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.  

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...