Monday, 25 May 2015

When Giving Up Your Privacy is Part of the Job Description

Caregivers have very little privacy.  We leave the bathroom door open so we can hear our loved ones if they call.  The clinic calls just as we've poured our tea and sat down with the newspaper. A home care worker arrives to give us respite and complains about the dishes in the sink.  Later, a social worker arrives and enquires about our spousal relations.  Giving up some privacy is necessary for caregivers sometimes, but we don't have to give it all away.  Preserving a bit of privacy means keeping a personal part of ourselves intact, with dignity.

So, where can caregivers find privacy at home?  Here are some ideas:

1)  Get up before your loved one.  The early hours of the morning are the best friend of many caregivers I know.  The house is quiet and there is delicious peace at the kitchen table.

2)  Carve out one small bit of time for yourself every day and a larger block once a week.  The daily respite might be a bubble bath and the weekly break might be yoga class.  Protect these times fiercely - they are sacred!  So make sure that friends, family and medical professionals know you are never available during your breaks.

3)  Defend your space and your home (sanctuary) when professionals come over.  Develop a cheerful greeting such as "Welcome!  Tidying up isn't high on our list of priorities lately, but luckily our family is OK with that."

4)  If you have the space, create a 'room of one's own'.  Actually, it doesn't have to be a whole room - maybe just a desk, a corner chair or a bathroom.  Make this your private space and decorate it the way you like.  Find photos or prints that inspire you and put them up.  Add candles and fairy lights.... whatever has personal meaning for you.  This is your sanctuary and even if you leave the door open for caregiving, your space has imaginary walls.  It is yours.

5)  Find quiet places in your community.  Visit a church, synagogue or temple during off-hours.  A walk in the woods works well for privacy and peace, too.  If you don't have a forest nearby, visit a cemetery.  It sounds crazy, but these are public, natural spaces designed for privacy and contemplation.  Often, there are beautiful gardens and woods with benches for quiet reflection.

Being intentional about protecting your privacy as a caregiver is important.  Much of the day, our lives are open books, but saving a little time and space just for ourselves nourishes the heart and soul.

Tuesday, 19 May 2015

Want to Be Included in Your Loved One's Home Care Team? Here's How

I spend a lot of time reading about how families manage caring for loved ones all over the world.  Today, developed nations share common challenges –  aging populations, more people trying to balance employment with caregiving, and governments trying to get the most out of family caregivers. All while trying to manage their governments' over-stretched healthcare budgets.  The UK, the US and Canada are all experimenting with combining health and social care into ‘baskets of services’, giving cash to patients and families to buy their own care and finding ways to support the legions of family caregivers whose unpaid labour everyone agrees is essential.

Last week, the Ontario Minister of Health and Long Term Care, EricHoskins, announced his plan to transform community care in Ontario.  The ten point plan for change included these three recommendations:
4.  Move forward with Bundled Care
Ontario is helping health care organizations provide better and more integrated care for patients and their families, with a new payment model called Bundled Care. This coordinated approach will help patients transition more smoothly out of hospital and into their home. It also builds on the success of St. Joseph's Health System's Integrated Comprehensive Care Demonstration Project where integrating funding across multiple providers and care settings improved the patient experience, reduced time spent in hospital and decreased the number of emergency room visits.
5.  Offer self-directed care to give patients more control
Over the next two years, Ontario will pilot different approaches to giving eligible Ontarians more choice over who provides services in their home and when these services are delivered. The goal is to empower patients and caregivers by giving them more flexibility and control over their care plans by involving them more in the planning, organizing and coordination of care they receive.
6.  Expand caregiver supports
Caring for a loved one can be rewarding. It can also be challenging, both emotionally and physically. The government recognizes the important contributions of caregivers and will provide more support for caregivers, including training and education, improved access to information and respite care.

These are all great ideas that will only succeed if service providers, health care professionals, clients and family caregivers TALK to each other.  Bundled care means multiple service providers across health and social service sectors will be involved with the same family.  When important messages need to be shared within the larger group, who will be responsible for communicating across agencies?  How will clients and families tell everyone in the circle of care about an important health event without spending hours on the telephone?  Sunnybrook Hospital in Toronto has identified this challenge for its patients in the community and they’ve come up with an IT platform called MyChart.

1. What is Sunnybrook’s MyChart™?
·       My Chart is an online website where patients can create and manage their personal health information based on clinical and personal information.

2. Who has access to Sunnybrook’s MyChart™?
·       Currently only Sunnybrook patients have access to MyChart™, but they can electronically     grant access to family caregivers, hospital clinicians, primary care physicians, Community     Care Access Centres (CCACs), and pharmacists.

3. How do patients access MyChart™?
·       MyChart™ is accessible from anywhere at any time through the Internet. Once registration   is complete users can go to and log in to review their medical records.

4. What do patients have access to through MyChart™?
·       Personal and family health details (including allergies and current medications)
·       Online appointment requests
·       Online patient questionnaires
·       Clinic visit notes
·       Personal address book, compiled by the patients – physicians, caregivers, labs, clinics,      etc.
·       Personal diary
·       Test results (ie. labs, CT and MRI reports) which are gathered from Sunnybrook’s    Electronic Patient Record (EPR) system.
·       Links to relevant disease-specific information and online events
·       Personalized health information (eg. FAQs on procedures, etc)


For clients in the US and Canada who need a similar, secure web-based communication tool to bridge communications between home and medical professionals, there is Tyze PersonalNetworks.  Tyze is free and it’s the product our family uses to coordinate the support for our son and for my Mom.  I’ve written about Tyze many times before – I’m a huge fan.  Teamwork can’t happen when people don’t talk to each other in order to share vital information. Caregivers need the changes that Eric Hoskins announced last week and we need the tools to manage those changes.  Products like Tyze and MyChart have a role in ensuring the success of community care transformation. 

Wednesday, 13 May 2015

Never Feel Alone Again


My parents turned 70 a few years ago. It was a wonderful celebration full of friends, laughter, food, and dancing the night away. I must admit even I, an only child who often ran away at the sight of parents’ friends, had a lot of fun. But though this celebration was great, by the very next day my parents had retreated and transformed back into their old habits — lonely, isolated, and comforted only by the glow of their TVs and iPads.

It wasn’t always like this. My parents used to be quite social and active, but when retirement hit it was as if their life came to a grinding halt. In the years since, I slowly watched them become more isolated and retreated. Sitting on the couch became their favorite pastime and the need to consume TV shows became their obsession. The worst part was watching their health slowly deteriorate, and their minds becoming numb. No matter what I tried to do to encourage activities in their lives, from Wii to FitBit to mind stimulation books, nothing seemed to work. My mother became more frail and developed muscular and gastric ailments that doctors couldn’t explain while my dad succumbed to his hypertension and worsening heart condition and ultimately receive an angioplasty. Worst yet was the toxic moods and environment that developed at home that made life increasingly uncomfortable for not only them but also family and friends.

I too began to wane and came close to giving up when something miraculous happened. My parents downloaded an app onto their smartphone called WeChat.

Years ago, I bought my parents smartphones, not because they were digital mavens or even cared about technology, but because it was the only type of phone available. For years they simply used it as a dumb-phone. No apps, no text messaging, only for calls. But as luck would have it, one of their friends introduced them to WeChat a year ago. It was as if someone breathed new life into them. The moment they started using this app, they simply couldn’t put it down. It completely transformed their life.

WeChat is a messaging application available for iPhone, Android, and others. Like similar apps out there, WeChat helps you easily connect with friends — allowing you send and receive messages, voice notes, photos, etc.

What made this app particularly relevant and exciting for my parents is something we in the industry call: NETWORK EFFECT. People are naturally social. The bigger the network of people using something, the more likely someone new will join.

This was particularly true for my parents and WeChat. It wasn’t the bells and whistles that my parents cared about, it was the simple fact that all of their friends were using it. Now all of a sudden, by downloading and installing one app, my parents had instant access to their friends. They no longer had to wait for someone to call or turn on the computer to check email. Their smartphone now linked them to an online community where their friends are always virtually present. They can choose to watch messages fly back and forth, engage in one-on-one conversations, or even socialize with entire groups at a time.

This level of engagement and participation started to completely transform their behavior. Age, retirement, and “home captivity” were no longer a barrier to social life. With their newfound virtual connectedness, they began to talk about daily life, share moments, and even self organize into activities. They started going out to more social gatherings, dancing parties, and even started hosting events at home. The variety of social engagements is simply amazing, a level that emailing and older platforms have simply never achieved.

For the first time in years, my parents are happier. They’re healthier. They now finally understand why the rest of society, for better or worse, is completely attached to their phones. For them, WeChat has become their obsession. For me, I can finally breathe a sigh of relief and not worry about them ever feeling lonely or isolated again.

WeChat is a great app and a great way to connect with people, but isn’t necessarily the right app for everyone. What’s most important is finding an app for you or someone you care about is first knowing what your friends and family are already using. Do that and it’s one step closer to never being alone and isolated again.

A few messaging apps options that will work for you - available on most iPhones via iTunes App Store and on Android smartphones via Google Play Store:
- WeChat  (Free, requires Data plan): a social messaging platform that allows you to easily message others one-on-one or in a group, share photos, and even send voice messages. Requires your friends and family to all use WeChat.
- Facebook Messenger (Free, requires Data plan): for those who already use and love Facebook. You already have a lot of friends on there so it's all the more natural to start a conversation.
- Google Hangouts (Free, requires Data plan): for those who email a lot and happen to use Gmail. Chances are most of your friends already use Gmail. Guess what - that means they're already on Hangouts too ready to start a conversation.
- Text Messaging (Free, requires SMS messaging plan): Yes it's "old fashioned", and while it's not an app per say and may not sound like anything special but sometimes you don't need the confusion of getting everyone to download and use something new. Start with just a text message to a friend or loved one. Everyone has a phone.

A healthier, better you begins with a conversation.

by Mike Hua
Mike is the co-founder of the start-up Ola Health, an anonymous support community for health, life, and caring for others, available on your smartphone.

Saturday, 9 May 2015

What It Means to be a Mother... and a Daughter

Recently, I was chatting with my friend and fellow disability Mom, Julie Keon.  I had the privilege of writing the foreword to Julie's profoundly moving new book, What I Would Tell You - One Mother's Adventure With Medical Fragility.  I highly recommend Julie's book to anyone with a complex child!

Julie is a 'wise woman' whose professional background includes stints as a doula, a pregnancy plaster casting artist, and more recently as a life cycle celebrant - creating personal ceremonies for important events across the life span.

So, Julie and I were talking about motherhood.  She said, "it's one workshop that I give, I ask women to state their name followed by names in their maternal lineage."  Julie explained, "So, someone might say, "I am Susan Knight, daughter of Stella McNaughton and granddaughter of Alicia Gray.""  Women state the names of their maternal forebears going as far back as they are able.  Julie told me that almost every woman who performs this naming ritual begins to cry as she recites her lineage and reflects on what it means to be a woman in her family.  I thought about those tears and wondered if they sprang from a realization of family connectedness, but also from the shared joy and pain of being a woman, a mother and a daughter.

I am Donna.  I am the mother of Natalie.  My mother is Marjorie and her mother was Gertrude Alice.

This is me with my mother, Marjorie Carol McKeown.  Happy Mother's Day, Mom, I love being your daughter.

Wednesday, 6 May 2015

How To Stay Positive

GUEST POST by a Staff Writer at Dry Depot

Being a caregiver is a difficult task and many of us will face extreme physical and emotional challenges as we care for our loved ones. However, we continue to go about our tasks, as it is an important part of our daily lives even if it can lead to frustration.

As a caregiver you are a compassionate and kind human being, and when frustration mounts it can feel overwhelming.  The last thing we want to do is take it out on the ones we love. So how can we manage our own emotional wellbeing while caring for a loved one? There are many ways to maintain positivity through a tough day, and we have outlined five steps to help you stay positive while caring for your loved ones.

Don’t Focus On The Past-
It’s easy to get sidelined by thoughts of the past, and focus on what life was like before taking care of a loved one was part of your daily routine. This can lead to emotional distress and while life might have been different before becoming a caregiver, staying focused on the present is essential to maintaining a positive outlook.

Focus On Education-
It’s important to continually educate yourself about your loved ones condition. From physical care best practices, to what new scientific advancements can help you and your loved ones live with a debilitating condition. If we learn about the condition our loved one is living with, it will also help us become more compassionate and understand how we can best be of service.

Research Products And Services-
There are many products, services, and new technologies that can make life as a caregiver much easier. Whether it’s a shower seat or adult incontinence products, investing in some of the tools that make a caregivers life easier will offer some much needed relief. New technological advances such as video doctor appointments, pre-programmed cellular devices, and adult diaper delivery services have made it easier for caregivers to maintain a positive outlook and not get bogged down with stress.

Go Outside-
More than likely as a caregiver you spend a lot of time indoors with your loved one. It’s important to take breaks in order to soak up some Vitamin D and rejuvenate your spirits with fresh air.  This will do wonders for your psyche. Whether you can take short breaks or can take your loved with you, make time for the outdoors whenever possible.

Take A ‘Me Day’-

This is the most essential of all of the steps when it comes to maintaining positivity and emotional wellbeing. Everyone needs a “me” day, and you should schedule in personal time whenever you have the chance. We are better caregivers when we take personal time. Being a caregiver can be overwhelming at times, but that doesn’t mean you shouldn’t still set personal goals or enjoy your time away from your duties. For many caregivers the thought of leaving our loved ones can be difficult, but just keep in mind that when you take time for yourself, everyone benefits.

Monday, 4 May 2015

Five Bad Beliefs That Harm Caregivers

Caregiving is a complicated role, full of joy and sometimes grief and frustration.  Caring for those we love is laden with human drama and is hard enough without imposing beliefs and standards upon ourselves that make it harder.



1) My role is to give care, not receive care.

Anyone giving or receiving care is in a relationship with the other.  As in partnerships of any kind, there is fluidity in the give and take.  Why, then, do we sometimes believe that caregivers only 'give care'?  Of course, there is one person in a care relationship who will need assistance with particular activities of daily living.  But that doesn't mean that a loved one never gives care in return - a frail senior can pat an adult child's hand or offer words of wisdom.  Sometimes, care comes in more ephemeral ways such as a smile or even an hour of peaceful silence.  Friends or extended family members might offer to fill a shift or cook a meal.  Caregivers are care receivers, too.

2)  I will be happy only if others show me I am loved.

This belief is very harmful to caregivers because frequently our loved ones cannot offer positive reinforcement for our private caring acts, and why should they?  Caregiving is by nature, very personal.  The purpose of care is to enable a loved one to be healthy and do whatever he or she would like to do.  Happiness and fulfilment are emotions that must be generated by the caregiver within herself.  Most successful long-term caregivers have become expert at locating life satisfaction within.

3)  If I don't do everything myself, I am a failure.

This is perhaps the most damaging belief for caregivers and care receivers alike.  If Steve Jobs had believed he could create a computer company with no employees, Apple would not exist today.  Care, like all complex tasks, is best delivered as a team.  This doesn't mean that a different person needs to bathe your loved one every day or cook in your kitchen.  It means that people need to support YOU, the caregiver, to thrive in your role.  That support will look different for every caregiver, but the constant is that there is a team and the caregiver is the team leader.

4)  I must appear calm and in control at all times.

Caregiving is emotional.  There are highs and lows as well as long stretches of quiet repetition. Many caregivers feel that it's wrong to express frustration or grief - that a show of emotion to medical professionals is 'unprofessional' or worse, a betrayal of their loved one.  Some caregivers worry that tears will elicit an unwanted pity response in friends or that if they begin to cry, they might not be able to stop.  Caregivers need to express emotions, including painful ones.  Julie Keon, in her new book "What I Would Tell You" expresses this human need acutely:

"Grief can be our silent companion, something to be tended and nurtured. Think of grief as a person knocking on your door who really wants to see you. They knock incessantly...When the knocking starts, instead of hiding, you can take a deep breath and welcome this person into your home... You set a few reasonable boundaries as to how much time you have to give and then you put the kettle on. You settle in for some hot tea and conversation. As the visit progresses, you notice it isn't as bad as you thought it would be. You are discovering that this person you had always hidden from is wise and has much to offer."

5)  Work at home is not as important as work for pay.

Wrong!  Work at home is vital and it has great worth.  In Canada, family caregivers contribute over 5 billion dollars in unpaid labour annually to the national health care system.  The next time someone asks "so, do you work?", answer "oh yes!  I work as my mother's caregiver.  And what do you do?"

Try turning these harmful beliefs into positive ones:

My role is to both give and receive care.  I can be happy and fulfilled if I choose to be.  I give the best care when I work in a team.  I pay attention to my emotions and sometimes, I feel better after a good cry.  My work is valuable and important. 

NOTE:  I wrote the foreword to Julie Keon's wonderful book 'What I Would Tell You' and I'll be telling you more about it in the weeks to come.

Thursday, 30 April 2015

Not Exactly As Planned - A Must Read Book About Family and Disability

It was months ago that I added to my reading list 'Not Exactly As Planned: A Memoir of Adoption, Secrets and Abiding Love' by Linda Rosenbaum.  But it was just this morning that I turned the last page and regretfully said goodbye to the Rosenbaum-Christmas family of Toronto Island.

Linda Rosenbaum and her husband Robin Christmas have two adopted children, but only one, Michael, who struggles with the effects of Fetal Alcohol Syndrome Disorder, or FASD.  Michael Christmas is a young man now, an accomplished wood carver who has learned how to be in the world through the love of his parents and sibling - a love that is imperfect but unwavering as in all the families I know who are raising children with developmental disabilities.

I cannot tell you how much I loved this book.  Linda Rosenbaum doesn't just tell us the story of her adoption or of raising a child with learning and behaviour challenges.  She tells us the story of her life and what meanings her family disability narrative held for her.  We learn the secret of Linda's maternal grandmother's mental illness.  We learn the vital importance of rites and rituals in bringing calm and order to families burdened by chaos and unpredictability.

But there's a more personal reason that I loved this book.  I too have a family history that impacted the way I felt about Nicholas' diagnoses.  Witnessing my father having a post-stroke grand mal seizure when I was 17 made me paralyzed with fear when Nick received a diagnosis of epilepsy.  I too struggled with serious depression and anxiety when I was a young student (I blogged about that part of my life HERE).  We are all a product of our experiences and that fact is revealed in harsh light when mothers and fathers struggle to be good parents to their children with developmental disabilities.

So many of Rosenbaum's words resonated with me.  Take this reflection, for instance:  "Parents often differ, but with a disabled child, the stakes feel higher.  We continuously wanted to 'correct' or teach or model.  We we had the power to 'fix'.  Every move counted."

Or this:  "I began sobbing.  What if my tears never stopped?  This is something for serious criers like me fear: that once we let ourselves go, we may never come back.  Shouldn't we know by now that crying, like life and a good story, has a beginning, a middle and an end?  Yes, perhaps I should have known.  But it's hard when I never know where the story is taking me next.  I kept crying."

I wager that every mother of a child with disabilities has experienced the panicky, out of body experience of sobbing long and hard, fearing it will never stop.  I have.

This book is not just about Fetal Alcohol Syndrome and it's not just about adoption.  It's about family, personal histories and the effects of disabilities on our children and all who love them.  I urge you to buy this book and then to look at Rosenbaum's website as I did this morning.  Her family photos and stories are a wonderful adjunct to her book.

NOTE:  I am honoured to serve on the board of NeuroDevNet, a Canadian Centre of Excellence that funds research into neurodevelopmental disabilities, including FASD.