It's been a little while since I last posted. And a LOT has taken place. While visiting our daughter in college (3 hrs away from home), my husband fell down 13 cement stairs and ended up shattering his shoulder and his elbow. He endured 9 hrs of surgery, was on a morphine pump for 36 hrs afterwards, then placed in a soft cast and the pump removed... he has pins, rods and plates in both areas and the surgeon said he might not have use of the lower arm from the elbow down - due to the severity of the break - lots of very small bones.

Initially, the physical medicine and rehab doctors, PT and OT recommended him for inpatient rehab (I didn't even know about this - I was thinking skilled nursing facility). Two days later, I was informed by the social worker handling our case to be transferred to an inpatient rehab hospital was denied because the PT changed her mind and said he could be released to go home. I'd met with all of them about getting him into a transition placement (skilled nursing or rehab) due to his impulsivity - gets up fast, moves fast, won't listen to instructions or follow basic safety precautions (denial at being as bad as he is)... I was floored at this change and completely baffled that now I was taking him home. Long story short on this part - they refused to take our social worker # from our HD Ctr of Excellence to better understand HD - and also denied me to meet with the PT.

So, home we came on 9/14. He required 24/7 supervision - all done by me, his 79 yo mom and a prior student of mine who has been helping us for while (college student). On 9/22 while he was getting coffee - can't use his main arm and was carrying coffee cup in nondominent hand and only hand to "catch" himself, he fell. I called the squad and he was taken to the hospital. I was able to discuss with the emergency room doctor the situation around his falling both originally and the new fall - and he admitted my husband. He was transferred to inpatient rehab on 9/26. Our insurance company has been a pain - but what's new? - they decided on Monday afternoon to deny paying for more than one more day in rehab. (They wanted him to stay until Friday.) So, now he is home again. And while in front of the rehab staff (OT, PT, doctor, nurse...) he said he would slow down and be more cautious. Right... a few hours after getting home - he is going up the stairs w/out holding onto the railing all the time. And similar type impulsive stuff. I'm stressed. Tired. Feeling LOST. I thought him hitting my dad and barging in on the neighbors this summer was bad.

I've resigned myself to not being able to control what he chooses to do - even if it means he is going to fall (again) or hurt himself to where he damages his elbow permanently. He is nasty in his comments to me. (No surprise) And he expresses his opinion frequently. Now I'm researching Adult Day Care and someone to come "watch" him so I can get a break sometimes. (I work full-time - an urban high school math teacher & have a daughter in college and a son w/ Down syndrome). My husband is 50 (as am I!) Our daughter is 18 & our son is 21 (and works 10 hrs/week in food service at a college dorm & 10 hrs/week at the college medical center).

Thanks for letting me "vent". It's been a long few weeks (or past few months).

I am so sorry that the medical personnel are NOT responding to your husband's needs. I hope that Adult Day care is an answer for you. We were very fortunate that my brother's HD physician facilitated placement in a nursing home for my brother when his behavior was a danger to my mother. My brother was about 45 years old at the time. You will be in my thoughts and prayers.
Paula

Hi Danne,
I am not at all surprised that the medical establishment refused to learn about HD...how dare you insinuate that they don't know their business. After all, they paid big money to get that degree and they love to pat us on the head and go on with their day.
I would suggest a skilled nursing facility. This is not going to get better, you are going to wind up completely wiped out and of no use to him or your other family. This is a tough decision but there's nothing easy about HD or caring for someone with HD.
He will most likely not be tolerated at an adult daycare due to his behaviors. Those are geared for elderly folks who need a watchful eye on them and not much more.
I'm amazed that you are able to concentrate on your job, I had to quit mine when I had my son here at the house. It was really hard to place him in residential care, but it was the best solution for him and our family. I am now able to be his mom and I can once again contribute financially to our household.
My heart goes out to you and all of the thousands who live this everyday. My older son has now become disabled due to HD and I'm starting round 3 of the progression and all that it brings.
Take care,

Carla

This is going to sound really nasty but sometimes I think and it is my opinion only, because of recent events in my phds life, that when a hospital or rehab or whatever finds out that the person has HD they treat them differently and are just as satisfied in sending them out the door as they are in keeping then. I think that they don't have the time or expertise to treat someone who has continual movements or who doesn't take directions as well as others. I wonder if anyone else has experienced that recently?