Wednesday, 18 July 2018

Why I'm So Quiet This Summer

Happy Summer, everyone!

A few exciting things are happening in my life during these hot, sunny weeks at the cottage. 



1) As you may know, we got a new puppy. Daisy is growing and loving the beach, learning to swim and trying to comprehend the nature of deer who wander into our back field. 



2) Later in August, our son Nick turns 30(!), so we are helping him plan his party.



3) Mom is coming up to the cottage for the day this weekend (it's a surprise)!

And mostly, I've been busy working on my laptop, sometimes in the wee hours of the night when I think best. Dr. Zachary White and I are co-writing our new book on the personal transformations that caregiving brings with it. Zachary is writing about identity, perception and language (or lack of it) that we have to describe our individual care experiences. I am writing about advocacy tools, confidence, asking for help and exploring the community for resources. The working title of our book is The Caregiving Transformation: From Loved One to Caregiver. It will be published by Rowman and Littlefield for release in hard cover in the spring of 2019. Of course Zachary and I will keep you posted! If you aren't already a fan, Zachary's blog is The Unprepared Caregiver - it's my #1 favourite.

I hope you are enjoying the summer in the company of loved ones and that caring is a little easier in the warm weather when it's easier to be outside with friends and neighbours. And my last thought to share before I get back to my manuscript - here's a quote I re-discovered yesterday: YOU CAN DO ANYTHING, BUT YOU CAN'T DO EVERYTHING. It's a good message to tell ourselves every single day. 

Saturday, 7 July 2018

The Natural Tribalism in Disability Parenting



A truth about disability parenting was revealed to me in two recent conversations. 

The first conversation was with an acquaintance - someone I don't see very often, but whom I care about very much. Like me, she's the mother of an adult child with disabilities but unlike me, she has had little support over the years. In combination with her own serious health concerns, my friend's path has not been an easy one. 

Yesterday we met and had a long chat. Tears were shed, hugs were freely given. We shared stories of the challenges and transitions we and our kids have experienced over the past year.

Today I met another friend who I don't see more than a couple of times a year. She too is the mother of a young man with disabilities who thrives with some support in the community. Her son has a meaningful, rich life and so does my friend, his mother. Today I mentioned that I'd run into the other Mom yesterday whom I assumed was a mutual friend, because we all live in the same community. It turned out that my friend today didn't know my other friend from yesterday's chat. But there was something else. 

I felt the difference between parents of severe disabilities and parents of children with more mild impairments. My friend who is the Mom of a son with milder challenges is one of the kindest people I know. She exudes natural healing and concern for others. It wasn't that she wasn't concerned for my other friend. She just didn't feel the kinship that I do. 

I recall writing a blog entry a couple of years ago titled For The Secret Club of Extreme Parenting and the opening paragraph read like this:
There is a secret club amongst caregivers.  Sometimes the experience of caregiving is so extreme, painful, dangerous and exhausting that it cannot easily be described to 'normal' friends and family.  And when that extreme experience constitutes family life over time.... years, even.... that is when caregivers become secretive.  They give up on explaining their lives. 

I was reminded today that there are tribes within tribes of caregiving. The extreme end of the caring spectrum is so different, so inexplicable that it's nearly impossible for anyone to comprehend it who is a stranger to it. But I also realized that's OK. We have each other and we belong to many tribes. I was also reminded that caring for someone with severe disabilities is very different from caring for someone whose needs are less apparent. And all of us on some days, just want to be called just kids and Moms, me included!  

Saturday, 30 June 2018

What The Power of Kindness Means to Caregivers

I read books in different ways. Sometimes I devour a mystery on the beach in a single day. Other times, I savour ideas slowly over time, bit by bit. 

I finished Dr. Brian Goldman's The Power of Kindness a couple of weeks ago, but I've had a long time to mull it over. I'd seen the pre-release notices about the book and was excited to read it. I've always believed that the connection between the theme of kindness and caregiving is a vital topic for anyone who cares about social inclusion and community. So, it was on the evening of April 27th that I settled into a pew at Ottawa's Christ Church Cathedral for Dr. Goldman's Writer's Festival book launch. It was a sold-out event for good reason. We were enthralled, sometimes shocked and at other moments delighted by Dr. Goldman's stories of human kindness discovered the world over. 



What interested me most was the story of what prompted him to write this book. Brian Goldman is an emergency room doctor when he's not hosting his popular CBC radio show, White Coat, Black Art. One evening in his crowded ER, a family arrived. A woman was in the last stages of a degenerative disease and her husband and adult children had brought her to die in hospital when they realized they could not provide adequate comfort care at home. Goldman was stressed that night and was abrupt with the family, perhaps even rude. The woman was admitted and shortly afterwards, she died. Weeks later, a letter appeared on Dr. Goldman's desk. It was from the husband of the woman, asking for a meeting. The family wanted to address Dr. Goldman's behaviour in the ER and they wished to forgive him. Goldman took the meeting, tears were shed and the author's quest began, both to locate the roots of his own (lost) kindness and the nature of some of the world's kindest souls.


Every chapter of The Power of Kindness tells a story of someone whose life and work exemplifies caring and empathy. Like Goldman, I was seeking clues to my own capacity for kindness in each story and because I'm already sure that caring is in my nature, I gravitated to chapters about extraordinary 'empaths - heroes of caring kindness. I learned about Mackin, a New York bartender, who has taken on the role of convening and supporting 9/11 first responders. Mackin understands that bringing together people who have shared a painful, life-changing experience requires stepping back without judgement. If the customers don't want to talk, "You leave them be", he says. "A good bartender orchestrates", Mackin muses. "He makes sure the right people sit next to each other." So, I learn, kindness isn't always about inserting yourself in a social situation. Often, it's about setting a scene and then stepping back.

For me, the most moving stories in The Power of Kindness were about those people who are working face to face with marginalized individuals (as in the case of a Brazilian woman who created an extraordinary friendship with a homeless poet) or Mary Gordon who founded Roots of Empathy, a teaching programme for elementary school children. Gordon's model is simple but powerful. She links new parents living locally with classes of young children. Regular visits of parents and baby demonstrate intimacy, growth, nurturing and natural care. Naomi Feil was another of Goldman's exemplars of kindness and her story is truly inspiring. Feil grew up in a nursing home (her parents worked there) and there, she began to discover ways to communicate with the 'lost souls' of dementia and Alzheimer's. Her approach, called 'validation therapy', is poignantly demonstrated in Goldman's book. It's the chapter that made me cry.

I was mystified but intrigued by the author's decision to include care robots - one of Japan's responses to their national problem of a rapidly aging population, dearth of caregivers and widespread social isolation. I certainly don't want a robot caring for me or anyone I love, but Goldman's description of how some folks perceive human kindness in electronics was interesting, especially because some Japanese Alzheimer's patients apparently become animated in conversation with robots, but not with humans. I wondered about the cultural differences inherent in kindness and also what mysteries of authentic communication with dementia patients can be revealed through robotics.

I recommend The Power of Kindness to anyone who, like me, is fascinated with the topic of empathy especially as it relates to natural care. And a great companion text for me was On Kindness by Adam Phillips and Barbara Taylor - it's an exploration of the history of human kindness and why it's become our guilty pleasure and contemporary taboo. As they say, "Today, kindness is only for those who don't have the guts to be anything else." Where you stand on the subject of kindness, compassion and empathy, these books give us reasons to bring kindness out of the closet as a bona fide virtue - one that we can claim as central to family caregiving. 


Tuesday, 26 June 2018

Dementia Care in Canada - New News



A new report was released today about the state of dementia care in Canada. It's frightening.

The Canadian Institute for Health Information (CIHI) partnered with the Public Health Agency of Canada and they estimate that 402,000 seniors over 65 had dementia in Canada between 2013 and 2014. That's 7.1% of all seniors and two thirds of those were women.

Perhaps the most startling statistic is that 76,000 new cases of dementia are being diagnosed every year now and that represents 14.3 new cases per every thousand Canadians aged 65 or older.

It is clear that the burden of care falls to families. And this report tells us what we already know: dementia costs caregiving families in increased hours of unpaid work (26 hours per week of care for dementia patients compared to 17 for healthy seniors) , heightened distress and increased out-of-pocket costs. Canadian caregivers paid a whopping $1.4 billion dollars for their loved ones with dementia in 2016.

So what does the report recommend governments and communities do to support caregivers?
"Providing effective support to those living with dementia in the community and to their families is an important component of dementia strategies. If caregivers receive help to better manage the complex needs of the people they care for, hospital visits or transitions to higher levels of care may be improved. In addition, caregivers would be enabled to maintain their caregiving activities and have a personally rewarding experience."
We need support now, but so do family doctors. The front line of dementia care is in neighbourhoods, in family homes. And we need options for supported living once our relative's needs exceed what we can provide at home. Health care settings must be monitored to decrease the current institutional dependency on anti-psychotic medications (in the absence of psychosis) and restraints. 
People with dementia cannot look after themselves. I am 63 this year - will I be one of these statistics? Will you? We need a strategy to address dementia care in Canada now and that strategy has to be robust enough to support caring families in huge numbers down the road. We have statistics and we have projections. So, let's act. 

Tuesday, 19 June 2018

THERE'S NOTHING QUITE LIKE A PUPPY

Two weeks ago, my husband Jim and I drove a couple of hours west from our house into the countryside where we pulled into the driveway of an old, red brick farmhouse. We were greeted by a symphony of barking. In a few minutes, we would be introduced to the newest member of our family - a golden retriever puppy. Meet our Daisy! 


We are in the thick of puppy heaven, so naturally I began to think about the role of pets in caregiving. I did a bit of online research and discovered a wonderful charity that's active in the USA and Canada called Pet Partners. I decided to get in touch and ask them some questions about how pets can foster wellbeing in patients and their caring families. Here's what I learned. 



What are the services that you offer to patients and families who would benefit from Pet Partners? 

We encourage individuals seeking therapy animal visits to work with a healthcare provider to see about setting up therapy animal visits. For insurance and liability reasons, visits from Pet Partners therapy animal teams must be coordinated through a care organization, with a staff member for the coordinating organization present during the visit. We have a section of our website where care organizations can request volunteer team visits: https://petpartners.org/learn/pet-partners-at-your-facility/add-a-volunteer-opportunity/ NOTE: Call your nursing provider or seniors center and ask them to request a visit from a Pet Partners therapy animal if you think it would be good for your family.

Do you offer home visits or only institutional visits? 

At present, home visits are possible, but they must meet the guidelines described in the paragraph above. The teams making home visits we know of currently are doing so through hospice or home health agencies. We hope that we might be able to offer more direct coordination of home visits in the future.

Does your Walk With Me program offer walking with pets and seniors in their neighborhoods? 

For the liability reasons mentioned above, we recommend that all visits, including Walk With Me visits, be coordinated with a care organization. However, as we expand the Walk With Me initiative, we hope to resolve these issues and make this initiative something that can be offered on a more informal community basis.

Is there anything else I should tell family caregivers about Pet Partners?

Therapy animal visits can offer measurable health benefits both for people dealing with health issues and for caregivers. While research shows that the presence of an animal, including a family pet, can be beneficial in many circumstances, Pet Partners therapy animal teams come with education, screening, and registration that confirms their suitability to provide animal-assisted interventions safely, and liability insurance to reduce risk. More information on the research underlying the benefits of the human-animal bond is available HERE

Pet Partners is the largest therapy animal organization in the United States (it's in Canada too!) registering therapy animal teams (a team is one human handler and one animal) to provide animal-assisted interventions. We register nine different types of animals: dogs, cats, equines (horses, ponies, and donkeys), rabbits, guinea pigs, rats, birds (primarily in the parrot family), miniature pigs, and camelids (llamas and alpacas). We are currently the only national therapy animal organization to register many of these species. Our volunteer therapy animal teams make over three million visits each year, offering the benefits of the human-animal bond to people in a variety of healthcare and therapeutic settings, as well as our Read With Me initiative promoting childhood literacy, and our Walk With Me initiative promoting movement for health. We are also expanding our program internationally. 

I am already benefitting from the joys and mental health benefits of being with Daisy. She makes me laugh and I'm sure lowers my blood pressure. I've also met many of my neighbors. I can attest to the fact that puppies are an antidote to social isolation and grumpy dispositions! They are always friendly and they're always in a happy mood. 

If you or your loved one don't want the responsibility of pet ownership, but would enjoy an animal visit occasionally, consider asking to 'babysit' a neighbour's cat or well behaved dog for an hour once a week. Being with our furry friends is good for the soul. 

Thursday, 14 June 2018

WHY FATHERS CHANGE EVERYTHING (FOR THE BETTER)


THIS HAPPY FATHER'S DAY MESSAGE IS FOR YOU IF YOU:

1) Are a Dad
2) Are a Dad of children with Disabilities
3) Are a son caring for your parents or grandparents
4) Are a Dad whose son or daughter is caring for you
5) Are a Dad whose wife is caring for you
6) Are a single Mom who does double duty as a Dad

WHY FATHERS ARE SO IMPORTANT

According to Dr. Gail Gross who writes for the Huffington Post, it is impossible to over-estimate the importance of dads. For example, girls who have good relationships with their fathers tend to do better in math, and boys who have actively involved fathers tend to have better grades and perform better on achievement tests. And well-bonded boys develop securely with a stable and sustained sense of self. Who we are and who we are to be, we are becoming, and fathers are central to that outcome.

 Research indicates that fathers are as important as mothers in their respective roles as caregivers, protectors, financial supporters, and most importantly, models for social and emotional behaviour. In fact, a relatively new structure that has emerged in our culture is the stay-at-home dad. 

Today, a new report on dads and caregiving was released, just in time for Father's Day. Apparently men want to do more caring, but can't because of work and stigma. Insufficient paid leave and the worry about others' perceptions if they prioritize caring over work were the barriers to caring more. 

There are many pressures on families today. I hope that future generations will prioritize caring over work and I hope that fathers will continue to be supported in their critical role as nurturers. Happy Father's Day!


Thursday, 7 June 2018

ARE YOU DRUNK OR JUST TIRED?

Ask someone who cares for a loved one, "How are you?" Chances are, they'll answer "I'm fine", but if they were being completely honest, they'd probably confess, "I'm exhausted." And that's a scary, dangerous truth. It's dangerous because sleep deprivation has the same effects as being drunk. 



No wonder I lost my car insurance in 2004. They said I'd had too many minor accidents. It was the worst year of our lives. Nicholas' unrelenting pain caused him to wake every half hour. He needed us to reposition him for comfort on top of managing medications, seizures and tube feeds. No one was hurt in my long list of fender benders, but when I read a study showing that 100,000 crashes are caused by fatigued drivers, I felt plain lucky because I was one of them. It could have been so much worse.

But driving isn't the only important responsibility that is impaired by exhaustion. Caregivers have medications to give, food to prepare, bills to pay and care to coordinate. Sometimes we need to physically lift our loved one. These are tasks that could go seriously wrong, causing bodily harm and even death to the person in our care. Exhaustion is no joke.



I remember telling my doctor that I was worried about myself. I worried that I would make a medication error or that I would fall asleep behind the wheel with the children in their seats behind me. He didn't have any answers. There are no magic bullets for fatigue when caring for someone whose needs are 24/7.

The only thing I can suggest to fellow carers is to arrange respite if and when possible. And say 'yes' to every single offer of help. If you're lucky and can get a nap during the day, leave the dishes and go lie down. Do it for safety's sake. Slow down in the car and double check the medications. For tired caregivers, that's the best we can do.