First international young carers conference!

I am so excited!  I completed my conference selections for the first International Young Carers Conference which will be held in Vancouver British Columbia in May.  The conference is called Child and Youth Matters and has combined three conferences in one.  They are the First national Family Mental Health Conference, the Third International World Congress on Children of Parents with Mental Illness and the First International Young Carers Congress.

The number of presentations to choose from made choosing the conferences difficult.  There were so many things that appealed to me from my previous life as a mental health Case Manager and  my new role as an advocate for care-giving children couldn't be a better fit.  The conference will bring together people from many different backgrounds to share and learn.

The Young Carers movement in the UK and Australia is well established.  In England the government has a national strategy for Caregivers.  Our Canadian group will be able to learn a great deal from these established programs.   I am looking forward to the experience and learning opportunities that will shape our Canadian commitment to children who take on important roles in their families and communities.  I will report back in a few weeks after the conference!

Supporting our Supporters

Caregivers rarely beat their own drums.  As a group they don't see the things they do as heroic they simply plug along giving and providing in response to the needs that present themselves in front of them.  It is expected that families will care for the young, sick and frail.  As a society little value is placed on the tireless advocacy and care provided to those who need it.


I have been an active participant in programs that support caregivers young and old.  Trying to garner support for these groups has been an uphill battle.  People are reluctant to cast themselves as martyrs or to beat their own drums.  They simply meet the tasks before them and wade through one after another out of love, commitment or a sense of responsibility.


What brought me to writing this latest post is reflecting on the role that the local chapter of the MS Society has played in my life since my diagnosis.  I've served on the Board of Directors for the Young Carers Initiative and volunteer at the local chapter of the MS Society where meeting the challenges facing caregivers is a frequent discussion.  What is also difficult is reaching overburdened caregivers both young and old to give them support and replenish them to keep doing what the do.  They too do a poor job at the beating their own drum about the work they do and the significance of the contributions they make.


The local chapter of the MS Society has been a cornerstone in my life since my diagnosis.  At the local chapter I have been an active volunteer as I worked through my own grief cycles.  They allowed me to contribute and be a part of their mission to improve the lives of those living with MS as I dealt with the loss of my career, my image and grappled with my sense of self.  From the early days following my diagnosis they provided me with information, equipment, exposure to modified yoga and exercise programs, support groups and a friendly visitor program for people who can not get out. My children have benefited from the Kidz Klub program where they have had opportunities to attend amusement parks, and engage in activities with other children who live with a parent with MS.  I have participated in creating a newsletter, provided educational in-services to newly trained health professionals, provided office support, and assisted in writing grant proposals.  


The more I reflected on the role they have held in my life for the last six years, the more committed I became to supporting them.  The MS Society of Canada is experiencing some significant growing pains due to decreased revenue.  They receive no government funding and rely solely on public donations to enable continuing research goals and support at the local level to those living with MS.  They are in a position to need to make some serious decisions about where their priorities lie.  I only hope they are able to find a way to keep offering supports "on the ground" and to provided needed dollars to enable research to continue.


I would encourage you to complete this survey to let the MS Society of Canada know what is important to you: (Canadians only)


This 'renewal initiative' outlines the potential priorities.
http://mssociety.ca/en/community/mssc/Renewal.htm

Here is the survey (Click on the survey monkey link)
http://mssociety.ca/en/pdf/RI-Paper-...-Solutions.pdf


And finally to consider making a contribution to the local MS WALK in support of those who support people living with MS.
http://mssoc.convio.net/site/TR/MSWalk/OntarioDivision?px=1256015&pg=personal&fr_id=1296

Rabbit Speed!

Using mobility aids was a big pill to swallow at the age of 33 when MS blew into my world.   But you just have to keep plugging along in life, and my son wanted a paper route.  He was shy, and unsure how to collect on collection day.  He wanted me to come along and be there in case a customer had a concern or there was an issue with making change.  |Getting around my house was a challenge some days, and there was no way I would be able to walk around the streets of our neighborhood.

So off I went to Shoppers Home Health, the only store around that had scooters available to try out on their store room floor.  I picked one that was pretty zippy and was able to manage tight corners.  It also fit quite nicely into the trunk of my car.  It has two speeds indicated by a turtle, and a rabbit.

I got my new machine home and decided that I would remove the basket and there would be no flags on my scooter.  These made it look much too fitted for a senior.  On my first trip out my son had his paper cart stacked with papers, he was all bundled up and ready for his first day of work.  I held the list with the addresses of his customers and together we figured out the best route to take.

As I was riding down my street I experienced a flood of different feelings.  I was proud of my son, I was thankful to be able to go along with him until he felt he could manage, and I was mortified that I would be seen by someone I knew.  As we buzzed along I felt the cold winter air on my face and it reminded me of long snow mobile runs I would take with my dad when I was young.  Later I told my kids about it and we laughed.

Today, five years after buying my scooter my daughter emailed me this link.  It brought the laughs we shared back to me.  I thought I'd share it with you.  Its really funny!
Click this link:
70MPH Mobility Scooter In The Snow | Break.com

In Support of Powerhouse Project- Young Carers Initiative

I was invited to speak at meeting with the government body (LHIN) that funds the Young Carers' program The Powerhouse Project.  It was a great opportunity for me to share with them my passion about programming to support young people providing care in their home to a chronically ill or disabled relative.

Gratitude versus Fear

Life since MS has been a journey of diametrically opposed experiences.  I have been challenged by extreme losses that span physical, psychological, emotional, social, relational and occupational spheres.  In contrast to the many dark, unsettling losses I have been humbled by some unearthly expressions of kindness, generosity, and humanity.  These amazing dialectics have given me much to process, to distill and to ponder.

MS has been described as a thief in the night.  He prowls through your most coveted possessions.  Rifling through the things you hold most dear and leaves with what he thinks are the most marketable items for resale.  The sun does come to rise again, but things are never the same.  You've lost things you once valued, but more than that you've lost a sense of safety, familiarity and those things are so much harder to replace.  Many parallels can be drawn between a midnight home invasion and living with a chronic disease like Multiple Sclerosis.  You just never know when it will strike and what its impact will be.

MS has ravaged my brain. At times, my physical state has spanned between looking well enough to pass as "normal" in a bystanders eyes to being bound to a bed with little control of my body or its movement and function.  The time span between the two has been shockingly brief, giving no opportunity to distill the changes into my self concept.  I recall in my early days, being no different in my mind as I was the month previous mentally preparing to attend a conference for work when in fact I was unable to sit, or transfer safely to a wheelchair.  There was absolutely no way I would have been able to attend that conference but I felt no different until I tried to move and there was no response in my body.

During this time my emotions ran high, my self image so out of sync with my failing body I can only imagine what it was like for people on the outside looking my way.  I remember feeling overcome with happiness when I saw the faces of people I thought I might never see again (if I didn't make it).  This prompted many raised eye brows and whispers.  People wondered if my responses indicated that I didn't understand the potential that the unknown disease process carried with it the risk of death.  But the opposite was actually true, the fact that I had the opportunity to see, to hug and to create new memories left me with a powerful sense of gratitude.

At the time I told my doctor not to worry, that I wasn't going to die. I had too much living left to do.  He left my room that day with a heavy expression.  In fact, I did not have an imminently terminal illness and I have been gifted five years since that day to carry out that living.    

In the days following my hospital admission and diagnosis in 2006 there wasn't a need that presented that wasn't met ten fold.  Worries about how I would afford to pay the bills were quickly followed up with worries about how I would acceptably thank the many people who offered gifts large and small. Many of these gifts came from people I didn't know, who didn't know anyone in my family but heard about our story and then there were the kind earth shattering offerings from those people who know and love me.

I sometimes find myself feeling lost without the structure, peer connection and balance that work provided in my life. But, during these last five years I have lived with a feeling of gratitude and indebtedness that has carried me through the rough times. It has given me cause to reach out and give back in as many ways as possible.   It has strengthened my faith, restored my hope and provided me with the courage to face fear and adversity. 

With this mighty arsenal that thief in the night can't possibly bankrupt me, can it? 

Looking Back, Moving Forward

"Sometimes all you have to do is live long enough for things to get better."


This was the advice a colleague told me during a moment when I reached a low point in my life from which I felt emotionally devastated.  There were many people lending an ear to help me release the pressure that reduced me to an empty vessel.  But those words cut through my grief like a hot knife through butter.


He was so right.  In time I did bounce back from that difficult time and life went on as it should.  Days blurred into weeks and life took on familiar routines.  Without giving it much thought I tucked this useful "reframe" away in case I needed it again.


During the days and weeks  following my diagnosis and the devastation that was left in its wake I would tell myself to just live in this moment.  I would use skills that I taught others; familiar but a bit like trying on an outfit from a second hand store just like one you've previously owned.  The fabric feels familiar but it has taken a slightly different shape and you have to determine if you can "make it yours".


Reaching into my memory for those things that might help as I was dealing with changes that crossed physical, mental and emotional spectrum's I found I had much to draw upon.  "There is enough pain in life to live in the past or the future.  Just deal what is immediately before you."  These were things I had told my clients countless times and I was now telling myself to ease my heavy burden.  The bravery that my clients' faced their challenges was often reflected upon to buoy myself if my reserves were getting low.  The clients I worked with in an outpatient mental health program were 'ultimate warriors' who were living with severe chronic mental illness.


Living mindfully offered me freedom.  I found that when I focused my mind by observing my present environment it was a powerfully grounding experience.  I would allow my mind to drift off if other thoughts entered my mind, but always skillfully bring it back to the present moment and the task of being in observance of my surroundings.  When I finished  I always felt a little more able to deal with what was before me.  The exercise would take no more than a minute, and I could do it as often as I needed to renew my sense of strength, resilience and reserve to move forward.


As I reflect back now, I realize this was one of those times when "just living long enough" made something that seemed unbearable like living with a diagnosis of  MS better or at the least, bearable.

No matter how bad things are at any one moment, no moment lasts. good or bad, time moves on because it has to. And so do you.  Author Unknown

Pride? Dignity? Ego? Never Mind...

Accepting help is difficult for most people.  Working in social services I saw that again and again in the many hats I wore.  Examples flood my mind with so little effort.  Working in nursing homes, providing visiting nursing support in the community, working with young "at risk" parents/families, for the social assistance office, in palliative care and in outpatient mental health services I worked with a variety of people from every socio-economic status.  Despite the different reasons people were in need, one thing was certain. That was asking for help and accepting that help did not come without a personal price tag. 


We live in a society that values autonomy, self reliance, strength, and independence.  The thought of losing control is terrifying to most of us.  It is imperative to our self construct that we see ourselves as whole, capable, and able.  When you are suddenly faced with being unable to do things it is a mighty blow weather you are an 80 year old senior, a young new mother, a successful business owner, or a middle aged person.  When I was first hospitalized with symptoms of multiple sclerosis the task that faced my care team was a mighty one.  I was a caregiver, that was my role professionally.  Beyond that, it was what I thought most defined who I was.


Accepting help challenges us to reevaluate who we think we are, and what makes that so. We are forced to see that we can't always be "givers" we must also be willing to accept help.  It makes sense really, everything in the universe must have opposing sides to enable balance.  Let me tell you, learning to be the recipient of help wasn't easy.  It required me to set aside so many roles in my life where I felt competent, capable and whole.  Allowing people to assist me with the most intimate things in my day or the most mundane required me to swallow my pride, my dignity and my ego.  Accepting help gracefully wasn't easy when I was the "client".


 As I was doing my research for the Resiliency in Young Carer's page of my blog I came across the work of Matthew Tull, PhD.  The majority of his work is in the area of Post Traumatic Stress disorder.  He compiled a list of skills helpful in facilitating resiliency in the face of adversity.  As I look down the list it is easy to see how these approaches would lead to favorable outcomes, but what wasn't so readily seen is the personal struggle that so often is faced when you are the one dealing with the adversity.  As you look down the list can you think of a time when you struggled with any one of these?  What did you have to give up?  Were you successful?

• The ability to cope with stress effectively and in a healthy manner (not avoiding).
• Being resourceful and having good problem-solving skills.
• Being more likely to seek help.
• Holding the belief that there is something you can do to manage your feelings and cope.
• Having social support available to you.
• Being connected with others, such as family or friends.
• Self-disclosure of the trauma to loved ones.
• Spirituality
• Having an identity as a survivor as opposed to a victim.
• Helping others.
• Finding positive meaning in the trauma.