We have to get up early to get Quinn to the gymnastic meet. I worried, needlessly, that I wouldn’t be able to get you and the children up and dressed, fed and out of the apartment by 8 AM. But I did it! Actually it was 8:03 when we left but I still felt pretty good about it.
We get to the Alta Gym exactly on time. Quinn is whisked off for warm up exercises. I maneuver your chair through the crowd and find a spot where most of the gym is to your right, so you won’t miss much. As we get settled, you notice out of the corner of your right eye another parent. “Isn’t that Sam’s Mum?” you ask. Sam was on Quinn team last year. He and his family moved away last year. Sam’s mother was accepted to veterinary college in PEI and started to study veterinary medicine this past September.
I had met her once before, but I couldn’t remember what she looked like or her given name. I just knew her as ‘Sam’s Mum’. We spotted Sam doing warm up exercises. “She must be Sam’s Mum. Go over and say Hi.” You demand “I would but I wouldn’t be able to get the wheelchair there.” “What if she is not Sam’s Mum – I’d be embarrassed.” You refuse to let me cave and continue to coax me to go. To get you to shut up … I humor you. You were right. She is Sam’s Mum.
Sam’s Mum, Lisa, asked almost immediately about you. I said “See for yourself – we broke him out of the hospital for the weekend.” As we talk, it turns out that Lisa and I have more in common then a shared love of the veterinary medicine and sons who love gymnastics. It turns out that Lisa’s husband, Wayne, suffered from a severe brain injury five years ago. He was in a motorcycle accident. A truck ran into him. He was in very serious condition for a long time and in a coma for six weeks.
During the long days and nights while Wayne lay there fighting for his future, Lisa stood as a guardian over him. She said that she would not allow anyone near Wayne that did not have a positive attitude. She felt that this was a big reason for their survival. She spoke passionately about her experience.
Positive thoughts are instrumental to a positive outcome.
At the time Sam was five years old and Mathew was a mere four months. I can’t even imagine how strong this woman, who stood before me, must be. I am in awe. She shrugs her shoulders and says, “You just do it.”
Wayne is with his family at the meet. Lisa introduces him to you and the two of you talk. He shakes his head and says, “The wheel chair brings back memories… wheelchair to walker, walker to cane.” Now he is walking without anything. He has to be careful on stairs but he can do them. He is even thinking about going back to school and doing another degree.
You are in awe of him.
Quinn had a fun at the meet. You played the over protective parent … angry with the judges for not seeing your son’s brilliance. No ribbons this year. We decide, along with Quinn and Tara, that the best ribbons are the ones you give yourself. They are the ribbons that mean the most.
Quinn is happy with his performance … even without real ribbons … that is what counts.
The birthday money that Tara got was sitting heavy in her pocket. She needed to spend it. You and I had a good parental talk about the money. Your Mum was generous with the birthday money this year and it seems like a lot of money ... even to a ten-year-old. Every year, to date, you have taken birthday money and put it in her savings account. “This year should be different.” You say. “It’s not every year that you turn 10.” Tara is pleased with this decree.
While at the meet, I rack my brains trying to think of where Tara could spend her money in a fun, yet responsible way. Since we are in Halifax, I wanted to think of something that is not available in Truro. Then it came to me. ‘Michael’s Craft Store’. Last year while Quinn was at the same meet, we went to Michael’s to hunt for glow-in-the-dark sticks and paint for your Tidal Boar Runners team and the Cabot Trail Relay.
The four of us spent a long time roaming about the store with ideas bouncing around in our heads of the unique projects that we could do. After a few hours and a few dollars we emerged with bags of treasures.
When we got to Michael’s, Tara eyes widened … she made a ‘bead’ line for the bead section. You were tried, and wanted to wait in the car. I was disappointed, I had hoped that this trip to Michael’s might spark an interest that you would consider a hobby.
You are not ready for this idea yet.
It didn’t take long for Tara to load up on beads. I reminded her about her birthday budget. The bead fever caught on, Quinn spotted a bead kit complete with tools. He knows to the penny, how much money he has in his wallet. He checked out the price and whispered to me, “I want to buy this, I have enough money, but will you carry it?” Then in a quieter whisper he said, “I don’t want anyone to see me buy it … it’s too girly.”
At the checkout, we were one of those families that no one wants to get stuck behind in line. Tara was over budget, and because the prices weren’t on the beads they each had to be scanned again to figure out how to downsize the order. Finally, she was under budget by four dollars! She was quite proud of herself.
Fran meets us back at the apartment. She is in town for the weekend. We celebrate Tara’s birthday dinner. Beef tacos and chocolate mousse - as requested by Tara. At dinner I asked Tara what her top three memories were for the first decade of her life. She didn’t even have to think, She said without hesitation, “Trip to Boston, the moment when Mummy came to us and said that Daddy was going to die and be an organ donor and the day that Quinn was born.”
After dinner, you and I talk. You worry about dragging the children down with you emotionally. As parents, we had hoped to inspire our children but the fact is that our children are continually inspiring us.
“Past, present and future, I am scared of it all.” I tell you to stop thinking about the past and start thinking about the future, because hope only lives in the future. You have to look forward to the hope. I remind you that we have been through the whole range of emotions. We went from NO HOPE to a new level of hope. As one hope is realized, a new one hope forms and slowly enters our lives. Every realized hope is like a ribbon. A sign of accomplishment.
Your dark negative thoughts make me think about Lisa and her resolve to not let negative thoughts entry her husband’s inner sanctum. How can I protect you … from you?
You are alive! That deserves a ribbon. I know that you don’t feel hope now … but you will.
Wednesday, March 10, 2010
Tuesday, March 9, 2010
Friday March 5 – A Family Weekend
I talked with the family psychologist this morning. We have an appointment set for next week. You and I and the psychologist. I hope is that we can lay the groundwork to help you realize your abilities, as a parent. These abilities are still very much intact, they are just laying below the surface and you have to tap into them and believe in yourself.
This is going to be very important. Because the sense of failure that you have about parenting, affects the children too. Like any mother, I want to protect them and yet allow their influence help you heal. This will be a delicate balancing act that I don’t know if I’m capable of.
You didn’t get to see your psychologist today. It shows. You are not it a good place emotionally when we finally get to the NSRC. I thought to myself, this is going to be a long hard weekend.
Thank God we have activities planned to help keep you engaged in life rather then let you slip into despair. Between, Quinn’s gymnastic meet, Tara’s birthday and Fran visiting, I think we can keep your emotions on the positive side.
This is going to be very important. Because the sense of failure that you have about parenting, affects the children too. Like any mother, I want to protect them and yet allow their influence help you heal. This will be a delicate balancing act that I don’t know if I’m capable of.
You didn’t get to see your psychologist today. It shows. You are not it a good place emotionally when we finally get to the NSRC. I thought to myself, this is going to be a long hard weekend.
Thank God we have activities planned to help keep you engaged in life rather then let you slip into despair. Between, Quinn’s gymnastic meet, Tara’s birthday and Fran visiting, I think we can keep your emotions on the positive side.
Monday, March 8, 2010
Thursday March 4 – The Promise
I knew it would be a ‘snow day’ before I even opened my eyes. Why? It certainly wasn’t because of the vast amount of snow outside - because we did not even get a flake. It wasn’t the radio that tipped me off because I was woken up before the radio even turned on.
It was because of Quinn. Quinn, the sleepy head in the family, was awake and ready to go by 6:45am. Tara was right on his heals ... Why do they do this to me? If it was a school day Quinn would be hibernating like a bear and Tara would be ‘bearly’ up.
Since we didn’t have to get to school, we called you. You and the children had a great morning chat. Tara plays some piano over the phone followed by the two of them playing you a duet ... ‘Heart and Soul’. Tara tells you all about the science fair that she wants to do over the next few weeks.
She is very excited about it.
Shortly after Quinn awoke, he felt sad. He knew why. When he realized that it was a snow day but you weren’t here to enjoy it with them, he felt sad. He misses you. He pats Himmy as he talks to you. Quinn tells you all about the class trip to the maple sugar farm next week.
He is very excited about it.
You tell me about your experience with the treadmill. They had you in a safety harness of some sort that would catch you if you fell. You walked while holding onto the frame with your right hand. The pace was slow but you did it with your PT. It went great and you felt good. You can picture doing this for a long time.
You are very excited about this. I am excited about this.
You were not very excited about an experience you had last night. The night nurse didn’t want you to have too much coffee before bed … you were on your third cup! Your nurse recognizes that caffeine and sleeping pills don’t make good bed partners. This combination is complicated by the predictable outcome of needing to go to the bathroom in the middle of the night.
You are getting tired of being told what you can and can not do.
Today, I met with a local psychologist who I have met with before a handful of times over the years. I was getting tired of waiting to get help through the NSRC. About three weeks ago, I decided that I needed take charge of the situation and seek my own help. It seemed that everything that I did to help you out of your despair seems to be temporary or make things worse. I needed help.
She was an immense help. She helps me figure out ways to reframe what you say so that you can see that is not helping your recovery. She talks about your roles within the family and how you can contribute to our family’s wellbeing. She even shares with me ideas about the children. How to protect them from your dark thoughts and odd reactions.
The children have rarely seen you frustrated at anything. Now they see your frustration level rise all the time. These new reactions of yours are very normal considering the situation but they need to be put in context for the children so they know that the frustration is about you and your recovery, not about them.
Ironically, a counselor at the NSRC called today to offer some family counseling. I think that it would be worthwhile to do and with March break coming up the timing is perfect.
While Tara is waiting for Quinn’s piano lessons to finish, we walk about you and your left neglect and how frustrating it must be for you. I didn’t get very far with the concepts. I can see that this is a conversation that will have to unfold in parts. Her logical mind will understand things better if I can let her figure out the issues that you have.
With March break coming up and us living in Halifax during the week and getting to see more of you, I hope that we can unlock some of the mysteries about your new self to the children.
I tried calling you but the line was busy. Just as I was going to call again, Marianne called. She had just been talking to you and the things you said scared her. Your dark talk is extending out from family to friends.
I call you right back. It’s a bad call … the worst call yet. You are broken emotionally. I can see no threads of hope to pull on. I can see nothing but tears. You are so distressed that you say you don’t want to talk! This is a first … you are shutting me out.
Ironically, just this afternoon, the psychologist had said that truly depressed people push their support away. I was rallied by that thought because up to this minute, you had reached out every time you were in pain. But now you are withdrawing. I was scared. You hang up on me. I was really scared.
The thing that sent you off the deep end was a conversation you had with your PT. She said that ‘24 hour supervision’ was going to be a reality. Your independence snatched away. This is not new news to you but you heard it this time with a new level of understanding. It has cut you down to nothing. “I’m going to need to be babysat.” I said between sobs.
Thankfully, the children were in bed asleep. I wail in despair and cry – I’m out of control. Then the phone rang … I thought that it might be you. It’s Fran. I take a few deep breaths and try to hold it together. I last for half the time it takes to say ‘Hello’. She comforts me and tries to understand what I’m saying.
As I attempt to talk with Fran, the computer screen goes into screen saver mode. It flashes a mixture of pictures taken over the past year. Pictures of you at the climax of your life … at Boston and doing active things with the children and pictures of you nearest death in a hospital bed in the ICU. These pictures are a painful reminder of the past year and what it held for us.
Fran lends a listening ear to my worries and fears and allows me to talk things out. For me talking or writing out my worries helps me see them in a better prospective. I felt a little better as Fran and I end our phone call.
I collected myself. My peptalk to myself went like this: ‘This is not new news – Chris is not worse physically – he is getting better physically every day – if we can just get through this then he will find happiness on the other side. If he is happy we will be all right.’
I called you back with these thoughts in my head. We talk and we share. You start to talk about death again. “I want to come home this weekend … I just want to come home one more time …” I don’t let you finish the sentence.
As we talk, I realize that you feel so powerless that the only thing you think that you can control is your life …or death. You know that if you talk about death before you do something desperate than I will stop you. You tell me that you don’t want me to hate you if all I find is a note.
I pray, God, Please give me the strength to know what to say to this.
I didn’t know what to do. I decide to empower you and yet put limits on you. You have always been a man of your word. When you say you’ll do something … nothing will stop you until it’s done. Your word has always been very important to you so I ask you to promise me something.
“Promise me that you will wait at least one full year after you come home before you try anything like that. I know that with time you will feel better. After that year I may ask for an extension but if you can promise me that you will stick this life out for a full year then I promise not to hate you ever.”
You agree to this. You didn’t like the loop hole of the renewal possibility in one year but you agree. I said from now on we will just refer to this as ‘The Promise.’ You agree.
It was because of Quinn. Quinn, the sleepy head in the family, was awake and ready to go by 6:45am. Tara was right on his heals ... Why do they do this to me? If it was a school day Quinn would be hibernating like a bear and Tara would be ‘bearly’ up.
Since we didn’t have to get to school, we called you. You and the children had a great morning chat. Tara plays some piano over the phone followed by the two of them playing you a duet ... ‘Heart and Soul’. Tara tells you all about the science fair that she wants to do over the next few weeks.
She is very excited about it.
Shortly after Quinn awoke, he felt sad. He knew why. When he realized that it was a snow day but you weren’t here to enjoy it with them, he felt sad. He misses you. He pats Himmy as he talks to you. Quinn tells you all about the class trip to the maple sugar farm next week.
He is very excited about it.
You tell me about your experience with the treadmill. They had you in a safety harness of some sort that would catch you if you fell. You walked while holding onto the frame with your right hand. The pace was slow but you did it with your PT. It went great and you felt good. You can picture doing this for a long time.
You are very excited about this. I am excited about this.
You were not very excited about an experience you had last night. The night nurse didn’t want you to have too much coffee before bed … you were on your third cup! Your nurse recognizes that caffeine and sleeping pills don’t make good bed partners. This combination is complicated by the predictable outcome of needing to go to the bathroom in the middle of the night.
You are getting tired of being told what you can and can not do.
Today, I met with a local psychologist who I have met with before a handful of times over the years. I was getting tired of waiting to get help through the NSRC. About three weeks ago, I decided that I needed take charge of the situation and seek my own help. It seemed that everything that I did to help you out of your despair seems to be temporary or make things worse. I needed help.
She was an immense help. She helps me figure out ways to reframe what you say so that you can see that is not helping your recovery. She talks about your roles within the family and how you can contribute to our family’s wellbeing. She even shares with me ideas about the children. How to protect them from your dark thoughts and odd reactions.
The children have rarely seen you frustrated at anything. Now they see your frustration level rise all the time. These new reactions of yours are very normal considering the situation but they need to be put in context for the children so they know that the frustration is about you and your recovery, not about them.
Ironically, a counselor at the NSRC called today to offer some family counseling. I think that it would be worthwhile to do and with March break coming up the timing is perfect.
While Tara is waiting for Quinn’s piano lessons to finish, we walk about you and your left neglect and how frustrating it must be for you. I didn’t get very far with the concepts. I can see that this is a conversation that will have to unfold in parts. Her logical mind will understand things better if I can let her figure out the issues that you have.
With March break coming up and us living in Halifax during the week and getting to see more of you, I hope that we can unlock some of the mysteries about your new self to the children.
I tried calling you but the line was busy. Just as I was going to call again, Marianne called. She had just been talking to you and the things you said scared her. Your dark talk is extending out from family to friends.
I call you right back. It’s a bad call … the worst call yet. You are broken emotionally. I can see no threads of hope to pull on. I can see nothing but tears. You are so distressed that you say you don’t want to talk! This is a first … you are shutting me out.
Ironically, just this afternoon, the psychologist had said that truly depressed people push their support away. I was rallied by that thought because up to this minute, you had reached out every time you were in pain. But now you are withdrawing. I was scared. You hang up on me. I was really scared.
The thing that sent you off the deep end was a conversation you had with your PT. She said that ‘24 hour supervision’ was going to be a reality. Your independence snatched away. This is not new news to you but you heard it this time with a new level of understanding. It has cut you down to nothing. “I’m going to need to be babysat.” I said between sobs.
Thankfully, the children were in bed asleep. I wail in despair and cry – I’m out of control. Then the phone rang … I thought that it might be you. It’s Fran. I take a few deep breaths and try to hold it together. I last for half the time it takes to say ‘Hello’. She comforts me and tries to understand what I’m saying.
As I attempt to talk with Fran, the computer screen goes into screen saver mode. It flashes a mixture of pictures taken over the past year. Pictures of you at the climax of your life … at Boston and doing active things with the children and pictures of you nearest death in a hospital bed in the ICU. These pictures are a painful reminder of the past year and what it held for us.
Fran lends a listening ear to my worries and fears and allows me to talk things out. For me talking or writing out my worries helps me see them in a better prospective. I felt a little better as Fran and I end our phone call.
I collected myself. My peptalk to myself went like this: ‘This is not new news – Chris is not worse physically – he is getting better physically every day – if we can just get through this then he will find happiness on the other side. If he is happy we will be all right.’
I called you back with these thoughts in my head. We talk and we share. You start to talk about death again. “I want to come home this weekend … I just want to come home one more time …” I don’t let you finish the sentence.
As we talk, I realize that you feel so powerless that the only thing you think that you can control is your life …or death. You know that if you talk about death before you do something desperate than I will stop you. You tell me that you don’t want me to hate you if all I find is a note.
I pray, God, Please give me the strength to know what to say to this.
I didn’t know what to do. I decide to empower you and yet put limits on you. You have always been a man of your word. When you say you’ll do something … nothing will stop you until it’s done. Your word has always been very important to you so I ask you to promise me something.
“Promise me that you will wait at least one full year after you come home before you try anything like that. I know that with time you will feel better. After that year I may ask for an extension but if you can promise me that you will stick this life out for a full year then I promise not to hate you ever.”
You agree to this. You didn’t like the loop hole of the renewal possibility in one year but you agree. I said from now on we will just refer to this as ‘The Promise.’ You agree.
Thursday, March 4, 2010
Wednesday March 3 - Loss Fulfills Hope
At 9 am the local OT along with a gentleman from Lawton’s and his student came to the house to discuss ‘the plan’. This is a bit of a challenge since we don’t know exactly what we have to prepare for. Every week and in fact every day ‘the plan’ is a little different. Walk a little … walk a lot, not able to do stairs at all …. able to do all stairs. There are so many outcomes – it makes it hard to plan.
We decide to identify all the potential things that you might need but we will wait until the last minute to find out which we will need. This mostly pertains to the stair lift and the ramp. After that we identify things that can be rented since their use may be temporary or adjusted once you get home. Finally we identify the things that need to be done regardless of how you are when you come home. I can get started on these things right away.
We had a good visit with lots of experienced ideas floating about. The attitude was safety first with a healthy doses of ‘enabling independence’ and ‘optimism’. I felt good when they left. Now I just have to wait for the projected costs and figure out how to budget for it. On the surface, it seems that our health insurance through the church doesn’t cover much. The OT feels that there maybe some things that she can do to help.
The OT asked how you were doing. “He is doing well with the walking and the possibility of doing stairs, but it’s hard to celebrate these successes when he surrounds himself with bad thoughts. Mental health is the most important part of getting well.”
Today an odd thing happened to me at work. I was in an appointment with a couple and their dog. The Mr. gets a text message on his phone and looks at his wife and says: “Rosie just got her kidney.” By the wife’s expression, I knew that this was a very good thing. I figured that Rosie must be a friend who needed a kidney badly. Then the husband says to me that his wife got a new kidney last year. She had been waiting for a long time.
This sixty seconds of dialogue transported me back to six months ago. To the time that you were almost an organ donor. Even now, I can’t verbalize my thoughts on the subject. Your kidneys almost went to other people who were holding on to their form of hope. Having lived on the one side of the organ donor decision, it felt very odd to witness other people live in the other side.
Donating organs is a case where one person’s loss fulfills another person’s hope. I know you would have been proud to be an organ donor. But I still feel numb on the subject.
I couldn’t get through to you tonight, first no answer then the line was busy. Then it was after 10 pm and you can’t call to patients. I called your Mum instead and we had a good talk about your progress. It will be a while before your parents can come to visit.
With your Mum still recovering from multiple surgeries, she needs to mend. Hopefully this summer, they can get here for a visit. Hopefully you will be settled in your new way of life. You will find your old roles and rework them a little to be your new roles.
The summer should be a better time. By then we should be able to acknowledge all the losses. Maybe then your losses will find a way to fulfill our hope.
We decide to identify all the potential things that you might need but we will wait until the last minute to find out which we will need. This mostly pertains to the stair lift and the ramp. After that we identify things that can be rented since their use may be temporary or adjusted once you get home. Finally we identify the things that need to be done regardless of how you are when you come home. I can get started on these things right away.
We had a good visit with lots of experienced ideas floating about. The attitude was safety first with a healthy doses of ‘enabling independence’ and ‘optimism’. I felt good when they left. Now I just have to wait for the projected costs and figure out how to budget for it. On the surface, it seems that our health insurance through the church doesn’t cover much. The OT feels that there maybe some things that she can do to help.
The OT asked how you were doing. “He is doing well with the walking and the possibility of doing stairs, but it’s hard to celebrate these successes when he surrounds himself with bad thoughts. Mental health is the most important part of getting well.”
Today an odd thing happened to me at work. I was in an appointment with a couple and their dog. The Mr. gets a text message on his phone and looks at his wife and says: “Rosie just got her kidney.” By the wife’s expression, I knew that this was a very good thing. I figured that Rosie must be a friend who needed a kidney badly. Then the husband says to me that his wife got a new kidney last year. She had been waiting for a long time.
This sixty seconds of dialogue transported me back to six months ago. To the time that you were almost an organ donor. Even now, I can’t verbalize my thoughts on the subject. Your kidneys almost went to other people who were holding on to their form of hope. Having lived on the one side of the organ donor decision, it felt very odd to witness other people live in the other side.
Donating organs is a case where one person’s loss fulfills another person’s hope. I know you would have been proud to be an organ donor. But I still feel numb on the subject.
I couldn’t get through to you tonight, first no answer then the line was busy. Then it was after 10 pm and you can’t call to patients. I called your Mum instead and we had a good talk about your progress. It will be a while before your parents can come to visit.
With your Mum still recovering from multiple surgeries, she needs to mend. Hopefully this summer, they can get here for a visit. Hopefully you will be settled in your new way of life. You will find your old roles and rework them a little to be your new roles.
The summer should be a better time. By then we should be able to acknowledge all the losses. Maybe then your losses will find a way to fulfill our hope.
Wednesday, March 3, 2010
Tuesday March 2 – Darkness and Hope
I feel your dark feelings. For six months, I have been living with Hope by my side. Hope has been like an invisible friend … you can’t see her or touch her but you feel comfort from her presence in your life. Now I am finding it hard to even feel hope. How can anyone feel hope when they are depressed. You feel hopeless and there are moments that I am starting to feel hopeless too.
My rational mind is appalled at my thinking. How can I not see hope when I can see you walk with a cane? The fact is … even a physically healthy person can not be hopeful without their mental and emotional health. A person’s mental state trumps everything else.
I am desperate to get help to you. I can’t offer any more help myself. Nothing that I have done has helped you. On my walk to work with Annie, I decide to call your NSRC doctor and found out about the psychologist consult. To date, you are sure you haven’t seen a psychologist, only a social worker.
Dr. Mendez came to visit you today. You said he was very nice and said that you had to keep up the hope. The future will hold things that might help you. No specifics, just vague promises of hope. His area of research in neurology is stem cell therapies. It’s still early. Too early to speculate what can be done. But we can still hope.
This afternoon, Your NSRC doctor returned my call to her. I told her that your emotional state is getting worse. I feel that it is starting to affect me and the children. I asked about the seemingly phantom psychologist. “Oh she has seen him twice now.” Your doctor says.
I told her that I don’t believe that you know who your psychologist is because you told me that you hadn’t seen a psychologist yet. Your memory is good. You know the names and positions of all the key team members as well as most of the nursing staff who come and go, depending on the shift. Yet for some reason you didn’t know who the psychologist was. Your doctor promises to ensure that you understand who your psychologist is.
I am meeting with my own psychologist on Thursday to try and sort through the crap that is going on in my head. I hope to learn some strategies from her to help you through the dark times. Your NSRC doctor said that thoughts that circle around and around are a common result for brain injured people. She felt that we could learn ways to help you ‘re-frame’ your dark thought.
She also mentioned a therapist at the NSRC who is working towards being a family counselor. She felt that he might be of some help to us as a family. She had heard that Dr. Mendez had come to visit you. I guess that Dr. Mendez can’t sneak into places like the NSRC.
We talked a bit about stem cell therapy. I mentioned that I imagine the onset of stem cell treatments is going to change how rehabilitation medicine is done. She agreed and said, in fact, that the annual meeting for rehab medicine this year was about that very thought. There are some exciting times ahead for brain injured people. I hope that you will benefit from it.
Since our family meeting a few weeks ago, I have tried to educated myself on left neglect and various therapies for it. There are some drugs that can be used with mixed results and some other mechanical therapies. I wanted to know more about what works and what doesn’t. You have been started on a new drug for left neglect that is used for Parkinson’s patients.
We talked a bit about strategies for coping with left neglect. A therapy called the Lighthouse strategy was discussed. Your OT had given me a copy of it to read. Your NSRC doctor feels that this is a worthwhile undertaking.
Today, you had a great session with your PT. She knows just what to say to motivate you. You did more walking with the cane and did the stairs twice! Tomorrow, your PT suggested that she might set you up on a treadmill! You are quite excited about this idea. The treadmill that we have at home could be rigged up with a harness to support you so that you can practice walking safely.
This afternoon, Ann and Paula from Truro came to visit you. Individually, they both are positive and spiritually grounded people, but when they are together, their positive messages almost send you into orbit. This visit was the real pick-me-up of your day.
Tonight’s phone call was the easiest one in a week. No tears! With all the positive messages coming from all directions … Dr. Mendez Hope for the future, PT’s hope for the present and Ann and Paula’s Hope from your community… With all this light being shone on you, how could you feel any darkness?
My rational mind is appalled at my thinking. How can I not see hope when I can see you walk with a cane? The fact is … even a physically healthy person can not be hopeful without their mental and emotional health. A person’s mental state trumps everything else.
I am desperate to get help to you. I can’t offer any more help myself. Nothing that I have done has helped you. On my walk to work with Annie, I decide to call your NSRC doctor and found out about the psychologist consult. To date, you are sure you haven’t seen a psychologist, only a social worker.
Dr. Mendez came to visit you today. You said he was very nice and said that you had to keep up the hope. The future will hold things that might help you. No specifics, just vague promises of hope. His area of research in neurology is stem cell therapies. It’s still early. Too early to speculate what can be done. But we can still hope.
This afternoon, Your NSRC doctor returned my call to her. I told her that your emotional state is getting worse. I feel that it is starting to affect me and the children. I asked about the seemingly phantom psychologist. “Oh she has seen him twice now.” Your doctor says.
I told her that I don’t believe that you know who your psychologist is because you told me that you hadn’t seen a psychologist yet. Your memory is good. You know the names and positions of all the key team members as well as most of the nursing staff who come and go, depending on the shift. Yet for some reason you didn’t know who the psychologist was. Your doctor promises to ensure that you understand who your psychologist is.
I am meeting with my own psychologist on Thursday to try and sort through the crap that is going on in my head. I hope to learn some strategies from her to help you through the dark times. Your NSRC doctor said that thoughts that circle around and around are a common result for brain injured people. She felt that we could learn ways to help you ‘re-frame’ your dark thought.
She also mentioned a therapist at the NSRC who is working towards being a family counselor. She felt that he might be of some help to us as a family. She had heard that Dr. Mendez had come to visit you. I guess that Dr. Mendez can’t sneak into places like the NSRC.
We talked a bit about stem cell therapy. I mentioned that I imagine the onset of stem cell treatments is going to change how rehabilitation medicine is done. She agreed and said, in fact, that the annual meeting for rehab medicine this year was about that very thought. There are some exciting times ahead for brain injured people. I hope that you will benefit from it.
Since our family meeting a few weeks ago, I have tried to educated myself on left neglect and various therapies for it. There are some drugs that can be used with mixed results and some other mechanical therapies. I wanted to know more about what works and what doesn’t. You have been started on a new drug for left neglect that is used for Parkinson’s patients.
We talked a bit about strategies for coping with left neglect. A therapy called the Lighthouse strategy was discussed. Your OT had given me a copy of it to read. Your NSRC doctor feels that this is a worthwhile undertaking.
Today, you had a great session with your PT. She knows just what to say to motivate you. You did more walking with the cane and did the stairs twice! Tomorrow, your PT suggested that she might set you up on a treadmill! You are quite excited about this idea. The treadmill that we have at home could be rigged up with a harness to support you so that you can practice walking safely.
This afternoon, Ann and Paula from Truro came to visit you. Individually, they both are positive and spiritually grounded people, but when they are together, their positive messages almost send you into orbit. This visit was the real pick-me-up of your day.
Tonight’s phone call was the easiest one in a week. No tears! With all the positive messages coming from all directions … Dr. Mendez Hope for the future, PT’s hope for the present and Ann and Paula’s Hope from your community… With all this light being shone on you, how could you feel any darkness?
Monday March 1 - Brush Your Teeth and Smile
For a moment this morning, I thought about the garden next year – a flicker of normal thinking. It was a brief thought but a welcome thought. I have noticed that the ground is soft. Although it is still pretty cold … I can’t wait until I get my hands in the soil. I was working in Mum’s garden the day of your stroke. It seems fitting if we could end this chapter of our lives with me elbow deep in beautiful nourishing soil again.
Your NSRC doctor mentioned that talk therapy would be good for you. “A multiple-modality approach”. She said. To date, I don’t think you have seen a psychologist. More important then that, you don’t think you have seen one yet.
I walk in to see you eating breakfast. Oh, you look so good. You are wearing one of my favorite blue shirts that make your eyes shine. A few days of beard growth adds to your look, I think. It seems like a very long time since I last saw you. Your hug felt wonderful and charged me up for the day.
As you sit on the toilet, we talk. Most of our deep conversations take place in the john these days. I ask about some of your experiences at the NSRC this past weekend. “I don’t know.” You said. “You don’t know?” I ask. “Listen, if you could make money by the amount of things that you DON”T know, then I’d be a millionaire … I’d be a f---ing millionaire!”
Your regular PT is not working today. You have fill-in PT and a new student. I asked if it were possible to video-record you walking so we could show the children. The PT team got you standing and then walking between the parallel bars to warm up. After this we went into the hallway and you walked almost halfway around the hallway loop. It is tiring work for you but you stick it out.
When you are in physio, you are of an entirely different mind set. You are upbeat and enthusiastic … almost joyful. I had thought that this was because of the wonderful PT you have working with you but today I realize that’s it the act of physio that brings out the best in you. It is not who you are working with that is important … although I think that you have been blessed with wonderful PT’s since you started this journey.
You want to show the video to the children on the weekend. You want this to be a present to Tara. “I don’t know when I can handle being a good parent to the children. They are the most important part of my life. I don’t want to breakdown.” We talk about how we will protect them form your dark moments. You start thinking like a protective parent again. “If I breakdown, then we should try to remove the children from the situation to protect them from seeing me like that.”
You have more negative thoughts. This talk drains me emotionally. You are stuck in the punishment stage. “I am planning to spend the rest of my life with you.” I said “But I’m running out of ideas of what to say to you to help you get past this difficult time.” This must be your rock bottom. You have to get past this stage.
You struggle with your thoughts and search for answers to unanswerable questions. “The more answers I have the more I can continue to move in the right direction. It takes me longer to process things. What you can figure out in seconds takes me an hour. I don’t get there as fast but I still want to get there. I will need your help ... because I want to be a whole person. I want to be of some use.”
Your OT visited. We discuss the plans to accommodate stair lifts. The insurance plan doesn’t cover much. So we will have to be creative to make these changes. You start to feel a little down with this information. You interpret the lack of insurance funds as being a good reason for you to vanish. You reason “If I wasn’t here then these costs would go away.”
The OT and I are quick to shut down where your thinking is going. “We may save on some small monetary costs but think of the huge emotional costs to your children.” Growing up without any father is a big disadvantage to any child. “Kids living with parent who have challenges grow up being more empathetic and stronger as individuals.” Your OT agrees. She knows first hand. She has a parent who had some significant health issues when she was a child.
Challenges make you stronger … not weaker.
We talk about your wheelchair. The OT is in the process of identifying a wheelchair that would be appropriate for you. Soon we will have an idea of what type of chair and the associated costs.
Next week you are going to attend a wheelchair skills group. This group meets twice a week to teach wheelchair safety tricks. It should be good because you might be able to learn to compensate for your left neglect.
After the OT left, you said with despair “I wanted out. Why didn’t you let me go?” You start circling the decision to do the surgery. I know that it is the stroke that is talking not you – but it’s still hard to hear. I know that you will get better with time but you question this.
You question your ability to parent our children. “Your intuitive sense of how to be a parent is still there.” I said. “You may have to adjust the ‘how’ part of parenthood but you still know the why, when and where parts of parenthood.”
“You will have to help me be a parent – I don’t even know what they ask me sometimes …I’ve changed.” I think that your relationship will change with the children … but it could be a better relationship. You point out “I will need more sleep and with all my crying, Quinn wants to comfort me. I could read to Quinn, go to bed early with Quinn … he would love that.”
“I’m learning as we go, Gwen … as much as the kids are. I do feel good about that but with Tara on Saturday. Not hugging her – I didn’t even know it. I am so busy thinking about myself, that I can’t even think about. “Look how lucky we are that Tara is a good communicator. She didn’t lock her feelings up like I would have and let her hurts fester. She told a grown up and shared. That is great that she can do this.
We will all learn from each other.
Next Monday is Tara’s birthday. We go to the gift shop in the VG and look at cards. One for Tara. We will celebrate her birthday on Sunday. We also get a card for your OT who is leaving for a different position on Friday. She promised you that the two of you would go out for coffee on Friday.
We get back to your room and you are stuck on bad thoughts again. Out of desperation, I say ”This is a conversation that you can have all by yourself now … why involve me … It makes me feel bad. We have been over this and over this. You must know all my answers to your worries by now … we have done this dance so many times.” Just as I was about to loose it with you, the phone rings. It’s your Mum. Saved by the bell.
Dr. Mendez’s office called her and Dr. Mendez is coming to see you tomorrow first thing in the morning! She asked if I could be with you when you meet Dr Mendez. I’m on call tonight and the children go to school and I go to work at 8AM. I don’t see how I can swing a road trip to Hailfax at 6:30 in the morning on such short notice.
Your Mum is worried that without an advocate by your side, Dr. Mendez will not be as impressed with our plea for help. I sincerely doubt that. Your Mum is a gifted letter writer. I’m sure her letter said all that needed to be said … and who better to make a plea then a mother ... even Dr. Mendez has a mother … he should know how powerful a mother’s will is.
On the way home Tara plans her birthday. “Gift cards for books, an ice cream cake, a whole day with you Mum and for dinner I want beef wraps with chocolate mousse for dessert. This is the benefit of having another planner in the family. I can just sit back and take orders, rather then have to think of everything myself.
Tonight’s bedtime call you circled the ‘I am not much of person’ thought. After a day of pulling you out of these deep dark holes, I am worn out. About all I could do was try to change to subject and talk about Dr. Mendez. “Just be yourself and tell him that you are very motivated to want more for your recovery.” I said. “Let him connect with you.”
Maybe there will be hope with Dr Mendez.
“I just want to say one more thing.” Oh no, I think, please don’t go down that path again – I don’t think I can do it. But you surprised me with what you said next. “Do me a favor please.” I hesitate, “What?” I ask. “When you brush your teeth tonight, look in the mirror and smile. Remember that I used to make you smile.”
After a tearful goodnight and sweet dreams, I made a sign and stuck it on the mirror so that the three of us can think of you while we brush our teeth … and smile.
Your NSRC doctor mentioned that talk therapy would be good for you. “A multiple-modality approach”. She said. To date, I don’t think you have seen a psychologist. More important then that, you don’t think you have seen one yet.
I walk in to see you eating breakfast. Oh, you look so good. You are wearing one of my favorite blue shirts that make your eyes shine. A few days of beard growth adds to your look, I think. It seems like a very long time since I last saw you. Your hug felt wonderful and charged me up for the day.
As you sit on the toilet, we talk. Most of our deep conversations take place in the john these days. I ask about some of your experiences at the NSRC this past weekend. “I don’t know.” You said. “You don’t know?” I ask. “Listen, if you could make money by the amount of things that you DON”T know, then I’d be a millionaire … I’d be a f---ing millionaire!”
Your regular PT is not working today. You have fill-in PT and a new student. I asked if it were possible to video-record you walking so we could show the children. The PT team got you standing and then walking between the parallel bars to warm up. After this we went into the hallway and you walked almost halfway around the hallway loop. It is tiring work for you but you stick it out.
When you are in physio, you are of an entirely different mind set. You are upbeat and enthusiastic … almost joyful. I had thought that this was because of the wonderful PT you have working with you but today I realize that’s it the act of physio that brings out the best in you. It is not who you are working with that is important … although I think that you have been blessed with wonderful PT’s since you started this journey.
You want to show the video to the children on the weekend. You want this to be a present to Tara. “I don’t know when I can handle being a good parent to the children. They are the most important part of my life. I don’t want to breakdown.” We talk about how we will protect them form your dark moments. You start thinking like a protective parent again. “If I breakdown, then we should try to remove the children from the situation to protect them from seeing me like that.”
You have more negative thoughts. This talk drains me emotionally. You are stuck in the punishment stage. “I am planning to spend the rest of my life with you.” I said “But I’m running out of ideas of what to say to you to help you get past this difficult time.” This must be your rock bottom. You have to get past this stage.
You struggle with your thoughts and search for answers to unanswerable questions. “The more answers I have the more I can continue to move in the right direction. It takes me longer to process things. What you can figure out in seconds takes me an hour. I don’t get there as fast but I still want to get there. I will need your help ... because I want to be a whole person. I want to be of some use.”
Your OT visited. We discuss the plans to accommodate stair lifts. The insurance plan doesn’t cover much. So we will have to be creative to make these changes. You start to feel a little down with this information. You interpret the lack of insurance funds as being a good reason for you to vanish. You reason “If I wasn’t here then these costs would go away.”
The OT and I are quick to shut down where your thinking is going. “We may save on some small monetary costs but think of the huge emotional costs to your children.” Growing up without any father is a big disadvantage to any child. “Kids living with parent who have challenges grow up being more empathetic and stronger as individuals.” Your OT agrees. She knows first hand. She has a parent who had some significant health issues when she was a child.
Challenges make you stronger … not weaker.
We talk about your wheelchair. The OT is in the process of identifying a wheelchair that would be appropriate for you. Soon we will have an idea of what type of chair and the associated costs.
Next week you are going to attend a wheelchair skills group. This group meets twice a week to teach wheelchair safety tricks. It should be good because you might be able to learn to compensate for your left neglect.
After the OT left, you said with despair “I wanted out. Why didn’t you let me go?” You start circling the decision to do the surgery. I know that it is the stroke that is talking not you – but it’s still hard to hear. I know that you will get better with time but you question this.
You question your ability to parent our children. “Your intuitive sense of how to be a parent is still there.” I said. “You may have to adjust the ‘how’ part of parenthood but you still know the why, when and where parts of parenthood.”
“You will have to help me be a parent – I don’t even know what they ask me sometimes …I’ve changed.” I think that your relationship will change with the children … but it could be a better relationship. You point out “I will need more sleep and with all my crying, Quinn wants to comfort me. I could read to Quinn, go to bed early with Quinn … he would love that.”
“I’m learning as we go, Gwen … as much as the kids are. I do feel good about that but with Tara on Saturday. Not hugging her – I didn’t even know it. I am so busy thinking about myself, that I can’t even think about. “Look how lucky we are that Tara is a good communicator. She didn’t lock her feelings up like I would have and let her hurts fester. She told a grown up and shared. That is great that she can do this.
We will all learn from each other.
Next Monday is Tara’s birthday. We go to the gift shop in the VG and look at cards. One for Tara. We will celebrate her birthday on Sunday. We also get a card for your OT who is leaving for a different position on Friday. She promised you that the two of you would go out for coffee on Friday.
We get back to your room and you are stuck on bad thoughts again. Out of desperation, I say ”This is a conversation that you can have all by yourself now … why involve me … It makes me feel bad. We have been over this and over this. You must know all my answers to your worries by now … we have done this dance so many times.” Just as I was about to loose it with you, the phone rings. It’s your Mum. Saved by the bell.
Dr. Mendez’s office called her and Dr. Mendez is coming to see you tomorrow first thing in the morning! She asked if I could be with you when you meet Dr Mendez. I’m on call tonight and the children go to school and I go to work at 8AM. I don’t see how I can swing a road trip to Hailfax at 6:30 in the morning on such short notice.
Your Mum is worried that without an advocate by your side, Dr. Mendez will not be as impressed with our plea for help. I sincerely doubt that. Your Mum is a gifted letter writer. I’m sure her letter said all that needed to be said … and who better to make a plea then a mother ... even Dr. Mendez has a mother … he should know how powerful a mother’s will is.
On the way home Tara plans her birthday. “Gift cards for books, an ice cream cake, a whole day with you Mum and for dinner I want beef wraps with chocolate mousse for dessert. This is the benefit of having another planner in the family. I can just sit back and take orders, rather then have to think of everything myself.
Tonight’s bedtime call you circled the ‘I am not much of person’ thought. After a day of pulling you out of these deep dark holes, I am worn out. About all I could do was try to change to subject and talk about Dr. Mendez. “Just be yourself and tell him that you are very motivated to want more for your recovery.” I said. “Let him connect with you.”
Maybe there will be hope with Dr Mendez.
“I just want to say one more thing.” Oh no, I think, please don’t go down that path again – I don’t think I can do it. But you surprised me with what you said next. “Do me a favor please.” I hesitate, “What?” I ask. “When you brush your teeth tonight, look in the mirror and smile. Remember that I used to make you smile.”
After a tearful goodnight and sweet dreams, I made a sign and stuck it on the mirror so that the three of us can think of you while we brush our teeth … and smile.
Monday, March 1, 2010
Sunday February 28 – The Hungry Wolf Pack
This was supposed to be my morning to sleep in as long as I didn’t get any animal emergencies. I can’t sleep. I awake at 5:45am with negative thoughts circling my head. I can’t shake them. I give up on sleep and start the day. Getting up is like pressing the reset button. It allows my mind to re-boot. I leave the bad thoughts on my pillow.
When your negative thoughts circle you, I picture a scared animal being hunted by a wolf pack. The bad thoughts are the wolves and you are the prey. You are surrounded and you try to fight them off one at a time. But they keep coming. Your wolves are lean and hungry, fearless and desperate. They will do anything to force you to make a mistake. They circle you … waiting. Wearing you down to the point of exhaustion. Periodically, one wolf will make an advance and scare you so much you wish they would just get it over with and finish you off.
I feel like I’m the outsider who attempts to scare them off. I succeed in frightening some away, but I can’t get rid of them all. They keep coming. Now I am feeling surrounded by them too.
While thinking about this, I realize that distraction is what you need. Talking about your fears doesn’t seem to help. Trying to get you to think rationally about your fears doesn’t help. Maybe if you could be distracted from your fears … you could leave your fears somewhere else like I do.
I devise a plan to get you distracted from your fears. Hopefully you will get lots of phone calls and a few visits today. It will make your day pass easier. Hollis dropped by the house on the way to Halifax to visit you. As a fellow stroke survivor, he can identify with some of the feelings that you have. That should make for a good start to your day.
I try calling though out the day … lots of no answers and some busy signals. I was called into the animal hospital a few times but all easy to fix things … thankfully. I felt useful and skilled … two adjectives I haven’t felt on a weekend for a long time ... it was a nice feeling.
I went over to Juanita’s and found the children still in pajamas! My Mum is away this weekend and Juanita and Wayne have undertaken the task of soundproofing her bedroom. It was at the painting stage. I helped Juanita paint and clean Mum’s apartment. I felt somewhat useful although a little less skilled but that didn’t matter because I got to listen to CBC Radio Sunday Edition!
I haven’t listened to the radio for almost exactly six months. I love listening to CBC, especially on Sundays. Painting and listening to debates about Catholic Church in England and the role of God in sports. It transformed me to a different time in my life when I could garden or do boring mundane housework for hours on end while listening to CBC … I almost felt normal for an hour or so.
I tried to call again … busy. It turns out that your Mum, Steve and Fran called. When I did get through you sounded a little better then yesterday. You ask about the children. You felt badly that they were so upset with yesterday’s visit. “Maybe I shouldn’t spend time with them. I don’t want to hurt them … I wasn’t a father to them – too much crying.” You said.
You fear that the stroke took away your ability to be a good father … another hungry wolf fear.
You felt low earlier today. So low that you wanted to smoke. You wanted to smoke so badly that you actually asked another patient for a cigarette! Crazy as it sounds …God was looking out for you though. It turns out that the fellow patient had just decided to quit one hour before you asked her. She had no cigarettes. She had started a drug that helps curb the urge to smoke. “I can’t catch a break or get an stiff upper lip.” You said.
To follow my new plan to distract you from your misery, I read to you an email from the ultra-marathoner, Sue. She sent more encouraging words. I read the email to you. You reply very matter-of-fact like “That’s great! I want to get some training tips from her. If I can’t run fast then I’m going to run for a long time.” You were serious and sincere. I am amazed at how quickly you can swing from one state to another. Even at this sport it’s hard to keep up with you.
When your negative thoughts circle you, I picture a scared animal being hunted by a wolf pack. The bad thoughts are the wolves and you are the prey. You are surrounded and you try to fight them off one at a time. But they keep coming. Your wolves are lean and hungry, fearless and desperate. They will do anything to force you to make a mistake. They circle you … waiting. Wearing you down to the point of exhaustion. Periodically, one wolf will make an advance and scare you so much you wish they would just get it over with and finish you off.
I feel like I’m the outsider who attempts to scare them off. I succeed in frightening some away, but I can’t get rid of them all. They keep coming. Now I am feeling surrounded by them too.
While thinking about this, I realize that distraction is what you need. Talking about your fears doesn’t seem to help. Trying to get you to think rationally about your fears doesn’t help. Maybe if you could be distracted from your fears … you could leave your fears somewhere else like I do.
I devise a plan to get you distracted from your fears. Hopefully you will get lots of phone calls and a few visits today. It will make your day pass easier. Hollis dropped by the house on the way to Halifax to visit you. As a fellow stroke survivor, he can identify with some of the feelings that you have. That should make for a good start to your day.
I try calling though out the day … lots of no answers and some busy signals. I was called into the animal hospital a few times but all easy to fix things … thankfully. I felt useful and skilled … two adjectives I haven’t felt on a weekend for a long time ... it was a nice feeling.
I went over to Juanita’s and found the children still in pajamas! My Mum is away this weekend and Juanita and Wayne have undertaken the task of soundproofing her bedroom. It was at the painting stage. I helped Juanita paint and clean Mum’s apartment. I felt somewhat useful although a little less skilled but that didn’t matter because I got to listen to CBC Radio Sunday Edition!
I haven’t listened to the radio for almost exactly six months. I love listening to CBC, especially on Sundays. Painting and listening to debates about Catholic Church in England and the role of God in sports. It transformed me to a different time in my life when I could garden or do boring mundane housework for hours on end while listening to CBC … I almost felt normal for an hour or so.
I tried to call again … busy. It turns out that your Mum, Steve and Fran called. When I did get through you sounded a little better then yesterday. You ask about the children. You felt badly that they were so upset with yesterday’s visit. “Maybe I shouldn’t spend time with them. I don’t want to hurt them … I wasn’t a father to them – too much crying.” You said.
You fear that the stroke took away your ability to be a good father … another hungry wolf fear.
You felt low earlier today. So low that you wanted to smoke. You wanted to smoke so badly that you actually asked another patient for a cigarette! Crazy as it sounds …God was looking out for you though. It turns out that the fellow patient had just decided to quit one hour before you asked her. She had no cigarettes. She had started a drug that helps curb the urge to smoke. “I can’t catch a break or get an stiff upper lip.” You said.
To follow my new plan to distract you from your misery, I read to you an email from the ultra-marathoner, Sue. She sent more encouraging words. I read the email to you. You reply very matter-of-fact like “That’s great! I want to get some training tips from her. If I can’t run fast then I’m going to run for a long time.” You were serious and sincere. I am amazed at how quickly you can swing from one state to another. Even at this sport it’s hard to keep up with you.
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