Tuesday, 3 December 2019

A Quebec Court Ruling Threatens Canadians With Disabilities

Our son enjoys an excellent ‘ordinary life’ with the support of his helpers, medical professionals, friends and family. As a person with chronic pain, he spends most of his time lying down in bed, a place of comfort from which he writes a hockey blog, Skypes friends, tweets opinions and conducts research into sports history.  

We live in Canada and recently, a legal ruling came down that has me very worried for my son's future. A Quebec Superior court ruled in favour of Jean Truchon (who has cerebral palsy) and Nicole Gladu (who has post-polio syndrome) when they challenged Canada's eligibility rules for access to medical assistance in dying. The judgement stated, "The reasonably foreseeable natural death requirement deprives both individuals and claimants of their autonomy and their choice to end their lives at the time and in the manner desired." Lawyers for the federal government argued that the "foreseeable death" criterion is necessary to protect "vulnerable" people who are suffering from serious ailments but are not fatally ill from using the law as a way to die by suicide. The federal government has not appealed the ruling and that has my family very worried. Who will protect our son's right to LIVE?

The greatest worry in our family is not who will love our son after my husband and I die (we have a plan for that), but rather who will protect the integrity of the supports he needs in order to make his life liveable. The possibility of losing those supports and the legal basis on which to reinstate them is the reason why I am an advisor to The Vulnerable Persons StandardI believe that any framework for Medical Assistance in Dying that expands eligibility beyond those who are at the natural end of their lives will threaten my son and the supports he needs to live. There is simply no alternative safeguard or protocol that would in any way remedy or ameliorate the harm that removing requirement for nearing a natural death will cause. 

Do I believe that people at the end of their lives should have unfettered access to medical assistance in dying? Yes. Do I believe that people should have access to medical assistance in dying if they are not at the end of life? No. Would I want access to medical assistance in dying if I was in pain at the end of my life? Maybe. Would I want support to live a good life if I suddenly became disabled by something like stroke (as happened to my father) or by Parkinson's Disease (as happened to my step-father)? YES. 

Do I have a really good reason to be worried about this ruling as it pertains to our son? Yes. Just consider this tweet from Canadian Professor of law and bioethics, Trudo Lemmens
Remarkable historical fact Dutch #euthanasia policy. Report 1972 Protestant church recommended legalization also because 2) scarcity hospital beds 3) overpopulation ! Extraordinary pragmatism & honesty. Now never publicly stated. #MAID presentation @ Huron University
11:54 AM · Dec 1, 2019Twitter Web App

My son’s essential supports are expensive (he is among those living in the community with the highest needs). There will be those who would draw negative assumptions about the quality of his life based on the severity of his disabilities. Those people have not talked to our son. But the pressure to save community health dollars at the expense of the most vulnerable (especially those who are non-speaking), is to me, an obvious outcome of removing the Medical Assistance in Dying requirement for nearing a natural death. Assuming that the goodwill of people will protect my son’s life is not good enough – he needs the law behind him.

Sunday, 1 December 2019

The Before and DURING of Caregiving Relationships

Yesterday, the co-author of our book The Unexpected Journey of CaringDr. Zachary White and I were chatting about a workshop that he gave to spousal caregivers attending the Well Spouse Association's annual conference. Zachary was helping caregivers try out language to describe the transforming nature of their spousal relationship - before, during and after caregiving. 

I was fascinated. "Here's an exercise you can try", Zachary suggested, "see where it goes when you think about caring for your Mom. Finish these two sentences: Being my Mom's daughter was like... and now, Being my Mom's caregiver-daughter was like..." "OK!", I said. I pondered these two relationships and closed my eyes, searching for an image. 

I said, "Being my Mom's daughter was like looking at the earth from outer space. It was all swirly, vibrant colours, but it was a contained sphere and I could look at it from a distance." 

Then I reflected on how my relationship changed when I began to give care to Mom. "Being my Mom's caregiver-daughter was like standing on the edge of an active volcano. Hot and unpredictable!", I laughed at the dark truth of it. 

I've been thinking about the power of this simple exercise to help put words to the ways that caregiving has changed my relationships. I'm going to continue thinking about metaphors - for me before children, for me after Nick's disabilities began to define my life and for me today. Tell me about your metaphors. Your life as a caregiving daughter/son/mother/father/brother/sister is like.....

Friday, 29 November 2019


I am pleased to host this guest post about mobility scooters - what kind of questions to ask a salesperson and how to locate funding assistance, no matter where you live. Purchasing a mobility device is a big decision but it can mean MORE independence, not less. Donna

How expensive are mobility scooters?
From electric wheelchairs to power chairs; there are so many different mobility products for you to choose from today. One aid that has become very popular is that of the mobility scooter.
Scooters are available in abundance. There are plenty of options to choose from, all of which offer people a great deal of independence. With prices, quality, and sizes differing, read on to discover more about the options that are available.

Who is a mobility scooter suitable for?

A lot of people prefer mobility scooters over powered wheelchairs, and they can be particularly beneficial for those that do not require assistance all of the time but would benefit from a helping hand when doing their shopping or running any other errands that are more demanding than the standard day-to-day living.

How much will it cost you to acquire a mobility scooter?

Nevertheless, buying a handicap scooter is not to be rushed into, as there are many options to choose from, with prices reflecting basic to high end models with lots of bells and whistles. Because of this, you should have no trouble finding a mobility scooter that fits in with your budget. However, it is all about balancing your budget with quality. After all, the last thing you want to do is simply go for the cheapest scooter on the market. If you do this, it may not be right for you, and this can actually be very dangerous, as well as being frustrating. Therefore, make sure you create a shortlist of scooters that are right for your needs, and then you can distinguish based on price.
It is important to recognize that Motability scooters are categorized into different classes. Class 2 scooters can go on pavements; the smaller they are, the easier they are to store, use indoors, and transport. In fact, some can be dismantled so they can go into the boot of your vehicle. You then have Class 3 scooters, which are bigger and can go on the road. They are designed for longer distances and they are more robust. All of these sorts of factors are going to have an impact on how much you will be expected to pay for a mobility aid like this. Consider the weather where you live, too. Ask the vendor about the best model if you live where winter roads are likely to be icy and snowy.

There is financial help available if you want to buy a mobility scooter

In Canada, a great roundup of sources for financial assistance is HERE. In the USA look HERE. In the UK, it is also worth noting that you may be able to pay for your scooter under the Motability scheme, and you will get added services, including repairs and insurance. Under this scheme, you will get mobility benefits, which you can use to lease a scooter. In the UK, you will be eligible for this if you receive one of the following benefits: the War Pensioners’ Mobility Supplements, the Enhanced Rate Mobility Component of PIP, the Armed Forces Independence Payment, and the Higher Rate Mobility Component of the Disability Living Allowance. 
So there you have it: an insight into how much you will be expected to pay for a mobility scooter, as well as the different forms of financial assistance that are available.

Wednesday, 27 November 2019

Happy Thanksgiving!

To everyone who celebrates with family this week, Happy Thanksgiving!

A Caregiver's Thanksgiving Blessing
Thank you for the good days and for the strength to get through the bad ones.
Thank you for the friends and family who have ever given us a gift of food, a ride, their companionship or their time.
Thank you for the doctors and nurses who have been kind.
Thank you for the love in my heart and may it always be stronger than the fatigue and frustration.

Wednesday, 6 November 2019

The Month of November - It's Important for Two Reasons

November is a sombre month. The leaves have fallen where I live, and the skies are steely gray. Rain changes to sleet and then back to rain again. Geese cry overhead.

On the streets, most people are wearing poppies. "Lest we forget" is a warning phrase we see in bus stations, on facebook and on veteran sponsored ads on television. I won't forget the sacrifices made by our soldiers, because my Dad was one who fought in Europe during WW11. He was one of the lucky ones - he came back.

My Dad was kind, gentle, quiet and very funny. My sister and I adored him. In 1973, he suffered the first of three strokes and for two years until his death, my Mom, my sister and I cared for him at home.

Recently, I have been thinking a lot about the meaning of care over years - how care changes and how it changes us. Maybe it's the melancholy of November or perhaps it's the messages I see in my news feed about Caregiver Month and Remembrance Day (or Veterans Day as it's called in the US).

Yesterday I listened to an extraordinary podcast interview with Dr. Arthur Kleinman, author of The Illness Narratives and his latest book, The Soul of Care: The Moral Education of a Husband and a Doctor. For ten years, Dr. Kleinman cared for his wife who had Alzheimer's. He also happens to be a medical anthropologist at Harvard. But here's what he said that reminded me of my own life of caring and of my Dad:

"The real issue about caregiving is that there's no Hollywood ending. So, how do we endure? This is the challenge. We are never sure that we can endure the unendurable. How do we keep going?

Image result for arthur kleinman wife

How many people come to a wall and feel that we can’t get over it but because of love, we get over it. Love and moral commitment. The last part is that care does not end with the death of the person - you care for memories after that. Building a story about one’s life and one’s family. And central to that is memory, memory of the care you gave and what went before… the time we spend developing those stories."

I do remember my Dad and in that way, I continue caring for him. And this month, I salute every other caregiver who is with someone who needs them, finding a way to scale a wall of despair and exhaustion because of love.

Friday, 1 November 2019

The Cost of Silencing Yourself

Yesterday I was driving home from a hospital clinic appointment for our son (it was routine and went fine) and as usual, I was listening to the radio. I began to listen intently to the story of Leah Hager Cohen, a 50 year old Canadian who made a silent vow to donate a kidney as a personal act of altruism. When Cohen finally broke the news to her partner, she had already been accepted to the hospital donation program. He was deeply hurt that his life partner had not shared this decision and the couple is still working through that breech of trust. 

What interested me was Cohen's reason for not sharing her choice with anyone. She said that all her life, she had been a natural caregiver. She is a teacher, a mother and a wife. She has been blessed with good health (something that she felt was a random and somewhat undeserved blessing). But here's the thing - she also said "All my life, I have forced my values and choices to align with others' in order to make them happy and as evidence of my caring. I wanted to do this and own the decision. I wasn't afraid of what my partner would say, I was afraid of MYSELF - of my own inability to stay true to my choice." 

I found myself reflecting on whether aligning decisions and choices with the needs and preferences of others is necessary to the happiness of caregivers and their families. Or, is it just that women are less good at negotiating hard but respectfully for the things that they really want or need? What about Cohen's husband and his role as a caregiver after Cohen's surgery? He didn't have a choice about that, but he did it. 

Does our ability to negotiate personal choice erode after years of caring because it's just easier not to rock the boat? And then, is it acceptable to break the habit of capitulation no matter the cost to our relationships? What can we learn from Cohen's experience? Maybe it's just to think through what is most important to us and then talk about it first with someone who is trusted and non-judgemental. Bravery and determination in communicating the choices we make is necessary but so is respect and the consideration of others' realities. It's a tricky balance.

Tuesday, 29 October 2019


Recently Dr. Zachary White and I gave a webinar as part of a series of free, supportive learning events for caregivers sponsored by the Department of Continuing Education at McMaster University. "Caregiving Essentials" is the title of an upcoming series of online webinars for caregivers. Check it out! Zachary and I will be giving two of these sessions based on ideas from our new book, The Unexpected Journey of Caring: The Transformation From Loved One to Caregiver (Rowman & Littlefield, 2019). Register and join us now! The course runs for 8 weeks and ends on December 20, 2019.

Here's a sample of our conversation from the last webinar - 

Question: What are some of the benefits or advantages in being a caregiver? What has been a caregiver taught you about yourself or has positively impacted you?

Donna: There are enormous benefits and advantages to being a caregiver. I think there is something that I would call a caregiver advantage or caregiver edge. We are experts in living in the moments, experts in giving comforts, and experts in living in an open-hearted way according to our values. We have enormous knowledge, and we have skills that we have mastered. These skills involve soothing, nurturing, navigating. Some of our skills are soft and some of them are hard...Who else knows how to repair a broken breathing tube using duct tape on a city bus? Who else can 'Macgyver' solutions better  than caregivers? We have enormous knowledge, skills and wisdom that we can be very proud of.

Zachary: Growth-related meaning is earned from our experiences that shape us in ways that others do not have access to, especially in the 21st century. The people gathered tonight are relationship innovators. Innovating and 'macgyvering' in ways that we never would have planned nor perhaps wanted. The idea that we understand silence and we are able to connect to someone with silence in ways that most others don’t. The way we understand how to truly listen to someone,  to be with someone. That we understand what can happen in a relationship when we walk in without an agenda, not having to change who they are because so many of us have to live within the constraints of the bodies and people for whom we love dearly. We cannot change the conditions, but we can learn to live with and understand who they are, and what is present and available to us, in ways that most other people cannot fathom. In America, we talk about the great innovators being in Silicon Valley, but to me, the great innovators in the 21st century are not building and engineering tools - they are building relationships in ways that other people yearn for.  We can find a sense of understanding each other in the most challenging of circumstances.