Monday, 3 February 2025

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.

 
 

Saturday, 18 January 2025

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 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
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 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. 


Friday, 20 September 2024

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. 


Thursday, 27 June 2024

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. 

Tuesday, 16 April 2024

PLANNING FOR THE LONG TERM

 

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 DubĂ© 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


Thursday, 4 April 2024

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


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

Thursday, 1 February 2024

Couples as Caregivers


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.