The Caregivers' Worst Fear

Every caregiver has a worst fear - a nightmare scenario that unfolds like an unwanted, sinister guest in the imagination.  It might be triggered by the sound of an unusual thud upstairs, a front door slamming, or the smell of burning toast.  In my case, it's the telephone.  When Nicholas was very young, the treatment team suggested that he attend a special school for children with disabilities.  The intensive therapy on offer sold us on the idea and so, one day, a yellow school bus arrived at our front door.  I remember Nick's tiny face, contorted in a silent scream behind the  bus window.  It was raining that day and I cried too.

I sat down for a cup of coffee in the unfamiliar silence and peacefulness of our house.  A little while later, the telephone rang.  "It's the school here.  Nicholas has had a seizure and the ambulance has been called.  He is still not responsive, but he is breathing."  "I don't understand", I repeated dumbly, "Nicholas doesn't have seizures."  But he did have one that day and we have now come to accept that our boy has epilepsy, amongst his other disabling conditions.

After that, I startled whenever the phone rang.  I dreaded speaking on the phone and feared answering each call.

Years later, Jim and I were sitting at our dinner table with Jim's sister and her husband.  We were laughing about something when the phone rang.  It was Jean, my mother in law.  "Great!" I thought, "we can all chat on the phone together".  But Jean was calling from the hospital.  She had fallen on an icy street and had broken her hip.  Her life would never be the same.

Last week, Jim and I were at our family cottage in the Quebec Laurentians.  The end of a long, lazy beach day was broken by the telephone ringing.  It was an unfamiliar voice from Nicholas' residence - Nick had choked - he had stopped breathing - for 15 seconds or so - ambulance called - Nick was now breathing but unresponsive.  I searched for the car keys and left my wet bathing suit lying on the floor.

I drove through frustratingly slow country roads, many made even slower by summer construction.  Two hours later, I walked into Nick's emergency room bay to find the doctor assessing my young man.  Nick looked like himself, just a little flushed in his cheeks, but with pale lips.  A chest X-Ray showed nothing worrisome and so, we were discharged.

I still hate the telephone.  I much prefer email with its considered questions and answers.  I worry when I laugh at someone's joke in the company of adults - I am relaxed and happy, but suddenly a telephone ringing silences me.  I feel chastised and wary.

Everyone who gives care to a loved one who is vulnerable will have a deep-seated fear of losing control and somehow failing to protect their charge.  Those whose caregiving responsibilities test the very boundaries of human compassion will have well-founded fears that dog their every waking moment.  We all have our demons.

Why Do I Care, Why Do You Care?

I just love when I receive messages from strangers who share my interest in exploring ideas about caregiving.  Last evening, the little red number  '1' appeared above the message symbol on my Facebook page (also called The Caregivers' Living Room).  A student wanted to know if I would share her survey for caregivers of seniors - this survey represented her senior project, or perhaps the basis of her master's thesis.  "Of course!" I answered immediately.  But first, I completed the survey myself.

Well designed surveys manage to poke around in your heart of hearts and get to the truth of what you really feel about a given issue.  They do this by asking the same key questions, phrased a little differently, over and over again.  So it was with this survey.  'What drives you to give care?' was the essential query.  As I answered questions such as, "Would you feel guilty if you didn't provide care?" and "Would your friends and family think worse of you if you did not provide care?", I began to reflect on my own true motivations as a caregiver.

I care for my family members because I love them.  Because I love them, I want them to be comfortable, safe and happy.  In seeking to help them be comfortable, I experience intimacy.  When I experience intimacy, I feel most fully human.

The American author Willa Cather (1873-1947) wrote, “Religion is different from everything else; because in religion seeking is finding.”  I think this is true of caring for others, as well.  

If you care for a senior and would like to complete the survey, click HERE.

A Very Welcome Virtual Dinner Guest

Last night the extended family, minus Nicholas and my Mum, were around the dinner table at the lake.  Just fyi, on the menu was grilled salmon, black bean and corn salad with lime and cilantro, chipotle mayo coleslaw and berry pie with ice cream.  My daughter Natalie was here with a friend and so was my sister Karen and her family.  I've blogged before about our difficulties in getting Nick to the cottage - it's complicated, and my Mum is still recovering from her recent illness.

Anyway, the phone rang just as we all sat down and it was Jen, Nick's nurse.  "Nick wants to talk to you - he wants to tell you that he's disappointed because he missed the Liverpool football match that was played this afternoon in Toronto.  He forgot all about it!"  I suggested that Nick skype us so that he could say Hi to all of us... his computer is connected to his big screen TV, so on Skype, we would be able to chat face to face.  I placed my laptop at Nick's place at the table, but facing outward so we could all see him.  Everyone shouted their commiserations about the forgotten soccer match and we all laughed and chatted noisily, as we always do in our family.

We are still working on getting Nick to the cottage for the day, but in the meantime, it was wonderful having Nick back at our table for dinner.  Perhaps tonight I'll invite my Mum to join us 'virtually'!

Cranky Old Man - A Poetic Life Lesson

I saw this today while browsing the internet - it's for us.  We, who love and care for our ageing parents or our children, sisters or brothers with disabilities - this poem speaks about what we already know, because we give care.

Cranky Old Man.....
What do you see nurses? . . .. . .What do you see?
What are you thinking .. . when you're looking at me?
A cranky old man, . . . . . .not very wise,
Uncertain of habit .. . . . . . . .. with faraway eyes?
Who dribbles his food .. . ... . . and makes no reply.
When you say in a loud voice . .'I do wish you'd try!'
Who seems not to notice . . .the things that you do.
And forever is losing . . . . . .. . . A sock or shoe?
Who, resisting or not . . . ... lets you do as you will,
With bathing and feeding . . . .The long day to fill?
Is that what you're thinking?. .Is that what you see?
Then open your eyes, nurse .you're not looking at me.
I'll tell you who I am . . . . .. As I sit here so still,
As I do at your bidding, .. . . . as I eat at your will.
I'm a small child of Ten . .with a father and mother,
Brothers and sisters .. . . .. . who love one another
A young boy of Sixteen . . . .. with wings on his feet
Dreaming that soon now . . .. . . a lover he'll meet.
A groom soon at Twenty . . . ..my heart gives a leap.
Remembering, the vows .. .. .that I promised to keep.
At Twenty-Five, now . . . . .I have young of my own.
Who need me to guide . . . And a secure happy home.
A man of Thirty . .. . . . . My young now grown fast,
Bound to each other . . .. With ties that should last.
At Forty, my young sons .. .have grown and are gone,
But my woman is beside me . . to see I don't mourn.
At Fifty, once more, .. ...Babies play 'round my knee,
Again, we know children . . . . My loved one and me.
Dark days are upon me . . . . My wife is now dead.
I look at the future ... . . . . I shudder with dread.
For my young are all rearing .. . . young of their own.
And I think of the years . . . And the love that I've known.
I'm now an old man . . . . . . .. and nature is cruel.
It's jest to make old age . . . . . . . look like a fool.
The body, it crumbles .. .. . grace and vigour, depart.
There is now a stone . . . where I once had a heart.
But inside this old carcass . A young man still dwells,
And now and again . . . . . my battered heart swells
I remember the joys . . . . .. . I remember the pain.
And I'm loving and living . . . . . . . life over again.
I think of the years, all too few . . .. gone too fast.
And accept the stark fact . . . that nothing can last.
So open your eyes, people .. . . . .. . . open and see.
Not a cranky old man .
Look closer . . . . see .. .. . .. .... . ME!!

The Caregivers' Best Friend - TYZE

My son Nicholas' care is complex.  He has round the clock one-to-one caregivers including awake night nurses by the bedside.  Nick has a nasty habit of stopping breathing and the nurses rub his cheek or ear to get him going again.  They reposition him frequently for pain and help him settle after seizures.  The day shift carers are kept busy giving G-tube medications every hour or so, to say nothing of helping Nick pursue his many interests.   How can information be shared effectively and efficiently among so many people who care for and about Nicholas?  The answer lies in a highly specialized software programme called "Tyze".

Before we got Tyze, I would leave notes for the carers in Nicholas' room.  We had a white board on the  bedroom wall for important message such as medication changes.  A medical chart with daily notes sat on the table beside Nick's bed.  Still, messages got missed.  When people work only a couple of shifts a week, they tend to assume that nothing has changed since the last time they cared for Nick.  And of course, Nicholas' carers are his friends, so a friendly banter erupts when a new carer arrives.  Nicholas, being non-speaking and not very interested in the fine points of his own care directives would much rather lead the conversation toward WWE wrestling or hockey than towards adjusting his seizure medication up or down.  All those factors combine to sabotage the flow of important information.

Tyze is like a highly specialized and entirely private version of facebook, but with a lot more features.  The invited members of Nick's network are his care staff, the general practice physician and our immediate family.  There is a calendar tab where medical appointments or fun events are entered.  But there's also a facility to list the need for wheelchair transport.  Members of Nicholas' Tyze network can sign up for a task such as arranging the transportation to an outing or organizing a social event.  What is truly unique about Tyze is that it offers the opportunity to blend formal (paid caregivers, therapists, doctor) with informal (family, close friends) types of support.  Recently, Nicholas had a rash on his face.  I took a photo of it with my phone, sent the image to the doctor via Tyze and almost immediately, we had a treatment plan.

When my 90 year old mother became ill a couple of months ago, I started a Tyze site for her too.  I live in a different city from her and so it became important for our family and my Mum's carers to be in the loop.  Now, Tyze is being rolled out worldwide and many corporations are looking at it as a perk for their employees who have caregiving responsibilities.

Tyze is great.  I highly recommend it.

7 Habits of Highly Effective People - Caregivers too!

This morning I was doodling around looking at online news when I noticed this article on the business page.  "Hmmm", I thought, '7 Habits of Highly Effective People' could be something that applied as well to caregivers and people with disabilities.  I have never heard of Stephen Covey, the author of a book with the same name as the article, but I'm going out to buy it.  Sadly, Covey died yesterday from injuries resulting from an earlier bicycle accident. 

These seven tips are as relevant to any good caregiver who is advocating for their ageing parent in a nursing home or for their child with disabilities at school.  But my children would benefit from Covey's wisdom as well. I am trying to nudge Nicholas toward directing his own care, understanding how to advocate for himself (which is challenging given that he is non-speaking).  But Nick is a clever guy and a great communicator. I'm going to make sure that he reads this post.

In honor of renowned author Stephen Covey, who died this morning at age 79, we've decided to succinctly break down the "7 Habits of Highly Effective People" from his all-time best-selling book, which sold 20 million copies. 

Here's the short version, but we recommend you buy his book:

1) Be Proactive

As human beings, we are responsible for our own lives. We have the independent will to make our own choices and decisions, and the responsibility ("the ability to respond") to make the right choices. You have the freedom to choose your own fate and path, so having the independent will, imagination and self-awareness to make the right move makes you a proactive, and not a reactive, person.

2) Begin With The End In Mind

Mental visualization is extremely important. Covey says that all things are created twice: first, the mental conceptualization and visualization and a second physical, actual creation. Becoming your own creator means to plan and visualize what you're going to do and what you're setting out to accomplish and then go out and creating it. Identifying your personal statement and your principles will help.

3) Put First Things First

With your power of independent will, you can create the ending you want to have. Part of that comes with effective time management, which is divided into what is urgent and what is not urgent. If you deal with crises, pressing problems and deadline-driven projects first, your life will be a lot easier.

4) Think Win/Win

If you believe in a better way to accomplish goals that's mutually beneficial to all sides, that's a win/win situation. "All parties feel good about the decision and feel committed to the action plan," Covey wrote. "One person's success is not achieved at the expense or exclusion of the success of others." If you have integrity and maturity, there's no reason win/win situations can't happen all the time.

5) Seek First To Understand, Then To Be Understood

If you're a good listener and you take the time to understand a concept, it will help you convey your opinions, plans and goals to others. It starts with communication and strong listening skills, followed by diagnosing the situation and then communicating your solution to others.

6) Synergize

Synergistic communication, according to Covey, is "opening your mind and heart to new possibilities, new alternatives, new options." This applies to the classroom, the business world and wherever you could apply openness and communication. It's all about building cooperation and trust.

7) Sharpen The Saw

Sometimes you're working so hard on the other six habits that you forget about re-energizing and renewing yourself to sharpen yourself for the tasks in front of you. Some sharpening techniques include exercise and nutrition, reading, planning and writing, service and empathy and commitment, study and meditation.

Love and Memory at the Lake

My husband Jim and I met and married ‘up at the lake’ as we call our summer place in the Quebec Laurentians.  Jim’s parents met and married at the lake too.  Our grandparents were part of a group of friends, all english Montrealers, who bought property at the lake in the early 1920s and built houses that still stand today.  But the lake romances didn’t end with our families - my next door neighbour at the cottage married Jim’s next door neighbour too.  We joke about something in the water that makes us love-struck, but the truth is that we grew up in the days when we spent summer holidays as teenagers at the lake.  Summer romances sometimes blossom into something more, especially when courting in the canoe under the stars.  Jim and I had our 35th wedding anniversary this year.

I am writing this post at the lake - I wanted to write today about disability, but somehow I cannot bring myself to nudge my heart and soul out of the peacefulness that is here at a cottage full of memories and love.  The essence of this place is that memories of love and family are intermingled with being in the natural world.  We drink our lake water - the air is scented with pine.  

Caregivers often wonder how to ease the stress and worries of caring for someone vulnerable.  People who give care need to cared for too and my experience is that finding a place where memory, love and nature converge is very, very comforting. 

Malicious Whispers and Dangerous Trends

Occasionally, I will read something that another person has said or written and I think, "I just wrote about the same ideas last week!  Are some of us wired to the same computer?!"

The new summer edition of Abilities Magazine features an article I wrote about a trend that I began to observe over the past year - the title of the article is "The New Face of Eugenics: The Shocking New Trend Toward Devaluing People With Disabilities".  Here's a snippet:

In 2004, I recall telling a neighbour that my son Nicholas was very ill because of his severe disabilities and we had moved him to our hospital palliative care service.  “Oh”, she nodded sympathetically, “I remember when we had to put our dog down, it was so hard”.  I stopped sipping my coffee and blinked.  

I am reminded of that conversation because recently, I have observed a pernicious trend toward labeling some people not worthy of being considered human.  And it’s not just insensitive neighbours - it’s Princeton University bioethicists and animal rights activists Peter Singer and Geoff MacMahon.  They use IQ as a yardstick for human worth and argue that people with severe cognitive disabilities have roughly the same intrinsic value as a dog or a pig.  Now ethicists Francesca Minerva and Alberto Guilini have weighed in on the question of what kind of life constitutes personhood in a recent issue of The Journal of Medical Ethics.  A right to life, they say, is based on a person’s ability to perceive meaning in their own existence.  “Merely being human is not in itself a reason for ascribing someone a right to life.”  They use this argument to justify “after-birth abortion” (infanticide) in cases where, due to disability or even changed family economic circumstances, the killing of newborns is justified because infants have no appreciation of life or the loss of it.  Duke University philosopher Walter Sinnott-Armstrong makes an equally frightening case in another recent issue of the same journal.  He seeks to prove that killing in itself is not wrong. Rather, he maintains, the wrong is in the removal of abilities from another.  This line of reasoning allows him to justify using people with severe cognitive disabilities who require life-support technologies, but who are not brain dead, as organ donors.  Each of these arguments is frightening, but taken together, they pose a real threat to everyone, especially people with disabilities and those who love them. 

We should pay attention to these journal articles because ideas developed by philosophers and ethicists have a way of trickling down, over time, into the hearts and minds of everyday people.

Today, I happened on the blog of the esteemed disability activist and academic, Catherine Frazee.  Here is bit of what she wrote:

I’ve had many occasions to voice my outrage at Robert Latimer’s crime, and my horror at the wave of support that rose as his arrest and multiple trials turned through the cycles of front page news. Tracy is 19 years dead. Robert is again a free man, after 7 years in prison, and 2 ½ years on day parole.

I have no desire to rekindle the flame of this man’s still unrepentant posture that ending Tracy’s life was a blameless act. My quarrel here is not with a Saskatchewan farmer, or an Ontario mother, or any other horribly misguided parent seeking to end the life of a disabled child. My quarrel is with the clichés and platitudes that both foster and condone a very particular homicidal impulse. It is a preposterous notion that Tracy’s life did not conform to the law of nature that Robert somehow epitomizes.  The simplistic morality of pitting the “law of nature” against the “law of a nation” – the core assertion of Global’s Taking Mercy – must be exposed for what it is: a fundamentally eugenic rhetoric.

The Global Television special "Taking Mercy" to which Frazee refers aired in March of this year.  The show profiled Robert Latimer and others who defend the right of parents to murder on the basis of "compassionate euthanasia for the severely disabled."  

In a letter to Global TV, Laurie Larson, president of the Canadian Association of Community Living, wrote:

There are deeply concerning shifts taking place in society whereby a 'perfect storm' of threats are increasingly making it a dangerous time to be a person with a disability.....Global's programming uncritically provided a platform for perpetuating profoundly devaluing and damaging views without regard for (the) bigger picture or providing opportunity for people with disabilities and their families to provide a different perspective.

There is something happening in society when people who are watching the same puzzling picture begin to simultaneously and in isolation, figure it out.  The consensus amongst us, I believe, is that anyone who has a disability or loves someone with a disability better be on the lookout for these dangerous attitudes.  Because we can't afford not to - it's a question of life and death.  

Should My Daughter Be Her Brother's Keeper?

When my daughter Natalie was about three, her favourite game was 'hospital'.  This involved her lying in bed with toilet paper wrapped around her leg, making a cast.  The whole imobilized limb was then strung up with a skipping rope over a hook on ceiling creating a makeshift 'traction' device.  To top it off, she demanded a bottle to drink her 'medicine'.  One does not need a degree in clinical psychology to figure out that Natalie was doing a very good imitation of her brother.  

My "Young Carer's Rap" post on July 3rd got me thinking about Natalie, my daughter.  Last night Natalie and I were chatting about her thoughts on whether or not she thought my husband and I asked her to help with Nick's care too much or too little over the years.  We agreed that too few demands meant a lost opportunity to learn about empathy and responsibility.  Too many could lead to resentment and even an aversion to looking after others, including one's own children in later life. 

When Natalie was about ten, I asked her to help with Nick's tube feeds - a slow push of formula in a large syringe while watching morning cartoons was her job.  I was in the kitchen, watching out of one eye while I made school lunches or breakfast.  Nat sometimes wanted more responsibility - and one of those times I will never forget.  It was a day in August of 1996.  Moving day, to be precise.  We were moving from London, England, back to Canada and the kids woke up early, very excited.  Nicholas was in bed while I pushed extra clothes and supplies into our carry-on luggage.  Suddenly, I heard a thump followed by an almighty wail.

I ran down the hall to find Nick on the floor with a bloody lip and Natalie standing, her hands covering her mouth.  Nat was only four, but that didn't stop her from thinking that she could hurry our departure along by being helpful and getting her seven year old brother up and out of bed.  Nick couldn't sit or stand, so the resulting kaboom was predictable and of course, forgivable.  I hugged Natalie before Nick and soon enough, we wiped the blood from Nick's mouth and got ourselves to the airport and home to Canada. 

Did we ask too much or too little of Natalie?  That's a question I will always ask myself and I don't think there is a clearcut answer for any parent who has a couple of kids, one of whom has disabilities.  Maybe the trick isn't about how much you ask, but how you talk about it and keep talking years later.

This is Natalie today - still busy going places!  

Nick's Home Had a Birthday!

When Nicholas was born in August of 1988, we thought he was perfectly healthy and normal - except perhaps for the fact that he was premature and weighed under four pounds.  It was five months later, after several trips to the emergency room for dehydration due to Nick's inability to suck and swallow that we received the news that all of our baby's symptoms were due to a neurological injury of some sort.  Soon, I began to gather information about cerebral palsy and the various associations in our city that could help Nick and our family.

One of those organizations was the Ottawa Rotary Home.  The Rotary Home offered 21 nights of respite for children with disabilities.  Many of the children served by the home had very complex conditions and some had difficult behaviours.  All were loved and cared for by highly trained staff in a homey, cheerful environment.  When I talk about the early days of using Rotary for respite, I find it hard not to cry.  In those days, Nicholas cried and cried.  He screamed and cried - once for 37 hours in a row.  Jim and I were so sleep deprived that one day, I locked the keys in the car three times in one day - with the car running!  We were exhausted, desperately loving our baby, but afraid that we could not keep up with his complex needs. 

Fast forward to last Saturday, June 30.  Nicholas now lives in the new Rotary Home adult house and for us, the Home still embodies the message on their logo - "Keeping families strong - helping them together".  Our family is strong because we love one another.  We are together because we had blessed sleep for 21 nights a year in the early days and more recently, a place for Nick to call his own home when we became too old to look after our beloved son and no other facility in the city would accept him.  Last Saturday, Rotary Home celebrated its 30th anniversary and of course, we helped with the celebrations!

Here is Nicholas with me and Member of Parliament for Ottawa South, David McGuinty.  

We are grateful for the Ottawa Rotary Home, then and now.  Happy Birthday to our community heroes - everyone at Rotary!

Young Carers' Rap

Tricky P, rapping on being a young carer for his grandparents.  A terrific young artist giving voice to the experience of roughly 108,000 in Canada alone who are under 18 and provide care to a family member on a regular basis.

The Young Carers' Initiative is an organization here in Canada supporting kids looking after their parents or grandparents.  In the UK, Young Carers has this role.  In the United States, The American Association of Caregiving Youth does terrific work to support young people who take care of a relative needing help to get through the day.

Whether or not young people should be asked to care for their relatives who are infirm because of age or disability is an ethical and economic question.  I believe the answer to the ethical question of whether  our young people should have caring responsibilities is a relative one.  Relentless cutbacks to social care budgets leave some family members giving care in positions of powerlessness and isolation.  The downloading of ever more complex nursing duties to family means that some caregivers, including those under 18, are coerced into giving levels of care that make pursuing other interests (such as school) impossible.  Giving some care on a regular basis can be a powerful ingredient in developing responsible maturity, but like any good thing, too much can be toxic and life-limiting.

Bravo to these organizations supporting young carers and helping them achieve balance in their lives.