THE CAREGIVERS' LIVING ROOM - A Blog by Donna Thomson
Donna is the Special Advisor for Caregiving at Tyze Personal Networks and is a Senior Advisor to the PLAN Institute for Caring Citizenship. Donna extensively writes for magazines on the topics of family caregiving.
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!
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.
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!
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 (some are for doctors and some are for patients and caregivers). Browse HERE.
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!
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!
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.
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.
About a year before Mom died, I wrote thisfrom her hospital room:
Mom was hospitalised just prior to Christmas for respiratory distress. A young, bespectacled respirologist strode into the room. He smiled at Mom and began to make notes on his clipboard. "Have you ever had trouble breathing before?" he asked. "Once when I was about twelve, I was at camp..." Mom began. My eye was drawn to the doctor's foot. His polished loafer began to tap rapidly, but his smile remained fixed.
I thought, "he is trying to have a business conversation here. But Mom thinks this is PERSONAL!" I jumped in and re-directed Mom to her more recent health history.
Very recently, I observed similar behaviour from a physician who was treating our son in hospital. The doctor was professional, knowledgeable and pleasant. But his foot tapped excessively during our conversation, to the point that his knee was shaking. This doctor appeared to be listening and he answered all our (very good) questions. But it was hard for me to focus on his words because I was so distracted by his foot and leg.
Here’s what that tapping foot meant to me: “This doctor is worried about his next patient or maybe he’s late for a meeting.” “I need to hurry up and ask my questions. What were my questions again?” “I’m sorry I’m taking up so much time.”
"The secret language of feet can reveal a great deal about our personality, what we think of the person we're talking to and even our emotional and psychological state, they are a fascinating channel of nonverbal communication."
"Compiling this research has been a revelation. The reason our feet may be giving us away is that they are part of the body from which we have the least internal feedback."
"The weird thing about feet is that most people know what they are doing with their facial expression, they may or may not know what they are doing with their hands but unless we specifically think about it, we know nothing about what we are doing with our feet."
"Shaking your legs communicates anxiety, and when you shake those legs you inevitably shake those feet. However, your feet can get you into trouble with your body language all on their own. Tapping your toes is one way to show that you’re in a hurry and anxious to get moving. You may want to tap your toes if you’re trying to get someone’s attention and don’t want to say something rude. It’s a little way of signaling that you’re feeling time pressured without yelling or engaging in sarcastic eye-rolling. However, you do so at a risk. Either you’ll be ignored or still perceived as rude. Better to handle your feelings of annoyance over being made to wait by politely voicing your concerns."
So here’s my prescription for doctors: For better outcomes, stop tapping your feet when in conversation with your patient and his or her family.
My sister Karen Thomson painted this portrait of our Mom and she titled it Partly Who She Was. Karen painted this from a photo that we took of Mom just as she got out of the car at Hovey Manor, a lovely country hotel in the Eastern Townships of Quebec. We'd taken her there for a special treat: dinner and an overnight stay in a large suite overlooking the lake. As Mom stretched her legs after the long drive, she looked around at the half-familiar hotel grounds. In her face, my sister and I saw the sharp contrast between her keen observation and her judgement, all contained in a thin shell of frailty. We took this trip in the early spring of 2018 and she died in mid-August. Aged 96.
Since Mom's death, my sister and I have talked a lot about who Mom was and how she shaped us. I have spent many hours sifting through the many unlabelled splinters of my memory trying to make categories of 'good' and 'bad'. But it's just too hard. I love my Mom, loved her. But she was a person of extremes and she was wilful. As a caregiver, we are supposed to distill our feelings down to those of kindness, forgiveness, compassion, right? But often it's not that simple.
I'm away right away right now with Jim, on our annual winter getaway to Cat Island, Bahamas. This is the one time of the year when I read a lot of fiction. The book on my lap now is Warlight by Michael Ondaatje (I highly recommend it - it's a wonderfully rich read and a great story). Nathaniel, the main character, has a complicated relationship with his mother. Here's how he describes it: It had taken me a while to realize that I would in some way have to love my mother in order to understand who she now was and what she had really been. This was difficult. Mom, I miss you. I love you.
Want to laugh at black humor? Read anything by David Sedaris. I’ve just finished his latest ramble-in-a-book-form titled ‘Calypso’. It’s very funny when it’s not causing me to blush or wince. I loved it.
Sedaris saves his most barbed tongue-lashings for service providers – at airports, restaurants, in taxis and in hotels. “How was your trip in today, sir? Good? Awesome!” or “Hot enough out there for you?”
These kinds of ‘fake-friendly’ conversations drive the author nuts and they have the same effect on me. Here’s what he says about one young woman who repeated a greeting she’d learned in a staff training weekend away:
I just wanted to get a rise out of her to feel some kind of pulse. I knew that the young woman had a life. She’d gone to school somewhere. She had friends. I didn’t need a fifteen-minute conversation, just some interaction. It can be had, and easily: a gesture, a joke, something that says, “I live in this world too.” I think of it as a switch that turns someone from a profession to a person, and it works both ways. “I’m not just a vehicle for my wallet!” I sometimes want to scream.
This passage made me think of all the times I’ve cringed or seethed privately in doctors’ offices, or hospitals or clinics or in the offices of social workers. When conversation is inauthentic or it’s being managed to an end well before anything meaningful is expressed – no one is cared for. The patient and caregiver make their exit without hope of healing because no human connection has been made.
David Sedaris provokes meaningful (or at least unexpected) conversation by being outrageous. But we caregivers don’t have that luxury. We need natural and meaningful conversations with our families, friends, co-workers and our service providers. Because we don’t have the time or energy to waste on any phony platitudes.
So my message to caregivers today is, call them out. Speak up and say something the next time you are met with empty niceties when what you really need is a meaningful exchange. When a service provider asks (while flipping through papers or looking at a computer screen), “How are you?”, answer “Terrible. Last night I slept for 37 minutes. What about you?”