back in thte hospital

Two Thursdays ago, I was woken up by a phone call from the nursing home, telling me that my brother had thrown up three times and that they were sending him to the hospital.  I asked that he be sent to the hospital that is  one, that is about five more minutes away, but they told me they had called 911 instead of an ambulance service and that it was too late.  I don't know how many times I have asked that he not be sent to the hospital that is located across the street from the nursing home because the care is second rate.

When I got there he looked ok, not great, but ok.  They were giving him iv fluids and his very low blood pressure seemed to be increasing so I went to work. they told me he had pneumonia, and I asked why they thought that.  They said that there was a spot on his lung, large enough to make them believe that the pneuomina had come first, not the vomiting.  I remarked that he has had a spot on his lung for several year,,  but the doctor did not seem interested.  I was pretty tired so I left work t early and got back to the hospital in the middle of the afternoon, more because it would mean that I wouldn't have to go in the evening and that I could just go home and crash.

When I got to his floor, I saw all the staff practicing for caring for potential patients with Ebola.  When I asked them if that was what they were discussing (they were all in the hall talking in hushed tones), they denied it, but when I mentioned I had heard them discussing Ebola, then they admitted it.

My brother was in a cardiac care unit but not hooked up to the monitors.  Since residents had removed his oxygen, I asked for an oxygen reading (it was good), and then I asked for a blood pressure reading.  It was really low, around 78/44, life threatening.  That caused some commotion and phone calls.

I went home and felt pretty uneasy so came back later in the night with my husband.  My brother looked pretty bad.  His blood pressure was prety low, in the 90s, but his heart rate was dangerously high, around 130.  They were monkeying around with his medication ,titrating between treating the high heart rate and the low blood pressure.  I was pretty worried, and would not have been surprised if I had gotten a call in the night telling me that they were going to transfer him to the ICU.

But he got better, and his numbers were pretty good by the morning.  He stayed in the hospital another day and was released on Saturday.

However, the hopsitalist told me that my brother probably did not have pneumonia.  They sent him for yet another cat scan that was inconclusive.  The cat scan was inconlusive.  The good news was that no mass (cancer) was detected, that he needs to get another one in a month, and was seems more likely now, a biopsy if the new cat scan continues to be inconclusive.

Of course this raises all sorts of issues I really don't want to think about.  What if it is cancer?  Do I give him chemo?  What does that do to his quality of life? Will will it already do to his already weak condition?  Will he start throwing up and end up with heart issues again.  Ug, just thinking about it is stressing me out.  I will have to approach this one day at a time.

Meanwhile, my brother got back to the nursing home, on a Saturday.  They wouldn't even discuss taking him out of a wheelchair until physical therapy looked at him, which didn't really happen until Tuesday.  So I went to the nursing home Tuesday night, took him for a walk, and then asked the night head nurse why he was still in a wheel chair.  She told me that he didn't have to be because there weren't any orders to that effect, so I thought the issues was over.

The next day, I found out that he had only been to physical therapy for 15 minutes, and that they were still confining him.  I called the head nurse and made a stink.  She said she would talk to the PT folks.  Fortutnately, I had one of the 3 month CARE meetings the following day, and after a lot more arguing, got the nursing home to agree to let him use his walker with the understanding that he would be accompanied when he wanted to move until he "got stronger".  Meanwhile, everyday that he doesn't walk around enough, he gets weaker.

I am taking him out tomorrow for breakfast and I will make sure he walks as much as he can.

sweet phone message

Last Wednesday, my husband offered to visit my brother so I wouldn't have to go that night.  It was a good thing too because I have been managing several hot issues/crises at work and I was really, really tired when I got home.  In fact, I didn't even go work out, which I usually do every day.

That afternoon I got a wonderful phone message from my brother.  My husband always has him call me on my husband's cell phone, and usually I am too busy to answer or I don't even it hear it ring because it is sitting in my purse, locked in a drawer.

But that day, I heard the message is little later.  My brother was ebullient, telling me what a great day it was and how wonderful he felt, and that everything was "just wonderful".  It made me feel really good about finding him a decent nursing home.  I remembered how hard I struggled to create condidtions so that he could live independently, and then I reflected how living in a nursing home provides him with the social interaction he so rarely had in his earlier life, especially after he got to ill to work.  He truly seems happier than I have seen him in a very, very long time.  Although he often talks about how most of the patients are just "so out of it", I think he gets a lot out of interacting with the staff on a daily basis.  It is a blessing that his mental disabilities allow him to not suffer from the drudgery and sadness of living in a nursing home.

an interview

Yesterday, I was having the usual Saturday morning breakfast with my brother. He was in a very good mood and somewhat talkative.  We were discussing the idea of whether he should assume a leadership role in the nursing home's current events discussion group.  (Apparently most of the people who attend the group fall asleep in the middle of it.)  While we were discussing it, he mentioned another patient who goes around and interviews other patients, I"m not sure to what end.

When he interviewed my brother, he asked him when did he have his stroke.  There was silence on my end.  Then I asked my brother, "what did you say"?  (It's true that my brother has had a stroke, but he fully recovered from it and it's not the reason he is in a nursing home.)  He replied that he just avoided answering the question, which I thought was pretty smart.

still choking on food

My brother was a little aggravated this Saturday when I took him out to breakfast with my daughter.  He let us know he had had an "accident", in other words, he had had diarrhea.  He also choked on his food a bit, this is the third Saturday in a row.

I called the nursing home the next day to see if he still had diarrhea.  They said no.  I am watching this carefully because if he has intestinal problems and throws up, he can get pneumonia caused by not clearing his lungs.  Also, he can get dehydrated pretty easily, which throws him into bad afib.

So far, so good, though.

We had an interesting exchange.  Somehow we were talking about someone who was a "lefty" and my daugther asked him what that meant to him.  He thought for a minute, and then said, "one word:  freedom".

My brother's intellectual abilities always amaze me.  He could throw out that abstract idea, but when asked to further develop what he was trying to say, he was completely stalled, he could not elaborate.

The brain is amazing part of the human body.

a nice summer breakfast

I took my brother out for breakfast today and drove a bit longer so we could go to a greasy spoon that has outside seating.  It was lovely, rather relaxing.  He tried to order a bagel and I wouldn't let him, because of fear of choking.  He did start to choke on something else, anyway, but it was pretty minor.

It turns out part of the problem with his hearing aids are the batteries.  So now I have a battery tester, and I tested a sample, and they seemed ok.   I hope this continues to be the case.

I would like to take him outside a bit more in the summer, to take advantage of the weather, but it's hard to come up with where to take him because of his lack of mobility.  He can't walk more than a block without getting pretty tired.

I am not telling him about an upcoming trip to Colorado for fear he will get sick, so I am only going to tell him a few days in advance.

choking

Yesterday, my husband and I took my brother out for breakfast.  During the  summer I try to take him to a diner/greasy spoon for breakfast because it has outside seating, and I figure it's a treat for him to be able to go outside in an environment that is not the nursing home.

He ordered a bagel (he loves bagels), and I didn't make a fuss because it had been a long while since he had choked on one.

Well, he choked not once, but twice.  The second time a huge piece of bagel came up.  I ended up by removing the bagel from him with out too much protest.

I used to think he would probably die from pneumonia.  Now I am beginning to think it will be by choking when no one is present to help him.

I have gotten to the point where I don't obsess about this kind of thing anymore.  I can't be in his presence 24/7, so I (and he) have to live with it,.

more on the hearing aid and also wedding plans

My son is getting married this weekend, so I have been a bit preoccupied.  This is why the hearing aid issues are all the more aggravating.  Not only is the new hearing aid not working, neither is the old one.  In a panic, I called the new audiologist and pleaded with him to get the replacement hearing aid, which is supposed to sit over my brother's ear, not in his ear, expedited.  It's a good thing I called, it suddenly appeared yesterday.  Who knows how long it would have taken without intervention.

While waiting for the new hearing aid replacement, I took his old one in and paid $450 to send his hearing aid overnight to the factory to get the receiver replaced.  I am figuring that it's important to have two working so that when one breaks down, he has another.  My brother gets very isolated when he can't hear.

But he is very excited about the upcoming wedding.  My son and his fiance have given him a speaking role during the service.  He is supposed to give a 3 sentence blessing.  I hope he knows when to stop!


Meanwhile, my son asked my brother what he wanted to be called.  "just don't call me late to dinner".  He is a riot sometimes.

I am hoping that the nursing home comes through and gets him shaved, showered, and late in the day so that he is clean for the ceremony.  I am also hoping that the person that I hired to pick him up, deliver him to the event, and keep an eye on him, as well as drop him off at night, also comes through.  There was a time when I seriously thought about not inviting him to the event because I didn't want the responsibility of having to take care of him that day.  I am glad that I changed my mind.

More to come next week!

skipping meals

Today at breakfast, my brother informed he is skipping meals because he thinks the food the nursing home provides is "not healthy".  So I asked him for examples.  The first thing he mentioned was eggs and orchestral, which I thought was kind of strange because he was eating eggs at that very moment.  Then he mentioned pasta alfredo.

My brother has been fixating on what kind of food he can and can't eat for quite a while.  He thinks vegetables and fruit give him the runs, and he won't eat cheese at all.  At least most of the time it's the case unless he thinks otherwise on that particular day.

So my reply was that he had two choices:  either eat what they provided for him or ask for one of the substitues that they always provide.  He told me that it was only peanut butter and jelly which I know is not the case.  I mentioned that the critical element was portion, and since they control portions at the nursing home, I thought he could eat anything he wanted, and that he should not be skipping meals.

A budding eating disorder is not something I particularly want to deal with.  It has come and gone in the past 10 years.  I am going to have to track this.

back from Italy 9and more on the hearing iad)

I'm back from Italy. I came back on a Saturday and went to go visit my brother on Sunday.  I was pretty jet lagged but figured I needed to go see him. I glad he did. It turns out his hearing aid hadn't been working for 3 days.

He just got a new hearing aid, and it was ordered without my permission, although I did ask for an audiologist to come see him.  It was an issue.   Medicaid will only pay for the hearing aid once every 5 years and it is expensive.   It breaks down a lot because my brother physically can't clean it, his ears are more waxy than most people, and then the hearing aid doesn't work.  The audiologist that the nursing home selected is at least an hour away from my house.  The audiologist only turns up once every 6 weeks, so theoretically, by brother could go without hearing for almost 8-9 weeks.

The nursing home social worker and head nurse weren't very sympathetic.  They said they never deal with these issues because most residents don't have involved relatives and that they are in pretty bad physical shape and can't complain because they are not able to physically.

I called up the audiologist, who turned out to be probably a nice guy.  He said that he comes into the area more frequently and would be willing to stop by and pick up the device for repair if needed.

Meanwhile, at the CARE meeting, I asked the nursing home to start cleaning the hearing aid on a daily basis, and I was outright turned down, that the devices would too costly and easy to break, they didn't want the liability!  This is driving me up the wall, and of course, I wonder once more, what is going to happen to my brother if I suddenly am not able to make sure he is taken care of (right now, I clean his hearing aid whenever I see him, usually twice a week.)

There is always something to be stressed out about when it comes to my brother.

shaky

My husband and I are planning on going to Italy from April 24-May 4.  My son was in town recently and let it drop to my brother about the trip.  Since my brother has exhibited a tendency to get sick when I am on vacation, I really don't like to let him know until right before so he doesn't get all stressed out.

Oh well, what is done is done.  Meanwhile, I took him out to breakfast today and his balance was off.  I stupidly let him drink 3 cups of coffee, and then realized that his balance might be off because he is dehydrated.

I mentioned to him that he looked a little shaky and that I thought he might be dehydrated.  He protested when I took him back to the nursing home when I said that I wanted to talk to the nurse about it.  While I was looking for her, he was in his room with the door closed.  I never did find the nurse, but he told me he had just drunk two glasses of water.  I never know if I can trust him about this.  It sounded real though.  I did find a CNT and asked her to tell the nurse.  She said she would have it put in his chart.

As soon as I finish writing this blog, I am going to call the nurses station and make sure they know.

fantastic

My husband and I took my brother out for breakfast this Saturday and when we asked him how he was doing, he said " fantastic".  This is a step up from "lovely", which is what he says when everything is ok.  In fact, I don't think I have ever heard him say this before.  When we asked him why, he said "because everything is slipping into place", and then he mentioned that he had just finished physical therapy.

I am figuring that the physical therapy has not only helped him physically but mentally as well.  It's another one to two individuals who are giving him energy and probably positive reinforcement.

This makes me a bit sad that he can't have physical therapy all the time.  (Actually, I wouldn't mind physical therapy once a week, too!).  He is certainly stronger when he gets it.

I find this even more amazing considering he got of intensive care two weeks ago.

all better, and a movie review

My brother is amazing.  One week he is in the ICU, within two weeks, he's chipper than ever!

I took him out for breakfast yesterday (a Saturday) and hew as unusually talkative.  I had no problem making conversation with him at all.  We talked about the Ukraine, the Oscars, etc.  He was a pleasure to be with.

I cannot figure out what makes him tick. If I could turn on the switch at will, I would, of course.

On the other hand, I saw the movie, "Nebraska" last night.  The main character, the old man, who is losing his faculties, really reminded me of my brother.  The key aspect was  movie characters asking him a question and it being clear that he was in another world and couldn't connect without repeated questioning.  This is so like my brother most of the time.  He is somewhere else in his head, who knows where.  then there ws the irrationality of some of the old man's beliefs.  It wasn't the irrationality that was the same it was the inability to just understand certain concepts.

The other thing that struck me about the movie were the reactions of the old man's caretakers.  His wife was really angry, I identified more with the son.  The transporting, the helping the old man walk, the picking him up after falling, etc.  I was really struck by how mental illness/mental imparity (and in the movie's case, alchoholism) can so impair a family.  The redeeming theme is the story of "Nebraska" was the love,c are, and concern that the son had for his father, despite his serious impairments.  Any caretaker should go see this film.

back from the hospital

My brother got back from the hospital yesterday.  He was supposed to be released the day before but they let him just sit there and didn't release him in time for the nursing home to take him.  I don't blame the nursing home, I blame the hospital.

Meanwhile, the doctor told me I could take him out for breakfast, so that's exactly what my husband and I did.  I was a bit sorry.  My brother was pretty weak and has a bad cough.  I would not be surprised if he ends up back in the hospital.  He obviously needs physical therapy, but the hospital physical therapy team didn't think so.

On Monday, I will have to call and see if I can get the nursing home to order him some.  Otherwise, Meidcaid won't pay, and I will do private pay myself.

The hospital orders said to take him to see a pulmonary doctor within 3-4 days, but the doctor is "too busy" to see him for another two weeks.  Go figure.  This all is exactly what is wrong with our health care delivery system in this country.

Despite these setbacks, my brother was in very good spiritis.

back to the icu

What a strange weekend.  Yesterday I woke up to find the town I live in carpeted in snow, but I decided to go visit my brother anyway.  It was kind of a hairy drive, because it was still snowing and they couldn't keep up with plowing the streets.  But I got there, and I told him I thought I could take him out, but he was going to have to let me help him get from the door to the car.  He declined, so we sat in the nursing home's cafe and had coffee.  It was pleasant, he told me that he actually enjoyed living in the nursing home, that it was quiet in the lobby (the patients don't seem to use it) and he enjoyed reading the newspaper in the morning.  So I took heart in that, and left to do other things the rest of the day.

This morning, Sunday, I was woken up by the nursing home, who told me that he threw up during the night and had fallen as well.  I decided I better go over and check it out.  When I got there, he was slurring his words and looked like half his face had fallen.  This has happened before, and it's hard to tell whether it's a TIA or something worse.  So I went and got the nurse and told them that they needed to worry about hydration.  They gave him some kind of a screening test for strokes and said he was ok, and that the doctor was ordering some tests. He was barely responsive.   I sat around for about half an hour, and then the CNT came in and took his blood pressure.  It was 83/60, so I asked that he be sent to the hospital.  I figured he just needed to be hydrated, but that if I sat around and waited for the nursing home to get going, he could start really crashing.

By the time the ambulance came, he was in the 60/50 range, so they started moving post haste.  They started iv fluids and he immediately appeared to start stabilizing, so I asked that they take him to the hospital that is about 10 minutes away, instead of the bad one he had been in last May when the same thing happened and I was out of town.  They agreed.

I was so surprised when the emergency room doctor came into the room and told me that it was much worse than I thought.  He had serious pneumonia, and his blood pressure was dangerously low, and he also wasn't passing urine.  They started asking me for living wills and whether or not to resuscitate him.  After many worried looks from the staff, a catheter, and lots more fluids, his blood pressure came up and he started looking better.  His blood pressure was still fluctuating, so they still wanted him up in ICU.

I was pretty calm during most of this (except for the discussion on DNRs) because I think this is the fourth time we have gone through this.  I am pretty hopeful that he is going to be ok, but I also know he could crash at any time.

I am glad I was in town this time around.  Also, I have realized that I have to put more thought into this living will stuff.  As anybody knows who has been through this, these decisions are pretty case specific and you have to base the decisions on a lot of unknowns, like what are the long term results going to be because of extraordinary intervention:  for instance, is the patient going to end up a vegetable, will they be in pain, etc.

I find it pretty interesting to realize that I literally have saved my brother's life several times now, and he has survived because of very expensive, modern medicine, all being paid by the taxpayers.  Mainly what I think about is how strong the will to live is, and I will always respect my brother for his will to live.

I am going to sign off now before I start crying.

past the holiday blues

My husband has been more active in helping out with my brother lately, which has been very helpful.  He visited with him on Wednesday without me, and I was happy about that because the weather was pretty cold and it's hard to go at night, you just want to come home.

Today on Saturday, he went with me for breakfast.  We had an ok time, my brother was in a good mood, despite the fact we were 20 minutes late because it had snowed and we had to shovel snow at our house.  II did call to let him know, and it sounds like the staff must have told him this time around.  I think getting past the holidays really helps.

I was kind of startled when he started talking about the 9 patients who died at the nursing home between June and September of this year.  I didn't realize it was so many.  It mus be very difficult to live in those circumstances.  He told me that he was beginning to put on weight.  I am going to have to call the nurse practitioner on Monday and remind him to keep an eye on my brother's fluid retention.  I asked my brother to do the same, but you can't assume it's going to get done.

This weekend the weather is supposed to get so cold they are talking about closing the Federal building where I work.  Meanwhile, the staff is going to have to travel to get to their jobs in this weather or sleep over.  It's times like these that you really appreciate them.

At the restaurant there was a slight built in ramp going over the curb into the parking lot that was a little icy, and if my husband and I hadn't been right there to catch my brother he would have slipped and fallen.

But he didn't, and all was well.

back from vacation

I just came back from a 9 day vacation in California.  I went with my husband and daughter, and we visited my son, his fiance, as well as a bunch of friends from our college days.  It was relaxing and fun.  It was very good to get away from my brother for a while, to not have any responsibilities.  I called him once when we were gone and he was fine.

This is a lot different from when he was at the other nursing homes, when I always worried that he could get a cold, start vomiting, and die from bad medical care, which has almost happened several times.  It is such a relief to be able to go away for a few days and not feel guilty about it.

My brother was in good spirits when my husband and I went to visit him last Sunday.  We took him out for an afternoon snack and coffee.  I think his mood is better because the holidays are over.

We discussed a bit what happened at the nursing home when the weather got bad.  It got down to about 20-25 degrees below zero with a wind chill of about 40 when we were out of town.  I asked him if the nursing home was short staffed during this period and he said that most of the staff showed up, that only a few actually slept over to avoid the danger of commuting.  All three of us expressed appreciation for these folks.  Many of the staff are low income, but dedicated to the clients, and I think it's very important not to take that for granted.  I always make a point of thanking any staff that I see in the elevator, etc., for working at the nursing home and taking care of those who can't take care of themselves.  These are very difficult jobs and it is a shame and even unfair that the wages are usually so low.