Sunday May 16
It didn’t work. I’m not surprised but I am always hopeful that something I say will influence you to make the very big choice not to smoke. But really, who am I, to think that anything I say or think would be so powerful as to overcome the addiction’s voice.
This morning at 2 am, you woke and wanted to smoke. I persuaded you to go to back to bed. But at 6:45 you were up again. “I need to go out.” I should have known that it was just wishful thinking. As I get you outside, I remind you that this is the addiction that is forcing you to smoke not you. “I know” You said, “My love for you made me choose not smoke last night.”
Love? Well where is your love this morning? I didn’t say anything to you ,,, I know that this angle is not worth pursuing. I have come to realize that the choice not to smoke requires every ounce of your will power. You had it at 2 am but it went with your sleep last night.
Who knows when your will power will return.
This weekend completes the third week of your new life at home. I have to say that I have noticed improvements. You are much steadier on walking up and down the stairs and I rarely have to cue you to watching your left foot as it moves. In the past, when you kicked out your left leg, unless you made a conscious effort to look to see if your leg actually moved, you may not realize it if it didn’t and when you took the next step with your right leg you would fall because your left leg is not in a position to support your body when you lift your right leg.
Oddly, going up the stairs is easier then going down the stairs. I think that this is because when you step up with your right foot and then haul your left up after, the toe of your left hits the riser of the stair case and the sound cues you so that you know the foot is in a good position. Of course the same thing can’t happen for going down the stairs. Instead we have to rely on the good old-fashion technique of actually looking at where you are going.
I am looking forward to Wednesday afternoon. You will have the PT and OT people here who will teach me and your homecare workers how to do
Lately, visiting Mum has provided a safe place to vent my frustrations. Since she was moved to Colchester hospital the same weekend that you came home, Mum and I have had weekly debriefing sessions. It has been helpful to me and I think it makes Mum feel a little better knowing that she can help in a small way.
After the children have caught her up to date on their activities of the week, she turns to me and asks “How are you doing?” The children had gone outside to play with the scooter that Quinn got for his birthday. “The health care system is broken.” I said. I have been so frustrated lately and my anger has turned to the health providers. Actually, not the providers, the system in which they work.
I am frustrated that we have so much technology that can save a life and yet, the system can’t find a way to provide the patient with care after the initial treatments. You have been home now with only homecare in place for three weeks. While some would say that is good, I would argue the point especially on the days when you are feeling down. You need emotional help. I need you to get help from someone that is not just me.
At your low moments, I feel low. I feel low and angry. I feel that the system ate you up with promises of a miracle. Then it squeezed you out the other end with nothing to help you in your recovery for the long term. It would have been more humane to deprive you of oxygen on the day of your stroke then to deprive you of psychological services since your release from the rehab.
Thankfully, I don’t get these feelings often … just when you are low. I don’t get them for long … just until the next supportive friend comes along and helps me see how far you have come. I may not have these bad feelings for long or often but … man… these moods are intense.
The intake practical mental health nurse, who did a phone interview with you the other day, described you as a ‘medium high’ risk. Unfortunately, due to increased demands on their services, the earliest appointment that you could get was in the middle of July. That will make it a full three months since your last psychological session. I guess we should be thankful that you are not a ‘high’ risk patient who has to wait three months!
Just when I thought that life couldn’t get any more complicated, it did. While I was visiting Mum at the other rehab in Pictou, you went to church. Well that is harmless enough. After church, you arranged for a friend (who shall remain nameless to protect the innocent) to pick you up and bring you back to our house. It seemed like a simple plan. The problem first started when Tara, Quinn and I were half way to Pictou and realized that we had your cane in the car still. Tara called you on the cell just before the church service to let you know the problem. “No problem, I will manage.” You said.
On our way back to Truro, we called again to let you know we were on our way home. You and your friend went to his house to spend a little time together. That sounds nice too. When we got to the friend’s house, you looked pale and felt nauseous. The friend pulls me aside. “I did a stupid thing. Chris had a few drags off my marijuana joint and I don’t think his body can’t handle it.” The friend is visibly shaken and was worried that he would have to take you to the outpatient clinic at the hospital.
You were a little unsteady on your feet and both of you were feeling rather bad … and stupid. “Congratulations guys, most women can do stupid things all by themselves. Apparently it takes two guys to come up with a really stupid idea.” I said sarcastically. We loaded you into the car and unloaded you at our home and put you to bed. Tara was with us throughout all this while Quinn was visiting a friend. She wanted to know what all the hushed talking was about. In the car, you came clean. “I smoked a little marijuana and drugs are bad.” Tara looked scared. I assured her that it was a dumb idea but “Daddy will be fine once the drugs get out of his system.”
Once you are in bed, Tara is full of questions about marijuana and what it does to your body. I can tell from her questions that she is worried and repulsed by the thought that a parent ‘did drugs’. We talk about it and I share with her my limited experience with marijuana. Neither of us had good experiences with the stuff and I always felt it was a rather overrated experience. I mention to Tara that since neither of us like the effects of marijuana, she probably won’t like it either.
There is no harm in planting a seed early in a young fertile mind.
Bev, from the church came to visit while you were resting today. She brought a meal and some sound advice. She sat next to you today in the service. She realized some of your more challenging struggles. Difficulty scanning and staying alert. She also knowledge that to some people, the chair and the knowledge that you have a brain injury may make people feel a little ackward about you. She made an excellent suggestion. Get people to visit you in pairs so that they can get to know the new you and over come any apprehension they may have with seeing you with your stroke legacies.
This evening you were pretty relaxed. You have a plan. You won’t share it with me until you started to do it. “Give me the phone and my phone book. I got to make some calls.” You call a few people and do a survey. “What is your favorite number between 1 and 10?’ You ask. You write down the responses. You ask Tara and Quinn. They both say eight. You ask me. I say 7. You write down the numbers and take the average. “It’s six point something.” “Ok, what does that mean?” I ask. “Well in six days I will set my quit-date for smoking.” You reply like it is obvious.
You don’t like that it so far away. You decide to override the calculation and go with your gut. “Thursday, My quit-date is going to be Thursday.” You announce.
I want to believe, but I can’t. I won’t. I don’t want to be disappointed again. I want to be surprised. We look at the prescription of Champix that we got this week form the doctor. The package instructions suggest that you start the drug one week before the quit date. You won’t take the pill today.
My gut feeling that you won’t quit on Thursday is getting stronger.
You are enthused by the decision to quit. You get on the phone and confirm visitors for the week. I am pleased that you are taking the initiative. In a small way it compensates of the bad feeling that I have about Thursday.
At bedtime, you proudly tell the children that May 20th is going to be the day. They want to believe too.
Phone call from Bela at the church. She is among a few active individuals who want to organize a family walk to raise money for us. We talked about this idea and felt blessed to have such a wonderful community. Bela’s idea was that the funds could go to your care. We talked about this and decided that we would be honoured to be involved in the event especially if the funds could go to research. Specifically, stem cell research.
To some people the words, ‘Stem Cell Research” conjures up images of experiments on human fetuses. Thankfully, stem cell research these days has nothing to do with embryos! There are no real ethical issues. The stem cells are harvested for treatments are actually taken from one's own body! In Dr Mendez's case - his research involves harvesting skin and isolating cells from the skin - growing them in a tissue culture and then injecting them into specific areas of the brain with his 'Halifax Injector' robot that he designed!
In veterinary medicine, we do stem cell treatments using the same concept except the cells are harvested from body fat, injected into joints and used to treat joint disease. This has been used in horses and dogs very successfully.
Eventually this approach will be used to make total knee and hip replacements in humans obsolete!
Essentially, seeds that restore health to an area are harvested and sown within one's own body! No risk of rejection and no need tissue matching etc because the cells were yours to begin with!
It's too bad that Ex-President George Bush Sr painted all stem cell research with the same brush. (However what do you expect from a rather reactionary man.)
As I see it – fund raising for stem cell research makes a good opportunity to educate the public about the stem cell therapies that are in our future. Stem Cell treatment can be applied to many many diseases. As long as the disease is not heritable or cancerous - stem cell treatments can help - that would include most degenerative diseases.
Bela and her colleagues have tossed about all sorts of ideas to organize the event. They even picked a date. Sept 26. A Sunday afternoon. Families of all types are welcome. Young and old, two legged and four, walkers and runners. It should be a great time as well as a good thing that will go on to benefit many people.
Monday May 17 - Pathway
It’s a bad day today. You are quiet and down. The excited mood from last night, when you calculated your official ‘Quit Date’, disappeared with your dreams. Quinn is sick today and I think I am too. This is the first day since your marathon started that I just wanted to sleep. Quinn and I slept in and you slept in your chair most of the morning, while the homecare worker busied herself with little jobs about the house.
In the evening, while we are waiting for Tara and Quinn at gymnastics and soccer, we talk in the car. We talk so much more about things then we used to. I love talking with you but sometimes the subject material is heard to listen to. If you aren’t talking about smoking, you talk about being useless and that we would be better off if you were in a long term care facility (LTCF).
I don’t know how you can think that we would be better off. I can’t imagine visiting you with the children in a LTCF. I would dread every visit. Every visit would remind me that I failed you in some way and that I failed our family. I told you this. You are quiet and then you ask if you can smoke in the car.
‘Oh God.’ I pray under my breath, ‘Give me the strength … help me find a way.’ You hear my whisper and ask what I meant. I remind you of my mantra: ‘Everything always works out for the best.’ “I was asking God to help me have faith that this is true. To help me find my way.”
“I have to find my way too. My pathway … the Cashen pathway. “ You said.
It was a lifetime ago, before the thought of children entered our minds, we went on a vacation to Ireland. The birthplace of your ancestors. It was partly a vacation, partly a personal quest of an identity that you wanted to connect to and partly a quest to look at round towers. Round towers are a passion that Donald ignited in you. The study of them and the theories about what they were built for. Donald, was well read on the subject and he shared his knowledge with you.
We rented a car in Dublin and started driving south. We visited a number of round towers as we circled the coastline. Just north of the Dingle peninsula is a river. It is a special river that your Mother had spotted many years ago on a map. The Cashen River.
This was where you were going to explore your roots. It was November. The weather is warmer in Ireland then it is in Canada in November but the water is still cold. Your ambition was to swim in the Cashen River. To soak in the waters of your forefathers and become one with them. It was an overcast day but that didn’t deter you. You walked in bravely and swam a few meters. It was cold. I video taped it from the shoreline.
Of course the whole event took very little time. It seemed a little anti-climatic. As we left the area, we notice a small museum very close to the Cashen River. We thought that this must be the true reason for the excursion there. The museum was about the area and the people who lived in the area before the ‘troubles’. There was not information on the origin of the name for the Cashen River. Overwhelmed with the need to know more, you asked a lady at the desk of the museum who the river was named after. She said in her very Irish brogue “Cashen River? Well Cashen is Gaelic for pathway. A river was a pathway many years ago.”
Pathway? You were a little deflated with this news. I thought it had a very spiritual and inspirational message to it. You didn’t. When we get back to Canada, you tell your parents about the pilgrimage to the Cashen River. You tell them with a little disappointment about the meaning of Cashen. Pathway.
Now the word pathway has a new meaning. The life path. The choices you make. The attitude that you choose to wear. They are all pathways in your Addiction to Life Marathon.
Tuesday May 18
I thought about yesterday and I put away the Champix. It has many side effects that if they surface, they can deepen your mood. “Depression, suicidal thoughts” and unbelievingly “Completed suicides have been reported” is listed on the package insert among many other warnings.
I know that these warnings are really a complete list of all observed outcomes from the drug in all patients and not everyone experiences side effects but I am worried that if you are already hovering about the ‘deep despair pit’, all you need is one more reason to fall into it.
You swing between light and dark moods as easily as the wind blows. I find it hard to know from moment to moment which way the wind is blowing. Some days there is a prevailing wind and on some days, it is gusty and can come from any direction. I can’t keep up to the shifts. The Champix drug for smoking cessation could complicate this more.
At bedtime we talk about it. You are adamant that you are going to stop on Thursday. That is when you want to start the Champix. The problem is that package specially says: Set a quit date and start the drug at a low dosage one week before and gradually increase the dose. I suspect the reason for this protocol is to lessen the side effects. I suggest that you start the drug on Thursday and quit next Thursday and start the patch next Wednesday night to replace the body’s nicotine demand.
This plan sounds too complicated to you. You want to quit this Thursday. I hope that with a good night’s sleep I can get you thinking about the best approach to quitting more carefully tomorrow.
Wednesday May 19
It’s PT and OT day at last. We can get you doing some therapies again. You have had no physiotherapy since you left the NSRC other then what I have been plugging away at. I have been very frustrated with this but now we can get going on this.
Both the OT and PT can see an improvement with you in just the past two weeks!
You laid on the bed while eight, yes that’s right, eight women watched the OT put the moves to you. The OT starts with your should and moves down your arm to the fingers. Stretching and putting your limp appendage through all the usual movement that one makes in a day. This is an important exercise to do. We want to maintain as much normal flexibility in your arm as possible so this if other therapies are available to you in the future, You will have the best chance to benefit from them.
She then demonstrates how to cue you to dress. You are able to dress you top half fairly well but you need help with the lower body.
The next act belongs to the PT. She shows the ladies some exercises that you can do on the bed. And in your chair and even at the kitchen counter. For the grand finale, the whole audience files down to the mancave and you show them how you can sit on the stationary bicycle and bike. They are all impressed. “That would tire me out quickly!” One of them said.
I videotaped the whole performance so that when we finally find someone for self managed care, we can use the video clips to train them too.
Today’s homecare worker and her student, spent a lot to time talking with you. She suggested that you start to make a ‘Life List’ … a list of things to keep you focused and keep you going. You renamed her list the ‘Bucket List”.
You are not in a place to think about life … you just think about death.
You are down tonight. I know this is all part of the stroke but how long is this going to go on for? I have to get some idea so that I have a realistic expectation. Up until now I have been thinking that we could just talk out your sadness and eventually it will go away… What if it doesn’t?
Now, I realize that your sadness is more profound and deeper seeded then I ever imagined. It grows out of you from the deeper parts and is entwined with your belief system that everything happens for a reason.
As in the past, when you are down, I am down. I have not found a way to protect myself from your emotional swings yet. This will be an essential skill to develop. I just have to figure out how to do that.
Tonight, you are trying to make deals with God. “Just let me win the lottery and I will believe.” You are desperate for proof of some sort that God is on your side. As I try to explain that God doesn’t work that way, I absentmindedly, pick up and read a card that you had got in the mail today. My eyes and heart grow big as I read it to myself and then aloud to you.
It’s from a friend from the church who had moved away. Iris, she wrote a little note of encouragement and ended her note with some well chosen and timely words. “I admire you and Gwen for everything that you have been through. It is wonderful how we are given the inner strength when we need it.”
I wrote out her words on a piece of paper and put it on your clipboard that contains the ‘Things to try to do today’ list.
Thursday May 20 – DynaVision
Some days I forget that you surviving this stroke, is a miracle. People don’t want to hear that an event on the surface might look like a miracle but in fact it seems like hell. I have to keep reminding myself that your story has not finished. In fact it is really just starting and the miracle hasn’t fully revealed itself to us yet. There are faint glimpses of a miracle on some days but the full miracle hasn’t happened yet.
This is a miracle in progress.
Tonight was a little exciting. No, the ‘Quit Day’ passed with cigarettes going up in smoke. The excitement was in the evening after I got home. I had booked an appointment for you with a company called Pro-Vision. Kelly and her husband, Brent, operate a machine called Dynavision 2000 Light Training Board. http://www.dynavision2000.com/dynavision_in_rehabilitation.php
It is used to train athletes. Kelly is interested in seeing if it has other applications too. Other applications like post-stroke recovery. Currently she is assisting a local doctor to do a study with children and learning difficulties. The thought is that it will help their attention span and focus.
The equipment consists of a large wallboard that has 64 lights on it placed in concentric circles. The lights can be controlled to flash for various lengths of time, in two different colours and in a random order. Each light has a button as part of the light. Kelly explains the rules to each game as you sit in front of the board and scanning to see the lights flash.
As I read more about it, I can see there could be many applications for this training tool.
You had your first session tonight. You are quite excited about having something that you can really work on. Although there are so many ordinary things in day to day life that will help you too - I want to jump at the chance to get you excited about something.
At the end of the session, you were very enthusiastic about the training. “Will I be able to walk better? Or run? Drive?” You asked Kelly. Sadly, there are no answers right now … it is just an idea.
I think that this is worth a serious try. Even if it helps you a little, it will be worth it. In your estimation, if it can restore your vision to the point of being visually a safe driver, then it will worth it.
We are going back next week
You decided to start the Champix. I am nervous about this decision considering the warnings that came with it but I will watch you closely.
Friday May 21
Respite care – I finally get the concept of it. I had thought of it as help with the extra work to look after you but that’s not the real value. The real value of respite care to me is that it gives me a moment of two to step back and take a breath and recharge. Without that opportunity, I would surely lose it. Respite care is for the caregiver’s mental health.
Hollis mentioned mood swings to the dark side lasted a little over a year with him. “You can’t control your thoughts.” He said. “How long did it take you to get past that point?” I asked. “About a full year since I got home from the hospital.” Was his reply. My heart felt stomped on. I don’t know if I can keep going for a year.
It the long weekend and I’m on call and Mum is on a weekend pass from the Pictou Rehab and your brother, Steve and his wife, Laura, are coming to visit. It should be a rather crazy weekend but we will get through it.
Juanita brought Mum to our house tonight. I get her set up on the hospital bed in the family room complete with one of the walkie talkie’s that we use. Her stay at the rehab hospital in Pictou has been a little disappointing. Her condition is worse and her left leg is weak. Frustratingly, nothing can be done until the neurosurgeon sees her and so we have to wait until that happens.
I don’t know why I am frustrated, I should be use to the ‘system’ by now. The more I think about our health care system the more I realize that it is not patient centered. I had thought that it was staff centered but now I realize that our health care system is centered on serving the ‘system’, not patients. If you want any hope of having good service from the system – you have to have a strong advocate. Most patients are not in the position to fill this role. The job falls on the family members to have a strong voice.
This is the weak link to universal health care. There is very weak indirect sense of responsibility to the patient. What can a disgruntled patient do? Complain and refuse to pay their bill? No. All we can do is grit our teeth and pay our taxes and vote … but that won’t change the system.
Saturday May 22 - Steve and Laura’s visit.
We were busy all day with the day to day chores that don’t get done as they ebb into our life. Groceries, a friend’s birthday party, cleaning the house, brushing Annie so the house stays clean for about 60 minutes longer then last time. All this takes time out of a rather lovely Saturday morning and afternoon. I longed to get into the garden but there was no time.
As we run about doing errands, you say something that, in hindsight, sounds quite profound. “This year is the worse year of my life, next year will be the best year of my life.” I was caught off guard. I didn’t expect to hear you say these words. But you did. I even asked you if that is what you really meant to say. You said it was!
It seems that 99% of the time you are covered by darkness and then every once in a while a brilliant ray of light will come from you and your inner strength will shine through. The ‘Best Year’ implies HOPE. I only got a glimpse but it was there. I know that it is there.
We picked up Steve and Laura at the airport and whisked them back home to eat some dinner that Juanita had made. I had just finished my dinner when I got called into the vet hospital. It was well timed. When I got back the table was cleared and the kitchen was cleaned.
I am looking forward to being able to take a little time in the garden tomorrow. It is growing without me and my hands have a dirt deficiency. I need to play in the garden. Playing in the garden and walking Annie in the woods are my mental health medicine. I want to stock up with these therapies this weekend. Who knows when I will get another chance.