Well it's been four weeks and almost three days since Kit died. I'm not sure where to start writing... My last post was about how things had been going so well. Kit was living on his own for the past 14 months in his brother's basement doing what Kit does - smoke, eat and play video games. He was still hearing the voices, but he said the meds were keeping them a little quieter. He was certainly so much better than he was in December 2011 when he had his last hospital admission. He never complained about getting his monthly shot and would call us the night before to remind us... That was definitely a first. His daily life was functional, not great, but he'd get up, smoke, sleep a bit more, eat spaghetti, shwarma or McD's for lunch, smoke some more, play video games or spend time on his computer. For dinner he had fish sticks and peas. Yup - every night. Well of course we had him over or out for dinner at least once a week, but he seemed to be doing quite well. Other than the fact that he said he still heard voices all the time and his delusion of living in a world that didn't exist he was easy to get along with.
But we were wrong. I don't know what he was thinking when he jumped off the Leaside Bridge at 6 am on Saturday, March 9th. It could have been many things... Life is so terrible and not worth living and I'm helpless and hopeless... or 'The Controller' has a reward for me that I get to receive upon jumping... or maybe he was psychotic from the five or more ritalin he snorted sometime between Friday night at 8 and Saturday morning and he thought he could fly... We'll never know, and I guess it doesn't really matter. His psychiatrist today said maybe he felt that because it was a virtual world he didn't think anything would happen when he jumped - that it would be like Groundhog Day and he'd just wake up the next morning and it would be a new day. I just hope he knew we loved him which I'm sure he did.
I was with him the night before he died. I went over to bring him his favourite book - Ender's Game - and his weekly does of Ritalin. I had to give him extra as my daughter and I were going to go to St. Lucia on the 11th. He was a bit shaky, but really the same as usual. I offered him a beer, but he said no, then changed his mind and had one. We sat upstairs with his brother and his brother's girlfriend. We chatted, he drank his beer, went out for a smoke and then went downstairs. I went down after a bit and he was sitting on his bed writing in a notebook. I told him I loved him, I'd be over tomorrow to take him out for lunch and he said he loved me too and I hugged him goodbye. I don't think he was thinking then that we wouldn't see each other ever again.
I do know one thing now. He isn't hearing the voices anymore. Nothing is tearing him up inside and telling him he is worthless anymore. He's at peace. Gone from this world.
Monday, April 8, 2013
Obituary
CHRISTOPHER (KIT) SKELLY
April 21, 1989 – March 9, 2013
It is with deep sorrow
that we announce Kit’s tragic death on March 9, 2013 after a tortuous battle
with schizophrenia. Kit was the very,
very much loved son of David & Lesley (nee Adamson) Skelly and most
awesome brother to Adam and Robyn. He
was so loved by his large extended family and will be greatly missed by his many
aunts and uncles and 23 cousins. Kit
will forever be remembered as a gentle soul who loved music. An accomplished pianist, Kit loved his guitar and was the
lead in two high school musicals. He
was also a great writer, winning a national award for writing when he was
nine. There was never a video game that
Kit could not master. From the age of
seven Kit wanted to be a doctor and spent two years at Guelph University
studying biology before his illness overwhelmed him.
Kit was a great friend
who generously shared his clever sense of humour and his love. His friends were very important to him as he
grew up. He touched so many but will be
especially missed by Brendan, Eddie, Ryan and Seung Woo.
We want to thank our
incredible families, our amazing friends, Dr. Ralph Lewis and the staff at
Sunnybrook’s psychiatric unit. Also a
big thank you to Covenant House who sheltered him during some of his most
difficult times. In lieu of flowers
donations will be gratefully accepted by Covenant House and the Schizophrenia
Society of Ontario.
Wednesday, November 28, 2012
Calm seas
Well it has been ages since I've written... Life has been a bit busy, and then it's not and just when you think it's all calm you get tricked and you're on rough seas again. Not that the seas have been too rough lately, just a few swells and some tricky waves to avoid. Fortunately nothing to do with Kit. His seas have been calm.
The last time I wrote I had been to some advisory board meetings and from those I have been asked to work with Janssen Pharmaceuticals on a media campaign focusing on caregivers. It's not about their drug (although I guess ultimately they like me because we like these shots) but it's really about what it's like to be the care giver for a loved one with schizophrenia. It's been quite fun - I was interviewed on a London, ON radio station, then was on Rogers TV. Both were a stretch for me - I'm not a public speaker, but since I totally believe in making sure care givers get more support, I guess I felt I could speak to this. The radio one was easy - they edited the whole thing and brought it down to about a minute. But being on live TV was a bit nerve wracking. I was on with a Dr. Ruth Baruch who is a psychiatrist in Toronto. She talked about the medical side of the illness and the importance of family in recovery and I told some of my story. I really enjoyed doing it with Ruth. We were supposed to be on CP24 at noon yesterday but the Grey Cup Parade had us postponed to a later date. The great thing about all of it is that the caregiver survey was done by Janssen but we are not expected or even encouraged to speak at all about medication. I would feel a bit uncomfortable if I was promoting their medication - as I know that each person reacts differently to each medication, and that for some people medication isn't the only answer. There are just so many different ways of approaching mental illness - it's very personal.
The exciting this for me is I have been invited to Banff by Janssen to speak to their sales reps about caring for someone with SZ. They are flying me out on Monday and I speak on Tuesday. It's just to about 40 sales persons, and in small groups of eight or so at a time. It should be really interesting to see their perception of the illness and for them to hear from someone who is living with someone who has it. I'm assuming some of them will have some idea about what it's like, and others won't. Anyhow - I'm kind of excited to have a paid vacation!! This will be the first time I will have traveled by myself in many years. I have a good friend in Calgary who is going to come up to Banff to spend a day after with me. That will be so lovely. Then later in December they have asked me to come speak to their annual meeting of 400 people... YIKES!!
For those of you wondering how my boy is doing - he's good. Has been working for us at the shop a bit here and there helping with inventory. He's not doing much else but he seems to be okay. One year now of renting Adam's basement. Time just flies by.
The last time I wrote I had been to some advisory board meetings and from those I have been asked to work with Janssen Pharmaceuticals on a media campaign focusing on caregivers. It's not about their drug (although I guess ultimately they like me because we like these shots) but it's really about what it's like to be the care giver for a loved one with schizophrenia. It's been quite fun - I was interviewed on a London, ON radio station, then was on Rogers TV. Both were a stretch for me - I'm not a public speaker, but since I totally believe in making sure care givers get more support, I guess I felt I could speak to this. The radio one was easy - they edited the whole thing and brought it down to about a minute. But being on live TV was a bit nerve wracking. I was on with a Dr. Ruth Baruch who is a psychiatrist in Toronto. She talked about the medical side of the illness and the importance of family in recovery and I told some of my story. I really enjoyed doing it with Ruth. We were supposed to be on CP24 at noon yesterday but the Grey Cup Parade had us postponed to a later date. The great thing about all of it is that the caregiver survey was done by Janssen but we are not expected or even encouraged to speak at all about medication. I would feel a bit uncomfortable if I was promoting their medication - as I know that each person reacts differently to each medication, and that for some people medication isn't the only answer. There are just so many different ways of approaching mental illness - it's very personal.
The exciting this for me is I have been invited to Banff by Janssen to speak to their sales reps about caring for someone with SZ. They are flying me out on Monday and I speak on Tuesday. It's just to about 40 sales persons, and in small groups of eight or so at a time. It should be really interesting to see their perception of the illness and for them to hear from someone who is living with someone who has it. I'm assuming some of them will have some idea about what it's like, and others won't. Anyhow - I'm kind of excited to have a paid vacation!! This will be the first time I will have traveled by myself in many years. I have a good friend in Calgary who is going to come up to Banff to spend a day after with me. That will be so lovely. Then later in December they have asked me to come speak to their annual meeting of 400 people... YIKES!!
For those of you wondering how my boy is doing - he's good. Has been working for us at the shop a bit here and there helping with inventory. He's not doing much else but he seems to be okay. One year now of renting Adam's basement. Time just flies by.
Wednesday, June 20, 2012
Caregivers
Recently I have been to two advisory committee meetings. The first one was with Janssen Pharmaceuticals who is looking for a way to support caregivers. It's great that they are going to spend some money to help those that pay for their drugs. We met at the Sutton Place Hotel and a bunch of caregivers were able to give them feedback to what we needed. The outcome was obvious. More info, more support, more... It will be interesting to see where they go from there.
Today I was at the Royal York Hotel with two people from the CMHC (Canadian Mental Health Commission) who are putting together some guidelines for Family Caregiver Services in Canada. First we met just with six of us caregivers, shared our stories, all so sad, and talked about what needs we had that were met, (Very Few) and those that weren't. (Most) There was a sister who has been helping her mom take care of her bipolar brother, a mom of a son who suffered psychosis and then committed suicide, a woman who is just six months into her journey with her 20 year old son, a Chinese woman with an older daughter with bipolar and me. (Did you know that the mental illness stigma is even worse in the Chinese culture - so she can't even count on her family for support?) The stories were all different and all the same. We knew nothing, still know so little and there are so few places to find what we need. Then in the last two hours we were joined by some Service Providers and some consumers. A 43 year old wonderful man who is trying so hard to stay well and care for his two children. A young woman with a multitude of diagnoses who is trying to put her life back on track. Brave people to share their experiences and I for one am so grateful for their openness and honesty.
There was a great discussion about what services were needed for caregivers and what caregivers actually take care of. Someone brought up tax credits and how if you adopt a special needs child you get some tax breaks but you don't get any tax breaks for being the caregiver of a mentally disabled adult. But we support them in every way imaginable. shopping, personal care, housekeeping, motivation, laundry, diet & nutrition counselor, medication support, and the list goes on. I can't imagine what life would be like if I were a single parent on a low income. You'd be stretched to the max in every way. The service providers - SSO, FAME and Family Outreach and Response offered wonderful examples of how they help the families and suggested some great ideas that the CMHC can use.
At the end of the day I drove the man who has schizo-affective disorder home. (lives very close to my neighbourhood!) I got a bit lost downtown so we had a lot of time together in the car. I'd like him to be a peer support for Kit as he has tons of insight. I asked him if he still heard voices and he said 'it's normal to hear voices - those that don't are crazy!" He didn't really mean it, but he has managed to gain control over his pyschosis and knows the importance of taking his meds, getting exercise and having a good diet. He trains his dog, cares for his two children part time, he's a peer support worker and he is a wonderful guy. When I let him out I told him I was sorry it took way longer than if he had taken the subway and he replied that he was so happy to talk to someone who didn't care if he had a mental illness, and that actually wanted to hear more about it. He was so happy to share and had a really positive feeling about Kit. I can't wait till they meet.
It's great that the CMHC is doing this. It's great that Janssen is thinking about it. We really need to be out there to help our neighbours and friends who are caregivers. Whether it's for a mentally ill child, or an aging parent, as a society we have to be there for each other.
Today I was at the Royal York Hotel with two people from the CMHC (Canadian Mental Health Commission) who are putting together some guidelines for Family Caregiver Services in Canada. First we met just with six of us caregivers, shared our stories, all so sad, and talked about what needs we had that were met, (Very Few) and those that weren't. (Most) There was a sister who has been helping her mom take care of her bipolar brother, a mom of a son who suffered psychosis and then committed suicide, a woman who is just six months into her journey with her 20 year old son, a Chinese woman with an older daughter with bipolar and me. (Did you know that the mental illness stigma is even worse in the Chinese culture - so she can't even count on her family for support?) The stories were all different and all the same. We knew nothing, still know so little and there are so few places to find what we need. Then in the last two hours we were joined by some Service Providers and some consumers. A 43 year old wonderful man who is trying so hard to stay well and care for his two children. A young woman with a multitude of diagnoses who is trying to put her life back on track. Brave people to share their experiences and I for one am so grateful for their openness and honesty.
There was a great discussion about what services were needed for caregivers and what caregivers actually take care of. Someone brought up tax credits and how if you adopt a special needs child you get some tax breaks but you don't get any tax breaks for being the caregiver of a mentally disabled adult. But we support them in every way imaginable. shopping, personal care, housekeeping, motivation, laundry, diet & nutrition counselor, medication support, and the list goes on. I can't imagine what life would be like if I were a single parent on a low income. You'd be stretched to the max in every way. The service providers - SSO, FAME and Family Outreach and Response offered wonderful examples of how they help the families and suggested some great ideas that the CMHC can use.
At the end of the day I drove the man who has schizo-affective disorder home. (lives very close to my neighbourhood!) I got a bit lost downtown so we had a lot of time together in the car. I'd like him to be a peer support for Kit as he has tons of insight. I asked him if he still heard voices and he said 'it's normal to hear voices - those that don't are crazy!" He didn't really mean it, but he has managed to gain control over his pyschosis and knows the importance of taking his meds, getting exercise and having a good diet. He trains his dog, cares for his two children part time, he's a peer support worker and he is a wonderful guy. When I let him out I told him I was sorry it took way longer than if he had taken the subway and he replied that he was so happy to talk to someone who didn't care if he had a mental illness, and that actually wanted to hear more about it. He was so happy to share and had a really positive feeling about Kit. I can't wait till they meet.
It's great that the CMHC is doing this. It's great that Janssen is thinking about it. We really need to be out there to help our neighbours and friends who are caregivers. Whether it's for a mentally ill child, or an aging parent, as a society we have to be there for each other.
Tuesday, June 12, 2012
Publicity...
It's been quite an amazing four weeks. The East York Mirror wrote an article about this blog and then the Toronto Star did a series on Mental Health in which we were profiled. Telling our story to these journalists was sometimes hard but mostly really rewarding as Jennifer from The Star already knew quite a bit about mental illness and had a friend who was very ill so she sort of understood how we were feeling. She asked if Kit would be interviewed and he said he didn't want to be or even to have her come and take his picture with us. We were pretty sure that he wouldn't even hear about either article - although he certainly knew we were being interviewed by The Star - but he did. He called us up and said a friend had texted him that he was in the paper. He was a bit mad, said he didn't want his name used, but in the end he realized it wasn't something to worry about. I don't think he has even read the article yet. And now it's non-issue, it's old news.
Part of the fall-out of the article was that I received many phone calls from strangers, family, old friends, recent friends and people I had met vaguely years and years ago. Everyone was offering their support and saying how brave we are to speak about it, but I don't think I'm brave, just open. I don't think it's anything to be ashamed of, and I feel so badly for those people who do feel that. It must be so hard to deal with a loved one with schizophrenia and be ashamed of them or yourself at the same time. Kind of like in the old days if you had leprosy. But this affects so many, and through no fault of anyone, and each person needs to be able to talk about it openly and to share their story to be supported.
One man who called me was the CA for the doctor I worked for before I had kids. He wanted to share with me his story of being bipolar and misdiagnosed for many years, being on pharmaceuticals of many types and then hearing about a Dr. Abram Hoffer who treats people with schizophrenia (and other mental illnesses) with 'orthomolecular medicine' and he claims Dr. Hoffer saved his life. I know nothing really about it other than he gives his patients fairly high doses of vitamins B3 (niacin) and C. I can't find much against it on the web, but lots of stuff about how it does work. I am really quite pro MD's and medicine and pharma, but I know there is a lot to be said for holistic and naturopathic healing. I just wish the two could work together. I talk to the psychiatrist about it and he says it's 'hocus pocus' and then says he shouldn't be so against it as he knows nothing about it. And the guy who told me about the vitamin therapy says no one does well on antipsychotics. Arghh. They are both wrong. But why can't they be open to each other so that the patients and care givers can have that knowledge too? Why doesn't my psychiatrist know about Niacin and Vitamin C? He should know - even if he doesn't believe in it or has proof it doesn't work. It takes so much energy to try to figure this out. And money - since I'll have to pay to see the naturopath. And will they work together? I'm not willing to have Kit off his antipsychotics as we are starting to see an improvement.
If anyone reading this has used Dr. Hoffer's methods - please share...
Part of the fall-out of the article was that I received many phone calls from strangers, family, old friends, recent friends and people I had met vaguely years and years ago. Everyone was offering their support and saying how brave we are to speak about it, but I don't think I'm brave, just open. I don't think it's anything to be ashamed of, and I feel so badly for those people who do feel that. It must be so hard to deal with a loved one with schizophrenia and be ashamed of them or yourself at the same time. Kind of like in the old days if you had leprosy. But this affects so many, and through no fault of anyone, and each person needs to be able to talk about it openly and to share their story to be supported.
One man who called me was the CA for the doctor I worked for before I had kids. He wanted to share with me his story of being bipolar and misdiagnosed for many years, being on pharmaceuticals of many types and then hearing about a Dr. Abram Hoffer who treats people with schizophrenia (and other mental illnesses) with 'orthomolecular medicine' and he claims Dr. Hoffer saved his life. I know nothing really about it other than he gives his patients fairly high doses of vitamins B3 (niacin) and C. I can't find much against it on the web, but lots of stuff about how it does work. I am really quite pro MD's and medicine and pharma, but I know there is a lot to be said for holistic and naturopathic healing. I just wish the two could work together. I talk to the psychiatrist about it and he says it's 'hocus pocus' and then says he shouldn't be so against it as he knows nothing about it. And the guy who told me about the vitamin therapy says no one does well on antipsychotics. Arghh. They are both wrong. But why can't they be open to each other so that the patients and care givers can have that knowledge too? Why doesn't my psychiatrist know about Niacin and Vitamin C? He should know - even if he doesn't believe in it or has proof it doesn't work. It takes so much energy to try to figure this out. And money - since I'll have to pay to see the naturopath. And will they work together? I'm not willing to have Kit off his antipsychotics as we are starting to see an improvement.
If anyone reading this has used Dr. Hoffer's methods - please share...
Wednesday, April 18, 2012
Hero
I think my last entry was a bit whiny... Sorry about that! I was just having a 'poor me' moment. Thank you all for your kind and understanding comments. Kit is doing so much better than he was five months ago. He's not on the street, he's living on his own, being fairly independent and he's doing okay. Yesterday I took him to Hero burger for lunch. It was great, we laughed and chatted and had a great hour together. His brother has been away for a while so Kit's been hanging out upstairs watching his TV and we cleaned up together and it was good. He really is such an awesome kid and he's taught me so much about life and myself.
Sunday, April 15, 2012
I WANT MORE
Well Kit has been on these great injectable drugs now for five months. His dose was increased two weeks ago. He's better, but he's not the boy we used to have. So many people tell us - wow what a great improvement... I know it is, but I WANT MORE. I want him to want to do something, to be active, to want to be with people, to enjoy his friends. He's had some great moments - over Easter he went to his friend Edward's house for a barbeque and they all had a great time. Reminisced, ate, laughed. I know that's good, but I WANT MORE. The day after I asked him how his weekend was and he said he had fun with his friends but he couldn't see the point in getting together with them. At Easter dinner with the whole family (very chaotic and noisy and busy) he pretty much withdrew - which is to be expected but... I WANT MORE. On Friday he said he would come for a walk with me and then watch Robyn ride, but Saturday morning he just wouldn't budge from his house. He did come over for dinner - and he biked over - yup - it's all good, but really...
I want his brain to work again like it used to. I want him to be fine. I want the F-ing voices to GO AWAY!!! I don't want to think of him spending the rest of his life just sitting in his room playing video games. Did I mention he bought himself an X-box 360 with his ODSP money? Well he did, that's a good thing cuz if he has lots of possessions then it's harder to move back on the street where you can't own anything... But what parent wants their kid to own a video console so they don't choose to be living in a shelter. ARGH! Yesterday he said he's playing it for about 12 hours a day. I don't know - is that good? bad? I have no idea.
On the other hand - these meds are such a dream because we don't have to worry about them in between shots. So far he hasn't had any side affects other than he's gained some weight and is lethargic. Lethargic - that's an understatement. He's finally getting sick of eating Ramen noodles so perhaps he will find another meal to eat... hopefully healthier. His birthday is next week - he wants a new amp for his guitar (yup - that's good too and we'll get it for him) and his Aunties will buy him stuff to cook with. More possessions... 23 years old. Wow - remember those years between 19 and 25? weren't they awesome for us? Too bad for Kit and all the others that mental illness strikes right when life should be the best. Sucks eh?
Anyhow - thanks for reading and for your support. We'd never get through this without our friends...
I want his brain to work again like it used to. I want him to be fine. I want the F-ing voices to GO AWAY!!! I don't want to think of him spending the rest of his life just sitting in his room playing video games. Did I mention he bought himself an X-box 360 with his ODSP money? Well he did, that's a good thing cuz if he has lots of possessions then it's harder to move back on the street where you can't own anything... But what parent wants their kid to own a video console so they don't choose to be living in a shelter. ARGH! Yesterday he said he's playing it for about 12 hours a day. I don't know - is that good? bad? I have no idea.
On the other hand - these meds are such a dream because we don't have to worry about them in between shots. So far he hasn't had any side affects other than he's gained some weight and is lethargic. Lethargic - that's an understatement. He's finally getting sick of eating Ramen noodles so perhaps he will find another meal to eat... hopefully healthier. His birthday is next week - he wants a new amp for his guitar (yup - that's good too and we'll get it for him) and his Aunties will buy him stuff to cook with. More possessions... 23 years old. Wow - remember those years between 19 and 25? weren't they awesome for us? Too bad for Kit and all the others that mental illness strikes right when life should be the best. Sucks eh?
Anyhow - thanks for reading and for your support. We'd never get through this without our friends...
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