Sunday, 23 May 2021


There might be a good reason that nurses ask patients, "How are WE doing today?" The caregiving relationship is one that consists of two people who are 'in it' together. So why do we find it so difficult to understand that both of these people need care, not just one? 

                                                   Photo by Shahzin Shajid on Unsplash

Eva Kittay, an author, philosopher and mother of an adult daughter with severe disabilities, describes the perfect caregiver (when we are at our best with our own loved one) as a ‘transparent self’. In Eva’s words:

In the transparent self, the perception of and response to another’s needs are neither blocked by nor refracted through our own needs and desires. A transparent self attempts to intuit and respond to the other’s own sense or understanding of their own good, and does so for the other’s own sake. (2007, 53)

In other words, the ‘transparent self’ caregiver is not driven by ego or self-interest. She or he is driven by love and necessity. But Kittay also warns us against becoming immersed in another's needs:

An ethics of care is fundamentally other-directed, but it is an ethic that understands that our own well-being is never entirely independent of the well-being of the other. 

So how can we reconcile 'good care' for another with 'good care' for ourselves? Is the answer in the pages of women's magazines that scold us for not performing enough 'self-care'? No. I think the fundamental flaw with this individualistic idea of self-care is that it denies the care relationship. We shouldn't have to (and very often we CAN'T) remove ourselves from our loved one in order to perform some act of self-care or even self-preservation. No, we have to care for ourselves as we care for another. As we soothe loved ones, we must focus on soothing ourselves. We must pour two cups of tea, not say, "I'll have mine later." 

Of course there will be times that pain, anxiety or other forms of distress will make this dual approach to caring impossible - those times will be for caring that is 'asymmetrical' or one-way. But one-way caring can become a habit and that can cause damage to all concerned. Limping or favouring one leg can cause sore hips and arthritic knees in the 'good' leg. The same is true of asymmetrical caring. Folding self-care into caring is a shift that once practiced, feels like 'good caring'. Part of that equation is a realization that we are (usually) receiving care from our loved one, even if they are non-speaking. A calm presence or a squeeze of the hand are forms of solace to which we can assign great, personal meaning. 

Kittay also talks about how the 'completion of care' necessitates that care must be received (so good intentions are not good enough). How is care completed for your loved one? The more complicated question and urgent question is, "how is care completed for you?"

Friday, 7 May 2021


Mother's Day 2021 got me wondering how we learn to be good caregivers - what lessons about caring did we learn from our own mothers?  I asked friends and colleagues who are caregivers on social media to tell me what they learned from their Moms and this is what they said:

Susan: Fierceness... is that a word? My Mom has always been extraordinarily protective and supportive of us. God forbid anyone harm us or dare lay a hand on us, or say anything malicious. She would turn from a gentle, sweet-humoured lady into an assertive tigress in the blink of an eye. I carry forth that same fierceness, it has done me well in advocating for my handicapped child. I don't give up. I don't accept any sort of maliciousness or injustice. I too, become assertive in the blink if an eye. I'm 46 and fierce, while my mother has mellowed in her golden years. Well, unless you try to mess with one of her brood! 

Anchel: My mom always handled touch situations with grace. A lot of grace. 

Kara: Strength

Jana-Marie: How to question doctors and nurses and not be afraid to ask anything, as well as good hand washing with health issues.
Amina: Faith, my mom taught me that I can try to control my life and my kids' and plan to avoid anything that can harm them. But I won't always succeed. So when I feel hopeless and everything around me is going wrong, I should remember that we are all like leaves in the wind, yet we should have faith that we shall never be blown too far to come back. Miss you so much Mama.

Brianne: Always see the good in everyone and be your child's biggest strength, voice and cheerleader.

Kim: My mom was an RN and I witnessed her nurse my sister who had severe asthma... that was the foundation, but the fill was when she had the four of us and took on my cousins for a year... being open and doing your best!

Julie: My mother was (is) very nurturing... making sure we had warm pyjamas, warm feet, clean, cozy, loved. 

Marie: Mother's Day is always emotional and painful for me. My Mom is on the schizophrenia spectrum. What I learned from her is to question, cite, fact check, cross reference EVERYTHING - even things I think I know. To accept different neurologies as a part of natural diversity. To forgive myself - I did not cause her schizophrenia, nor did I cause his autism. To sift through hyperbole and hysteria and find facts. All of these often put me at odds with other parents, in particular other Moms. I have been through this type of grieving already and I am on the other side. I appear like a know-it-all, but I am not. I just had a very different mom and that changed me forever. 

Diana: My mother told me that there are no guarantees in life. That what comes our way, we have to accept, embrace and do our best. Skip the 'pity parties'. Everyone in life is dealing with something. She said to love unconditionally. She also told me that every day to do three good deeds without expecting anything back; that just in doing those things, it would make your day go better. It has helped in parenting and life in general. This was all said before I became a parent. 

Karen: Suffering builds character.

Tammy: To always look at the positive side. Things could always be worse than they are. 

Alison: I think one of the biggest lessons she taught me was to be patient and live with grace. I just wish that my natural temperament was more in keeping with her lessons because I find both of these things more than a little challenging. I fail often, but I never stop trying (a lesson from my Daddy). 

Paula: I learned everything from her. For when Nana went blind, she moved in with us and her sister, too. When Grampa got sick, out went the dining room table and in came the hospital bed... This is how I learned. 

Beth: My mom wasn't afraid to question a teacher or a doctor or whoever was "in charge". In an era when that just wasn't done. She liked to say, "I am the MOM, I am the ultimate authority on this child." And that has helped me greatly when I needed to do the same.

Me: I loved hearing about caregiving lessons passed down from mothers to daughters. And so of course, I've been reflecting on the lessons my own mom taught me. My mother died on August 16, 2018. She was a very feisty character who objected strongly to her own aging and dependency needs. My mom always worked in some paid job or other (she wanted her own money, hated housework and despised coffee parties) - she was completely different from every other mother on our street! What did I learn from Mom? I learned self-reliance, a deep sense of appreciation (she'd say, "Look at that sea. Just look at it!") and a passion for making wrongs right. I learned from her how to paddle a canoe and really laugh when life threw curve balls at anyone in our family. Most of all, I learned how to forcefully put one foot in front of the other, head down, to keep going every day. 

We all learn lessons of nurturing and caring from our mothers and today I want to celebrate that legacy. Happy Mother's Day, everyone!

Me and my Mom

Saturday, 1 May 2021


I remember helping my Mom brush her teeth - sometimes she was "too tired" or just not interested in doing her own personal care. Today it's my pleasure to host this informative guest post about how we caregivers can work together with dentists to ensure good oral health for our loved ones with Alzheimer's or dementia. - Donna

To say that everyday life for people with dementia is challenging would be an understatement. 

Whether a person is living with Alzheimer’s or any other form of dementia, their condition will eventually cause problems with their thinking, behavior, and memory. Since dementia progresses over time, those living with it will gradually forget to do things in their daily lives that are otherwise routine, like taking care of their oral care needs. 

People with dementia may forget to brush their teeth. Some may even forget how to use one at all, especially when their condition is at an advanced stage. It’s also not unheard of for seniors living with dementia to forget to remove or clean their dentures regularly. 

Considering how important oral health is to a person’s overall health, people living with dementia will need help with their dental care routine, and their dentists and caregivers are going to play a crucial role in that regard. 

Helping Dementia Patients Brush Their Teeth 

If you’re a caregiver for someone with dementia, you need to establish a dental care routine that they can get used to and follow day in and day out. 

If possible, you have to get your dementia care receiver to brush regularly, with or without your help. 

If your charge can still handle a toothbrush but forgot how it works, your best move is to grab your own toothbrush and demonstrate the entire process. While giving a tooth brushing demonstration, you would do well also to tell your loved one what you’re doing. That way, you’d be making your instructions both visual and audible, making the process easier for them to follow. If using their own toothbrush is out of the question, you will have to brush their teeth yourself. 

When brushing the teeth of a person with dementia, always: 

● Use a soft-bristled toothbrush—A toothbrush with rough bristles could prove to be uncomfortable. Then again, if even a soft-bristled toothbrush is too much for your charge’s delicate gums, a cotton swab or gauze wrapped around your finger should be a good enough substitute. 

● Do it with a smile—Any other expression on your face could make them feel threatened and lead to a temper tantrum or outburst. A gentle voice would help, too. 

● Inform your charge what you’re doing next—A person with dementia could get surprised if you suddenly shift—without a word—from brushing the front teeth to cleaning their tongue, resulting in confusion and even potential trauma. 

The Importance of Dental Visits 

Regular visits to the dentist are an integral part of oral care. However, in people with dementia, dental visits could prove to be tricky, as the whole experience could turn out to be overwhelming for them. Some of the things dentists need to do when providing dental care for dementia patients include: 

● Creating a dementia-friendly dental office environment—Better lighting, minimal noise, seats that allow their caregivers to sit with them, handrails for safety, playing music they like, etc. 

● Setting an appropriate amount of time for the appointment—A dental appointment for a person with dementia may take longer because everyone needs to proceed gingerly through the process to avoid agitating the patient. 

● Communicating effectively—Keep language simple, and explain your oral care and treatment plan with a smile. 

● Having extra patience—Attending to the dental needs of a dementia patient has its own set of challenges. Dentists need a surplus of patience and a good understanding of the condition to provide dental care without any incident. 

Things To Remember When Helping People With Dementia Clean Their Teeth 

Before dentists and caregivers dive into helping a person living with dementia with their oral care, there are several things they need to keep in mind. Those with dementia are more prone to dental issues because they forget to brush their teeth and because their mouths tend to dry up, no thanks to the medications they take regularly. Saliva is crucial to keeping tooth decay at bay, as it washes off sugar in the mouth and prevents acids from wearing out tooth enamel. Reduced saliva production in people with dementia means sugar and acids will have a field day wreaking havoc on their oral health. 

It’s also important to keep in mind that persons living with dementia will have a hard time communicating that they’re experiencing a certain degree of oral pain. After all, dementia can impact a person’s speech as the condition progresses. That makes spotting the following signs that a person with dementia is suffering oral pain extremely important: 

● Incessant moaning or yelling 
● Making faces while chewing food 
● Nonstop pulling at the face or mouth 
● Refusing to open mouth for cleaning 
● Hostile behavior 
● Not eating hot or cold food 
● Lack of sleep 
● Biting their lips and inner cheeks 
● Swollen cheek due to possible tooth abscess 

The dental care of a person living with dementia is often a collaborative effort between caregivers and dentists. By working together, caregivers and dentists can come up with a plan that takes care of a dementia patient’s oral care needs, which helps assure them of a better quality of life. 

About the Author 

Dr. Megan Peterson Boyle is the lead cosmetic dentist with Dental Studio 101 in Scotsdale, Arizona. She is focused on providing anxiety-free cosmetic dentistry services including invisalign, dental implants, dental crowns and cosmetic fillings. She enjoys spending time outdoors with her friends and family.

Friday, 9 April 2021


I think it was two years ago when a few of us got the idea of creating a retreat for caregivers. Not just any retreat, but one that could help participants understand how they have been transformed by their caregiving experience. Then, COVID19 hit and we asked ourselves, "Can this retreat work online?" I'm so happy to tell you that YES, The Caregiver Transformation Retreat is a reality and it's launching on May 6th. 

A project like this requires passionate, like-minded facilitators whose ideas and presentation styles mesh really well. Our dream team consists of me, Dr. Zachary White (my co-author of The Unexpected Journey of Caring and professor of care communications at Queen's University in Charlotte, NC), Dr. Aaron Blight (founder of Caregiving Kinetics and author of When Caregiving Calls) and Amanda LaRose, licensed social worker (owner and founder of Virginia Oak Counseling Services). Aparna Pujar, CEO and founder of Zemplee, is our technical partner. A software engineer by trade, Aparna is as committed to caregiver support and education as she is to Zemplee, her company that reimagines eldercare with artificial intelligence. Aparna has plans to offer a range of further caregiver training and support opportunities in an online community called Destination Caregiving. That's the site where you can find our retreat. 

The Caregiver Transformation Retreat is limited to only 20 participants. We will offer six one-hour sessions spread over a six week period between May 6 and June 10. Between live sessions, participants will complete short learning activities to deepen their understanding of what the retreat content means to them personally. Participants will share life experiences, laugh, perhaps shed some tears and finally emerge re-energised with a shifted perspective on moving forward with strength and purpose. 

Here is what's on the agenda of the retreat: 




For this inaugural edition of the Caregiver Transformation Retreat, we are offering the half-price fee of $249 USD to a maximum of 20 participants who give care to older adults. I hope you will consider joining us for this very special learning opportunity! You can REGISTER HERE. 

Monday, 22 March 2021

If You Thought Crip Camp Was Thrilling, You Will Love This Book

 I admit it, I've been feeling discouraged recently. I've been advocating hard for people with disabilities to be prioritized for COVID19 vaccines in Canada, but still haven't had success protecting our son. I was active every day on social media decrying the unfairness of Bill C7, the Medical Assistance in Dying amended bill that incredibly passed into law, now enabling disabled people and those with mental illness NOT at the end of their lives to access MAiD. Never mind that they aren't entitled to any services in the community that could offer them the support they need to LIVE a life with dignity and comfort. (Home care is not in the Canada Health Act, so not a right.) Sometimes it just seems an impossible hill to climb, protecting the lives of disabled people we love by changing the system. 

So maybe it was fate that I received a book in the mail last month with a letter attached that included a request for my review. The book is called Our Life Our Way: A Memoir of Active Faith, Profound Love and Courageous Disability Rights by William R. Rush and Christine F. Robinson. William "Bill" Rush was an American disability rights campaigner from Lincoln Nebraska. Christine Robinson is a Canadian occupational therapist who met and fell in love with Bill at the 1988 International Society of Augmentative and Alternative Communication in California. Bill was the conference keynote speaker who delivered his remarks using a computer speech device called a "Touch Talker" with head stick access. Bill Rush was a man who was born with cerebral palsy and grew to successfully complete a degree in journalism, author several books and change the course of disability rights in America. 

I have a special place in my heart for this book because our son Nicholas is also a user of AAC or augmentative and alternative communication. Nick uses a communication book with words scans that his helpers read. Nick says "Yeah" for the word he wants. But throughout his school years, Nicholas listened to his word choices via headphones and a Dynavox computer would speak his thoughts. Nick had switches to control the computer built into his wheelchair headrest but scanning with head movements through so many possible words to get the right one was tiring and slow. Now, he prefers the book and communication partners who can use a combination of strategies to understand his thoughts, ideas and preferences more efficiently. 

Like other founders of the movement for disability rights in the USA, Bill Rush was a trailblazer. The film "Crip Camp" gave me a riveting glimpse of what obstacles lay in Bill's path in the 70s and 80s - obstacles that he overcame with steely determination and a talent for creating wily strategic pathways to accessing freedom and dignity for himself and others with disabilities. In Bill's kitchen hung this sign for any visitors or health aides to consider: 

Our Life Our Way is about love and freedom. But it's also about allies and faith. And all of these themes intertwine so entirely that living by Rush's rule would be impossible without all of them. "Servant leadership" is the term that Bill coined to describe his approach to advocacy. Church for Bill and Chris was a wellspring of support, hope, belonging and allies. "My Church family at First Baptist is the first place in my life where I have felt a sense of belonging outside of my family," Bill remarked to Chris. Later, when the couple fought hard to marry without giving up Chris' employment and all their assets in a deal to keep attendant care for Bill, members of the church filed in to the government hearing as a show of community solidarity, expertise (the group included a lawyer) and witness. There will be no spoilers here - you need to buy this book. Read it to learn the couple's fate, but also to savour their pure sense of youthful and thrilling optimism and their unwavering vision of inclusion in combination with the power of community and commitment to God. 

There's so much in Bill and Chris' story that makes this book one for our times. Bill's apartment neighbour was a KKK conspiracy theorist who was filled with hate. Imagining such a character might have seemed crazy five years ago, but not today. Bill had to use all his wits to access help from the law to protect him from this maniac. In the face of white supremacy, racism and ableism, many disabled people today are not so lucky. 

I learned so many lessons about successful advocacy from this book. Most of all I learned about an American hero I had never known about before. And I am filled with hope that if we apply Rush's Rules today, we can come back strong because of our faith, our love, our study of the system and our allies. I feel so much better and I'm going to post Rush's Rules in Nick's room tomorrow. 

Saturday, 13 March 2021

RINGS OF A PLANET: Caregiving in a Natural Disaster

Last year, my friend and colleague Vickie Cammack and I co-wrote a piece about caregivers as first responders in natural disasters. We wrote: "Canada’s ability to successfully respond to the climate crisis depends on the freely given, natural care provided by family, friends and neighbours. These caregivers (distinct from professional care providers) are the true first responders and the bedrock of our individual and collective safety and security."

In February of this year, a terrible winter storm caused widespread power outages in Texas. Diane Stonecipher is a resident of Austin and this is her story of caring for her medically complex son through life-threatening cold at home, without electricity. Thank you for sharing, Diane. I am so glad you are all OK now.  

The thing about living on the edge is that it becomes a place that you adapt to. You do not always feel the fragility on a day to day basis until you are pushed beyond the boundary of it. This rarely comes with a warning. Being on the margins, on the edges of what people can see, takes many forms. For purposes of this writing, it manifests as the edge of medical/cognitive fragility. When you are medically or cognitively fragile or you care for someone who is, the entire society functions on a parallel plane to yours. The worlds are blended in parts, but make no mistake, the dominant place is on the periphery. It takes a lot of energy, focus and intention to stay balanced out there. It also takes resources, support and some luck. 

When COVID arrived, the previously somewhat comfortable edge, became precarious in relation to supplies and physical proximity to others. Words I had never uttered, supply chain and food scarcity, became full-time obsessions. My usual subscribe and save subscriptions were gutted; no diapers, wipes, dry pads beyond my already impressive stockpile. Medication shortages with dire consequences as well, access to nourishment that cannot be readily substituted for. I had no place to put an extra fridge and no energy to scour any harder than I already did. In the space on the edge, which is already narrow and slippery, any glitch has repercussions. That said, acclimated to the edge, one relies on resourcefulness, minimizing expectations and a measure of resignation. 

In a bit of irony, as we righted the circumstances and hunkered down in the pandemic, I was feeling a little less isolated and soon, settled on the ledge of the edge again. When the winter storm warnings came for snow and cold temperatures, my concerns were mostly keeping the house and our medically fragile son warm. My work would be cancelled, my husband could work from home. I had food, water, plenty of batteries, candles, lanterns and blankets. We did all of the right things for our pipes and plants and went to sleep amidst gently falling snow. 

At approximately 3:00am on February 15 the bleep of the power cutting off woke us up. Not too concerned at this point, we both went back to sleep and I awoke @ 4:30. There was a lot of snow, so it was oddly “light” outside. Nonetheless, there was no heat and the house was cold. There was water pressure enough to put a kettle on the gas stove. I made coffee, had cold milk, energy bar and scanned the street for lights anywhere. At that time, there were lights behind us, but not to the south of us, so I had hopes that this was a temporary outage, and thankfully, the snow had stopped. I made our son’s breakfast as best I could with light from a camping lantern and lamented the dead computer, land lines and cell phone that needed charging. 

 At first, it all just seemed inconvenient. I would not be able to put his warming blanket on him, heat up his food, turn his music on or use the Ipad. Obviously we were not leaving the house; we would adjust to the cold and quiet and get the phone charged to see what was happening. Soon enough, it was obvious that this outage was not temporary and the end of it was at least a day away. Immediately I was making a mental inventory of what we would need to provide our son’s care and keep him warm. Feeding would be the same, toileting more challenging than usual, without water, no bathing, and no end point. The house continued to become colder and the forecasts for the next several nights in to the single digits. 

I was freezing, but without body fat, ability to move and the temperature regulation center in his brain, our son was our singular focus to keep him warm. Our neighbors offered a room in their house and we toyed with the idea of moving him and a large amount of stuff over there, just to be warm. Alas, they had no water and their power subsequently went out as well. We thought about trying to find another place to be, where there was power, but the roads were not passable. The following day, learning that the power was not returning, the roads slightly improved, we thought about it again. The temperature in the house was below 40 during the day and I feared hypothermia. We gathered his food, his meds, his toileting items, his foams for sleeping and a bowel program and thought about risking it. What if we forgot some thing and could not return? What if pipes busted where we went? What if our own pipes burst while we were gone? Looking over the 2 pages of supplies written on loose-leaf paper, we decided to stay. Too many unknowns for a 50/50 shot at success. 

 Once that decision was made, although some doubt persisted, we sunk in to what we always do, put one foot in front of the other. We had the environment that housed our usual rhythm, flashlights, a borrowed sleeping bag and all of the supplies used in any day. The house was cold enough that we lost nothing from the fridge, we kept the pipes dripping and had a gas stove to light. Our radius was about 400 square feet and we maximized its utility. In a sense, we were lucky because our son eats pureed food from a spoon and drinks from a syringe. He does not require deep suction, just a bulb syringe and CPT. He does not have a tracheostomy. 

For our son, lack of heat is life threatening. My toes and fingertips were numb, layer upon layer, there was no getting warm. His daily needs did not let up due to a power outage. He still needed to be moved hourly, was incontinent, had a bowel program, needed changing and 6 small feeds. He still had no way to understand what was happening and for someone whose preferable ambient temperature is about 70 degrees, adjusting to 34 was an all-out effort on all of our parts. He stayed wrapped in a sleeping bag, during the day, warm but unwieldy to transfer and feed. Five blankets at night with my husband, only after the fact, admitting to his fears of smothering. No nightly warm bath; the first time he has missed one of those unless he was in a hospital. 

Days and nights blended together and the only redeeming thought was that sooner or later the power would return. As each day and night passed and our fatigue grew. We knew for certain that our utilities would eventually be restored, hopeful that no pipes would burst in the meantime, we let time lose its grip. In this space, the capacity for gratitude became an essential tool for sanity. When this was over, we would return to our normal place on the edge. The place we have acclimated to. I could also see and feel the suffering of all who would not even have this comfort. Those in war-torn countries, refugee camps, homeless, under-housed, crowded beyond capacity; we were indeed the lucky ones. In our own city and state, people would die cold, alone and in the dark. Family and neighbors would feel helpless and police and firefighters in positions of deep sadness, I suspect. 

I hope that something like this does not happen again, but I doubt that is a given. If it is not a winter storm and power failure, it will be something else. There are many, many people living on the edge. It is not just that we don’t see them, it is that because of that, we don’t adequately address their needs during these circumstances. Just something simple like someone asking why we did not have a generator, as if that would have mitigated the situation, was almost hurtful. 

The thing about the edge is that it is not a fixed place. More like the rings of a planet. The only view you have is the one that you see. To steal the phrase, a view point is just a view from a point, is most apt. With all of our technology and inordinate wealth of all kinds of resources, we need to remember that the rings are part of the planet.

Monday, 8 March 2021

Happy International Women's Day, Caregivers


March 8 is International Women's Day and this year, I would like to celebrate the women in our families who nurture us, love us, feed us, drive us, shop for us, and rescue us from mishaps every day of our lives. This year has been especially hard and has demanded a lot of women. We've stepped up and put care first in spite of great challenges with family, work, isolation, illness and all that the pandemic has put in our path. 

What if 3 Wise Men were Women?

What would have happened if it had been three Wise Women instead of three Wise Men?
They would have asked directions,
arrived on time,
helped deliver the baby,
cleaned the stable,
made a casserole,
and brought practical gifts. 

Our mothers do all these necessary things for us, but so do our girlfriends and our sisters. Today, let us celebrate all the kindnesses and all the 'love in action' that women give. These tasks will never be headlines in the newspaper, but as the writer Ann-Marie Slaughter said, "Domestic work makes all other work possible." 

Happy International Women's Day to all who care for others - you are our role models, our teachers, and our loving friends.