The Gentle Art of Saying No

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).

  1. In order to succeed at setting boundaries, you need to learn to say no.
  2. One of the author’s colleagues said that she imagines her fondest mentors and what they would counsel her to do.
  3. Another suggestion: Say : ‘Thanks so much, let me sleep on it and I’ll get back to you first thing tomorrow.’ I call this the ‘delay technique’, and it does buy you some time.
  4. Practice saying your noes, and have a few ready-made responses.
  5. Practice tuning into your gut feelings about the issue.

Of all the above techniques, my personal favourite is #3.

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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!

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Poetry to uplift your mind

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.

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“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

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“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

 

 

 

The Dwindling: An Interview With Janet Dunnett

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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.

3 Book Recommendations for Caregivers

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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

 

Review of Mindfulness Magazines

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

The North Van Caregivers Blog: A Year in Review

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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

 

Recommended Article: When MS Means Mighty Stubborn by Cheryl Ellis, Caregiver.com

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Karyn recommends the article, “When MS Means Mighty Stubborn” by Cheryl Ellis on Caregiver.com. If you have struggled with your loved-one’s desire to remain independent and your desire to maintain their health through preventive measures, this article will be of interest.

“Both caregiver and patient have heard the phrase ‘you are not MS’ repeatedly. An unfortunate truth is that while the individual is not the disease, the disease affects their body and often rights of choice,” writes Cheryl Ellis. “Caregivers have been given custody of their loved one’s trust in addition to handling various affairs, but the original relationship between the MS patient and the caregiver remains. Remembering that relationship and putting it first, both verbally and by action, can offer an independence for caregiver and loved one.”

While the article specifically addresses the relationship between someone who has MS and their caregiving loved-one, the article offers communication tips to negotiate the tasks that a carepartner and caregiver does.

What do you think? Let us know in the comment section.

Lindsay

Guest Post: Decision Making With More Ease by Cheryl Brewster of The Intuitive Life

As a caregiver, are you feeling weighed down with guilt, frustration or worry? How do you navigate change with more confidence? How can you make decisions with more ease?
The answer? More mindfulness.

 Mindfulness is the ability to notice what’s happening in your head so you can make better decisions. It frees you from past conditioning, fuzzy thinking, overwhelm and unconscious patterns that keep you in fatigue rather than energy with clarity.
Mindfulness is a hugely important ability to foster and has gained massive respect around the world and particularly, in business.  Over 22% of major business organizations in the US include some sort of mindfulness training in their human resource offerings to staff. It reduces stress, promotes clear thinking and focus, and improves health and well-being.  As a caregiver making critical decisions for your loved one, mindfulness is no longer an option… it’s a necessity.

Here’s a quick outline of how Mindfulness can help with the decision making process: Aware, Breathe, Connect.
1. Aware – Be the observer.
What’s happening to you as you consider the decision you need to make?
Watch yourself.
What are you thinking, feeling, sensing?
Notice your body sensations.

Developing the habit of observing yourself can pop you out of the unconscious knee-jerk reactions that occur, especially when you feel worried about someone in your care.

2. Breathe for “one mindful minute”
It sounds too good to be true, but one “mindful minute” can save the day, let alone your sanity. Once you’ve established yourself in observer mode, stay there for one minute… don’t try to figure anything out…just be present in watching yourself. Allow the mind to settle into the breath, not carried away by thoughts, sensations or emotions, just focused on even, regular breaths. Breathing for just one minute helps you find your centre again.  From here, knee-jerk reactions or emotions can be identified and set aside. Mindful breathing unhooks you from the flight/fright/freeze that is the natural consequence when feeling uncertain or threatened.

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3. Connect – by asking yourself what is the next right thing?
The clarity you will receive from this very short process is astounding. It creates a laser-like beacon for you to follow. You can only ever do one thing at a time so mindfulness reminds you of the choice and power you have to do that one right thing.

This does take courage. Why? Because this process promotes change. And sometimes (or should I say often), we don’t want to change! But when change has the capacity to instantly take us out of worry, frustration, fear or guilt and back to peace and confidence, then we need to ask ourselves…

What price am I willing to pay to return to peace?
Often times, most times, it’s simply the decision to let go of things needing to be so painful or so hard. As caregivers, overwhelm can become a habit so we must remain diligent in letting things be easier.
If you’d like to learn more about Mindfulness to create more ease in the decision making process, then be sure to attend the workshop on October 26, 2016 with Cheryl Brewster of The Intuitive Life, to inspire and guide you into decision making with more ease.

 

Caregiving in the U.S: Millennials

photo-1429080542360-e39b1a6c57c2.jpgI am following up on a previous post on caregiving in other countries:

In the U.S, 10 million members of the millennial generation (ages 18 to 34) are caring for adult family members. 25% of U.S caregivers fall into that range, according to the AARP (American Association of Retired Persons) Bulletin.   These young people often don’t have much experience with serious illness. Some are long-distance caregivers with new careers, feeling guilty when they can’t visit family members.

Many support groups available to caregivers aren’t focused on this age range.

Caregiver Hannah Roberts, 28, cares for her mother who is diagnosed with pancreatic cancer.  She’s taken a year’s leave from medical school, and moved into her parent’s home in a Boston suburb.  She drives her mother to medical appointments.

Many young caregivers feel that caregiving is “a way of giving back for them bringing you into this world.”

This completes my focus on Caregiving in the U.S.

Calm Pond

Online Caregiver Support Groups & Forums

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Time, location, and overwhelming responsibility can all be cause for missing out on caregiver supports. If you struggle to make our regular Network Meetings or Walk & Talk sessions, you may be feeling the need for support but unsure of how to access it.

Here is a list of 7 online support groups and forums for caregivers: 

  1. I Care for Someone: CanadianVirtualHospice.ca offers several discussion forums, including one for caregivers and one on grief. Each forum is easily accessible and recent comments show a response time of several days and more.
  2. Alzheimer Society of Alberta and Northwest Territories: This online gathering place offers a place for caregivers of people with Alzheimer`s Disease to connect.
  3. COPD International: If you are caring for someone with COPD, the online community includes a chat room and a message board to share your experiences of caregiving.
  4. Cancer Chat: The De Souza Institute offers online support groups for caregivers of people with any cancer diagnosis or prognosis at set times and dates for those who can schedule the time but have trouble getting away. (The next session begins on October 6th, 2016.)
  5. Caregiver Support Group: This online forum for support groups has an extensive member list and a response time of a few days.
  6. Caregiver-Online Support Group: An unmoderated email group for caregivers from the Family Caregiver Alliance (US). Share your stresses, concerns, and feelings about caregiving with others by sending and receiving email.
  7. LGBTQ Community Support Group: Also hosted by the Family Caregiver Alliance, this unmoderated support group offers a place for lesbian, gay, bisexual, and transgender caregivers of adults with chronic health problems to discuss the unique issues of caring for their loved ones over email.

Did I miss any that you use? Please share it with us in a comment.

Lindsay