The Sculptor’s Attitude

This poem hangs over my desk at work, and every now and then I read it when I need some motivation. It was left for my coworker from a caregiver that participates in our programs with the note, “Hope this can help and encourage. Works for me.” I hope it works for you, too, dear caregiver.

I woke up early today, excited over all I get to do before the clock strikes midnight. I have responsibilities to fulfil today. I am important. My job is to choose what kind of day I am going to have.

Today I can complain because the weather is rainy or…I can be thankful that the grass is getting watered for free.

Today I can feel sad that I don’t have more money or…I can be glad that my finances encourage me to plan my purchases wisely and guide me away from waste.

Today I can grumble about my health or…I can rejoice that I am alive.

Today I can lament over all that my parents didn’t give me when I was growing up or…I can feel grateful that they allowed me to be born.

Today I can cry because roses have thorns or…I can celebrate that thorns have roses.

Today I can mourn my lack of friends or…I can excitedly embark upon a quest to discover new relationships.

Today I can whine because I have to go to work or…I can shout for joy because I have a job to do.

Today I can complain because I have to go to school or…I can eagerly open my mind and fill it with rich new tidbits of knowledge.

Today I can murmur dejectedly because I have to do housework or…I can feel honoured because the Lord has provided shelter for my mind, body, and soul.

Today stretches ahead of me, waiting to be shaped. And here I am, the sculptor who gets to do the shaping.

What today will be like is up to me. I get to choose what kind of day I will have!

Have a GREAT DAY…unless you have other plans.

Advertisements

A Week in the Life of a Caregiver: Spring

Last week, my hairdresser, when I mentioned I was a caregiver, said: “And who will take care of you?” Indeed, that’s a good question.

In answer to this question, I went online and read an article entitled: ‘Quebec asking caregivers on how to help them help others.’ (CTV Montreal, Tuesday December 11, 2018)

In the article, they discussed some of the issues today’s caregivers routinely face, such as: burnout issues, lack of appreciation, financial problems and stress (in some cases, leading to nervous collapse, as one caregiver shared.)

Marguerite Blais, Quebec’s Minister for Seniors, (herself once a caregiver for her husband), thinks that  caregivers need support both from the community and from government. She proposed public hearings, and a possible action step of medical plans for caregivers.

As promised, I will share notes from the book I mentioned in my last post: ‘Rage Becomes Her: The Power of Women’s Anger’ by Soraya Chemaly (2018).

  1. In the U.S., 54% of lower income women spend more than 20 hours a week of unpaid care work for families (p. 72). Depressive symptoms have been described by sociologists as ‘the cost of caring’ for women.
  2. Further, women taking care of parents were twice as likely to develop anxiety and depression (p.88), while women caring for disabled spouses are six times as likely, as women who didn’t shoulder similar responsibilities.
  3. Canadian Stats Canada says 8 million Canadians provide care to loved ones, most are women between the ages of 45-64. (2012)

Last Week:

Finished recording Talking Album (Create-A-Memory) for Dad’s birthday. Even a sibling living in Ontario contributed via WhatsApp (which is bringing us closer together, bridging the distance between East and West.)

Friday:

At times I feel like I’m running a Michelin 3-Star luxury hotel! I made my parents Cream of Asparagus soup from scratch. I’ve been serving a lot of homemade soups lately, as my parents taste seems to run for lighter fare these days.

Saturday:

Siblings stepping up to the plate to offer help and support. Huge relief. I’ve been feeling like a one-woman show lately, or like one of those Chinese acrobats that spin plates. The trick is to keep multiple plates spinning in unison and not letting any one plate fall to the ground. It’s an art (as well as a science.)

Also, sometimes my siblings don’t want to hear the Truth (as I see it). I try to stay positive above all and keep the lines of communication open and flowing. You have to be a bit of a diplomat, I find.

By Calm Pond

Happy Valentine’s Day

At age 12, my mother found herself sick in bed. While resting, she created a beautiful embroidery, on which was written the following:

‘If all mankind would live in mutual love,

The world would resemble that above.’

May you live in peace and mutual love this Valentine’s,

Calm Pond

3rd Annual Caregiver Expo

2018 Caregiver Expo-page-001

If you’ve been on the fence about visiting the 3rd Annual Caregiver Expo this Saturday, we hope that this post will sway you to pop by – if only for a little while! Expect to be greeted with warm smiles and a lively atmosphere. Booths from local services and resources will be set up so you can explore at your leisure. Presentations will run throughout the day. Come by to catch your favourite speaker talk, or stay for the long haul! Join us to connect, learn, and to celebrate the incredible role you play in a loved one’s life. 

Presentation Schedule

9:15- 9:30AM
Laughter Yoga
John Wallstrom

Laughter Yoga involves guided exercises that are lighthearted and easy to follow. Laughter strengthens the immune system, releases feel-good endorphins and lowers blood pressure. Come and have a laugh with us!

9:30 -10:00AM
Family communication and the power of boundaries
Jodie MacDonald

With a focus on somatic awareness and breathwork, this talk will help caregivers navigate the complexities of family dynamics and sibling relationships, learning to separate their own needs from the needs of others, through boundary practice and insight into habitual patterns of relating.

10:15- 10:45
The Rollercoaster of Grief
Robin Rivers

Grieving the loss of a loved one or anticipating the loss can be challenging, no matter how long you have been in a caring role. Learn about ideas to help you on your grief journey and resources that are available in the community.

11:00- 11:30
Re-filling your Cup: Preventing Caregiver Burnout
Karyn Davies

Join us in learning to recognize what activities give you energy, and which ones drain your mental, emotional and physical energy reserves.  Become aware of the major signs of burnout, while considering how you can re-fill your own reservoirs of hope and strength.

11:45- 12:35 (50 minute keynote)
Energy to Care: the science of how to balance self-care with giving
Dr. Maia Love

How do you care for yourself as you help a loved one through a health crisis? Learn key tools and skills to support your own health and wellness as you care for others; understand the wellness science to lift your energy and recharge your mind.

1:00- 1:30PM

  1. 1. Inspiring your best quality of life: The Everyday Counts Program
    Jane Jordan (15 minutes)

Learn about the Every Day Counts Program, a free support program for individuals living with a life-limiting illness. The program offers access to services and supports that are designed to enhance quality of life and are available whenever individuals feel they need them.

  1. All Ready to Go
    Stephen Garrett (15 minutes)

Learn about accessible and affordable options for pre-planning a loved one’s funeral arrangements. Having a plan can greatly reduce stress for family members during a time of loss.

1:45- 2:15
Qi Gong to boost your energy
Caroline MacGillvray

Together we’ll practice some accessible, fun Qi Gong exercises. Qi Gong is designed to help you let go of stress and tension, energize your body and mind, and create feelings of peace.

2:30- 3:00
The importance of having a Power of Attorney and Representation Agreement
Jackie Morris

This presentation will focus on two important legal documents, a Power of Attorney and a Representation Agreement, what they do and the pros and cons of alternatives.

Creative Expression for People Living with Dementia: The Society for the Arts in Dementia Care

fa8-by-john

“Where rational language and factual memory have failed people with dementia, the arts offer an avenue for communication and connection with caregivers, loved ones, and the greater world.” – Anne Basting

In January of 2012, Janet Bolton was awarded the Winston Churchill Fellowship to investigate “dementia and the use of creative arts to maintain personhood. “Personhood is described as ‘a standing or status that is bestowed on one human being, by another in the context of relationship or social being.’ It is unique and almost sacred essence of the person; it is maintained, grown and restored when we treat each other with deep respect. The person living with dementia is seen to have 6 core psychological needs, the central need being to love/or be loved,” writes Bolton. The researcher’s work took her to care facilities in Australia, New Zealand and Canada to watch how different people and organizations were using creative art to support people living with dementia. Bolton saw patients use different methods to engage creatively, such as painting, laughter, and analyzing works of art. She notes the importance of this kind of engagement, and believes it can indeed support those living with dementia to maintain personhood.

The Society for the Arts in Dementia Care provides a program similar to those Bolton witnessed on her travels. “The Society for the Arts in Dementia Care is built on the premise that older adults and people living with dementia have the right to dignity, to be heard and to be valued. The Society provides an interdisciplinary forum for creative expression with older adults by bringing together academic research and practical knowledge. The Society aims to disseminate knowledge and establish links with organizations with similar values worldwide, thereby improving the quality of life of older adults, especially those living with dementia.” The organisation acts as a resource for people who support loved ones with dementia, in hopes they will provide them with access to the creative arts. The Society offers workshops and conferences to provide education, networking and collaboration.

If you wish to start providing your loved one with the tools to use artistic expression at home, take a look at Creating Art as Therapy for Alzheimer’s.

Have you accessed any art programs for your loved one living with dementia, or experienced positive effects of creative expression? We’d love to hear from you in our comments! 

 

Cassandra Van Dyck

 

Finding playfulness

“Today, make time to play.”  ― Na’ama Yehuda

pexels-photo-89860

When your husband or wife has an ongoing health condition like Parkinsons or memory loss, they likely need your help every day with practical things as well as emotional support. In this role you’re faced with a fair bit of responsibility, and the realities of a loved one’s illness can be emotionally taxing. Because of the constant demands on your time and energy, it’s vital that you find ways to keep yourself healthy. Your methods can be creative!  At first glance, being playful might seem trivial in the face of a stressful situation- yet the benefits of laughter and lightness are many. Seeing the lighter side of life doesn’t mean you’re ignoring the difficult reality you’re in- it simply allows you to be human, and to decompress a bit of tension.  I invite you to experience how playfulness can relieve stress, boost your mood, AND increase your energy levels!

Here is your playfulness homework: 

Make a movie date with a good friend, and dress up in clothes from the movie’s theme. You might be a 1920’s flapper in a gorgeous hat, or a baseball player with a catcher’s mitt! Have fun with it, and laugh the night away, either at the movie theater or your own house.

Eat dessert with a child, and savor every bite. Let yourself get messy, and enjoy being fully in the moment. I suggest starting with ice cream!

ice cream

Wear a colourful scarf, pair of pants, or shoes. Enjoy feeling bright and cheery, and the compliments and smiles you’re likely to get from others. You could even respond to compliments by saying, “I feel like a million bucks!”

When your loved one is having a grumpy day, say humorous lines to yourself  in the next room or while driving, to help you let go of any frustration build-up. A few examples to start with:  “Too fab for that negativity”; “Stop global whining”; “Bad vibes, move along!”.
Find a harmless phrase that makes you smile.

-Karyn

The Dwindling: An Interview With Janet Dunnett

web1_170502-PQN-M-DwindlingAuthor-ak-170426 (1)

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 youd like to add?

Here’s what I’ve learned on my caregiving journey.

  1. Caregivers are experts whether they acknowledge it or not.
  2. Caregivers have a unique part to play in the circle of care. They are the ones who are 24/7 and never reassigned. They see the trends over time. They know what normal looks like. They have the voice and can take the perspective that the cared-for might have lost. They are the love glue that binds care plans without soul to the return to or preservation of well being that is everyone’s goal.
  3. Yet caregivers do not get recognition, respect or support beyond the barest manipulative minimum.
  4. Caregivers are invisible. They even find it hard sometimes to identify themselves as caregivers. Sadly, invisible things don’t get recognized, respected and supported.
  5. The culture around caregiving at the edge of life needs to change. That begins with the avalanche of stories to build awareness and point to the opportunities and holes.
  6. Tell your story.