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

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

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

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

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

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

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

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

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

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

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

adjusting

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

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

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

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

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

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

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

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

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

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

transition

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

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

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

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

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

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

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

less bills

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

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

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

moving to the second floor

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

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

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

things are getting a little easier

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

moving into extended care

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

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

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

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

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

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