pre new years

I just came back from a trip to the Twin Cities with my husband and my daughter.  I felt slightly guilty leaving my brother back, but not guilty enough not to do it.  It was really nice being able to leave town without having to worry about him.  I wasn't worried because he was doing so well when I left, he was even walking a bit without his walker.

Tomorrow is New Years Eve.  I plan to visit him in the morning and take him out for coffee, but I don't plan on seeing him on New Years Day.  I feel a little guilty about this too.  If he lived closer, I would bring him to my house.  I haven't gotten myself to call the nursing home closer to my home to get him on a waiting list because I'm afraid they are going to reject him and I am going to get really aggravated.  They have this thing about not taking anyone before 65 (he's 63), and of course, they are not going to want a public aid patient.  I am still dwelling on how to broach this to them.

movies

Last Saturday, my husband and I took my brother out to the movies.  First we went and had Middle Eastern fast food, and then we say "Tower Heist".  My brother was in a good mood, despite the fact it was dark out, which bothers him because he doesn't see too well.  Going to dinner and the movies is a good activity to do with him because it's not that boring.  I think I have mentioned that it is usually very hard to keep a conversation going with him.  Having my husband there really helps.

I'm on vacation this week, so I went out during the day on Tuesday to deliver gifts for some favorite staff and two cookie (store bought) trays for the staff.  Everyone seemed quite appreciative, the CN (the person who keeps my brother clean, etc.) actually started crying, it was touching.  I was glad I had gone to the effort, even though it isn't exactly how I want to be spending precious time off of work. But it did make feel how much easier it would be to caretake for my brother if I was not working and retired.  My brother is very undemanding, the smallest bit of effort on my part seems to make him pretty happy.

I also took him out to Dunkin Donuts for coffee (he had a latte!) and when we came back they were just starting Hanukkah services.  They were calling for him like he was part of the family, and he seemed pretty happy to be back.

So it was a good visit.  I am in a good mood myself because these are the first holidays in a very long time where someone in my family is not near imminent death.  It feels very good not to have that cloud over me right now (although I am very aware it could come back at any moment.)  so far, it's very happy holidays!

no news is good news

I had an uneventful visit with my brother today.  It is Sunday, so I took him out for breakfast.  He has altered his usual order by now having a toasted bagel instead of rye toast.  I cleaned out his hearing aid, he needed a new battery.  That's about it.  I told him if a good movie was released, I would take him out this month to see it.  That brightened him up a bit.

sad news

I went to visit my brother tonight and he told me, almost in passing, that his girlfriend, the one who was sent way, had a serious heart attack.  It is unclear is she is still in the hospital or not.  It was hard to determine how much this is bothering him, he is never one to let on that anything is bothering him at all.

Other than that, it was a usual get together.  These days, on a weeknight, we take the elevator to the first floor, he gets a coffee and I get a tea and we chat for 15-20 minutes.  Then I can't think of anything else more to say and then I leave.  It takes me 45 minutes each way to get to the nursing home and back.

post thanksgiving breakfast

Today I took my son with me to have Sunday breakfast with my brother.  My daughter was totally bogged down with college applications so she didn't come.  My brother looked kind of down.  The period between Thanksgiving and Christmas always seems to get to him.  I asked him if anything was wrong, and he said no.  But  you could see, he was kind of hunched down and not looking up.  My son is really good at engaging anyone in a conversation, and even he was having a hard time.  However, by the end of the breakfast my brother was opening up a bit.

In the last couple of years, this would have gotten me a bit bent out of shape, I would have intervened more, do more to cheer him up.  But I'm pretty tired of that, I have a lot to do at home helping (nagging) my daughter to finish her applications, and I want to enjoy my weekend off as much as possible.  So I left the nursing home not having that bother me that much.

thanksgiving

I brought my brother to my new house for the first time on Thanksgiving.  He had a pretty hard time on the stairs.  We took him to the side door so that he could go up the stairs inside the house instead of outside the house.  We figured there was a better railing and better lights.  But I think because he doesn't do stairs anymore that it's really difficult for him.  In general, we figure we can lift him up by under the arms and just lift him up the stairs, but he doesn't like that.
I felt a little bad because I was cooking and hostessing and didn't have a lot of time to talk to him.  Our guests (my son's girlfriend's family) didn't talk to him much at all, which is not surprising because if you don't know him pretty well, it's hard to engage him in any conversation at all.
Tomorrow I am taking both my kids and having breakfast with him, I assume that it is going to go a lot better.  He likes his routines.

ekg

I was away for about 10 days.  First I went to San Francisco and visited with my son and his girlfriend.  Then I came home for a day and went to Minnesota for work, and was able to stay with friends.  It was great to get away and not have any responsibilities in regards to my brother, a real vacation, even though the Minnesota work part was kind of stressful, I would take that any day in exchange for not having to be responsible for someone else's survival.

When I got back in town, I called my brother from the taxi that was taking me home.  His speech sound kind of slurred, and I couldn't tell if it was because he was tired (sometimes that happens) or if he had another TIA.  I wrestled with myself the rest of the week about whether or not I needed to go out and check up on him.  I decided not to because it didn't seem that by the time I found out, there was little that could be done. I was into avoidance big time, something I am not proud of.

I went and visited him today, wondering what I would find.  He looked good, his speech was clear (well, clear for him, at least).  He has lost a lot of weight and I think he is not dragging around as much.  But I was really surprised to find out that he had an EKG scheduled for today, a Sunday.  When I asked why, they said it was run of the mill, and they were doing it on a Sunday because of the upcoming holiday.  I'm not sure if I can really believe the nurse or not.  I figure I will call the nursing home and the doctor later tomorrow and get the results of the EKG.

I have invited my brother to come to my house for Thanksgiving, it's the first time he will have been there since we have moved.  There are a bunch of steps he is going to have to maneuver, which concerns me a bit, but I figure we can just kind of boost him up and down if we have to.   I am also thinking about how I am going to protect my furniture in case he wets his pants.  This is a little disconcerting, but I don't think it's a reason to not have him over.

a visit before vacation

I went to see my brother tonight.  It was raining off and on, so traffic was kind of slow but not too bad.  I have a hard time driving when it's dark out, and now it's dark by 5 pm when I get off the train and pick my car up at the train station and take off for the nursing home.  I would really prefer to not be driving under these conditions, but I am careful and go more slowly than I do in daylight.  I must sound like an old lady.

The visit went well.  My brother had already had dinner (it was only 5:40 or so), which kind of surprised me.  He didn't look weaker than normal, which is good because they have increased his lasex.  It is kind of disturbing that they are not taking his blood pressure on a daily basis, he says it happens about once every 10 days.  They are also still waking him up at 5:30, so I asked for the social worker and told her.  She said she would do something about it, let's see if she does.

I am going on vacation to visit my son, coming back into town for about 24 hours, and then leaving for another two days for a work trip, returning fairly late at night, so I won't be seeing my brother for about a little more than a week and a half.  I am actually kind of looking forward to not having to drive out to the nursing home, but I am concerned about his heart.  He told me his cough has disappeared (at least he didn't cough when I was with him), but he still sounds pretty hoarse.

the care meeting and an unsettling phone call

The care meeting took place last Friday, November 4.  Apparently there is supposed to be one every 3 months and is a bit pro forma.  The social worker, the activities director, and the head of nursing attended.  We met in the second floor lounge, which used to have a nice table in it and table and chairs, as well as a loveseat and a tv.  My brother and I sat in the loveseat because the rest of the furniture is missing.  When the other 3 came in I asked what had happened to the furniture.  One person replied that they needed the chairs for the big activity room.  Someone else replied that the storage room was next door, they had removed the furniture to bring in storage, and never replaced it.  Somehow this all didn't surprise me, as most of the time, there seems to be no one in charge of the floor or the whole facility for that matter.

The three of them didn't have much to say, so I brought in my list.  I think I handled it pretty well and didn't get them angry. The first item on my list was the fact that it was me that discovered that my brother had put on 15 obs in three weeks and insisted that he get medical attention.  The head nurse told me that they are now weighing him weekly.  I told her that if they didn't step up to the plate on these kind of things, it made me feel that I could never go on vacation, that I needed to check up on him more than once a week to make sure that his heart was acting up.  They nodded.  I then told them I would like a diagnosis for his persistent cough.  They told me that they were waiting for his labs to get back, but were referring him to a speech therapist.  I was kind of surprised at that and asked why.  The nurse told me that the speech therapist would look to see if it was a swallowing problem.  I then mentioned that he seemed to be walking pretty well but was having more difficulty getting out of his chair, was there any way for him to get some exercise for that (they will check into it.) I brought up that his Lasex had been increased, which meant more frequent and heavier urination, and asked that his diaper be changed more frequently, since the last time I saw him he was soaking wet.  I mentioned that his insurance was going to run out in January, and they told me when the time comes to tell the billings person.  I also told them I was still getting mail at my old house and the social worker said she would make out some kind of form (again) for new addresses.  I mentioned that his physical care seemed to be slipping, he is not getting shaved as often as he is supposed to, and his hearing aid is not getting cleaned.  (I reminded them that by not cleaning it, they caused a $400 repair that Manor paid half of). They all agreed to fix these problems.

Then my brother piped up and asked if it was his turn.  He said that he really liked the staff at the home, and he was happy to live there.  And then he said, get this, I am paraphrasing:"I don't ask for much, but my main goal I want to discuss with you is managing my medical condition, I want to live as long as possible, that's all I ask".  I was astounded, it was very moving the way he said it. And then he proceeded to tell them that he didn't want pork or milk.  I asked him why he didn't want pork and he said it's because he's Jewish.  I remarked this had never stopped him before!  I also asked him what the problem was with the milk and he said he didn't like the way it tasted.  Fair enough.  We were able to persuade him to eat cottage cheese instead.  Lastly, he asked them why he was being woken up at 5:30 every morning to get dressed.  They asked him when he wanted to wake up and he said some time between 7 and 7:30.  They said that was during a shift change and he might not get woken up exactly at 7, he might have to wait a bit and he was ok with that.

Right before I left, they thanked me for coming and said that it was good, most of the relatives don't come and let them know what's going on!  It really does make me shudder about how most of the rest of the patients can be treated if they don't have advocates to speak up for them.  I made a little speech about how I knew it was hard to run a big institution like that with not enough staff or funds, and hoped that they would tolerate me if I got frustrated some times.  It was all very friendly.

Saturday, as I was driving my daughter to take her SAT test, I got this phone call from the nursing home at 7:45 am.  Nobody from there calls that early unless there is a problem.  But it turns out the good nurse, who has been relegated to the weekends, and on a different floor, but who has taken an interest in him, noticed that his test results came back (she said at 1:30 am).  The results showed that he was suffering from mild congestive heart failure (no news to me) and still had fluid in his right lung, so his lasex was increasing for 7 days, she wanted me to know.  After I hung up, I called back to let her know that  his blood pressure really needs to be checked because he is prone to rapid blood pressure decline under these conditions.  She had already left, and then I realized that she was calling me so early because it was the end of her shift.  She is really a remarkable person.  So I called the nurses desk and repeated the mantra about his blood pressure.

Today, I visited for our regular Sunday breakfast.  I told my brother how proud I was of how he had handled the meeting and I think he liked that.  It sounds like the dietary changes have been made, but he is still being woken up at 5:30, and he didn't get his shower or shave Friday night, so I need to call tomorrow about that.  His hearing aid was pretty cleaned when I check it, but I had cleaned it on Friday, so who knows whether they are doing that or not.  I asked him if they had recently taken his blood pressure and he said no.  I reminded him that if he felt faint at all, he immediately had to tell someone because the condition could be life threatening.  He gave me his usual "I will" but I know it is unlikely that he would tell someone.  At this point, I am trying to let go a bit, I can't stress myself out to the point that I get sick like I used to.

A very interesting week.

the 63rd birthday

Yesterday (Tuesday) was my brother's 63rd birthday.  My husband, daughter, and I drove out to the nursing home to take my brother out to a restaurant near the nursing home called "Gullivers".  This was by design, because it is owned by the same people who own the Gullivers that was located near my brother's old home, and he used to frequent it a lot, often on his own.  The staff there knew him pretty well and treated him nicely.  The restaurant we went to last night wasn't as nice, the menu wasn't as big, but he seemed to like it.  He also seemed to like the shirt that I bought him as a present, although I gave it to him with trepidation because the nursing heme is always losing his clothes in the laundry.

I was surprised about how chipper he was.  When I had breakfast with him on Sunday, I walked in on a conversation the nurses were having about a patient who had attacked another patient, and the person turns out to be his girlfriend.  She had been sequestered (isolated) behind the nurses desk when I got there.  My brother told me last night that she had been shipped out to another facility by Sunday afternoon, presumably never to be seen again.  He didn't seem upset at all and was very philosophical about it , reminding me that she was severely mentally ill and reminding me that she had a "psychotic episode".  My brother has Aspergers Syndrome, and it has always been a bit unsettling how he deals with personal loss, it just doesn't seem to bother him that much.  I don't know if that is good or not.

He  has managed to lose some weight from the losing fluids by a change in his medication, but he still has a nasty cough that I plan to discuss at his care meeting on Friday.  At least I don't have to inquire about how to keep him safe from his girlfriend's violent attacks on people.  This whole thing is just so weird., I keep on having to remind myself that he almost died three times last year and he is doing remarkably well, considering.

accountablity

The new social worker called me today to set up a "care" meeting for my brother.  I took the opportunity to voice my concern that it shouldn't have been me to note that my brother had put on 15 pounds in 3 weeks.  Also, I told her that he had experienced plummeting blood pressure before and that they needed to keep an eye on it.  I let her know that I thought there was a problem  with accountability, that everyone replies that some kind of incident doesn't happen on their shift, therefore they are not accountable.  I mentioned that all his clothes are missing for a second time, and that I had to hound them to shave him, but that seemed to be fixed for the time being.  And I mentioned the need to remember to clean his hearing.

I told her these were items I wanted to put on the agenda to discuss.  She is knew on the job.  I think she was taken aback, and was a little distant.  I think at these meetings you are supposed to be compliant and that they hold them just to satisfy some kind of regulation.

so far so good

I went to visit my brother tonight with some trepidation.  I wasn't sure what I was going to find, although I think I mentioned in my last blog that his blood pressure seemed to be coming down, which was good.  Well, he was ok today.  He wasn't great.  He looked a little raggedy.  He was able to walk very briskly with his walker, but seemed to be having a hard time getting up from a sitting position.  His blood pressure was pretty good, 128/70 or so.  I guess I am going to wait and see what happens to his blood pressure  as he starts losing more fluid.

He mentioned that his girlfriend, Veronica, had to spend a few nights in the hospital for "arthritis".  I wonder what is going on there, I hope he has some time with her, it seems to be so happy about having a girlfriend.

still worried

I am spending many moments a day wondering how my brother is doing. If I call him, he is just going to say "fine".  Pinning down the nurses is about the same.

just trying to stay on top of my brothers care

I called the director of nursing today to make sure she was on top of my brother's medical condition.  Of course, she didn't answer the phone.  I got a wierd voice mail of what I think is the company she works for.  I called back the nursing home to make sure they had transferred me to the right number and they assured me they did.  I left her a message, telling her that they had doubled the amount of Lasex (sp?) and that I was concerned that my brother's blood pressure could drop precipitously, which it has done before.  I asked her to call me back, and she has yet to do so.  Neither has the patient advocate.

Then I called his nurse on his floor.  His blood pressure isn't too bad, in the 140s, something like that.  But when he was living on his own, it rarely got above 120/80.  My brother had told me earlier in the week his blood pressure (before the medication was changed) was in the 170s. That's so high, I didn't know whether I should believe him or not because he does get this kind of thing messed up.  But maybe he was right.  It makes me so angry that I'm the one that has to alert the staff that he was putting on fluid. 

I hate to take up the nurses' time, I know they work so hard, but if I don't look out for him, no one will.

a little bit of action today

My brother finally saw a doctor today.  My brother took some blood tests and the doctor ordered a chest xray.  When I was on the phone with the nurse trying to find out what happened, I found out that the doctor order weekly weighings.  This b others me, I am pretty sure he ordered daily weigh-ins earlier in my brother's stay, I am pretty sure they have been very haphazard in weighing him.  I also asked the nurse to make sure that they shaved him.  She started asking, what, were they supposed to shave off his moustache.  I told her that his previous CNA had been pretty good about keeping him relatively well shaved and since she was assigned to do something else, the only time he got a shave was when I came to visit and requested it.  She told me she would write into his orders for a daily shave.  I will believe it when I see it.

 I went out tonight to visit my brother.  He was pretty chipper.  He was sitting at a table eating dinner with his girlfriend, who was more alert than usual.  They were pretty cute, they looked quite comfortable with each other.  I talked her with her a bit for the first time.  She didn't know I was my brother's sister.  She told me she had just come back from the hospital because her legs hurt.  After discussing this with my brother later, it wasn't clear to me when she had gone to the hospital, whether this was an old memory or not.  When I got there my brother immediately wanted to get up from the dinner table and go to one of the sitting rooms and he didn't want Veronica, his girlfriend, to join us.

Later, I asked him why.  He said it was because "she is here all day, I am here all day, I don't get to have quality time with you, it's precious to me."  Sometimes, he sounds just like a regular person and I treasure those moments.

He sounded pretty good.  But later in our visit he started a really nasty cough.  When I got home, I had a message from the doctor on my answering machine from the morning, suggesting that I call him.  Since he hasn't done that in the past, I am a little worried.

concern

I'm concerned today.  The doctor never showed up to see my brother, even though he told the nurse on Sunday he would.  I anticipated something like this because I can never get a straight story about when he is going to show up.  So this morning, I spoke to my brother's nurse.  She knew nothing about my brother's weight, she had only two weights for the last two months.  I told her that it was in the doctors orders that he was supposed to be weighed daily, and I got a song and dance about how she wasn't there yesterday.  Nobody there every wants to be held accountable for anything.  The nurse said she would tell her supervisor what was going on, and that she couldn't order the doctor to come, it was up to him.

I called back in the later afternoon and of course no one had seen him.  The doctor is not supposedly coming tomorrow.  They did weigh him again and it sounded like he had gained around 13 pounds in the last few weeks.    I left a voice mail for the patient advocate.  Of course this was one of her days off.  It really ticks me off that I have to work at this to get him the proper medical care.  I am very concerned that if they don't deal with this condition soon, it is going to get into a crisis with him in the hospital, or worse.  I plan on driving out to the nursing home tomorrow evening to see how he is and get him some attention.  The problem is by the time I will get there, a lot of the people will have gone home.  I will also try and do this by phone during the day.

And this is one of the better nursing homes he has stayed at.  It is very discouraging.

Bloating

When I took out my brother this morning for breakfast, on the way out he asked our favorite nurse, Stephanie, to button his pants.  She made a remark that he was putting on weight, so I mentioned that I thought he looked a little bloated and voiced my concern that his congestive heart failure might be acting up.  She mentioned she had been working 2 16 hour shifts (she doesn't get along with the new nursing director), and that she wouldn't be around during the week to follow up.  Actually, she wasn't even his nurse today anyhow.  So we left for breakfast.  I noticed he had a gurgle in his throat and was breathing somewhat heavily, so when we got back, I started looking through his chart to see what his weight was.  I couldn't find it, it turns out it gets entered into the computer, not his "book", and they hadn't done it for several days.  One of the CNTs overheard us (another better one who has been taken off of helping my brother to "walk" patients (she doesn't like doing that), who weighed him.  It turns out e has gained about 15 lbs in about 2-3 weeks!  When Stephanie found out she called the doctor who comes into the nursing home.  He told her he would see my brother tomorrow morning, but that he had just seen him 2-3 days ago and that he had appeared fine.

This does not give me confidence in the medical care at the home, to say the least.  If I can tell there's something wrong just by looking at him. why can't the medical staff who works there?  I had a strong feeling that the doctor was just covering himself.  My expectations of the nursing staff is somewhat low; for the last 2 weeks, they have stopped shaving him unless I make a fuss.  Some of this is from the frequent turn over in staff, I expect it to just get worse because of the crisis in public aid in our State and the lack of timely payments to the nursing homes.

Meanwhile, Stephanie mentioned to me that she thinks the new girlfriend is not good for my brother.  She says she berates him because he doesn't pay enough attention to him.  She thinks the beratement makes my brother depressed.  Apparently the girlfriend is often quite depressed.  So the nurse separated them for the evening Saturday night, and she said my brother was singing and laughing with other patients.

When I asked my brother if the girlfriend was making him depressed, he started laughing.  He said the nurses have nothing else to talk about!  So I am thinking about all this and trying to take it in.  I will call the head  nurse in the morning and request again that my brother see a doctor.  The way things work at the home, it's my guess he won't see anyone for several days.

bloated?

I went to see my brother last night, because I knew I had physical therapy for myself late this afternoon and that I wouldn't get out to see him in time.  It turns out that the nursing home starts shutting down for the night after around 7 pm.   So, I went.  My brother was ok, not real energetic and with a phelgmy cough.  Plus I think he may be putting on water again.  They hadn't shaved him for several days, so I stopped by the head nurses office and asked to have him shaved.

Since I moved, I have to drive to the train station and park in a garage.  I left for the nursing home as soon as I got off the train, so I was able to cut down on my driving time by about 15 minutes.  It still took me half an hour, but that's better.  I got home about 7:00 pm, which still gave me some time for the rest of my family, which was good.

the girlfriend

Well, I would have never believed it, but my brother has a genuine girlfriend, the first time in his life.  Granted. she is pretty deranged.  She is 74, he is almost 63.  Actually, she is probably the person in the nursing home who is in the best shape, it's just that her mind is gone.  I hear that they kiss, hold hands, and he puts his arm around her when they watch tv.  And that he goes into her room to watch tv, too.  When I took him out for breakfast this Sunday, she scowled at me when I came back, I think she is jealous!

He is really happy and I am so happy for him.  I sit and think about how hard I worked for several years to keep him out of a nursing home so he could be independent, but he really is so much happier now. He told me he has always wanted a woman to be interested in him and now he has it!!

a quick ride today

For some reason today, it did not take so long to drive to  see my brother, only about 25 minutes.  It makes a big difference on my mood.  My brother was in a good mood and is still beaming about his girlfriend.  Turns out she has a daughter who visits every day.  My brother says the daughter is also taking care of her disabled from a stroke husband.  I have yet to meet anyone.  I don't think she is in the common room when I am there.  I haven't asked him to introduce me because I haven't had the energy to engage, so far, but I will.

I did not visit him during the week.  I had lots of doctors visits, including my 3 month check up with my oncologist.  Although I wasn't expecting any bad news, I was still pretty stressed about it.  I also had to work late twice this week.  And I have some kind of cold that is making my muscles hurt as well as my throat.  So I figured I needed the rest and I felt ok about it.

I would like to visit him just once a week, but it doesn't feel right.  But I am thinking about it. 

another cataract operation?

I have decided to postpone doing the cataract operation for my brother's other eye.  It's just too many people (especially me) having to take off too much work when I myself have a bunch of medical appointments I need to do too. 
The hang-up is that his private insurance only lasts until Jan. 1, and then he is only on Medicaid until July 1 when his medicare coverage starts.  (That is assuming that Congress doesn't just kill the whole program.)  So either we get it done in the next few months or we wait until July.

The ride out to the nursing home is beginning to get to me.  I am thinking of getting him on a waiting list for a medicaid bed for a fairly decent nursing home that is much closer to my house who won't take him anyway until he turns 65 (two years from now).  My husband questions why I want to move him when he seems so settled in where he is, but my reply is that it's 2 years from now, who knows if they will even take him, and when, and who knows what's going to happen, anyway.

The health care delivery system in this country is completely out of control.  Right now, my brother gets blood tests that are billed to his insurance at $300/week.  I only have to pay $3 of it.  But I am assuming I am going to have to make other arrangements in January.  I don't raise a stink about it right now because I don't have to pay.  The whole thing is really, really crazy.  There are people with their hands held out taking their cut all along the way.

Meanwhile, my brother continues to be in a good mood, which is wonderful.

a girlfriend

Lots has been going on in my life lately, and I'm glad I finally have time to write.  Besides moving my family to a different house, last week I was finally able to arrange for my brother to have cataract surgery.  They gave him the first appointment so that he wouldn't have to go too long without food and drink and possibly pass out.  That meant I had to leave my house at 5:00 am in the morning to pick him up at 5:50 am.  I live now about 10 minutes more in each direction from the nursing home.  The procedure itself went smoothly and only took about an hour and a half from start (prep) to finish.  After we left the surgery, I took my brother out for breakfast, so the whole thing lasted about 6 hours, with about 4 hours spent driving back and forth.  He says he can see a lot better now, which is so important.

Today, when I took him out for our weekly Sunday breakfast, the receptionist mentioned that I should ask my brother about his "girlfriend".  I did, but he wouldn't tell me a thing.  On my way out of the home, she stopped me again and told me the whole story.  It turns out there is a 74 year old woman who "doesn't have it all there" who has taken a fancy to him.  Actually they have taken a fancy to each other, hold hands, and even had a lovers quarrel because she was mad that she declared her love for him, but he hadn't for her.  Eventually he did.  This all has taken place during the last week.

The receptionist is telling me that the staff is teasing the two of them about a wedding.  I am a bit concerned that staff interest in the relationship (they think it's cute) may be patronizing, and also lead to some weird expectations.  However, I have known that he has always wanted a girlfriend his whole life, so if this makes him happy, I am ecstatic. 

I was in Minnesota over Labor Day and talking to a friend who is an advocate for the disabled.  She asked me how my brother was doing and naturally assumed that his placement in a nursing home was not desirable and I explained to her how actually he seems to be doing quite well and likes the "social" aspect of it.  But it never occurred to me that he would have adjusted like this!

And when I was away on Labor Day, I did not worry about him once.  This is very liberating.

vacation

I am leaving for a well deserved one week vacation today.  We are going to Yellowstone and it feels a little weird because we will often be out of cell phone reception.  However, my brother seems to be doing "well", except for a nasty infection in his arm that comes from him picking at his skin.  Now he is taking antibiotics for it, and it seems to have helped his coughing too.  Friday, he saw the cardiologist and my brother claims he got a clean bill of health.  ( I need to verify that today before I leave).  Next, we are in the middle of scheduling cataract surgery for him in September.  Then he needs to be taken to go get new glasses.  There's always something on the agenda.

At breakfast the last few times, he has told me that he treasures our moments together.  That was nice.

going outside is a good thing

I visited my brother last Wednesday night.  He was in a very good mood because the nursing home had taken around 6 residents out for lunch (at the patient's expense). 

He urine is being tested because he is urinating a lot.  The first test was contaminated, they are doing it again.  I called them to let them know that he used to be on medication for this, but they took him off it because it contributed to low blood pressure.

When I see him on Sunday, I will try to find out what the results of the cardiologist visit were.

Guessing what my brother likes

On Sunday, July 3, we took my brother out for dinner and the movies because it was a holiday weekend.  The nursing home was having a bar b que on July 4, so I figured rather than showing up for that, which would boring, that it would be better to show up a different day and then he would have two events to look forward to.

We took him out to Potbellys for sandwiches.  My father used to take him there a lot and he always used to order a meatball sandwich.  This time he wanted a turkey sandwich.  I asked him why not meatballs, and he told me he never really liked them, he did it to please my father.  Who would have known?

The movie was kind of stupid.  We saw "Bridesmaids".  I made some kind of comment that the movie wasn't very good but it was still kind of fun to go out.  He said something about "actually, it wasn't that much fun".  So then I told him that he needed to tell me what he would like to do to get out of the nursing home for excursions, and I would try to arrange it.  Of course, he never can articulate anything.  It's pretty frustrating, but I think I am in a place where I don't feel bad about it, it's just something I can't control and I have to accept.  He's just not a guy who can tell you what he likes.

Meanwhile, he looks like he is beginning to put on fluid again (although the nursing home staff doesn't think so (but I think they look at his ankles and because of his cerebral palsy, it's really difficult to tell.  I look at his face and his torso) , and he has developed a cough with fluid, but doesn't appear to have a cold.  I am guessing he is about to have a congestive heart failure episode.  I called his cardiologist today to see if someone could visit him at the home (the practice actually does this), but the nurse hasn't called back yet.  I am worried that if they try to start taking off the lasix, that his blood pressure will drop too low and we are going to have another crisis.  The timing is not good, because my husband and I are supposed to go on vacation to Yellowstone the last week of July.  It would not surprise me if my brother's health spoils yet another vacation, but it is what it is.  I can't blame him, because I have started not telling him when I am going out of time until the day before so he doesn't get too stressed out and make himself sick.

medical leave almost over

It's Thursday today and I visited my brother.  It's the last weekday where I won't be working, I am going back to work on Monday, having fully recovered from my surgery.  I must say it's much easier to visit him when I am not working, it is not nearly as much as a burden.  Plus, when I visit him during the week at night, we don't have time to go out, I just sit with him at the nursing home.  Today we went to Dunkin Donuts and I bought him a coffee.  He seemed to relish it, which made me feel good.

I've been having a few run ins with the social worker, who is a young, inexperienced male.  I have asked him several times to make arrangements to have my brother's hearing aid cleaned, he hasn't done anything about it yet.  Readers will remember that because the home didn't clean the hearing aid, I had to pay almost $400 to have it fixed.  He is also supposed to be arranging to have cataract surgery for my brother and he hasn't done anything on that either.  I am close to calling the home director and asking her to intercede.  He seems to be in charge of the laundry,which has lost most of my brother clothes and all his socks.  Today I brought the 12 new pairs of white socks with my brother's name written in huge block letters in indelible ink and I showed the socks to this guy and told him that my expectations were that they shouldn't be lost.

My brother seemed a little out of breath today. I arranged for him to get a haircut and asked the nurse to make sure his fingernails get cut.  His nails are really raggedy and he has been scratching himself. 

I am pretty relaxed from the long time I have had off of work.  I am a bit concerned the stress is going to start up again next week, and I am determined not to let it get me sick again.  I am also concerned that this visiting twice a week (that's two hours of driving alone, not even counting the visiting) is going to get overwhelming over time.

socks and nightime phone calls

Today, my daughter and I went to visit my brother and take him out to breakfast.  When I got to the nursing home, I found out that all his socks had been lost and he wasn't wearing any.  This is just so hard to believe how mismanaged the laundry service is.  The nurse told me to get white socks and label them with big black letters, that it might work better.  I went out later and bought him 12 new pairs and did the labeling.  We will see how long they last.

Tonight they called at 9:15 to let me know he had been picking at his scalp again, and that there was a skin tear.  Of course, my heart jumped when I got a call from the nursing home so late.  I asked them not to call unless it was a real emergency, but they said they the law compels them to do so.

Nonetheless, by brother was chipper.  He said that the big news that week was that someone the fire alarm had gone off erroneously.  (at least this is his version, it might have been a drill.)  I asked him what they did during a fire drill.  He said they took everyone out of the main activities room and put them in the hallways.  (he lives on the second floor.)   Most of the patients are in wheel chairs and not mobile.   It is scary to think of what they would do if there was a real fire and they had to get people downstairs right away.  I told my brother I think he is strong enough to slowly go down the stairs by himself, and that he could walk, if he had to, without his walker.  I hope he realizes this if an emergency ever really happened.

the hearing aid

Last Sunday, when I took my brother out for breakfast, I took home his hearing aid so I could get it fixed.  It was pretty obvious that the nursing home was changing the battery but not cleaning it.  When I tried to clean it, a huge glob of ear wax came out, but that still wasn't good enough for him to hear properly.

I did the 15 minute drive on Monday morning to the hearing aid store, only to find out it was closed on Mondays, despite the fact their web page said they were open.  Normally this would drive me up a wall because I would have had to take off from work to do it.  However, since I am still recovering from surgery, I am available to do short jaunts.

I went  back on Tuesday and found out that his insurance doesn't cover the hearing aid, because the issue is "weak sound", not that it was broken.  Whatever.  I also had to agree to pay $60 so it would be fixed within a week rather than two weeks.  My brother really turns into himself when he can't hear, and stops communicating, and it isn't healthy.  The whole thing is going to cost more than $300.

However, the hearing aid store offered to send someone out on a monthly basis to the nursing home to clean everyone's hearing aids.  They do this to drum up business, they did it at the place where my brother was doing assisted living.  The nursing home seems up for it, and the patient advocate is agitating for the nursing home to pay the bill because she recognized it was their fault for not cleaning the hearing aid in the first place.  Now, if I could only get them to find his clothes that are missing!

My brother still seems somehow, not quite right, and was a little out of breath when he walked to the car.  I hope this does not develop into yet another crisis.

breakfast

Today I drove myself for the first time in 3 weeks to go see my brother.  I took him out for breakfast.  He looked a little shaky today and wasn't walking very strongly until he had some food in him.  He looks like he has lost more weight so I asked him about it.  He said he had, and said they were giving him supplemental nutrients.  (I already knew this from several months ago.)  I asked him was it the food, was it no good and he said it wasn't that, but then he also said the food was unappetizing.

He ate about 2/3 of a waffle.  It's hard these days to remember him when he was so overweight (only about 7 years ago).  I have read on the Internet that loss of appetite is correlated with congestive heart failure.

But he was in good spirits.  It's still very hard to keep up a conversation with him, his world is pretty confined.

a walk in the woods

Yesterday, my husband and I went out to the nursing home and took my brother out.  It was a beautiful day in the high seventies, low eighties,with a nice warm wind so you didn't get hot.  First we went to Subways and had sandwiches.  This used to be a favorite exercise of my father and brother.  (I should also note it was my deceased mother's birthday, too.)  Then we went to a near-by forest preserves.  The preserves had a small dilapidated zoo with a few birds of prey and a skunk, which didn't show itself.  Also some bee hives.  The path was such that my brother could get around on a walker.  It was very pleasant.

I was the one who got tired first (I'm still recuperating), so we drove back to the nursing home and dropped him off.  My brother seemed very happy to get out.  So far though, he has not guilt tripped me at all, although I often feel badly on my own that he is stuck inside in one place so much.

A good day.

recovery

I had the operation and it was a success.  I am told that I have a 95% chance of the cancer not reoccurring, and I don't need radiation and chemo.  That is a relief.

Last Friday, my husband drove me to see my brother.  It was a long drive in my condition, I am still pretty weak.  But it was good to see him.  He made a comment thanking me for taking him out of the nursing home and giving him a break.  I am sorry that we can only be doing this about once a week until I get my driving privileges back in about two weeks.  For right now, I am dependent on my husband to drive me, and let's face it, his plate if pretty full taking care of me.

However, I was really struck by how much my brother needs me to stay alive and take care of him as much as I can.  If something happens to me permanently, his life is going to go even more down hill.  Such is life.

visit in between softball

I went to visit my brother yesterday in between my daughter's softball games.  It was a bit of a rush, but we were already pretty far west of the city, and I figured then I wouldn't have to visit him on Sunday.  While I was there, the nurse told me how well he is doing.

I spoke to her on the side and told her I was going to be out of commission for a while and that I needed surgery.  She suggested that I bring him home for a visit so that he wouldn't worry about me.  I was a bit irritated, I guess I feel that having cancer (she doesn't know that's what the surgery is for) is important enough where I can concentrate for once on me and not his needs.  However, I know she meant best.

He does seem to be doing well, he hasn't looked this good in quite a while.  Who knew he would adjust to this new living situation so well?  Meanwhile, I just hope they remember to do all the things that I usually have to nag them about.

I was very happy that I didn't have to go out there today on Mothers Day.  Instead, I went garden flower shopping at a nursery, went to the Northwestern Womens softball game, a walk, worked out, and then out for dinner.  Now I have to go to sleep early because I have a 7 am appointment with the anaesthesiologist tomorrow morning.

the support network

One of my biggest concerns that I have while preparing for my surgery is the care of my brother while I am incapacitated.  The nursing home is not good about changing his hearing aid battery and shaving him. Also, I wonder how even if I can drive if I am going to be able to lift his walker into the car so I can take him out of the nursing home at least once a week, which I have been doing since he got there.

So I called the nursing home administrator, who is new.  I just got a collection agency bill from the doctor's billing service, which doesn't accept medicaid.  I have a very difficult time understanding how a nursing home can use a doctor that doesn't accept medicaid when there are people on medicaid who live there.  The original administrator told me to ignore the bills, that she would call the doctors office and take care of it.  She obviously never did.  The new ones told me that she knows this is a problem and is about to call the doctor and tell him to start accepting medicaid or they will find a new doctor.  She said for right now, most families pay the bills.  They are not much right now because my brother also has insurance, but there is going to be a six month period where he doesn't have insurance and also doesn't have medicare.  (what a great health care system we have!). I just paid the bill last night.

Then I told her about my upcoming surgery, about the lost clothes, shaving, the need for the CNTs to make sure that they walk my brother and do chair exercises, etc.  I told her that when I get bills (the bills take into account that my brother gets SSI, all that money minus $30 goes to the nursing home) it would be great if they would say what month they are for so I can keep them for the trust records,  We'll see if she delivers.

Last night, I asked my husband if he would be willing to visit my brother while I was incapacitated.  He agreed, and also assured me that if the cancer turns out to be serious, he will assume responsibility for him.  I hate to stick him with this, it never occurred to me that I might not outlive my brother.

All this is pretty morose, I am hoping, and it is likely, that all I need is a hysterectomy and that's it, and that I willl be back on my feet in a month.  Nevertheless, these thoughts have crossed my mind, especially in the middle of the night.  I wouldn't wish this on anyone.

surprise

Well, I was going to write about deciding to get my brother's cataracts done through the nursing home's doctor rather than his present doctor who refuses to do medicaid.  His insurance will pay about 75% of the cost, but why not have medicaid pay the rest?

However, on Friday, I was very surprised to find out that I have endometrial cancer,it was totally unexpected.  I'm not going to go into the details, because this blog is supposed to be about caretaking and not about me.  Hopefully, I will just have to get a hysterectomy and won't  need extra treatment, but it's obvious there is going to be some down time this summer.  I am feeling very badly about placing the burden of taking care of my brother on my husband.  We have had to do so much because of him, and the caretaking I have had to do for my parents when they were aging and dying.  I am also worried about my teenage daughter's mental health, she has spent her whole teen years living through multiple, serious, health crises that we have had to deal with as a family.

I am pretty sure stress has played a role in my health, it's one of the reasons I decided to place my brother in a nursing home.  Now I have to start thinking about changing job conditions.

the day/evening went well

Today, I took my brother home to my house for the first time since he has been in the nursing home.  It has been surprisingly easy, probably the fact that it wasn't raining or snowing helped.  The nursing home gave me pull ups for him which it turned out he didn't even need.  I had him sit in the car for 5 minutes while I ran in to get some extra ingredients for dinner.  Then we went to the Northwestern University womens softball game.  Because it was Easter, the crowd was fairly thin and it was easy to get him a seat on the first row of the bleachers so I didn't need to ask anyone to move.  He was strong enough to make it to the stands from the car.  It's really great that the American Disability Act has forced establishments to build ramps, it really helped in this case.  I was surprised to see another physically disabled person in a wheelchair at the same game.

It was good to get him fresh air and just out in society.  My husband and daughter eventually joined us and it was just a nice, brief family kind of thing.

Then we went back to my house and I sat him in a chair with arms and had him watch a basketball on TV until my husband and daughter returned.  By that time friends had come over and we had a pleasant dinner.  My husband is now driving my brother back to the nursing home.  I am pretty tired, to say the least, but feel very glad that we all put in the extra effort today, it wasn't that big a deal.

certified mail

I received a notice that the postman had tried to deliver certified mail from the nursing home to me on Wednesday.  Of course, it took me until Saturday to locate it's where abouts, so I had several days to worry about what in the world they were sending me a certified letter about.  They have recently taken on a new administrator and several key home mangers had suddenly "disappeared".  I wondered if my brother was going to get kicked out, lose his medicaid bed, etc.

It turns out it was just quarterly report of his "trust" account. (I put some cash in an account for him so he buy incidentals, like lunch from a take out place that the nursing home brings in, etc.)

It was a little stressful to wait and see what the envelope was about.  It just shows you the state of social services in this country and how fragile the delivery system is, that you have to worry about it all the time.

Today, I go to pick him up in a few hours to bring him over to my house for a while. We are hoping to bring him to a Northwestern University women's softball game for a bit, we'll see if we can transport him and find him a comfortable place to sit.  (assuming that it doesn't rain, which it could.)

Tuesday evening visit

My brother seemed ok tonight, not quite as hoarse as last weekend.  I noticed they are giving him a dietary supplement, probably because I have made some noise about his health.  He seems to be breathing heavily which is not a good sign.  I understand the lack of appetite may be caused by the congestive heart failure, at least that's what I read on the Internet.  I asked my brother to spend Sunday afternoon with me and my family at my house, he seemed pleased.

It is really nasty outside, 37 degrees F and storming with ligthening, and it's already the end of April.  I am happy to be back home.

is another crisis developing

Last night we got home from my husband's birthday party and got a message on the machine telling me that my brother had fallen, not to worry, that he was fine. Apparently, one of the other patients had dropped something and he bent down to pick it up.  It is the staff's assumption that it's a balance problem, but I immediately called them and let them know about the incident earlier in the morning where I wasn't sure if he was passing out at breakfast.  I am not sure if I really got through to the nurse either yesterday morning or last night.

I had left a message for the patient advocate but she has yet to call back.  She doesn't start until noon.  My plan is to try and call her, and if that doesn't work, call the nurse practitioner.  The problem is that it is Sunday and I'm not sure who is working today.

This may be nothing, or it may be the beginning of something, who knows?   At least it's not solely my responsibility anymore, like it was when he was living alone.  In the old days, I would constantly be worrying about him until he got bad enough to go to the emergency room (and then I would really start worrying after that.)  I think I have really begun to accept the situation now.

hoarse

I went to visit my brother today with my husband. We decided around 8 am to go visit him in time to take him out to breakfast.  I spent 45 minutes on the phone trying to get in touch with the nursing home so I could tell him not to eat, but no one answered the phone at any of the nurses desks the whole time.  When we got there he had already eaten, but we took him out anyway, he had coffee with us while we ate breakfast.

He was in ok spirits, but looked kind of tired and he was hoarse.  He said he thought he was getting a cold.  Then a strange thing happen he kind of either had a seizure or was  beginning to pass our or something, but then he jerked back to normal.  This only took a second or so.

Last week, I remarked to my family that something didn't look right.  At that time, I spoke with my brother about it and he said he wasn't sleeping well because they were waking him up to change his diaper.  He said the same thing again today.  Now I'm not sure this is only because he has a cold and he's not sleeping.  Or maybe this cold is going to turn into congestive heart failure troubles.  I really trust my sixth sense about him and his health, I have predicted pretty accurately every time he is about to get into a medical crisis.  Basically what happens is that you have to wait for his condition to get bad enough for someone to be able to figure out what the problem is, because he can't articulate what he is feeling.  (or maybe he just doesn't feel it, who knows?)

Or maybe I am just obsessing.  I stopped by to tell the nurse to keep an eye on him, but it was one of the well meaning ones who doesn't speak English very well and I'm a little concerned she didn't understand what I was saying.  I left a message for the patient advocate, who has been very, very helpful in the past, but she hasn't called me back yet.  Oh well, at least he's not by himself and I don't have to run over there twice a day to keep an eye on him.  That is very good.

I have arranged for him to be able to sit outside on his own if he wants, but they haven't found his missing clothes yet.

vacation

I was able to take a week's vacation with my family and just came back.  Frankly it was wonderful to finally be able to leave town without worrying that I was going to get a call that someone in my family was back in the hospital.  This is the first time in around 5 years that I have felt that way.  Our caseworker visited with my brother when I was gone and I hear that went well, although she said he wasn't shaved well and that she noticed a wet spot on the chair when he stood up and she had to get his diaper changed.  The fact that he can't get it together to ask for these simple tasks of daily living disturbs me, but it also reminds me why he can't live in assisted living anymore.

I visited with him today, as soon as I got back in town.  (I had called twice while I was gone.)  He looked a little tired and his voice was hoarse.  I asked him if he was drinking (he got irritated with me for asking) and later I asked him if he was sleeping well.  It turns out they woke him up last night to change his diaper.

We stopped at a Wendy's to get him a grilled chicken sandwich and then I took him to a local forest preserve to have lunch.  It was in the eighties and a lovely day, with a very nice warm, not hot, breeze.  When we got back, he seemed to take a lot of pleasure in smugly telling the other patients what a beautiful day it was.

Earlier in my visit, we walked around and tried to figure out where he can go to sit outside now that the weather is getting better.  It turn out the only sitting place we can find is for Alzheimer's patients, and they have rules about not going outside without an attendant. I will have to call this week and find out what the story is  But it makes me feel bad that he and the other patients don't have easy access to go outside.

I also opened up a bill where they are charging me twice as much as they are supposed to for the additional physical therapy that I have arranged for him to receive.  I will have to call about that, too, on Monday.  It's always something.  At least I got a week off without having to worry about it, though, that was very nice!

last visit before vacation

I got in to see my brother a little late tonight, because my daughter was playing in an after school softball game (6-3, her favor).  He was chipper but a little disgruntled because they hadn't served him a beverage or desert tonight.  He also needed a shave really bad, and he said he hadn't had a shower since last Thursday.  So on my way out I stopped with the night nurse and told her.  She was apologetic, but in the past, she doesn't seem to be able to address neglect well  I will have to call the patient advocate tomorrow.  The good news, is that they did start changing his hearing aid battery, which is quite a relief, I was worried that they would continue to forget when I go out of town.

None the less, I did not feel that guilty saying goodbye to him.  I told  him that I felt better than I have in a long time going out of town, because I knew he was in such good shape.  I also called his case manager, who has been out of the picture for more than a month (that's ok, she had been knocking her self out for him for years, and she deserved a break), and left a message to see if she could visit him while I am away.

a good day

I went with my daughter today to visit my brother and he was in a really, really good mood, just bursting to tell me about his week.  It turns out they had a bake sale at the nursing home where some of the clients helped bake (he made blueberry muffins and brownies) the merchandise.  Then he proudly told me he had won 6 times in a row at some kind of dice game.  Over lunch at Wendy's, after some prodding, we finally figured out he had been playing craps.

The staff seems to really like him, and they seem very kind to him, this is so different than the last two nursing homes he was in.  I was telling my husband when I got home how wierd it feels not to feel guilty about him or going on vacation.

We did have an interesting experience when we came in to pick him up.  He can alway be found in a fairly large activity room, when they are having an activity, it is packed by seniors and others in various degrees of disability, and only a few, besides him, are not in wheelchairs but on walkers.  So we walk in, the room is packed, and we hear Klezmer music being played on a boom box, the kind of music where you just need to sway or move around in time to the music.  But everyone (including my brother) is just sitting there with blank expressions on their faces, I wouldn't exactly say they were rapt, there was no sign of pleasure, really no sign of movement at all.  It turns our we walked right into the Jewish Saturday service.  My brother has never gone to temple since my parents had us go as teenagers for two years, so this was kind of a surprise for me.  The rabbi told me that my brother was participating, whatever that means.  Later, thinking about it, it probably shocked him that I would interrupt a service, but I didn't even know what was going on until it was too late.  As we were walking out the door (it takes a while to get my brother prepared) the rabbi mentioned that there was going to be a Passover service the Sunday of Passover.  Since I have no idea when Passover is, I asked him what the date was (he told me, I have since forgotten.)  I wonder what the rabbi thinks of all this.  Organized religion is just not my thing, but if it keeps my brother busy, it's ok with me!

12:30 AM

I was woken up last night by the nursing home at 12:30 am, informing me (I think, I was pretty groggy) that my brother had cut himself on the leg, but that it was nothing to worry about.  I asked them why they were calling me in the middle of the night if there was nothing to worry about, they said it was the rule.

So I am trying to call today and find out what really happened and see if I can get them to wait until the morning if it's a run of mill minor injury.  Of course, I didn't sleep very well after the call.

haven't written in a while

I haven't written in a while because about a week ago, I wrote a long, contemplative post and then I lost it and it didn't get posted.  That kind of deflated me for a while.  Today, I don't feel that introspective.

I visited with my brother yesterday.  We are fallen into a nice pattern, I try to visit him twice a week, once on Saturday, where I either take him out for breakfast or lunch, and then an evening night, usually Tuesday.  Since the days are getting longer, and the weather is getting warmer, I hope to be able to get him outside during the week too.

 Yesterday, when we were out at breakfast, he told me that his roommate was dying. By this, he meant that he thought the end was coming in.  He said the roommate had "rectal" problems, and that a lot of nurses were coming in.  He also told me that a priest had come in for another patient to give the patient his last rites. 

My brother's roommate is a nice man, but has kept the room totally dark with no lights.  He hasn't been out of his bed the entire time my brother has been there.  One time he called to me and asked me to get the nursing staff because his diaper needed to be changed and they hadn't come for an hour.  I was happy to help out in that instance.  Occasionally I peek over the curtain to see how he is doing, but I don't like to be intrusive.  He looks like he is in his early fifties, and I suspect he has cancer.  He has been on oxygen ever since I have met him.  My brother deals with this by never being in his room.  That is ok, because he probably would not be in his room anyhow, he is the kind of person who likes to be around hubbub, even though he has a hard time initiating long conversations.

But on my way out of the nursing home, I did stop and ask the nurse what the situation is.  It turns out the roommate is in hospice, but his death is not imminent.  I mentioned to the nurse that even though my brother doesn't complain, it does effect him, they should be aware of it.  The nurse offered to move him, but I told her my brother doesn't react well to change and that was not what I was asking for.  It's kind of gruesome, but I did ask that he get a window bed when the roommate passes away.

When I told my husband about this later, we discussed the fact that in any other situation, counseling would be offered to all those around.  Think about it when someone in a school or office gets hurt, etc.  However, in a nursing home, death is so common, I don't think it is even on the radar screen that other patients may need counseling.

My brother is looking much better, and now he, too, looks like he might live a lot longer than anyone thought just a couple of months ago.  He remarked that he expected to be living in the home for the next twenty years.  I kind of winced at that, although I would be happy to have him alive, it is very hard for me to imagine visiting with him twice a week for the next 20 years, it takes a lot out of me every time I go.  It's not like I mind seeing my brother, I even kind of enjoy it, it's the grind of the driving and the responsibility that if I don't visit with him, nobody else is going to do it.  (My husband goes may be once or twice a month).

This has been a very interesting aspect of life, I am glad I am chronicling it by writing all this down.

lost my post

Ug.  I just lost a post that took me half an hour to write.  I am too tired to start again.  Maybe I will do it tomorrow night. 

tuesday

It is Tuesday night, time for me to go visit my brother.  I try to visit him once in the evening during the week and once on the weekend.  I take the train home from downtown Chicago, stop at my home and grab a diet Coke for the caffeine. Usually I am pretty tired.  Today was a hard day at work, I work for US EPA and the working climate is kind of depressing.  Resources are shrinking, people are bailing out and retiring as soon as they can, and everyone is trying to do more with less.  Management keeps on changing.  It's impossible to lay people off who have stopped working years ago.  The Agency is under attack by some elements of Congress.

So I got home and got into what was my Dad's car.  It's a 92 Camry and falling apart, but I like to drive it because it reminds me of my parents.  My father passed away last year, my mother in 2006.  Then it's a 30 minute drive to the nursing home.  So far, I haven't minded that part that much.  It's some time to myself, and I get to listen to the radio, which I never do because I take public transportation to work, and the rest of the time I try to walk as much as possible.  It's even a bit relaxing.

Today I found my brother in the activities/dining room with his head resting on the table.  I didn't like that. However, he perked up once I got there.  I changed his hearing aid (I still haven't gotten the staff tuned into that task), we sat in the tv lounge, and then we went for a walk in the building.  He hasn't looked to good lately, his skin has been looking kind of orange or red,, a little flushed.  Today I looked closely and realized that he was dirty.  It turns out it has been more than a week since he has been showered.  It's the day time CNAs that are supposed to bathe him, but I did speak to the evening nurse and hopefully he will get a shower tonight.  I stopped by the director of nursing and spoke to her about it.  I didn't even get an apology.

But despite these issues, he seems ok and he is adjusted.  I just hope it lasts and that the boredom doesn't completely do him in.  I am very appreciative that he is not reproachful towards me.  I felt a little bad when I told him that I wasn't coming to visit this weekend because I am taking my daughter to a college tour in Ohio.

I am feeling good that I don't have to visit him for several days.  I hope I can relax a bit on this trip,although the college thing brings on its own stress.

Here's testimony that I submitted to the Administration on Developmental Disabilities;  http://www.envision2010.net/comment_submit.php   You can do it too!

My brother has pervasive disability syndrome and cerebral palsy (C.P.).  He was a fairly high functioning adult, living in a Supported Living Arrangement and holding down a series of jobs, the last one for more than 10 years as a supply clerk at a school.  He is currently 62.

My brother did fairly well until there were two catastrophic events.  His best friend and roommate died about 7 years ago, right around the time he started to lose a lot of muscle strength and developed afibrillation (afib).  My parents have also passed away in the last 5 years.

My family was shocked to find out that his roommate was doing most of Barry’s housework and helping out with his essential daily living.  It turns out his roommate was doing the cooking, cleaning, and even taking care of my brother's hygiene by insisting that he shower, and shaving him (my brother has a very heavy beard and cannot shave because of his C.P.

At the same time, it became apparent he was losing a lot of muscle mass.  He started falling a lot, broke bones, and it took several years for it to become obvious he also had afib.  We were fortunate in that as he was working, he had pretty good health insurance.  But the insurance company did not understand that he could not live on his own with a broken foot because of his CP, and had to be in a skilled nursing facility.  I think the CP was also a reason for why my brother doesn’t heal very quickly, he was in a cast for 10 weeks for a broken bone in his foot.)  The issue is that once he is incapacitate and sedentary, he starts losing muscle mass very quickly and all the more needs physical therapy.

When my parents entered their eighties, it became obvious I had to start managing my brother’s living and medical situation, which I am still doing.

I have never been able to find a suitable living situation for my brother.  He needs 24-7 supervision for taking at least 7-8 medications a day with different timetables.  He needs to be stood over to eat and walk (he has lost about 60-70 lbs and is almost anorexic).  He gets depressed.  He needs activities to keep his mind and body busy.  Cognitively, he needs to be with people like himself, but to my knowledge, the State of Illinois does not have even one program for a person such as him.

I had him in assisted living for a year (assisted living had refused him in the past because they didn’t want someone with developmental disabilities, but I think I finally found a place for him because the economy is so bad, they will take anyone who has the money.)  I am fortunate because my parents planned ahead and left me some funds for him.  However, he needed more supervision that the residence could offer.  He has been in the hospital at least 8-10 times in the last two years, and has almost died three times this year, twice from an infected gall bladder where he went septic, and once from congestive heart failure.  

He is now in a fairly decent nursing home in a Medicaid bed (and that is a whole other story, I could go on and on about how prejudicial nursing homes are towards the developmentally disabled because they are afraid they will live forever and are too much trouble) and adjusting.  However, he is only 62 and does not belong on a floor with stroke victims and people who are wheel chair bound (he is using a walker.)

When I was growing up I always knew I was going to have to take care of my brother, but I never dreamed it would be so difficult and time consuming, let alone so, so depressing.  It has affected my own family life (I have not been able to go on vacation for over 2 years because of my brother’s serious illnesses); I feel it has robbed me of my daughter’s teenage years, and she will be moving out of the house soon.

I have no trouble assuming responsibility for my brother’s care.  I am his only living relative, I love him, and I will do whatever I have to do to keep him alive and as happy as possible.  However, it sure would be nice if society would step up to the plate more and help out.  I can’t imagine how it must be for families who lack the financial resources that I have.

adjusting

I had a very good visit with my brother yesterday. On Saturdays, I try to take him out for lunch.  We have gone to a overpriced hot dog place and Denny's so far.  This weekend, he asked to go to Denny's again (he has a hard time making decisions and is always trying to have me choose for him, but I try to refuse).  The nursing home has an interesting location.  To the east are upper middle class to upper class homes, but to the west and north, it is more working class.  The Denny's is in a shopping center that has two Mexican groceries, a laundry mat, and a dollar store.  There are lots of Mexican families that come in for breakfast/lunch, it's kind of nice.

Actually, I find Denny's a bit overpriced.  I haven't ordered anything except a diet-coke, but my brother's breakfasts have been averaging around $8-9, and this is just for eggs, toast and hash browns with something to drink.  I pay for his meal and mine separately, so I can charge his trust fund for his meals.

At breakfast, all of a sudden he told me that he knew the nursing home was a long drive for me but that he wanted met to know that the place was "satisfactory" and that he liked the staff.  He seems to flourishing with the increased attention he is getting, and he certainly looks healthier.  For instance, he has had a lot of problems with scratches and cuts that don't heal well and then he picks at them, and now they look a lot better.  I think that he feels much safer there than at assisted living.  My brother is a man of few words, so these comments made me feel great.  I interpret them that he is adjusting tohie new environment pretty well.

His mood has really picked up since the patient advocate at the nursing home helped me get him permanently out of his wheel chair and back on his walker, where he is allowed to walk anywhere he wants on the floor.  He wants to continue physical therapy so I am purchasing a 30 minute sessions for him twice a week at $60 a half hour.  Some of this is I think he just likes the interpersonal interaction/attention he gets from the therapists, but that's ok with me for right now.  Eventually, I would like to just hire someone with a car to take him outside twice a week, and get him some real exercise by walking and going places.  It would probably help him a lot more, and cost less, but for right now I am contented with the status quo.

My husband has come up with the idea of organizing a "retirement" party for him (he never had one), where we invite a few close friends and his case manager.  I think this is a good idea and hope to do it sometime this spring.

Meanwhile, today we moved him out of his assisted living apartment.  It was pretty depressing.  His living situation has always been a bit austere, but in the last two years, it just keeps on shrinking.  He has gone from sharing a bedroom in a two bedroom town home, to a very small studio apartment to now sharing a bedroom with a very sick man who keeps the lights off on his side all the time, and there is no access to a window.  He has pants ranging in size form 40 to 32.  He is just so skin and bones now because of a loss of muscle,due to aging and cerebral palsy, that I have decided to give away some of the larger clothes.  There isn't a lot of room for his belongings in his new room, so I have to triage a lot of stuff.

At assisted living, he used to get these dead beetles that were pretty large.  When I told the managers, they started spraying his apartment weekly.  Then an entomologist at work told me they were not beetles but roaches (these guys were so large, I didn't think they qualified.)  I have only seen dead "beetles", but they freak me out.  I put all his clothes in plastic bags and then put them in my garage, and taking the bags out one by one to wash his clothes before I bring them over to the nursing home. I don't want any cross contamination going on,especially in my own house.

When I start to feel sorry for myself, I start telling myself that for one holiday weekend (I have President's Day off tomorrow), I would like to not to do any chores for my brother.  But then I figure, this is kind of like being a parent, where there are never any days off, and then it doesn't seem quite so onerous.

One last thing I would like to mention.  Lately, I have been trying to give positive reinforcement to the staff that has been taking care of my brother.  When I wrote a note to assisted living, asking them to let him out of the last two months of his lease, I did mention how important their facility had been for my brother, and how it had given him almost a year to live "independently", i.e. not with other developmentally disabled people, which had always been his personal goal.  I didn't think much about it while I was writing the note, it was just stating the obvious to me.  But when the manager called me to let me know they were letting me out of the lease, she was quite appreciative of the message.  So the next day, after my brother told me he liked where he was living, I called the patient advocate and told her that she had a lot to do with his adjustment and she just beamed.  My husband and I think that the staff probably just hears from people when things are going wrong, not when they are going good.

Next Sunday, our little group of Chicago Siblings of people with developmental disabilities is getting together for lunch/coffee and I am really looking forward to it.  It is really great to get together with people who are so supportive and non-judgemental.  It is a bit awkward because we know each other mainly through the internet, but very well worth attending.

transition

Saturday, my husband and I took my brother out for lunch at SuperDawg for a hot dog.  SuperDawg is one of those 1960s type drive ins, we went there on the recommendation of the receptionist at the nursing home.  I don't eat meat, so I ate some of my brother's french fries.  My husband had a milkshake.  The whole thing was overpriced.  When we were walking into the restaurant, my brother's pants fell down.  That's because he has lost so much weight, and he failed to use his belt.  We had to holdup his pants from  behind for the rest of the excursion.

I think this episode brought home to my husband how little my brother seems to be able to do for himself these days.  Sometimes I think he thinks I was a little to quick to pull the trigger on my brother and assisted living.  He is willing to cop that I was doing about 95% of the work to keep my brother going.  Anyhow, I'm glad he saw this incident, although I'm sad my brother is in such a state.

Today I spent some time on the phone with various people from the nursing home.  I am trying to straighten out with them that my brother has both private insurance (which will no longer pay for the nursing home) but also is on public aid.  This is a very rare situation, and is because the State of Illinois has a program where the disabled who are working can get on medicaid.  Once you're on, you can stay on, whether or not you continue working.  So my brother has it.  But it causes a zillion headaches because the health providers are not used to having to bill medicaid after the insurance pays.  So the nursing home billing people first told me to call the pharmacy about the billing situation, and I pushed it back on them.  Then the billing person told me it was the nurses responsibility since they order the medication.  Then the nurses told me that it was the responsibility of the billing department, etc., etc, etc.

The next issue was physical therapy.  My brother is now falling between the cracks because the insurance company is no longer paying for physical therapy, and they didn't realize that medicaid would pay for 3 sessions a week.  We had a "care session" last week with the physical therapists and they guaranteed me that they would write into  his orders that the CNTs would have to walk him at least twice a day, and of course, no one is doing a damn thing.  He is just sitting in a wheelchair all day long, and every day he doesn't move, he loses muscle mass.  Today I was told to talk to the head physical therapist, of course she didn't call me back today.  I will try again tomorrow.

And at lunch time, I walked over to the jewelry center to have my brother's watch fixed.  I had bought him a cheap replacement watch but the link band (that's the only kind he can use, one that has a flexible strap because of his cerebral palsy) was was too big because he has no muscle left on his wrist.  So I gave the new watch to my husband, I have no interest in running to the store and returning the new watch.  My husband seemed pleased.  Sunday I bought him new hearing aid batteries, and was pretty pleased with my self for remembering, but now I can't remember where I put them.  I hope they turn up.

And tonight, I spent at least an hour trying to figure out the finances that I have inherited from my father.  I suppose I shouldn't complain about that, at least my parents were able to leave me hopefully enough funds to keep my brother comfortable in a nursing home, at least as long as he is on public aid.  I am paying $500/month for Cobra insurance payments because I think he gets much better care when he is privately insured than when he is only on public aid.  If he ends up back in the hospital, and stays there more than 10 days, which with him is always a possibility, he could lose his medicaid bed, so I need a backup.  There is a 6 month period, from January 2012, when his Cobra runs out, and July, 2012, when his medicare starts (he gets to start early because he is disabled.) All this is so complicated!

I should have been practicing the fiddle tonight.  I still sound very schreechy, but I have a wonderful teacher.  I think he may be burning the candles at both ends.  He is a mechanical engineer/salesman during the day and a fiddler at night.  My lessons are on Saturday morning. This last weekend, he called to cancel because he had been playing at a gig until 6 am.  Maybe I will take a nice hot bath instead.

less bills

one good thing about going on medicaid, I don't have to pay nearly as many bills anymore, the nursing home takes care of it.  that has been a huge headache, I'm still getting notices about my father's bills, and he died a year ago.

today they called me to let me know insurance is going to stop paying on Friday, and medicaid takes over.  I am actually happy about this because it leaves probably at least 30 days in the insurance bank in case my brother goes back in the hospital for more than 10 days and loses his medicaid bed.

I have had a cold, and I'm pretty glad I don't have it on the days I am supposed to see him, because I really, really don't want him to catch any colds from me.  I didn't go to work today, it felt pretty good, I think I am kind of warn out and I needed the rest.

moving to the second floor

I had my brother moved to the second floor on Friday.  That's the floor for "extended care", the "lifers".  I had him moved early because he wasn't having any interaction with any of the patients on his floor, there were no activities, and the patients eat in their rooms by themselves.  I was a little worried about how it was going to work out.  When I went to visit him on Sunday, I found him slumped over in his wheel chair, kind of comatose.  I took him out to Denny's for Sunday breakfast and he perked up.  Still, I was worried and kept on telling myself that I needed to let go, there were just things that I couldn't control.  It wasn't working very well for me.

So I was greatly relieved when I went to visit him Tuesday night.  He was sitting up straight and in a dining room with about 7 other patients who obviously were living in the nursing home because of physical disabilities (Illinois is notorious for not providing for group homes for the disabled.)  It was a motley crew, but the people seemed nice and very happy to have me in the room to talk to.  And I was happy to have more people to have a conversation, I think that I have mentioned that it can often be difficult to keep a conversation going with my brother.  My brother was very engaged, interacting, and almost in a jovial mood.  I don't know if they have started giving him anti-depressants or not (I kind of doubt it, they never do something the first time you ask for it), but I sure hope this lasts!

It made me reflect on the very long journey we have taken since my brother's best friend died 6 years ago and I realized that I was going to really step up to the plate and manage my brother.  (he often refers to me as his "manager" to non-family members as a joke). But that's a long story, I have a cold, I'm tired, and I'm going to go to bed and try to rest so I can go to work tomorrow.  (I am a little worried about my brother catching my cold, that's how he landed in the hospital with congestive heart failure just last month.)

things are getting a little easier

I just spent about 45 minutes instead of the usual two hours paying my brothers bills and keeping all the trust accounts.  I think things are going to be a lot easier with him on Medicaid in the nursing home, there aren't going to be nearly as many purchases and bills. 

moving into extended care

Today I pulled the trigger and put my brother on the extended care floor.  We had a "care" meeting today, I was surprised that only the social worker and physical and occupational therapists showed up. There were no medical people present.   They had no plan for his future.  I kind of put on my management hat and started telling them my goals for him was to get him open access on the floor to walk with a walker (they still have him in a wheelchair unnecessarily), out of diapers (at least during the day), and doing more activities.  I asked for consideration for anti-depressants and/or appetite enhancers (he is losing lots of weight), and told them he needed cataract surgery and asked them to coordinate with our case manager to make it happen.  I asked very nicely why they haven't shaved or bathed him but once. 

I told them I wasn't leaving until it was settled whether they had a public aid bed available for him, that I was going to take him out and save however many days for skilled nursing he still has from his insurance otherwise.  Wonder upon wonders, they have agreed to move him to a public aid bed tonight!  The only bad news was the report that he is still getting out of breath when he exercises.

The nurse supervisor wasn't there, so I talked to the floor nurse.  She had no idea he was supposed to be weighed daily because of his congestive heart failure, and no idea how much he weighed (she said she would have to go look it up in the computer.)  I mentioned that I had called and requested that they replace the battery in his hearing aid (which they hadn't done when I was there, this was 2 days after the request.)   I decided to put this all on hold because he is moving to a different floor with different staff, it would be a waste of time.

I am hoping that once he becomes a permanent resident, the second floor staff and he will get to know each other better and that the staff will understand his needs.  Barry said his main concern was that he will be ignored on the second floor.  Since he has hung out there a bit this last month, he may have a legitimate concern.  I am going to have to keep an eye on all this.  On the other hand, they have group dining, and daily activities that are all scheduled that didn't exist for the skilled nursing floor.  The activities director has been very helpful.  She is a young woman who majored in autism in school so she likes working with my brother.

My case manager is very supportive and thinks this is a wise move, given that he has been in and out of the hospital so much in the last two years and our last 2 experiences in nursing homes which were very bad.  By comparison, this place looks great!

I was pretty stressed out about making this decision, I am sad that his health has gotten this point, but I see no other alternative to keeping him alive and keeping my sanity, my health, and the emotional well being of my own family.

me -1; nursing home -0

Today I got home and found out I had a message on our voice mail.  It was my brother's cardiologist's office, calling to "remind" me that he has an appointment at 1:30 tomorrow afternoon.  The nursing home had made the appointment, and nobody let me know about it.

So I called the nursing home to ask them if they knew about it.  It was obvious that the nurse had forgotten that she had made an appointment for him.  I asked how was he going to get to the doctor's office.  She asked me if he could go on his own, and I said no.  I also told her there was no way I could miss work with less than 24 hours notice.

She got her boss to call me who told me that it was my fault that I didn't know about the appointment, that I must have known, otherwise, why would have I called.  I told her about the message from the doctor's office and that it was their responsibility to keep me informed. At first they refused to find him an escort, saying it was the family's responsibility, but after I called the front desk and asked them to page whoever was in charge of the building (it was after hours, and the receptionist gave me a hard time), all of a sudden they found one for him.

As it is, I am going to have to rearrange my meetings at work so that I can talk to the doctor on the phone when he sees my brother.

I work for a federal bureaucracy.  I think wading through the bureaucratic maze there has given me some skill sets that are very useful for this kind of thing.  But I resent that I even have to get involved.  And in the long run, it's the nursing home that holds the upper hand. You can't be too much of a pain, or they will take it out on my brother.

I'm going to visit him tomorrow evening.  When I go, I have to remind them to get him a phone where he can hear the ring.  He is hard of hearing, on top of everything else.

strange incident

I visited with my brother at the nursing home on Saturday.  We went to play bingo, it was at the suggestion of the patient advocate.  As she was showing us the way, we came across a humongous patient, whose name was "Mama".  Mama looked like she weighed around 400+ lbs.  She seemed to come from the old country, she was dressed in various layers and had tons of jewelry on, including many with religious significance.  It was very hard to understand her speak, she had a heavy accent, spoke almost completely in Italian, and most of it was garbled.  But it seemed like everyone really liked her, and that she was a woman generous in spirit.  The patient advocate, Cathy, wheeled her with us and we approached the bingo room at the same time.

 We found about 20 patients, all elderly women with the exception of 1 man, sitting around several tables.  Almost all were in wheel chairs, several on oxygen.  The game was pretty mellow, if you won, you got a piece of candy or a cookie.  My brother played quietly and even won a game. Then of a sudden we heard a large crash and a scream, a big racket.  Mama had fallen out of her wheel chair, fortunately landing straight on her butt with her legs out in front of her.  She was quite upset.  There was only one staff in the room who immediately ran out to get help.  Help took the form of 2-3 very small (no more than 5'2") nurses aides who stood around and tried to figure out the protocol.  They were afraid to move her in case she was injured, and they sure weren't going to be able to lift her without more aid.

This was the biggest thing that had happened all day, maybe all week.  The ladies started clucking, making remarks about Mama luckily being cushioned by her size, how she must have leaned over for a bingo chip and tipped the cart, etc.  It was getting pretty chaotic, so I slipped out with my brother.

On the way back to his room, he got really tired, even though he was using oxygen, scarily so.  I thought I was going to have to have him sit on his walker, which has a seat.  I firmly grabbed him by his arm and held him up and he sank into his chair with relief when he got to his room.

This made me kind of anxious, and I woke up a lot that night, worrying about his congestive heart failure.  It seems very unlikely that he is going to be able to live independently anymore, even with assisted living.