Recruitment call for Family/Friend Caregiver Survey- health condition, physical or mental disability, substance use/addiction condition

Betty, thanks for the link. It was interesting survey to complete.

Any comments Goldy? Was it too long. Was it confusing. Was there anything missing?

Indeed long survey but most of the questions were relevant. Some questions were repetitive.

I always question the value. Any activity that we invest in must touch quality of human life. It is my wish to invest my time in efforts that has a potential to touch quality of human life.

Thanks Goldy. That is what this formalized survey is hopefully all about. We all know that data drives policy and funding so I have learned over my years as a lived experience/family advocate that some of the 'dry' and seemingly repetitive governance, research and date collection is one of those 'things' that I must embrace as an advocate.

My wish is the same as yours.....in the end it must have a faster and relevant pathway to improving quality of life.

Betty-Lou Kristy

Lived Experience/‘Family’ Advocate- Mental Health, Addiction, Trauma & Bereavement

Hi Betty,

I had hoped I could contribute to this information data but I suppose since my son was shot/died by police that this eliminates my perspective as it has been almost eight years since this happened.  I continue to seek ways to change policing for those in crisis and with mental illness so we can help and not kill our loved ones.  We are hosting a Memorial for Ontarians Killed by Police at Queens Park on Wed. Oct 7th.  We will be presenting a petition with MPP Jagmeet Singh to change the Police Act to include testing of all police for illegal drugs and steroids to the Legislative Assembly.  We are getting a lot of support for this action which may save lives.

I would like to be kept up to date on any surveys done to enhance police empathy for the mentally ill in our province.  

We keep trying to make positive change....Affected Families of Police Homicide.

Hi Betty, I like to clarify that I am not against investing in research. I absolutely in agreement that data drives changes. My background is science and I have worked with scientists all my career. I use my intellect to solve issues in personal and professional life. But certain events in my own life taught me that intellect itself is not sufficient to get through challenges of this life. I started learning more about "emotions". I learned life is not about "right and wrong". If somehow we can bring changes to our education system and teach our kids empathy and compassion, this world will change. Just imagine people in power and control making decisions based on intellect and emotions, what kind of world that would be! My life will be worth if I can contribute to this dream.

We need a lot more research to learn neuro circuitry. Here is a clip from a neuroscientist Dr. Mobley, check it out : 

https://www.youtube.com/watch?v=-XNOsvQBDps

Hi Karyn:

So good to hear from you!  I wanted to fill it out too but because my son died almost 14 years ago I can not. There is a strict criteria for within the last 12 months. That is because the Ministry is trying to collect the data for a  current 'snapshot'.

There were many other dynamics that we all wanted to capture (including those of us affected previously outside of that time frame) but the survey was even longer than it is now and it had to be shortened.

The one very promising thing Karyn is that this family/friends care- giving survey is now inclusive of mental health and substance use.

Finally, we as parents, family, loved ones, significant others are being recognized as care-givers to our loved ones with mental health and/or substance use issues.

I know we still have a long way to go but the determination of parent advocates like you and I who have lost our children (and those who are struggling to keep their children/loved ones alive) in partnership with systems and community will indeed get us there one day.

I often think of you Karyn and particularly at times when yet another person struggling with mental health and/or substance use is shot by police because I can only imagine how horribly triggering it must be for you.

Betty-Lou Kristy

Lived Experience/‘Family’ Advocate- Mental Health, Addiction, Trauma & Bereavement

Hi Goldy;

I thought your background was science and I absolutely think you are amazing because it is obvious how passionate you are about combining the intellect with compassion etc.  I really admire that perfect combination because it is the cross road of where we all can be part of the solution.

Humanizing is very important to me (as it is to you) and one of my key messages when I am presenting, advocating and at systems tables/initiatives. Sometimes science, governance, policy but even society in general forgets that we are all fellow humans along this life journey. I am often astounded by the level of stigma, cruelty and lack of emotional connection that people have.

"Real People. Real Lives." is hopefully the reminder that 'we' are not just data. I want to be counted and I want my late son to be counted; so we can inform data collection & research, to help drive policy, funding and relevant meaningful change.

I am encouraged though (as long as I keep my rose coloured sun glasses on) because I am discovering that even the 'prickliest' of individuals and/or systemic issues does seem to have a 'soft spot' once you disarm the armour and veneer.

Betty-Lou Kristy

Lived Experience/‘Family’ Advocate- Mental Health, Addiction, Trauma & Bereavement

Hi Karyn,

With your petition will you also be including regular mental health screening, especially for PTSD?

Within the "boys" club many Emergency Responders do not seek assistance when dealing with PTSD symptoms for fear of stigma and being seen as weak.

Addiction often masks mental health.