Thursday, 11 February 2016

A Unique Canadian Story of Care, Innovation and Refugees


Melissa Campbell, founder of The Refugee Response Group, is a young Edmonton mother with a compassionate heart.  When she heard about the plight of Syrian refugees, she wanted to help ensure that any family seeking refuge in her community could enjoy the same comfort and safety that we sometimes take for granted here at home.  Melissa shared her desire to help with two friends, sisters Kathryn Rambow and Elizabeth Nash.  Kathryn and Elizabeth grew up in a family that supported refugees from Vietnam, so with Melissa’s help, they began to build a group strong enough to support a large, extended family from war-torn Aleppo.  Melissa’s core group is twenty-strong, but dozens more help with fund raising and coordinating donations of furniture and clothing. 

The old Souk in Aleppo, before the war, and after.

Melissa’s group was matched with two connected families.  The parents who head the household have a total of seven children.  Their oldest son is married with two children, including a newborn – a brand new baby boy, Ahmed.  The entire family escaped from Aleppo to a camp in Lebanon.  But their plans to travel in time for the baby’s arrival in Canada were scuppered when bad weather delayed flights and the baby’s arrival date became too imminent for safe travel.  Baby Ahmed was born a few weeks ago in Lebanon and now, Melissa’s Edmonton team is ready to welcome their Syrian family into an apartment that includes a crib and clothes for the baby.  All being well, Ahmed and his parents will touch down in Edmonton this weekend.

What makes Melissa Campbell’s story of refugee sponsorship unique is that she is using a Canadian social network called Tyze to plan and coordinate the efforts of her group.  Tyze is a secure online platform designed to help coordinate a network of support or care, including the creation of ‘communities of belonging’. Tyze is powered by Saint Elizabeth Health Care, Canada’s largest social enterprise.  This is a story of how Canadian ingenuity and generosity are helping some of the world’s most vulnerable victims of war settle in to our neighbourhoods.

Melissa’s Edmonton support group includes contributors who bring a wide variety of relevant skills and experience; one is a social worker and another works at the local school board.  Everyone has special talents that will help to ease the new family’s settlement process. The Edmonton response to the need for hands-on support, says Melissa, has been ‘magical’.  But coordinating efforts and ensuring that ‘the left hand knows what the right is doing’ has special challenges, especially given that files related to the family’s needs are private and shared on a need-to-know basis.  

Here are some features of Tyze that make it uniquely suited to a refugee support network.  


Tyze includes:

  • The same data security as online banking. It is completely private, password encoded and not Google searchable
  • A sharewall to post updates (videos and pictures) and exchange supportive messages among all network members. The wall is a place to help keep everyone informed, reducing the social isolation associated with this level of change that refugees will face.
  • A calendar of events that offers the network owner and members an avenue to be more informed about upcoming events, appointments and it helps others within the network plan when activities can have the greatest impact. As well, at the site level, the calendar can be used to schedule and inform network participants of local events.
  • Secure vault (file storage) to store important individual documents that can be shared with selected network members and/or share and store information that may be of benefit to the groups within that community.
  • A place for requesting assistance, giving members of the support network the opportunity to know when their assistance is most needed. This promotes the model of “Shared Care.”
  • A private and secure message system.
  • Resources and tools available in the library for network owners and all network members to increase their knowledge. This library can be categorized for ease of access and customized to each type of network. Common resources can be shared amongst different Tyze sites in the case of agency involvement with multiple support networks.


Melissa is thrilled about the way her community has come together to create a circle of support for refugees.  “It’s crazy how people have rallied around this family”, she says, “and Tyze is the perfect platform for supporting refugee groups.”

If you know of a refugee support group that could benefit from using Tyze, contact Mary Lou Ackerman Vice President, Saint Elizabeth HealthCare (905) 968 6451 mackerman@saintelizabeth.com for more information.




Saturday, 6 February 2016

HOME: The Making of a Sanctuary

Guest Post by Vickie Cammack (Originally published in Safe and Secure: Six Steps to Creating a Good Life for People with Disabilities by Al Etmanski)



For one glorious summer in the '70's, an old tamarisk tree with wide sweeping branches down to the sand of a Greek beach was my home.  Its branches opened like welcoming arms to form my front door.  When friends came to call, they knew I was home if they saw my sandals carefully set to one side.  Inside there was a special crook in one branch that held my cup and toothbrush and plenty of twigs to drape my scarves on.  My tree gentled the sun's rays by day and let the stars peek through at night.  I felt safe and sheltered by this kind tree.  My tree space felt lived in, by me, by others before me and of course by various wildlife who shared it with me.  It was definitely the place that felt the most like home during that sun-kissed summer.

One of our treasured family stories is the account of my mother, who upon reading a letter containing my starry eyed account of my life in Greece, burst into tears and wailed, "She's living in a tree!  A tree!" For her, my breezy home was not and never would be a home.

That's the thing about a home.  It is a very personal feeling. Not so much a place as a space. It is a space that breathes and nourishes us. A space becomes a home when it opens to us as we are, and when we in turn, get worn into it.  Creating this kind of home space when a person is vulnerable or isolated is complex. As families, we are often caught in the paradoxical challenge of finding spaces that both open doors and secure locks.  This is why cultivating and consulting caring connections beyond us is so important for our loved ones.  Standing together, we can peek out, open the curtains of our own comfort zones and imagine the living, breaking spaces our loved ones can grow their way into.  And out of.

Just as no tree lives forever, no home, no matter how well planned, financed and built, is ever permanent.  True durability lies in the long arms of others who will care for our relatives beyond our lifetime.  It is an embrace that will nourish and honour the spirit of our loved ones wherever they may live.

Note from Donna: Vickie Cammack is my friend and colleague in caregiving whom I hold in very high esteem.  Vickie is a recipient of the Order of Canada for her pioneering work in developing models of personal support networks for vulnerable people at risk of social isolation, including the creation of Tyze Personal Networks.  Currently, Vickie and I are co-writing a book about caregiving.  We don't have a title yet, but we guarantee that it will be interesting. 


Monday, 1 February 2016

TREATING OURSELVES AS WE WOULD TREAT OTHERS

This is a sponsored post written by me on behalf of Elizz for IZEA. All opinions are 100% mine.

Recently, I was chatting with friends about why caregivers have so much trouble asking for help.  “Maybe it’s because asking for help sometimes feels like a betrayal of the person we love who needs care,” I suggested.  “I ask myself if I am behaving like a dutiful daughter.  So if I ask for help, I’m not being dutiful and I feel guilty”, my friend nodded thoughtfully. 

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Picking apart our complicated feelings about love and obligation is essential in making peace with our emotions about caregiving. And to do that, we must be truthful and compassionate … to ourselves.  A good place to begin self-understanding is by completing the 5 Stages of Caregiving Quiz on the Elizz website.  I completed the quiz myself and scored INTENSIVE:  Often the longest caregiving stage, with complex and increasing care needs.  Individual self-identifies as a caregiver.  Without support, caregiver may be unprepared and experience unchartered emotions, family conflict and greater impacts on home/work life with risk of burnout and health issues.  With support, caregiver may develop a sense of competence, strength.

I am relieved to say that after twenty-seven years of caregiving, I do experience a sense of competence and strength.  Over the years, I’ve realized that a key to being at peace with myself has been in the way that I think about my caregiving role.  A few years ago, I began to understand that my loved ones had dependency needs that were separate from their personalities.  For me, this was a watershed moment.  My mother could still be my mother if a personal support worker helped her most days with shopping and meal preparation.  My son will always want me if he is ill or in pain, but now that he’s grown up, he wants another man to help him shower and change.

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Part of the reason that I experience a sense of competence and strength is because I feel good about asking for help – from family members, friends and paid support workers.  Within those circles of support, we all care for my loved ones, but we care for each other and for ourselves, too.

There are lots of quizzes and resources on the Elizz site such as the Styles of Caregiving Quiz. Browse to reflect on your personal caregiving stage and how you feel about your role.  There are many services available to assist families, but only you will know which Elizz caregiver services are right for you. Which Elizz caregiver services are right for you?

Visit Sponsors Site

Sunday, 24 January 2016

STILL ALICE, Strong Portrayal of Dignity in Early Onset Alzheimer's

by Guest Blogger Maria Theresa

Alzheimer's doesn't just change the lives of its sufferers, but the lives of their family and friends as well. Those who witness the decline of someone affected by the illness typically expend a great amount of time, money, emotional and physical energy caring for their loved ones. Still Alice (2014), a riveting movie about early-onset Alzheimer's, depicts the many aspects of living with the disease and caring for someone who has it.



In the film, Julianne Moore plays Dr. Alice Howland, a linguistics professor who starts to notice that something is wrong with her memory around her 50th birthday. After a positive diagnosis of early-onset Alzheimer's, Alice struggles to cope with her rapid decline, and her family -- husband Dr. John Howland, played by Alec Baldwin, and her three grown children -- struggle seeing the woman they once knew not only lose herself but her memory of them as well.



Films that cover the subject of Alzheimer's usually show the emotional and physical toll the disease takes on those who have it, but what is often kept off-screen are the heart-wrenching indignities that come along with being an Alzheimer's patient. There are several moments in Still Alice that leave the audience feeling uncomfortable, but these scenes do depict the truth of what actual Alzheimer's patients go through. In one such scene, Alice forgets where the bathroom in her own home is located, and accidentally wets herself. In another part of the movie, Alice visits her daughter, Anna, in the hospital after she has given birth to twins. While in awe over the babies, Alice doesn't recognize who Anna is. This is especially heartbreaking as Anna herself tested positive for the Alzheimer's gene, and the audience is well aware that she has a significant chance of suffering the same fate as her mother.
The choice made by directors Richard Glatzer and Wash Westmoreland to include the raw side of Alzheimer's that strips patients of their dignity was definitely bold. Through every step of her decline Alice strives to hang onto herself and remain, as the film's title states, "still Alice". Ultimately, she fails to hold onto the person she used to be, but for the movie to be in any way realistic this is how things needed to play out. All forms of Alzheimer's steal a patient's memories, personality, and former life. But not only are those living with the disease affected, it often drastically alters the lives of family members and caregivers as well.

Alice's husband, John, largely outsources his role as a caregiver due to his demanding career as a physician. In this respect, Alice is quite fortunate as many Alzheimer's patients don't have the financial wherewithal to afford excellent full-time care. Alice's eldest daughter, Anna, and her son, Tom, check-in with their mother as much as they can, but are unable to be day-to-day caregivers because of their own personal and professional commitments. This scenario is something that is much more common in the lives of Alzheimer's patients, who need increasing amounts of care as the disease progresses.

Alice is once again more fortunate than many actual Alzheimer's patients, as her youngest daughter, Lydia, is willing and able to temporarily put her acting career on hold and move across the country to care for her. This act of love combined with the work of her dedicated professional caregiver, and financial stability provided by her family's wealth, guarantee Alice the best possible palliative care that she can get.

These financial and familial advantages aside, the film sends an important message: no matter how much money or support one has, Alzheimer's inevitably takes the same toll on each and every person who has the disease. Still Alice (available on Xfinity and DTV) has been praised as an excellent portrayal of the disease by the Alzheimer’s community, and is an excellent film to watch by viewers directly involved Alzheimer's doesn't just change the lives of its sufferers, but the lives of their family and friends as well. Those who witness the decline of someone affected by the illness typically expend a great amount of time, money, emotional and physical energy caring for their loved ones. Still Alice (2014), a riveting movie about early-onset Alzheimer's, depicts the many aspects of living with the disease and caring for someone who has it.


In the film, Julianne Moore plays Dr. Alice Howland, a linguistics professor who starts to notice that something is wrong with her memory around her 50th birthday. After a positive diagnosis of early-onset Alzheimer's, Alice struggles to cope with her rapid decline, and her family -- husband Dr. John Howland, played by Alec Baldwin, and her three grown children -- struggle seeing the woman they once knew not only lose herself but her memory of them as well.

Films that cover the subject of Alzheimer's usually show the emotional and physical toll the disease takes on those who have it, but what is often kept off-screen are the heart-wrenching indignities that come along with being an Alzheimer's patient. There are several moments in Still Alice that leave the audience feeling uncomfortable, but these scenes do depict the truth of what actual Alzheimer's patients go through. In one such scene, Alice forgets where the bathroom in her own home is located, and accidentally wets herself. In another part of the movie, Alice visits her daughter, Anna, in the hospital after she has given birth to twins. While in awe over the babies, Alice doesn't recognize who Anna is. This is especially heartbreaking as Anna herself tested positive for the Alzheimer's gene, and the audience is well aware that she has a significant chance of suffering the same fate as her mother.
The choice made by directors Richard Glatzer and Wash Westmoreland to include the raw side of Alzheimer's that strips patients of their dignity was definitely bold. Through every step of her decline Alice strives to hang onto herself and remain, as the film's title states, "still Alice". Ultimately, she fails to hold onto the person she used to be, but for the movie to be in any way realistic this is how things needed to play out. All forms of Alzheimer's steal a patient's memories, personality, and former life. But not only are those living with the disease affected, it often drastically alters the lives of family members and caregivers as well.

Alice's husband, John, largely outsources his role as a caregiver due to his demanding career as a physician. In this respect, Alice is quite fortunate as many Alzheimer's patients don't have the financial wherewithal to afford excellent full-time care. Alice's eldest daughter, Anna, and her son, Tom, check-in with their mother as much as they can, but are unable to be day-to-day caregivers because of their own personal and professional commitments. This scenario is something that is much more common in the lives of Alzheimer's patients, who need increasing amounts of care as the disease progresses.

Alice is once again more fortunate than many actual Alzheimer's patients, as her youngest daughter, Lydia, is willing and able to temporarily put her acting career on hold and move across the country to care for her. This act of love combined with the work of her dedicated professional caregiver, and financial stability provided by her family's wealth, guarantee Alice the best possible palliative care that she can get.


These financial and familial advantages aside, the film sends an important message: no matter how much money or support one has, Alzheimer's inevitably takes the same toll on each and every person who has the disease. Still Alice (available on Xfinity and DTV) has been praised as an excellent portrayal of the disease by the Alzheimer’s community, and is an excellent film to watch by viewers directly involved with the illness, as well as those who want more insight into early-onset Alzheimer's.
Maria is a freelance writer currently living in Chicago. She has a Bachelor of Arts degree in English from the University of Illinois at Chicago with a minor in Communication. She blogs about environmentally friendly tips, technological advancements, and healthy active lifestyles.