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

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

 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

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).

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 due to aging.

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?

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: [email protected]; 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

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 car
And I want a ticket to anywhere
Maybe we make a deal
Maybe together we can get somewhere

Any place is better
Starting from zero, got nothing to lose
Maybe we'll make something
Me, myself, I got nothing to prove

You got a fast car
And I got a plan to get us out of here
Been working at the convenience store
Managed to save just a little bit of money

Won't have to drive too far
Just across the border and into the city
And you and I can both get jobs
Finally see what it means to be living

See, my old man's got a problem
He lived with the bottle, that's the way it is
Said his body's too old for working
His body's too young to look like his

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

You got a fast car
Is it fast enough so we could fly away?
Still gotta make a decision
Leave tonight, or live and die this way

So, I remember when we were driving, driving in your car
Speed so fast, I felt like I was drunk
City lights laid out before us
And your arm felt nice wrapped around my shoulder
And I, I had a feeling that I belonged
I, I had a feeling I could be someone, be someone, be someone

You got a fast car
We go cruising, entertain ourselves
You still ain't got a job
So I work in the market as a checkout girl

I know things will get better
You'll find work and I'll get promoted
And we'll move out of the shelter
Buy a bigger house, live in the suburbs

So, I remember when we were driving, driving in your car
Speed so fast, I felt like I was drunk
City lights lay out before us
And your arm felt nice wrapped around my shoulder
And I, I had a feeling that I belonged
I, I had a feeling I could be someone, be someone, be someone

You got a fast car
I got a job that pays all our bills
You stay out drinking late at the bar
See more of your friends than you do of your kids

I'd always hoped for better
Thought maybe together you and me'd find it
I got no plans, I ain't going nowhere
Take your fast car and keep on driving

So, I remember when we were driving, driving in your car
Speed so fast, I felt like I was drunk
City lights lay out before us
And your arm felt nice wrapped around my shoulder
And I, I had a feeling that I belonged
I, I had a feeling I could be someone, be someone, be someone

You got a fast car
Is it fast enough, so we could fly away?
You still gotta make a decision
Leave 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

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!

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.