Tuesday, 21 January 2020

The Passionate Ordinary

I feel so lucky to be part of a small group of writers in my town. We are all women. Most of us are mothers and caregivers. Whenever it pleases us, we convene in someone's living room with coffee and someone's gift of muffins or cookies. Recently, our chosen topic for conversation and writing was Al Etmanski's idea of "Passionate Ordinaries." Al implores us to nurture a "'resurrection of the ordinary' and end our reliance on the superhero/saviour model of social change." It is more than good enough to live in the moment, passionately, nurturing the ordinary. 

Here is my friend and fellow writer Jae Shaw's beautiful poem on this theme. 



This Ordinary

A raven's call rattles from a treetop outside my window, drawing my attention up, away from my busy-work. With its black beak open and wings akimbo, it seems to be speaking directly to me, calling me back to this moment. After all, what is there to strive for? More stuff? Beyond the basics there's nothing I need. More recognition? There's nothing to notice here for as soon as it's noted it's gone. More love? Love can't be measured and there's nothing to earn that's not already mine. 

The raven launches itself into the blue sky causing the branch it was perched on to wave up and down for a time. And what could be more precious than the ordinary, this ordinary? The flap of wings overhead. The slow expansion and reaching of a tree trunk. The beat of this heart keeping time with all other hearts. A single breath shared by all others breathing. 

Jae Shaw


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Monday, 13 January 2020

I'M DREAMING OF......A RETREAT

I am very excited and proud to be a co-creator (with Dr. Aaron Blight, Dr. Zachary White and Amanda La Rose, LCSW) of the new Caregiver Transformation Retreat. Read on to learn what retreats mean to me. 
All of us have been transformed by caregiving. Now we have an opportunity to go deeper, to share our hard-earned wisdom and to map out a new way of practical caring without desperation or burnout. And the best way to achieve this new perspective is face to face, together with others who understand – in The Caregiver Transformation Retreat.
My life of caregiving began in 1988 when our son Nicholas was born with severe cerebral palsy. During the first years of his life, Nick was often ill and in pain. They were sleepless years, infused with desperate worry. Of course, all this happened before the internet became a lifeline for caregiver support. What we did have though, were parent retreats, sponsored by our local Easter Seal Society.
Those parent retreats were my annual opportunity to learn about new therapies, strategize about the sibling experience and compare notes about ways and means of keeping my marriage intact. But perhaps the best thing about the retreats was the bonding with other parents. Here suddenly, were others who understood. And there were older, wiser parents who took on a natural mentoring role. There was a palpable sense of safety and soothing in those retreats. We all felt it.
holding mom's handFast forward to 2016. My sister Karen and I found ourselves in the thick of caring for our mom, a loving but wilful 94 year old with dementia. Mom was in denial about her needs and living independently with insufficient support. “Muddling through” was a good descriptor for how we were doing. When we could, my sister and I retreated to our family cabin by the lake. On forest walks, we wondered what might happen if Mom broke one more rule. We laughed at the outrageous imaginings of telling Mom what we really thought about her bad behavior. At the end of the weekend, we went back to being good daughters, diffusing crises and brokering deals to ensure Mom’s stability for another week or month.
Looking back on the caregiving retreats in my life, I feel deeply grateful. I appreciate the cyber friendships of other caregivers, but the face-to-face retreats have been something very special to me. They were energizing, hopeful, knowledge-filled and inspiring. In short, they were transformational.
Now, together with Aaron Blight, Zachary White and Amanda LaRose, I am honored and excited to be a co-creator of the new Caregiver Transformation Retreat. Our team has come together with a clear vision of what is helpful to caregivers, wherever they are in their journey of caring. Our retreat is tailored to every group we serve, whether participants are medical professionals or family caregivers. Resilience, personal transformation and a changed perspective on the well of human kindness are the by-products of our retreats. Participants will leave energized, with a new sense of purpose and fulfilment in their caring roles – outcomes only achievable in the magical moments of face to face retreats.

Friday, 10 January 2020

AGAINST ALL ODDS - Blending Research and Disability Parenting


It is my pleasure to host this guest post today from Queen's University doctoral candidate, Lorraine Hutton. I was amazed by Lorraine's story of perseverance and her research question about how we as parents of adult children with disabilities use social media for support. This is an international study, so all are welcome! Thank you, Lorraine, and good luck with your fascinating project! - Donna

Like all parent-caregivers, I never imagined that my life journey would entail the long-term provision of care to a disabled child.
I grew up in New Zealand and at 21 years of age, I married an American. Our second child was born after a lengthy labor and although I felt my son seemed to be developmentally “challenged”, Doctors insisted he was “normal”. With (possibly) a mother’s intuition, I worked through the initial grief process alone ---without a diagnosis. Making sense of an entirely different medical and educational system was difficult and my New Zealand family so far away. We lived in a small California town in USA and finding a suitable school placement for my son when he was about to turn five was nigh impossible. School evaluations were unpleasant, and one professional’s comment cruelly retorted that; “he sweats!”. I decided to home school my son and his three siblings. My main goal was to teach him to read because I felt that if nothing else, he could entertain himself with books and he would be able to read important labels and signs. He is now 28 years of age and reads very well, however, math is an alien concept.
I divorced in 2008, returned to school and went through some tough times with unsympathetic professors and young classmates, not to mention, the difficulty of taking my son to school with me. He would sit outside my lecture hall and I would check on him frequently. So many times, I longed for someone to understand my struggle---my mental and financial stress.
In 2016 I completed a master’s degree in Adult Education at Portland State University (Oregon, USA) and in 2017, I transferred to Queens University at Kingston, Ontario, Canada. Having endured the experience of lonely caregiving, I felt compelled to try to understand how long-term caregivers like myself, find “support” in their day to day challenges. Many caregivers I speak with have shared their experience and it is identical to mine. They feel misunderstood, rejected, blamed and alone. While there are limited programs and activities being created for disabled persons, there are virtually no “support” services for the parents who provide long-term, day to day care to disabled adults. With few options, some parents are turning to the internet---specifically Facebook to find understanding and information, but my question is, “do they really find meaningful connections there? What kind of value do caregivers visiting Facebook (FB) get from their participation in FB groups? Who uses FB, and why do caregivers not use FB for social and supportive connections? My PhD in Health Geography with an emphasis on caregivers has become the thing that consumes most of my thoughts and actions. If what I learn in this endeavour sheds light on new ways to provide support that encourages resilience in caregivers, I will feel that I have achieved a small measure of success ---finally.
Lorraine invites caregiving parents of intellectually disabled adults (over the age of 18 years) to participate in a short, anonymous online SURVEY. Please click the following link and please accept her thanks in advance.
https://queensu.qualtrics.com/jfe/form/SV_6o1iMDAhLuLRSdf

 


Friday, 3 January 2020

My Wish For You: To Continue

A good friend shared with me these words from the late wonderful and wise poet, Maya Angelou. They are so appropriate for the beginning of a new year and new decade. 

Continue by Maya Angelou
 
My wish for you is that you continue...
Continue to be who and how you are, to astonish a mean world with your acts of kindness...
Continue to allow humour to lighten the burden of your tender heart...
Continue in a society dark with cruelty to let the people hear the grandeur of god in the peals of your laughter...Continue to let your eloquence elevate the people to heights they had only imagined...
Continue to remember your own young years and look with favour upon the lost and the least and the lonely...
Continue to put the mantel of your protection around the bodies of the young and defenseless...
Continue to take the hand of of the despised and diseased and walk proudly with them in the high street...
Continue to plant a public kiss of concern on the cheek of the sick and the aged and inform and count that as a natural action to be expected...
Continue to let gratitude be the pillow upon which you kneel to pray your nightly prayer and let faith be the bridge you build to overcome evil and to welcome good...
Continue to ignore no vision which comes to enlarge your range and increase your spirit...
Continue to dare to love deeply and risk everything for the good thing...
Continue to float happily in the sea of infinite substance which set aside riches for you before you had a name...
Continue - and by doing so you and your work will be able to continue eternally.

Friday, 20 December 2019

WHAT THIS CAREGIVER REALLY THINKS


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It is always my privilege to host the writing of Diane Stonecipher. 

Here, Diane reflects on the social, moral and political implications

of her experience caring for her son. Diane and her family live in 

Texas.

Image result for i am invisible

For as much attention as caregiving is finally getting, it can still be a very invisible place. One of my co-workers mentioned that they really wish they had my schedule, i.e. a part-time job. I have to breathe deeply when someone says this and decide how much I care to share. To “let it go” or remind someone that things are never as they appear.
My full-time job is being a primary caregiver for a 28 year old son who has been profoundly brain-injured since birth. He is blind, quadriplegic, non-verbal and developmentally approximately 6 months of age. I work part-time, not because I want to, but because I cannot leave my home unless someone else is there. They need to be present and able to carry out his care. My husband and I raised him and his 2 younger brothers, who have since begun their lives as adult young men. I am now a 63 year old woman taking care of essentially, an infant.
Much as I would like to be working in my field, this has been quite difficult to do since his birth. My husband has had difficulty as well. We have been intermittently employed, unemployed, insured and uninsured; currently employed part-time and uninsured. This then limits career growth, retirement savings and dramatically increases day to day stress. Always one event away from collapse of the duct-taped “success”. Things are not what they seem.
Caregivers have many things in common, yet all circumstances are different. Some are caregiving from afar, some are overseeing care, some care for loved ones in their homes, some have total responsibility and some share that responsibility with other family members and trusted professional caregivers. Some have had good relationships with the people they are caring for, others have had fractious ones. Some are grieving the loss of what their loved one was and others are grieving what was taken from the start. Some people care for those with sweet dispositions and others are less fortunate.
Anyone who is caregiving will tell you that it is tiring, isolating and often stressful. I know no one who becomes a caregiver who thinks it is easier than they thought it might be. For some people the time frame is relatively short or they can at least see when it will likely end. Others, myself included, are in a time warp that affects just about every aspect of life.
There are many aspects of caregiving that are very enriching. An appreciation for what is. A tenderness for vulnerability that extends to all. The forced slower pace allows some things to be noticed that may have not been so otherwise. You are living from your heart in most moments. I am fortunate, in that my son is not combative or uncooperative. He is a beautiful person who has absolutely no capacity to harm. He trusts implicitly and has patience beyond words.
Fatigue is, however, a beast. One that robs us of our health, our desires and sometimes, our sanity. Parents of infants feel this, all the while knowing their baby will, albeit it not soon enough, begin to emerge from complete dependence. For many caregivers, this is not to be. It can be very difficult to keep going physically, emotionally and sustainably.
It is time we looked at how to help caregivers with more intention and practicality. Why are we punishing people who can’t work enough hours for insurance? We are we making this untenable situation more so by having them carry that burden themselves? How can we expect caregivers to really take care of themselves if they cannot afford adequate health insurance? What good does FMLA do, if you can’t hold down a job? How can we expect caregivers to get the help they need if they can’t afford to pay outside caregivers to assist them? If we are to care for each other, we must have the tools to make it possible.
This is what we need to be asking of our elected officials. We come in to this world vulnerable and we leave it the same way. We must begin to treat people who are fragile, no fault of their own, with kindness and respect. It could just as well be ourselves and it likely will be at some point.
Full-time caregivers should not have to “afford” insurance because they are not insured at work or their premiums should at the very least be “deductible”. Full-time caregivers should be compensated in some way because they often cannot contribute to their social security. Turning caregiving over to the corporate world has made affording it out of reach for many. We are in essence penalizing caregivers for doing what they do.
We must also galvanize, as a country. and create a care corp of sorts that would provide training, better wages and benefits and a career for those dedicated to caring for others. Not a volunteer system, but an infrastructure for a care model. This will help family caregivers and those navigating their own care. This will create jobs and facilitate a family caregiver’s ability to work outside of the home. This is an economic and impact-oriented solution. It is also a way to cultivate our kinder, compassionate natures.
Lastly, if you know anyone this holiday season, caring for themselves or caring for a loved one, let them know that you see them.