HHA's Changemaker of the Month
Merri-Lee Agar (July 2018)
Merri-Lee became passionate about hospice palliative care when her mother was able to spend the last weeks of her life at the comfort of her home surrounded by loved ones. Answering this calling she started volunteering at hospices in 2012. Now she is a Death Doula, Bereavement Specialist and Reiki Master/Teacher and she’s been part of HHA’s family for 3,5 years.
Merri-Lee believes that a smile can warm the heart and it helps to bring people back into this moment. Love fills her with joy, between others, specially the love for her daughter and her 19-year-old cat.
She hopes that her work will help people to have better access to the care they need and want.
Tell us about yourself and what is important to you; when it comes to HHA; what is your why?
I have always been a ‘quality over quantity’ kind of girl; I would rather have
one great experience than a handful of good ones. Because of that, ‘quality
of life’ has always resonated with me, but it wasn’t until I companioned my
mother on her dying journey in 2010 that I was made aware that there was
such a thing as ‘quality of death’. My mum wanted to die at home, in her
own bed, surrounded by everything and everyone familiar, and we were
fortunate to be able to facilitate that for her. Her last 3 days were spent with
her nearest and dearest family and friends coming to share memories,
laughter and love, and her last moments were spent with my sister and I
holding and comforting her. Seeing, first hand, the peace it brought her to
die where and how she wanted helped us immensely with our grief; it set a
beautiful foundation for healing, knowing how content she was. It also
inspired me to get involved in volunteering with a local community hospice
agency, and once I realized that I felt I was ‘answering a calling’ of sorts,
I pursued education in end of life care and bereavement. I have been a
hospice volunteer since 2012 and although there is good hospice palliative
care in the region where I live, there are still gaps to fill. When I first learned
of HHA’s Hospice at Home Program, I knew I had to be part of this
organization. I have been part of the HHA ‘Family’ now for three and a half
How do you feel your work in what you are doing with HHA is having an
impact in your community or all the communities HHA serves?
My work with HHA to date has been primarily in training and development;
first writing and creating our Compassionate Caregiving Online Training
Program and then co-creating and co-facilitating our two professional
development training and certification programs; Infant and Pregnancy
Loss Doula and Death Doula. Training passionate people who want to
support others through some of the most painful and difficult times in their lives is where the real ‘ripple effect’ comes in for me. Our students have come from all over Ontario, Canada, the United States and Mexico, so it feels incredible to know that each of them is taking the knowledge they gained back to their communities to help others. While I absolutely love being part of those two incredibly passionate teams, it is important to me to be present in my own community as well. As a Death Doula, it is very important to me to create a space for open and safe conversations about dying and death, and so in January of 2017 I brought Death Cafes to the Niagara Region and I have held them bi-monthly ever since. The conversation (and the coffee!) is always so rich, and it seems to give those in attendance ‘permission’ to carry these conversations on at home or with friends and they are so grateful. I also run a 6 week peer support group in Niagara called ‘Our Babies, Our Grief’; it is a progressive healing circle for parents who have experienced an infant or pregnancy loss and it is part of HHA’s Pre and Perinatal Hospice Program. The first group was last fall then this spring and it will continue to run in October and April each year. What an incredible experience that has been; creating a space for parents to share their babies, their love for them and their grief. Most people don’t realize that 1 in 4 pregnancies end in loss in Canada and so many suffer in silence. There has not only been healing, but new friendships forged among the loss parents, which provides a new kind of support for them. Further to that, having been involved in hospice in my community for the past 6 years, I see the gaps that HHA programs can easily fill – and decided to start a Home Hospice Niagara Region Chapter. This spring I approached colleagues, friends and kindred spirits who share my vision for quality end of life care in our region and we formed our Founding Board of Directors. I am
excited for the magic we will make happen over the next few years as we get established, and – long term – how we will help people have ‘quality of death’, much like my mother did.
What fills you with joy and how do you feel you bring joy to HHA?
Simply, love fills me with joy. Love for others; my daughter, my (19-year-old) cat, family and friends, and love for self. There are so many ‘things’ that flow from a place of love; kindness, compassion, hope...and there are so many ways to demonstrate love in simple but meaningful ways. A smile, for instance; I have a smile for everyone I meet on the street – and each time I get one back (which is almost always), it warms my heart. I feel that sharing a smile with others helps to bring people back into this moment – from wherever their thoughts are – to the now. We all lead busy lives and are so caught up in everything else that we seldom ‘stay’ in our bodies and in this moment. We are often stuck in our heads. Smiles are grounding for me, love is grounding for me, and I feel that when I demonstrate love, kindness and presence, it helps to bring others into that place as well.
This is a constant practice for me; in my personal life and in my work. When I facilitate HHA’s training programs, this comes across loud and clear – plus I have a bit of a warped sense of humour – which students and colleagues alike seem to appreciate.
What hopes does your work with HHA give you for the future care of the dying?
I hope that by creating the resources we have – our training programs and our services – that more people will have better access to the care they need and want, and that they receive it earlier. Palliative care should actually begin at diagnosis – not in the last weeks of life. There is so much opportunity if we join the journey early; education on what all of the options are, meaning making through legacy work, vigil planning, death planning, etc. Including family in their care through education is also immensely helpful, because they often want to be involved but don’t know how to be. It can be so meaningful to all involved. All of that can contribute greatly to ‘quality of death’. I have witnessed that first hand with clients that I have had the opportunity to work with from early on; their hope shifts from quantity to quality of life and they are able to make the most of the time they have left with their loved ones and with themselves. Because of that, they have died peacefully and felt ‘ready’ to move on to whatever is next. Often, that has helped ‘soften’ their loved ones grief.
Do you a favourite quote and if so what is quote?
Ohhhh, so many, but here are a few that resonate deeply for me:
These first two are how I live my life on a daily basis:
“Be the change you wish to see in the world.” – Mahatma Gandhi
“If you judge people, you have no time to love them.” – Mother Teresa
And this last one is from Dr. BJ Miller who is a palliative care physician in San Francisco. I had the opportunity to hear him speak last year in Hamilton and while his whole presentation was moving for me, this one thing was deeply seeded in a moment:
“If you only give and give and give, you are only living half a life. You just be able to receive as well. Only then will you be living a whole life.”
That really speaks to balance and self care for me – which is immensely important in life and especially as an end of life caregiver. All who come to this work are natural caregivers – it feeds us – but we must also remember how much it ‘takes’ and to get nourishment elsewhere as well.