THE CAREGIVERS' LIVING ROOM A Blog by Donna Thomson

Webinar: Join Us to Learn a Life-Changing Approach to Wellbeing

2026-01-09T14:20:00.006-05:00

There is so much talk about self-care in the online caregiving discourse that it's just plain exhausting. What we need is a simple and realistic way to think about how to meet our own physical and emotional needs while we give care to another. I found a great one and it's called The F-Words in Childhood Disability (but it's not just for children with disabilities, I've used it for myself and it truly changed my life).

I'm excited to tell you about an upcoming F-Words webinar! Dr. Peter Rosenbaum will join me in conversation about how this approach came to be and how it has helped tens of thousands of families around the world. The webinar is on January 15 at noon EST and you can register for the link HERE.

I first learned about the F-Words when I heard about this article that my friends Dr. Peter Rosenbaum and Dr. Jan Willem Gorter wrote for a medical journal. The F-Words are: FUNCTION, FAMILY, FITNESS, FUN, FRIENDS AND FUTURE. The F-words build upon the World Health Organization's (WHO's) International Classification of Functioning, Disability and Health (ICF) framework. The ICF framework shows how body structure and function, activity, participation and environmental factors and personal factors are interrelated and equally influence our health and functioning.

These domains are key ingredients for the health of any child growing up with a disability but I began to think about how we could use this framework for everyone in the family, especially the caregiver!

Here is the simple F-Words template. You can download and fill it in using images or words (images are helpful is the person you care for has cognitive or visual challenges). Everyone in the family can fill in a personal template and then share the results to see who can help whom reach their goals:

Think about your own personal goals in each of the F-Word domains. Given the givens, what can you realistically hope for in your own Function, Family, Fitness, Fun, Friends and Future? What are activities or goals that you could add into these domains? Use this template to think about balance in your caregiving life and share it with your loved one, your extended family, friends and even the medical professionals who support you.

Ask yourself how your family members' F-Word goals mesh with your own. Can you negotiate or use these goals to help create a schedule of activities that reflect your best effort at balance?

For more information on the F-Words, check out the range of free tools and resources on the CanChild website HERE. And join us for the webinar if you can to learn more about how the F-Words changes caregivers' lives (including my own) for the better!

A Caregiver's Twelve Days of Christmas

2025-12-22T17:12:00.001-05:00

My words to the carol "The Twelve Days of Christmas" are fun, but they reveal a truth about caregiving, too. We all begin with a task or two. "Oh, it's not much", we think. "That's no trouble at all." And it isn't. But then two tasks becomes four and four becomes eight, and so on. Soon, we discover that we are very, very tired. But nevertheless, we persevere. So here's to all of you in celebration of the loving care you provide every day of the year.

On the First Day of Christmas on my list of things to do: I cooked dinner for my fa-mi-ly.

On the Second Day of Christmas on my list of things to do: I shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Third Day of Christmas on my list of things to do: I called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Fourth Day of Christmas on my list of things to do, I picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Fifth Day of Christmas on my list of things to do, we went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Sixth Day of Christmas on my list of things to do, I did six loads of laundry, went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Seventh Day of Christmas on my list of things to do, I bought seven gifts for nurses, six loads of laundry, went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Eighth Day of Christmas on my list of things to do, I disinfected bathrooms, seven gifts for nurses, six loads of laundry, went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Ninth Day of Christmas on my list of things to do, I ordered the meds, disinfected bathrooms, seven gifts for nurses, six loads of laundry, went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Tenth Day of Christmas on my list of things to do, I calmed jangled nerves, ordered the meds, disinfected bathrooms, seven gifts for nurses, six loads of laundry, went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Eleventh Day of Christmas on my list of things to do, I wrapped all the presents, calmed jangled nerves, ordered the meds, disinfected bathrooms, seven gifts for nurses, six loads of laundry, went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Twelfth Day of Christmas, I poured myself a drink, calmed jangled nerves, ordered the meds, disinfected bathrooms, seven gifts for nurses, six loads of laundry, went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

HAPPY HOLIDAYS, EVERYONE!

From me and my family to you and all of your loved ones, I wish you a very Merry Christmas and Happy Hanukkah this holiday season. May 2026 be a good year for all of us! xox

Happy Birthday to my Mum in heaven (December 24) and Merry Christmas too!

A Concept for Giving Back to Caregivers

2025-12-10T11:59:00.001-05:00

A Concept for Giving Back to Caregivers

There have been times around the holiday season of giving when I have thought, “I give to others every day. Will anyone give to me? If they do, what do I need or want?” I wasn’t thinking of a sweater or a new pair or socks – I was thinking of care. I was daydreaming about someone caring for me, the caregiver.

Eva Feder Kittay is a philosopher and mother of an adult daughter, Sesha, who has severe cognitive disabilities. Eva also cared for her ailing and elderly mother until last year.

Eva coined the word doulia to describe a new paradigm for reciprocity for caregivers in the community. She describes doulia as an ethical principle that recognizes giving care as an important contribution to the overall good of society. “We can ask whether parents or kin who assume the role of caregiver should have claims on the larger society to support them in their efforts to provide care. If, for all the effort and care in raising a child with disabilities into adulthood, there is no payback (conventionally understood) to the society at large, can we still insist that there be a state interest in helping families with the additional burdens of caring for a developmentally disabled child? Is there a state interest in assuring families that their vulnerable child will be well cared for when the family is no longer able or willing to do so?”[i] Kittay answers her own question with a resounding yes and that response is rooted firmly in her own mothering experience. She describes a concept of interdependency or “nested dependencies” that recognizes the inevitability of dependency as a fact of being human. It is via the idea of doulia that reciprocity can be realized through policy because the driving force is an equality that “our full functioning presumes our need for and ability to participate in relationships of dependency without sacrificing the needs of dependents or dependency workers.”[ii]

Here Kittay is advocating an ethical framework and moral obligation for society to look after caregivers so that caregivers can carry out that care without sacrificing their own wellbeing. She is talking about ‘payback’ for the caregiver.

We know doulia as friends and family members who help a new mother by watching the older children and performing household chores so that the mother can give total care to her newborn. Implicit in this natural family tradition is the understanding that the mother is “owed” care because she is giving care to a much loved, highly vulnerable newborn. Her first priority is to give the best care possible to her beloved charge.

Over the past few years, I have been thinking about how to ignite a wholesale shift in thinking about care across society. Kittay’s ideas about doulia and inevitable, nested dependencies provide a great jumping off point for a new conception of care for the caregiver.

But where do these ideas lead, practically speaking? Well, I believe that employers should have a two-pronged corporate social responsibility program – family care and community care. Assuming that some employees have caregiving responsibilities that are sometimes onerous, causing them to claim sick days or leave to look after a critically ill spouse, elderly parent or child with a disability, the company could and should support its own. The second prong of the corporate social responsibility strategy would be a focus on the needs of the greater community. Another idea would be to have local volunteer bureaus match families with volunteers. My local volunteer bureau matches only willing helpers with agencies, never with needy private citizens.

Kittay is right. We don’t blink an eye when people rush to help with household chores of the new mother. We instinctively know that she needs to have her full attention on caregiving and the duty of others is support that role. So why are older caregivers any different? They aren’t. And if long-term caregivers don’t receive long-term support, they and their charges will suffer. Doulia is a concept worth thinking about and acting upon this giving season and all year round.

[i] Eva Feder Kittay, “When Caring Is Just and Justice Is Caring: Justice and Mental Retardation,” Public Culture, 13.3 (2001): 565.

[ii] Kittay, Love’s Labor, p. 132.

What Every Caregiver Should Know About Clinical Trials for Alzheimer's and Parkinson's

2025-08-06T18:44:00.000-04:00

What Every Caregiver Should Know About Clinical Trials for Alzheimer’s and Parkinson’s

Many regular visitors here in the Caregivers' Living Room will know that I am a passionate supporter of health research, both as a participant and as an engaged caregiver on research teams. I am delighted to host this guest post by Anthony Ciabarra, MD, PhD, a distinguished neurologist and researcher (see his bio below). Here Dr. Ciabarra unpacks all the benefits of participating in Alzheimer's or Parkinson's clinical trials (but the benefits are the same no matter your diagnosis or disease group). - Donna

Photo by CDC on Unsplash

When it comes to Alzheimer's clinical trials, many caregivers feel overwhelmed, unsure, or simply unaware of what’s involved. But for families navigating the realities of Alzheimer’s or Parkinson’s, understanding these trials can be life-changing. They represent more than just research—they offer hope, access to cutting-edge treatments, and a chance to make a difference.

Let’s break it all down.

Understanding What Clinical Trials Mean

Clinical trials are research studies involving people. They’re how new drugs and therapies are tested for safety and effectiveness before becoming public. For neurological diseases like Alzheimer’s and Parkinson’s, this is a critical step in advancing treatment.

There are four phases in clinical trials. Each phase digs deeper, starting with small groups of participants and scaling up only if the treatment shows promise. By the time a drug reaches the final phase, it’s undergone years of testing.

Many trials focus on slowing cognitive decline or reducing symptoms like memory loss, confusion, or tremors. Others test preventive strategies for those at high risk.

Alzheimer's clinical trials are reviewed carefully by independent committees and regulatory bodies. This ensures both patient safety and scientific integrity.

Why Caregivers Should Pay Attention

My aunt Carla was diagnosed with early-onset Alzheimer’s at 58. She was sharp, witty, and the kind of person who’d solve a crossword in pen. Watching her slip into forgetfulness was gut-wrenching. We tried medications, therapy, even diet changes—but nothing halted the decline. Then we heard about a local trial testing a new protein-blocking drug. It wasn’t a cure, but it slowed her progression just enough to give us more time. She even remembered my daughter’s birthday that year.

As a caregiver, participating in a study gave us purpose and support. It introduced us to doctors who listened, and fellow families facing the same rollercoaster. More than anything, it made Carla feel like she was contributing—like she mattered.

Who Qualifies for These Trials?

Not everyone can sign up. Each study has inclusion and exclusion criteria. This could be based on age, disease stage, genetics, or past medical history. For example, some trials accept patients only with mild cognitive impairment, while others seek those with moderate symptoms. Others look for people carrying specific biomarkers or genetic traits.

A medical screening is always part of the process. It ensures that participants won’t be harmed and that the data collected is scientifically valid.

The Hidden Benefits of Participating

One major advantage of joining a trial is early access to treatments not yet on the market. Some participants get therapies that won’t be publicly available for years.

Even in placebo-controlled studies, all patients receive excellent care and close monitoring. Regular check-ins, lab work, and cognitive testing become part of the routine. This level of attention can help catch other health issues early. It also gives families a clear picture of disease progression and response to treatment.

Addressing the Fear Factor

Many caregivers worry about risks. What if the treatment makes things worse? What if it doesn’t work at all?

These concerns are valid. But every clinical trial is designed with safety as a top priority. Before any patient joins, researchers explain potential side effects, risks, and expectations.

Participation is always voluntary, and patients can withdraw at any time—no questions asked.

In Carla’s case, the trial nurse sat with us for two hours, going over everything. We didn’t feel pressured. We felt informed. That made all the difference.

Alzheimer’s vs. Parkinson’s: Trial Differences

While Alzheimer’s trials often focus on memory, thinking, and beta-amyloid buildup, Parkinson’s trials may zero in on motor function, tremors, or dopamine levels. Both diseases involve neurodegeneration but affect different systems and symptoms. Some research overlaps, especially in cases of mixed dementia or late-stage progression.

There are also trials exploring how inflammation, sleep, or gut health impact both conditions. Being aware of these nuances helps caregivers advocate better and ask smarter questions when researching options.

How to Find the Right Trial

Start by asking your neurologist or primary care physician. They often know about local or national studies and can provide referrals. You can also search online databases like ClinicalTrials.gov (USA only). Filter by location, disease stage, or treatment type.

Another great resource is local hospitals affiliated with research universities. They typically have dedicated departments for neurodegenerative diseases.

Before enrolling, make sure to ask:

● Is travel required?

● Will there be out-of-pocket costs?

● What happens after the study ends?

Stories That Inspire

Maya, a 62-year-old retired teacher from Houston, joined a Parkinson’s trial involving deep brain stimulation. She was skeptical at first, but three months in, she was writing on a chalkboard again.

James, a caregiver in Chicago, enrolled his father in a nutritional therapy trial for Alzheimer’s. Though results were modest, the structured routine gave his dad stability and peace.

These aren’t miracle cures. But they are reminders that progress is possible—and often, participation itself becomes empowering.

Key Takeaways for Caregivers

If your loved one has Alzheimer’s or Parkinson’s, clinical trials can be a real opportunity. They offer access to new science, expert care, and a sense of purpose.

While there are risks, they’re well-managed and clearly communicated. Do your homework. Talk with doctors. Read the fine print. And most importantly—trust your gut.

For some families, these trials become a turning point. Not because they reverse time, but because they give it more meaning.

Anthony Ciabarra, M.D., Ph.D. has been practicing neurology and supervising neurology clinical trails in Fullerton for over 20 years. As a graduate of Yale University School of Medicine, he participated in the Medical Scientist Training Program receiving an M.D. degree and a Ph.D. degree in the Department of Pharmacology. Dr. Ciabarra has participated in the development of a number of breakthrough treatments including new treatments for Alzheimer's disease, Parkinson's disease, migraine headache, and other neurological conditions.

The AARP Caregiver Answer Book: My New BFF

2025-07-30T14:48:00.005-04:00

There are few books on the market as practical and helpful as The AARP Caregiver Answer Book by Drs. Barry Jacobs and Julie Mayer. Barry and Julia are husband and wife and they are psychologists who have their own deep personal history of family caregiving.

Look Inside:

The book is structured using questions that caregivers typically ask, together with answers in the form of narrative experiences that resonated strongly with me. Questions are organised into chapter themes such as Caring for a Parent, Caring for a Spouse, Communicating with Dignity, Day-to-Day Caregiving at Home and Caregiving in a Facility or From a Distance, just to name a few. The authors never skirt around the real suffering that many caregivers endure. But they are realistic about the rewards, too. And they generously share their own hard-earned wisdom:
"We reflected on the multitude of experiences we'd had and how they had changed us. And they had changed us in ways that weren't all obvious initially. We also felt exhausted. And we felt confident in ways that we hadn't before."

The authentic compassion of the authors shines through in deeply comforting phrases such as, "We are all human, and we've done our best given our circumstances." I found the hundreds of caregiving situations that are introduced in the form of questions to be realistic and often very painful. But Drs. Jacobs and Mayer answer with a deep understanding of the complex drama that plays out in caregiving families, often when the very life of a loved one is hanging in the balance.

"Most caregivers say they think they will look back on it as difficult but worthwhile. Ultimately that does tend to be true. You don't come away from caregiving unscathed, but you almost always come away with more meaning in your life and a sense that you did a good thing or at least the right thing."

This is a wonderful book that I highly recommend to anyone in a caring role.

To hear more from Dr. Barry Jacobs, listen to my Caregiving Essentials conversation with him about sibling conflict here. Or, listen to Stephanie Muskat's Caregiver's Compass conversation with Barry and Julia here.

And finally, I'm grateful to Feedspot for highlighting The Caregivers' Living Room in their Top 60 Canadian Home Care Blogs!

Governments Must Ensure Caregivers Have Support

2025-04-02T09:43:00.003-04:00

Happy National Caregiver Day in Canada yesterday! Let's make supporting caregivers a key public policy issue in our current federal election and link it to economic recovery from economic challenges! We need CARE SECURITY in our country and that comes from the natural caring in families. We can't keep it up without support. I co-authored the article below with Dr. Heather Aldersey, Associate Professor at Queen's University in Kingston, Ontario.

Governments must ensure caregivers have support to keep doing their vital work

People with disabilities and their families often have an even greater need for support over time, especially if a disability is progressive or family members experience their own health challenges. (Shutterstock)

Heather Aldersey, Queen's University, Ontario

April 1 marks National Caregivers Day in Canada. The day is meant to recognize the carers who provide vital care and support to those in need.

We all need care and support to navigate challenges in life. Help can come from formal support (paid professionals and government programs), and from natural support networks (family, friends and neighbours).

The Canadian Centre for Caregiving Excellence (CCCE), a program of the Azrieli Foundation, released its National Caregiving Strategy on Feb. 18, stating that caregiving is the next frontier in Canadian public policy. As the CCCE’s executive director, Liv Mendelsohn, said: “Millions of Canadians are navigating caregiving with minimal support, and it’s simply unacceptable.”

This article’s co-author, Donna Thomson, is a caregiver, author and educator. She is the mother of two grown children, one who has severe cerebral palsy and medical complexity. Thomson also helped care for her mother who lived with dementia until she passed away in the summer of 2018 at the age of 96.

Family caregivers often need support themselves in order to keep working both inside and outside of the home. Parents of adult children with developmental disabilities in Canada are hardly ever asked: “What do you do for your son or daughter that paid helpers cannot?” Even less often, that question might be followed by: “Wow, that’s a lot. Would you like some support to continue doing those things?”

With a federal election on the horizon, Canadians can call on their governments to improve support for caregivers. (Shutterstock)

Importance of natural caregivers

Our research recognizes that both formal and informal supports are essential in enabling people with disabilities and their families to live their best lives. We want to understand how individuals, families, organizations and communities can best come together to get people with disabilities and their families the types of supports they need and want, when they need and want them.

Over the course of our research, we conducted a document and literature review, alongside interviews and focus groups with people with disabilities, family members and formal disability support providers. We identified that family or friend caregivers often support a person they care for with a sense of love and commitment to a depth that is rare in formal support relationships.

Unbound by professional obligations, safety standards or employer/funder priorities, these natural supporters can often be vocal advocates for the best interests of those they are supporting.

However, sometimes finding and sustaining natural support in the community doesn’t come easily for people with disabilities and their families. In those instances, organizations and facilitators (formal supports), can help broker the creation and maintenance of natural support networks.

Community organizations offering formal supports and supporting the creation and maintenance of natural supports can sometimes be beholden to funder obligations. This can limit the flexibility and adaptability required to best meet the needs of those they support.

Additionally, organizations are often constrained by safety considerations, aversion to risk or the challenges posed by overly bureaucratic systems. Sometimes, this can mean the support provided to a person or family does not directly respond to what the individual or family needs. Even more frustrating is that waiting times can be so long to access formal supports that identified needs or priorities change in the meantime.

Sometimes, finding and sustaining natural support in the community doesn’t come easily for people with disabilities and their families. (Shutterstock)

CCCE’s caregiving strategy

The CCCE strategy is a recognition that care work makes all other work possible. It echoes our research findings that both paid and unpaid caregivers need financial support as well as targeted programs and services.

The strategy calls upon the Canadian government to make caregiving a priority while ensuring a sustainable care provider workforce.

Supports are also a provincial issue. For example, in Ontario, the Ministry for Children, Community and Social Services has published a framework that offers a long-term vision for transforming developmental services so people with developmental disabilities fully participate in their communities and are supported to live their lives.

Care and support can also be a gender issue, given that in Canada and around the world the majority of both formal and informal support is being provided by women and girls.

Missing perspectives

Our research also highlighted a notable gap in the research landscape. Research on natural support in Canada is often not explicit about or does not incorporate understandings of natural support from the perspectives of Indigenous, Black, rural, LGBTQ+ and other marginalized groups.

People belonging to these groups may have their own needs and experiences that relate to navigating natural and formal support systems in Canada. Future-focused research agendas into natural supports, such as those proposed in the CCCE strategy’s recommendations, must intentionally seek to understand support and care experiences from these perspectives.

At the Global Disability Summit taking place this week in Berlin from April 2-3, we will join voices from around the world to call on national leaders and decision-makers to ensure disability policies translate into tangible actions and inclusive practices.

Our research shows the deep, important impact of federal and provincial policy and funding both for formal and natural supports to flourish. With a federal election on the horizon, Canadians can call on their governments to improve support for caregivers, ensure support systems are in place and flexible enough to respond to individual and family needs, and enable natural support networks to flourish.

This is important, because the care we give to each other, regardless of age or ability, is what will sustain us as families.

This article was co-authored by Donna Thomson, a caregiver, author and educator.

Heather Aldersey, Professor and Canada Research Chair (Disability Inclusive Development), Queen's University, Ontario

This article is republished from The Conversation under a Creative Commons license. Read the original article.

LONG-TERM CARE: Will 2025 be the year we fix it?

2025-02-03T07:15:00.002-05:00

This is a wonderful opinion piece from Ottawa (Canada) caregiver and writer, Lise Cloutier-Steele. It's a call to action to reform long term care everywhere for the good of those we love and for ourselves, as we age. Thank you, Lise!

Photo by Dominik Lange on Unsplash

The next Ontario government must stop repeating the current mistake of funding new long-term care homes built by companies with bad records.

Lise Cloutier-Steele

I believe December 2024 took the prize for the most demoralizing reports of neglect, abuse and reprisal in the Ontario long-term care sector. All made me wonder: What is it going to take to sort it all out?

Some argue that resolving this mess would require a massive investment of money the government doesn’t have. The reality, though, is that millions of taxpayer dollars have been awarded to private for-profit long-term care corporations, without any evidence of a corresponding improvement in the quality of care.

It may be commendable to provide funding for the construction of new, more modern homes to resolve capacity issues, but it’s far from a complete solution. If the level of care within these new homes is no better than what we’ve seen in the older facilities, are we really making progress?

One example of misplaced taxpayer dollars is Extendicare, a Canadian corporation that offers housing and care to seniors. Extendicare has been one of the main beneficiaries of Ontario government funding in recent years, and in May of 2024, the Minister of Long-Term Care and Extendicare executives proudly announced the opening of the newly built Extendicare Countryside care home in Sudbury.

The new facility was described as a modernized and comfortable home that would provide residents with an improved quality of life. The positive vibes didn’t last long, however. In the months following the opening, numerous complaints were made by residents and family members about the substandard level of care offered at the facility.

These concerns were supported by multiple citations for non-compliance issued to the home from September to December 2024, by the Inspection Branch of the Ontario Ministry of Long-Term Care, and on December 16, less than seven months after the facility opened its doors, Brad Robinson, Director of the Inspection Branch, issued a ‘cease admissions order’ to the home. You can read the January 2, 2025, investigative report by Len Gillis of Sudbury.com here: https://www.sudbury.com/local-news/angry-family-members-concerned-for-loved-ones-at-extendicare-countryside-10018608

Earlier in the year, on May 2, Mr. Robinson also suspended new admissions to the St. Joseph’s at Fleming long-term care facility in Peterborough. Robinson’s order was based on his belief that ‘there is a risk of harm to the health and well-being of residents of the home or others who might be admitted’, the same statement he made recently about Extendicare Countryside of Sudbury.

Beware of retaliation

Caregivers who have the courage to speak out about the substandard care of their loved ones should be especially cautious. If managers of a facility feel threatened by their complaints, they may issue a visitation ban under the authority of the Ontario Trespass to Property Act (TPA), or file a workplace harassment complaint against a caregiver while the facility conducts its own internal investigation, which may not include any input from the caregiver facing accusations from staff. The latter process can extend the visitation ban for a longer period.

Both retaliatory measures can have a devastating effect on a family. Such was the case for Diane Tamblyn of Peterborough, who was banned in May 2022 from visiting her 87-year-old father, a resident of the St. Joseph’s at Fleming facility.

Tamblyn was first issued a trespass notice she believes the home imposed because she complained about the care her father was receiving, and she was further burdened with restrictive visits by a workplace harassment complaint filed against her. Given that St. Joseph’s at Fleming was issued a ‘cease admissions order by the Ministry of Long-Term Care in May 2024, Diane Tamblyn likely had good reason to complain when she did. Her story is here: https://www.kawartha411.ca/2022/03/24/peterborough-woman-says-long-term-care-home-is-restricting-her-visits-with-her-father/

Despite the Ministry of Long-Term Care’s actions to help resolve issues at the St. Joseph’s at Fleming facility, a report in the Peterborough Examiner of January 17, 2025, indicates that the situation has not improved and the province has issued a call for new management.

For over a year, Paul Ziman of Windsor was banned from visiting his mother at the Village at St. Clair facility after he expressed concerns about her care. According to the December 3 CBC Windsor report, Mr. Ziman contacted the Long-Term Care Action Line, the Patient Ombudsman, the Ministry of Long-Term Care and a number of lawyers, and he had yet to get the help he needed to get the ban lifted. You can read the complete report here: https://www.cbc.ca/news/canada/windsor/windsor-man-barred-from-ltc-home-pushes-back-1.7396178

There have been new developments in Mr. Ziman’s story. He broke the ban imposed on him by the Village at St. Clair facility to visit his mother for a few days over the Christmas holiday. On Boxing Day, police were called to the home, and because Ziman failed to leave the building when he was directed to do so, he was removed in handcuffs, released outside the home, and issued a $65 fine under the Ontario Trespass to Property Act (Act). You can read the complete update here:
https://www.cbc.ca/news/canada/windsor/police-handcuff-and-fine-son-for-visiting-mom-in-ltc-home-after-breaking-unlawful-ban-1.7431805

“What I find most disturbing is this notion that nobody is ever supposed to complain about anything, and if they do, then no matter how valid the complaint, somehow they are harassing employees. This is too common a theme with government departments, hospitals, police forces and nursing homes. Where people have the option to take their business elsewhere, valid complaints are taken more seriously.”

– BRUCE F. SIMPSON, SENIOR PARTNER

BARNES, SAMMON, LLP, OTTAWA, ONTARIO

Lastly, and closer to home, the Ottawa Citizen published a report on December 12 regarding the Villa Marconi care home on Baseline Road, where staff said they had to wash and dry residents using pillow cases, torn bedding and paper towels. Although this facility might have been the pride of our Italian community at one point, its current conditions tell another story. Equally concerning was the fact that some of the staffers and advocates who provided comments preferred to do it anonymously. Read the article here: https://ottawacitizen.com/news/local-news/ottawa-long-term-care-home-hygiene-villa-marconi

What can be done?

It might sound simplistic, but I believe there needs to be a shift to common sense.

For instance, if remedial measures intended to address non-compliance issues fail to bring about improvements, there is no point in continuing with them.

The Ministry of Long-Term Care should enforce its ‘Fixing Long-Term Care Act, 2021, c.39, Schedule 1’, to protect whistleblowers from retaliation for reporting care issues in Ontario facilities. All forms of retaliatory actions by facilities against caregivers who complain should be abolished altogether, because the biggest losers in these disputes are the residents themselves, and they’re the ones who need the most protection.

More severe penalties, such as significant fines, should be imposed for non-compliant facilities.

By now, it should be clear that awarding millions of dollars to nursing home chains with some of the worst records serves no purpose other than to encourage a continuation of the same unacceptable practices.

Staff shortages and high levels of absenteeism by overburdened personal support workers and nurses continue to be major obstacles to improvement. Better working conditions, higher salaries and improved benefits would help persuade young people to consider this line of work as a viable career option.

No one wants to spend their later years in an institution, and if improvements could be made to home care, it might be a better option for many in need of assistance. It would allow elders to age in dignity in the privacy of their own home, for as long as they can. An added benefit of investing in more adequate and accessible home care is that it could discourage long-term care facilities from admitting more residents than they can realistically care for.

Finally, we should never underestimate the good that just one caregiver can do, and the rippling effect it can have on others. But, if you are a caregiver tired of trying to make improvements to long-term care all on your own, you may want to consider lending your support to established organizations that share your objectives, and have made great strides in advocating for residents in care and their caregivers.

Examples of these are: Concerned Friends of Ontario Citizens in Care Facilities (CF), www.concernedfriends.ca, Email: info@concernedfriends.ca; Advocacy Centre for the Elderly (ACE), www.acelaw.ca; and the Canadian Centre for Caregiving Excellence (CCCE), www.canadiancaregiving.org, Email: info@canadiancaregiving.org.

Lise Cloutier-Steele is an Ottawa writer and the author of There’s No Place Like Home: A guide to help caregivers manage the long-term care experience, available from www.ottawacaregiver.com.

FAST CAR is a Song About Caregiving

2025-01-18T16:39:00.006-05:00

Driving home in a snowstorm today, the song Fast Car came on the radio. I can sing every word because I've loved it since Tracy Chapman first released it in 1988. But maybe I had never listened carefully to the words before. This is a song about craving escape from a prison of caregiving and poverty. It's also about feeling helpless and invisible. And yet there is hope in the words, too.

You got a fast carAnd I want a ticket to anywhereMaybe we make a dealMaybe together we can get somewhere

Any place is betterStarting from zero, got nothing to loseMaybe we'll make somethingMe, myself, I got nothing to prove

You got a fast carAnd I got a plan to get us out of hereBeen working at the convenience storeManaged to save just a little bit of money

Won't have to drive too farJust across the border and into the cityAnd you and I can both get jobsFinally see what it means to be living

See, my old man's got a problemHe lived with the bottle, that's the way it isSaid his body's too old for workingHis body's too young to look like his

So, Mama went off and left himShe wanted more from life than he could giveI said, "Somebody's got to take care of him"So, I quit school and that's what I did

You got a fast carIs it fast enough so we could fly away?Still gotta make a decisionLeave tonight, or live and die this way

So, I remember when we were driving, driving in your carSpeed so fast, I felt like I was drunkCity lights laid out before usAnd your arm felt nice wrapped around my shoulderAnd I, I had a feeling that I belongedI, I had a feeling I could be someone, be someone, be someone

You got a fast carWe go cruising, entertain ourselvesYou still ain't got a jobSo I work in the market as a checkout girl

I know things will get betterYou'll find work and I'll get promotedAnd we'll move out of the shelterBuy a bigger house, live in the suburbs

So, I remember when we were driving, driving in your carSpeed so fast, I felt like I was drunkCity lights lay out before usAnd your arm felt nice wrapped around my shoulderAnd I, I had a feeling that I belongedI, I had a feeling I could be someone, be someone, be someone

You got a fast carI got a job that pays all our billsYou stay out drinking late at the barSee more of your friends than you do of your kids

I'd always hoped for betterThought maybe together you and me'd find itI got no plans, I ain't going nowhereTake your fast car and keep on driving

You got a fast carIs it fast enough, so we could fly away?You still gotta make a decisionLeave tonight, or live and die this way

Here is the original music video from 1988. It's a song that surely speaks to the hearts of caregivers, young and old, including those who decided to stay and those who chose to leave.

Confessions of an Ambivalent Caregiver: I Love This New Memoir

2024-09-20T16:31:00.048-04:00

One of the privileges of writing a blog for caregivers is that occasionally, someone sends me a book to review. (This makes me very happy.) Today I want to tell you about a wonderful new memoir I received called True Confessions of an Ambivalent Caregiver by Cindy Eastman. Eastman is an award-winning author whose first book, Flip-Flops After 50: And Other Thoughts On Aging I Remembered To Write Down, was published in 2014. She has essays in several other anthologies and in online magazines and writes a weekly essay called Silver Linings. Cindy lives with her husband, Angelo, in Watertown, Connecticut.

This book tells the story of Cindy and Angelo's caregiving journey with Cindy's parents, but especially her father. I connected immediately with the author's brutal and sometimes delightful coupling of frustration with gratitude and love with annoyance. I could relate strongly to her sense of "what the hell just happened to our life?" when "Dad" moved into the author's home. This is a memoir that will offer deep comfort to caregivers who believe they are alone in feeling unspeakably complicated emotions as they move through helping a parent navigate the last stage of his or her life.

Here is a small but delicious taste of True Confessions of An Ambivalent Caregiver:

What really happened was this: Dad didn't come live with us, blending in with our schedules, our commitments, and our social arrangements. We now live with him - in our home. The way Angelo and I lived our lives before my dad moved in now must work around an entirely different schedule and a new level of needs.

It's a subtle but significant distinction. Discovering this hasn't made me regret my decision; in fact, it helps now that I have a clearer understanding about what we've gotten ourselves into. For a while, I thought I could continue working on my book, run my writing retreats, pick up a couple of classes, and still work part-time with my husband in our parenting program. The half dozen or so other commitments I had inked in to my calendar - meetings mostly, from the casual coffee with a friend to the numerous town committees on which I serve - would have to be turned back into pencil. Or sometimes, canceled.

We were empty nesters for many years before my dad moved in. As a result, Angelo and I both created a flexible schedule with abundant time to share. Our home was big enough to modify, and we had a desire to help. It seems like an ideal situation. We felt very grown up and pragmatic about making this decision. We knew we couldn't anticipate everything, but we felt whatever did come up, we could handle it. That seemed reasonable.

What I learned, however, was sure, we can handle things that come up, but effectively handling the events that pop up on a consistent basis while also trying to maintain a demeanor of calm and competence is draining. Even anticipated situations required a greater level of energy and patience than I've ever had to draw on, even more so than when I was a single parent twenty-five years ago. Decisions we made that seemed like a good idea at the time ended up being pretty bad decisions. For example, sending my husband off to Italy for three weeks seemed like a good way to stay committed to our plan of visiting his hometown for at least a month each year; a plan we had only commenced the year before. (He ended up staying since we knew we couldn't turn a bad decision into a good one by simply reversing it.) So, we're learning as we go. The biggest thing I learned is that even though the whole family was involved in the decision to bring my dad into our home, the caretaking responsibility largely rests on one person. In our case, it's me.

If you care for a parent and feel like an "ambivalent caregiver", buy this book now. It's the validation that we all need to feel less alone - and it's a great read. Available at all major booksellers in the USA and Canada.

New Resources for Working Caregivers and Their Employers!

2024-06-27T10:36:00.003-04:00

Did you know that more than 3.5 million workers in Canada are also family caregivers? And over half of those are women who provide more than 20 hours per week in unpaid care at home. That's like having a whole second job!

This year, I had the pleasure of co-developing a McMaster Continuing Education free online course for employers titled Creating Caregiver-Friendly Workplaces. The course is primarily for human resources managers who seek to attract and retain valued employees who may otherwise have to leave employment due to their care responsibilities. But working caregivers are welcome to take advantage of this free learning resource too and all students receive a McMaster University micro-credential upon successful completion. Check it out!

Dr. Allison Williams is a McMaster researcher whose investigations centre on working caregivers. Her website is another goldmine of resources including infographics, quizzes, guides, checklists and even a National Standard for Helping Worker Carers in Your Organization. This website is your go-to for user-friendly tools to embed in your strategic plan to create your carer-friendly workplace.

The third resource I want to tell you about is a new book for working caregivers and their employers, Working Caregivers: The Invisible Employees by Selma Archer and Zack Demopoulos. This is a wonderful guide full of real life work-care balance challenges and sound strategies to address them. This book is easy to read and offers managers and caregiver employees alike the inspiration, confidence and toolkit to engineer real change in the workplace.

I highly recommend all of these resources for anyone seeking to alleviate personal working caregiver stress or those seeking to offer support through accommodations in the workplace. Our economy needs workers who are not stressed, exhausted and liable to quit due to burnout. There IS another way we can care for the aged, ill or disabled in our society and support caregivers to remain in the workforce. As our population ages, this culture shift for workplaces is not a luxury; it is essential.

PLANNING FOR THE LONG TERM

2024-04-16T16:14:00.003-04:00

I am delighted to host this guest post by Ottawa caregiver and author, Lise Cloutier-Steele. Lise is the author of There’s No Place Like Home: A guide to help caregivers manage the long-term care experience and her website can be found at www.ottawacaregiver.com.

I am 71 years old, and like many seniors in my age group, I sometimes wonder what my exit from life will look like. Despite my daily efforts to eat well, exercise and maintain an active lifestyle, anything could happen. After all, illness does not discriminate.

Recently, I watched a beautiful movie starring James Cromwell and Geneviève Bujold, whose outstanding performances moved me to tears a few times. Still Mine, was released in 2012; it was filmed in Ontario and New Brunswick, and it’s the true story of a farmer caregiving for his wife when she begins to suffer from dementia. The husband had a great plan to build a smaller home to make everyday living easier for him and his wife, and despite the many problems he faced with his project, it all worked out in the end. Still Mine is currently available on Crave TV, and you can watch the official trailer HERE.

I couldn’t help but think that this is how I hope things will work out for my husband and me, and there’s no reason why we couldn’t enjoy a similar happy outcome, one that would allow us to retain our independence and dignity right up to the end. But for that to happen, planning for any eventuality is key.

There have been times when I’ve told my husband that if he became ill, and couldn’t care for himself, a long-term care facility would be out of the question. I always add: “That would be over my dead body!”. Of course, that assumes I would be available and able to coordinate home care for him, and advocate on his behalf. If that were not the case, health care system authorities would likely have him committed to a care facility in no time.

If I became widowed, and could no longer care for myself, the same could happen to me. I know I would be devastated if I ended up in a facility where basic care and safety could not be guaranteed, as my late father was when he realized there would be no turning back to the life he once knew. It didn’t matter how many times I explained to him that Mom’s cancer left us with no other choice but institutionalized care for him. That just made him cry even more, and although his tears made me feel guilty and sad, I couldn’t blame him. Needless to say, knowing what I know now about long-term care, he had good reason to cry.

It's been nearly 14 years since my father passed away, but the sad reality is that there remains a need for major improvements to long-term care programs. On September 7, 2023, Ontario Ombudsman Paul Dubé called for an overhaul of the government’s inspection system after his latest investigation found it was completely overwhelmed during the first wave of COVID-19. However valid and urgent the Ombudsman’s recommendations may be, their implementation will take time. You can read the Ombudsman’s complete report HERE.

In his March 2023 annual report, Ontario Patient Ombudsman Craig Thompson had warnings of his own. He concluded that the COVID-19 pandemic is a factor that continues to expose and aggravate long-standing stresses on our health care system. Highlights of the Patient Ombudsman’s report are available HERE.

Case in point: a few months later in November 2023, the Ottawa Citizen reported that there had been 7,157 confirmed COVID-19 cases among residents and staff of Ontario long-term care facilities since late August 2023. Of those, 181 residents were hospitalized and 106 died. It was not a big surprise then, to learn from this report that as of November 14, 2023, there were 105 ongoing outbreaks in long-term care homes across the province. Since then, I have come across dozens more recent media reports of persistent issues with long-term care, which naturally lead to greater cause for concern and worries about the future.

The documentary film Stolen Time, recently released on March 22, 2024, is yet another compelling call for justice for residents in care. The film follows elder rights lawyer Melissa Miller as she takes on the corporate for-profit/nursing-home industry, which is notorious for its lack of transparency and accountability. The trailer for the film can be viewed here on the website for the National Film Board of Canada or on the website for the film company Intuitive Pictures. The film should prompt all Canadian seniors to do what they can to push the political will to effect change in long-term care once and for all.

An important first step, as suggested by Ms. Miller in a recent television interview, would be to take the profit out of care. No one wants to spend their later years in an institution, and so more than ever, seniors need a plan for their golden years that would allow them to age in place with dignity. It could include a variety of options such as a granny suite, co-habitation, provisions for in-home care if needed, or a retirement residence where assisted-living services are available.

My husband and I live in a senior community, where folks tend to look out for one another, and this bodes well for us to remain independent. Should one of us be left behind, neighbours would always provide a human connection. I guess this part of our plan to age in place has worked out well. It's the possibility of a non-optional long-term care outcome for either one of us that I continue to struggle with.

Yet, it’s not like I wouldn’t know what to do, having experienced caregiving for my father while he was in a long-term care facility for a period of over three years. I think I would know instinctively what would, or wouldn’t work, for myself or my husband.

In the meantime, home is home, where we plan to make the best of each day going forward for as long as we possibly can. If a health challenge becomes part of our life together, then we would face it with a strategy that has worked well for us up until now: common sense with a mix of love, kindness and compassion.

Photo of Lise Cloutier-Steele by Wayne Cuddington of the Ottawa Citizen

SUPPORT FOR WORKING CAREGIVERS? NOW THERE'S A WAY - SPREAD THE WORD!

2024-04-04T10:37:00.001-04:00

Trying to balance work while caregiving for a family member or friend can feel frantic and impossible. It's exhausting to prop up a fiction that we "should" be able to manage everything, all at once, by ourselves. But now, there is hope that workplaces everywhere will embed caregiver support that will draw and retain talented employees who also have care responsibilities. Both the evidence and the employer training are here!

Over the past year or so, I have been working with a team at McMaster University to develop a new, free online course for employers who seek to attract and retain workers who have care responsibilities at home. And now, CREATING CAREGIVER-FRIENDLY WORKPLACES is open for registration! Tell your friends, your family members and everyone who has a stake in making workplaces caregiver-friendly!

The case for making it easier for employees to balance work and care isn't only about caregiver wellbeing (although that's important too, of course). There is a sound economic argument for businesses to engineer this culture shift:

Over 60% of caregiver-employees are caring for their parents, or their parents-in-law
41.5% of caregiver-employees are between the ages of 45-65, representing the most experienced in the labour market
6.2% of caregivers are sandwiched between child rearing and caregiving, in addition to their paid work responsibilities.

So what can employers (Human Resources managers and other business leaders) learn in this course? They will discover a step-by-step approach to creating a system of flexible supports that meet the needs of their caregiver employees. For example, how to create:

Support services, such as counselling, support groups and skills training
Flexible work arrangements, such as: working from home and job sharing
Strategies which support employees, such as: culture change initiatives and educational workshops
Paid or unpaid leave, such as: sick days/leave and family medical/compassionate care leave
Financial and other forms of assistance, such as: employee assistance plans (EAPs) and insurance coverage

Depending on the size of the business, employers can put their course learning into implementing a Canadian Standard for Caregiving Workplaces (see the links below), or they can pick and choose whatever strategies work for their individual circumstances. The point is, both workplaces and families are healthier and more sustainable with caregiver support.

To access the Standard Carer-Inclusive and Accommodating Organizations, follow this link: CSA B701:17 (R2021). From the link choose View Access. You will be required to register to view the Standard, however, the login is free to viewers in Canada. Once you have created an account, you will be allowed to download the Standard.

To access the Helping worker-carers in your organization Handbook (CSA B701HB-18) follow this link: CSA B701HB-18. From the link, follow the same instructions as provided for the Standard.

The time for a change in the way that we work and live is now. Let's start by encouraging all managers everywhere to consider how they can shift workplace culture to accommodate the real, caring lives of employees. A great place to start is by learning how in this free course: Creating Caregiver-Friendly Workplaces AND participants receive a McMaster Continuing Education microcredential. It's a win/win for all.

Resources: This course is based on the research of Dr. Allison Williams at McMaster University. Her terrific webpage of resources for both employers and caregiver employees can be found HERE.

Couples as Caregivers

2024-02-01T11:54:00.000-05:00

February 14th is of course Valentine's Day and this year, I am planning a very special Caregiving Essentials webinar with... my husband! Jim and I have been married for 47 years and for most of those, we have been caregivers. As a couple, we've cared for our mothers, my step-father and of course our son Nicholas. I've been reflecting lately on what it takes to give care and maintain a loving, spousal relationship. There is no denying, it's a challenge.

There's something about caregiving that takes the "red" out of "hot" in the marital bed. Maybe it's the fact that we are constantly watching for the needs of another. Or perhaps we are just too tired. You can't drink from an empty cup and you cannot experience flickers of passion if you feel like a wet dishcloth.

What happens when the needs of that vulnerable charge never really diminish, they increase day by day? We keep our caregiver eye firmly fixed on our loved one... we keep them safe. So, what does it take to keep the romantic fires alight? I would say that it requires a decision - a decision to look away from your care recipient for a few minutes and look at your partner. It's difficult, especially when looking only at your loved one becomes a habit - a habit that eventually feels like necessary breathing.

And TIME is the enemy here. Most caregivers have no respite, especially if their loved one is complex. One couple I know who run a home hospital for their 42 year old son have not been out to dinner since 1997. They cannot trust others to look after their precious son - his care would tax even a well-staffed, state of the art medical facility.

Some couples will have to muster lots of determination to make that decision to remain close. Many will have to create complicated puzzles for respite plans, however brief. But once the decision is made to have some physical contact with a partner, the decision is there - it becomes real. Hands will be held, necks will be stroked, hugs have a chance of leading to something closer.

It takes courage to turn away from a fragile elder, medically complex child or ill spouse, even for a minute. But a little planning to ensure the best safety measures possible for a break of fifteen minutes or a weekend away can make a caregiver and his or her partner into a couple.

Why 2024 Will Be the Year of the Caregiver

2023-12-30T13:09:00.006-05:00

My New Year's resolution is to work hard at the Canadian Centre for Caregiving Excellence to get a national strategy for caregivers - ALL caregivers, patients and families.

The third day of the November Canadian Caregiving Summit was all about how we can achieve real change here and worldwide for you, me and the millions of caregivers who need help now. We wanted to know what had been achieved in other countries and how they did it.

First off, we heard from Allison Barkoff, acting Assistant Secretary for Aging and Principal Deputy Administrator, Administration for Community Living at U.S. Department of Health and Human Services. She declared that her mission was to ensure every person can live and participate in their community, regardless of age or ability. Not just people with Alzheimer's or childhood disability, EVERYONE. Caregivers included. Allison described a framework for thinking about care infrastructure: that supporting it is a matter of civil and human rights. And that care infrastructure consists of paid care AND families. We cannot support one without the other and expect positive change. A key aspect of the federal "wins" for caregivers that Allison described was in combining issues of aging with disability. Another key element was political will. An executive order by President Joe Biden created the opportunity for a big tent movement culminating in the RAISE Family Caregivers Act. "We must make the business case to support caregivers", Ms. Barkoff said, "and then we must act with radical incrementalism." In other words, be visionary, determined, collaborative, strategic and know that small steps on a single path can lead to new territory.

Greg Link of the US Department for Community Living (Director, Caregiver Support) told us that the RAISE Act includes a list of nearly 350 actions that 15 federal agencies agreed to take. He urged us to adopt a similar big tent approach and then seek elected officials to enact a national strategy. He said, "have a policy that's big enough that any group that looks at it can think, "there's something here for us."" It's a whole society approach.

Next, an international panel of caregiver leaders from the USA, UK, Ireland and Brazil compared and contrasted barriers and facilitators for engineering supportive change in their respective countries. One UK example has stayed with me: The Care Act states that caregivers are equal to patients and thus should have equal support from health and social systems. Dr. Nikki Dunne from Family Carers Ireland told us how her organization successfully lobbied to pay family caregivers.

In keeping with the idea that care provider wellbeing is intertwined with family caregiver wellbeing, I was keen to listen to a panel on just that subject. A number of front line caregivers told us how they felt invisible and under-valued. Their stories of commitment to caring in the face of racism and apathy brought me to tears.

But we need our elected officials to put skin in the game. We heard from Members of Parliament representing each of the major political parties in Canada. This isn't just talk - we need our tax dollars to support families because caregivers are in crisis. Thankfully, our message was well received.

We heard about policy innovations in Canada and how we leveraged terrible pandemic lock-down challenges to achieve the broad acceptance of "essential family caregiver" in hospitals and long term care homes.

Next, Dr. Brian Goldman interviewed Baroness Jill Pitkeathley, founder of Carers UK and "mother of the caregiving movement" worldwide. It was truly inspiring to hear the sum of her accomplishments over a lifetime of care advocacy. She challenged us, "You can do the same!"

Finally, it was time to chat amongst ourselves and set policy priorities for caregiver support in Canada. The discussion was passionate and we could tell that change is coming. We ARE a movement and together, we are stronger. I will always remember the words of Allison Barkoff, "Big groups speak with louder voices." Well, it's time to be heard. I call for a National Caregiver Strategy in 2024 and I hope you'll raise your voice with mine.

Happy New Year, everyone!

Isolated for the Holidays

2023-12-22T07:28:00.005-05:00

I haven't forgotten to write up Day 3 of the Canadian Centre for Caregiving Excellence Conference - I WILL get to it (all my notes are made and I can't wait to tell you what happened!). But, it's coming up to Christmas and I want to share something that is holiday-related.

A few days ago, I was browsing a facebook group for parents of children with disabilities. One mother asked for ideas on how to have fun at Christmas when extended family was unable to join and everyone felt blue that "nothing special" was going to happen over the holidays. Being homebound with loved ones who are mobility-challenged or too medically fragile to leave the house can be especially dispiriting at this time of year. But leave it to caregivers to share creative ideas about how to find the bright side and make happy family memories in spite of health challenges that necessitate being isolated at home over the holidays. Here are just some of great ideas I read with a few of my own thrown in for good measure.

Ask at your local shelter whether they do "doggy days out" - some let people borrow a pet for a few hours of unconditional love and playtime
Buy a Nerf gun and set up a targets (away from anything breakable) in the house and get ready to laugh
Choose a seasonal movie and menu to match for every day of the holidays
Christmas Bingo with "fabulous" prizes from the Dollar store
Christmas-themed charades
Build an epic fort and have hot chocolate in it
Play "Ghost Charades": the first round is the usual way of playing. The second round is using the same set of clues, but this time acted out under a bedsheet
Have a scavenger hunt in the house
Bring out old photos and tell stories about them (or make up stories)
Have a beach party and rent a hot tub
Have a singalong watch party of your favourite musical movie
Wrap dollar store gifts and try to guess what's inside without unwrapping it - the closest guess wins the present
Cook holiday food on Zoom or Facetime with family members - hanging out in the kitchen together can be fun
Add your idea HERE

Happy Holidays, everyone! And may 2024 bring caregivers recognition, appreciation and a National Caregiver Strategy!

The CCCE Summit Day 2 - Visit or Revisit the Highlights!

2023-11-28T15:08:00.002-05:00

November 7th was Day 2 of the Canadian Caregiving Summit and it was just as exciting as Day 1!

The theme of Day 2 was "Defining the need for a national caregiving strategy." The Canadian Centre for Caregiving Excellence told us that Canada (like many other countries) has reached a tipping point: many caregivers feel like they cannot go on, care providers are leaving the sector and people accessing care are struggling. The second day of the Summit focused on defining the need for a national caregiving strategy and its potential to transform the care economy for a brighter future of care.

We kicked off the morning plenary with a panel of Indigenous caregivers and experts discussing "Caregiving in Indigenous Communities and Decolonizing Care." Via video recording, we learned about the challenges and successes in supporting caregivers across 25 very remote communities in Nunavut. With 84% of the population identifying as Indigenous, any help for families must be culturally sensitive and accessible, even if the vast majority of communities are fly-in only. Panel moderator Angela Bradley from Community Living Toronto introduced fellow panelists Amber Ward (a second-year medical student at UBC), Holly Prince (researcher in the field of indigenous palliative care at Lakehead U) and Grant Bruno (Cree PhD candidate at the U of Alberta). Hearing all the different perspectives on care and family in Indigenous communities reminded me that the relationship-based communities of our First Nations have much to teach us about interdependence. Grant Bruno introduced a concept that we all talked about throughout the conference: care gifting. He said, "gifting care allows us to survive. Care as a transaction is not healthy. We shouldn't expect something back when we give care. In my community, we understand that ceremony is necessary and with it comes suffering, but also love, like when you dance in the hot sun for hours. I give care all the time every day to my family and to my friends. But my cup is overflowing because of ceremony, relationships and strength-based stories."

I had the pleasure of moderating the next panel, a subject very close to my heart: The Nexus Between Caregiving and Care Providing. Paul Knoll is a 51-year-old Ottawa-based artist with Down Syndrome. Paul lives with his sister, Helen Ries (co-founder of Siblings Canada) and Helen's husband Steffen. Paul described how his support workers honour privacy in the Knoll/Ries household and how family performs certain care acts that paid staff cannot. Why? Because Helen and Steffen know and love Paul best.

Next, we heard from Ann-Marie Binetti, a manager at Community Living Toronto who also cares for her parents at home. Ann-Marie didn't downplay the challenges of managing so many paid and unpaid care responsibilities in her life, but she also observed that, "I'm a better manager at home and more compassionate at work because of my role with my parents."

Then Dr. Afolasade Fakolade spoke about her research in the area of caregiver wellbeing at Queen's University. "Caregiving is not a pathology", she said, "we need to protect caregivers and care providers simultaneously. Both need training in the core competencies of their roles. Just asking, "How are you doing?" is not good enough!" Finally, Dr. Heather Aldersey also from Queen's University spoke about a study she is currently undertaking called "Beyond Services." That study seeks to investigate ways and means of enabling and supporting natural care - the unpaid support in families that is so often unrecognized and undervalued. Both paid and unpaid support are necessary but balancing those out is tricky and families want choice in that balance.

The next panel "Care Provider Workforce: Meeting the Needs," moderated by Johnna Lowther from Caregivers Alberta first introduced Dr. Ito Peng, a care economy researcher from the University of Toronto who presented the "5 Rs of care work: Recognize, Reduce, Redistribute, Represent and Reward”. Dr. Barathi Sethi championed the idea of a caregiver-friendly workplace policy and emphasized how this would benefit the wellbeing of all, but especially racialized women working in the front lines of health care. Jhoey Dulaca of the Migrant Workers Alliance for Change talked about the need to create pathways to Canadian citizenship for immigrants working in health care. John Yip, CEO of SE Health, surveyed all the home care staff at his company and found that their wellbeing was suffering because they feel so under-appreciated and undervalued. He is taking innovative steps to address this malaise in his workforce. Union representative Tyler Downey tackled the issue of racism and systemic oppression in health care systems. He challenged health care leaders to stop depending on barriers to the career growth of foreign-trained workers because they constitute cheap, skilled labour on the front lines.

The morning plenary sessions ended with a bang! In the panel, "How to Build a Federal Benefit from the Ground Up", we learned the story of two federal benefits that helped to lift Canadian caregivers and their families out of poverty. Al Etmanski shared his ten-year history developing the Registered Disability Savings Plan, using a relationship-based approach to crafting solutions even when government bureaucrats say it cannot be done. The story of unlikely champions in government working together with broad public support was inspiring for us all. Tyler Meredith told the story of creating the Canada Caregiver Credit from within the highest level of government where that idea originated. Finding the perfect partners at the perfect moment was a message I took away and, that change can happen with patience and perseverance!

Breakout sessions in the afternoon were wide and varied. I couldn't attend all the sessions because many were concurrent, but I can say a bit about two. I moderated a session titled "Round the Clock: The Complexities of Complex Care." The mother of a medically complex young man, Marcy White, identified two of her greatest challenges: the lack of proper training in home care nurses and the disorganized and dangerous transition of youth from pediatric to adult health care systems. Susan Bisaillon, CEO of Safehaven (a respite and residential facility for complex care children and adults) spoke about the need to "act now and apologize later" to meet extraordinary needs of her clients. Researcher Lin Li told us about the evidence that validates the testimonies of other panelists and added that family priorities also include how to construct a meaningful life for complex youth after school ends and how to enhance autonomy and independence when disabilities make that a huge challenge. Alex Munter, CEO of the Children's Hospital of Eastern Ontario offered the vexing perspective of how the billing systems of provincial health care makes delivering complex care...complex. "To innovate, we come up against remarkable regulation. It's hard to serve complex patients when we have 80 accountability agreements with Ontario and each agreement relates to a different body part." Dr. Nathan Stall then introduced a perspective on complex care seniors. Together, we wondered whether the big tent approach of the CCCE movement could provide a template for innovation in getting better services for the miniscule percentage of the patient population and their families with the very highest needs.

As the mother of a complex son, I was delighted to attend another panel on complex care titled "Missing from the Data: Working Parents Caring for Medically Complex Children." I identified with the dilemma expressed in that panel - that a lifetime of caring for a technologically dependent child meant loss of salary, pension and social opportunities. This lived experience is not documented in the literature. But it needs to be!

My next blog post will provide a round-up of the last day of the CCCE Conference. I hope by reading these panel descriptions, you will be inspired to click this link to join the movement for caregiver change in Canada!

The Canadian Caregiving Summit: Day 1 - All the Juicy Bits!

2023-11-20T09:39:00.000-05:00

I had the pleasure and privilege of attending the Canadian Caregiving Summit from November 6-8 in Ottawa, Canada. I cannot begin to tell you how thrilling it was to join with so many national and international caregivers, researchers, front line workers and policymakers. Together, we kickstarted a movement for public policy change in Canada to support caregivers, both paid and unpaid. I know that I speak for everyone at the Summit when I say that we know change is coming!

So, in a nutshell, here's what happened at the conference on Day 1:

Host and caregiver Ron Beleno introduced Elder and Chancellor of the University of Ottawa, Claudette Commanda to give her blessing to us all. We felt a sense of history, love and belonging in her beautiful words. She talked about LOVE - a word that I believe belongs caregiving conversations!

Next, Dr. Naomi Azrieli, CEO and Chair of the Azrieli Family Foundation introduced the roots and context of the conference and the Canadian Centre for Caregiving Excellence. Both the centre and the summit are powered by the Azrieli Foundation and it was Naomi who originally posed the idea of a national caregiver support initiative to the foundation board two and half years ago. Dr. Azrieli spoke movingly about working together to improve care in a fractured and violent world - a world on fire. She said, "We are grieving. We are stressed. But our initiative and many others besides, give us solace and energy. This summit gives us an incredible sense of possibility." Naomi described the moment when the idea of a caregiver support initiative first was proposed. "We didn't know what this idea would look like but we knew that Canadian caregivers were in crisis", she said, "and we are still in crisis. And it is only by bringing many voices together that we can enact change." It was a thrilling spark to ignite the discussions that would follow.

Liv Mendelsohn was the next speaker. Liv is the Executive Director of CCCE and she took a deeply personal approach in her remarks. She described the circles and cycles of care in her family beginning with her mother Lillian and "Bubby" Myra. When Liv's babies were born, Lillian cradled them to give Liv a much needed rest. Myra's hand guided the very young Liv safely across the street and when Myra was diagnosed with Alzheimer's Myra moved into Liv's family home. Then it was Liv's hand that guided Myra safely across the street. When Mom Lillian was diagnosed with terminal cancer, Liv became caregiver again until her beloved mother died. Today, caring for her father, Liv is looking to the future. She observed that her children will care for her, bringing care in Liv's family full circle.

Then, Liv presented new data from a national survey of caregivers in Canada. This is what we learned:

90% of respondents need broader financial support
2/3 of caregivers report financial hardship that is tied to caregiving duties
94% need better access to home care services
only 25% feel well supported by government
64% of care providers say higher pay is needed for job satisfaction
1/3 of care providers have thought about leaving the profession due to low wages and burnout or stress

Next, distinguished health journalist at the Globe and Mail and author, Andre Picard, gave a keynote titled Why Care Matters. He set the stage by observing that people are living longer than ever before and in an aging society, that reality is worth celebrating, not catastrophising. Picard's speech centred on the theme of respect: respect for women who make up the majority of caregivers and respect for patients and their health care and dependency needs. He remarked that the 53,000 deaths of seniors from Covid in Canada constituted a "massacre of neglect" based on ageism and ableism that is embedded in our health policies. Picard called for a transfer of funding from long term care to home and community care in order to end "the apartheid that is the reality of over 400,000 Canadians living in institutional settings when they would rather be at home with support." Andre Picard reminded everyone, especially the policymakers in the room, that policy change with teeth and funding is required if we truly want a future that includes respect for people with care needs and their families.

Reciprocity in Care was the next panel, recorded by moderator Terrence Ho and siblings Amy and Holly Mathers. Born with a genetic disability causing severe kidney disease, Amy Mathers received a kidney transplant at a young age. The sisters bonded in adulthood over "survivor guilt" - Amy because a healthy child had died to save her life with a new kidney and Holly, because Amy was born with a genetic disease, not herself. They described the term "club sandwich caregiving" as opposed to simple "sandwich caregiving". It was a term that many conference-goers would use to describe their own situations with layered and multi-generational caregiving.

There were many more exciting panels on November 6 and you can read about them HERE.

Photo provided by CCCE and taken by Byfield-Pitman

For me, the highlight of the day and of my working life happened at the Gala that evening. I was awarded the Vickie Cammack Trailblazer Award. The Vickie Cammack Trailblazer Award is awarded to a passionate individual who has demonstrated unwavering dedication to changing the landscape for caregivers and/or care providers in Canada. I was moved to tears because Vickie was my friend and my mentor. Her husband Al Etmanski, Canada's most brilliant social innovator in disability poverty reduction, gave a speech as did Vickie's daughter, Lena. Vickie died on December 27, 2022 from pancreatic cancer. She was a personal hero and close friend. You can read more about her remarkable contributions to caring families HERE.

My next blog post will take you through the highlights of the Canadian Caregiving Summit, Day 2!

Caring, Grieving and Remembering When the World's On Fire

2023-11-11T09:27:00.001-05:00

Last week I had the privilege of attending the Canadian Centre of Excellence (CCCE) Summit. It was three days of continuously invigorating, challenging and hopeful discussions. I will write more in the coming days about the Summit and what I learned, but today I want to reflect on the meaning of care in times when part of the world is at war. Today is Remembrance Day and the news is full of unimaginable violence and brutality in the Middle East. The CCCE is powered by the Azrieli Foundation and Naomi Azrieli in her opening remarks at the Summit reflected on how we must persevere in caring even when "the world is on fire." This is a post that I wrote on Remembrance Day in 2019 and it seems especially appropriate today.

November is a sombre month. The leaves have fallen where I live, and the skies are steely gray. Rain changes to sleet and then back to rain again. Geese cry overhead.

On the streets, most people are wearing poppies. "Lest we forget" is a warning phrase we see in bus stations, on facebook and on veteran sponsored ads on television. I won't forget the sacrifices made by our soldiers, because my Dad was one who fought in Europe during WW11. He was one of the lucky ones - he came back.

My Dad was kind, gentle, quiet and very funny. My sister and I adored him. In 1973, he suffered the first of three strokes and for two years until his death, my Mom, my sister and I cared for him at home.

Recently, I have been thinking a lot about the meaning of care over years - how care changes and how it changes us. Maybe it's the melancholy of November or perhaps it's the messages I see in my news feed about Caregiver Month and Remembrance Day (or Veterans Day as it's called in the US).

Yesterday I listened to an extraordinary podcast interview with Dr. Arthur Kleinman, author of The Illness Narratives and his latest book, The Soul of Care: The Moral Education of a Husband and a Doctor. For ten years, Dr. Kleinman cared for his wife who had Alzheimer's. He also happens to be a medical anthropologist at Harvard. But here's what he said that reminded me of my own life of caring and of my Dad:

"The real issue about caregiving is that there's no Hollywood ending. So, how do we endure? This is the challenge. We are never sure that we can endure the unendurable. How do we keep going?

How many people come to a wall and feel that we can’t get over it but because of love, we get over it. Love and moral commitment. The last part is that care does not end with the death of the person - you care for memories after that. Building a story about one’s life and one’s family. And central to that is memory, memory of the care you gave and what went before… the time we spend developing those stories."

I do remember my Dad and in that way, I continue caring for him. And this month, I salute every other caregiver who is with someone who needs them, finding a way to scale a wall of despair and exhaustion because of love.

Here's a Concept That May Explain a LOT

2023-11-01T13:50:00.005-04:00

A few months ago, I was chatting with the caregiving thought leader and founder of the Caregiving Years Training Academy, Denise Brown. Denise and I always have great conversations and this time, she mentioned an idea that really caught my attention. "You know why caregivers are so desperate?" she asked, "it's because they don't have their basic needs met."

I've been thinking about this a lot. When I read about the real life trials and tribulations of overworked and overwrought caregivers, I ask myself, "which of their basic needs are not being met? Do they have enough rest? Do they have enough money to live without worry about food and shelter costs? Do they have time for reflection in order to process loss and grief? Do they have access to exercise and time outdoors?" The list goes on. Most often, I see that caregivers have multiple unmet needs. And these needs are BASIC, they are not frivolous. Basic needs are the minimum standard that humans need to survive, much less thrive.

What if we had support programs that were designed to meet caregivers' basic needs? What would such a program look like?

Next week, the Canadian Centre for Caregiving Excellence is holding its first ever Summit from November 6-8th in Ottawa. Organizers will be seeking policy suggestions from the audience and I intend to suggest this one: that meeting caregivers' basic needs should be one framework for considering how to advocate for a national caregiver strategy.

So, I would like to know from you: 1) Do you have your basic needs met? and 2) Do you have caregiver support policy ideas for the federal or provincial levels of government in Canada?

Thank you for sharing!

So THAT'S Why Caregivers Feel So Desperate!

2023-05-05T12:13:00.004-04:00

Last week, I had a fascinating chat with the caregiving guru (and I don't use that word lightly), Denise Brown. Denise is the founder of the Caregiving Years Training Academy and has been guiding caregivers to resources and wisdom for almost 30 years. If you have a break in your day, grab a cup of tea or coffee and listen!

Denise said something that really got me thinking. She remarked that both caregivers and those we care for are in a state of crisis because we do not have our basic needs met. I've been reflecting on the worst times in my caring life and I thought, "that's true. Those were the times that my needs were not met. And I was frantic that I wasn't meeting the needs of my loved ones too."

So I began to ask myself, "What ARE basic human needs?" A quick google search led me to this article on Maslow's Hierarchy of Needs. Maslow was the clever scientist who devised this theory showing that (moving from the bottom of the pyramid upwards) we need our physical needs met before we can address higher level emotional or spiritual needs. But all these needs are important in human flourishing.

Looking at this pyramid, which of your needs are fulfilled? Which needs are not being met currently in your life? What about the person you care for?

Throughout the month of May, National Caregiver Month is celebrated across Canada to acknowledge the over 8 million people providing care to a family member, friend, neighbor or chosen family across the country. #CaregiverAware is a national campaign to raise awareness about the experiences of caregivers in Canada. I wonder how many of us have our basic needs met. Let's talk about our need for support and the right to an ordinary life that feels safe and liveable. Maybe Maslow's Hierarchy of Needs gives us the language to talk about getting the help we need to survive and thrive.

Mother Lode: Confessions of a Reluctant Caregiver

2023-04-10T09:40:00.005-04:00

When Dr. Zachary White and I were in the research phase of writing The Unexpected Journey of Caring, we talked about a phenomenon that we were observing in caregiver support groups online. Zachary called it “the great migration.” More and more caregivers (mostly women) were moving away from their own families to care for aging parents sometimes in another part of the country. Usually precipitated by some kind of crisis, most caregivers believed that a live-in stay with a parent would be temporary but many remained trapped in the role for years, apart from husbands or wives and children. This is what happened to Gretchen Staebler, author of the riveting memoir Mother Lode: Confessions of a Reluctant Caregiver.

To anyone who has ever or WILL ever care for a parent, I recommend reading this book. The author fearlessly dissects her complicated relationship with her mother Stellajoe and her two sisters. The ghost of a beloved father is a shadowy presence throughout. Childhood relationships and old patterns become wholly unhelpful when Stellajoe becomes an unwilling dependent on her daughters. But it is Gretchen who has the greatest burden of care.

Regular readers of my blog will recall my own caregiving journey with my Mom and then my complicated emotions when she died in August of 2018. I think my mother and Stellajoe would have been friends – they would have had a gleeful competition about how they could exert a crazy kind of control and then watch their exasperated daughters slink away in tears of defeated frustration. Gretchen Staebler’s words struck a deep chord: “This had seemed like a good idea. What the hell was I thinking?”

I remember once, when my Mom had a life-threatening case of salmonella that she contracted from tainted peanuts, I rushed home to Montreal from London. My sister was exhausted and I was living abroad. I knew that when I came home, I could devote all of my time and energy to Mom’s care without distraction of my own family’s needs. I could offer my sister a REAL break – it was the least I could do. So I came for two weeks and navigated my mother from the hospital back to her senior’s residence with a lot of highly recommended homecare workers I hired to assist. When I arrived back in the UK, I called my Mom. “I just want you to know that I made it back fine”, I said. Mom: “You’re going to be mad.” ME: “What? Why?” MOM: “I fired them all. I had nothing in common with them. They don’t ski.” I could have wept. Or screamed. Gretchen Staebler’s book brought all this back, but the pulsing vein of love on every page rang true for me too.

The author’s vow to stay with her mother for one year evaporates and a series of Stellajoe’s health crises confound the author’s attempts to carve out personal space and a life of her own. One year turns into nearly six. But the author’s mind and heart are not idle. She is learning deep life lessons of what she can control and what she cannot. She is learning to make peace with her past, present and her future. She is learning to make peace with her mother.

The author describes her newfound wisdom with truth and poignancy: As the miles rolled away, though, I slowly let go of my grip on what I thought my life would be as I turned sixty and began to look through the windshield rather than the rearview mirror Mama and I are tied to each other by an invisible elastic band, stretching only so far before reaching its capacity and snapping us back together.

The title of my first book, The Four Walls of My Freedom is taken from Thomas Merton’s The Seven Storey Mountain in which he writes about how when he arrived at his monastery for the first time, he found “the four walls of my new freedom.” When our son Nicholas was born with severe disabilities, my baby and I became homebound. We needed to discover a path to a liveable, even a good life within our four walls. Gretchen Staebler quotes Merton too, coming the same realization as me: Merton writes on how we have to come to terms with the idea that our efforts, no matter how sincere, may be “worthless.” He reflects: As you get used to the idea, you start more and more to concentrate not on the results, but on the value, the rightness, the truth of the work itself. . . . In the end, it is the reality of personal relationship that saves everything. And later, The central question…. would have to change from ‘What do I want?’ to ‘What is available?’

I have been thinking a lot about my own mother since reading this book. How I sat by the river when she died, wondering, “Who was my mother? Who was she to me and me to her? What is my story about her? The old stories don’t work anymore, they don’t feel true. I just don’t know.” Later, I realized that I had to forgive my mother for being imperfect. And I realized my task was to mother myself in a way that I needed so that I could be released by forgiveness to love her. I have a lot in common with Gretchen Staebler and I bet every caregiver of a complicated mother does too.

Please read this book.

Happy National Caregivers Day in Canada - Reasons for Hope

2023-04-04T08:47:00.005-04:00

Today is National Caregiver Day in Canada. I feel spring in the air and I'd like to share some trends that I feel hopeful about - hopeful for the future of caregiving here in Canada and across North America.

The first reason I'm hopeful is that The Canadian Centre for Caregiving Excellence is on a path towards successfully advocating for a national caregiver strategy which will ease the burden of care for us all. Disease associations and health care workers will join hands with disability organizations to form one massive coalition for caregiver support. We're all in this together and this is the first time any group has had the money, the power and the will to bring the country together for the good of caregivers. If you would like to participate in this movement for change, join the group's Canadian Advisory Network and share your experience.

I am hopeful because there is so much research going on in Canada that is rooted in partnerships with family caregivers. This matters because this new model of partnership with families transforms both what is researched and how it is researched. And research informs the way health care is delivered. Caregivers like me suggest problems we'd like investigated, like my son's seizures during sleep or my Mom's model of small group assisted living arrangements. I tell researchers what really matters to our family at every stage of the project. Then I tell the family community about what the research found - in plain language. This is radical and it's new.

If you are a parent of a child (any age) with disabilities, you might want to read about the Family Engagement in Research Program at McMaster University. If you want to have a role in creating a new caregiver support education program for health care professionals, then check out the University of Alberta's Caregiver-Centred Care Program (and tell your health care providers about it!).

I am hopeful because there's a growing conversation in Canada about how local neighbourhoods can organize to support our caring families. The Asset-Based Community Development movement or ABCD is an concept of neighbour helping neighbour in an organized and supported way, based on people's interests, talents and availability. It's a clarion call to the spirit of community in which we know and care for one another. Cormac Russell is the Executive Director of Nurture Development (ABCD in Europe) and here, he explains the idea of neighbourhood as a unit of health and change.

If this ideas intrigues you and offer you hope the way it does for me, then read Cormac's new book, The Connected Community. In the book, Cormac and ABCD co-founder John McKnight offer a wealth of illustrative examples from around the world that will inspire you to explore your own community and discover its hidden treasures.

What else gives me hope? Cori Carl's writing - I'm a subscriber to her blog for The Caregiver Space. I experience a tiny thrill when I see a new edition appear in my inbox. Cori writes about people caring for each other from quirky angles, offering new perspectives on my own life with every new idea.

I am inspired by signs of spring. There is still snow on the ground where I live, but we are making maple syrup with our neighbours. I will bring some over to Nick and we'll have pancakes together, savouring the divine golden syrup. Like all things made at home with love, it is so much better than store-bought!

Finally, what gives me hope every day is my family. We love and celebrate each other. I'm so proud of our children. I don't know what the future holds for our society or our planet, but on National Caregivers Day 2023, I choose hope, love and family.

Caregiver Recipe Exchange!

2023-02-24T08:56:00.002-05:00

I love food and I love to cook. But like any other caregiver, I often have no time to make something healthy and delicious, so that's when I turn to my "Under 30 second preparation time recipes."

Now, some of these recipes require slightly more than 30 seconds to make, but they are all quick, easy and include only ingredients you might have in the cupboard or fridge. I would love to hear your recipes and so, let's share! Pop your favorites into the comments section and I'll post any that are shared on The Caregivers' Living Room facebook page. 😃

I'll start. Here's a great recipe for Greek Sheet Pan Chicken. Serve with a microwave-able packet of rice and voila - delicious AND healthy dinner!

This Greek sheet pan chicken is an easy, all-in-one dinner recipe with juicy chicken thighs nestled around vibrant, caramelized vegetables. With 450 five-star reviews, you can't go wrong!

INGREDIENTS

INSTRUCTIONS

Preheat the oven to 425°F (220°C). In a small bowl, whisk together the oil, lemon juice, garlic, oregano, thyme, Dijon mustard, salt, and pepper.

Place the chicken thighs in a bowl and pour ⅔ of the marinade on top, then use your hands to toss the chicken in the marinade and make sure it's well coated. Marinate the chicken for 10 to 15 minutes.
While the chicken is marinating, spread the zucchini, bell pepper, red onion, and tomatoes onto the baking sheet and drizzle the remaining marinade on top. Toss together to coat the vegetables.
Add the chicken thighs the baking sheet, nestling them around the veggies, and bake for 30 minutes.
Remove the baking sheet from the oven, add the olives and feta and then place it back in the oven for another 10 to 15 minutes, or until the vegetables are softened and the chicken is cooked through to 165°F.
Sprinkle the chicken and vegetables with chopped fresh parsley before serving.
Here are two old faves of mine: instant brownies and apple torte - you can mix them up with a fork or spoon!

BROWNIES:

1/2 cup of margarine or butter melted in the microwave

2 heaping dessert spoons of cocoa powder

1 cup white sugar

2 eggs

1 tsp vanilla

3/4 cup flour

chopped nuts if desired

Mix before and after adding flour. Pour into greased 8" pan and bake at 350 just until slightly firm and pulling away from edges of pan (don't overbake or they won't be chewy).

APPLE TORTE:

2 eggs

1 1/2 cups sugar

3 good size apples peeled, cored and chopped (any kind of apples work)

2 tsp baking powder

1 cup flour

large pinch salt

Raisins or nuts if you want

Mix the eggs and sugar with a fork and then add all the other ingredients, mixing again. Pour into a pie plate or 8-9" greased pan. Bake at 350 until just golden brown on top. Great served with vanilla ice cream.

What are your go-to caregiver favourite recipes? Share away!

For National Caregiver Day, A Reflection on Receiving Care

2023-02-17T08:45:00.006-05:00

Yesterday I had a fascinating conversation with Laurel Wittman, President of the Well Spouse Association. Laurel is a long-time carer for her husband who has MS. After chatting a while about spousal caregiving, I asked, "How does your husband care for you?" It was question that changed the direction of our conversation and helped us both reflect on the reciprocal nature of care.

Today on National Caregiver Day (USA), I want to share how I feel about receiving care.

My son Nicholas has multiple disabilities and throughout the course of his life, he has consoled me, lifted my spirits and certainly made me laugh. My Mom had dementia for the last ten years of her life but she would say, "Sit down little one. Let me give you a neck rub." When family members in my care offer me care, I am usually taken a bit by surprise. I pause and think, "Why yes, I need this, thank you!"

Care is a two way street and part of building a new paradigm for active citizenship will have to include some training in “receiving” care. Why do we so often believe that we have only one role as caregivers: to GIVE care?

Age does not preclude anyone from enjoying the benefit of understanding the rules of engagement when it comes to receiving care. Children are taught to respect their parents’ efforts to provide for and nurture everyone in the family. Why should this expectation diminish in the case of disability or ageing?

Perhaps we need to start with ourselves. The next time I am having difficult day and a friend says “Is there anything I can do?” I plan to answer “Yes”, even if I can’t articulate what kind of help I need. The first step is accepting an offer of help. The second step is saying “Thank you!”

Nicholas knows how to be kind and when I am sad, he offers me hugs (his hugs are the BEST). He is such a good listener. I know that his nurses share stories of heartbreak and he nods empathetically. He is a compassionate and loving person. Why would anyone (especially me) believe that he can or should not give care because he is disabled?

Educators have managed to incorporate lessons in ethics and self-esteem in the curriculum. I propose we add some learning objectives to our teaching that relate to giving and receiving care. At lunch one day, children could experiment with feeding each other. In a care home, residents could set aside one hour per week to wash the face and hands of the care home staff, or simply listen to their problems.

If we believe that relationships are the key to a good life throughout life, it ensues that everyone will at some point give and at other points need to receive care. But the language, good manners and ease of transition from one role to another is key to getting good care into the social water supply.

Quitting Time: A PM's Resignation Has Lessons for Caregivers

2023-01-19T13:22:00.009-05:00

Yesterday I learned that Jacinda Ardern, Prime Minister of New Zealand who led her country for the past five years, resigned unexpectedly. In an emotional statement, she said, “I am human, politicians are human. We give all that we can for as long as we can. And then it’s time. And for me, it’s time." Ardern said she had reflected over the summer break on whether she had the energy to continue in the role, and had concluded she did not. Then asked how she would like people to remember as Prime Minister, Ardern replied, "as someone who always who always tried to be kind."

I have greatly admired Jacinda Ardern as someone who leads with integrity and great compassion. There was never any "spin" to her words - she always spoke naturally, with informed intelligence and with empathy.

Ardern's resignation made me think about caregivers - the limits of our service and our self-awareness. What happens when we realize that we no longer have the necessary energy to continue? Can we resign?

When my Mom moved into assisted living, I wondered if my sister and I had resigned. When our son moved into his medical group home, my husband and I questioned ourselves and we worried. Both of those moves turned out to be the best decisions for all concerned, but they did test our confidence as responsible caregivers at first. But then we realized that there is more than one way to give care and that a caregiver continues to lead (differently) with a loved one who lives outside the family home. Caregiving is a project and a caregiver can continue to be the project manager without being responsible for all the tasks that are necessary to a loved one receiving good care.

One of the activities that keeps me busy these days (and I love it!) is co-designing and co-instructing a suite of courses titled Family Engagement in Research at McMaster University. Last semester we launched our first cohort of a new Leadership Academy in which childhood disability researchers partner with parent partners in research to gain leadership skills. Our instructor team identified 5 core competencies for leading this blended approach to research leadership in institutional or community settings. Those competencies are self-awareness, empathy and compassion, communication, advocacy and entrepreneurship. Certainly Jacinda Ardern embodies these competencies in my opinion, but so do a lot of fellow caregivers I know.

For the good of our health and even survival, we need to recognize when it's time to step back from a lead role in care. And it's a matter of justice that we should be able to do so without putting our loved one at risk. We should communicate that need to step back with empathy and compassion, but we should also advocate strongly and strategically for our own wellbeing. And we should employ an entrepreneurial approach to identifying opportunities to follow through on our action plan. Sometimes stepping back and sharing the reality of an "empty tank" is good leadership.