Sunday, 14 October 2018

I Told the Story of Our Son's Transition and Researchers Listened

There are some aspects about my caregiving experience that have been harder than others. Whenever I can, I like to share ideas about what would have made our family journey easier so others might have an easier time. One of those issues is the TRANSITION of children with disabilities from children's health to adult services. Our son had a rough transition and we weren't alone in the disability community when called his 18th birthday 'Falling Off the Cliff'. I am happy to say that he's doing really well now and so I began looking for ways to share our journey from chaos to support and wellbeing.

I got involved as a parent partner in research a couple of years ago as a board director at Kids Brain Health Network and it's fun and interesting! Last week, I attended the American Academy of Cerebral Palsy and Developmental Medicine annual meeting where I co-presented a research project with principal investigator Dr. Jan Willem Gorter (The Transition Doctor - that's his name on Twitter). He's the head of CanChild at McMaster U. and the brains behind an app called ReadyOrNot that youth with disabilities can use to learn about how adult medicine works, how to navigate it and to advocate for themselves. Of course they do all of this with the support of family! The ReadyOrNot transition app is part of a larger Canadian national networked research project called CHILD-BRIGHT - check it out! The app is still in development and will be evaluated in a clinical trial, but we want everyone to know about the project so that lots of youth will volunteer for the study and service providers will be more aware of the transition challenges that youth and families face.

I also presented with Dr. Gorter on a panel about models of support for youth with disabilities and their families who are transitioning to adulthood. Personal stories of lived experience help to bolster the research messages and research helps families advocate for a better health care experience in the community. 

Advocating as a research parent partner is fun, interesting and a great way to contribute to making the system better for families. If this interests you, ask your clinical providers (nurses, doctors) about any current opportunities to participate in research projects that relate to the condition of your loved one. There is usually an honorarium paid to research participants and out-of-pocket expenses are always reimbursed if any travel is required. 

Friday, 28 September 2018

Fall Prevention: 10 Ways to Stay Safe in the Home

I have a good friend who recently had a bad fall. "That won't happen to me", I thought. Then last week I went to a very challenging balance routine at my gym. I was hopeless! Everyone fell over, including me. And my Mom fell easily before she passed away recently at the age of 96. Now I'm more aware than ever of the importance of falls prevention. It seems like a good time for this important post on staying safe at home. Thank you to guest blogger Victoria Sanders!

While your home is supposed to be a place where you feel safe, that’s not a reality for a lot of seniors. Over 800,000 patients are hospitalized each year for fall injuries, and older adults are at a greater risk of both falling and suffering severe health consequences. This makes fall prevention a paramount concern—here are some things you can do in your loved one’s home right away.
1. Watch out for fall hazards. In many cases, certain items like throw rugs or floorboards that stick up are easy to trip on. Make sure that you change out some of these items as soon as you can, and replace them with non-slip alternatives.
2. Make strategic safety additions. Adding something like a grab bar around the staircase or in the bathroom can help minimize the chance of falling in some of the most common areas of the house.
3. Keep the space clean. Even with all these preemptive measures, a cluttered home is still very easy to have a fall in. If you don’t have the means to keep up with this, consider enlisting a relative or friend or even paying a cleaning service to get rid of the clutter.
4. See your eye doctor. Vision issues play a major role in many cases, and you may need a new prescription for eyesight as you get older.
5. Stay aware of new developments. Chances are that you’re reading this article because you or a loved one is at an increased risk of falling, and you want to do everything possible to keep the seniors in your life safe. One of the best things you can do is nurse that instinct. Many different tech and care industry resources are available, updated with the latest information for you to learn from.
6. Watch outdoor areas. Your porch or yard can be common places to fall, so make sure they are well-lit and smooth.
7. Take a look at your medications. It’s not uncommon for medication combinations to lead to people feeling dizzy and lightheaded. Your doctor will help you make any necessary changes to help with physical stability.
8. Check your footwear. You may have that favourite pair of slippers or socks, but if you’re going to be walking around a lot, it’s best to leave those to the side. The footwear least likely to lead to a fall are low-heeled shoes with non-slip soles.
9. Be sure to stay active and eat well. Both of these help your body maintain healthy muscle tone, which is essential for keeping the balance, strength, and coordination you need to minimize the risk of falls.
10. Think beyond preventing falls. Despite your best efforts, even using the insight on this list, there’s always a potential chance that falls can happen. One of the best things you can do in these scenarios is to make sure you have a medical alert system or similar device in your home. Modern advancements mean these are easy to use, and even had added functions like motion detection.
With these tips and a little extra work, you can do a lot towards preventing falls in your home and creating peace of mind for both you and your loved ones.
Victoria Sanders is a full-time caregiver for her 96-year-old father who has suffered both a heart attack and a stroke. In her spare time, Victoria enjoys cooking for her family, gardening and spending time with her husband and their dog.

Friday, 21 September 2018

I Thought I Would Be OK, But I'm Not

My Mom passed away on August 16th at the age of 96. Ninety-six is a big number and a lot of years to live. When Mom reminisced about skiing down her street in Montreal as a child, I observed that her memory was 87 years old.

Of course I had imagined Mom dying. I thought I wouldn't feel sad - I thought I would smile and think, "well, she had a great run." And she did.

I wasn't expecting to be deeply shocked by the loss of her in my life. I wasn't expecting a strong sensation of being unmoored, adrift and alone. I wasn't expecting a lot of old demons about my childhood to rear their ugly heads. I thought I had put all these things to rest and I thought I had control of what my mother means and meant to me. I was wrong.

My mother was a person of extreme opposites. She was very funny and very loving. But she could be willful, impulsive and infuriating too. Now it's my job to reconcile those opposites and make peace with her, finally.

I said to a friend recently that I feel like my Mom, my Dad and the events of my life were like files in boxes, stacked neatly on shelves in my mind. When Mom died, all the boxes flew off the shelves, scattering papers everywhere on the floor. Now I must pick up all the papers, look at them again and put them away, perhaps in a different order. But those boxes must be re-stacked because one cannot live amidst chaos. I sure can't.

My sister Karen and I are both working on it. I'm feeling my own mortality and I'm realizing that my mother will always be alive in me. I have her genes, but I have her voice in my head, too. In a way, she'll never leave me.

Friday, 14 September 2018


Recently, I had the pleasure of speaking with sibling caregiver, activist and blogger Eric Goll. Here's my interview on EMPOWERING ABILITY - We are ALL Caregivers. Thank you, Eric!

Eric writes: In Episode #050, I had the pleasure of interviewing Donna Thomson and we dove into the topic of caregiving. Donna is an author and speaker on issues relating to family caregiving, disability and aging. She is a patient and family advisor on health research and policy. Donna teaches family caregivers how to advocate for care in hospital and in the community.

If you find this read interesting you can listen to the conversation in its entirety by clicking play on the player below or searching ‘Empowering Ability’ on your podcast player, such as, Apple Podcasts, Spotify, Google Play.

Before my interview with Donna I took the opportunity to read Donna’s first book, ‘The 4 Walls of my Freedom’, which really helped me to gain perspective on what it is be like to be a mother with a child that has medical needs. It gave me perspective on what it must have been like for my own mother, when faced with the medical challenges my sister experienced at a young age. Quoting Donna from her book, “Mothering a child with medical needs is a very public, but lonely endeavor.”

On the podcast I ask Donna, “Can you share your experience so that others listening can also understand your perspective? And, so other mothers maybe don’t feel so alone?

Paraphrasing from the podcast Donna shares, “My son, [Nicholas], has CP [cerebral palsy] and a complex disability. At 4 months [old] he was diagnosed, and it was like he became the property of health care and social care systems. We began to be assessed and I felt as though I was under a microscope. [I was] Grateful for the assistance because you feel like it is the key to the future success of your child, and you want to present as a competent parent. Then you learn when you present as a competent parent that’s reason for people to abandon you. If you seem to be doing well then people aren’t going to help you. In order to access the help you need at home you have to demonstrate failure as a parent. What do these assessments and scores about my baby say about me? Am I a success or failure as a parent? All of this brought the bond between my son and I closer and we would have very intimate moments when alone at home.”

I ask, “Do you feel that this pushed you into being a victim?”

In summary Donna replied, “Not exactly. We had to demonstrate to the system what our needs where, and to do that they had to show them that they were struggling.”

Finding Pleasure in Peeling the Potatoes:

In a previous conversation with Donna it came up that she had to find pleasure in peeling the potatoes and this connects directly to her book title ‘The Four Walls of My Freedom.’ On the podcast, I ask Donna, “Why do we need to find pleasure in peeling the potatoes? And, how do we do that?”

Paraphrasing from the podcast Donna shares, “I can’t leave my house, so how can I make a rich life of this? Watching the lady peeling the avocados next door through the window, [I admired] the way she was able to peel the avocado without breaking the skin was beautiful. I started thinking I can do that. Then I started thinking about how well I am peeling vegetables. It was sensual, secondly, I was feeding my children. I linked what I was doing with the purpose of what I was doing.  

I started thinking about the tiniest things that I was doing as forms of meditation, and it made me happy. I wasn’t doing anything differently, I was simply looking at myself doing the jobs of feeding the kids, doing the laundry, and making the bed.

Locating the extraordinary in the ordinary. We have the benefit of the slow movement lived loud in our families. We do things more slowly, we are more contemplative, we do things more purposefully. There is opportunity in finding meaning and joy in the way we live.”

Everyone is a Caregiver.

Donna shares, “The word caregiver applies to everybody. At the end of the day we are talking about dependency needs met by someone else. A pet, a friend, we all look after each other even when we are perfectly healthy in the prime of our lives. You are not feeling good I will bring you over some soup. We don’t have anything in our society to say that caring for someone is okay. The pendulum has swung so far away from providing care [being accepted in our society].

In my first conversation with Donna, she helped me to realize that I am a caregiver. When I was honest with myself it was the truth, and it felt weird. My ego didn’t want to accept this language because of the societal stigmas that are attached to caregiving. At first, it made me feel weak. Upon reflection, and acceptance that I am a caregiver there is a strength that comes with being a caregiver. Caregiving is one of the most connected and real human experiences that we can have, it has been wired into our biology as we have evolved as an advanced species. As Donna shares, “Everyone is a caregiver.” 

So I ask you, how are you a caregiver? I invite you to celebrate that you are a caregiver, and not to fight it or deny it. What are the benefits that caregiving brings into your life?

Donna's Life as an Activist:

Paraphrasing from the podcast Donna Shares, “My idea was do to a post mortem on our family experience and the support that we received, or did not receive, and to determine what was helpful and what was not helpful. I thought this would be useful for other families and policy makers. I became involved in inclusion. I became active in the family movement, and I became involved with the Ottawa affiliate for PLAN, which is all about citizenship.

I became aware of and met Indian economist, Amartya Sen, who developed ‘The Capability Approach’. The Capability Approach looks at how people can be supported by the community and the State so that they can have a life that they value. It is about individual choice and being supported to have a life that you value within circumstances of adversity. Sen was looking at extreme poverty in India, but I used this approach to look at my family.”

Donna used this approach in her book 'The 4 Walls of my Freedom’  looking at how people can make personal choices, express their personal values, and live in the community to do this. Donna and I further discuss inclusion, and I recommend you listen to this episode to hear these perspectives.

Donna's New Book:

Donna shares, “I’m co-writing a new book with Dr. Zachary White, a professor at Queens University in Charlotte, North Carolina. Dr. Zachary White is writing about Caregiver identity and how it is so difficult to express the transformations that happen when giving high levels of care to someone. Lots of things grow and lots of things die when you become immersed in giving care to someone. Giving people language to create the narrative to understand your life in the now.

My part of the book is the what’s next. What can you do to be an advocate and take action; personal support networks, what are the assets in your community [asset based community development], and online tools including support groups. These are actions you can take to thrive in situations of adversity. It will be titled something like ‘Transformations in Caregiving’ ”.

I thank Donna for coming on the podcast and sharing her deeply personal experiences, and her insights on caregiving. Thank you for doing the work you do Donna!

*You can listen to the podcast by clicking below.*