Monday, 20 May 2019

THE TIME HAS COME FOR A SPECIAL OFFER


Dr. Zachary White and I both received our author's boxes of books last week (so exciting!). That means it's time to order THE UNEXPECTED JOURNEY OF CARING: The Transformation From Loved One to Caregiver. If you buy a copy and send me an image of your receipt (email me at [email protected]), I'll send the first 100 readers a signed book plate sticker to inside the front cover. 

Here are some quotes about our book from leaders in the family caregiving movement: 

"Finally! A totally honest assessment of the caregiving experience. Whether you are a 'newbie' or a long-term caregiver, this book illustrates all we have in common and gives us guidelines to cope wherever we are in our journey." 
- Adrienne Gruberg, founder and president, The Caregiver Space

"The Unexpected Journey of Caring provides insights into the mind and heart of the family caregiver. After reading this book you'll better understand the caregiving emotions and thoughts that can feel so confusing and lead to so much guilt!" 
- Denise Brown, founder of www.caregiving.com and the National Caregiving Conference

"Nobody grows up planning to be caregiver, but many of us will become one and sometimes when we least expect it. Thomson and White bring powerful insights to help us understand what it means to be a caregiver and how to truly support those of us who will travel this unexpected journey."
- Samir K. Sinha, director of geriatrics, Sinai Health System and University Health Network, Toronto; health policy research director, National Institute on Aging (Canada)

"Thomson and White expertly describe the effects of being a caregiver, including effects one might not be aware of, and the transformation that takes place in our lives because of our caregiving roles."
- Pamala D. Larsen, PhD, RN, CRRN, professor emeritus, University of Wyoming, editor of Lubkins Chronic Illness: Impact and Intervention

"The Unexpected Journey of Caring is most remarkable because it is not only practical but also philosophical. It represents a definitive guide to understanding the phenomenon of caregiving within the context of human relations."
- Dr. Aaron Blight, founder, Caregiving Kinetics

THE UNEXPECTED JOURNEY OF CARING is available from all major online booksellers everywhere. 
In the USA: Amazon, Barnes and Noble
In Canada: Amazon and Chapters Indigo
In the UK and rest of the world: Amazon
The book release is on June 8th, so pre-order your hardcopy or kindle edition now for early delivery. 

I really look forward to hearing your thoughts about how we've described the personal transformation in caregiving. Let the conversation begin! 


Saturday, 11 May 2019

Motherhood

Tomorrow will be my first Mother's Day without my Mom. I'll probably wake up in the morning and think, "Oh, I must call Mom and ask if she liked her flowers! I must tell her that I'm coming over later." And then, I'll remember. I know this will happen because something like it happens nearly every morning since Mom died in the morning, last August 16th. Tomorrow, my husband and children will wish me a Happy Mother's Day. We will raise our glasses of sparkling wine at brunch in a toast to all the mothers in our family,

This week, I've been thinking a lot about mothers in caring - whether it's being mothered, or it's us caring for our aging Moms or it's us caring for our children. Mothers in the family circle of care. Last week I gave a keynote for the McGill Council on Palliative Care in Montreal. Then yesterday, I attended the National Summit on Disability in Ottawa. As everyone wished each other, "Happy early Mother's Day!", I was thinking of the role of mothers in families - how we care for our own across ages, how we model love and nurture trust, how we as mothers, hold hands and nod in recognition of each other's small triumphs and sometimes sad shared experiences. 

No other story in Canadian history demonstrates the dichotomy of strength and vulnerability in motherhood as that of Marching Mothers® Desperate to find a cure for polio, a highly contagious, disabling and sometimes fatal disease, mothers across Canada joined a North America-wide fundraising drive towards research.
Known as the Marching Mothers®, these dedicated volunteers went door-to-door in their neighbourhoods, collecting donations for the March of Dimes. From celebrity endorsements, to local media campaigns, to the ringing of fire alarm bells from the centre of town, many in their communities got involved. Women canvassed their neighbours carrying pickle jars or canvassing kits. Homes welcoming Marching Mothers® turned on their porch lights to signal their support.

Over the years, this simple, community-based process raised millions of dollars for polio research and rehabilitation. It supported the research of Dr. Jonas Salk, whose polio vaccine was released in 1955, putting an end to the epidemics.
Mothers marching, some with babies, some with their children - welcomed by the warmth of neighbours' porch lights - there is something sacred about these images. They are a powerful reminder of what we can achieve together. Loving our mothers and being mothers constitute journeys that embody the full range of human emotion. Happy Mother's Day, everyone. Here's to us.





Tuesday, 9 April 2019

Natural Caring: A New Way to Think About What We Do Best Everyday




Today I listened in to a podcast called "Caring Counts: A Celebration of Natural Caring" featuring Canadian social innovators, Paul Born, Al Etmanski and Vickie Cammack

Vickie and Al are champions of natural caring, which they define this way: Natural caring is love in action. It is freely given. It involves a relationship with someone or something we care deeply about. It is flexible and responsive to the situation. It is reciprocal, with meaning for both the giver and the receiver.

Paul Born is the co-CEO of Tamarack Institute and the Director of Vibrant Communities. If you happen to be curious about social change in Canada, he's your man. At Tamarack, there is method to his madness in placing natural caring alongside innovations in reducing societal ills such as poverty, loneliness and disenfranchisement. Al and Vickie's roots are in the disability movement - they are international thought leaders in social innovations leading to the belonging and empowerment of people with disabilities and their families. 

Vickie and I have written about natural caring before, but I began to think more deeply about it today. Paul asked, "what about people looking after loved ones at home who are really suffering under the burden of care? What about people who are struggling alone? How can a movement of natural caring help them?"

Vickie answered this way, "There is no doubt that in natural caring, there is suffering. There is even sometimes despair. But I would ask family caregivers to think about what they do for their loved one that others (including paid professionals) cannot do. Then I would suggest that they ask for support to do those things. Because often, there is a common misconception that medical professionals can care 'better' (so we should just organize respite) or if we are very tired, it's because we haven't practiced self-care properly." 

Then Paul asked if it's ever possible for paid caregivers or medical professionals to demonstrate natural caring. Vickie told a story about her nephew who is a paramedic. One day at work, he was transferring a patient from one long term care hospital to another. This man had not been outside for six months. So Vickie's nephew and his partner pulled to the side of the road near a beach just outside Vancouver. They opened the ambulance doors and lowered the stretcher on to the sand so the patient could feel the wind and sun for a few minutes before they set off again for the new hospital. 

Some people would call this kindness and it IS kindness in caring. But if we limit our thinking about natural caring, we are missing something important, said Al. Natural caring is what we all have in common when we enter into a care relationship with another. The daughter who cares for her mother with dementia has natural caring in common with Vickie's nephew. It is the unleveraged power in our society that no one is talking about ... except Al, Vickie, Paul and now you and me. 

Describe to your friends, neighbours and extended family members what you do for your loved one that no one else can. Ask for their help and support in doing what only you can do. And finally, talk about #NaturalCaring on social media. Because this is a movement and it starts with us. 

Our new book is now available for pre-order from all major booksellers! 



Sunday, 7 April 2019

FREE TOOLS FOR SHARING HEALTH INFO WITH YOUR DOCTOR

This is the best appointment information form for patient and caregiver visits to the doctor that I have ever seen! You can view and print it HERE. The folks at CognisantMD partnered with patients and caregivers to develop their suite of FREE tools for health care engagement. Browse HERE - these are exactly what we need! 

 I suggest that you fill in one copy for your appointment and bring another blank copy to give to your doctor. Encourage him or her to share it with other patients! 


Wednesday, 3 April 2019

THE ESSENTIAL TRUTHS OF CAREGIVING - THE LIVING LIST

The other day, my caregiver best-friend-forever Rose and I were chatting online about the essential truths of caregiving. Rose has been a caregiver for 47 (yes, 47) years. I have been caring for the past 30 years. This is our list of essential truths. BUT this is a LIVING list and that means we would love for you to add your truths here in the comments. Let our list be just the beginning of all that we know to be true in caregiving! 


Image Credit: Caring.com


THE LIVING LIST OF TRUTHS

1) Nothing cures a crisis like a new, different crisis. 

2) If I happen to get a real rest and are lulled into relaxing, it's hard to come back into hyper-vigilant mode.

3) Weathering crises doesn't get easier over time, it gets harder.

4) The worst is when a NEW symptom crops up - something I've never seen before (and I always think of that Dorothy Parker line, "What new, fresh hell is this?"). 

5) When I'm on duty 24/7, I can keep going if necessary, but I do cry easily and I make lots of mistakes.

6) There is always one more thing.

7) Trust your gut. It's almost always right.

8) No one knows my loved one better than I do.

9) Sharing my journey with others who are in the same boat is the best coping tool.

10) Love is the great engine and energizer. 

Now, add your essential truths in the comments section! 

Thursday, 28 March 2019

How Caregivers Are Changing the Whole World

April 2nd is National Caregiver Day in Canada. To celebrate all of us and the work we do, I am sharing an article that I co-wrote with Dr. Zachary White whom you'll know from his wonderful blog, The Unprepared Caregiver. This piece was published by Open Democracy's Transformation E-Magazine. You can see it and other thoughtful articles about care and social justice HERE

How are we caregivers creating a new, better world everyday from our homes? This is how! Happy National Caregiver Day!  




Mention the word “caregiver” and what is the first thought that comes to mind? Older? Exceptional? Isolated and disconnected? Homebound and unemployed? Each of these stereotypes about care and caregivers is becoming increasingly outdated for the approximately 45 million people in the United States and 6.5 million people in the UK who’ve provided informal, unpaid care to a loved one in the last year, because family caregivers have already begun to transform how people care for one another.
By 2060, Americans 65 and older are expected to increase in number from 46 to 98 million, disrupting our current systems of managing care and all those impacted by care in ways that defy comprehension - including patients, providers, caregivers, families, economies and workplaces. Right now, caregivers don’t simply give care, they are also creators of dynamic communities of support and community-based care delivery systems. As agents of change and influence for those at the margins of society including the disabled, the chronically ill and the aged, informal (non-paid) caregivers are at the center of this nascent social revolution. But these innovations - born from love and connection - are largely overlooked.
Here are just some of the ways in which caregivers are the nexus of a growing ecosystem of care that includes government services, medical providers, neighborhoods, families, and non-profit organizations.

Caregivers are modeling how to integrate health care into daily life at home.

The convergence of love and necessity in caregivers’ lives makes them ideally suited to the role of innovator.
“As a caregiver to a son with complex medical needs, I possess a level of knowledge few people do. Our family has learned how to navigate life outside the hospital while using machines you find only in an ICU: a ventilator, pulse oximeter, a feeding pump and oxygen tanks. Whereas medical experts know how these machines sustain your life physically, many lack the experience of troubleshooting a ventilator malfunction while riding public transportation. This is a form of mastery gained exclusively from hands-on experience - an experience few health care professionals have had.” Mother to a son with complex medical needs.
Life is lived and care is enacted in between visits to formal health care providers. The innovation labs of a new, caring society are at home, where there are no “discharge” plans and no role-specific codes of conduct. These “privatized” but vital spaces of care necessitate more ongoing integration of caregivers’ experiences at home with people and services in the community to enhance the likelihood of innovation.
For example, Drew Ann Long is the mother of a child with disabilities and it was her frustrating experience of food shopping that led her to invent “Caroline’s Cart”, an adapted grocery cart for seniors and children with mobility impairments. When architect and innovator Barbara Alink tried to broach the subject of a walker for her aging mother, Alink’s Mom proclaimed, “Over my dead body, I’ll use one of those. They’re for old people!” So Barbara invented “The Alinker”, a neon yellow walking bike for people who eschew the traditional metallic frame. Today, the Alinker is the mobility device of choice for actress Selma Blair who suffers from Multiple Sclerosis.

Caregivers are leveraging new notions of community.

Caregivers’ identities are politicized - always. Caregiving can be viewed as a threat by those who know us best such as family, friends and work colleagues because care experiences challenge so many westernized assumptions about the (un)certainty and (un)predictability of life, our (in)capacity to control situations and outcomes that we didn’t anticipate and don’t want, and the value of (inter)dependence. By necessity, caregivers are creating new and dynamic connections beyond family, friends, and work colleagues for support.
Caregivers are much more likely than non-caregivers to go online for health-related pursuits, such as reading about others’ health experiences, finding others who might have similar health challenges, and posting questions and sharing health information and support. On Facebook, the greatest increase in users from 2011 to 2018 has been amongst those between the ages of 50 and 64; the second greatest increase was among users 65 years and older.
This increase in social media usage reflects a desire and need for the deepening of connections. This “caregiver effect” is a type of innovation because reaching toward others is more about connection and support than followership, subscribers, and likes. It’s about attempting to connect more deeply and authentically with audiences - online and face-to-face - who have similar care-based experiences for the purpose of information sharing, advocacy, and reciprocal personal and community support.
“When my dad started dialysis I had a safe and trusted place to get the information I needed. I could rely on others’ experience and get immediate support, even at 3 a.m.” —Lori J., a member of The Caregiver Space Facebook Group.
Caregivers understand the importance of thinking and acting collectively so they can leverage in-person support of family and friends more effectively. In 2009, Dr. Kathy Marshack created a Meetup group called “Asperger Syndrome: Partners and Family of Adults with ASD” in her native city of Portland, Oregon. Today, Meetups are in almost every US city. They exist to support most major disease or disability-family communities as well as to bring together individuals who share interests or hobbies in ways that may not be possible in face-to-face interactions.
The founder and CEO of Atlas of Caregiving, Rajiv Mehta, is helping caregivers to reimagine the world one care map at a time. Atlas CareMaps require no artistic talent. CareMaps consist of simple figures that represent a person’s web of relationships, showing who cares for whom and how. For many, this leads to improved care, decreased anxiety, and more confidence in managing their care. And when talking with others about their care map, the interconnectedness of community is revealed and made clear in ways not possible when community is divorced from those who are leveraging meaningful ways of creating connection for personal and communal well being.

Caregivers are instrumental in transforming health care systems because of their role as boundary spanners between “private” and “public” systems of care.

Our rapidly evolving health care needs and challenges must be based on emerging understandings of how formal and informal ecosystems of care interact.
Caregivers are drawing on their vast and deep health care experiences to advise on patient safety and health improvement by sitting on hospital advisory boards, patient engagement committees, and in community wellness non-profit entities. Nearly every hospital today hosts a Patient and Family Advisory Committee, or PFAC.
Family caregivers are now sought out as partners in health research. Their experience of navigating health systems from home to hospital and back again makes them invaluable partners in everything from identifying research questions to communicating scientific breakthroughs to patient and family communities.
For example, the Peninsula Childhood Disability Research Unit or PenCRU is a childhood disability research center in Devon, UK. PENCRU is world renowned as a center that seeks out authentic partnerships with family caregivers. The center’s home page features a clickable link titled “Submit Your Research Question" and interested parents are invited join a “Family Faculty” with members like Ian, the father of a young man with severe autism. Ian joined the family faculty in 2012 and in 2013, submitted his first research question related to testing strategies to treat the dental health needs of young people with developmental disabilities and behavior challenges.
The Caring Collaborative is a new and growing movement of women supporting women when medical needs arise. The model has three core elements: an information exchange using What’s App in which members share information about medical conditions and medical providers; a service corps of women who volunteer to provide hands-on assistance to other members; and small neighborhood groups that meet monthly to talk about health topics and personal concerns.
This more expansive and inclusive approach to well-being can transform caregivers from feeling like they are being acted on - waiting for doctors, appointments, bureaucracies and insurance decisions - to agents of change. In this shift, caregivers are more likely to see themselves and their situations as worthy motivations for engaging others now. Caregivers can positively disrupt ways of thinking that rely too narrowly on the outsourcing of care beyond our “assets” and networks of competency, social expertise, and care. Reciprocity is at the heart of how caring transforms community.
Caregivers don’t have the luxury of choosing only to communicate online or face-to-face; they must create ongoing opportunities to engage others for support, information and reciprocity across platforms depending on their needs. Care for ourselves and one another can’t ever be fully outsourced because it is an individual and collective process shaped by access to knowledge and experts, as much as it is determined by access to the knowledge and care of the everyday experts of our daily lives.
Community and care are inexorably linked. Care can never fully be rendered only by expert providers in formal settings, but by a growing recognition that care is a democratic act that is about what we “give”, what we “receive,” and what we can “create” together.
Donna Thomson and Zachary are co-authors of "The Unexpected Journey of Caring: The Transformation From Love One to Caregiver" (Rowman and Littlefield, June 2019). Their book is available to pre-order from all major booksellers. 


Thursday, 14 March 2019

WITNESSING DEEP, NATURAL CARE IN THE HOSPITAL


-->
A lot of what I read online about patient care and support for caregivers is negative. I read about compassion fatigue running rampant in hospitals. Or about physician burnout. I read about how, in our society today, there is no place for kindness or caring.  It is almost as if the care that occurs within the walls of our homes is our guilty secret.

Our son Nicholas has been in the hospital over the last couple of weeks and I can tell you, kindness is still alive. Here is what I witnessed:

In the ICU waiting room, there are greeters who man the communications with the nursing station. They guide grieving families to quiet rooms and make cups of tea for tired loved ones who may have come straight from the airport to be close to someone who is seriously ill. The volunteers are mostly older ladies. They smile and they all have something I will call the gift of compassionate conversation. They do not intrude, but if you make eye contact, they will come over, sit down and ask how you are. They are watching and waiting for opportunities to be kind.



Sometimes younger people volunteer in this role. I notice that on the whole, they do not seek out conversation, but they respond in a warm and personable way when asked a question. Perhaps they lack the social confidence that the older ladies have – perhaps they are shy about navigating the tricky waters of emotion (terrible worry and often grief), support, and privacy. After all, there are boxes of Kleenex on every side table. This is a place for tears and whispered conversation. The kind of human caring that these ladies give in the waiting room is what I will call natural caring. It is a rare talent – a skill honed over years of experiencing one’s own life challenges.

I witnessed extraordinary caring in physician care, too. When I heard the intensivist say, “I will treat your son as my own.” Or when the surgeon instinctively knew that a young man might need a jokey approach to release tension. He greeted Nick this way: “Hi cowboy! I’m your surgeon and I’ve done my homework!” Or the nurse who, days after her shift with Nick, came searching for me to ask, “How is he? I am so happy to know he’s better!”

Kindness is freely given in the world of intensive care. I wish we could bottle it for all places and all times. The natural care that I witnessed should be identified, celebrated, coached and nurtured. If you have experienced extraordinary kindness in the hospital or in your community, please share your stories. Let us reward those who have the rare gift of natural caring.