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I know I can do this.


rainyb

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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.

6 Comments


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Lorraine,

 

Welcome to the blog community. Your brother is blessed to have you and the rest of your family by him. You WILL get all of this figured out - your determination and love for your brother and your family shines through loud and clear.

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hi Lorraine:

 

welcome to our wonderful blog community. blogging as I have found out very therupetic. your brother is still baby in stroke recovery period at 8 weeks I was still at inpatient rehab center. don't listen to any therapist. no one knows power of brain. I stroked at age 34 & lived in colonial house too. not only I mastered stairs but has done lot of things post stroke. I started driving too after my hubby relented & today I am busy stay at home mom who chaffers around her son. so don't worry about it. It's great that your brother has great family support. family support is very important in survivor's recovery.

 

Asha

 

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Lorraine:

 

It sounds like you ARE overwhelmed with things to do. Questions that need answers. No hope from medical profession (common thing). things that you need to accomplish to bring your brother home. And the list goes on.

 

One suggestion that I offer is to start a journal on your brother's progress -- anything that he does that seems significant (no matter how small). Even if he moves his affected arm or hand a slight bit, write in the journal. Walks a little farther today than he did yesterday, write it down. Then when it seems like he has 'hit a plateau', get out the journal and just read how he HAS been making progress when it didn't seem like it.

 

As far as home modifications, ask around if any service groups or clubs would be willing to 'help' with the modifications. You might be surprised. If you attend a church, maybe the Men's Ministry group could help make modifications at your home, or might have resources of businesses that might be helpful.

 

For medical equipment and supplies, there is a mailorder place in Farmingdale, New York called Maxiaids. They offer a large array of products for independent living, including bath stools and benches, urinals, 4-prong canes, bathroom safety rails ( all shapes, sizes, configurations). Their phone number is 1-800-522-6294 and the website is: www.MaxiAids.com. On the website, there is a linkfor ordering the catalog, plus you can also peruse through an online catalog if you so desire.

 

I hope this infomation will be helpful to you and good luck with your brother.

 

 

 

Denny

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Lorraine: I know first-hand the overwhelming feeling. I stroked 3 years ago and my family was told I would never walk or talk again. I was on life support. I proved all the doctors wrong and have exceeded all the therapists expectations. Today I am about 85%...I still need a cane or walker but I can drive, swallow, dress and shower myself...the list goes on and on. Your brother is doing wonderful at 8 weeks. I can identify with the rehab process. My left arm still doesn't have good range of motion and I think it was because they didn't work it for the first few months. After almost 3 months I came home and did grulling out-patient rehab 3x/week (3 hrs each time). At home I got a pulley system that you can attach to a door and I exercised my arms that way. I had a list of exercises I could do with no equipment. Denny's suggestions are very good. Reach out to whoever or wherever you can. I bet you can even get someone to built a ramp to the house. Through insurance rehab will gave me a walker and reaching tool. My husband got rails for the toilets, a shower chair and grab bar. I later bought a cane. There is free information through the Am. Stroke Association - 2 magazines, Stroke Smart and Stroke Connection. Also a free booklet on Stroke Recovery. The road is not easy but it is do-able ONE DAY AT A TIME. Make sure to take care of yourself and remember to breathe when you get frustrated or agitated - time for a pause. Your brother is fortunate to have a loving family. Love goes a long way in recovery and for me God has helped me on every step. Keep coming back and share with us. You never have to be alone with your thoughts. We're here. Leah

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Lorraine,

You are doing well. Everybody's Normal Til you Get to know Them. This is the name of a book that we are reading for bible study.

Your brother is doing really well for only 8 weeks post stroke. He has the same things that William had, high blood pressure, congestive heart failure and atrial fib. Contact local churches and organizations. Somebody is bound to come up with a way to make a ramp for you. Medicare should be taking care of some the things on your list. Talk to social worker or case manager.

It is overwhelming. Just take it minute by minute.

Go Girl! You will do it. I can just hear it in your voice.

RUth

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Lorraine,Since the therapist is worthless, you are on the do-it-yourself rehab.Read Peter Levines book,Stronger After Stroke and you will know more than your medical team.If you need more ideas send me a note.

Dean

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