bananas

I went to go see my brother this Saturday.  He wasn't ready yet, so I went up to his room.  I looked at this walker, his compartment for storing stuff he wants to take around with him was stuffed.  So I asked to look inside.  There were 10-12 bananas inside, in varying stages of decay.  When I asked him to take them out, he got aggravated but agreed.  but he insisted on putting them into his refrigerator, he refused to throw them out!  There were also a NY Times and about 10 magazines that I asked him to take out and just leave in his room until we got back.  He stuffs the compartment so full that the walker is breaking.  Sometimes only 3 instead of 4 wheels are on the ground, and it is a pain to fold and lift into the car because the compartment won't fold up if it is stuffed.

He also refused to throw out the old newspaper, and he stuffed that into an "empty" drawer that was filled to the brim with newspapers.

We had an interesting conversation about the issue.  In terms of the bananas, there's a lady who is 101 years old who sits with him on the seventh floor lobby in the evenings and she gives him two bananas every night, along with one or two graham crackers that she has taken out of their celllophane packages.  He also gets two bananas.  I think the idea is that this is how the patients can keep up their potassium levels.  Anyway, he doesn't feel like  he can say no, so he just keeps them.

I suggested that he talk to the head nurse and explain the problem, and ask where he should put the bananas once the lady goes to bed.  Or he could talk to the social worker.  I plan to give him a few days and if the problem isn't fixed, I will have to call them myself. Readers will remember that this isn't the first time I've written about hoarding food in the compartment, he used to do it all the time at the other nursing home, I would find butter, mustard, and catsup all the time.

The papers are stashed because there is a son of one the patients who comes around and asks for the arts section.  Or at least, that's what my brother says.  All I know is that there at least 3-4 drawers full of newspapers.
  
I actually found this problem a little amusing and endearing, I don't know why.   Probably because the bananas hadn't decayed enough to cause a mess.  

I think I have mentioned lately that I am feeling a bit resentful lately, suffering from feelings of being trapped.  I think most of it has to do with the issue of pending retirement (not for at least 3 more years) and wanting to "snowbird".  I don't see how I am going to be able to leave him for 4-6 weeks at a time.  It's more of an issue if my kids stay in California.  If they do, I am going to want to spend chunks of time there, and I can't figure out how to do this unless I move permanently and move my brother with me.  Then there's the issue of finding him a decent nursing home that takes medicaid...well, that's still off in the future.

Meanwhile, my husband has been visiting him during the week for me, which has helped considerably.

thanksgiving weekend 2013

I saw my brother two times this weekend.  Once for thanksgiving dinner, once for breakfast on Sunday morning.

Thanksgiving went much better this year.   We went to my son's fiance's parents' house for Thanksgiving.  My brother fell asleep almost instantly for about a half hour.  When he woke up, he was in good spirits.  This year, my brother did not wet his pants, which was quite a problem last year.

When he came to my house earlier in the day, we discovered that his hearing aid was not working again, which made me feel pretty bad, because not being able to hear isolates.  Plus I don't really like having to deal with this issue, it's a time sink, big time.  I think I am going to but him a second hearing aid so that when one goes kaput,  he has a backup.  This is not a minor decision, it will cost at least $2000.

My two kids, who are now 20 and 29, went with me for breakfast today, and it was great.  We had a good time.   Again, he was in good spirits and very talkative.

all in all, a good weekend with my brother.

birthday

Last Friday was my brother's 65th birthday.  Since it was a "big" birthday, I wanted to do something special for him.  The problem is that he has no friends, literally no one outside the nursing home.  So I invited two couples who are good friends of ours.  They both accepted an invitation to go out to dinner with my brother, but one couple bowed out because of other family comittments.

The evening went okay with one hitch.  My brother's hearing aid stopped working.  Of course he didn't tell us until we noticed that he wasn't responding to our questions. I think it is not working because the nursaing home is not cleaning it out on at least a weekly basis, which is what they are supposed to do.  I used to do it, but thought I wouldn't have to do it any more because this nursing home generally is so much better.  Frankly, it's a bit oppressive to have to do it every week.  Not because it's time consuming, it's just one more dependency my brother has on me.  It does not feel good to think that if something happened to me, he wouldn't be able to hear. I really don't like doing it for that reason.

My husband and I left the next day after the birthday dinner to go to a retirement party for my sister-in-law, who is retiring at 73.  It was up in Minnesota.  As soon as I got back, I went back to work and immediately after work drove to the nursing home to pick up the hearing aid.  The hearing aid store has really bad hours, it's only open during the week from 9-4pm or so, meaning that someone has to miss work twice, once to drop it off, once to pick it up after it's been fixed.  It's not a big deal to drive over and do the task, but again, it's oppressive to have to do it, and to be the only one who does.  This time my husband is helping me out and dropping it off for me.

I am tired of this caretaking.  I am tired of visiting and having my brother expect me to entertain him, which is very difficult since he has difficulty participating in a conversation.  I do not want to have to do this twice a week until I get too infirm myself to do it anymore.  I know these feelings come in cycles, and that I will be get over it.  But I am still feeling it anyway.

Did I tell you at the end of the dinner while we were waiting for my husband to pick us up, my brother gave me a hug and thanked me for the evening?  (He rarely shows any physical affection.)  I felt very good about that.

teeth

Today, my brother finally got two teeth pulled.  This has been a long time coming.  Due to lots of other caretaking responsiblities, his mouth was put on the backburner for years.  When he finally moved into a nursing home that had a visiting dentist, he finally got his teeth cleaned, and it turned out he needed two teeth pulled to prevent infection.

It seemed like a good idea to me so we went forward with it.  Unfortunately, rather than raise taxes in Illinois, our state legislature cut off dental work from Medicaid.  So I am going to have to private pay for the work.  It's necessary, so we did it.

Meanwhile, he came back with instructions to eat soft food, so he has taken it into his head he can't have anything for dinner.  I am going to have to call the nurse tomorrow and make sure that they are aware he is not eating and supervise his intake.

It's always something with him.

hoarding

I took my brother out for breakfast today.  While I was there I looked for his pants.  It turns out they were in his closet after all.  I was relieved.

He was still grumpy today and looked a little short of breath.  I will call the new nurse practitioner on Monday and go over my brother's medical history.

When I was looking for his pants, I opened up several of his drawers and they were crammed with old New York Times.  The basket for his walker was so crammed with old magazines that I couldn't fold it to get it into the car.  So when we got back to the nursing home, I sat down with him and persuaded him to get rid of anything in his walker published before September 2013.  He even had a magazine form 2012!

Not to mention 4 bananas, but they looked fairly fresh.  When I said I would take one home to eat, he wouldn't let me!!

This week we have a CARE meeting (a meeting held every 3 months with nursing home staff to discuss his situation) and I will bring up the hoarding.

When he is disagreeable, it puts my nerves on edge, and the visit is not enjoyable.  I suspect there are two reasons for his bad mood:  he is getting stir crazy and he may not be feeling well.  I will try to take him to the movies or somewhere this weekend.

furlough

I'm on government furlough, so the first full day I had off I took advantage of to visit my brother.  He seemed a bit grumpy, and kept on making comments about the fact that he wasn't a cripple and not disabled.  I'm not sure where it was coming from.

The nursing home has managed to lose his brand new pants, it's always something that I have to follow up on.

His oral surgeon appointment was finally made by the caretaker I pay to help me manage his medical issues.  Her mother just passed away and it took her a while to get back on her feet.  My brother, husband and I sent her a condolence card, but when I told him there was a delay in gettting the appointment he was not very understanding.

Nonetheless, he seemed to enjoy the sunshine at the outdoor restaurant I took him to.  The main challenge is to keep him stimulated, it's pretty difficult to do it    even for an hour, not to mention 24/7.

matzah brie and other matters

Today is a Satruday and I brought my brother for a pre-visit to an oral surgeon before he has two teeth taken out.  My brother's mouth is a mess, his teeth were put on the back burner because of all of his other medical issues.  At the "new" nursing home, there is a visiting dentist, so it's been much easier to address his tooth decay.  Unfortunately he needs two teeth pulled out.

Learning from the disaster of someone else taking him to the cardiologist, this time I decided I would take him.  I picked him up early because I wasn't sure of where I was going to park and how long it would take us to get into the office.  Actually, it was pretty easy, the oral surgeon is only about a mile away from the nursing home. 

But we were 45 minutes early, and the surgeon was 45 minutes late.  My brother gets fidgety and anxious if he has to wait, so I was very thankful when the surgeon walked in.  The whole visit tgook about 15 minutes, including getting new xrays.  I need to call the cardiologist and make sure it's ok for him to get the surgery, and then we are ready to go.  I am going to ask our case manager to arrange for someone else to take him in for the surgery.  Not too bad, considering that my brother contradicted me every time I raised a health issue, etc.  But ok.

Then I took him to a Jewish delicatessen located nearby and he order matzah brie.  For those of you who don't know, that's fried matzah that has been soaked in eggs.  He was in seventh heaven.

But a wierd thing happened.  My purse was on the floor and a service person picked up, gave me a wierd look, and said it should go on a chair.  I thought nothing of it until I noticed pretty soon after we left the restaurant that my cell phone was gone.  The surgeon's office was closed by then, and I went back to the restaurant to check for it but there is no phone.  I am pretty sure the waitress stole it, but I will never be able to prove it.

Too bad we didn't go to our usual restaurant!!!

Meanwhile, if I include time spent on dealing with the cell phone (I haven't replaced it yet)_, it took about 5 hours.

ready to wring his neck

My brother had an appointment to see a new cardiologist this week. I couldn't go with him because I had my own appointment for a medical procedure, and besides, I knew he had two appointments coming up at the oral surgeon, and I couldn't afford to take off that much time from work.

So I asked the case manager for the agency that I pay to help me with such matters to make the appointment and take him.  The case worker picked him up and took him and when he got to the cardiologist's office, he refused to let her come into the examination room or to speak with the doctor.  The doctor ordered a stress test and an echocardiogram, which requires another appointment.

I read the doctor's notes.  Apparently my brother denied any illness at all, problems, etc.  I had been counting on our case worker (who is also a nurse) to the translating to the doctor.

I got a call from the case worker the next day.  She was very, very upset about the way she had been treated.  I felt so bad, and I got really stressed out over my inability to control what was going on.
Then I got a call from the nursing home, because they have to move on making the appoinments, because the doctor told them he had to have the tests within two weeks. 

I asked the nursing home if they could send someone else with my brother.  They don't do that, although I did ask, what did they do if the patient had no family.  Apparently they do send someone then. 

My husband went to go speak with my brother during the day (he was working at home).  He told me he found out the issue is that my brother doesn't want to be associated with the developmentally disasbled and wants to be associated with the nursing home instead.   He thought that other patients go with nursing home staff, why can't he.

I went to visit my brother after work.  He was very irritable.  First he said he didn't like the doctor because the doctor was "too conservative" and ordered him an angiogram.  I explained that this was not the case.  He said he did not like the case worker because she asked invasive questions.  I asked for an example and he said she had asked him if he liked the new doctor.  I told him I thought she was just trying to be friendly and that would have been the first thing I would have asked him too.

I explained that the nursing home was not going to send him with staff to his appointments and that I couldn't take off all the time, that I would take off time for big events like surgery.  I explained to him all the extra work he was causing many people by not letting the caseworker talk to the doctor, about how hard it is to get doctors to call you on the phone.   He got reallymad and called me selfish, I called him selfish.  We were sitting in the garden and I assume everyone in the nursing home could hear us argue, but I didn't care. Then he did his usual shtick of getting up to walk away in anger, and was surprised when I didn't try to stop him.  I told him that he didn't have a choice, that I was trying to keep him alive, and that if he didn't let someone go with him to get information from the doctor that I was not going to take him myself, nor would I make appointments.  I think that finally sunk in. 

I suggested that we make a deal.  I suggested that he should go with the caretaker, but that he wouldn't have to chit chat with her, and that I would ask her to be business like.  All of a sudden he became agreeable and loving.

We left on good terms.

I am a bit worried that the case worker will not agree to these terms but we shall see.  More to follow.

Post July 4th picnic

I thought I was going to have a nice day with my brother on July 5.  The idea was that my husband and I should take him to the lake for a picnic dinner so that he could get into a different environment where there were some people hanging out.

We picked him up, he seemed a bit crabby.  He was having trouble hearing, perhaps because the car window was down and the wind was in his bad ear.  We stopped at a fast food restaurant and picked up sandwiches, then drove to the beach.  There was a bit of walking on grass with a light downward slope.  This really seemed to bother him and he kept on saying he couldn't do it, although he has managed other situations like this before without a lot of complaining.

We sat on a bench and started eating.  At some point he gagged and threw up a piece of food.

Internally, I just kind of freaked out  It reminded me so much of when he has lost bodily control other times, and it had been an indicator of some major medical problem developing.  But it just wasn't that.  I started to think about how I didn't want to deal with him at my son's wedding to take place next year.  Even though we have been talking about paying someone to pick him up and look after him all day, I don't want to have to have it in the back of my mind that something might happen.  I want to be able to focus on the event, the day shouldn't be about my brother, but about my son and his fiance.

After we finished eating, we went for a walk.  Almost immediately he asked me if I was tired, did I want to go back.  I pointed out to him a way on the sidewalk we could take to the car and he brightened up. For him, the distance we walked was far, and it was hardly anything.

I figure if he comes to the wedding activities, he will probably sleep through a lot of the activities, and that doesn't bother me.  What bothers me that there is a very good chance he will have an accident involving his diaper (either that or someone will have to argue with him in public about going to the bathroom all the time) and I just don't want have to deal with it.  Or he might throw up, have diarrhea, etc.  Last  year, at my in-laws to be for Thanksgiving, he wet himself.  Thankfully, we had put him on a folding chair, precisely because of this fear.  It was somewhat of a commotion to get him into the bathroom to change him and after that, we brought him home.

I brought this up later with my husband.  He is sympathetic to my issues but feels he should be included.  He asked me how I would explain to my brother that he is not invited.  I figure I can lie and tell him that the venues are not handicapped accessible.  Ouch.

Thankfully I have many months to see how he is doing and then decide.

Meanwhile, my husband and I talked about how relieved my brother seemed to be to get into his nursing home environment and that maybe we should not try to push him so much.  Next time we will take him to a restaurant where you can sit outside, I think that's about all he can handle.

After we dropped him off, we went back to the lake and went for a long walk.  It was somewhat healing.
I was feeling somewhat guildty for not seeing him on July 4th (I was in Michigan with friends), and this experience has not helped.

recovered, weather good

My brother seems to have recovered from his latest health episode.  Now the weather is finally getting good and I feel a need to get him outside and away from the nursing home.  Of course, this means that I have to give up on of my own few weekend days with good weather (so far the weather has been pretty bad this summer, lots of rain) to cart him around.

I was supposed to do it today, but spent too much time planning (booking hotel rooms) for my next vacation.    This time, I took out trip insurance on the air fare.  I sure hope he doesn't spoil another vacation with health problems.

Meanwhile, my husband has offered to bike over and take him for a walk.  The walk won't be long, he can only do a few blocks without tiring out. It would have been better to put him in the car and change his scenery more.  At least there is a four day weekend coming up and I will have an easier time finding the time to do this with him this coming weekend.

His "care" (the nursing home holds it every 3 months) meeting is coming up this week.  I plan to agitate to let him out into the garden for more hours.  They have had some patients fall when they were outside, so now they only let residents go out when there is someone in the courtyard.  I would rather take the risk that he is going to fall and break bones than keep him confined inside all the time.

everything is lovely

I took out my brother for breakfast this morning.  Although not altogether chipper, he told me he was "lovely" and not experiencing any gastro symptoms anymore.  Crisis averted!

still a little sick

I came home from a trip to South Beach yesterday.  The trip was a big success in that I did not sit and worry about my brother too much, which is a big move forward for me.  In the past, I would have been calling every day and obsessing about his health, especially since he just got out of the hospital.  But I was able to let it go, which I consider essential for my own health these days, and the mental health of the rest of my family, as well.

My daughter, who is  home from her first year from college, came as well.  The weather was really strange, half the sky was pitch black and it was downpouring, the other half, the weather coming in was sunny.  It made the lighting beautiful, but there were no rainbows to be found.

My brother was in the bathroon when we showed up.  He was by himself, and actually, I was gratified to find out he could go on his own.  But he was having some trouble keeping his pants up,and he had to go get a CNT to help him with his diaper and I think she might have helped him put on a belt too.

As soon as we got to the big sitting room, he started telling me about his health, that he was most ok, but still suffering from some kind of intestinal issues.  I will have to call the nurse practitioner tomorrow to see what that's all about.  It would make sense, in that the hospital doctors thought he had a viral gastrointestinal infection, and those can take a long time before they go away.  However, anything with my brother that doesn't go away usually can get blown up into a big deal, so I want to stay on top of it.

discharged!

I was very surprised to find out that my brother is getting discharged tonight.  It turns out now his doctors think that he's not septic.  All the heart issues, shortness of breath and fever they think was due to dehydration because he threw up so much and so violently. 

I have had a fairly good experience with the doctors, who seem to have the time to talk to you. Some of the nurses are another story however.  Even tonight, when they called me, a woman who hardly spoke English started talking about voiding (he needed to pee before they would let him go) and I had to ask her to repeat herself three times before I could understand what she was saying.

I did have to ask them to test his blood pressure upon standing up because it drops a lot and then he faints.  His blood pressure did drop, from 139 to 104, but they seemed to think it was ok.  I took his blood pressure very regularly when he was living in assisted living, and most of the time he was in the nineties, so I think he will be ok.

I have a hard time understanding why I have to point out that they need to do such tests before release.

The only good thing to come out of this is because he has lost a lot of strength by being immobilized, that he now has gotten physical therapy ordered for him.  This is a person who should have daily physical therapy for the rest of his life.  I wish the nursing home had a program where they forced people to do real exercise.

I had canceled out condo reservation for our Miami trip because I assumed that we wouldn't be able to go.  Now I am trying to resurrect it, knowing that at any moment there could be a serious relapse, but we figure that we just can't live life like that.

back to the hospital

It's been a busy last few days. Thursday night I went with my husband to Washington, DC for a family bar mitzvah.  We were having a really nice day at the Smithsonian Art Museum when we sat down for lunch and I noticed that I had several voice mails.

It turns out they were from my brother's nurse practitioner.  Mybrother had been violently throwing up, his eyes were going to the back of his head and he said he thought he was dying.  So they sent him to the ER.  Unfortunately, they sent him to the ER for the community hospital that is right next door to the nursing home. Many times, I had mentioned to the staff, and had put into his chart, to not send him there because I knew how lousy the care was. 

It took me maybe five attempts to talk to a doctor from the ER.  Meanwhile, we took a 45 minute cab drive back to the hotel.  I travel somewhat frequently to DC for my job and know what a nightmare it is to get a flight out of the city on a Friday night, so I figured we needed to rebook right away.  The airline was really nice about it and didn't charge us extra.  I finally reached the doctor and he told me it was just some kind of stomach infection, and that my brother would be discharged later in the day, that I didn't need to come home.

We went out and got some wine to celebrate, and then took a nap at the hotel.  I was woken up by another call from the doctor that said since my brother was in afib and his heart rate was 120, that he was going to keep him in overnight.  I started to get worried, because I know what happens when they start to monkey with the afib medication, my brother's blood pressure drops and then he gets into big trouble.  I was worried, but I couldn't get a flight that late anyway.

I called in the morning.  I was told to call an hour later because of the shift change.  Again, several phone calls later, I finally talked to the doctor.  She told me that his blood pressure was in the low eighties, but other than that he was "doing fine".  I decided to go to the bar mitzvah in the morning and come home in the afternoon.

Which is what we did.  Within 10 minutes of getting into my brother's room, he starts complaining of getting hot, gets extremely short of breath, and starts to twitch.  I go running out of the room and the nurse puts him on oxygen, takes his temperature, and notes that he has a fever.  After another episode about 10 minutes later, I ask for a doctor.  He is coughing constantly.  Eventually a nurse practitioner comes in and tells me there is no doctor on call.  I suggest that he may have pneumonia as a secondary infection and ask that he get an xray.  Then we go home, with me fully expecting to get a call in the middle of the night that they have put him into intensive are.  I kept my cell phone next to my pillow.

Did I mention that it was also my birthday?!!!

Today we went to visit him.  After three requests to see a doctor, she finally arrives.  It turns out that they don't know what's wrong with him at all, except that he is septic, which is life threatening.    They put him on antibiotics last night and he seems to be responding, but he's not yet out of the woods.  I can't believe they didn't call me to tell me.

I was pretty angry.  I told the doctor that it was not my job to figure out he was septic or to notice that  he was feverish and out of breath.  I told her that the nurses didn't even seem to know what they were treating (the nurse this morning told us he was in the hospital for a bladder infection).  It's not my job to put him on oxygen when he needs it.  I told her the nurse practitioner was ok and seemed to know what she was doing, but that the nurses seemed like nice people but were totally out to lunch.  She said she would speak to them and ask  them to keep a better eye on him since he couldn't advocate for himself.

We talked about physical therapy but they don't offer it at the hospital on the weekend unless you are in the ICU!!  She said she would ask the nurse to get him in a chair.  I hope they will order physical therapy for him at the nursing home, because whenever he gets bedridden, he deteriorates rapidly.  Then I asked if he was getting respiratory therapy (he has a bad cough with some fluid in the lungs).  She pointed to the device that you breathe into once an hour.  I told her he was not going to do that unless someone stood over him.  The doctor nodded her head.  She said she didn't think he needed a nebulizer, but that she would order chest compressions. 

I am having a difficult time understanding why I am having to advocate so much, this was all run of the mill treatment at the hospital that he should have gone to.

I plan to call the nursing home practitioner on Monday and let her know what has happened and why it is so important for him to be sent to the other hospital.  If necessary, I will have to move him there, which is going to cost an arm and a leg, and is very disruptive to his care.  I will have to weigh the disruption into my decision.

Meanwhile, this has all been rather disruptive in my and my family's life.  I am supposed to go with my family for a week long trip to Miamion Thursday. It's the first time I didn't buy trip insurance in a long time because he has managed to stay out of the hospital for two years.  His timing in impeccable, in the last 7-8 years, he has wrecked at least 4-5 vacations.  This will be two within a week!   It's not his fault, but it sure is a drag.   The worst part is even if I go on vacation, then I have to worry that something is going to happen when I'm gone.   And this experience has proved that if I'm not there to advocate for him, he can literally die.   I kind of dropped that anxiety in the last 6 months and now it's back.

a nice spring dinner and then some

Today is Tuesday.  It was beautiful out today, in the eighties.  I took my brother out for dinner to a shopping center where I knew we could sit outside.  I ordered an egg salad sandwich and because they ran out of egg salad, they gave me a bunch of upgrades, including two little cakes, one for me and one for my brother.  I also was able to get him a smoothie and he drank the whole thing.  It was a very nice evening and we were pretty relaxed.

But I think he ate too much.  All of a sudden he says, I have to go to the bathroom, and then boom, he poops in his diaper.  He was pretty upset, and then, of course we had to leave.  I apologized for not getting him to the bathroom in time (frankly, I don't know how I was going to get the diaper off, and I didn't have another one, anyway) and he was very embarrassed.  He also smelled up my car pretty badly on the way home.  I am still airing it out. 

I am thinking hard about how I am going to be able to manage him at my son's wedding next summer.  I do not want to have to spend a lot of time taking care of him at the wedding.  I am thinking about hiring someone to be with him all day, and it's going to be hard to find someone who knows how to take care of him.  Well, one day at a time.

chairs, part 2

Well, I got up enough nerve to call the nursing home about the chairs.  I pretty much got blown off, they said they knew that it was bad that they weren't yet out, but until they finish off the construction on the new patio, that it wasn't safe to put any out.

Nursing home 1, me and my brother, zero

chairs

I'm feeling a bit guilty.  They took away the ability to sit comfortably outside at my brothers nursing home.  It started last fall, when they tore up the front entrance, which used to have a lot of benches and chairs.  The patients would sit outside and watch the cars come and go, dropping off and picking up people.  It wasn't exactly beautiful, but there was a sense of activity.

Apparently some people fell because the concrete was on a slant.  There was also a problem with people "wandering" off the property.  So they dug it up, and supposedly they are building a side courtyard which looks like it might be pleasant, but it's walled in with a locked gate.  Meanwhile, it's not done and the weather if finally getting warm.

My brother is a bit stir crazy after being shut in for long periods of time during the winter, so he has been sitting out in front, using his walker as a chair.  Several people have been doing it, and another patient recently fell.  It could be argued easily that providing chairs is safer than having people sit in their walkers, which are not designed for long term sitting, and after all, have wheels on them.  The new "garden" is supposed to open May 20, not soon enough.

My brother is not new to falling.  Several years ago, I came to the conclusion that is was better for him to take risks and be willing to fall, and possibly severely hurt himself (he has broken bones, and believe me, it is no joke to break a bone when you have cerebral palsy and don't heal well or quickly) than to stuck in a wheel chair or inside.  He totally agrees with me. 

Meanwhile, the reason I feel guilty is that I am supposed to call the person in charge and complain, and try to persuade her to put  few chairs out in front.  I keep on forgetting to do it, I get busy at work and I don't do it.  I need to remember to do it tomorrow.

a mystery

As usual, nothing with my brother is usual.  Earlier in the month, he had gone to the dermatologist, who is the father of one for the best friends of my son.  He had a "blue mole" high on his forehead, which had changed size and a bit in color (actually smaller and blacker).  I got notice from the nurse practitioner from the nursing home that it had come back benign, but with a foreign substance, maybe from a tatoo.  My brother has never had a tatoo.

Last Wednesday night, my husband and I took my brother out for coffee.  He mentioned that the doctor had called and spoken to him for about 10 minutes and wanted to know if had ever had a wound or hurt himself at the location.  Everything sounded a little wierd, so I called back the doctor on Friday.

I was a bit worried that I wouldn't be able to speak with him, but he answered the phone directly, saying that his staff had already left for the day but that he saw my name and decided to answer.

It turns out he asked either the nursing home or the person from the agency that I still pay to help me take care of my brother to let me know that I was supposed to call him.  As I mentioned, if I hadn't spoken with my brother, I would have never known to call.

He told me that my brother's mole was hard to diagnose.  At first he thought it very well could be malignant, but it came back with a negative from pathology.  Never the less, this doctor turns out to have a speciality in melanoma, and meets with a bunch of doctors regularly to discuss cases.  Apparently he sent my brother's data all around to get some additional observations, including a well known specialist at Sloan-Kettering.

Nobody thought it was malignant, but they all thought he either had gotten a tatoo or somehow some kind of foriegn substance had entered his skin.  Of course you can't get a straight story out of my brother.  In fact, he told the doctor that he had had this mole his whole life, which he hasn't.  I told the doctor that in no way had he gotten a tatoo, but that it was possible he could have gotten some kind of trauma and never told anyone.  Even my brother said it was too bad my parents were no longer alive to give some kind of medical history on the mole.

I asked the doctor why had just hadn't taken out the whole mole.  He said he had thought about it, but that it was deep and he didn't want to do more work on my brother than he needed.  Then he started thinking about doing another biopsy.  At first I thought this was a good idea, but then I asked about whether the fact the mole had been there for at least 10 years, that it couldn't be growing that fast, had anything to do with anything.  Then he stopped himself and said, it came back benign, and that's what we should assume until something else happens.  Meanwhile, we will probably never know what the foreign substance is or my brother got it.

I hope we made the right decision.  It is really difficult to take responsibility for life and death medical issues, especially when you don't have all the information you need to make a good decision.

orange

My husband and I took my brother to see Argo on Sunday night and we had dinner too.   We were supposed to do this on Saturday, but he had thrown up, and I thought it better to let him rest for a day.  When I saw him, I remarked that he looked very tan, had he been sitting in the sun? My husband noticed it too, once I mentioned it.  Of course he hadn't, it's been very cold in Chicago until today.  I didn't think much of it.

I went to visit him Tuesday night.  Usually I go on Wednesday, but I went on Tuesday because I am going out of town on Thursday, to California, to visit my kids.  I won't be back until Monday evening.  Again, I noticed he looked kind of orange/brown.

I came home, watched a bit of TV, and then realized what was bothering me.  He looked like he had jaundice.  So I got on the internet, started poking around, and read that nausea can be linked with jaundice.  There are no good reasons to get jaundice, it often indicates hepatitis or even worse, an obstruction in the bile ducts or liver.

I didn't get much sleep that night.  I called the nurse practitioner in the morning.   I asked that in his latest labs if they took billirubin.  She said that they did and that they were normal.  That was a great relief.

Then I talked with a friend of mine who is a doctor.  After speaking with him, it sounded like I could probably go away, if some kind of problem was percolating, it probably wouldn't present itself until I got back.

At least my husband is in town, who will visit him on the weekend.  I asked him to look especially at my brother's eyes.

the hearing aid

I just got a phone call from my brother. It's Sunday afternoon, March 10, 2013.  He was quite upset, because the nursing home has misplaced his hearing aid.  I was surprised I could even talk to him because usually he has a hard time hearing on a phone, even with his hearing aid on.  I told him I would call the nurses desk and find out what's going on.

So I called and I was told that he had given it to his CN last night and now no one knows where it is.  She didn't come in today like she was supposed to.  They are calling her supervisor.  I asked them to call me one way or another.  They said ok.

It is aggravating to me that I have to find out from my brother that is missing.  This is not easy to replace.  It costs more than $2000, it means taking a day off from work to take him in, and it's another trip once it is made to make sure it works properly.

back from vacation

I just got back from vacation in San Diego, and now notice that I had a big influx in web hits on March 23.  There must have been a conference where the url was shared.  Thanks, readers!  I do wish that people would write back though.

I went and visited my brother yesterday.  He was in good spirits, I think because the nursing home has been celebrating Passover, which breaks up the monotomy.

I mentioned to him as soon as it gets warm enough to sit outside, I might want to bring sandwiches for lunch and take him out to a park instead of sit inside a restaurant.  He liked that idea.  At the last nursing home, it was kind of in the middle of no where as far as parks go.  His new nursing home is much closer to parks I am familiar with.  The problem was that he moved last October, and it's been too cold to sit outside.

I have been feeling a little down though.  My brother really looks like his health has stabilized (assuming that his visit to the dermatologist later this week doesn't turn up any skin cancer).  I should be happy about that, but I'm also thinking he can live a long time and that visiting/taking care of him is a lot of work.

I used to think that I couldn't leave him for more than 2 weeks, but now I am thinking that maybe I could squeeze in a 3 week vacation.  It was really nice not having to visit him for 7-8 days.
I am wondering if my kids are both going to end up living in California, and how it would be difficult to "snow bird" for a few months every winter.  I suppose I should just wait and see how things are going to turn out, it's too early too tell, and I'm not ready to retire yet.

hearing aid Found!

The nursing home called.  The CN had left the hearing aid on a ledge outside his room.  I made a point of reminding them how much this device costs, but alls well that ends well!

mole

I had a very nice breakfast with  my brother today.  I found a copy of the Chicago Tribune at the restaurant and read to him some of the headlines and articles.  He likes "discussing"current events, so it made the time go by a little easier.

He mentioned to me that the social worker, Becca, as well as one of the CNs really liked him a lot and he was very pleased about that.  But then he also mentioned that the nurse practioner, Ashley, told him that his "birthmark" on his forehead had changed color and size.  He was offended by her comment.

The "birthmark" is some kind of fairly large growth that has been on his forward for at least 10 years.  I remember asking a doctor about it once and there's a name for it.  It was kind of blue.  At the time, it seemed like it was ok.

So right before I left, I looked more closely at it.  It looks smaller, but very black.  I will have to call Ashley on Monday and see what this is all about.

There is always something to do when it comes with my brother.

weak

I took my brother out for breakfast this morning.  He seemed alert, not tired, but his palsy was not good (he always has palsy, sometime it is more noticeable than other times) and he was having a hard time walking.  I couldn't tell if it was because he thought there was ice on the sidewalk (there wasn't, but there was snow on the side), which makes him very cautious.  On the other hand he seemed to have a hard time going up a slight slope onto the sidewalk.  I don't know if I am being paranoid.  Perhaps he is not doing well because he has been cooped inside all winter and he is not getting any exercise,and just staying on his floor because there is no way to sit outside right now. 

This is the kind of thing that gets me very aggravated.  He needs someone to make him exercise and walk every day and medicaid is just not going to pay for that.The cynical side of me tells me that it saves money, people die more quickly if they don't exercise.

picky

It's a Wednesday night, and I just came home from visiting my brother.  I stopped on the way home and went grocery shopping and I'm a little tired.

My brother's nursing home doctor was in the dining room when I got there.  Her name is Dr. Fisher.  She looked like a nice lady.  I asked her how his billi rubin was, of course she didn't know, but at least I got it on her radar screen.

I noticed that he has been picking his skin again.  I am pretty suspicious about this because I read that picking at your skin can be a sign of liver problems.  I guess only time will tell.  Right now, he seems ok.

We actually had a nice conversation.  He had just gone to a current events session, and was eager to talk about the Israeli spy who is in the news and Jesse Jackson Jr and his woes.  I told my brother the story about how I once took Congressman Jackson for an environmental tour of the SE Side of Chicago.  There was a lot of traffic and there was construction, and I was having a difficult time turning left.  Finally he yells, "Turn, woman!".  At the time I asked myself he if talked to his wife like that.  Now she's indicted too. 

My brother liked the story, and then offered how he had met Rahm Emmanuel at the Belmont el station when my brother was still working.  Emmanuel had been campaigning for Congress.

It was a good visit.

Gurgle

I saw my brother yesterday.  I stopped by to take him out for breakfast before I left for an overnight weekend with friends of mine at Starved Rock, an Illinois State Par.  We have been doing this for more than 20 years.  We go with about 10-15 families.  This is the first year we have gone without kids and I was feeling a bit melancholy. 

Truthfully, I really didn't feel like going to see my brother.  I have a cold and my head is stuffed and I was tired, and it would have been better to sleep in, not expose my cold to him, and not go.  But I didn't want to spend my day off doing it (Monday is a holiday), and he looked so happy when I mentioned to him that I would stop off to see him before I left for the weekend, so I went.

It was one of the shorter breakfasts.  The waitress was extremely efficient, and the whole thing from door to door, took about 45 minutes.  No big deal.

My brother mentioned to me that one patient had died (he didn't seem to know him, but it was someone on his floor) and one patient had gone by ambulance to the hospital.  This was the first time he had mentioned something like that since he has been at the new nursing home. It's hard to tell how this effects him because of his autism, he is rarely going to identify any real sadness.

But it hit me kind of hard.  As I dropped him off, I felt depressed that he is stuck inside this building so much, and the except for a few excursions during the year, I am the only person (or my husband) that takes him out of the building.  That's no way to live.  And I also thought about how hard it is to entertain him because he can barely walk, his mobility is so limited, and he can't access so many buildings easily.  That's depressing.

This week I was also informed that his lungs had been checked out and they were clear.  But it is pretty obvious he has a permanent gurgle.  I think that's because his heart is too weak to clear his lungs completely.                                                    

heavy breathing and a surprise

Last Saturday, I noticed that my brother had a cold again, and after just a few steps, he was breathing pretty heavily.  I dropped him back off, resolving to call the nurses station, and then felt better of it, got out of my car, and went back up to the seventh floor, where he lives.  I asked the nurse to listen to his lungs.  She took his oxygen levels and they were pretty good, 99%, which I found pretty strange, given how his breathing had been so laborious. 

Then an odd thing happened. He whispered to her to tell me about his autism.  I had no idea what he was talking about, and then he mentioned he was no longer taking "the happy pills".  He was referring to a pediatric dose of Risperdol.  A doctor had put him on the medication after his roommate of 30 years passed away.  He had suffered with anger management problems all his life and it got really bad.  The Risperdol really helped.  Frankly, I don't know what I would have done without it, I probably couldn't have gotten placement for him anywhere.  It was odd how such a small dose could have such a big effect.  As his heart problems got worse, I worried that the Risperdol was causing an adverse health effect, but all his doctors assured me that it was such a small dose and not to worry.

So I was really surprised to hear that the nursing home psychiatrist had taken him off, and actually pretty angry myself that no on had bothered to tell me.  But it turns out he has been off of it for more than a month, and he doesn't seem that much worse for wear.  I had noticed he was not as mellow and jolly as usual, but I had figured that was because of the holidays.  Both he and my father had gotten very depressed during the holidays since my mother died.  It's going to be interesting to see if there are any mood changes.

I am hoping that his living conditions have changed and that his major sources of frustration at work and living independently are no longer a factor.  But I plan to call the psychiatrist and talk about it tomorrow.  I can't believe there was no consultation with the family on this decision.  I know the nurse assumed that the prior nursing home had been the one to initiate treatment because he must "have been a problem". 

The nurse asked me if I expected to be informed of every change in medication.  Frankly, I don't see why not.  A doctor is supposed to tell you when medication is changed, and since my brother can't handle it, I don't see why I shouldn't be informed so I can advocate for him.  It would be very unlikely I would challenge anything a doctor decided, but I still believe in informed consent.  I plan to ask several of my doctor friends what they think about all this.

I also need to check in on his breathing.  I plan to visit the nursing home a day earlier than I usually do.

new years and emotional distance

I called up my brother on New Years to wish him a happy new years.  My husband, daughter, and I had taken him out for New Years Eve lunch and it had been a pleasant experience.  I really appreciate it when someone else in my family deals with his walker and folds it up and puts it in the car trunk.  I know it's a little deal, but it just feels so luxurious not to have to do it, it becomes much less of a burden to take him out.  It's just psychological.

Anyhow, when he came to the phone he was his usual self.  Barely a hello, just pretty much an ok, thanks for calling and then he hung up.  I remarked to my husband that it would be nice once and a while to actually have a real conversation with him on the phone.  My husband remarked that it some ways it makes it easier to deal with him because he keeps his emotional distance.  I believe this is part of his autism.  By not connecting emotionally, it's easier not to get sucked into his problems.  Actually he never really talks about having any problems at all any more.  He used to talk about his need to live with "regular" people, not people with developmental disabilities.  But now that he is, he doesn't seem to have very many issues at all.  It's just kind of a flatness.  I suppose I am used to it, but as I said, it would be nice if the relationship wasn't just all one way all the time. 

I do get some things out of the relationship and I do love him.  But it's not the same as loving someone without autism.  It's really very bizarre.