never seen them.  But he did.  Redeemed!

chipper

I took my brother out for lunch today.  I asked him how he was doing.  He said chipper. I asked him what that meant.  He said better than lovely.  Then I asked him why.  He said he had gotten his act together!

He also had gotten a haircut, and I was pleased to see he was only charged $16 instead of the $35 that the old nursing home used to charge.  I mentioned to him that next time he should get his moustache trimmed too, it's getting quite bushy.  He nodded in agreement.

He did look pretty good today.  I am trying to reconcile that with the gurgling I heard earlier this week.  I was visiting later in the day with a doctor friend, who in passing (talking about his own heart trouble scare) mentioned gurgling.  So I asked him how bad should the gurgling be before I start having a fit at the nursing home.  He told me to look for shortness of breath at the same time and weight gain.  (It is very difficult to see swelling of the ankles from water retention because my brothers legs are so thin, and a bit distorted,  in the first place.)  I was thinking today how I was once told that the life expectancy of someone who has congestive heart failure averages out to about five years after diagnoses.  My brother has already hit six and seems to be ok!

another gurgle

My husband and I took my brother out for dinner last night at Panera.  I noticed he had a pretty significant gurgle so I asked the nurse practitioner to look at him.  She just called.  She said his lungs sounded pretty clear and that where his pneumonia that he had last month occurred suggested aspiration. 

This is not the first time I have heard this theory.  I heard it a lot when he was throwing up a lot several years ago.  That time, it turned out to be infected gall bladder stones.  So I kind of poo-pooed it, and let her know that gurgling in the past has been a major sign of impending congestive heart failure.

But his vitals are good and his lungs sound good, and of course, today, he had no gurgle.  So only time will tell.

a littletired

I took my brother out for breakfast this Saturday.  He seemed a bit quiet, like he wasn't feeling quite up to speed.  I kept on asking him how he felt, but he said he was ok.  He also said he had slept well the night before.  Something just wasn't quite right.

thanksgiving redux

I took my brother to my son's long time girlfriend's parents' house for Thanksgiving.  They have been a couple for almost 10 years.  We have been doing Thanksgiving for about 6 years.  Last year they came to my house, this year we went to theirs.

My only issue with my brother is fear that he is going to wet their furniture.  He doesn't seem to get any cues that he should let someone know when his diaper is full.  This time, I figured it out because he really smelled.  Fortunately, he was sitting on a folding chair so there was no material to stain or get wet.  My husband was nice enough to take him to the bathroom and get him changed.  Then he went home.  It is one of those gender things, I guess, and if I can, I am going to take advantage of it. 

Today, my son, daughter and my husband took him to a International House of Pancakes for breakfast.  He seemed to have a good time.  I told him I would see him Wednesday night.  I guess it's back to the routine.

james bond

My husband and I took my brother to go see James Bond Friday night.  It was a stupid movie, but I think we all enjoyed it.  I think what my brother liked the most is was that he was going to be the last person on his floor in bed!

The antibiotics seems to be working and his hoarseness is gone.  He will be coming to my house for Thanksgiving, and then we are going to my son's girlfriend's parents' house for dinner.  I am hoping that there will be no diaper/urination incidents.  I did not take him out for breakfast this weekend, and it was really nice to sleep late on Saturday.  However, I am feeling a little guilty.  But I keep on telling myself that we will see him over Thanksgiving weekend.  I expect that my kids will come with me for breakfast on Saturday (or Sunday) and that would be great.

My only nagging worry is the extra information that Medicaid asked for.  My brother is on a special workers with disabilities program that very few State workers seem to know about.  I am not going to be surprised if I have to take off work to go talk to the State.

He also needs a lot of dental work, at least 3 teeth pulled, etc.  I am already prepared to fork over huge sums of money to take care of his teeth, but I feel there is no choice.  I have asked that the nurses start brushing his teeth, we will see if that happens.

pneumonia and another birthday party

It turns out I was right.  My brother does have pneumonia.  But it wasmuch easier to resolve at the new nursing home than at the old one.  Now that there is a nurse practitioner, I called her and asked her to listen to my brother's lungs.  She was a bit skeptical, because she said hoarseness could be caused by his medications because they dried him up.  But she did not that he seemed a bit out of breath just walking around and she ordered an xray and concluded he did have pneumonia.  I actually believe she will probably notice these things on her own once she gets to know him better.  I also asked her how much he weighed (147 lbs) and mentioned to her that in my opinion, anything over 150 lb. should be an action level, that some kind of intervention of congestive heart failure needed to be considered.   I also asked for weekly weighings and she agreed to order that.

Meanwhile, the nursing home sent me an invitation to a party for November birthdays and my brother actually invited me to come.  It was at a very inconvenient time, 2 pm, right smack in the middle of the day, and wasn't good because I have out of town guests staying with me.  If they had given me sufficient notice, I would have asked them to come in a different weekend.  But everything is always done at a nursing home at the convenience of the staff.

I was lucky.  My brother and one of my very good friends came with me.  As my husband put it, the party was surreal. There were about 10-12 big tables with mainly people in wheelchairs sitting at them.  There were also a couple of rows of chairs which my group took.  As we sat there for about an hour, the place filled in with people in the kind of wheel chairs that are more like beds.

They had an entertainer, a nice guy who sang 1940s songs and military numbers (because it was also Veterans Day.)  It was kind of interesting and uplifting to watch people there kind of sing along (no one really knew the words) and move their feet to the music.  My brother seemed to enjoy it, as did I, just as an unusual, interesting experience.  They read off everyone's name who had a birthday in November (all women, by the way) and skipped my brother so I yelled out something about forgetting him, and then he interrupted and told the audience that he didn't want to be recognized for this birthday.  This is very typical.  But it was OK.

The birthday was a big success

My brother's birthday was a big success.  Even though my husband blew it and didn't get home in time (I was a little upset about it), we had a really nice time. I picked my brother up after work and we went to a California Pizza Kitchen for dinner.  He ordered salmon with some kind of spicy fricatash.  He really liked it.  Then I ordered a chocolate pie/cake type thing with whipped cream and a candle that we shared.  The manager gave it to us for free, which made it even better!

For once, he seemed appreciative of the gifts I got him.  I gave him a new shirt, brought in several old shirts that had been sitting in my house (the ones in the nursing home were getting a little raggedy) and also told him about some pants I had ordered him.  He was most pleased when I told him I had arranged to have the Chicago Sun-Times delivered to him daily.

Today, I took the day off from work and I took advantage of the fact that I could visit during the weekday and make some arrangements for him at the nursing home concerning the dentist, his cataract surgery, setting up an expense account for him, and most importantly, getting a power of attorney signed so that I can finally cash in the one remaining retirement annuity or something like that that he has.  The issue had always been that it was too hard to get the power of attorney notarized, and this nursing home has a notary public available, but of course, only during the times that I work.

I also got him signed up for two expeditions, one to go to Walgreens, and another to see a play.

A very successful day.  He was very pleasant, and I actually enjoyed seeing him.

birthday coming up

My brother's birthday is coming up. It's November 1.  I think this birthday will be a lot better than last years.  Last year, my brother was at the old nursing home and I don't think they did much for him on the day.  My husband and I took him out for dinner, but we didn't spend too much time with him, because we had so much driving to do back and forth.

This year, my husband is out of town.  I think he is supposed to get back in time, but you never know.  I plan on taking my brother out for dinner.  There is a very nice restaurant that he used to like going to, in a big shopping center, near his new nursing home.  I don't like the restaurant very much.  It's Italian, with very big portions, and I eat too much when I go.  But I don't care.  I am so happy that he is doing better, it's improved by attitude about taking care of him.

By coincidence, he will start a new HMO on his birthday, which means the nurse practitioner can start seeing him, which I have concluded is a good thing.  I don't think the nursing staff is capable about detecting changes in his congestive heart failure, but the nurse practitioner works on his floor.  I think it will be much easier to contact her when I think something might be going wrong.

Meanwhile, the new nursing home has just asked me to fill out a very long form for the State of Illinois so they will pay for his nursing care.  They want me to go back for five years and dig out bank records, tax forms, etc.   I am going to ask our case manager to help out and find out if we really have to do this form.

putting on weight

Yesterday, I took my brother out to breakfast.  He was a little agitated.  There were two reasons:  he saw a dentist and he had difficulty arranging for the newspaper to be delivered to him. 

My brother hasn't seen a dentist in about 3-4 years.  It was at the bottom of my list of things to get done for him, and the old nursing home had been monkeying around with the request for almost a year.  This new nursing home only took two weeks.  They have a visiting dentist, apparently with x-ray capabilities in the home.  My brother had been complaining about a chipped tooth (he has had several) so I wasn't surprised when he told me he was going to need a crown.  He teeth are pretty discolored, so the first thing they had to do was take x-rays, and he's scheduled to get his teeth cleaned.  I warned him it may take several appointments to get the teeth thoroughly cleaned because it had been so long.  My husband is concerned that the nursing home dentist is going to take advantage and rack up a bunch of bills.  He suggested that we take him to our dentist, or at least to another one, to get a second opinion.  I should also mention that is not clear if Medicaid is going to pay for dental treatment or not.  I am assuming not.  However, our parents left us some money for his care, and this seems like a very good thing to be spending money on.  Also, anything that is going to save me or my husband personal time is well worth it.  So I am going to call the nursing home on Monday and tell them to go through with it.

The second item he was concerned about was that there was some kind of hassle getting the Tribune delivered to his door.  Apparently he worked it out.  I think this is wonderful because he is so much more taking an  interest in the outside world.  He prefers the Sun-Times because it is in tabloid form and easier for him to physically use.  I didn't tell him, but I plan to get him a subscription to the Sun-Times for his birthday.

When I took him out, I noticed that I had difficulty zipping his jacket.  He mentioned to me that he had put on 5 lbs.  I suspect by next weekend I am going to have to assert myself and make sure that a doctor gives him a higher dosage of lasex for a while.  It always amazes me how I notice way before anyone else when his congestive heart failure is acting up.

a new man

My brother is so much more talkative.  He is like a new man.  I was thinking today about all the effort I made to keep him alive when he was in medical crises.  Now I am very glad I did.   At the time I wondered if it made sense to use a lot of modern medical intervention, that maybe I should let him "die" as nature intended.  But then I figured everyone else gets a chance to live longer with modern medicine, why shouldn't he get the same breaks.  When he first started living in a nursing home, both my husband and I felt that he wouldn't live more than a year. This was somewhat based on what his doctors were telling us.  Even after the first year at the old nursing home, his health seemed precarious, he had several bouts of congestive heart failure and pneumonia, and he "acted old", fairly listless, and very tired.

But if you saw him today after the move to the new nursing home, you wouldn't be thinking that anymore.  He wasn't hoarse today. He seemed like he was getting out of breath a bit, but he was quite chipper and pretty talkative (by his standards).  We talked about the Presidential debates, I read to him out of the paper about Jesse Jackson Jr's woes, and when we got back from breakfast, I helped him"paint" (he dripped fabric paint) on a white muslin square for the quilt that I making for my daughters.  (All our family members are contributing a square.)  He told me how he had gone to the guitar concert at the nursing home before.

Yesterday, I got a call from the social worker, who was sitting with my brother, to ask if we wanted him to join an HMO where a nurse practitioner who practices on his floor would handle his medical issues.  The presentation was pretty confusing.  Right now, if the nurses think he is getting sick, they are supposed to call a doctor and get orders.  On the other hand, they are telling me that the doctors only come into the nursing home and see patients every 3 months.  This ticks me off pretty much.  Why should they get paid by medicaid to go see patients for 5 minutes every 3 months, and not be expected to come to the nursing home if their patients are sick? I supposed their reimbursements from public aid make it not lucrative.  What a sick medical care system we have.  The short of it is that I asked the social worker to send me the paperwork so I could read about what we are signing up for.  Then I think about the fact that I am pretty well educated, my husband is in the medical care policy business, and we are pretty well informed, compared to most families.  What about the people who aren't?

Meanwhile, my brother wasn't hoarse, but he did seem out of breath, so I am going to keep an eye on him.  I am going out of town for the week for work, but I think he probably would not get that bad that quickly, if he is going into a decline.  I am going to ask my husband to go visit him while I am gone.

That's another good thing about the move.  Now that he is closer, my husband is going to visit him, mostly on his own, without me, which gives my brother more support.  Very good!

hoarse again

It's Wednesday night, and I'm already back from visiting my brother.  In fact, I noticed when I left that it was at about the same time that I was just arriving at the old nursing home.  My life is so much better.

My brother was in a good mood, but I noticed that he was hoarse.  When we were sitting outside, he mentioned that his pants were getting tight.  I casually asked when did that start, and he said about two weeks ago.  So I went to the front desk and asked to talk to his nurse on the 7th floor.  I told her I thought his congestive heart failure may be acting up again and asked her to check that out and also to look at his lungs.  I will call tomorrow to follow up.

It is perplexing to me why I am the first person to notice these symptoms and that the nursing staff doesn't notice.  And my husband went to visit my brother earlier in the day and didn't notice either.  It makes me feel like I can never leave town for very long, my brother's life would be in danger.

On a better note, it sounds like the nursing home listened to my brother when he first moved in and re-registered him to vote.  Now I just have to figure out if we have to get him an absentee ballot or what.  They also have a notary public in the building, which makes life a lot easier for financial dealings.

a good day

Today, a Sunday. I took my brother out for breakfast.  Now we go to a local International House of Pancakes.  It's not nearly as personalized as the family restaurant we used to go to, but my brother doesn't seem to mind. It was a little cold outside, so he probably is not going to be able to sit outside for very long.  However, he has been sitting outside a lot, you can tell because the top of his head is quite tan.

He says he has two male friends that he sits outside with. I think this is great.  I am really pleased that the nursing home managers let him roam wherever he wants to go within the building, it gives him much more independence.  I asked him if he had gone to play poker, he told me no because it was all women.  I encouraged him to go and told him the ladies would probably like the presence of a man and he seemed to perk up about that idea.

Today was also a good health day, he didn't need assistance in getting up from his seating position at any time.

This placed has a visiting dentist every other week and also a monthly audiologist visit, so I think my life is about to get much easier in regards to that too.  My brother really needs to see a dentist, I let it go because it seemed like there were so many other issues to deal with first.  Then about three months ago I signed him up for "dentist insurance" at the old nursing home.  Medicaid/Medicare was supposed to pick up for the cost, and the nursing home kept on forgetting to sign him up for a dental visit so he never had one.  Hopefully, this nursing home is much more together and he will actually see a dentist within the month.  I don't mind paying for it, he just needs to get it done.

His hearing aid went bad last week.  Thankfully, my husband was able to bring it in and it was fixed on the spot for $30.  Apparently I had let the insurance I have on the hearing aid go (I never got a bill to renew it), so I was glad it didn't cost much.  I have been thinking for a long time to get him another hearing aid because he breaks his at least once a year, and then he has to go without an aid for a while, which is really hard on him.  The only drawback is that these hearing aids cost at least $2000, and I am not happy with the audiologist my parents had been using for him.  Now I think I will contact the nursing home audiologist, and if problems ever develop, it can be taken care of within the nursing home structure.

I used to think that my brother only had one or more two years of life left before his heart failed, but now he is doing so much better I am rethinking what the likely scenarios are.

he's a new man!

My husband met me at the nursing home (it's Wednesday) and we took my brother out.  We had dinner, he had already eaten, so we bought him a coffee.

Today, I also arranged for him to get his own phone.  I was so surprised when he told me he had already used it to call his case manager.  He hasn't done that for about 3-4 years!  He proudly told us that they had poker games on Tuesday and that he was going to play.  He plans on listening to the musical acts that are brought in on Sundays.  We made arrangements for me to leave him cash so he could buy food at the cafe they have in the home.

This new place is run much more like assisted living with nursing care.  He has free run of the building, he can go outside to sit whenever he wants, they don't seem to care.  He says the nursing staff is pretty good.

The only problem I have seen so far is that they are not shaving him and he obviously hasn't had a shower in a while.  I plan to call tomorrow to discuss that.  It might have to do with the Jewish holidays and that they have been short staffed because of that, I'm not sure.  (It's interesting though, he says only two patients fasted  I think the patients are too unhealthy to fast, it would be dangerous.)  My brother says that there are not many activities because of the holidays.  I told him that there are a lot of them in September and October, and then the schedule thins out!!

My life is much better.  Even with taking him out, I got home faster than I would have going to visit him at the old home.

settling in

This week my brother moved to his permanent floor.  He is still feeling his way around, but he seems much more normal than he has been in a long time.  I took him out to an International House of Pancakes for breakfast today.  I remarked that we never got to say good by to the staff at the old restaurant.  He indicated he would like to go back and do so.  I told him, there had better be a good reason to drive out that way again, that I wouldn't be up for it for a while!

so far so good

My husband and I took my brother out for lunch today, after we saw a lawyer to redo our wills.

Things are looking pretty good.  My brother was sitting with other folks at a  lunch table, and he has been spending some time just sitting outside, which he never got to do at the old nursing home. Tomorrow he plans to sit in on a concert, where someone is coming in and playing the violin.   So far the staff seem much better educated and much more friendly.  The whole placed seems better staffed and the level of education is higher.

This is putting me in a really good mood.  I figure that the last place he was in was so much better than the one before that, I didn't have anything good to compare it to.  At the old place, the nursing staff was kind, but there was a huge language barrier and it was difficult to communicate.  Plus they were overworked and harried most of the time.

It's a beautiful fall day and now I have the time to actually enjoy it.  Yippee!

moved

My brother moved today, from the old nursing home to the new one.  My husband and  I took a good chunk of the day off to help him move.  When I got to the old nursing home, they hadn't started any of the paperwork or packed up his stuff, but it only took about an hour.  Part of the problem with this place is that there are a lot of language barriers.  The staff means well but it is difficult to communicate sometimes.  There was not much of a good bye, a few of the staff came by and hugged, but it was not much.

We took my brother out to a Panera that is in a shopping center close to the new nursing home. It was kind of comforting to be somewhere we had been many times before, most specially with our parents.  My brother was a lot calmer than I thought he was going to be.

When we got to the new nursing home, the admissions person was not ready for us.  We sat there for about 10 minutes, and then they told us just to go up to his room and to wait for her.  The new room is a single and much nicer than the old room, but my brother didn't think so.  He felt that the room was smaller (it's not, it's just not a double).  The lighting is much better and he has a window that he can look out of.  There is a chair in his room so I can now sit with him if I want to.  But I think he likes the sociability of having a roommate (even though his old roommate was very sick and they hardly spoke).

Someone came in to take his vitals, and then left.  I was told to unpack his bag and put his stuff on the bed so that it could be inventoried, which I did.  There wasn't much for me to do, so we walked around and explored.  There are a lot more social spaces in this new nursing home, just not a lot of patients.  They have temporarily put him on a rehab floor instead of with permanent residents, which is good and bad.  On the one had, the patients are more together mentally, but on the other hand, there doesn't seem like there is much of a community.  He is supposed to be moved to a different floor when a bed opens up.

It was a beautiful day.  Patients have a lot more freedom to move around in the new nursing home.  I left him sitting outside by the front door.  There were four or five patients just sitting there.  I am hoping that in the long run, he will be able to make friends.

It took me 12 minutes to get home, instead of 45.  That made me smile all over!!

he's in a good mood

The new nursing home has been very slow in getting my brother assessed.  So far they say it looks good but they are not committing until they send out a team to the old nursing home to evaluate  him.  I asked them what was taking so long and they said because they are taking in a lot of people at once and because of the labor day holiday.

I am a bit concerned about what this is doing to my brother.  He doesn't like change.  But so far, he seems like he has perked up a bit.  I think he might even be looking forward to a change, because life at his home is so boring and dull.  I think he might even need to change environments every so often, just to get some stimulus. 

Meanwhile, on Sunday he was in a good mood, even though he told me the new nursing home was too Jewish Orthodox.  I asked him what he meant and he told me that all the men had yarmulkes on.  I assured him that not all the folks in the home were Orthodox.  Then we talked about the fact that the nursing home had told me he was going to be placed in a pod with people who were more alert and he was really pleased about that.

I am thinking that I need to take off work and be there when he is evaluated.  The stakes are too high to have hims tart freaking out with strangers.   The trouble is that I have a very busy week and work.  I hope I can work something out.

some exiciting news

I am in California, with my husband, dropping my daughter off at Berkeley, where she will start college tomorrow.  My son lives in San Francisco, so it has been an interesting interlude.

I was in Sacramento, visiting an old friend when my cell phone rang.  It was the nursing home that is nearer to my house,calling to say that they were starting a new program for patients who were higher end.  They wanted to them to live on the third floor, which is usually reserved for the patients who need the most help  The idea would be that the new patients, who would live in a "pod", would be able to do the activities on the second floor which has the patients which are more mobile and alert.  The pod residents would be able to switch over to the second floor as beds opened up.

I suppose this is happening for some internal reason,like they can't keep their third floor full  I am hoping that this will be ok for my brother.  I see it as a way of getting him in the door of this nursing home.  This is the same one that I wrote bout earlier that told me that there was no way to ever get him in because he was public aid.

Since I was in California, I called our case manager and asked her to assist in taking my brother over to this new home to see if he likes it  Also the new nursing home send staff over to the old home to evaluate him.  So nothing is a done deal.

I am having fantasies of 15 minute drives instead of 45 minute drives each way, and being able to drive him around in our town, which is also the one he has lived in most of his life.  I am thinking holidays are going to much, much easier,  and that I can have him over to my house more often on the weekend.  I am thinking that moving him to a new nursing home may be moer stimulating for him, right now, he is spending too much time sleeping and staring into space.

I am hoping he will be on his best behavior as he is interviewed, etc.

Wish us luck!

to my readers

I was just looking over the statistics for my blog, and I was pretty gratified to see that someone is actually reading my posts now and then.  But I am a little surprised that no one every writes back!

That's ok, because I mainly write for myself, I started this when my brother was in medical crisis (he's not anymore) and it was, andis, very therapeutic for me to just get my feelings out.  When I am upset about something in relationship to my brother, it makes me feel better just to get it on paper.

I also feel it's a good way to document that relationship with the nursing home, in case there is ever some legal issue that arises. 

I'm writing this particular post because I know that at siblings conferences this blog is sometimes mentioned.  I just wanted to invite more people to blog about their experiences, both for themselves and for others, too.

I know this sounds pretty morbid, but I am happy there is a written record of this experience that either I and/or my family members will have to remember my brother by.  It's a human life, and it's important to document the experience.

My brother has had a very hard life, and he doesn't complain much.  It doesn't take much to make him happy.  I just want people to know that.

withdrawal

Today I brought my daughter to visit my brother one last time before she goes to college.  We came into the activity room where my brother often sits and he was there with his head on the table, totally out of it.  However, as soon as we came into the room he came out of the withdrawl, and we had a nice breakfast with him, discussing the Olympics.  He seems to be watching a bit of it, and I think he is reading about the results in the paper.  When he said good-bye to my daughter, he thanked her for coming and made some sweet remarks about wishing her success in college.

I ran into his new friend, who has memory issues, and has asked me twice what my name is and who I am.  I am wondering if this new friend has something to do with his withdrawal from the world.  Before, he was spending time with some of the more alert patients.

His withdrawal from activities and the world is really starting to bother me.  I am thinking I really need to get him into another nursing home, just because he needs the stimulus of something new.

I found out about one this week that takes public aid that would cut the drive down by about 1/3.  It still is kind of far away, but it would be better.  I just hate to move him and then find out there's another one that would be just as good but closer.

Also, I am not optimistic about any nursing home taking him unless it's straight from a hospital.  I think the nursing homes are prejudiced against him because of his age and his developmental disabilities, they think he is going to be too much to take care of (he actually is one of the patients who needs the least care, at least in the facility he is in right now.)  But I feel I need to try.

This week, I am about to start a two week vacation, which should be a little stressful because we are taking my daughter out to college and that's a big change.  I am a little nervous about leaving him for so long, this is the longest I have been gone since my parents became ill and eventually passed away.  I have prepared a two page document for the nursing home and his case manager with phone numbers, etc., and I have two wonderful friends who have volunteered to deal with an emergency, should it happen, until I get home.  Cross your fingers!

is he depressed

I went to visit my brother last Saturday, to take him out for breakfast.  When I came into the nursing home, the receptionist, who also doubles as a part-time activities person, told me that my brother has stopped sitting in the communal activities room and instead sits by the window near the elevator.
 After further investigation, I heard the following story:  it turns out that there was a patient who had a family of six or so visiting her every day.  They would bring food in for the patient and sit in the activities room all day, driving out the higher functional patients, including my brother.  The patient with the family has since left the nursing home.  But the figher functioning patients were disgruntled and found that the activities were boring.  Part of the problem is that several of the higher functioning patients have passed away, and there weren't enough higher functioning patients around to play trivia games, etc.

Eventually the disgruntled patients were enticed back into the activities room and continue to be involved in activities.  That is, except for my brother.

At breakfast, I brought this up.  I mentioned that I was concerned that if he sat by himself all day long and just spaced out, it was going to shorten his life span.  He seemed to listen to that.

On my way out, I suggested to the receptionist/activities person that they ask my brother to play the role of helper in the activities.  He likes to help, he likes the praise, and he likes to feel superior to others.  She said she would raise it with the other workers.

I have been out of town this week for work, but when I get back, I mean to call the main activities person and talk to her about this.

Meanwhile, my brother just doesn't look right.  He has bags under his eyes and is dragging around.  At first I thought this was because he had a bought of congestive heart failure, bowel issues, and then pneumonia, which is enough for anyone not to feel right.  But right now, I am wondering if it's depression.  If necessary, I will ask them to put him on anti-depression drugs, but I think that's a last resort.  There's no way he's going to get therapy at this nursing home, that's for sure though.

hoarse again

I took my brother out for breakfast last Saturday.  He looked pretty good, he was back to his normal weight, he didn't look as swollen as he has.  And he was in pretty good spirits, although I had a very difficult time finding anything interesting to talk with him about. 

But he seems like he is hoarse again.  I am anxious to visit him tomorrow, Wednesday, to see how he is doing.

independence day

My husband and I went to visit my brother on the Fourth of July.  He looked much better and he was no longer hoarse.  He was quite chipper actually.  We took him out for breakfast and it was quite relaxing.  In fact, at the end of the day, we both identified it as the nicest part of the day.

gurgle

My schedule has been kind of crazy lately, what with spending two weekends in a row driving my daughter back and forth to camp (twice) and going to DC for my job.  So I made an effort to see my brother on Sunday morning to take him to breakfast.  He didn't look great, but there's not a lot I can put my finger on.  He just looks like he has less energy these days.  And he still is hoars, and seems to have a permanent gurgle now.

I got a call from the nursing home that he has signed up for the next excursion they have planned which is good.  The fourth of july is on a Wednesday this year, which prevents any three day holiday, and I am spending some time thinking about what to do about my brother.  I really don't want to spend my one day holiday visiting, but on the other hand, I think he is going to be lonely.

crisis over (at least for now)

The day after the nursing home called me to tell me they had put my brother in isolation because he had loose stools, he was back out of isolation  It sounds like this was a false alarm.

This weekend I had to go take my daughter up to Michigan so she could be  counselor at camp.  I got back later Saturday afternoon, but my husband and I decided to go to the movies, and figured we might as well take my brother.  He would enjoy it, and then I wouldn't have to spend my Sunday visiting him.  So we did.

The movie was the Most Splendid Marigold Hotel (or something like that).  It was about British senior citizens who retire in Indian because it's cheaper to live there.  The entire audience was pretty old.  We got to the movies just in time and were able to snag the last seats for the handicapped.  But there were lots of people there in walkers, and a lot more senior citizens who were women than men.  I notice this kind of stuff a lot more now as I am getting closer and closer to that age.

diarrhea

Today the nursing home called me to tell me that my brother has diarrhea and loose bowels.  When the phone rings and they say it is the nursing home your stomach always clenches.  They told me they had to put him in isolation until they find out if he has some kind of infection, but that his stool was so runny they couldn't get a sample yet.  I called him and he said he was ok, he was feeling fine. 

I have to take my daughter up to her counseling job, about 4 hours away, 8 hours round trip, tomorrow evening and the next morning.  I hope a crisis doesn't develop while I am away.

feeling better

My son is in town for my daughter's graduation.  I took him with me on Friday morning to have breakfast/lunch with my brother.  We surprised him. My brother had lsot about 7-8 lbs from the increased lasex and looked a lot better, and the gurgle was almost gone.  He was in a good mood, and talkative, at least for him.

I felt guilty because I am not inviting him to the graduation festivities.  It is just too much work, too much driving, and too much caretaking, too much special services for his disabilities.  But I feel bad about it.  Not bad enough to include him, just bad.

another bout of congestive heart failure

I worried about it for several days, and sure enough, my brother is dealing with another bout of congestive heart failure.  It is hard to tell with him because the standard test, to look at the ankles for swelling is difficult with him because his ankles and feet are so skinny and very distorted.  But his face looked pretty full and he was gurgling when he talked. 

At breakfast, I asked him when the last time he was weighed and he said last week, and then, after much prodding he told me he weighted 149 lbs.  He also said he had mentioned to the nurses that he was hoarse and asked if he should do something about it, and they told him he was ok.  (It needs to be noted that he often gets information like this very messed up and that you never know what he really weighs or what he said to someone or what they said back.)

I was going to let it go for another week, but I noticed he was a bit out of breath from getting back into the car, so when we got back to the nursing home, I asked the nurse to look at the record of his weights, and sure enough, he weighed 152 lbs on May 3.  They are definitely supposed to be doing something when he gets into the high 140's.  So I asked that he be weighed again and then I left, and told them I would call back later in the afternoon to get results.

Within 5 minutes they called back, said he weighed 155 lbs, had already spoken to the doctor, and were putting him on higher doses of Lasex.  I spoke of my concern that they need to keep a close eye on his blood pressure, because it has been know to drop precipitously from dehydration, and that he also starts fainting, and that I didn't want' him to start breaking bones, which has also happened.  The nurse seemed very understanding and assured me they would be taking his blood pressure more often.

I have to keep an eye on this, and it nagging at me.  He is supposed to be weighed so that they can catch the congestive heart failure before it gets to crisis stage, and what's the point if they ignore the signals?  It makes me feel like I can never go out of town for any extended period of time without worrying, and that's not right.

birthday surprise

Last Friday was my 60th birthday.  My brother called me and sang me the happy birthday song.  I was so touched.  When I came on Saturday to visit with him, it turned out he even had a present for me (body lotion and a luggage tag) and a card, that he had bought at the nursing home store.  I didn't even know they had a store, so I wasn't expecting anything at all.  It was so sweet, tears came to my eyes.  He is my living member of my original nuclear family, I have no other blood family except for my kids.  He is a pain to take care of but I still love him dearly.

On another note, I found out on Saturday he has another girlfriend!  Her name is Lee and she is 93 years old and in a wheel chair.  The receptionist told me all about it.  When I remarked that I was worried that another girlfriend was going to die on him, she told me not to worry, that the only reason she was in the nursing home is that she was suffering from certain kinds of memory loss.  For instance, she can't remember my brother's name, but she does remember to sit next to him for meals.  Apparently they hold hands.  She has asked him to marry her, but he has demurred and told her that the memory of his former nursing home girlfriend is to fresh to him right now.  He told me she is "just a friend".  I hope Lee is not as nutty as Veronica, who had some violent tendencies. 

I mean to introduce myself to Veronica the next time I go to visit him.  I think I have already spoken to her, I just didn't know she was a girlfriend.

My brother seems so much happier in the nursing home than he was before he landed there.  To think that I spent so much time and energy to keep him out of a home.  But if he is happy, as happy as someone can be with his disabilities and autism, then I am happy.

By the way, his birthday card welcomed me into the "golden age" club.  His sense of humor always amuses me.

I had company tonight

My daughter offered to drive out to the nursing home with me tonight.  That was a real treat.  I had someone to talk to, she drove us home, and she kept up a slight bit of conversation with my brother, which is always a bit difficult.  He is looking to a group outing to Steak and Shake tomorrow, he is going to get a strawberry shake.

better

I went to visit my brother yesterday.  He's better, his hoarseness has almost disappeared and he said he was feeling better too.  Yay!  Other than that the visit was uneventful, just the usual breakfast a restaurant called Elly's.  Only he did surprise me by ordering and drinking a humongous glass of orange juice, he told me he needed to take care of himself!

still hoarse

I went to visit my brother a little earlier in the week this week, in part because I was worried about his hoarseness.  He's still hoarse and has a bit of a runny nose.  I stopped by and talked to the head nurse.  She said they started taking his blood again on a weekly basis because his numbers "were low".  She is Philippino and it's very hard to understand her English so I couldn't follow everything she was saying, something about his platelet count.  But she also said his numbers had improved and that it looked like it was just a cold.  At least she knew something about it.  My husband thinks I should call his doctor and find out why he is getting the blood tests.  I think I'm not getting billed for it because now that his insurance has stopped, medicaid is getting billed for everything.  What a crazy, crazy system.

hoarse

I went to visit my brother yesterday (Saturday) with my daughter.  We took him out to breakfast.  He was pretty hoarse, so I stopped by to ask the nurse to keep an eye on him, that he had congestive heart failure.  She said that so far he hadn't put on any weight.  Well, at least she was aware of the issue. 

But now, I'm a little nervous.  I don't want to be a nag, but I have no confidence that the staff will stay on top of his condition.  It could be he just has a cold, there's been a lot of that going around at the nursing home.  But the flu could also turn into something worse.

Tomorrow is my husband's birthday.  Last year, we found out I had cancer on his birthday.  I don't want to call the nursing home tomorrow and possibly ruin another birthday.  I think I will probably wait and call on Tuesday.  I think I have enough grace time, given the situation.

I  have been reflecting on everything that has happened in the past year, and given what could have gone wrong, things are pretty good!  This time last year, I thought my brother had less than a year to live.  I no longer think that. I've had some time this year to take care of myself and other family needs, and I'm feeling pretty good too, so let's keep our fingers crossed.

disappointment

Yesterday, I called a nursing home that was closer to my huse, Lieberman's to see where my brother was on the mailing list.  I may have mentioned that I have previously called, trying to place hm there.  It used to be there said they didn't take anyone until they were 65.  But I asked my case manager to work on it and he got put on the list.  But when I called yesterday, they really put me off.  They said that it would be very unlikely they would take him because they give priority to residents who are ini assisted living in their system (they are a non-profit).  It took me quite a while to find out how many people were even on the public aid list.  This actually doesn't surprise me.  It's really hard to place him because he's on public aid and nursing homes figure he will live a long time because of his age.  This is discrimination because he is developmentally disabled and I'm not sure that there is anything I can do about it, from what I understand, it's not even against the law.  As long as the nursing homes have medicad beds, they can pick and choose who they want to fill them.

I found this very depressing.  I went and had breakfast with him, he was looking pretty good, and I was reflecting that he could live a long time, and I'm not sure how long I'm going to last going to drive for an hour and a half, twice a week, to visit him.  Plus, it's very disappointing to not have an easy way to bring him to my house.

back from Spain

I came back from Spain yesterday.  Because of the time change, I woke up very early today and went out to see my brother about a half hour earlier than I usually do.  By being away for a little more than a week, we had a little more than usual to talk about.  I gave him a brief 60 second version of my trip, he told me how he had won 8 times in Bingo in one day.  Today is Easter, and yesterday, they had a seder for Passover at the nursing home.  He said it lasted about an hour, and that the chaplain had asked him to read the four questions.  I told him I wouldn't even know what the four questions were, let alone the answers. 

When I put his walker in my car, I noticed some liquid oozing out of the little box that is there to hold personal items.  With trepidation I opened it and discovered all sorts of packets of mustard, ketchup, butter, and cream.  I cannot figure this out because he has no access to food other than at his meals, so what is he using the condiments for?  I could not get a straight story out of him, he was pretty sheepish.  I mentioned to him that he could get very sick from eating rancid butter and cream and that this stuff needed to be refrigerated or it went bad.  So I scooped out the butter and cream, and then washed my hands, which were pretty grimy.   I also found a bag of gummi worm type candies, and when I asked where they came from, he told me the chaplain had given them to him because he wanted to "get rid of it".

When we came back to the nursing home, I spoke to his nurse Stephanie about the need for someone to check the contents of his walker on a daily basis.  I also expressed my concern that given his choking problems, gummi candy was probably not a good idea.  She agreed and said she would write into his chart the need to look into the walker.  I give the chances of this actually happening at about 5%.

As I was leaving, I ran into one of the CNTs that we really liked who had been switched to the first floor (my brother is on the second.)  She saw me and ran up and gave me a big hug.  I think I got the hug because we had given her a gift certificate for Christmas, and back then, she had started crying when she received it.  She is a really nice lady, and I felt really good about the hug.

Feeling guilty

I went to visit my brother tonight.  I had a bunch of things to talk about.  This week my daughter is finding out about college admissions and she is doing pretty well, she is even getting merit scholarships.  This is a hard thing to talk about with friends because you don't want to make them jealous.  I am missing my parents a lot this week because they are the folks who I would normally call, and of course, they have passed away and are not longer around.  My brother is my only other family so I told him.  He was pleased for her, but I know he feels badly that he never went to college or anywhere, for that matter. 

Then I told him the one of my parents best friends (the wife) died this morning, and that I had gone to visit both of them last night.  I hadn't seen either of them since my father died, but once the husband called to let me know his wife was in hospice, I felt that he had a pretty strong need to see me, so I went.  This is a pretty weird family where the daughter is not on speaking terms with her parents, and there is a whole long story of my parents getting cut off from a lot of their friends because of this issue. 

So their son is in town with his wife for the "transition".  He looked exactly like his father, bald, old, and pretty fleshy.  His wife seemed really bitter, her mother had just died a few months ago.  The strangest thing was that it turned out the son was in the same kindergarten class as my husband, he even brought out an old class photo.  I told my brother that story.

Then I got enough nerve up to tell my brother I was going to Spain with my husband, daughter, and son.  He took it ok, but he immediately said he was happy for me but that he wished he could go somewhere.

I would like to take my brother on a trip, but it would be a huge amount of work.  The biggest problem is that he is incontinent and won't tell you when his diaper needs to be changed and then that can get really messy.  Changing diapers with him is so intimate, I have issues with it.  I suppose I could get used to it.  Then there is the medication issue, you gotta remember what he takes when, it's pretty complicated and if you screw up, you could kill him.  Meanwhile, he walks at a snails pace, I mean, really, really, slow, and he tires pretty badly after a block or two, so you would have to do a trip that was sedentary, I'm not even sure what that would be.  I am going to have to think about it.  I am feeling pretty guilty about it though.

He was drinking coffee and choked several times.  I know this is going to have to get worse before we know what the problem is.   It took three years for the doctors to realize he had gallbladder problems when he was throwing up off and on. 

It's hard to keep the conversation going

I had breakfast by myself with my brother today.  It was mellow but very hard to keep a conversation going.  I see him enough so that there is not much to report on what's going on with my life on any particular day.  I could have told him we are going to Spain next week for a week, but I want to wait for the last minute so he doesn't get stressed out enough to get sick.  (This has happened before.)  But his world is so restricted, he doesn't have much to talk about, and let's face it, it was always hard to keep a conversation going with him, even when he was "well".

I just finished sending our intenirary to our case manager, friends, and will be sending it to the nursing home too.  I made special arrangements to rent a "global" phone in case there is an emergency and I would need to come home.  I kind of resent that I have to do this, it would be nice if I could just leave town and totally forget any responsibility, but what the heck, that's life, things could be a lot, lot, worse.

good news

My husband and I drove out to see my brother today, it was gorgeous outside, in the mid-eighties.  We took him for a walk around the grounds.  I was telling my husband on the way home how sick I am of driving all the way out there twice a week, and how I appreciated him driving out with me.  When I came home, I found out from our case manager that he had gotten on the waiting list for a local nursing home, I just don't know how  long it will take to place him.  Keep your fingers crossed!

Meanwhile, my brother was in good spirits, despite the fact that no one at the home made any effort to arrange for the ambulatory patients to sit outside today.  Unbelievable.

Is he beginning to wheeze again

Last Saturday was a beautiful day, and my husband was nice and drove with me to see my brother.  It is always good to have a helping hand, especially with the walker, because I have been having some trouble with tendinitis in my arm and it's kind of hard to lift the walker and put it in the car.

My brother didn't seem to be having a great physical day.  He had some kind of congestion going on.  I am planning on going to Spain with my family in a few weeks, the last hurrah before my daughter goes to college, and my grown up son is coming too.  The plan is not to tell my brother until right before so he doesn't get upset and make himself sick.  (He has been known to wreck many of my vacations!)  So of course I'm a little worried that something is going to happen.  It's probably a little selfish of me to worry more about my vacation then about him.

It's tax time and I have been working on his taxes.  It's complicated because he gets SSID, and has two trusts.  Then, I start finding out he has the small IRA CDs that no on knew about!  And I thought I had finally gotten all the finances under control.

At least his medicare card showed up in the mail.  That starts in July.  Let's hope he doesn't get sick until then, I don't think you get the best care when you are just on public aid.

But, despite this, things are pretty much ok.

skipped a visit

My husband has visited with my brother the last two weeks.  I don't go, instead I go work out.
My husband has been working at home and has time to take my brother out of the nursing home during the day, which of course, my brother likes.  I love it!  But I wonder how long this is going to last....a lot of this depends on my husband's work schedule, and of course, whether he feels like going or not.  I don't feel like I get that luxury, if I don't go, or arrange for someone else to go, then of course, no one goes. 

My husband is pretty good about visiting the infirm.  He visited his elderly aunt, where he was the only relative in town, in her nursing home, for almost 10 years, at least once a week, sometimes many times.  But she lived a lot closer to our home, only about 10 minutes away.  I need to work on getting my brother closer to our house, life would improve for both of us.

the life force

I woke up today from a dream that really made me think.  I dreamt that I came across some kind of organism that had a clear jelly coating that was so beautiful, it caused every one to feel happy and to feel joy by just looking at it.  I couldn't figure out why it was so beautiful, it just kind of had earth colors, but it had some kind of inner light to it that just glowed with energy, it's really hard to describe.

When I woke up, I started thinking about it and then I realized what made it so beautiful was because it glowed with the life force.  And then I started thinking what life would be like if such an organism really existed, that it must have come from some place not on earth.  If it multiplied, there would be some kind of utopian development that would take place, people would feel so joyous that there were be no war, no one would want to hurt each other, and everyone would share everything.  I considered writing a short story to describe what would happen.

Then I started thinking about the nursing home.  I thought about how much effort is put into keeping even the minimally alive living, and how, whether we recognize it or not, life is a driving force for human beings.  It is really the exception when people do not want to live, although it does happen.  I thought about my father and how he decided he didn't want to live under the conditions he would have to live under (constant medical care, not being ambulatory, stuck in bed, and waiting for death to come).  I also thought about my mother who fought death until her very last breath, and how there were tons of people in the hospital who were there to help her fight it and stay alive.  I thought about all the people I know who are living in my brother's nursing home, and although they might not be happy, they are all alive and would like to stay that way (at least most of them, the ones that are still cognizant.)

Which gets me back to my dream and my musings about utopia.  There is something about life that touches the soul, that has some special force, that is hard to ignore, and there must be something about the interaction of this force with our brains.  Why else was I so overcome with pleasure and rapture when I encountered life in my dream?  Why is it that people can so easily get out touch with this basic drive of the human condition?

When I told a friend today about my dream, she asked me if I had been taking hallucinogens lately!  I laughed.

the real truth?

Today is Saturday and I went to have breakfast with my brother.  It was his friend Carol's last day at the nursing home, she is moving to another one.  I asked her if she was excited and she said no, she was nervous because she didn't know how it was going to work out.  I don't blame her.  I told her I would call her in a few weeks to see how she liked it, it's a nursing home that is much, much closer to my house.

When I was walking out I asked the receptionist what the story was with Carol. She had a much different version.  She said that she had been belligerent with the nurses and then called the cops, and that the nurses were unhappy with her.   My tendency is to think that Carol has the most cognitive ability of the patients at the nursing home and was trying to protect her dignity.

Meanwhile, I got this note from Illinois Medicaid telling me that my brother has to sign up for a HMO.  Fair enough, I know there is a lot of money wasted in the system.  As I investigating, it turns out the State/HMOs haven't done their homework, and no one knows of any doctors in the system that will come to my brothers nursing home.  I left a message for the social worker to call me, but of course no one has called me.  More to come on that in future blogs, I'm sure....

good mood and a story

I went to visit my brother on Saturday.  He was in a really, really good mood, very jovial, I'm not sure why exactly, but what the heck.  We went out to breakfast.  At breakfast we gossip about what is going on at the nursing home.  Usually there is nothing new going on.  But on Saturday he told me about Carol.  Carol is a fairly heavy person who was admitted to the nursing home around the same time my brother was.  At the time, I heard she was suffering from arthritis and in for physical therapy.  She was in a wheel chair but trying to walk again.  She had been at the horrible nursing home my brother had been in and she told me that nursing home had almost killed her.  Of all the people on my brother's floor, she is the most independent, talkative, and together mentally.  She was friends with my brother's girlfriend, and actually must be pretty good friends with the girlfriend's daughter because the daughter keeps on coming back to visit even though her mother died recently (and had been kicked out of the nursing home for violent behavior.)  Carol has fallen several times in the nursing home and never got out of the wheelchair.  She is on public aid.

Lately, my brother had told me that her colon cancer had come back and she had to undergo more chemotherapy.  I saw her in the morning and she looked like she had lost about 20 pounds. 

But on Saturday, he told me that she had been asked to move out of the nursing home.  It turns out she has called the police twice.  So I asked why.  He said that one of the patients was "known for having an anger problem" and had been harassing Carol.  Also there was another patient who had been haranguing her. 

I don't know what to think about this.  Obviously I don't have all the information.  But there is something I like that she took the steps of calling the police when the nursing home couldn't protect her peace of mind.

My brother seems to be ok with moving if it means being closer to me.  I just received a new application form to fill out that I'm going to sanitize a bit from what our case manager wrote.  Our case manager is ok with this.

PS, I see that I have gotten some extra hits on the blog a couple of days ago.  There must have been some kind of meeting/conference where it was publicized.  I love it!

things have been pretty quiet lately

I haven't been writing in the blog lately because things have been pretty quiet.  I asked our case manager to talk to the nursing home that is closer to us, and she got an application and made out as much of it she could then sent it over to me.  It looked pretty good except the part about his psychiatric evaluation.  She mentioned that my brother can be cantankerous and difficult, but that he had been much better since he started living at the nursing home.  This is all true, but I am concerned that if the new nursing home reads it, they will think there is really a problem.  So I have a call into the case manager to confer with her on the language.

I went to see my brother today.  I have been doing it on Saturdays lately, because frankly, after I am done, I feel like the rest of the weekend is mine and I don't have to think about him too much.  So far, so good.  He hasn't been putting on more weight, although he doesn't seem as energetic as he did about a month ago.  He's a little quiet.

It's beginning to get a little lighter out at night, which makes me feel better about going out during the weeknights to see him.  About half the trip out there is in daylight, and the trip coming back is not too bad in terms of glare (that's my sight issue) because there is not too much traffic.  I was a little freaked about driving in general because I had an accident in December and didn't even drive much in January because the car was in the shop, but I'm getting better about that too.

I'm working too hard at work, so I've been pretty tired this week.  I gotta stop doing that, it's not good for my health!  (or for having energy for my brother)

my brother is doing pretty well

My husband is still driving me out to see my brother because one of our cars is being fixed.  I was pretty tired tonight, but happy to see my brother looked pretty good.   The head nurse happened to stop by while we were visiting and I was able to find out that the cardiologist thought he was ok.  Earlier in the week I was called by the speech therapist about her evaluation of his gagging.  I told her I was not sure whether the issue was in his throat or his gastro-intestinal system, and I asked for a GI analysis.  However, today he claims he has not had an incident for two weeks.  But he is belching a lot.  I spoke to the head nurse about it and we decided to go through with the GI exam.

not dead yet

Last Saturday I went to visit my brother.  At breakfast he told me his roommate had died and they had put in a new roommate immediately who only spoke Chinese.  I said I was sorry and asked what had his roommate died of, was he in the room when he died, and what did the other patients have to say about it.  I couldn't get much information out of him. 

When we got back to the nursing home, I noticed that his clothes (I thought) were missing again.  Also, they had him in the same green shirt for about 4 or 5 of my visits with him.  So I was talking to his CNT, the one we like, and mentioned that it was too bad his roommate died.  It runs out he didn't die!  The CNT told me "he's in the hospital, just for diarrhea".  So I immediately went to where my brother was hanging out, near the nurses station, and told him.  He said "oh".

My brother also told me that the cardiologist had seen him on Friday.  This must have been a result of my request.  Now I need to go follow up and find out the results.  Of course, no one is going to call me and let me know.

gagging and sad news

I took my brother out for breakfast yesterday, because I have mentioned, my car is in the shop and my husband needs the other car on Sundays so he can play basketball.  As soon as I got to the nursing home, one of the more together patients, Carole, wheeled up to me and let me know that my brother's girlfriend, Veronica, had passed away.  She knew because for some reason, Veronica's daughter was still visiting the nursing home even though her mother wasn't there.  Carole didn't want to be the one to break the bad news, so she asked me to.

I told him at breakfast.  There was a slight look of shock in his eyes.  He said "my God" and that was about all.  I couldn't tell if he was upset because he missed her, or because he was dealing with his own mortality.  Maybe it was a bit of both.  But I know my brother and know that he just doesn't connect emotionally in the same way other people do.  The subject was changed and we talked about other things, I don't remember what.  I tried to circle back to see if there was anything he wanted to get off his chest but there wasn't.  I said something like she must have been pretty sick and he said, "yes, very sick and very crazy".  

During breakfast he gagged on his food.  He hasn't done this since he had his gallbladder taken out.  He was gagging quite a bit for several years, and it took that long to discover that he had an infected gallbladder and that the stones had gotten stuck in a liver duct.   But the gallbladder is gone, it shouldn't be happening anymore.  I asked him was it his throat (he was hoarse again) or his stomach or his esophagus and he couldn't tell me.  I asked him how often it happened and he said frequently, and when I asked how frequently, he said once a week.  I know from experience this kind of information is just not reliable.  I started looking at him a lot closer.  I noticed he looked a bit swollen in the face and almost like he was getting jaundice, kind of a tanned look on his face.  I also saw that he had a long gash on his arm.  I asked him what that was from and he said he woke up with it.  This has been another ongoing problem, he picks at his skin.  Last year, I took him to a dermatologist and the doctor couldn't figure out what it was, she thought maybe it was neurological, that he felt something that wasn't there.  The nursing home says it's not that unusual among their patients.  It's one of the things that used to drive me crazy when he lived in assisted living because there was no one there to notice and patch him up, the cuts tend to get infected because he doesn't keep them clean.

When we got back to the nursing home, I talked to the nurse about it.  She looked up his weight and it looks like he has gained about 3-4 lbs, not enough to start talking about removing water from him but getting there.  She said the jaundice may be because he is getting swollen again.  She said she would write into this chart that the nurses should keep a look on him for water retention and gagging.  I mentioned that if he had to go to the ER, I wanted him to go to the hospital nearest to where I lived, not the hospital closest to the nursing home.  She said she would write that in too.

Later on that night, about 9:30, I got a call from the nursing home.  Of course I figured that something was going on with his heart, but they were calling to let me know about the gash, that it was bad enough that it sets off a reporting requirement where they have to let the relatives know.  This has been an issue before, they have called in the middle of the night for these minor issues.  I told the new nurse about the gagging problem and I didn't like her response.  She said that the CNTs keep a good eye on it in the dining room.  I told her that wasn't the issue, the issue was did a doctor need to look at him. 

The whole situation does not give me a lot of confidence that the nursing home is going to catch an adverse condition in a timely way.  I am a little aggravated that I am the one who has to keep an eye on all this.  Plus, his insurance is going to run out this month, and then he will be soley on public aid until July when medicare kicks in.

putting on liquids

My husband was nice and drove me to visit my brother last night.  One of the reasons is because I had an auto accident and one of our cars is now in the shop for the next 30 days.  This is going to make it a bit difficult to visit my brother, and it is going to have to cause a change in the routine.  For instance, I am going to take him out for breakfast Saturday morning instead of Sunday so that my husband can take the car Sunday morning and go play basketball.  I am a little freaked out about having an accident (I never had one before), and the car being so damaged, but at least no one got hurt and the car is insured and it's only money, nothing more important.

I was a bit concerned when I saw my brother. He was a little hoarse and when I asked him what he weighed he said he had gained about 5 lbs.  I am figuring by next week I am going to have to intervene and ask to have a doctor see him again.  I wonder how many times you can safely take lasex before your kidneys fail.  Not a pleasant thought.  That's basically how my father died.  He also had congestive heart failure and eventually his kidneys did him in (along with a non-responsive episode and a stroke.  But that's another story.)

I'm having some friends over Saturday night for a belated Hanukkah party.  That's because their father died right during Hanukkah and we postponed the whole thing.  I am feeling a little guilty about not inviting my brother but not guilty enough to do something about it.

New Years Day, 2012

I took my brother out to Dunkin Donuts on New Years Eve, not New Years.  These days when I walk into the activity room and haven't announced that I am coming in advance, I usually find my brother nodding out with the other 25+ patients (the rest of the them are in wheelchairs).  I am not too happy about this, but he perks up immediately when I walk into the room.  This leads me to believe that the little trips that I make with him twice a week are important, and even thought I get tired of having to visit him, I do it anyway.

We had a nice little visit at the store.  They now have a 99 cent "expresso" that both he and I have been ordering.  It kind of wakes me up for the drive home.  It's good. I also left him a container of Lucky Soup, which is a bean soup tradition that my mother started, you are supposed to have it at the New Year for good luck.  The nurse at the desk was very nice about it and said that my brother should remind the nursing staff to heat it up for him for dinner.

I called the nursing home today on New Years Day to wish him a Happy New Year.  The first time I called they put me on hold for 15 minutes, so I hung up and tried again.  The second time, after about 10 minutes they got back on and told me that he was probably on break.  So I asked, where we he break to, he's a patient.  They said oh.  Then they went to go get him and the line was dropped.  I gave up for a while.

I was able to call and speak to him later in the day.  As usual, he was pretty curt.  I don't think he likes the stimulus of phone calls very much, he is always rushing me off the phone.  I asked if he had eaten the soup, and he said no.  He said he would have it tonight.  I doubt he will get it together to ask for it.

But what a difference a year makes.  This time last year, I was sure he wouldn't make it through the year and a lot of his doctors felt the same.  As I mentioned before, at least for the present, he is looking relatively good.