Monday, 21 August 2017

The Eclipse, The Future and the EQ of Caring

Something about this week's solar eclipse has me thinking about the future of humanity. The sun strangely disappearing on Monday reminds us all that anything can happen. We are, after all, at the mercy of the natural world. The eclipse seems like a good reason to imagine future societies and the role of caregivers in them.

As fate would have it, I stumbled upon this article about how being smart will mean something completely different in the future. According to this author, intelligence will be redefined this way:

"What is needed is a new definition of being smart, one that promotes higher levels of human thinking and emotional engagement. The new smart will be determined not by what or how you know but by the quality of your thinking, listening, relating, collaborating, and learning. Quantity is replaced by quality. And that shift will enable us to focus on the hard work of taking our cognitive and emotional skills to a much higher level.
We will spend more time training to be open-minded and learning to update our beliefs in response to new data. We will practice adjusting after our mistakes, and we will invest more in the skills traditionally associated with emotional intelligence. The new smart will be about trying to overcome the two big inhibitors of critical thinking and team collaboration: our ego and our fears. Doing so will make it easier to perceive reality as it is, rather than as we wish it to be. In short, we will embrace humility. That is how we humans will add value in a world of smart technology."
Interesting, isn't it? Looks to me like caregivers are going to be the thought leaders of the future - recognised as the fountainheads of creativity and emotional intelligence that we are. It's about time.

Sunday, 20 August 2017

FRIENDSHIP is in the Heart of Every Caregiver

I'm up at our family cottage on a lake in the mountains of Quebec.  Yesterday it rained, so naturally I gravitated to the bookshelf in the corner by the fireplace.  I found this 1910 copy of "The Gift of Friendship and Other Verses".

Let me share with you one verse that perfectly captures, for me, the reason I write this blog:

Comrades All!

The Road is long, the way is steep,
The path sometimes is hard to keep,
There's sun and rain upon the way
We travel o'er from day to day.
But Life's ahead what e'er befall,
And come what may, we're comrades all!

Comrades all in joy and pain,
Comrades in the sun and rain,
Comrades in the work we do
Day by day the journey through.
Here's my hand beyond recall
Yours "for keeps" - we're comrades all!

We are bound together by our caregiving experience and, I believe, made better for it.  So, here's my hand beyond recall, yours 'for keeps' - we're comrades all!

Saturday, 12 August 2017


Yesterday I read a fascinating blog post by the wonderful Denise Brown, founder of  Her piece is titled Dressing the Part: Family Caregiver, MD. It argues for caregivers to wear a lab coat when we accompany loved ones to medical appointments.  Brown is fed up with clinical professionals not treating family caregivers as the care providers that we are. 

I posted Denise's piece on my Facebook page for caregivers and the conversation that ensued was fascinating. Read the exchange.

Kim #1: I think it would be better to consider the opinion of the people we are caring for. My first instinct is that some would feel demeaned by this. (Although as the author states, we have the perfect right to a badge or lab coat)

Kim#2: I simply don't work with anyone who doesn't respect my position as a critically significant collaborator when discussing treatment and health care issues .

1. Talk to and gather info from the patient first
2. Talk to and gather info from me.
3. Review any info I bring from any other significant caregiver or collaborator
4. Everyone answer any questions posed letting the patient attempt the answer first but also giving accurate info even if it directly conflicts with patients narrative.

I'm not about identifying my position in my son's life . He would feel like I'm disclosing and I hesitate to do that unless absolutely necessary .
I am all about telling the dr who I am once behind closed doors.
If this were my aging parent or a spouse I might feel differently and I like the concept as a whole as far as its intent.

The Caregivers' Living Room So interesting and complicated balancing respect for our young adult children with disabilities (and it's no different with my Mom btw) with getting the narrative right with the clinical team. Currently, I'm working on a research project that's developing an app to help young adults with disabilities transition from peds to adult care and have a voice in their own care. It's about education, advocacy and supported decision making. This is really, really tricky. One doctor on a conference call asked, "What if a parent is actually the one using the app in the trial - what if the parent can't let the youth go it alone in the health care system with the app because the parent can't let go or step back? Won't that skew the results of our study?" Another doctor was so embarrassed that the question had been asked because he thought I would be offended or upset. Not at all! I said, "Letting go of our kids' health care is the LAST thing we want to let go of - it's the most important thing and we can't let our kids with disabilities fail in the system for the sake of a research study. So, it's a very good question." I want my son (and my Mom!) to be front and centre - I want them to tell their own story. But as you said, often their story is not accurate. So a lot of diplomacy is required. If I wore a lab coat (and there is a lot a Iove about that idea!), wouldn't that be a way of silencing or diminishing the voice of my son/Mom? It's a tricky balancing act, that is for sure.
Karen: I've seriously considered buying some scrubs and a name tag to wear when I take my parents to their appointments. I've wondered if I would be treated differently. I feel like doctors don't know how to include caregivers. Sometimes we're invisible and sometimes we're scolded for not getting our parents to be compliant. Doctors feel they can say things to us that they'd never say to their patients. If we caregivers admit we're having trouble with compliance there is no understanding. "Why isn't she doing her exercises? It shouldn't be that difficult to get her to do it?" There's a tone that's used that isn't used when they're speaking directly to the patient.

Lisa: Not sure if I would wear a lab coat to appointments, I would feel a bit cos-play doing that. However, I DO dress up for my daughter's appointments which is cos-play I guess! I dress the part of a doctor. I wear nice dress pants and a dressy top and I put my hair into a low ponytail (which I have observed most female doctors seem to do if they have longer hair) and wear light make up. My everyday wear is yoga pants so that is a change for me! I have noticed I get treated with more respect when I am dressed up.

This conversation is fascinating. When I gave a book talk a couple of years ago, a woman of colour put up her hand. She said, "You've told your story of caring, but I would like to know who will tell my story, which is very different from yours. Do you have to put on a business suit to bring your son or your mother to the ER? I do. Because if I didn't, the staff would assume that I am homeless." Everyone (including me) sighed and we shook our heads at the injustices of life for many in our midst. There are optics of power - some that we can control and some that we cannot. Maybe power dressing is a good thing for all of us, but when we had this exchange at my book event, we all felt the double unfairness of being vulnerable AND powerless at a time of need.

Do YOU dress differently for doctor appointments with your loved one? Do you think we should be identified by a badge or uniform as part of the treatment team? How can we signal our important role without diminishing the dignity or independence of our loved ones? 

Wednesday, 9 August 2017

"Just Let Go" Doesn't Work When a Loved One is Medically Complex

Jessica McLean is a writer who cares for her Mom. I asked Jess to write about the challenges of letting go and trusting others with her Mom's care. "Just letting go" doesn't work when a loved one is medically complex, as Jess learned.

A few years ago, my mother ended up in the ICU with sepsis and kidney failure. She spent over 10 days there, and I was trained by nurses before we left the hospital on how to administer IV antibiotics through a port they had inserted into her chest, and how to empty the nephrostomy bag which was connected to a tube that had been inserted into her kidney. It was a scary time, but the doctors felt like I was equipped to manage the rest of Mom’s care from our home, especially with her on the mend and a schedule in place for follow-up appointments and procedures.

Back home, my family came by intermittently to see Mom, including my brother who tried to convince me he could give mom her IV antibiotics if need be. “Oh yeah, I can do that,” he said one afternoon while stopping by with his girlfriend.

I replied “No, it’s much more complicated than that. Nurses had to train me how to do this, the cleaning of the site, heparin shots, saline flushes, how to set up a drip IV and prepare the bag of antibiotics. The only person doing this is me until I can show someone else how it’s done.” Not to mention it was an every-four-hour antibiotic, so we were on a strict schedule including waking up multiple times in the night.

My brother, 24 at the time, simply couldn’t understand that. “Please,” he said, “I work for a medical supply company, I see this stuff all the time.” He was literally convinced in his mind, though he spent little to no time on the actual nursing care Mom needed (even when she wasn’t almost dying), that now in her extremely delicate state, he could step in and have his hand at administering IV antibiotics without any training.

My dad and one of my sisters who was there were able to back me up, but the worst thing about that whole interaction was, in saying ‘No’ to my brother, the conversation transformed from a conversation about Mom’s care to an all too familiar accusation about how I was too controlling and needed to learn to “Let go!”.

Unfortunately, that wasn’t the first or the last time I would become infuriated with the lack of care and understanding the rest of my siblings had for Mom’s needs. Showing them how to clean her properly after a diaper change to prevent UTIs, or what to watch for as far as seizure activity was concerned, or how she needed to sit up right all the way to be able to swallow food correctly - it was extremely hard over the years for the kids (all in their 20s) of a parent to accept that simply being blood related didn’t make them qualified for the skilled nursing care Mom required.

It felt as though they often mistook my hyper-detailed and vigilant instruction for an assumption that they weren’t smart enough to figure it out on their own when in reality, I was deathly afraid and unhealthily anxious that something might happen to Mom and she would end up in the hospital or worse. And their frustration, likely with the whole situation around losing much of Mom at such a young age, and also at not feeling like ‘enough’ to take care of her consistently, bled into a blame game and shame game on me, the caregiver.

A few days after Mom got out of the hospital that time, my now-husband/then-boyfriend flew from Texas to North Carolina to be with me and help me take care of Mom. My boyfriend and I were deeply in love, so naturally as partners I could count on him for everything. He would listen when we would go over directions again and again, I was able to train him on administering the IV antibiotic, he was so sweet to Mom trying to get her to smile and laugh. He helped me feed her, and made her thickened water, and gave her pills, and changed her with me. He listened so intently without retort or ego or blame. He stayed for a couple weeks and it was everything.

The thing is, there was no history with my boyfriend and I concerning my Mom. All he knew was that he loved me, by default loved Mom, and wanted to do everything to help. He didn’t take personal offense at being taught how to do something, he simply said “How can I help?” and “Show me how.” There was no assumption that I thought he was dumb when I would painstakingly explain what to do if Mom had a seizure. It was a completely different experience than that which I shared with my siblings, and truly allowed me to let go (to some extent) - he fed my caregiving soul.

Translating day to day care for a loved one with incredibly special needs (MS, epilepsy, dysphagia, recurring pneumonia, bed sore, and UTIs) doesn’t happen in a matter of 30 minutes, yet at times I was expected to simply “leave a list” for a sister who was planning to show up to help when I had to take a 36 hour trip away for work. A sister who may not have visited Mom in months. This was the version of “letting go” that seemed so popular with those who provided the least amount of care and attention to Mom, and one many caregivers may relate to.
I don’t hold resentment or grudges over my siblings inability to comprehend Mom’s care and what it meant for me to be taking care of her 24/7 while working a full-time job from home. The years have passed, and I made bold choices for myself and for Mom, like moving us to Texas to be with my partner when we got married so we could take care of her together. And overtime, wounds have healed and lessons have been learned, and we’ve all moved forward together. And I know I’m not totally blameless in it all either. Over the years I conveyed frustration, anger, and judgement many times on those who I expected to help care for Mom who I felt fell short of that duty.

When it comes to caregiving, I take a note from Elsa in Frozen: Saying “Let it go” and actually letting go are two very different things! What does help is a deep and selfless understanding on behalf of the outside care network, not just of the care a person needs, but the care a caregiver needs as well. I’m so grateful for my amazing husband and all that he does as we continue to take care of Mom together.

I’ve slowly been able to let go of more responsibilities and even leave Mom fully in his care when I need to travel. Luckily for us, my brother, his fiance, and one of my sister’s are all pitching in to take over for a weekend so my husband and I can go to a friend’s wedding together coming up. The family is spending at least 5 days with us beforehand this time to be with Mom and nail down all the training and care responsibilities they’ll have.

Jess McLean is a freelance writer and full-time caregiver to her Mom who has Primary Progressive MS and Epilepsy. She lives Austin, TX with her husband and Mom, and blogs about caregiving tips, ideas, and solutions at Givea.Care.

Friday, 4 August 2017



For caregivers who are exhausted and lonely, the idea of creating a home celebration can be outlandish.  Often, we think, "what is there to celebrate?  I'm too tired to take on a project that isn't absolutely necessary!"

But celebrations can heal.  And they don't have to be big or fancy affairs.  They can be as simple as a cup of hot chocolate on a chilly afternoon (mini-marshmallows are an extra treat).  A celebration can be putting on some music that gets you tapping your feet and even dancing.  If it's cloudy, a celebration can be lighting candles and pretending they're a log fire.  If the sun is out, a little party can be putting on sun glasses and having juice in fancy glasses - voila, beach party!

When my children were little, I was nursing Nicholas intensively while taking care of my baby daughter and doing the housework.  One day, I decided that something had to change.  We needed a jolt of happiness - I needed a celebration!  Nevermind that we had nothing in particular to celebrate - I baked a cake, iced it and threw some edible sparkles on top.  I found some birthday candles and I added them as well.  Of course, we put on music and danced!

I announced to the children that it was a special day.... it was our 'Unbirthday'.  I got out some streamers and put them around the table, served the cake and we all sang 'Happy Unbirthday to You."  I felt better after our little celebration.  We all did.

Years ago, I was part of an Easter Seal parent group.  Even though I was thoroughly exhausted from looking after Nick night and day, I went to a day conference which was followed by a dance.  "I can't go to the dance.  I feel sick, I'm so tired", I confessed to my friends.  But then, the music started and I thought, "Oh, I'll just dance to this one song."  As I danced, I began to smile and then laugh.  "Maybe a party is better than a sleep!" I thought.  Of course, sometimes we really do need to rest, but sometimes we really do need a celebration, too.  And celebrations can be very small, but still meaningful.

Putting on jewellery, decorating a cake or muffin, inviting a friend over, looking at old photos... all these everyday activities can be made into celebrations.

Here are some photos of celebrations we have had in our family over the last couple of years.

Nick missed hockey when we lived in London, England, so we organised a tournament in our local park.  This one took some planning - note the inflatable Stanley Cup which had to be pre-ordered!

Tasting scotch whiskey with Uncle Frank.

Or going to a live game with your friend and your uncle!

Skyping or telephoning someone you love is like having a private party.  Mom always puts on her 'rouge' and mascara to skype her 'Treasure'.

But nothing beats arranging a visit with that special loved one - especially at their favorite sports bar!
Today, go ahead and celebrate.  It's tonic for the weary caregiver soul.

Thursday, 3 August 2017


Paid or unpaid, caregivers are never supposed to get sick, right? But sometimes we do. Sue Robins owns a health care communications company and she also happens to be the mother of a young man with Down Syndrome. Robins used to blog about caring for her son and his encounters with the health care system.  But that all changed the day she received a diagnosis of breast cancer.   

Now Robins blogs about her experience as a cancer patient – one who wears a hospital gown and takes a number from a distracted clerk at the clinic counter. She is a patient who weeps at the smallest kindnesses shown by staff and at the vulnerability she feels as a person whose life has been turned inside out.

I was interested in how Sue Robins’ experience as a patient is shaping her attitudes towards both health care and the natural care she provides to her family at home, so I called her and we had a long chat.

ME: What has your cancer treatment taught you about what constitutes good care?

SUE R: I was surprised to learn that the elements of good care in the pediatric disability world are identical to those in the adult cancer world.  Fundamental notions like respect, dignity, information sharing and partnership are universal, no matter how old you are. And we need to apply child-friendly practices to adult care because when you are ill or injured, you feel like a child again.

ME: Why do you think good care is so difficult to dispense? Are there lessons here for family care?

SUE R: I think there’s a notion in the health care world that if healthcare professionals feel empathy for their patients, they will burn out.  I believe the opposite is true.  Allowing yourself to be human with your patients, to let them get to know you…this builds trust and is the beginning of a relationship.  Of course, all caregivers (paid or not) need to ensure they stay in touch with their own feelings or they won’t be able to care for others.

ME: How has your cancer diagnosis and treatment changed your caregiver identity?

SUE R: Since my cancer diagnosis, I’ve realized that my entire identity was consumed by caregiving. Because I spent all my time ensuring others felt cared for and loved, I had forgotten about caring for and loving myself. I even needed permission from my oncologist to go for a walk! In the hospital setting, I realized that I had NO IDEA how to speak up for myself.  I knew how to care for my kids and my husband, but not for myself. I could not hide behind being a mother or caregiver anymore because this was about ME.

It was very hard for me to receive care from my family.  My daughter, who is 20 and studying nursing, travelled home for my surgery. I felt terribly guilty about disrupting her life and about the worry my cancer caused everyone in my family. But my daughter took charge, helped us read the hospital pamphlets I’d been unable to open and even changed my dressings after my partial mastectomy. The key lesson here was that I needed to learn how to unconditionally love myself and accept that, as Brené Brown says, “I am enough”.

Q: Will your care for your son change as a result of your own health care experience? 

SUE R: I think I didn’t realize the depth of pain that health care can inflict, and I hope I will talk to him about those realities and feelings now instead of just bribing him to go to the lab to get his blood drawn.

I think I’m less worried about being liked.  My friend Isabel taught me this mantra when I was going in for cancer treatments:  “YOU ARE THE QUEEN!”  With that idea, I walked into the clinic knowing I deserved to be treated with kindness and with care.  I was less apologetic and more direct.  I will take this newfound confidence into my dealings with my son. And I’ve learned to laugh more with my family and with my friends. Laughter is important, too.