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.
Wednesday, November 28, 2012
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...
Friday, March 23, 2012
Slow and steady
It's been just over two months since Kit has been out of the hospital. It's awesome having him at Adam's place as he is so close and we know that Adam has an eye on him. It's been getting better slowly. This is probably the longest time that Kit has been on his meds regularly and we see a big difference. He is still mostly hanging out alone in his room, watching movies and playing the odd video game, but with this past week of great weather he has been found outside with his apartment mate having a beer. We bought him a bike last week as a belated Christmas present and he has biked up for dinner and to have lunch with us a work a few times. So that's great! I think he is more chatty and happier. Unfortunately - Kit says he feels no better. Still hears voice all the time and says he generally just feels awful. I hope this is just the part of him who doesn't want to admit he feels better cuz he's a stubborn 22 year old. I hope that he really does feel a bit better...
The last two time we have visited Dr. Lewis we have bumped into a another young man with what I think has the same sort of diagnosis... some sort of psychosis anyhow. He is totally different from Kit - outgoing, talking to everyone, big smile and seems so happy. Last week he attempted to 'hypnotize' Kit into being happy. It was funny and made Kit laugh! I'm hoping that they can connect and share with each other and maybe learn from each other. For sure it's great for Kit to make some friends...
So Dave & I are doing pretty well - it's slow and steady right now and we just love him being on the injectable meds as it's only once a month. Tuesday he gets his next shot - a higher dose - hopefully to shut out those voices, but there is always the worry that he will have some side affects that because it is a long acting injection - have to be treated with other meds since you can't take this one out of his system. We will cross our fingers and deal with it as we need to. It's just so awesome that he is taking the shots... Because we don't have to think about him taking his meds everyday we can just forget about the illness between doctors visits and it's much easier to treat him normally. Which makes our relationship so much better.
Anyhow - this wasn't a very exciting blog - but for those of you wondering how things are going - you now know!!
The last two time we have visited Dr. Lewis we have bumped into a another young man with what I think has the same sort of diagnosis... some sort of psychosis anyhow. He is totally different from Kit - outgoing, talking to everyone, big smile and seems so happy. Last week he attempted to 'hypnotize' Kit into being happy. It was funny and made Kit laugh! I'm hoping that they can connect and share with each other and maybe learn from each other. For sure it's great for Kit to make some friends...
So Dave & I are doing pretty well - it's slow and steady right now and we just love him being on the injectable meds as it's only once a month. Tuesday he gets his next shot - a higher dose - hopefully to shut out those voices, but there is always the worry that he will have some side affects that because it is a long acting injection - have to be treated with other meds since you can't take this one out of his system. We will cross our fingers and deal with it as we need to. It's just so awesome that he is taking the shots... Because we don't have to think about him taking his meds everyday we can just forget about the illness between doctors visits and it's much easier to treat him normally. Which makes our relationship so much better.
Anyhow - this wasn't a very exciting blog - but for those of you wondering how things are going - you now know!!
Thursday, February 2, 2012
Patience
Patience isn't something I have a lot of. I think it must have been my mother who said to me over and over... Patience is a virtue, possess it if you can; it's seldom found in women and never found in man. So a lack of patience goes way back for me.
Dealing with mental illness demands a lot of patience. I can't fix it, control it, do anything about it. It just is. If my kid had cancer I'd be able to find the best doctor, have the surgery, radiation, chemo, whatever it takes and from the start you know pretty much what the potential outcomes might be. Cured, not cured, maybe it will come back. But it's measurable and you can take action right away. A young man I know was diagnosed with lymphoma and once the family knew what they were dealing with - and this happened relatively quickly, they could start treatment. Fast. The doctors knew exactly how to treat it. They'd seen it before, Chemo, radiation and now he's doing great and hopefully will remain cancer free forever. I know not every story is like that - and that he is a fortunate young man to have gone through it so well, but for those that don't you still at least know what it is and what's causing it and you can understand the underlying physiology of the disease. When a psychiatrist sees someone with schizophrenia - they can't just say oh - take this anti-psychotic, have a brain biopsy and we'll know what to do. They just don't know what will work. There is no treatment for schizophrenia - just for psychosis, but there's a lot more to SZ than just the psychosis.
We were at the hospital today having our weekly visit with Dr. Lewis. For the second time in three years he was actually on time. No hour wait or anything. Kit went in and I was knitting. Another mom came over and commented on my knitting and we started gently talking about mental illness. She asked - is Dr. Lewis a good doctor? I said I hope so!! Actually we are pretty sure he is as so many other doctors and mental health care professionals have spoken highly of him, but of course we don't know anyone else who has been to him. Not something people talk about!! Not like you go to a cocktail party and ask anyone if they know a great psychiatrist. Although you might ask around for a great orthopedic surgeon for your knee surgery!
When I went in at the end of Kit's visit to give my input into how he's doing this week I mentioned to him that Kit spends most of his time in bed. He was surprised - I guess Kit told him he's not doing much - but he is really not doing anything. For the past couple of visits Dr. Lewis has been encouraging Kit to try Lithium to see if it will help his depressive symptoms. Each time Kit says no - he doesn't believe in any of the meds, blah, blah blah... same old story. And inside I'm screaming - Just try it!!! Try anything! Try to beat this stupid disease, don't just sit there all day!!! Ah - no patience... I want it to work RIGHT NOW. But today Dr. Lewis told me Kit has decided to try the Lithium. Wow. He had the patience to just keep giving him the idea each week, telling him that it might help, and let him come to the decision on his own time. I could learn something here...
Driving back from the appointment we stopped for a coffee - I was bursting inside with happiness that he is willing to try the lithium. I hope it gives him some good feelings back, some desire to do more than hang in bed all day. But maybe it won't. Tomorrow morning he goes for some baseline blood work so that they can monitor the side affects of the lithium before he starts tomorrow night. Then I'll need to be patient and see what happens.
Dealing with mental illness demands a lot of patience. I can't fix it, control it, do anything about it. It just is. If my kid had cancer I'd be able to find the best doctor, have the surgery, radiation, chemo, whatever it takes and from the start you know pretty much what the potential outcomes might be. Cured, not cured, maybe it will come back. But it's measurable and you can take action right away. A young man I know was diagnosed with lymphoma and once the family knew what they were dealing with - and this happened relatively quickly, they could start treatment. Fast. The doctors knew exactly how to treat it. They'd seen it before, Chemo, radiation and now he's doing great and hopefully will remain cancer free forever. I know not every story is like that - and that he is a fortunate young man to have gone through it so well, but for those that don't you still at least know what it is and what's causing it and you can understand the underlying physiology of the disease. When a psychiatrist sees someone with schizophrenia - they can't just say oh - take this anti-psychotic, have a brain biopsy and we'll know what to do. They just don't know what will work. There is no treatment for schizophrenia - just for psychosis, but there's a lot more to SZ than just the psychosis.
We were at the hospital today having our weekly visit with Dr. Lewis. For the second time in three years he was actually on time. No hour wait or anything. Kit went in and I was knitting. Another mom came over and commented on my knitting and we started gently talking about mental illness. She asked - is Dr. Lewis a good doctor? I said I hope so!! Actually we are pretty sure he is as so many other doctors and mental health care professionals have spoken highly of him, but of course we don't know anyone else who has been to him. Not something people talk about!! Not like you go to a cocktail party and ask anyone if they know a great psychiatrist. Although you might ask around for a great orthopedic surgeon for your knee surgery!
When I went in at the end of Kit's visit to give my input into how he's doing this week I mentioned to him that Kit spends most of his time in bed. He was surprised - I guess Kit told him he's not doing much - but he is really not doing anything. For the past couple of visits Dr. Lewis has been encouraging Kit to try Lithium to see if it will help his depressive symptoms. Each time Kit says no - he doesn't believe in any of the meds, blah, blah blah... same old story. And inside I'm screaming - Just try it!!! Try anything! Try to beat this stupid disease, don't just sit there all day!!! Ah - no patience... I want it to work RIGHT NOW. But today Dr. Lewis told me Kit has decided to try the Lithium. Wow. He had the patience to just keep giving him the idea each week, telling him that it might help, and let him come to the decision on his own time. I could learn something here...
Driving back from the appointment we stopped for a coffee - I was bursting inside with happiness that he is willing to try the lithium. I hope it gives him some good feelings back, some desire to do more than hang in bed all day. But maybe it won't. Tomorrow morning he goes for some baseline blood work so that they can monitor the side affects of the lithium before he starts tomorrow night. Then I'll need to be patient and see what happens.
Wednesday, February 1, 2012
Independence
Well things are kind of quiet right now. Kit is still living in Adam's basement and hopefully that will last quite a while. This past week Kit and I have spent some time in the Ontario Works and ODSP (Ontario Disability Support Plan) offices. Kit applied for ODSP back in September but it takes a long time. More than six months evidently. In the meantime Kit has been getting a 'street allowance' which Ontario Works now calls a 'basic needs allowance' which is $227 a month. Now that he has accommodation he has applied for a rent allowance and was approved in four days. Very efficient. Ontario Works will now pay most of his rent directly to Adam and Kit will still get his basic needs cheque which will be closer to $200. Not bad considering we help him out if needed. Then when his ODSP kicks in he'll get more for each expense.
I have never been to the Ontario Work office. We arrived last Monday at about 11:15 and there were only about three people there. They looked like scruffy guys you'd see on the street, and like us were waiting for an appointment with their worker. We were told that Kit's was out for lunch and to come back at 1:30. Long lunch! Lucky city workers! So we went out for lunch to Il Fornello across from Metro Hall and enjoyed a delicious bite to eat and returned for 1:30. There were a few more people there and by the time 2:00 rolled around it was packed. Anyone who doesn't have their welfare cheques mailed directly comes to pick up the cheques at 2:00. A security guard appeared and all the customers (90% men) were chatting with each other as if this is a monthly get together. It was quite interesting listening to them catch up on their activities for the past weeks and their struggles with finding work and difficulties with their families. Some stories were quite funny and others weren't so happy. One young man walked in - looking very well kept - could have been working there, but wasn't. He asked for his cheque and they told him he had the wrong day and he totally blew up swearing at the people behind the glass, and saying he was sick of being picked on as everyone else could get their money but him. He was sick of the conspiracy against him. Of course I have no right to diagnose, but he did sound quite like Kit at his worst. I felt so sorry for him since he was so sure that he was told to come that day, and he felt like everyone was against him. He said he promised he wouldn't be spending the money on meth like everyone else - so just give it to him. The ladies behind the glass handled him so well, very kind, gentle and respectful despite his aggressiveness. The security guard was called and the young man was removed. Hopefully his cheque was available the next day. And this happens every day. All these people, out of work, maybe mentally, physically or emotionally ill, living off of $227 a month. I can go through that in a few days without thinking about it... How to stretch that out for one month must be a struggle. No wonder so many work under the table - who would admit to earning another couple of hundred dollars if you were to lose that?
As for Kit - he continues to hear voices all the time, and to believe we aren't really real people. He can't work yet as he is too distracted and the meds are still making him so tired and lethargic. He spends most of the day sleeping with occasional breaks to go out and have a cigarette. He is learning some cooking skills and has been barbequeing most of his dinners. Had a great steak dinner with Adam the other night!
Thanks everyone for your support through all of this! It means the world to me!
Monday, January 16, 2012
Stigma
Part of the reason I'm writing this blog is to share our knowledge of mental illness with our friends and anyone who wants to read this... The more educated the public becomes, the less stigma there is. Stigma refers to negative attitudes or beliefs that are held about people who are perceived as different.
People who have been diagnosed with a mental illness are all likely to experience stigma. Public attitudes and beliefs which are often based on fear and misunderstanding, stereotype individuals with mental illness, exposing them to prejudice and discrimination. Stigma infects every issue surrounding mental illness, often with worse consequences than the illness itself. Many people who suffer from mental health conditions won't seek help because of the stigma. In 2001, the World Health Organization declared stigma to be the 'single most important barrier to overcome in the community"
Stigma and discrimination are different. Stigma is the beliefs, discrimination the actions. There is no legal action against stigma, only discrimination. There is also self-stigma where one feels self-loathing or embarrassment as a result of their differences, often because of the negative perceptions around them.
I know when we first found out that Kit had schizophrenia we were totally shocked and scared. I had no knowledge of mental illness at all. Even having completed 3/4 of a nursing diploma - I never learned very much about it. I thought maybe it was like the book Sybil with the girl who has multiple personalities. I thought it meant aggression, and something not treatable. But after poring over information given to us by the hospital and the Ontario Schizophrenia Society we began to learn more. I think what really made us understand was spending time at the hospital with other patients. You know they all have an illness, with some it's more obvious than others, and some people you just can't figure out what brings them to the hospital. They seem mentally and physically healthy. Mental illness presents in many forms and every patient is different. Now when I see someone on the street I try to understand that they are just struggling with something like Kit. They are somebody's son or brother, sister or mother. It is so hard to support someone with mental illness who isn't ready to help themselves, so many people end up having a rough life.
Kit has been out of the hospital now for eleven days. He is living in his brother's two bedroom basement apartment with another guy. He is really happy to have his own space and some independence. Adam and his girlfriend live upstairs. We were away on holiday when he was discharged so Adam thankfully took him in and set him up. Kit wanted to leave the hospital, and although he still believes he is in a virtual reality and nothing is really real, he is not at risk of harming himself or others so he gets discharged. Our stipulation is that he stay on injectable medication so that we know he is taking it and we don't have to be the pill police. He HATES the needles. They are big, the volume of medicine is large and it really hurts. Besides that he has to go up to the psych ward with the nurse, go to a special room, drop his pants and get a needle in the butt. How humiliating. He told us last week that he thinks the needle will kill him - hit an artery or something. And he still believes it's just 'virtual' medicine. So why would he want to take it? And he has self-stigma. He said he doesn't want to be the one with schizophrenia for the rest of his life. (at least that was a spark of recognition that he has an illness - but still sad.)
Good news that I have a friend who told me about another drug similar to what he is taking that can be taken in the ARM!!! Smaller needle and less volume. Now why didn't the hospital suggest this? When he has repeatedly said how much he hates the needle in the butt? Why don't they try to work with him?? Isn't it the most important thing to keep him on his meds? ARGHH! Anyways - I faxed the info to his doc today and hopefully tomorrow he will get the shot in the arm. And hopefully it's much less painful. I'll let you know...
If you have any questions - please don't hesitate to ask!
People who have been diagnosed with a mental illness are all likely to experience stigma. Public attitudes and beliefs which are often based on fear and misunderstanding, stereotype individuals with mental illness, exposing them to prejudice and discrimination. Stigma infects every issue surrounding mental illness, often with worse consequences than the illness itself. Many people who suffer from mental health conditions won't seek help because of the stigma. In 2001, the World Health Organization declared stigma to be the 'single most important barrier to overcome in the community"
Stigma and discrimination are different. Stigma is the beliefs, discrimination the actions. There is no legal action against stigma, only discrimination. There is also self-stigma where one feels self-loathing or embarrassment as a result of their differences, often because of the negative perceptions around them.
I know when we first found out that Kit had schizophrenia we were totally shocked and scared. I had no knowledge of mental illness at all. Even having completed 3/4 of a nursing diploma - I never learned very much about it. I thought maybe it was like the book Sybil with the girl who has multiple personalities. I thought it meant aggression, and something not treatable. But after poring over information given to us by the hospital and the Ontario Schizophrenia Society we began to learn more. I think what really made us understand was spending time at the hospital with other patients. You know they all have an illness, with some it's more obvious than others, and some people you just can't figure out what brings them to the hospital. They seem mentally and physically healthy. Mental illness presents in many forms and every patient is different. Now when I see someone on the street I try to understand that they are just struggling with something like Kit. They are somebody's son or brother, sister or mother. It is so hard to support someone with mental illness who isn't ready to help themselves, so many people end up having a rough life.
Kit has been out of the hospital now for eleven days. He is living in his brother's two bedroom basement apartment with another guy. He is really happy to have his own space and some independence. Adam and his girlfriend live upstairs. We were away on holiday when he was discharged so Adam thankfully took him in and set him up. Kit wanted to leave the hospital, and although he still believes he is in a virtual reality and nothing is really real, he is not at risk of harming himself or others so he gets discharged. Our stipulation is that he stay on injectable medication so that we know he is taking it and we don't have to be the pill police. He HATES the needles. They are big, the volume of medicine is large and it really hurts. Besides that he has to go up to the psych ward with the nurse, go to a special room, drop his pants and get a needle in the butt. How humiliating. He told us last week that he thinks the needle will kill him - hit an artery or something. And he still believes it's just 'virtual' medicine. So why would he want to take it? And he has self-stigma. He said he doesn't want to be the one with schizophrenia for the rest of his life. (at least that was a spark of recognition that he has an illness - but still sad.)
Good news that I have a friend who told me about another drug similar to what he is taking that can be taken in the ARM!!! Smaller needle and less volume. Now why didn't the hospital suggest this? When he has repeatedly said how much he hates the needle in the butt? Why don't they try to work with him?? Isn't it the most important thing to keep him on his meds? ARGHH! Anyways - I faxed the info to his doc today and hopefully tomorrow he will get the shot in the arm. And hopefully it's much less painful. I'll let you know...
If you have any questions - please don't hesitate to ask!
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