I know I can do this. I tell myself that at least 100 times a day. I tell myself that while I am crying hysterically, or throwing things across the room. I tell myself this as I try to reason with Dr's and Physical therapists that are full of crap. Every time I am close to surrender I tell myself " I know I can do this".
I am a 42 yr old woman from Boston MA. I am one of a family of 5. My mom is an amazing 75 yr old, and we live together in our family home. Taking care of her is a joy and she is my best friend. I have 2 older brothers, John and Billy, and a sister Helen. We are a very close, yet dysfunctional family, as I assume many are. We fight like crazy, but rally around and for each other no matter what is going on.
My brother Billy {51} had a left side ishemic stroke due to high blood pressure, congestive heart failure and atrial fib. His stroke was on 5/28/09. He was home alone when it happened and was found 16 hrs later. He spent 2 weeks in ICU At Mass General hospital here in Boston, then he went to Spaulding Rehab for 3 weeks and now he is in a Skilled Nursing home.
I hate the skilled nursing home.
I looked at 12 places in our area and this was the cleanest one and the only one with a decent rehab gym. I chose wrong. They are very unskilled, and uncaring. They have told my brother that even though he only had a stroke 8 weeks ago, that he will never walk or do stairs again, and will have to live with family forever. His PT is young, and very uneducated about strokes.
I have seen progress and feel that after only 8 weeks, to be treating him as if he will be wheelchair bound forever is very premature. I understand it may take time, but I see him walk with a cane up and down halls with us his family. He is able to do many things that he was not yet doing at Spaulding. They spend time working with his functioning side, but not really addressing his effected side. He has yet to have any movement of the right arm or hand, but I also don't see them work with it. He is able to get from his chair to the bathroom, about 4 steps and do his business without help. He showers in a chair just fine, and dresses himself. He wheels himself everywhere and is very active. He is very motivated and a really hard worker.
Before the stroke, my brother was a very active, athletic man. He stopped driving 15 years ago and Biked everywhere with a 50 lb backpack full of tools on. He was also a marathon runner, and a contractor.
I want to bring him home with me asap. I live in a 3 story home, we are up on a 5 foot retaining wall. The angle of all the stairs make wheelchair ramps impossible, the only thing that would work is a vertical lift, but I don't have $3500 to buy one. Once I have him in the house on the first floor He will be comfortable. I will make the living room the bed room. We have a half bath on that floor so he has a toilet, and I will buy a damn kiddie pool and bath him in my kitchen if need be until he learns stairs. My only major concern is getting him out of house for therapy. This stairs thing is crazy. I actually came up with a great invention I'll tell everyone about after I make a prototype.
In reading other blogs I am learning. In Ruth's blog I found out that I should wrap Billy's arm to help with the swelling. No PT ever told me this. Today I will spend some time on the phone trying to get him the best outpatient care I can. Spaulding has a stroke center a mile from my home. If I can get him down the stairs I can get him to therapy. He has medicare and medicaid already since he was on SSDI for bipolar disorder already. I know they will cover some things, but not sure how much yet. I Learn as we go.
Today I am searching for a few things for the house.
Hospital bed, and table.
Bathroom safety rails.
Portable wheelchair.
Kiddie pool for baths.
4 prong cane.
Urinals for night time.
Tub/shower chair for kiddie pool.
Hand held shower head for sink.
I have a list somewhere, but I know there is more on it.
I have never blogged before, but this seemed like a good idea. My friends can't understand what this is like for me, but here I know everyone gets it. Just having a place to let it all out is great.
Tomorrow I hope to blog again. Maybe I'll talk about guilt, and how I feel guilty all the time for being able to function is ways my brother can't.
