It has been awhile since my last blog post.
It is a curious thing that I can tweet out many tweets regarding my thoughts and passions, yet when it comes to writing it down in a blog format – I am nervous and afraid to have to say so many words.
But an opportunity happened for me last week, and I need to share it. I was contacted by Health Quality Ontario – @HQOntario during the summer months. I am a senior, a patient, a grandmother, a mother, a caregiver and I had also experienced working in Long-Term Care…(nursing homes).
My experiences of living many years in northern and isolated communities of Ontario (and other provinces) has given me a viewpoint that not everyone may understand.
Through my experience and that of friends and family who also deal with patient experience I know how expensive, time-consuming, frustrating and exhausting it is to have to fly, drive, or take a bus or train to see a physician, get evaluated, have to spend money you don’t have, take time off of work that you can’t afford – and how all of those aspects affect not just the patient but the entire family and workplace.
When I was invited to attend Health Quality Ontario Summit on Dec. 3rd, 2015 – I at first hesitated, unsure what I could possibly bring to the table. I also knew I couldn’t afford the trip, flight, accommodations and meals. Not to mention getting to and from airport, hotel and seminar locations.
I am so appreciative of the financial assistance from HQOntario, who made it possible for me to attend. Thank you very much.
I began to get enthused about this opportunity to actually hear from many other speakers, view presentations, and also be part of a panel that represented Caregivers from all walks of life, all locations across the province. Everyone had so much to share. We were called Individuals with Lived Experience. We definitely were that!
I believe this is a form of connection, learning and sharing that needs to happen more often. I think that healthcare design and availability can be improved greatly by finding out from the source – the caregivers, the patients, the families that deal with so much unheard, unsaid situations, frustrations and the heavy load of caregiving which is such a burden to carry and has totally been lost in the shadows.
This was such a great opportunity to speak, share, express need and support – and try to make things better for the massive numbers of unacknowledged caregivers and support people who do round the clock caring for their loved ones.
Each member of the panel I was part of – had an interesting story to share. Each of us had a different slant, perhaps distance, perhaps special circumstances, different stresses in either caregiving, connecting with the right supports in our communities and trying to do it all on little sleep. Many caregivers work tirelessly for their loved ones and it is just understood that you as a caregiver you do what you can, you get what you get, and that is that. Supports and respite are minimal and not enough. Sometimes there are special circumstances, special considerations, and definitely the caregivers are the ones who are often exhausted and at the end of their rope trying to do it all.
We discussed the travelling, the patient care, the many duties caregivers do – from personal care, to shopping, cooking, laundry, medication ordering, counting, administering, sometimes changing bandages, wound care, making observations on the patient for skin care, mood, engagement and so many more duties. There is bathing, transfers, safety issues, diet considerations, record keeping for meds, keeping a journal for day to day observations and incidents.
That isn’t all. There are 24 hrs in the day. If you are lucky you may get a support person who comes in for a couple of hours per day to help relieve the caregiver of the stress of being “on duty” – “on Call”
Sometimes this help shows up, sometimes it doesn’t. Sometimes caregivers don’t trust the very workers who are there to relieve them. Sometimes it is more stressful to get out – and worry about your loved one while you are away…
To caregivers – the endless hours, days, weeks, months and often years of caregiving stretch out like a highway with no destination. To the person needing care it is also a difficult road – but the caregiver carries the weight, the worry, the responsibility.
To be able to meet together at the Health Quality Ontario Summit and express thoughts, feelings and try to convey those feelings to those who were trying to support us – was validating for me.
I have faith again, I have hope again, I have felt empowered by this opportunity to share my road, as a caregiver – and to hopefully see the future for caregiving be a less stressful situation – for those who do it every single day and night.
I was strengthened by meeting others who had stories like mine, who carried such heavy loads, who knew instantly what I was talking about, and whom I could understand as well.
The overview of this Summit was to hear from those in the home situation talk about what they deal with and how we could make things better. The concept of working together as a “Team” for the benefit of the patient and the family isn’t a new concept, but it certainly was Front and Centre at Health Quality Ontario Summit this past week.
I came away feeling lighter in my spirit, energized by the staff who greeted me and all the other participants as important members of the conversation – and for that I am grateful. We do know how it feels, we have some ideas to share, we do want to work together and see things bettered for those who live at home and support their loved ones.
I listened to Dr. Eric Hoskins Minister of Health and Long term Care for Ontario, Dr. Jeffrey Turnbull, Chief of Clinical Quality at HQOntario, Dr. Joshua Tepper, President and CEO of HQOntario, and many others share their thoughts and their vision for a better collaboration for patients and families. The idea of Equity, of bettering health care across the province is a good one. It is challenging however because of the vast distances some of us have to go to receive health care. But, by listening to representatives from across the province – there is a good chance some new plans will be put in place to give all of Ontario a better chance to access timely care, support and treatment.
It was an honor to be invited, to meet so many who wanted to hear the individual stories, and to leave after the two days – knowing I was able to share things no one had ever asked before.
Patients are the centre of the circle of care. Patients and their caregivers have some good ideas, and they deserve the opportunity to share their experience. For many who have to take a train, plane, bus and car to access tests, treatments and health support – the journey to better health is far harder for those who live so far away.
I look forward to the results of the seminar, and I hope that in a tiny way I was able to help Health Quality Ontario understand just how complicated it can be to caregive and how much caregivers need and deserve the same support that patients get. Without the caregivers at home – many patients would be alone, or perhaps needing much more support in hospitals, nursing homes and rehabilitation centres.
Keep supporting those in the circle who although aren’t trained healthcare professionals – but who in fact who do many of the same jobs that nurses and doctors may do – just trying to make sure their loved one gets the care they deserve.
I am grateful. I am hopeful. For the patients and family members we love and care for – who can’t make it without us – they thank you too….