Helpful resources

The information for these listings was taken directly from the websites of the organizations or the authors highlighted below, including information from book jackets.

Advance Care Planning in Canada

This organization can help you create an advance care plan and offers a wealth of resources on its website.
Mailing address for Advance Care Planning in Canada is:
c/o Canadian Hospice Palliative Care Association
M332-1554 Carling Avenue
Ottawa, Ontario K1Z 7M4
(613) 241-3663
(800) 668-2785
Email: info@advancecareplanning.ca
www.advancecareplanning.ca

André Picard

Author of Neglected No More
Random House Canada
www.penguinrandomhouse.ca
BIO: André Picard is a health reporter and columnist for the Globe and Mail, where he has been a staff writer since 1987. He is also the author of five bestselling books. André is an eight-time nominee for the National Newspaper Awards, Canada’s top journalism prize, and past winner of a prestigious Michener Award for Meritorious Public Service Journalism. He was named Canada’s first “Public Health Hero” by the Canadian Public Health Association on Mental Illness and Mental Health, and received the Queen Elizabeth II Diamond Jubilee Medal for his dedication to improving health care. André is a graduate of Carleton University of Ottawa, and has received honorary doctorates from six universities, including UBC and the University of Toronto.
Extract from the back cover of Neglected No More
With empathy, clarity and hard-worn insight, veteran health reporter André Picard reveals the full extent of Canada’s eldercare crisis, laid bare by the ravages of COVID-19 – and offers an urgently needed prescription to fix a broken system.
When COVID-19 spread through seniors’ residences across Canada, the impact was horrific. Along with widespread illness and a devastating death toll, the situation exposed a decades-long crisis: the shocking systemic neglect towards our elders.
Called in to provide emergency care in some of the hardest hit facilities in Ontario and Québec, the military issued damning reports of what they encountered. And yet, the failings that were exposed – unappetizing meals, infrequent baths, overmedication, physical abuse and inadequate personal care – have persisted for years in these institutions.
In Neglected No More, André Picard takes a hard look at how we came to embrace mass institutionalization, and lays out what can and must be done to improve the state of care for our elders, a highly vulnerable population with complex needs and little ability to advocate for themselves.
Picard shows us that the entire eldercare system – fragmented, underfunded and unsupported – is long overdue for a fundamental rethink. Our elders deserve no less.

Action for Reform of Residential Care (ARRCBC)

This association is dedicated to promoting quality of life in long-term care facilities in British Columbia through education and advocacy.
The association’s primary goal is to achieve a long-term care system where residents are supported to live out their lives as fully and joyfully as possible. Members of the association include clinicians, researchers, family members and other citizens concerned with the care provided in long-term care facilities.
ARRC believes that:

quality of life is important all across the lifespan;
quality of life requires quality of care and both are non-negotiable;
quality of care is closely linked to quality working conditions for care providers;
care is a relationship between those receiving and providing care and meaningful and sustainable relationships between seniors and care providers are imperative to quality of life;
long-term care facilities must support seniors’ health and well-being/mental health, enable them to stay as active as possible and to participate in meaningful activities and relationships;
the institutional model is dehumanizing and must be replaced by a person-centered model of relational care.

For more details about this association’s advocacy and for resources to support quality of life, go to www.arrcbc.ca where you can also sign up to become a member of ARRC.

Advocacy Centre for the Elderly (ACE)

A community-based legal clinic for low-income seniors
55 University Avenue, Suite 1500
Toronto, ON M5J 2H7
(416) 598-2656
1-855-598-2656 (toll free)
www.acelaw.ca
(Email address not available)
In 1983, a group of individuals interested in the legal issues of the older population applied for funding from the Ontario Legal Aid Plan (the predecessor of Legal Aid Ontario) for a new legal clinic to serve the low-income, older adult population in Ontario. This group was organized by members of Concerned Friends of Ontario Citizens in Long-Term Care Facilities (see the listing below for Concerned Friends), and included lawyers, community workers, health care providers, a small-claims court judge, seniors’ activists and other community volunteers. The funding application was successful and the Advocacy Centre for the Elderly (ACE) opened its doors in 1984 on Holly Street in Toronto.
ACE was the first community legal clinic in Canada to provide legal services to older adults with a focus on elder law issues such as health care consent, home and community care, retirement home tenancies, public pensions, income security programs, consumer protection and elder abuse.

Brain Tumour Foundation of Canada

One-on-one peer support for anyone who has been impacted by a brain tumour diagnosis.
We are a dedicated team of volunteers, patients, survivors, family members, health care professionals and staff, determined to make the journey with a brain tumour one full of hope and support. We work collaboratively to serve the needs of those Canadians affected by all types of brain tumours.
www.braintumour.ca
205 Horton Street East
Suite 203
London, Ontario N6B 1K7
(800) 265-5106 (toll free)
(519) 642-7755 (locally)

Canadian Centre for Caregiving Excellence (CCCE)

Programs and supports for caregivers
2 St. Clair Avenue West, Suite 900
Toronto, ON M4V 1L5
(416) 322-5928
www.canadiancaregiving.org
Email: info@canadiancaregiving.org
The CCCE is a Toronto-based nonprofit organization that supports and empowers caregivers and care providers, advances the knowledge and capacity of the caregiving field, and advocates for effective and visionary social policy, with a disability-informed approach.
Knowledge-sharing is an important part of the caregiving journey. It allows caregivers to learn from each other and creates a sense of community through shared lived experiences. Caregivers and caregiving organizations across the country have created tools and resources to support and empower caregivers in their role.
We bring together stakeholders, translate knowledge to practice, scale what works and fill gaps through innovation. Our expertise and insight, drawn from the lived experiences of caregivers and care providers, help us campaign for better systems and lasting change. We are more than just a funder; we work closely with our partners and grantees towards shared goals.
Our Vision: A Canada leading the way in quality care, where caregiving is valued, caregivers are supported and people accessing care are central to policies and practices.

Carefor Health & Community Services

Carefor is Eastern Ontario’s largest and oldest home healthcare and community support charity.
We offer services to clients and caregivers across three local regions: Renfrew County, Ottawa Region and Eastern Counties (S.D.G. and Prescott-Russell). Our staff work with you, your family and your health team to keep you well and at home longer.

760 Belfast Road
Ottawa, Ontario K1G 6M8
(613) 749-7557

2580 Carling Avenue
Ottawa, Ontario K2B 7H5
(613) 820-2398

2576 Carling Avenue
Ottawa, Ontario K2B 7H5
(613) 721-6496

Caregiver-Centered Care

Supporting Family Caregivers in Healthcare
Caregiver-Centered Care is person-centered care for family caregivers. It is about a collaborative working relationship between families and health and community care professionals. This means supporting family caregivers in their caregiving role, decisions about services, care management and advocacy.
Family caregivers play a critical role in our healthcare system. We all need to identify, engage, and support family caregivers, but it is no always easy to understand how. A person-centered approach means respecting and meaningfully involving the care receiver’s family caregiver in the planning and delivery of supportive services while also recognizing and addressing the family caregiver’s own needs, preferences and well-being. Ultimately, the aim is to integrate family caregivers as partners in care.
Leading this initiative:
Jasneet Parmar, Lead Investigator, Jasneet.parmar@ahs.ca
Sharon Anderson, Research Coordinator, sdanders@ualberta.ca, (780) 953-5541

Caregiver Grief Connexion

Strengthening support for bereaved caregivers
Our mission is to share knowledge, skills and resources on grief for bereaved caregivers, for their families, friends and the health and social service workers who support them. Caregiver Grief Connexion is supported by the Canadian Centre for Caregiving Excellence (CCCE) powered by the Azrieli Foundation.
Caregiver Grief Connexion offers free and accessible educational resources on caregiver grief and bereavement for health and social service professionals and care providers.
www.caregivergrief.com
Email: info@caregivergrief.com
(514) 399-9082

Caregiver Support Services – Toronto Central

Community Care Unit, Caregiver Support and Wellness Program and Individualized Support
A caregiver is someone who looks after a sick, frail or disabled relative, friend or neighbour. Supportive programs and services are available to help caregivers cope with their responsibilities and may include self-help, informal counselling, recreation and resources.
For a complete list of organizations serving all or part of Toronto Central, go here:
www.torontocentralhealthline.ca

Concerned Friends of Ontario Citizens in Care Facilities

A voice for quality in long-term care
130 Merton Street, 6th Floor
Toronto, Ontario M4S 1A1
(416) 489-0146
(855) 489-0146 (toll free)
Email: info@concernedfriends.ca
Concerned Friends of Ontario Citizens in Care Facilities is a nonprofit registered charity that I found extremely helpful, and this organization services all of Ontario. If you have a loved one in care, or you are shopping for a good facility, and you need help and support, know that you really do have friends at www.concernedfriends.ca.
The Concerned Friends organization is supported by membership and donations without government funding. Its activities are undertaken entirely by volunteers, and its mission is to:

advocate for a quality long-term care system that meets the needs of residents, families and staff;
address issues of quality physical and emotional care, and the general conditions facing Ontario residents of long-term care;
bring concerns to the attention of the general public and the provincial government to effect constructive changes in statutes and regulations;
provide information to families of residents in long-term care facilities concerning residents’ rights and responsibilities under government legislation, and
help families advocate on behalf of their relatives in long-term care facilities.

Donna Thomson

Caregiver, Author and Educator
Blog/Website: www.donnathomson.com
Facebook: The Caregiver’s Living Room; https://www.facebook.com/donnathomsonauthor/’
X (Twitter): @thomsod
BIO: Donna is a member of the Advisory Council for the Canadian Centre for Caregiving Excellence (CCCE) and she is an author, educator, blogger and speaker on issues relating to family caregiving, disability and aging. She is a patient and family advisor on health research and policy, and she teaches family caregivers and health researchers how to partner on projects at McMaster University. She also facilitates a free online course called Caregiving Essentials and hosts monthly webinars offered free by McMaster University
Details about the Caregiving Essentials course and webinars are at the following link: https://continuing.mcmaster.ca/programs/health-social-services/caregiving-essentials/
The Caregiving Essentials YouTube page with past webinars can be found here: https://www.youtube.com/playlist?list=PLgW-AY2zjrEUYr28ebAHOY1Edc5WA3DMM
Donna Thomson is the co-author (with Zachary White, PhD) of The Unexpected Journey of Caring: The Transformation of Loved One to Caregiver
https://www.amazon.ca/Unexpected-Journey-Caring-Transformation-Caregiver/dp/1538174057/ref=tmm_pap_swatch_0?_encoding=UTF8&qid=1699558640&sr=8-1
About The Unexpected Journey of Caring
Informed by original caregiver research and proven advocacy strategies, this book speaks to caregiving as it unfolds, in all of its confusion, chaos, and messiness. Readers won’t find well-intentioned clichés or care stereotypes in this book. There are no promises to help caregivers return to a life they knew before caregiving. No, this book greets caregivers where they are in their journey—new or chronic—not where others expect (or want) them to be.
Review of The Unexpected Journey of Caring
Speaker and consultant Thomson. . . and White, associate professor at Queens University in Charlotte, N.C., provide gentle guidance to help readers who are becoming caregivers in this instructive guide. The authors write honestly about the feelings of loss during this transition, including grief over a future that will not happen. They explore the feeling of disorientation during the initial months of caregiving while recognizing how the caregiver’s relationships with one’s own family and friends can be affected, manifesting commonly in intolerance or disappointment. In their “A New Way of Seeing and Being” that concludes each chapter, they ask readers to optimistically reframe the hardships of caregiving by emphasizing that “our responsibilities and connections highlight how we are rooted and grounded with others.” The book includes a variety of practical and tangible actions for the caregiver, including resources and advice on how to navigate both real-life and online support systems, strategies for getting help from one’s social network, and advice for contacting medical professionals. Specific tools such as the ABCD (Asset Based Community Development) approach and Atlas CareMaps (as well as specific libraries and community centres) are also included. Any caregiver will find an abundance of assistance here.
― Publishers Weekly
Donna Thomson is also the author of The Four Walls of My Freedom, The House of Anansi Press, 2014
https://www.amazon.ca/Four-Walls-My-Freedom/dp/1770894799
About The Four Walls of My Freedom:
Donna Thomson’s life was forever changed when her son Nicholas was born with cerebral palsy. A former actor, director, and teacher, Donna became his primary caregiver and embarked on a second career as a disability activist, author and consultant. Thomson vividly describes her experience in treading delicately through daily care, emergencies, and medical bureaucracy as she and her family cope with her son’s condition while maintaining value and dignity (for Nicholas, too). She demonstrates the vital contribution that people with disabilities make to our society and addresses the ethics and economics of giving and receiving care.
Reviews for The Four Walls of My Freedom:
A clear-eyed look at the value of a life … What if a life was judged not by its monetary worth or possible economic benefit to society, but as a series of complex and rewarding relationships?
— Globe and Mail
Donna Thomson’s world changed utterly when she gave birth to a severely disabled son – with a wicked sense of humour … She makes a powerful case for caring to be accorded respect, and demands that we all think about what really matters.
— The Times (UK)
Both The Unexpected Journey of Caring and The Four Walls of My Freedom are available from all major online booksellers and from public libraries.

Dying With Dignity Canada

Dying With Dignity Canada (DWDC) is the national human-rights charity committed to improving quality of dying, protecting end-of-life rights, and helping Canadians avoid unwanted suffering.
500-1835 Yonge Street
Toronto, Ontario M4S 1X8
(416) 486-3998 (tel.)
(800) 495-6156 (toll free)
(416) 486- 5562 (fax)
Email: info@dyingwithdignity.ca

Home and Community Care Support Services

Formerly known as Local Health Integration Network from March 2020 to April 2021 and as the Community Care Access Centre up to March 2020
There are 14 offices in Ontario for Home and Community Care Support Services that individuals can contact for home and community care services. It is the organization responsible for placements in long-term care facilities.
4200 Labelle Street
Gloucester, Ontario K1J 1J8
(800) 538-0520 (toll free)
(866) 902-5446
(613) 745-5525 (Champlain Ottawa office)
Email for the Ottawa office: champlainquality@hccontario.ca

Hospice Care in Ottawa, Ontario

How to get palliative care in Ottawa: The referring physician can contact the on-call nurse at 613-260-2906 ext. 3, after 4 p.m. any day of the week and on weekends. The referring physician will provide the details of the case to the on-call nurse to determine if an urgent admission is needed.

May Court Hospice
114 Cameron Avenue
Ottawa, Ontario K1S 0X1
(613) 260-2906

Ruddy-Shenkman Hospice
110 McCurdy Drive
Kanata, Ontario K2L 2Z6
(613) 591-6002

Bruyère Palliative Care Unit
“Our bilingual palliative care unit at the Élisabeth Bruyère Hospital provides care to patients and families requiring in-hospital care. Patients may be admitted for a short period of time to manage difficult pain and symptoms, and will be discharged once these needs are met. Other patients may be admitted for care at the end-of-life when their care needs cannot be met in other settings. We work closely with patients and their families to provide care that respects a diversity of cultures and beliefs.”
43 Bruyère Street
Ottawa, ON K1N 5C8
Clinical Admissions Coordinator
(613) 562-6262, ext. 1688

McMaster University

Optimal Aging Portal
Caregiving is one of the greatest gifts we can provide a loved one. But it also involves many challenges to the health, well-being and financial security of caregivers. Eighty percent of older adults and people with long-term health issues are cared for at home by family and friends. Can you relate? Go to www.mcmasteroptimalaging.org to browse the following topics: Supportive homes and communities, health care and health service delivery, autonomy and independence, cognitive health and dementia, mobility and transportation, healthy lifestyles and wellness, staying connected, financial wellness and employment and so much more.

Not Just Tourists (NJT)

Take a suitcase, change a life!
www.njt.net
Email: info@njt.net
Email for the Ottawa Chapter: njt.ottawa@gmail.com
NJT is 100% volunteer run. It operates without a budget and it does not accept or solicit financial donations. You can help us deliver medical supplies to a needy clinic on your vacation. We provide the suitcase, medical supplies and letters. We accept supplies such as bandages, syringes, tapes, gowns, masks, gloves, IV kits, and urinary and surgical equipment. You can volunteer to pick up, sort and pack medical supplies, contact travellers, speak to groups and respond to emails. If you submit the name of a foreign non-profit clinic in need, we will do our best to get much needed medical supplies to them.
If you’ve got a full-size suitcase on wheels in decent condition, we can put it to good use!

Ontario Caregiver Organization

1-888-877-1626 or 416-362-2273
To access information about caregiver services and supports in your area, please call the Ontario Caregiver Helpline: 1-833-416-2273.
The Ontario Caregiver Organization started The Undercover Kindness Project as a heartfelt way to inspire Ontarians to show family caregivers some much needed kindness. We invited people to share about the caregiver in their life and how an undercover act of kindness could help make their day a little bit better. Then we quietly planned the “act” with the person who did the nominating and OCO ambassador Erica Ehm. We wanted to help them do something meaningful, that would acknowledge the caregiver and make being a caregiver just a bit easier.
That’s the point of The Undercover Kindness Project. Anyone can get involved. And you don’t have to do anything elaborate. Acts of kindness can come in many different forms, from a cup of coffee, to helping them at home. Simply listen, support, and if you see something a caregiver needs, do an act of kindness that could make a real difference to them.
For more details on The Undercover Kindness Project go here: www.ontariocaregiver.ca.

Retraite en Action

Organisme francophone situé à Ottawa (Ontario)
Retraite en Action offre un programme d’activités intergénérationnelles en français aux retraités de la région de la capitale nationale et d’ailleurs, afin de favoriser leur mieux-être.
40 rue Cobourg
Patro d’Ottawa
Ottawa (Ontario)
K1N 8Z6
Ou visiter leur site web pour de plus amples renseignements sur les activités qui pourraient vous intéresser.

ROSSS – Ottawa

ROSSS champions the wellness of older adults and adults living with disabilities in rural Ottawa South
Manotick Location Head Office
1096 Bridge Street
Manotick, ON K4M 1J2
(613) 692-4697
www.rosss.ca
Email: info@rosss.ca
ROSSS plays a critical role in our local health care system providing affordable, quality health and social programs that support older adults, adults living with disabilities, and their caregivers who reside in rural communities south of Ottawa. In close collaboration with its clients, ROSSS delivers essential services that foster independence, promote quality of life, and maintain a healthy and safe environment for clients who continue to live in their homes. ROSSS also facilitates access to additional health and social programs to meet each client’s individual needs.

Siblings Canada

An initiative of the Canadian Centre for Caregiving Excellence (CCCE)
Siblings Canada (formerly The Sibling Collaborative) recognizes that while our experiences as siblings are diverse and profound, our perspectives, needs and ideas are often overlooked. We exist to ensure the Canadian siblings of people with disabilities are recognized, valued and supported. Siblings Canada raises awareness of the critical role siblings play in creating robust and responsive systems of care for people with disabilities. We serve as a source of relevant knowledge, learning and resources for sibling caregivers and the organizations supporting them.
For more information on this initiative go to: www.canadiancaregiving.org

Slay Society Inc.

Providing support and hope
www.slaysocietyinc.ca
Email: slaysocietyinc@gmail.com
Slay Society Inc. promotes a healthy experience for those living with glioblastoma and their caregivers by providing funding to families and access to information, counselling and support group programs.
This organization was founded by Laura Dill, author of Daughter: Embracing the difficult journey of caring for a dying parent without falling apart, which is available through her foundation or amazon.com and amazon.ca.
On February 21, 2023, CBC News published an article about Laura Dill’s many acts of kindness in support of families in need. The article can be found by searching She lost both parents to glioblastoma. Now she’s helping other stricken families ‘slay their dragons’, by writer and editor Alistair Steele.

The Compassionate Friends of Canada (TCF)

Supporting bereaved parents across Canada, grieving the death/loss of a child at any age, from any cause, at any time.
TCF offers friendship, understanding, and hope to bereaved parents, siblings and grandparents. We have learned through our own experiences that the death of a child, sibling, or grandchild, causes a pain that is often best understood by others who have also experienced such a loss.
Friends can help you celebrate good times and provide support during bad times. Friends prevent isolation and loneliness and give you a chance to offer needed companionship, too. Friends can also increase your sense of belonging and purpose.
For a complete list of all of the Ontario chapters, with contact information, go to: www.tcfcanada.net