Monday February 15 – You Focus on Recovery and I Focus on Being an Advocate

Today is the day of the family meeting. I prepared for it last night. I made a list of 26 questions. I am confident that the tone of the meeting will be positive and it will be about a plan to get you home. A subject dear to my heart.

As I drive to Halifax, my mind races over that queries that I have. Among them is an observation that has slowly gotten my attention. I have noticed that you seem to lack the concentration to focus on things – whether it’s TV or sports on TV, a movie, reading or being read to – your concentration time seems to be 15-30 minutes. I add this to the list of things to talk about.

I get there just in time to meet with the social worker. She normally works on a different floor but has come to meet with you for the first time. You are just getting to know each other. She has lots of smiles and good encouraging words. She says that now she has met with you, she will come to the family meeting too.

Today you and your PT put on a show for me. First you work on transfers from the chair to a platform bed. This is a more challenging transfer because there is no pole or handle to grab. You must push your body up with your right hand on the armrest and pivot and rest your hand on the side of the platform to complete your landing. You do it well with minimal help from your PT. In fact she is really there just to help you incase you get into trouble, not to help you do the work.

The PT student finished last week. Your PT felt lucky to have a good student who helped her do so much more. Today, you have the PT to yourself. She tells you that your transfers are getting better and better.

Your next trick was to stand between the parallel bars without assistance. You stood and your PT counted out aloud the seconds. She got to 60 … twice and said “That’s good, I know you can do more.” You teased her and suggested that we buy her a watch. She smiles and says she prefers to count because she counts like a ‘real Canadian’ ... the counting continues as she sucks her breath in. The two of you make quite a good show.

For the grand finale, you walk. At first you walk with the aid of the parallel bars. Your left leg kick is much stronger. “Kick and straighten and step.” She says “Very nice.” I noticed quite a difference since my last weekday visit 2 weeks ago. I am almost choking up with tears when the PT says, “Now don’t get me started.” She is pleased with your progress too. She has been somewhat isolated from your progress because the PT student did the walking with you. The last time she walked with you was last Tuesday – six days ago. She sees a big improvement with a real hip swing.

After PT we went to Timmy’s to celebrate a great PT session. I even let you have 4 sugar with your coffeemate. Which is a lot of sugar since 1 tbsp of coffeemate has a teaspoon of sugar too. At least this way you don’t get as much caffeine. By the time there is coffeemate and sugar there is very little room for the coffee.

We have a great talk about woodworking. You had an idea while you were working with your PT for something that you could make. Something that you can imagine making with one hand. The thought gets you quite happy. Then you start thinking about other things you’d like to do. “Maybe I’ll take up Martial art.” “Which marital arts are you thinking about?” I ask … falling for your set up. “Oh, I just want to take a martial art because that’s for one hand, martial arts is for two hands. A art is much harder, you have to be twice as fast with only one hand!”

I wish Tara could have heard this.

After lunch, Don from Truro visited. The two of you swap sports related topics back and forth. You joked about a lot of things with him. You even offered him a hip since “they didn’t take it away from me in August and I’m not using it now.” He reminded you that it is pancake supper tomorrow. You pondered for a moment about what to give up for lent. He reminded you that you already decided that. “Smoking! Congratulations on being smoke free for 6 months.” At the end of the visit, you decide to complete the daily OT log. ‘One positive thing today was: Don came to visit.”

Finally the family meeting. Despite the positive talk that I have tried to keep in my head, I was still nervous about this. We met in a conference room. The OT and PT are there along with one of your favorite nurse, your new social worker, your doctor (a physiatrist), her resident and his medical student. It starts out formally with the resident making a report to us. I start asking questions and the doctor steps in with answers.

You have a condition called Hand shoulder pain or Complex regional pain syndrome. This can become a chronic pain condition. Thankfully, it was identified shortly after you came to the NSRC and the medication has helped.

We talk a lot about the left neglect. The degree of neglect is severe. Severe neglect suggests a poor prognosis for recovery. I ask if that is a problem that will rewire in time. The doctor carefully said “It’s possible that it can improve somewhat ... but if we were to see someone make a complete full recovery, we would have seen it happen before now.” She reminds us “rehab is a long process, there is nothing magical about the rehab center – we have a good team that works together with lots of experience – but recovery happens after people leave rehab too. It’s part of a continuum.”

We talked about discharge dates. March 11th is still tentatively your date but there maybe some goals that need a little more time and that can be arranged for.

Your PT speaks of her experience with your case. She comments on how a prognosis is determined. It’s based on a few things: severity, how you have progressed since your stroke and your age. Your stroke was severe but you have made slow but steady progress and you are young, relatively speaking. She is somewhat hopeful that you will be able to walk with a cane. What really impressed her was your ability to focus. Paying attention and focus on the task on walking. This is a good thing that allows for more progress.

She mentioned that a brace is going to be made for your leg to allow walking. The doctor added that botox injections would relax the muscles and allow a better fit for the brace.

OT reports that transfers and self-care are the priorities for her. The left neglect is has been a challenge to incorporate it into making the transfers safe. She is also looking at our home and how to make it safely accessible to you. At the end of her presentation she and the social worker commented that there would have to be some home care support in place to get you home.

The doctor asks us what our plans are. “Home home home… we want to transfer to home not another hospital.” A local OT needs to be tracked down to do a home assessment. Wheelchair has to be ordered and grab bars and super-pole installed to make the bathroom accessible. The social worker suggests that Homecare Nova Scotia would be a resource for us.

A psychologist has been assigned your case ...Finally. She is to see you sometime this week. Your doctor is confident that talk therapy will be very helpful. Apparently, the NSRC has been under staffed because there is a maternity leave that wasn’t being covered. Seems odd no one could be found in time to cover a mat leave. I suspect that the gestation period of psychologist is the same as the rest of us and that they had at least a few months warning that there would be a mat leave coming up.

If one more person suggests to me that the inadequate manpower is because of funding problems, I think I will scream. I think human health care management people should work in a veterinary hospital for a year. Then, maybe they can truly appreciate the creative solutions that we can come up with when things boil down to ‘funding problems’.

We talk about private insurance and what that might cover. Since the public system may not be very helpful in some areas. I can see that we will have to budget things carefully.

I’m concerned about the left neglect. It seems like a stumbling point for further recovery. I ask about therapies for left neglect. There wasn’t a lot of response about this. I mention about the gossip that we heard that there was a left neglect study to do with video games to help with left neglect. “Oh yes, that’s Dr. Eskes. She is a neuropsychologist who is doing the left neglect wheel chair study that you are part of.” Coincidentally, we are to meet with her later today to go over some of the results of the wheel chair study.

We talk briefly about the ‘inappropriate language’ issue and how it cuts close to your natural personality. Your intent is to be funny and in any other setting what you say now would be funny, but the staff at the NSRC are very sensitive to ‘inappropriate language’ and the message is not received with the intent it was offered. I just wanted the team to know where your humor comes from and to lighten up.

Humor has always been one of your coping strategies. The after-stroke you is no different.

After this topic was put to bed, they asked you if you had any questions. “Just for a little morale boost, can we go over the advantages of having a catastrophic brain bled?” This was followed by nervous laughter from around the table. “You got to meet all of us!” the social worker chips in. Good food and lots of flowers are mentioned. “Actually” you said “We have a flower deficit.”

Your doctor nailed the answer; “You have found a wonderful support group with friends and family and although it’s hard to imagine, you have come a long way.”

After the meeting, the OT talks to me briefly and left me with the distinct impression that she believes you will need constant care when you get home. The severe left neglect will be an ongoing safety issue. Home support will be a big part of our family life. She also suggests that we make some major house changes to overcome the stair issue. Oh boy, more realities to swallow. I don’t know how I’m going to sell these concepts to you. You didn’t want to be a ‘burden’ … now not only will we need a sitter for you when I’m not home but we may need a new home!

When Dr Eskes and her student arrive to go over your test results, they find my head buried in your lap. I am feeling a little overwhelmed with the outcome of the meeting. I need time to process the information. I need time to make a plan.

Planning is my coping strategy.

Dr. Eskes’ research assistant met with you a few weeks before and the two of you did some tests to assess your left neglect and cognitive and memory skills. The results were mixed. Although you have a fair degree of neglect, you seem to have good cognitive abilities and fair memory skills. The tests were fairly simple like count backwards from 100. You said proudly “I could count backwards from a 100 by sixes too!"

There was a word memory challenge, which was a little harder for you. You quickly defended yourself by saying “If the words were more interesting to me, like Rod Carew stats, I would have remembered.” Dr. Eskes had to agree with you on this especially after she overhears you tease the research assistant about the time you spent with her doing the tests, recalling details that the assistant had forgotten!

The overall impression from the tests was that your neglect seems to be fairly confined to the domain of your left side. Dr Eskes says that it is common for left neglect patients to have other losses. Particularly a loss of focus.

There’s that word again … Focus. The PT said you had focus and now the neuropsychologist says that you have focus. I thought you had less focus. Perhaps I am looking at this the wrong way. The before-stroke Chris had great focus and the after-stroke Chris has less but apparently a lot more then other stroke patients.

Focus is good. Focus is essential for a good recovery. We will capitalize on your focus.

The drive home was difficult. Another thought filled hour and a half of driving time. My head was so full, I could have driven to Ottawa and it wouldn’t have been empty yet. The emotional swings – up, down, sideways, back and forward flips … even inside out. It was a real roller coaster ride. The realization that this was just another roller coaster ride and tomorrow there will be another and another. One ride after another. I can see no break in sight.

Self pity shrouds me as I drive to Truro. I think a naturally happy person gets to live in roles of their choice. You are born as a son, daughter, brother or sister, but you get to chose other roles - mother, father, husband, wife, friend.

I want to be defined by the roles I was born with and the roles I choose to have in my life not the roles that were forced upon me. You are a stroke survivor and I’m your advocate. Lately, that seems to be my preoccupation. I don’t like to play that role, but if I have to play it … I’m going to do the best that I can.

As I leave the city, I get a phone call from Tara. She isn’t feeling well. I told her to forget the gymnastics today and I would pick her up in an hour. By the time I got to Truro she was feeling better and is playing happily with her friend, Hannah. As they play, I spill my feelings out – all over Ann (Hannah’s Mum who looks after the children on Mondays). She listens to my worries, fears and sorrow. She offers me inspired stories along with healing and thoughtful talk. She helps me limp along this bumpy part of the marathon. She kindly draws me towards God in prayer. “God is waiting for us” she said “God is patient.”

“God show me the way and lighten my load.” She caught me at the right moment.

Maybe this is just one more level of letting go. Letting go of the things that aren’t really that important. The house is just a house. We make it a home. We had planned our house selection based on our children’s needs. The move into Truro was for them. When we moved to Truro, the house was just a house. We made it a home.

I tell the children about the difficulties with the stairs in our home. “We may have to move to a different house.” Both of them were immediately worried that meant that they would have to change schools and communities. “No, no we wouldn’t move far. We want very much to live near where we live now. Near the schools and near the animal hospital. The car is quiet on the way home. None of us want to move.

I wished a sign would come to tell us we will be OK.

When we got home, an email was waiting. It was from a friend whose husband had suffered a stroke and lost him a few years later to cancer. There’s my sign! She has the amazing strength to reach out to me and hold my hand after she suffered the loss that I feared I would have six months ago.

Things will be all right. I still don’t know what they will look like … but they will be all right.

It is because I feel that I have to compensate for your losses, I have so been busy dwelling on losses that I haven’t taken time to appreciate the positives. I would rather focus on the positives. Determination. Focus. Dreams. Future.