Thursday, 8 October 2020


You may not accept the title of caregiver. Regardless, you have cared for another, enduring ongoing uncertainty and self-doubt, amid evolving and unwanted relationship changes, and changing networks. It has become a part of you. To deny this aspect of your life is to deny you. You discovered these things about yourself not because you are a caregiver, but because you found parts of yourself in caregiving.

Your pre-caregiver life may now feel oddly unfamiliar, like looking in family albums at a person that resembles you but also feels like a stranger. When you began this journey, you may have convinced yourself that it was only temporary. Care would be enacted while you could, until someone else stepped up. Or when life returned to normal. Here you are, weeks, months, or years later. Though you didn’t want to go on this journey, what you have seen and what you are continuing to experience cannot be denied. The day-to-day realities of being with another in ways you had never experienced or even conceived of is now indelibly part of how you see yourself. It’s part of how you talk about yourself. It’s now part of how others view you. This transformation is an accomplishment—not an accident.

It’s part of how you talk about yourself. It’s now part of how others view you. This transformation is an accomplishment—not an accident.

Along the way, you have had to reconcile why you’ve felt disappointed by those closest to you. You’ve felt isolated and alone, excluded and offended by the beliefs and values others take for granted. You’ve been hurt by others’ (non)reactions to you and your situation. But you’ve also developed your own voice. This kind of authenticity is deceptive because it makes it appear as if it has existed for all times. But it hasn’t. It was earned.

Just as there is no clear “beginning” to the caregiver role, there is no clear “ending” point. It can’t be marked by the end of caregiver responsibilities. That would be like saying parenthood ends when your children go away to college. Or that your love for your spouse or partner immediately stops after their death. There are no clear ending points when love and care and you—your sense of who you are and what you have become—are involved.

There is no going back to the ‘before-caregiving you’ because caring changes us permanently and fundamentally. Our ‘old operating systems’ don’t work for our caregiving lives so slowly, we begin to reinvent and replace them with new ones. 

In caregiving, what has died in you? What has grown? 
If you would like to share your reflections on personal transformation as a result of caring for someone, join our chat at on October 30 from noon-1pm. You will be welcome to ‘unmute’ to share, or type into the chat box or…just listen. All are welcome.


What’s Died in You, What Has Grown?

Friday, October 30th, 12 pm EDT

When you become a caregiver, everything changes – daily actions, beliefs, hopes, expectations and connections to others. In this group session, we will explore what happens to us when we care and turn toward—not away—from our loved ones, and how deep care for another transforms us and our relationships. We will ask, what grows in us, what dies?

This event is hosted by, a support platform for patients and caregivers. I'm a 'Pro' there which means I offer free live learning and sharing events from time to time and offer support to caregivers in the online forums. If you would like to join for this free event, click the register link below. Huddol operates a bit like Apple - you register with a credit card because there are some paid services IF you choose to buy them. But everything I offer there is FREE so there will never be charge to your card unless you choose to order something else. I hope you can join us! 

Register >

Wednesday, 30 September 2020

OUTSIDE IN THE COLD: Caregiving During Covid19

Caregiving during Covid19 has put a huge, extra strain on caregivers. It's hard enough walking the journey of illness or disability with someone you care deeply about, but the pandemic has amplified our pain by separating us from our loved ones in hospital or long term care. We're forced to wait in the parking lot or outside the window while our loved ones try to manage finding their way down unfamiliar halls to a clinic appointment. If we're lucky, the physician or nurse will place a call to enable the caregiver to join in a consultation meeting over the phone. Sometimes, all we want is to speak to a loved one or a nurse - especially if a loved one is an inpatient and we have urgent questions or information to deliver. Maybe just need or want to say "I love you." Performing our normal roles of navigator, comforter, keeper of health histories, reporter of symptoms - we are attempting to carry these out from outside, across what feels like a wide distance. It's as if we are knocking on the door, softly at first (because we know people inside are so busy fighting an invisible enemy). But then, worry grows and grows until weeping, we abandon all social conventions and bang on the door till our knuckles bleed. 

I know this feeling. Our son Nicholas lives in a small (wonderful) medical group home. Until recently, we could visit only through triple pane windows and then a little later, outdoors with a plexiglass sheet between us. Just over two weeks ago, rules were relaxed to enable indoor visits (with masks) by designated family members or best friends. That privilege has not extended to me attending important clinic appointments with my husband. I've learned first-hand what it's like to help, but not help - to be shut out of my natural caring role for my spouse. We've been married for 43 years and it drives me to distraction not being able to support him in person the way I feel that I need to.

A 'stress doodle', done in the car, outside the hospital.

The call from family members to be labelled 'essential partners in care' during Covid zero visitor policies has been heard in some parts. Last week, an Ontario private member's bill called the #MoreThanAVisitor Act passed the second reading. If passed in provincial parliament, all Ontario patients in hospitals and long term care homes will have the right to designate one or more 'essential partners in care' who will be considered not as visitors, but as part of the care team.

In the US, many states allow designated family members at the bedside of loved ones in long term care. Here's a handy interactive map showing whether states enable family presence in hospitals and long term care. 

Family caregivers have led the charge to be rebranded from 'visitors' to 'essential partners'. The work we do to support the life and wellbeing of ill, elderly or frail loved ones may have been invisible before, but without our labours of love during this pandemic, patient outcomes have proven to be far worse. So now, finally, the realization is dawning on policymakers that patients need their families and front-line staff require the second set of hands that come with our presence. It's about time.

Monday, 14 September 2020



Working with Aging Adults with Significant Vision and Hearing Loss ::

“It was a tenet of my critical care training. Family members were an integral part of the care that we delivered. They keep us accountable and remind us that our patients had rich lives outside the hospital. But more than that, it was often the relative who would clock a subtle change, alert us to a medication allergy, bring in the blanket from home or the food that would spark our patient to start eating again. The attending physicians who trained me taught me to recognize the way my agitated patients calmed when a loved one entered the room, the way a hand on a shoulder could cause a rapid heart rate to slow, or how a delirious patient would smile when they heard a relative calling their name. All of that has changed. It has been nearly six months since visitor bans went into effect in hospitals throughout the country. Just last month, a new fleet of interns joined us. They are learning how to be good doctors in a world of masks and distance and isolation. They do not know what it is like for the hospital to feel alive with family members in our hallways, cafeterias and waiting rooms. I want to teach them how much it matters, but as the months go by, I am already feeling a shift in myself. Our language has grown more casual. We talk about how a patient ‘acted up’ or ‘gave us trouble,’ phrases I would never use if that patient’s husband or wife were standing in front of me. The cost of this policy has gone far beyond those with the virus. It is that moment overnight when I did not think to call the family. It is in the many quiet hours my patients spend alone, the extubations that happen now without a loved one at the bedside, our patients waking from the nightmare of intubation to find themselves surrounded by the masked faces of strangers. It was nearly 4 a.m. by the time we called the family on that recent overnight, but they came quickly, hair still mussed from sleep, surgical masks in place. Security verbally screened them for COVID-19 and let them up even though it was outside visiting hours, because we were worried that our patient would not make it through the night. The nurse set up two folding chairs for them next to the patient’s bed. They held his hand and talked to him in ways that we never could. And slowly, as the carbon dioxide cleared from his blood, my patient started to open his eyes. And when he did, he was not alone.”
— Daniela J. Lamas, writing in The New York Times, is a critical
care doctor at Brigham and Women’s Hospital in Boston.

Sunday, 6 September 2020



Yesterday, I was driving to visit Nicholas, listening to the radio as I always do in the car. On air was an episode of Krista Tippet's podcast ON BEING. Krista was interviewing an author about the idea of joy and how it differs from happiness. "The millstone of happiness" is a turn of phrase that stayed with me. 

We are told that happiness is a birthright, that it is a constant state of being that we should aspire to, regardless of the circumstances of our lives. If we are not happy, we are lacking. This idea of happiness is hollow, inauthentic and ultimately unsatisfying not to mention unachievable. It is a millstone dragging us down. For caregivers, chasing happiness is a zero sum game.

Think instead about joy. Joy is fleeting, it can be experienced amid (or even as the result of) suffering. Joy is authentic and it does not deny the full range of human experience. Joy is a tougher sell because it is complicated, but it is potent and more related to a kind of ecstasy. 

It struck me that joy is related to hope, but happiness is not. Happiness in today's world seems closer to hopelessness. We caregivers know this. 


“Our mission is to plant ourselves at the gates of hope — not the prudent gates of Optimism, which are somewhat narrower; nor the stalwart, boring gates of Common Sense; nor the strident gates of self-righteousness, which creak on shrill and angry hinges; nor the cheerful, flimsy garden gate of “Everything is gonna be all right,” but a very different, sometimes very lonely place, the place of truth-telling, about your own soul first of all and its condition, the place of resistance and defiance, the piece of ground from which you see the world both as it is and as it could be, as it might be, as it will be; the place from which you glimpse not only struggle, but joy in the struggle — and we stand there, beckoning and calling, telling people what we are seeing, asking people what they see.”

– Victoria Safford

Sunday, 9 August 2020


Because I do not have the metaphor for Sadness" by Blessing Omeiza Ojo  |Praxis Magazine for Arts & Literature


I'm not gonna lie to you - I am exhausted. Not just tired, but a 'Covid' kind of dispirited lethargic kind of tired. It comes not just from giving care, but from monotony and loneliness. I feel a heaviness and absence of inspiration that usually gives me energy to write, to cook, to hike and to read. 

I am betting that a lot of us feel this way. So, I have decided to find things that inspire me back to my old self - to 'snap out of it' and find beauty in life again. My last post about a walk on the Camino di Santiago was a nod to this urge. But now the urge has transformed into intention. This morning I've decided to find words or images that  'bring me back to myself' and to share them with you here in The Caregivers' Living Room. As it happens, a friend who is a priest in the Church of England and a poet himself, Mark Oakley, posted this gorgeous blessing by the late Irish Catholic poet John O'Donohue on facebook last night. It is just the medicine that we all need. Let every reader  "Return to yourself, having learned a new respect for your heart and the joy that dwells far within slow time."

For The One Who is Exhausted, A Blessing 
by John O'Donohue

When the rhythm of the heart becomes hectic,
Time takes on the strain until it breaks;
Then all the unattended stress falls in
On the mind, like an endless, increasing weight.

The light in the mind becomes dim.
Things you could take in your stride before
Now become laborsome events of will.

Weariness invades your spirit. 
Gravity begins falling inside you.
Dragging down every bone.

The tide you never valued has gone out.
And you are marooned on unsure ground.
Something within you has closed down;
And you cannot push yourself back to life.

You have been forced to enter empty time.
The desire that drove you has relinquished.
There is nothing else to do now but rest.
And patiently learn to receive the self
You have forsaken in the race of days.

At first your thinking will darken
And sadness take over like listless weather.
The flow of unwept tears will frighten you.

You have traveled too fast over false ground;
Now your soul has come to take you back.

Take refuge in your senses, open up
To all the small miracles you rushed through.

Become inclined to watch the way of rain 
When it falls slow and free.

Imitate the habit of twilight;
Taking time to open the well of colour
That fostered the brightness of day.

Draw alongside the silence of stone
Until its calmness can claim you.
Be excessively gentle with yourself.

Stay clear of those vexed in spirit.
Learn to linger around someone of ease
Who feels they have all the time in the world.

Gradually, you will return to yourself,
Having learned a new respect for your heart
And the joy that dwells far within slow time.

Sunday, 2 August 2020

And Still, The Road Stretches On...

Recently, my co-author and friend Dr. Zachary White and I have been chatting 
about caregiving with the distinguished Assistant Professor of nursing at Loyola 
University (New Orleans), Dr. Warren Hebert. Warren is an inspiring leader 
in the areas of family caregiving and home care. Our chat led us to topics such as 
the 'sacred space of home', the need for rituals and rites to mark the caregiver 
journey and finally, we discussed metaphors for caring. Warren introduced us to 
a poem by the philosopher David Whyte titled 'Santiago' as one example of metaphor. 
Whyte's niece had inspired him to write the poem by walking the ancient 'Camino 
de Santiago' trail all the way from St. Pierre du Pont in France, across northern Spain 
all the way to Finisterre (or, literally 'the end of the earth, where earth meets the sea'). 
Thousands of pilgrims walk this trail every year for reasons to do with contemplation, 
prayer and inspiration. 

In 2015, my husband Jim and I walked a tiny part of the Camino in northern Spain. 
We only had four days to walk, but I located a tour company that arranged for our 
bags to be transported to a different hotel each day as we were a little too old to 
carry heavy packs. I did reflect on my walk as a metaphor for my life of caring. 
Steep hills led to gorgeous views. Valleys obscured the path till a sunbeam revealed it 

And finally, we came to the sea - an opportunity to gaze 
at our reflections in the water and I remember thinking, "I made it."
SANTIAGO - by David Whyte
The road seen, then not seen, the hillside
hiding then revealing the way you should take,
the road dropping away from you as if leaving you
to walk on thin air, then catching you, holding you up,
when you thought you would fall,
and the way forward always in the end
the way that you followed, the way that carried you
into your future, that brought you to this place,
no matter that it sometimes took your promise from you,
no matter that it had to break your heart along the way:
the sense of having walked from far inside yourself
out into the revelation, to have risked yourself
for something that seemed to stand both inside you
and far beyond you, that called you back
to the only road in the end you could follow, walking
as you did, in your rags of love and speaking in the voice
that by night became a prayer for safe arrival,
so that one day you realized that what you wanted
had already happened long ago and in the dwelling place
you had lived in before you began,
and that every step along the way, you had carried
the heart and the mind and the promise
that first set you off and drew you on and that you were
more marvelous in your simple wish to find a way
than the gilded roofs of any destination you could reach:
as if, all along, you had thought the end point might be a city
with golden towers, and cheering crowds,
and turning the corner at what you thought was the end
of the road, you found just a simple reflection,
and a clear revelation beneath the face looking back
and beneath it another invitation, all in one glimpse:
like a person and a place you had sought forever,
like a broad field of freedom that beckoned you beyond;
like another life, and the road still stretching on.

Wednesday, 22 July 2020


I’ve been an admirer of Tena L. Scallan’s advocacy work on behalf of caregivers for years. Tena is a natural born nurturer who combined her talent for entrepreneurship with her care experience. Tena IS The Ultimate Caregiving Expert - you can see it in the love and determination in her eyes. Here is Tena’s guest blog post.

I would like to introduce myself and tell you about my website The Ultimate Caregiving Expert.  My name is Tena L. Scallan and I create caregiving solutions for busy professionals.  I provide Virtual Assistance to help lighten the load of entrepreneurs who are trying to run their business while taking care of a loved one at home or in long-term care.  I also provide Caregiving Coaching/Consulting Services and sell products that caregivers need via my resource-filled website.

I have a collaborative problem-solving approach to family caregiving. I put myself in the shoes of caregivers who may be busy adult children of aging parents/relatives, caregiving professionals, entrepreneurs or executives and I provide a range of solutions to challenges that seemed at first, impossible to overcome.

Why did you decide to be a caregiver?

As "The Ultimate Caregiver" I relate to a problem and am passionate and knowledgeable to fix it and feel that I have a moral obligation to share my experience with the world, dedicating my life to helping others in need.  I would love to assist the world with all aspects of caregiving. My mission is to be a strategic partner with caregivers by applying my expertise, knowledge and experience, while providing innovative and cost-effective solutions to those facing challenges in health care today.
The implementation of my mission involves listening closely to my clients, taking the time to learn about their needs, and understanding their environment. Through my work with hundreds of clients, I have established a reputation for my capabilities in private and healthcare environments.  

How did you get your experience?
In the beginning, I grew up in a family with many health problems. I was always in doctors’ offices, hospitals and other medical facilities.  I started my passion for caregiving as a young child, then became a candy striper at age 14.  After I finished school, I worked at a Home Health agency for 7 years, then ran my own homemaker/companion service for 12 years and worked in every department of a hospital for 6 years. I gave up my business because of the growing rules and regulations in caregiving and decided to do something about it.  My family & clients called me The Ultimate Caregiver and the name stuck with me throughout my life. 

Why did you write “The Ultimate Compassionate Guide to Caregiving”? 

It started off as a training manual for my employees to follow as if I were doing the work myself. I saw a powerful need to educate family caregivers in the home.  The book came from my many years of experience and I mirrored it to what I taught my employees. It is the must-know of caregiving.  Furthermore, my book is an encyclopedia of information that teaches families and caregivers how to care for their loved ones.  Also, I have broken the book down on my website to provide each chapter in a series of quick e-books to help with many caregiving problems that can arise.

Caregiving and COVID

Caregiving today has become so confusing!  There is so much information to digest. I have come up with a post that 25 other caregiving experts has offered their advice and knowledge on COVID to help all caregiver called How 26 Caregiving Experts Help New Caregivers With COVID-19Caregiving Experts and Caregivers are in unprecedented times with a disease that has no cure and unfortunately, we are in a new normal with this.  They can be overwhelming enough without Covid-19, but not impossible.


You too can be The Ultimate Caregiver by having patience, being gracious, and staying organized.  I am here to help you in anyway possible.  Caregiving can happen at a moments notice and you may not know what to do at first.  My website was created to help with anything caregiver related.  Thank you for the opportunity to tell you about myself.