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.