Saturday, November 7, 2009

Thursday November 5 - I don’t want to be a rehab.

In this marathon – you are my heart. Every step of improvement you made is like a heart beat to me – your heart makes blood, filled with energy, flow through my body. It gives me energy to keep going. The wonderful community of people around us is really my brain. The social network is like a network of neurons that inspire and canal the energy to keep me running for you.

Every timely rhythmic beat enables me to run and keep going. I can’t do this with out you. You are my heart.

If there is a stumble in your recovery or a little hiccup in your care, I falter – my heart misses a beat and I stumble. Thankfully, the large community of friends helps me find a way to be picked up again.

Dr. Feltmate comes to see you. You tell her that you feel a little isolated and lonely. No doubt partly the result of being moved to a new hospital and the MRSA isolation rules that applied over the weekend. We discuss that the private room may not be stimulating enough for you. A move to a semiprivate room would have more activity but more difficult for the children to visit freely. For the present, we decide to stay put.

You are frustrated with your interaction with your world. You have difficulty working the call button for the nurse and the buttons on the TV. Even eating at time is difficult – your depth perception seems good one moment then quite bad – the next moment. You have to re-learn things. After Hollis’ stroke, he was unable to remember how to use the microwave – the machine was completely foreign to him. As much as I would love it if you give up watching TV, I expect you will be highly motivated to learn how to operate the TV again. The dishwasher may be another story.

You express concern to Dr. Feltmate that another stroke could happen again. This possibility scares both of us. The final diagnosis – Idiopathic critical hypertension – which is another way of saying ‘We don’t know’. Currently, your blood pressure is measured frequently. And your blood pressure medication has gone from, a whopping, five different drugs down to a simple diuretic. Dr. Feltmate says that ongoing monitoring will be a given as you recover.

Over the past week you have frequently, asked me “Am I having another brain bleed – look at my scar - do you see a swelling?” You feel you don’t get good sleep at night. You are restless with worry. This would aggravate any emerging depression.

The fear of another stroke and the frustration of adapting to your new body along with poor sleep are good reasons to be depressed.

You had said, just a few moments before Dr. Feltmate came in, that you felt depressed. I decided to take that as a lead – a call for help. I tell Dr. Feltmate. I am concerned that depression is a given – At present I don’t think you are depressed – not by my definition.

When you get overwhelmed and sad, a change in conversation can help you find your way to hope again. But without someone leading you away from depressing and negative thoughts – you naturally migrate to them. I am very worried that depression will have you in full grip when you are at the rehab hospital and I will less able to support you and advocate for you.

Since most antidepressants only start to work after a few weeks, it’s better to start them now then later. By starting them now – we are treating toward to future.

To help cheer you up, I go out and rent some DVD’s for you. Comedies are the prescription for a time like this.

While I’m out, the Kristin and Ainsley have you fitted into new chair. This one has gears! Forward and reverse. You can propel it by pumping your right hand back and forth and twist the handle to steer. The chair is designed so that you sit upright and use your core muscles. This is your next step closer to rehab.

After Dr. Feltmate leaves, you get sad and say, “I owe an awful lot of people so much.” “You don’t owe any one anything” I reply “You have rewarded their good deeds by not dying and making progress every day.” You groan, “I don’t want to be a burden.”

“You are not a burden, you will never be a burden.” I pleaded, ”You will fight this injury and heal the best way you know how, as long as you keep trying and never give up – you will not EVER be a burden.”

I told you that we must not think in terms of owing people and being a burden – those are negative thoughts. I asked you “When you decide to run a marathon, do you think of it as a burden or a challenge?” “A challenge.” you said. Then you added “If I have to run it right now, I would say that it’s a challenge that’s a burden.”

“I don’t want to hear the word burden.” I said. “I don’t like that word. Promise me that from now on – every time you think burden you will say rehab.” Tears are flowing now. To this you answer in your deadpan slow talking way – I still can’t tell what you are really thinking – “I don’t want to be a rehab.” As always – you do the very thing that made me fall in love with you – you made me laugh – even when I don’t feel much like laughing.

I remind you of the Pay it Forward movie. “You have paid it forward all your life, now it’s time to let other people pay it forward. Think about all people who you have helped. Donald, people at the church, people at the school, fellow runners. You have paid it forward. All you have to do is keep working at getting better.”

At the mention of Donald’s name, you ask me to please visit with him and let him know that you haven’t forgotten him ... You are still paying it forward.

I discovered that you have a bit of a rash on your back. It’s itchy and I scratch your back of you. As I’m doing this I jokingly say, “I will make you a deal – for every 29 back rubs I give you – you owe me one.” To this you reply “There is nothing I’d like more then to scratch your back while watching the sunset.” “Great” I said. “I am holding you to this – On our 29th anniversary – you get to scratch my back while watching the sunset.” I warn you that I am writing it in the journal so I can hold you to it.

Juanita, Farley, Maddie and Mum visit. You try to engage Maddie but she won’t have anything to do with you. She holds her distance. You eat your lunch. She seems interested in what you are eating. You offer her a spoonful of tapioca pudding. She accepts it and likes it. She came a little closer, still a little unsure but intrigued, and takes another mouthful. It’s almost a replay of the hours you spent trying to tame our newest, previously a wild scaredy cat, Himmy.

At 1 pm we start the family meeting. Your team gather around your bed and introduce themselves. They are: Jane, the social worker, Kristin and Jacinda, physio, Ainsley, occupational therapist, Liz, the regional stroke coordinator, Cindy and Sarah the dieticians. Seven people plus Dr. Feltmate (who couldn’t make the meeting) are your team. After the introductions, you announce “I’m Chris and I’m the patient.”

Cindy, the dietician is impressed with your ability to swallow so well – not often can a patient go from tube feeding to thickened liquids to no restrictions this quickly. You did very well in the swallow challenge. Cindy’s goal is to get your weight up to a more normal weight – possibly about 25 pounds. You will get regular meals be day and the peg tube feedings at night.

We discuss your visual field. In Halifax, it was thought that you have a visual deficit on the left side. A consult with an ophthalmologist is planned. There is a difference between what you can see and what you attend to visually – again this refers to your acknowledgement to your left.

The new wheel chair will liberate you. The way the chair is designed will help your core strength. And keep thing interesting. You feel that you are improving. You said you would like to get to some area where you can really practice with the wheel chair. You feel this would help boost your confidence in using the wheel chair and for rehab.

A rehab assessment was done at the QE2 and you were found not ready yet for rehab. Nadine is the rehab assessor and she will follow-up with your progress and determines when you can go to rehab. This can be done by tele-health and save a trip to Halifax.

You talk about your phantom pain. The pain that comes randomly and goes before you can even identify where it’s coming from. Some of the stretching exercises cause the pain but you feel that your

You ask the group the question that has been on your mind. “Do you see me running in a year?” You are met with a moment of silence and then everyone kicks in their words of support. It will take time and patience is important and don’t get stuck on too big a goal. You have to take little steps. It’s hard work and you must balance the work with rest.

The last goal was swallowing well – you passed mileage marker – sprinting by. At the present the next goal to get ready for rehab. Core strength.

Jane asks you how are your children doing. You feel you are neglecting them. You are so happy to see you. “they are awesome and cooperative.” You say. Jane points out that you are showing them something that most parents never get to show their children – how to keep going in the face of adversity. How to keep going and just do it. They will notice

You talk about not getting good rest, when you can’t rest you feel abandoned and when you want something, you can’t do much for yourself. You are very dependent on the nurses to come when you call. This is compounded your distortion of time.

At this point you are quick to say that your nurses have been great. In fact I told the team about your inquiries about Vickie’s marital status. Someone suggests that you may want to have a harem and I might have something to say about it. But you say “Gwen will still be a head of the harem.” Thanks!

You feel good about the physio sessions and you feel trust, you love the pace and honesty that exists between you and Kristin and Jacinda. You are worried about failure.
We point out to you there is no failure – the only failure you can have at this point is failure by not trying.

You are concerned that Halifax rehab will be like a boot camp … with whips! Kristin gives you a little outline of what to expect.

At the family meeting you say that you are scared of being alone. This concerns me too, especially on the days that I am working. I also hate leaving you alone after a visit. It will be a while before the antidepressants are working. The private room enables to have visitors outside the visiting time because you have no roommates. There is a lot of latitude to the visiting rules. The nursing staff recognizes how important it is for you to have social interaction. You need us to cheer you on right now.

You wonder aloud to the team how much you would be pushed at rehab. You will be your biggest drill sergeant for improvements you will have the highest expectations for your improvement.

“Do you think I’ll ever run again?” Kristin says every stroke is different and every recovery is different. She says that she never gets to see the finished result because people go off to rehab after she is done.

Your team, with the exception of Cindy, is a group of self-professed non-runners. But they pledged, that if you get better and show them how well you do, that they would run a little way with you.

You are leery of your ability to run. Jane says that recovery is a long process. Liz joins in and reminds you that you didn’t suddenly wake up on day and decide to run a marathon. You started running a kilometer, then two and gradually build up your strength and endurance. The goal to do a marathon was a long way off but you start one step at a time.

You wonder if it’s unrealistic to want to run again in a year or two. “I don’t think any dream is something you should deny.” Says Jane.

At the end of the meeting, Jane asks if you have any more questions. You reply in your usual straight faced way “Are we exchanging Christmas presents?” Your team is getting to understand your sense of humour.

From your bed you read the caption on one of the pictures on the wall opposite the bed. ‘Are you weird or something!’ It’s the picture of you taken with Mady (then 5 years old, a daughter of friends in Ottawa). We vacationed with them in PEI the summer of 1999. You loved to tease Mady, and Mady would ask you “Are you weird or something?” The two of you tossed this phrase back and forth for the whole week. It was a game. A game that neither of you forgot. Since that summer, whenever we met them, the words ‘Are you weird or something’ would come up. The caption is with a picture of you and Mady flaked out on the sofa having an afternoon nap.

Today you wondered aloud “I wonder, what she would think of this now?”

Just as I leave to pick up the children, your parents call and Mildred and Laurie come for a visit. I am relieved that you wouldn’t be alone.

I meet Kevin at the house and send the chickens off with him to spend the winter with him. He said that I should tell Tara and Quinn “They can visit any time.” He won’t do anything with the chickens except let them live happy chicken lives. Kevin is shaken by your stroke. He is dealing with another friend’s illness too – which he found out about the same day as he heard about your stroke. He is rooting for you. He said he has always admired your fathering instincts and nurturing patience. I think Kevin may discover that he has those instincts too as he cheers you along the way to your journey.

Before bed as I fold laundry Janice calls to share more details of her visit with you. She is so impressed with how far you have come. She mentioned that those days or nights, when you are lonely and I don’t want to leave you, We should call her and the two of you can have a talk while I slip away. This though comforts me knowing you won’t feel so alone.

You are my heart. I need you to continue to improve a little (or a lot) every day – that is what feeds me and keeps me going. One step after another. One foot in front of the other. I need you to keep going.

1 comment:

  1. So glad the positives keep on coming. Sounds great. I am so very happy for you both and for the kids. Certainly be a long hard road with bummps and great times along the way.
    Never give up is a great motto.