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.

the first visit

I went for the first time (not counting check-in) to visit my brother at the new nursing home.   I found him slumped in a chair and drooling, not his usual m.o.  He is back on oxygen and seems to need it, but the physical therapist was able to get him walking a bit, which amazed me.  I think he thinks he is dying.  Maybe he is, who knows.  I got a mobile oxygen tank and took him for a wheelchair tour of the building.  That seemed to get him a little more engaged for a short period of time.

He is on the first floor for the short term folks, and they all take meals in their rooms.  I asked that they start taking him to the second floor for meals with the long term folks and for activities.  There seem to be several people there who are pretty alert but just physically handicapped.  The receptionist was very thoughtful and offered to have some of these folks come down to the first floor and introduce themselves.

Tomorrow I am going to DC for a few days.  My husband will visit my brother at least once.  Transitions are always very difficult for my brother, I am still hoping that he may in the long run get more interaction with folks in the nursing home than in assisted living, where no one was really paying any attention to him at all.

Today I also retrieved his medical records.  They say that his heart is fairly enlarged since the last time he was in the hospital for heart trouble last year.  I am waiting for his personal cardiologist to come visit him and then I plan to talk with him over my brother's long term prognosis.

I am amazed by how well I am compartmentalizing this time around.  I wonder how I can go about doing regular day to day activities while he is in jail at the nursing home.  I think I am beginning to put him out of my thoughts more because otherwise my heart would be constantly breaking. 

Watching a slow death is like watching someone disappear a little bit everyday.  The blog is helping.

nursing home

My brother was released to the nursing home.  I asked for an extra set of orders so I could find out more in detail what the diagnosis is, but of course the nursing home has misplaced them.  I am going to have to go to the hospital to get them. 

The nursing home is physically the nicest one he has been in yet.  It is very clean and very quiet, it doesn't look fully occupied.  In fact, it may be too quiet for my brother, he likes to be around hustle and bustle, even though he doesn't interact that much.  (It's very hard to talk to him because he likes to engage in conversation, but is incapable of keeping up his side of the conversation, it can be exhausting thinking up things to say to him)

These transitions are hard on all of us until the staff gets to know him better.  I have to be pretty pushy so that they understand and address his needs.  So far, the staff seems kindly, unlike the last Medicaid home he was in where they clearly could care less about his well being. 

Already he is not getting the medical care he needs, but I expected that.  He is just not going to get the constant medical oversight you can get in a hospital. 

He arrived in a wheelchair via medicab.  When I walked into the room, he looked quite comfortable in his bed and chowing down on his dinner with gusto.  In the hospital he had been picking at his food. 

Today when I called I couldn't get him on the phone.  He has difficulty reaching for it, we are going to have to work out something with the staff.  About an hour ago, I asked them to have him call me, but so far he hasn't.  (I am off work today for the MLK holiday)

I am spending the morning paying medical bills and getting my deceased father and my brother's tax stuff together for our accountant.  Then I'm dropping my brother's and my daughter's winter jackets off at the cleaners to get their zippers replaced.  And then it's off to the hospital to pick up medical records (I couldn't get them yesterday because it was a Sunday and the office is closed) and most importantly, his medical power of attorney that list me as the poa.

He is complaining that his feet are numb, I am pretty worried about that.  I figure it's either the edema from heart failure or he is also beginning to lose neurological function too (I have suspected that because I often catch him just kind of drifting off into space)

However, I am going to DC tomorrow for work meetings, I am actually kind of looking forward to getting a way for two days, and quite grateful that my husband has agreed to step in as necessary when I am away.

Oh, and one more thing.  I have been noticing lately how interesting my brother's hands are.  He has very long fingers with no meat on them because of a combination of cerebral palsy and lack of eating.  They are a little misshapen, but beautiful in their own way.  I am thinking of taking a photo and posting them on the blog, but I'm not sure how to do that without it being weird for my brother.

And just for blog readers who may think my life is not going too well, that's not true in many ways.  Today I am taking my daughter out to breakfast and am looking forward to it.  I am catching up on a lot of housework today, and I like that too.  I'm also looking forward to an interesting work meeting in DC.  My son is very attentive during these crises and I really appreciate that too.

I think it was Nietzsche who said something like:  "Anything that doesn't kill you makes you stronger".  I think most siblings of people with disabilities would agree that while we would rather not have our relatives and ourselves suffer from disabilities, the experience does give us a certain kind of character and depth!

blood pressure and other issues

My brother was supposed to be released yesterday, and then they said today around 2 pm.  I called around 1:30 to see why they hadn't called me and they said his blood pressure crashed as soon as he tried to stand up.  He had this the last time he was in the hospital so I didn't freak out, at least at first.  But his blood pressure has stayed around 71/55 for at least a couple of hours, so they are fussing with his meds.  The medication that is used for his high heart beat lowers his blood pressure and vice versa, so they try to find a balance.

My father has something similar, but not with the sudden dropping with standing.  This kind of condition takes constant supervision, which you are just not going to get without 24 hour nursing care.  I asked the hospitalist what the long term prognosis is, it sounds like it's pretty unknown, perhaps not more than 2 years.  She suggested seeing how he does in  the next two weeks and if he doesn't improve, to consider palliative care.

There are varying degrees of palliative care so it's unclear what that means..  I am going to have to find a good palliative care doctor, assuming that he needs one.

Meanwhile, yesterday he said that he still wants to live, so I have decided to do whatever I can to make that a reality (except for paddles and a ventilator).  I remember telling my father to be very careful about saying he wanted to die because in the last months of his life, people start to take that very seriously.  I remember telling him that he would have to repeat it for 4-5 days before I would start taking steps.  That seemed to work.  I am going to take the same approach with my brother.  Right now, we're not there.  It's just that it's so hard to get in his head and figure out what is really going on and what he really wants,   And right now, he is really pretty out of it.   We were watching one of those cook off challenges on the Food Network, and I got called away by the doctor right when they were announcing the winner. When I came back in the room, I asked him who won and he had no idea.

I had no idea when I started this blog that things would get so serious.  However, I think it's really helping me to write this all down, and it certainly is sparing my friends from having to hear the same old anxieties over and over like a broken record!  I highly recommend doing a blog to my sibling network friends.  I think you can just use it as an easy way of keeping a journal, you can set the settings so that no one sees it if you like, and you can also control who can see if if you want to.   I have chosen to let anyone see  and comment, but only let people who ask to write their own postings.  So far, no one has chosen to do that, and that's ok with me too.  Mainly this if for me.

Nothingness and its calming effect

In the last three years or so, my brother has started to sit for long periods, sometimes in the dark.  He was watching some TV in his room in assisted living, but when he is in the hospital, he may read theSun-Times in the morning, but then do nothing at all for the rest of the day unless staff noodges him.

Yesterday, I asked him what he thinks about when he is just sitting there.  He told me nothing.  I asked him why and he said because it is calming.  I thought this was pretty interesting, and the reply probably reflects his autism. It bothers people to see him doing and thinking nothing.  It has bothered me a lot.  But now that I know how he feels about it, I am going to stop nagging him about it.  It still makes me feel bad, I keep on trying to remind myself that his consciousness (not sure this is the right word to describe it) is different than mine.  His brain may not work like most of us, but that's the way it is, one way of living can coexist with another.  I am glad I don't have autism, but who's to say which is better?  You never really see him happy, but is that what the human condition is all about?  Still this makes me very sad that he has missed a lot of the trials and tribulations of human life.  I should add that some of this turning to nothingness seems to a slowing of his mind that matches the degeneration in his body.

I am pretty tired, feeling some grief, and I'm going to bed. Tomorrow I'm going to write about the brief conversation I had with him about life and death.  I am assuming that I am feeling sad because I am anxious about transferring him to a new living environment.  I hope it works out for him and for me.

hospital stuff

My brother's heart and breathingg numbers are a bit better so they are already talking about letting him out of the hospital.  It's very hard for me to believe because he is coughing more than he was when I originally brought him in.  My prediction is that he will be back in the hospital pretty soon.  That's one of the reasons I have asked that he go to a nursing home for at least a couple of weeks to make sure his meds are well managed.  My guess is that they are going to have to be constantly tweaked, and if that's the case, he will no longer be able to live in assisted living. I feel very badly for him.  I have not shared my view on this with him, I don't want to get him depressed unnecessarily, in case I am wrong.  This has been very hard.

a safe place to be

One of the siblings on the sibs network list serve wrote me and mentioned that she is afraid to write because she would be too negative.  I wrote back that that's one of the reasons I started this blog, to create a safe place to be honest about our feelings where no one will judge because we have all been through it.  Then I realized that I never had articulated that so I decided to include it in a post.

some improvement

My brother has improved a bit.  I went to see him last night after they drained his lung of 1 1/2 liters of fluid (they also managed to collapse his lung, but they fixed that too).  His vitals were pretty scary, his heart rate was about 158 and from time to time his blood pressure would fall to 75/45.

But his vitals are much better today and he is sitting in a chair, and I think even walked a few steps.  His voice is really strong and he looks pretty good.  The only problem is that his lungs are refilling with fluid and it looks like he may be developing a temperature.  So while I am feeling ok, I don't think he's out of the woods yet.  But it's better than watching him crash like last night.  (They sent me home telling me the next 24 hours were crucial.)

Life goes on.  I have a 3 hour (one-way) work trip I have to do on Friday that I may have to cancel.  5 of my co-workers and the office we are visiting are all on notice that the trip may be cancelled.  Next week, I am supposed to go to Washington, DC, for work.  I'm wondering if that's going to happen.  The 3 day weekend we had planned with 10 other families at a State park for this weekend was cancelled for my family.  I had to cancel the same trip last year because both my brother and father were in the hospital.  (My father passed away about 3 weeks later).  The vacation disruption bothers me more than the work disruption, at least I have my priorities straight!

It's late.  I'm going to sign off and have dinner. 

today was a bad day

My brother had a new diagnosis, congestive heart failure.  He had 1 1/2 liters of liquid drained from his right lung, and then it collapsed.  His heart rate is at 158, and his blood pressure has dropped at some times to 75/40.

It has been difficult talking to some of the hospital doctors about pallative care.  They are so life focused.  I've been trying to explain to them what my brother's future will be in a nursing home where he will be neglected because he is autistic and can't advocate for himself at all.  I am concerned that he won't be ambulatory, wear a diaper, and sit in a chair staring into space all day long, because that's what he has already started to do at his assisted living residence.

When he was admitted I asked that I be asked for approval for all agressive invasive procedures.  That's pretty hard to define on the edges.  I agreed to draining his lung, and putting in the other drain once his lung collapsed because I wanted him to be comfortable and I figured that even if he ends up in a nursing home, there's a slight chance he might get better enough to go home (but I am really doubtful.)  The day time hospitalist is certified in palliative care, and I think she gets it.  I even "made" her cry when I started crying.  She said that if he starts crashing she won't put him in intensive care, and she won't push air into his lungs.  I hope I have made the right decision.  I am really torn.

hospital

When I showed up today to find out how Barry was, he said terrible (he never complains) and said he was having trouble moving his legs.  I immediately took him to the ER and he has pneumonia and has been admitted again.  At least I know someone is watching him now.

the aging disabled

I woke up today, apprehensive about what I'm going to find when I go visit my brother.  But I checked into the blog and I was delighted to find a comment from mjr,  who has a brother with downs syndrome.  I hope she decides to post blogs on a regular basis.  I have discovered that to post your own piece, rather than respond to one of mine, is that you have to sign into blogger.com.  After that, I'm not sure what you do when you are not the administrator, since I have never done this before.

MJR's comments got me thinking about the convergence of care for the aging developmentally disabled population with the general aging population.  At least in my brother's case, in some ways there are more resources available as my brother's medical situation has deteriorated.  I think that's because he has pervasive disability syndrome (many symptoms with no specific diagnosis) and cerebral palsy.  Up until recently, he was able to live in a Support Living Arrangement (in an apartment with a part time staff that helped with budgeting, paying bills, etc.,) and even work.  He has uneven cognitive ability, with some things he is in the "normal" level, with others he is not.  His IQ, last tested fairly recently, was 80, which led the state to categorize him as not mentally retarded because they want to save money.  In some ways, the cerebral palsy has held him back more than his cognitive issues.  On the other hand he has Asperger's Syndrome and he was irritable and hard to get along with until we got him on a pediatric dose of Risperdol (thanks to our wonderful case manager), which had made a huge difference.  He spends long portions of his day, just sitting in a chair and not interacting with anyone.

I digress.  My brother is 62 but is now living in assisted living with the 85+ crowd.   The doctors have explained that when you have cerebral palsy, you start off in life with a lower level of muscular strength, so when you age, you have less muscle than someone should for your age.  In one leg, my brother is all bone, there is hardly any tissue left at all.  His weakness became apparent about 8 years ago, when he started to have difficulty getting out of his chair.  He now is on a walker.  I try to get him physical therapy periodically to strengthen him up because it really helps.  The problem is that his insurance will only pay for so much and that's it.  He really should have it at least twice a week for the rest of his life.  We try to get him to exercise, but he only does it if you stand over him.  I try to take him on a walk 2-3 times a week.  His assistants are supposed to do that too, but they are not good at coaxing him into doing it.  Medicaid gives him an assistant twice a week to shave him and help him bathe (personal hygiene is a real issue).

What I'm trying to say is that the problems I have describes so far:  eating, personal hygiene, exercise, loneliness (my brother has no friends), boredom, are typical of the infirm elderly.  There are many people in the assisted living facility that have had strokes and look like they may have some similar issues.  I tell myself that everyone has to deal with these issues in their families, it just that my concern is the fact that my brother is only 62 and that I may have to live with them for a very, very long time.  (although he has aged so, so rapidly that may be unlikely, who knows?)

Spoke too soon today

I spoke too soon today, it turns out that when I went to check in on my brother this morning to see how he was feeling, he looked really lousy.  I got him to drink a pint of juice and do a little walking, but I am getting really discouraged.  Whether or not he ends up in the hospital from this cold which can very likely turn into pneumonia, I am confronting the fact that at some point, I am going to get just too fried from all this and decide to permanently put him in a nursing home, because that's all the State of Illinois has available for supervised care.  I am not willing to give up huge portions of my life to take care of him, taking care of him is a full time job these days.   I am not willing to stop working.   There are no other relatives to take turns.  Leaving the house is going to mean getting respite care.  Furthermore, he is going to be way too lonely, although he is autistic, he likes to be around people all the time, and we're just not home that much. 

the fiddle

One of the things I decided to do for myself was to learn how to play the fiddle.  I always wanted to do rock/jazz violin, and I think you learn how to play the fiddle instead of the violin to learn how to do that.  Actually the fiddle and the violin are the same instrument, you just play them a little differently.

It's difficult to "find time" to practice, but I think that would be the case whether I was caretaking or not.  What is holding me back is my sound is really bad, which is common for beginning players.

I went to my lesson this morning, and it really showed that I didn't practice too much this week.  I think it's kind of interesting that you need to build up "brain memory"  between your eyes, brain, and hands in order to find the right positions for fingering because there are no frets on a violin.  I'm also relearning how to read music, I haven't done that since I was 11 or so

Practice, practice, practice!  Now I'm off to see my brother to see if my husband was really right that he was feeling better.  I need to see if he's good enough to take him our for a smoothie or juice drink, he really likes it when I get him out of his building.  The problem is that it's super cold today and I don't want to make his cold worse.  Tonight we are going out to a performance of Second City for my daughter's high school.  Life goes on, one way or another.

Ciao!

today was not so bad

Today, my husband was nice enough to visit my brother twice, once before he went to work, and one after work.  He thinks the antibiotics we got for him last night seem to be working and he seems better.  And I bought some decongestants for my husband and myself and we are feeling better too, so we are feeling better too. 

I've been through this enough now that even when I was tired and bummed out last night, I also knew that our path is bumpy, so there was part of me that knew the feelings were not going to last forever.  That's a lot  better then how I felt when my brother's medical crisis started about 7 years ago.  But that's another story for another time.

I am feeling pretty good that two complete strangers and two friends, have asked to have access to the blog.  I have tried to give you access to write your own posts, so let me know if you can't.

cold or something worse?

Today our case manager called to let me know what happened when she took my brother to the eye doctor.  He has a pretty bad cataract in one eye and has to have it removed.  That raises all sorts of questions about how to keep him from rubbing his eyes when they are healing.  I am concerned there will be complications because of his heart condition.

The doctor also thinks he has bronchitis, so we are taking him to the doctor tonight.  Both my husband and I have colds, and of course, when I called last night to see if he had caught it from us, he said no.  Any chest cold usually turns into pneumonia and often into a hospital stay, and then when he lies around in the hospital, he needs physical therapy and ends up temporarily in a nursing home.  This whole system is so stupid, if the State would pay for a 24/7 supervised home that was appropriate for him, the State would save a lot of money.

I am really tired of all this and there is really no one else to do this.   I am concerned that I am losing the best years of the life I have left.  I know this sounds a bit dramatic, and very self-centered, but I'm pretty down.  I am really glad I started this blog/diary.  Just writing about it makes me feel better.  At some point, I am going to reach the limit and put him in a nursing home permanently, because there is no where else to put him unless I quit my job and have him move into my house,which I definitely don't want to do.  That's like giving him a death sentence, unless the family is there daily, there will take lousy care and he'll probably die of something that is preventable.

report from our case manager

We have a wonderful case manager, who mainly helps our on applying for government assistance and some attention to medical care.  She was our case manager when my brother lived in a Supported Living Arrangement and then her services were free.  As my brother's physical situation deteriorated, he could no longer live on his own, and the State of Illinois was aboslutely useless in finding him a place to live.  Bascially what he really needs is 24/7 supervision, meals prepared, and general ego support.  It's not easy to spend time with him because he is mildly autistic and can't keep up his side of a conversation very long, and of course not, he is very weak and can't go places very easily.  Anyhow, our case manager is great, but her services are limited because she supports several group homes and living situations besides my brother's and I have to pay for the services myself.  I am really happy that my parents left me enough funds, at least for right now, to pay for all of this.  I thought it would be interesting to post the email that she just sent me today, I took out any references to real names:

{Your brother} never answers his phone. I went over to NSH on Wednesday and met with Barry. He was a little ornery that I came unexpected although I had left a message on his voice mail that I was coming. Barry signed the legal consents I needed for the file for 2011. We visited with [another tenant who used to live in the same Supported Living Arrangement. Your brother's assistant from the Department of Aging (she's new, but so far I, the sister, like her) arrived late due to a delay with public transportation.  I showed her where the antibiotic ointment was for your brother's abrasions.  Your brother would not apply it since he said he needed some vaseline to put on first. The assistant cleaned your brother's hearing aid and then shaved him. She did a good job. We aired out his bedroom because it stank. I showed the assistant where the big blue plastic cups were. I filled up a cup of water and asked her to have your brother finish it. I had to leave, but Gloria said she would do your brother's laundry and remember to shut the window. I took your brother to get his orthotics today. I gave him some vaseline. We went for a smoothie. He was looking very tired. I could not get him to finish his water or smoothie. I will take him to Myers Center for the Eye on Thursday for his appointment. I offered to take him for a haircut after the appointment but he said that would not be necessary ( he looks a little scruffy). I will bring air fresheners and spray to keep in his apartment.I hope you had a nice vacation. Your brother was fine. Happy New Year!

So you can see my brother can easily take over your life.  But like my friend said, there are people out there willing to help. And of course, I have the funds to assist him.  I shudder to think what it would be like if I didn't.

January 2, 2011

So on Sunday, I was able to do a little exercise at my health club and went with a friend for coffee afterwards.  Wouldn't you know it but I got a phone call from my husband who was visiting my brother.  He was slightly panicked because my brother had wet his bed and he didn't know what to do about it because my brother lives in an assisted living facility that only makes the beds on Monday-Friday.  So I told him to check in with the front desk and I was just so happy that this didn't happen on my shift.  But it still stressed me out.

My brother is losing his muscular controls and one of the things that is going is his ability to hold urine.  Another problem is that he now walks so slowly he can't get to the bathroom on time.  So he tries to refrain from drinking fluids, which dehydrates and pushes him into afibrillation and the condition is life-threatening.  The family and his case manager is trying to pressure him to wear diapers so that he can keep his fluid intake up but he is not cooperating.  It's very frustrating.  He will tell you he will drink and that he will walk (even if it's inside the buildindg) but he won't do it unless you stand over him.  I have decided I can't go over there everyday and work and take care of my own family so I don't know what his future is going to look like.  I have pointed out to him that if he lands in a nursing home because he either can't control his urine or he can't walk, that the nursing home will make him wear diapers anyhow.  So far, I am not getting cooperation from him. 

Sometimes, I think a nursing home would make my life easier, but then I remember that they will take very bad care of him unless you show up a lot and let them know you are watching.  And let's not forget about the 6 months when his COBRA private insurance runs out (hard to believe he was working until last year) and medicare doesn't start.  He has a wierd insurance thing right now where he has private insurance and medicaid, not medicare.

Ok, I have gotten some of the main issues off my chest.  Maybe now I can start lightening up. 

Do people know about the list serve that exists for siblings of people with developmental disabilities?  I have been "stalking" this list serve for several years, and finally have started meeting a few people in real life.  It's really quite wonderful to meet people where you don't have to explain anything, people "get it".  And you don't even have to spend all your time talking about your sib(s)!

Beginnings

I'm starting this blog for therapuetic reasons.  I have a brother, 62, who has developmental disabilities and who has become very high maintenance, especially as both my parents have now passed away.  I find myself boring my friends with all my trials and tribulations, so I thought I would just write them down. 

Also, I have a friend from high school who has an autistic child who has a web page.  He wrote something in it that really helped me; he commented that after losing his wife, his home, and his job due to the issues that develop when you have a severely disabled person in your family, that you go through various stages of adjustment.  One thing he said that really struck me is at some point, you realize that there are people out there who are willing to help you, you don't have to do this totally alone.

But loneliness and isolation are a huge factor.  Caretaking breeds co-dependency for everyone.  In the long run, when the ambulances are called, when the acting out causes problems, I am the sole person responsbile.  It is overwhelming and not many people understand the experience.

But there are people who do.  I have joined a list serve for siblings with disabilities and have met a few people (in person) who really get it.  It's really nice to not have to explain anything and for someone to totally understand what you are going through.

The purpose of this blog is to get the experience down in writing.  Maybe there are a few people out there who will find it interesting.