Today was a crazy day. I hadn’t planned on coming to Halifax until the weekend but I wanted to see your PT, social worker and another psychologist. To fit it all in was difficult but I did it. And I’m glad I made the effort because, tonight, I feel a lot better about the plan to get you home.
You have the beginnings of a sore throat today. You haven’t had a sore throat since before your stroke. You used to complain about a sore throat all the time. Of course, now I realize that you had a sore throat because of your smoking. How could I have been so naive? When you mention your sore throat, I swallow hard and ask, “Did you smoke yesterday or today?”
Your answer is ‘No”. But you are having the urge to smoke and it’s getting stronger. I tell you that you have to be strong because one cigarette leads to two, two to four and four to more ... It’s a slippery slope.
I got to see you do stairs today with your PT! She said that stairs are easier then walking. A handrail is more reliable then a cane. The system is beautifully simple. You lead with your good leg up the stairs and lead with you bad leg going down the stairs. The PT said, “ There is a ditty to remember it … The good up to heaven and the bad go … you know where.” She is far too sweet a person to feel comfortable saying the actual word, hell.
She reminded you and advised me of the ‘evil voice’ that lives in a stroke survivor’s head. The voice that will ask you to do risky things. She believes that you heard that voice on Sunday. The voice that said you wanted to practice walking. The voice that lead to the fall. I wonder if the evil voice comes from … you know where.
I ask your PT what the odds are that you will need stair lifts in the house. She thinks the odds are pretty good that you won’t! You want to know if you would be able to walk to the school to pickup the children. She thinks that the best that you can have for now is to be able to walk with assistance outdoors. “What I am hoping beyond hope is that you will be able to walk alone indoors.” She said. “My more realistic hope is that you will be able to transfer independently from the wheelchair so that once you get to a level you can transfer to another chair, toilet etc.”
At the end of the session, the PT suggests that she would like you to stay a little longer then March 25 (Your scheduled discharge date) “A couple more weeks more then the current discharge date” She says. “What!” You respond. You think that you are doing poorly and the ‘teacher’ wants to ‘keep you after school.’ The PT quickly assures you that you are doing well and that she believes there is more that can be done! The second extension is a good thing … not a bad thing. You are still not pleased. “I want to be home for the Boston Marathon, and the beginning of baseball season!”
Tonight I checked the dates. The Angels home opener is April 5, you would get home approximately April 8 and the Boston Marathon is April 19. You don’t see it but you are making progress. You will be home for many important dates.
After the physio session, we meet with the social worker (SW) and the continuing care coordinator (CCC). Together we formulate a plan for having you at home. Homecare NS will be able to provide some care as long as it is personal care or therapy driven. Yeh! It seems that the CCC and I are on the same page. At a later date we can apply for self managed care and hire a therapy assistant ourselves.
We loosely discuss schedules and responsibilities and how to hire someone. The CCC makes a good point when you lament that you don’t want to be babysat. She is not coordinating babysitting. She is coordinating therapy … ‘home based’ therapy. She is planning for your graduation from the NSRC to home therapies. That is something to rejoice over not regret. “We are trying to maximize what your independence will be.” She says.
The SW has found programs that you can be involved with like the stroke club and the VON day program. Between therapies at home and going to PT appointments. There are also other programs in Halifax that you can be involved in. We want to keep you engaged in your therapy and in life. You fear that you will end up a vegetable in front of a TV.
After lunch we meet with your new OT. Unfortunately, he is only temporary until another OT starts in two weeks. He, hopefully, has a loaner wheel chair coming soon and you will get to test ride it first to make sure that it will work for you before a wheel chair is bought.
Later in the afternoon, we meet with a couple and family psychologist. He is a soft-spoken slow talker, much like you. We both find him easy to open up to and as our discussion unfolds, several epiphanies occur to me.
The biggest epiphany is that you are scared. You aren’t really suicidal … you are just scared and that’s OK because I’m scared too. This situation is completely foreign to us and it will take time for both of us to adjust to it. Things will get better and thankfully, we have the luxury of time. Something some people don’t have as much or any hope and no time to adjust to their health problems.
My new strategy for your dark thoughts is to reframe them into words that they really mean …”I’m scared.” Maybe that action will take the discussion to a new level.
Tonight is parent - teacher night. Quinn’s teacher is pleased with his progress but sees room for more reading in his life. Pathetically sadly for me is that his French is at a level that is beyond my skills. Language has never been a strong suit with me, I have enough trouble with the English language. I had hoped that when the children started French immersion, I would be able to learn by their side. I have increased my vocabulary but I worry that I will lead him astray with his French phonetics. He needs you and your guidance in reading French.
This is a special parent role that is waiting specially for you.