Sunday, 19 February 2017

The Hardest Part of Caregiving: Fostering Meaning and Purpose

“I feel useless. Good for nothing…” my Mom says. I recount back to her the ways she gives to our family and for a moment, she feels like a contributor. Before I leave, Mom pushes a ten dollar bill into my hand. “Here, give this to Nick. He can buy himself a treat.”  "Thanks, Ma", I say, "I know he'll appreciate it."

At Nick’s place, he’s working on putting the finishing touches on a resume with Tom, his helper. Nicholas wants a job at the local hockey arena, or perhaps reviewing Playstation games from the perspective of a person with disabilities. Nick has lots of ideas for part-time employment.

It’s very tricky finding ways for seniors or people with severe disabilities to have real meaning and purpose in their lives. Fulfilling care needs takes time, so only slivers of the day are free for work. Some days, illness or pain gets in the way of the ability to focus on contributing to a cause or carrying on a job search.

I’m always on the lookout for innovative ways that caregivers or other innovators have found to enable purpose in the lives of those with high care needs. I’ve blogged before on this complicated topic. In that post, I described this wonderful online program matching residents of a Chicago seniors’ home with English language students in Brazil. Seniors perform the valuable service of chatting with language students who otherwise would never have the chance to converse with a native English speaker.

Last week, I struck up a conversation with a new friend. He told me that in his home of  Ridgefield, Connecticut, The Prospector Movie Theater provides opportunities for training and employment of people with disabilities.

 It's the only cinema in town and because it runs new release films, it's a highly successful business model. I was intrigued. Here's what the website says about the theater: 

The Prospector Theater is a new model of social enterprise. It pairs a first-run, commercial movie theater with the mission of training and employing adults with disabilities. It's a not-for-profit system, with the competitiveness and transparency of a for-profit business model. It shows how community groups, businesses, and people in the private sector – working together – can improve the quality of lives for those with disabilities, while lessening the financial burden on the government and helping boost employment rates.

And here's how the company describes its employees: 

Our employees, known as Prospects, live a higher quality of life through meaningful employment, and are encouraged to sparkle, shine, and turn their passions into professions.

The Prospects – trained and employed by the Prospector Theater – drive positive change in the behavior and perception of the capability and employability of people with disabilities, opening the doors to large-scale increased meaningful employment outcomes in every business setting. Through pairing Prospects with an appropriate and fitting job, we can ensure that we are developing Prospects’ sparkle, while equipping that individual with the transferrable job skills needed to jump-start their career. If you give a man a fish, he can feed himself for a day. Teach a man how to fish and he can feed himself for a lifetime.

Over the years, I've come to believe that it's not happiness we crave - it's meaning and purpose. In order to feel we're experiencing a rich and full life, we all need to give to a cause outside of ourselves - something that contributes to the greater good. It's a tricky challenge to achieve this for frail elders and for people with disabilities, but it's not impossible. I'm inspired by these innovative models of contribution and I hope you are, too. 

Thursday, 16 February 2017

It Feels Good to Know People are Listening

I was excited to receive two compliments on my blog this week. The first is from Drive DeVilbiss Health Care - they honoured me by listing The Caregivers' Living Room as a 'Top Caregiver Blog'.

And Stairlifts Reviews listed The Caregivers' Living Room as one of the 100 Best Caregiving Blogs.

And after posting this yesterday, I woke up this morning to find that The Caregivers' Living Room had been named by Feedspot as one of 60 Top Aging Blogs on the web. Gosh!

Thank you for listening, for sharing and for supporting caregivers with information and friendship online!

Thursday, 9 February 2017

It's Time to Change The Way We View Exercise For Frail and Critically Ill

I'm posting this guest post from because my Mom has had so much difficult regaining her strength after 3 hospitalisations in the past 4 months. Next time my Mom is in a hospital bed, I'm going to ask for in-bed cycling!

It’s time to change the way we view exercise for frail and critically ill patients

By Michelle Kho

In-bed cycling in critical care units could be a way to improve patient health and save money

A version of this commentary appeared in the Winnipeg Free Press 

Frail and critically ill patients can safely bike in the intensive care unit, even early in their ICU stay.  These are the exciting findings from an in-bed cycle program that aims to get hospital patients — even in intensive care units — pedalling as soon as possible with therapeutic bicycles, so they are functioning better by the time they leave hospital.
Why throw in a fitness plan for patients who already have so many critical medical issues?  The reason is because patients who are stuck in bed are precisely the patients who need in-bed cycling the most.
Anyone who’s tried hitting the gym or recovered from injury knows that muscles can take weeks to gradually strengthen.  But did you know that muscles only take days to quickly deteriorate?
In fact, many previously active patients are unable to walk when they are discharged from critical care due to profound muscle weakness.  In new research, my colleagues and I show how we start to think of rehabilitation, very early in a patient’s ICU stay to help prevent or minimize this weakness.
What is in-bed cycling?
The in-bed cycle involves a specialized exercise bike that rolls over patients’ beds. These cycles have a motor, can move patients’ legs for them or allow patients to cycle on their own.  Patients stay on their back while their lower legs and feet are secured into slings and pedals while their legs move in a cycling motion.  The in-bed cycle also has video screen that helps motivate more alert patients with animation of their virtual ride.
In-bed cycling is an especially promising early exercise intervention because it targets the legs, particularly hip flexors, which are most vulnerable to muscle atrophy and weakness during bed rest.
Cycle therapy can also safely begin right after resuscitation, while patients are still attached to life support, whether patients are awake or sedatedThat’s right, patients can be pedalling even before they wake up.
We recently conducted a study with frail and critically ill patients connected to machines to help them breathe to see if they could start cycling very early in their ICU stay. Our study found cycle-therapy safe because there were very few times where patients stopped cycling early due to medical concerns — and feasible, because over 90 percent of patients or substitute decision makers who were approached agreed to participate in the study.
So far, our team has trained eight ICU facilities and over 45 physiotherapists across Ontario to provide in-bed cycling in our ongoing research.  The rest of the country is still waiting for cycle therapy.
Here’s why hospitals should review and expand their approach to rehabilitation across the country.
Patients in critical care are rigged up to all sorts of specialized equipment, including machines to support breathing, medication pumps and monitors.  Despite all this investment, few critically ill patients receive exercise, which is key to their recovery.
Without rehabilitation, physical strength quickly deteriorates and patients wind up leaving ICU with new weaknesses acquired in the ICU.  This in turn can result in longer hospital stays, higher risks of mortality and more healthcare costs.
Canada’s population is aging and Canadians over 65 years of age account for 78 percent of the three most expensive types of hospitals stays by diagnosis: cardio-pulmonary disease, pneumonia and heart failure without angiogram.  These are all conditions that require some time in ICU.
Yet, we’ve recently witnessed cutbacks to physiotherapy services in our acute care hospitals.
It’s time to change the way we view exercise for frail and critically ill patients.  As soon as we resuscitate, we need to think of starting rehabilitation interventions, even in the ICU, to optimize their recovery.
Early in-bed cycling is one creative therapeutic approach for critically ill patients, for supporting our aging population, and for potentially saving significant healthcare dollars down the road.

Michelle Kho is an Assistant Professor in the School of Rehabilitation Science at McMaster University, physiotherapist at St. Joseph’s Healthcare Hamilton, and Network Investigator with Canadian Frailty Network.  She holds a Canada Research Chair in Critical Care Rehabilitation and Knowledge Translation.
This entry was posted in Commentaries, Aging Population & Its Potential ImpactCommentaries, Health is More than HealthcareFeaturedOur Commentaries and tagged .
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Sunday, 5 February 2017

How Caregiving Changes Us - What Dies, What Grows

Lately I've been thinking a lot about how we change over time as caregivers - the parts of ourselves that die and the new parts that grow. 

What has died in me:

  • An assumption that I will have spontaneity in my life
  • The idea that life would carry on according to my plans
  • The inability to be alone
  • Insecurity in my own abilities to do what I put my mind to
  • Fear of vulnerability
What has grown in me: 
  • The sense of being happy without other people to 'make' me happy
  • Humility in the face of the random nature of what life deals me
  • Confidence in my values and in my advocacy skills
  • Acceptance of my own limitations in keeping my loved ones healthy and safe
  • A growing awareness of my own mortality
What has died in you? What has grown? 

PS: See more images by this artist at

Tuesday, 31 January 2017

CAREGIVER'S FRIEND: Menu and Recipes

I love food and I love to cook. When caregiving at home gets crazy busy though, my favorite recipes are just too time consuming to prepare. That's when I go to my 'under 5 minutes preparation time but delicious' collection.

Here's a sample menu that's very quick to make and so delicious that even the pickiest eaters in your family will love it.


4 Boneless Chicken Breasts or 2 double sided breasts -  cut up into biggish pieces - OR works great with tofu if you are vegetarian
2 onions (peeled and chopped into 1/4s or 1/8s)
1 purple onion (peeled, cut up) *if you have it, if not, forget it and throw in an extra reg. onion
1/2 package of soft, unripened goat cheese, broken up (if very soft, pop it into the freezer for a few minutes and then break it up)
Sweet chili-garlic sauce (approx 1/2 bottle)
Cilantro for decoration and flavor, if you like it.

1. Drizzle a bit of sweet chili sauce on the bottom of the pan. Add chicken, onions and rest of chili sauce.
2. Crumble goat cheese over top
3. Bake at 350 degrees for approx 40 min. Garnish with fresh cilantro

Service with Rice (I find the Uncle Ben's microwave instant rice-in-a-bag is the handiest) and a green salad.

OR if you don't like the sounds of that recipe, try this one:


2 1/2 - 3 pound chicken cut up or same amount in breasts or thighs
1/2 cup olive or vegetable oil
1/4 lemon juice
2 tsp dried oregano leaves
1 tsp salt
1/2 tsp pepper
1 clove garlic, chopped
Lemon slices to garnish

Place chicken pieces in an oblong baking pan. Mix remaining ingredients except lemon slices; pour over chicken. Cook uncovered in 375 oven, spooning mixture over chicken occasionally, 30 minutes. Turn chicken and cook 30 min more or until chicken is cooked through in thickest parts. Garnish with fresh lemon slices.

Serve with couscous (who doesn't love to boil water, add couscous and 3 minutes later, it's ready?!)
And a green salad - I like arugula mixed with dried cranberries and maybe some salted shelled sunflower seeds. But any old salad will do!)

And for dessert:


1 egg
3/4 cup white sugar
3/4 cup or so of sliced apples (about 2)
1 tsp baking powder
1/2 cup flour
pinch salt

In a bowl, mix egg with a fork together with sugar. Add all other ingredients and pour into a greased, small pie pan (about 6"). Bake at 350 till golden brown.
*Double recipe for larger, regular size pan.



1/2 cup butter melted in microwave
2 heaping dessert spoons of cocoa powder
1 cup of sugar
2 eggs
1 tsp vanilla
3/4 cup flour
and some chopped nuts if you like.

Mix before and after adding flour. BAKE 350 for about 1/2 hour in greased 8" pan.


Wednesday, 25 January 2017


Yesterday, my caregiving colleagues Al Etmanski and Vickie Cammack hosted me in a fascinating chat about advocating with empathy. Have a listen to our discussion and let me know what you think. Have you been successful in advocating with empathy? What kinds of advocacy have worked for you as a caregiver?

As is often the case, I've been thinking about this conversation since we went live online yesterday. I've been mulling over the idea of advocating with LOVE. What I meant by that phrase is that we love the people we are caring for. When we advocate for them, we can either interpret that love as a weakness or as a strength. I believe it is a significant strength. And I've been thinking that the other pillar of successful advocacy is fearless imagination. Brainstorming bold, creative solutions to problems is key, too.

Because we are dependent on programs and services to help us, sometimes we forget to put aside relevant policy regulations when we advocate. All rules can be broken, especially when it suits the interests of all concerned. I believe that advocating with love, empathy and fearless imagination is what it takes to be successful. And these are all starting points for shared inspiration that everyone can relate to. We are all human, after all.

Monday, 23 January 2017


As my regular readers know, I'm a huge fan of technology. It is my pleasure to host an exciting guest post about virtual reality possibilities for dementia care.  This is really exciting stuff! Today's guest blogger is Gillian Douglass, medical writer for Oxley Homecare in NSW, Australia. 

We’ve all heard the jokes about not giving Grandma or Grandpa the remote control, or leaving them alone to program the DVD player, but what about technology that could literally transport Nonno back to the canals of Venice, or take Grandma back to the seaside village where she grew up, without her going anywhere? It’s real and it’s already making a big impact on how we look after and engage dementia care patients. Alzheimer’s Australia has been trialling various virtual reality technologies, and an app, throughout care facilities in Victoria, and it’s taking off. The impact on patient wellbeing, and carers, is dramatic too.

As more and more facilities give patients access to virtual reality helmets, kinect technology like that found on the X Box, or an app, the positive results and heart-warming stories continue to flood in. Patients can see a screen projected on a wall, on a monitor, or when they wear the helmet and select from various scenes including aquatic, travel, animals, relaxation and adventure. A trip to Bali, the sea, the snow, are all made possible again.  The sights, sounds, colour and 360-degree views provide a full immersion for the senses.


As a way of stimulating and engaging dementia patients, virtual reality is non-invasive, portable, and the the envy of most 15-25 year olds around the world!

Stories of the positive impact include residents who have been screaming or moaning stopping, or who cry tears of joy at the memories and sensory stimulation provided by different scenes they can live again through virtual reality. There are others who begin laughing again, and improvements in patient management are starting to become well documented among residents who get to try out a Virtual Reality helmet.

Trials of a simple screen projected Virtual Forest have even lead to a 64% reduction in the use of antipsychotic medication among participants. Engaging elements such as butterflies floating around, flowers blooming and rowboats have a calming effect. “If we can actually reduce the amount of medications that patients live on, they have a much better quality of life,” Dr Tanya Petrovich, a Tech Developer with Alzheimers Australia, told the ABC for a news report.

For caregivers, access to the virtual reality experience is helping occupy long hours when patients might have nothing else to do, or no stimulation, as well as manage patient behaviour. They can also see what the patient is seeing, so they’re able to guide them through the experience, and tell what they do or don’t like. 


Apart from the usefulness for caregivers, different aspects of the technology are also teaching those who don’t have dementia empathy.

A smartphone app, called the VirtualDementia Experience, is also being used in workshops to enhance the learning and increase compassion. Alzheimers Australia has reported a threefold increase in empathy and compassion markers from participants who used the interactive game, which is projected onto a wall through the smartphone or tablet with the app, compared to those who learnt the same information without the game.

The app has been around since 2013, with more features being added since then. Another app from Google, called Cardboard, is also available.

It might not be physically possible to take an elderly relative with dementia on a plane, or transport them to the forest or the beach, but their senses can be taken back there once again in the safety of their armchair. All it takes is a simple helmet to be worn on their head.