“It’s the club that no one wants to join.”
If you are caring for or have cared for a loved one with dementia, you may find solace in this touching documentary. Curl up with a cup of tea and some tissues, and be reminded that there are others out there going through similar experiences. It may not be a club you wanted to join, but you may find some comfort there.
In Part I of this post, I will be reporting on my explorations reading ‘The Worry Workbook : CBT Skills to Overcome Worry and Anxiety by Facing the Fear of Uncertainty’ by Melisa Robichaud and Kirstin Buhr (New Harbinger, 2018). In this timely book, Robichaud and Buhr provide people who worry with a lot of real tools for overcoming anxiety. They start by outlining the difference between fear and anxiety: Fear is, for example, spotting a rattlesnake in my line of vision (protective); anxiety is, rather, consistent rumination about stressors in my environment, and, especially, feelings of doubt or uncertainty about my ability to cope with these stressors.
Supposing you feel worried a lot lately: what can you do? Well, you can start by assessing the degree of your anxiety by taking a quiz, such as the Beck Anxiety Inventory found at:
https://www.beckinstitute.org/beck-inventory-and-scales
Interestingly, Buhr is Directing Psychologist at the North Shore Stress and Anxiety Clinic, right in our backyard!
This is a very helpful resource for people who suffer from anxiety, and can be found at:
I might then set a goal for how I will cope with my anxiety, but a SMART goal:
S-Specific
M-Measurable
A-Attainable
R-Relevant
T-Timely
For example, I could set a goal to go for a walk every week, because exercise is a very effective treatment for anxiety. I’d have to narrow it down to a set time, day of the week, and duration.
I could also use the FFF approach to dealing with anxiety, which stands for:
F-Face it
F-Fix it
F-Forget it
Through a range of behavioral experiments (this is where I test out a new behavior) I eventually realize that I can, in fact, cope with the ‘slings and arrows’ life throws at me.
I could, for example, change a very common safety behavior such as checking locks. I could allow myself to check the locks only twice, and, when I do so, really focus, so that later on I will remember that I did, in fact, check them.
Behavioral experiments easily lend themselves to all sorts of compulsive behaviors. Just be prepared, if you read this book, to invest a sizable amount of time completing exercises. Also, remember that the book is an adjunct, and not a substitute for, professional help, if that is what you think you need. I haven’t finished the book yet. I’m taking it slow and not rushing it because that is how I think I will get the most out of it.
As the French say: ‘Bon Courage!’ (which means: ‘Have Courage!’)
Calm Pond
We have been so inspired lately by Susanne White aka Caregiver Warrior’s articles. “I Was Worried I Was A Bad Caregiver” was published in the latest edition of the Family Caregivers’ Grapevine, and today we’re sharing White’s free e-book: The Caregiver’s Little Guide to Survival. This is a must-read for caregivers, full of tips and inspiration for your journey.
In this post, I will write about a man who is a true optimist and somehow, despite serious challenges, manages to stay on ‘the sunny side of the street’. This man is none other than actor, writer and lobbyist Michael J. Fox, whom you may know from the 80’s hit movie ‘Back to the Future’, or the show ‘Family Ties’ (in which Fox plays Alex P. Keaton.)
In 1998, Fox announced his diagnosis of Parkinson’s Disease (PD), a degenerative neurological condition. Fox was very young at the time, and the diagnosis came as a shock to him.
Truly, Fox enjoys life and lives it to the fullest. Some of the highlight of his life are: swimming with sea turtles in the Virgin Islands; spending summer break in a villa in Provence; toasting Lance Armstrong at a post-victory Tour de France party in Paris; sitting beside boxer Muhammed Ali who amazed him with magic tricks; getting help from actor Christopher Reeve in the start-up of his Michael J. Fox Foundation; and last but by no means least, bringing up four beautiful, talented children.
In his book ‘Lucky Man’ (Hyperion, 2002), Fox credits his grandmother as a kind of muse to the budding young actor. He writes:
…” Nana, the matriarch and wartime clairvoyant, possessed an essential nature that hinted at the possibility of escape, of transcending life’s limits. She delighted in my accomplishments and eccentricities, always encouraging me to believe in the power of my dreams. When others in the family would express doubts about my direction, she was my staunchest defender and greatest champion. She’d laugh off their concerns with a wink at me, as if we both knew something that was beyond the understanding of others..” (p.40)
Fox also mentions how, at the start of his acting career, he found another mentor. This mentor, for him, was as much of a strength factor as his grandmother had been in childhood. Those of us who are truly fortunate find people like these in our lives who inspire and motivate us to follow our dreams, and never, ever, give up.
In Fox’s book ‘A Funny Thing Happened On the Way to the Future: Twists and Turns and Lessons Learned’, (Hyperion, 2010), Fox advises:
”Being in control of your destiny is a myth—and wouldn’t be half as much fun anyway. Pay attention to what’s happening around you. Read the book before you see the movie. Remember though while you, alone, are responsible for your own happiness, it’s still okay to feel responsible for someone’s else’s.”
In a sage-like way, Fox borrows from Confucious to advise people to wait if they aren’t sure about something, that eventually “all will be revealed. This advice has served me well”, he writes.
Fox also mentions Elizabeth Kübler-Ross’s ‘On Death and Dying’, and the five stages of grief: denial, anger, bargaining, depression, and acceptance.
It is truly extraordinary for Fox to assert that: “ the ten years since my diagnosis have been the best ten years of my life, and I consider myself a lucky man.”
What encapsulates this quote especially is when he describes an epiphany he had one morning:
“…at the turn from our bedroom into the hallway, there was an old full-length mirror in a wooden frame. I can’t help but catch a glimpse of myself as I pass. Turning fully towards the glass, I consider what I see. This reflected vision of myself, wet, shaking, rumpled, pinched, and slightly stooped, would be alarming were it not for the self-satisfied expression pasted across my face. I would ask the obvious question: “what are you smiling about?”, but already I already knew the answer: “ It just gets better from here.” Learn more about this book here: https://www.amazon.ca/Funny-Thing-Happened-Way-Future/dp/140139518X
In 2000 Fox began lobbying for advances in stem cell research, which consists of: “cells created from the in-vitro process, that are used for research in finding a cure for PD.”
Such is what reading Fox’s books was about for me—an education. Not only learning about this devastating illness, but also about how someone goes about living life well, in spite of everything else. His books would enlighten those with loved ones with PD (as is my experience, my brilliant uncle, a talented surgeon, had PD), or with those involved in advocacy or lobbying. Or, of course, just to get a glimpse of someone with such great courage and optimism, qualities not only valued but essential survival skills in this century, and that serve as an example to us all; is reason enough to read his books.
(Note: Fox is also known for the show ‘Spin City’ (2000), a show he both starred in and produced.)
Calm Pond
These helpful tips on the art of saying no came from : ’Hiding in the Bathroom: An Introvert’s Roadmap to Getting Out There (when you’d rather stay home)’, by Morra Aarons-Mele (2017).
Of all the above techniques, my personal favourite is #3.
Oh, and if you do say no, you have the perfect right to change your mind.
Hope this helps,
Calm Pond
How do you tune into your gut feelings when it comes to boundaries? We always appreciate hearing from our readers!
With running around to health appointments, making meals, and frequent checks on a loved one’s safety, you might be exhausted by the end of a typical week. Including some creative time in your day can be truly refreshing. Reading poetry, colouring with pencil crayons, or listening to music gives your brain a rest from all that hard work.
You are invited to soothe your frazzled mind with some words from Hafiz, a delightful Persian poet from ancient times. Get a glass of water with fresh lemon, or your favourite tea- and sit back. Unwind.
I hope some of these quotes inspire you … and give you a chance to pause and breathe.
“Here soar Not with wings But with your moving hands and feet
And sweating brows – Standing by your Beloved’s side
Reaching out to comfort this world with your cup of solace
Drawn from your vast reservoir of truth.”
― شمس الدین محمد حافظ / Shams-al-Din Mohammad Hafez, The Subject Tonight Is Love: 60 Wild and Sweet Poems of Hafiz
“Your heart and my heart are very, very old friends”.
“What one heart can do for another heart- is there any beauty in the world that can match this?”
West Vancouver library and North Van City Library both carry several Hafiz books translated into English, such as: The Gift, The subject tonight is love, I heard God laughing: poems of hope and joy.
https://westvanlibrary.bibliocommons.com
http://www.nvcl.ca/
-Karyn
Tell our readers a little about your journey to writing this book. What prompted you to start?
When my caregiving years ended in 2011, I thought I wanted to get back to my life-interrupted. But I moped, I fiddled, and I knew I was in a stall. People said I was grieving. I knew it was more than that. Those old goals belonged to a version of myself that was gone. Caregiving had transformed me. It was Judi, my twin and co-caregiver (daughter on deck while I was daughter at a distance) who could feel my malaise and offer a way out. “You are a writer,” she said, “And you have a story. So tell it. Writing a book is your new normal.” So I began.
It was a challenge. I had ten years of hoarded information that filled the room that had once been where my parents stayed on their respite visits to the Coast and now was my writing space. It was full of memory. The records of many care conferences covered a carpet stain that recalled the incident of the collapsing commode. The visitors books we kept for years became the top of my year by year paper piles. On every wall space, a forest of sticky notes grew. It was a timeline to help me recover details of what and when. Names of specialists and other important people were pink, my flashbacks to troubled times were captured in fluorescent yellow, and those events that looking back seemed to be turning points were lime green. And so I pieced together the details of what had been a fog. Gradually in the first several months I as able to put order into the chaos of my references, and I felt lighter. The work was just starting though. Early versions of the manuscript were heavy with sadness and even guilt. Had I done right by Mom and Dad? Then there were a few angry versions while I processed feelings around the support that did not come. Finally, my versions revealed the truth of a melange of darkness and light. I knew I was almost there. Coming to the final versions, I could see the arc of the story and how my narrative had much in common with the journeys of other caregivers I was meeting. “Yes” my early readers said, “I see my story in yours.” I knew I was done.
My darkest day was when my brother, hearing me describe my progress in a voice I recognized as passionate, said “No one will want to read that.” One negative, a minute long conversation, was enough to snuff my zeal for months. Again, Judi came to my rescue. We talked through this block and realized that even a sibling quite disengaged from caregiving could control the narrative by quashing it. I began again, stronger now to criticism and aware of how denial would be a force to limit the interest in my book. Finally, four years later, the manuscript was launched on Mother’s Day 2017. From that point, a new phase began. I had been a caregiver, then an author, and now I was becoming an advocate for quality in care at the edge of life. I was on a new uncharted path.
What aspect of caring for your parents did you find most challenging?
It is important to say that I was not a solo caregiver, like so many others are. My twin Judi and I were a team from our shared promise on the first day of the new millennium to the final funeral on a freezing January Calgary afternoon a decade later. Together we breezed past challenges that lay other caregivers low.
Like isolation. We were never lonely long. Judi always had my shoulder to cry on, and I never doubted her wise advice. Like the lack of structure to our days. With parents still insisting they needed minimal help, we spoke about caregiving as a project and invited them onto the team. We talked about management by results. It gave them dignity and control, and we communicated pretty well about shared goals, even if fewer could be attained as the dwindling years wore on. Still, framing our work this way helped deal with ambiguity and the no knowing when the caregiving would end.
Like the growing number of messy and intimate medical tasks. We twins egged each other on and spotted each other till we learned the routines and avoided the pitfalls like medication errors. When we didn’t know we turned to Google and she never let us down as so often the health care system did.
Like the revolving door between Emergency departments, acute care and back to home when there were no other options. Hospital visits were a breeze, and we never admitted that sometimes having a parent admitted was a kind of respite. “Go to Emergency” was the most often offered advice we received from professionals through the uncertainties of the dwindling. But we were the ninja daughters making the transitions look easy, and I felt sorry when I observed other haggard caregivers, bereft and bewildered by the patchwork of it all.
We were ninjas again each time we faced down the bullies of the health care world, especially those who used vague rules to excuse poor performance. I know many caregivers find system navigation and negotiation to be the greatest challenge of all, but our mantra was “patient centred care” and “nothing about us, without us” and we took it to the top if we had to. People saw the tough as nails twins but we knew better. It was all an act. But we listened to our mother’s advice, “fake it till you make it,” and it worked surprisingly often to achieve better care.
But our challenges lay on the shadow side of what appeared as competence. We endured nagging emotional challenges. Both Judi and walked a line between being hero caregivers on the one side and the dysfunctional duo on the other. Depending who you asked. In good times and tough times for our parents we were often enmeshed in unhealthy ways. We tried to build boundaries but we knew they were a fiction when the going got tough.
It all came at a cost. Compassion fatigue was our clear and present danger. I saw one role as daughter at a distance as thumb in the dike against Judi’s dammed up frustration as daughter on deck. There was no solution other than Judi. Lines ups were so long for care that even the wait for assessment was months. Mom would have none of it anyway. “My home would be fine if only I had a bath lift,” Mom would say, and bingo…another wild goose chase job got added to the to do list. “Put your own mask on first” I would advise, knowing what Judi’s answer would be. “what mask?” It became our private gallows humour.
I believe these emotional challenges of caregiving are widely experienced though they are hardly ever admitted let alone addressed. And And there’s no quick fix. That’s why caregiver support groups are so helpful. They offer perspective. And just being able to speak of fears out loud and say “I’m sick to death of it all,” without feeling judged, is chicken soup for the caregiver soul.
What helped you when you were caring for your parents?
Respite is of key importance for caregivers. I had Judi’s back on that so that she could pull away from the front line while I took charge. We cherished the few times when our spouses stepped in, allowing Judi and I to get away together. It was win win. I believed our parents benefited from seeing different faces, and might have better appreciated what Judi and I were doing without fanfare. Better yet, our family could see what caregiving meant in new detail. No one ever offered to “stay on” once we returned. But we got respect as well as respite.
Were there unexpected rewards?
Everyone’s benefit package as caregiver is different, I think. But I was surprised by joy so often that I knew that being with Mom and Dad through their dwindling was cause for gratitude. A friend working in the hospice put it well. He called caring and being cared for a dance. Each had a role and faced challenges to learn the steps. Just as the caregiver needs courage and patience in the dance, being the vulnerable one, accepting care, sacrificing control, is challenge too. When everyone is in step, there are unexpected rewards. Learning how to be cared for is important for the caregiver. The dance is a dress rehearsal for our own dwindling time.
One other thing I know for sure. A dwindler is like an onion. That brittle skin, and those tough outer layers give no hint of the sweetness that lies inside. To get to it, you have to peel back the layers and let them go. If the caregiver stays dedicated to the role, that tenderness is experienced as a new version of love. At least that was my unexpected gift. It’s not to be missed!
If you were to give advice to a family caregiver, what would you tell them?
I think we all need to see the caregiving time as is part of the life cycle. We need to get used to its presence in our society and learn how everyone can flourish. Caregivers can help move this dial by asking for help. One in four of us at any point in time is a caregiver, a million British Columbians. Many more are recovering and moving on as wiser people to the needs around. The caregiver tribe is huge. So my advice is as simple as it is not easy. Take the caregiving as part of your life journey and embrace it, acknowledging the problems but cheering for what is being done well by the health care system.
But how can we do this? Caregiving is uncharted territory after all. I say no. Being a parent with little kids was scary and consuming and hard. But our focus was not on the troubles we were having. We took delight in what joy we found and learned all the ways to make lemonade. Alas, at the other end of the life span, there is less support, and there’s anticipatory grief, not anticipation of bright futures. Still, I am thinking that with a commitment to push for change while acknowledging what is going right, we might rediscover feelings like empathy and compassion for the vulnerable. Seeing the light coming through the cracks takes practice. But we do have models in our own experience that might help us not just survive caregiving, but thrive in it.
You have mentioned in interviews that writing was a way to cope when you were caring for your parents. Can you offer tips for caregivers wishing to use writing as a coping tool?
Don’t just wish to write. Do it!
I used little coil notebooks that fit into my purse and went with me everywhere, along that a pen that worked. My book was private. It was not a journal, not a diary but a place for my stray ideas and insight. I wrote out what was nagging at me too. I didn’t need spell check. I didn’t even expect sense in my jottings. I did expect them to add to my clarity though. Those notebooks delivered. When it was time to “really” write, there was this suitcase full of feelings. So my crutch living the caregiving journey became my inspiration as I wrote about it.
Is there anything else you’d like to add?
Here’s what I’ve learned on my caregiving journey.
Reading a good book can feel (almost) as good as a warm hug from someone you love. It can make you feel understood and comforted. It can give you ideas for how to tackle life’s challenges and empower you when you’re feeling down. A good book can make you laugh out loud and catch your tears.
For caregivers, reading a good book might be just what you need to help you wind down after a long day, or to fill some time while waiting for your loved one at doctor’s appointments. Not sure what to pick up? Read on for three suggestions.
THE DWINDLING: A DAUGHTER’S CAREGIVING JOURNEY TO THE EDGE OF LIFE, BY JANET DUNNETT | The Dwindling chronicles a ten-year caregiving journey of twin sisters Janet and Judi with their parents, Betty and Fred. This is a read filled with hope, laughter and bravery. PS – Stay tuned for an upcoming interview with Janet Dunnett on the blog!
BURNOUT: THE COST OF CARING, BY CHRISTINA MASLACH | If you are a caregiver, you are at risk of burnout. Even if you feel that you are coping well, this is a must-read for anyone caring for a loved one. This book is filled with tips, symptoms, and strategies for preventing and recovering from burnout.
CAREGIVING: THE SPIRITUAL JOURNEY OF LOVE, LOSS, AND RENEWAL, BY BETH WITROGEN MCLEOD |This book is helpful for anyone at the beginning of their caregiving journey, to get an overview of what they might expect and to learn tips for how to navigate the health care system and get support. For caregivers who have been on their journey for quite some time, this read can help with filling in the gaps they might be struggling with.
What books have helped you on your caregiving journey? We’d love to hear from you!
Cassandra Van Dyck
Here are some magazines on mindfulness available by subscription or on newsstands:
‘Mindful’ magazine:
-this is a U.S. magazine, good for resources such as books, websites, meditation retreats or information about certification programs
-great articles on psychological issues such as: stress, anxiety, loneliness or grief
-regular tips on how to meditate
-but–is U.S.-focused magazine, meditation retreats and mindfulness events are all located in U.S.
‘Mindfulness : The New Science of Health and Happiness’:
This magazine is put out by Time, it came out this year, is available until August at newsstands, others may follow
-great informative articles on basic mindfulness skills such as meditation, mindful eating, yoga, and how to set an intention
-great mindfulness digital resources such as a review of meditation apps you can download to your smartphone for a small fee
-overall, great mindfulness resource for those who are just starting out on their journey to mindfulness
These magazines, besides their obvious benefit in providing useful information, can also have a calming effect as the information and topics covered are mostly positive and soothing, so in a sense, just reading about mindfulness can be relaxing in itself, I used this on my last plane trip.
Happy reading!
Calm Pond
As we begin the new year, we’d like to say thank you to all the guest writers who contributed to our blog this year. These people are talented, local professionals, experts, and individuals who gave their time and knowledge to our caregiver community.
Thank you to:
We’d also like to thank our committed volunteer, Calm Pond, for the numerous posts she has contributed to our blog over the years. Her post, 9 Symptoms of Burnout, was our most viewed and liked post of the year!
Finally, a special thanks to you–our readers–for your comments, your feedback, and your dedication to our community in 2016
Lindsay
North Van Caregivers 