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Craig Lindsay and Anna Greenberg

Caregiver distress: A crisis grows

A conversation between Anna Greenberg, Interim President and CEO of Health Quality Ontario, and Craig Lindsay, an individual who has had significant experience as a caregiver. Anna and Craig discuss both the broader issue of caregiver distress and the very personal challenges that an individual caregiver can face.

Anna Greenberg: Three years ago, Health Quality Ontario released The Reality of Caring, a report that documented the increased percentage of unpaid caregivers (caring for home care clients) reporting stress and burnout. Since the release of that report, the situation has become worse - not better. The most recent data indicates 44% of home care clients with an informal/unpaid caregiver reported at least once that their caregiver was experiencing distress, anger or depression related to their role and/or were unable to continue their caregiving activities. This is a 21% increase in a 2-year period.

Craig Lindsay: From personal experience I can attest to this. My mother, Lois, lived alone for the last 16 years of her life. She needed some minimal support; someone to go to appointments with her, help with understanding her medications, general housekeeping, and keeping her home safe and accessible. I could do that, and my brothers helped too. As she aged her needs changed. Unfortunately, mine did too. My kidneys failed and I started dialysis three times a week. My ability to support her care, after she received the diagnosis of terminal lung cancer, was not what it should have been. For those last weeks I struggled to help her die comfortably at home. Juggling these responsibilities inevitably led to stress and I know I am by no means unique.

I would sleep at my mother’s house, waking up two or three times a night to the ringing of a bell that meant she needed to use the washroom. I would get up to help her, reassure her, make sure she had all her medications, and check to see if she needed pain control or if the oxygen canister bedside the bed needed to be changed. I woke up exhausted and after arranging for private nursing during the day, would go home to look after things there and then have kidney dialysis in the afternoon. After that, I would return to my mother’s house to start the process all over again.
Anna Greenberg: What you describe is something we know so many informal caregivers - usually family members, friends or neighbours - experience. We know that 96% of home care clients who receive home care for long periods of time rely on informal caregivers, and they require more care compared to home care patients four years ago. They are also older, often living with dementia and have greater physical and cognitive impairments. While there are 23% more home care clients compared to three years ago, the number of visits by a paid home care provider has increased by 8%.

Craig Lindsay: I had worked in health care, as a flight paramedic, so I understood how to help my mother navigate the system for care. I knew her doctors and specialists, her health concerns, and what services she needed and how to access them. It is needlessly complex, and not very well-coordinated, but between the two of us we managed. Still, when my mother left the hospital for the last time, I expected the health system would automatically arrange a support team for palliative care at home, including nursing care, psychological counselling, and home visits by a palliative care doctor. Instead, I didn’t get any information about how to keep my mother comfortable at home and was left to figure things out on my own. Toward the end, when I felt I was at my limit, I thought about driving my mother to the emergency department. I was resentful and angry that the system couldn’t spare the resources to let her die at home in comfort. After hanging on for a few days I called the nurse at the cancer clinic to arrange a move to a hospice, where my mother received excellent care until she died three days later.

Anna Greenberg: We often hear from caregivers how time-consuming and difficult it can be. On average, long-stay home care clients receive about 21 hours of care per week from caregivers who are family or friends. While rates of distress among these caregivers vary widely by region in the province, Ontario has the highest percentage of home care patients with distressed caregivers among all provinces, where comparable data are available.

Craig Lindsay: Looking back, I didn’t know how to ask for help or who to ask for help. I just didn’t feel I was doing a very good job of managing all of the conflicting demands that I faced. After my mother died, I heard other people in different parts of the province talk about having a personal support worker care for their loved one eight hours a day, plus nursing care and physician home visits. I remember thinking, I wish my mother had been in that postal code.

Anna Greenberg: A lot more awareness of these issues has been raised by caregivers themselves and by different organizations. Since 2015 on an annual basis, The Change Foundation has documented the growing challenges facing unpaid caregivers and the stories they have to tell from across the province. Health Quality Ontario’s annual assessment of the health care system – Measuring Up – reports statistics consistent with these narratives, and we have been working with partners to introduce a new routine survey in Ontario that would ask informal caregivers of home care clients about their experiences.

Craig Lindsay: I just hope my story can help others learn ways to make the system better for people who want to receive care at home, and for those who are caring for them.

Previous Article Measuring Up 2018: Complex Challenges

9 comments on article "Caregiver distress: A crisis grows"

Caron Leid

I have been an informal caregiver to my mom for going on 19 years and balancing raising my son - so apart of the sandwich generation. I am not sure what postal code receives psw hours and nursing supports. I have limited hours that have not changed in years- 14 psw hours per week, and now that my mom is in Palliative care- she gets a nurse twice a week. All of that care had to be advocated by myself.

I have a paid caregiver so that I can work, however, I have never been able to fully embark on a career path, due to my mother's care. I have no family help My mother was diagnosed with Alzheimer's disease at the age of 57 and my father passed away 14 months after her diagnosis. There were little supports back then. In Ontario, there is a waiting list to get into a nursing home. In addition, my mother does not qualify for Hospice, as the determination of her death is unknown. I am sure we have saved the health care system hundreds of thousands of dollars. I now have to brace myself for her impeding death. I have suffered from Compassion fatigue and depression. I became a single parent 6 years ago (I suppose because my ex-husband didn't think I had enough responsibilities)

Collecting data on an issue that has been going on forever, is not going to solve the problem. Caregivers have no time for themselves, far less discussing the issues. It is a known problem, less talking more action. There is no caregiver subsidy, the credit that Revenue Canada offers is so convulted, I have never been able to receive it in 19 years. Employers have no form of modified work arrangement for individuals in this situation. We keep talking, and nothing is being done. Statistics and narratives, do not assist people living with this.

Anonymous Caregiver

@Caron: From one caregiver to another, hats off to you for taking care of your mom and child! I salute your compassion and dedication to your family. I can only imagine what you are going through and I wish there was real help available to us that can let us live our lives at the same pace as we would like to... Hang in there; sending loads of well wishes your way.

Denyse Lynch

Canron Leid's last paragraph, especially her last 2 sentences sum up, sadly & accurately most caregivers' circumstances & situations. I too cared for my dad for 14 years and now I carry on caring for my husband who has chronic conditions. Have done all the advocating, requesting, at times pleading. Have taken part in numerous initiatives as a "Patient Advisor" in research projects. I have no more to contribute except to say: Where are the support telephone, skype lines, easy to find & navigate resources on the internet and truly helpful follow-up, i.e. someone to talk with for re-assurance, confidence, assistance post a major surgery +++ ? The powers that be are great, terrific at research, gathering data...where are the actions to support caregiver needs?

Anonymous Caregiver

Great information there. Like Craig and Caron, I have two elderly parents who have been disabled for quite sometime and my brother and I take full-time care of them. While one is on dialysis, the other has a weak heart and extensive osteoarthritis in her body that does not let her become fully self-sufficient. Between both parents, we have been in and out of the hospitals numerous times and that too for extended periods. My brother put his career of 10-years on hold and started caring for both full-time while I worked a full-time job and was barely able to make ends meet. It still was better than leaving my parents at a long-term care facility. After the scary incidents of how patients get treated at these facilities and nursing homes, we both knew that we needed to take care of our parents ourselves and not rely on anybody else. However, I wish that there was a caregiver subsidy available here in Canada and especially in Ontario like Medicaid offers in States. Once eligible (and usually the eldest kid can qualify), they get paid close to a minimum wage amount on hourly basis, which gives our elderly to stay at-home in comfort of their own surroundings with their loved ones. This definitely needs to be brought up on both provincial and national levels. We love our elderly parents - there is no ifs and buts about it - but the burnout is definitely a reality that we cannot avoid... Both of us have very limited social lives and most of our time is spent in hospitals or at other healthcare facilities. As a matter of fact, I believe that taking time off for their care (even if it meant using my own vacation days) played a huge role in my recent lay-off from work. So now here we are... our parents continue to keep worse health-wise and we are home-bound trying to find jobs that would pay the bills and let us care for our lovely parents at the same time *sigh*. The sadness of seeing your loved ones deteriorate both physically and cognitively is too great of a burden. I have had enough of the talks and stats and the empathy; I wish to see real action that can help us sustain in life ourselves and benefit our loved ones too. We are certainly saving the government tons of money by taking care of them directly and not enlisting them for facilities that are already overcrowded and overwhelmed with the aging population. The least we can get is proper support (both emotionally and financially) so that we do not run out of steam ourselves.


Anonymous Caregiver in Ontario.

Danielle Van Duzer

Thank you HQO for continuing to raise awareness that caregivers are in crisis. On behalf of The Ontario Caregiver Organization, I want to share information about who we are and what we do. We are a new organization that exists to help enhance the experience of caregivers and be a point of contact for information about caregiving and resources available. We agree it's time to act. Our new strategic plan identifies the priorities that we'll focus on over the next three years. These priorities were defined based on feedback from Ontario Caregivers.

1. Enhancing access to resources by reducing silos, closing gaps and sharing successes.

2. Co-creating solutions with caregivers by working with networks of individuals, organizations and advisory groups.

3. Inspiring innovation and amplifying existing programs.

4. Increasing public awareness of the role of caregivers in our communities.

5. Understanding Ontario’s caregivers and their needs.

6. Partnering with government to give voice to Ontario’s caregivers.

Visit for more information or follow us on twitter @CaregiverON.

Thank you again for providing a platform to continue this important conversation.

Danielle Van Duzer


At HPCO we recognize the importance of the invisible unpaid work carried out by parents and caregivers, as well as the volunteer work done in the community. It’s important to recognize that caregivers come from all walks of life and take on many roles. It's important to acknowledge the vital role of caregivers and their experiences in providing care and support for their loved ones with life-limiting illness and understand the need to provide choice and supports for not just the patient but also the caregiver. If you are a caregiver or know someone who is a caregiver that is looking for support, resources and information – please visit the Caregiver Modules at

Diana MacDonald

3 years ago the Central East LHIN started offering the Powerful Tools for Caregiver workshop. A free workshop/ 1.5 hours a week for six weeks. Teaches skills and tools to caregivers to help them manage their health while taking on the often overwhelming role of caregiving. This is a brief 2 minute video with caregivers describing their experience in this workshop. There is so much more we need to do in the direction of supporting caregivers this is just one small step towards the work that needs to be done, but it is an impactful one.

Renee Gould

I have been a caregiver for over 20 years to my son with DMD. Then again for my sister as she passed away with cancer. I had to bring in my own cot to sleep on before they would move us to a room big enough to accommodate it when the finally realized I wasn’t leaving, Both times never offered respite from nursing or volunteers to go get something to eat or to have even a short break. No offer of food or drinks for me the caregiver. When my so. Was home with pneumonia I stayed home with him For 3 weeks straight with no break. 24 hour care is difficult to navigate when you are exhausted and the only one responsible for desicisions.

Melissa Erdodi

I was caregiver to my spouse for approximately 4 years at varying degrees. I am a nurse, who needed to work full time to maintain our basic necessities and his medical needs. Caregiving and navigating the health care system is a full time job on its own. It was literally like working 2 full time jobs. No one can maintain that without some level of burnout. Our system puts unrealistic expectations on our unpaid caregivers.

I try to improve the health care journey for those I am privileged to assist in my professional life through direct practice and leadership.

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