Friday, 12 September 2014

After Caregiving: A Tribute to A Dear Friend

Today I hugged one of my oldest and dearest friends.  I hugged her for a long time, because this was the day of her husband's funeral.  Kathleen Campbell Jordan married Bill Jordan 47 years ago, ten years before Jim and I tied the knot.  Kathleen and Bill have three grown children - Christopher, Geoff and Suzanne.  Chris has disabilities.  Suzanne came to the cottage with us one summer to help us look after Nick and Natalie.  Our two family experiences are intertwined in many ways.

Twenty-six years ago and the day after we received Nicholas' diagnosis of severe brain damage, Kathleen arrived at our door.  Here's how I wrote about that day in my book, The Four Walls of My Freedom:

At that time, my husband Jim was on loan from Foreign Affairs to the Prime Minister’s office and would come home near bedtime to feed Nicholas, still suited, watching the news.  Word spread in our family about the “condition”.  A cousin came over with a friend to give advice.  The friend’s business card read “Volunteer Consultant to Families with a Child with a Disability”.  Her name was Kathleen Jordan and she had a son of sixteen with incomprehensible difficulties.  He was blind, had cerebral palsy, Tourettes syndrome and epilepsy.  I started to examine this blonde woman in my living room.  Her nails were beautiful; they were glossy red and perfectly rounded.  I asked, “How is it you have time to do your nails?”  I really wanted to know. 

Kathleen had a huge pile of papers with her.  She patted me and said “I have some information here, but I completely understand if you want to look at it some other time”.  “No!” I cried, “Give them to me now!  All of it.”  Years later, I heard the expression “cognitive lifeboat”.  In that moment, I found mine, and, gasping, climbed aboard.

 Kathleen Jordan would become my mentor in parenting and advocacy.  With Kath at the helm, together we toiled night and day to put "Lifetime Networks Ottawa", or LNO, on the map in our city.  LNO was (and still is!) a family-driven social enterprise designed to help parents plan a safe and secure future for their adult child with disabilities.  (It is an affiliate of Planned Lifetime Advocacy Networks in Vancouver.) Part of our family's future planning always included a retirement for Jim and me.  I knew that we would crumple under the weight of Nick's dependency needs as we aged, so transitioning out of a primary caregiver role was for us, do or die.  But Kathleen has always been a caregiver - first to her own mother and mother in law, to her dear family friend Doris, then to her husband Bill until he died this week.  And until recently, Christopher.  Two days before Bill passed away, Chris celebrated his 40th birthday.  Nowadays, he lives with a helper in his own apartment

 Kathleen created those arrangements for Chris after years of trials and errors.  Christopher has good days and bad days - on good days, he can direct his own care, tell his helpers which medications he needs, call friends and carry out many activities of daily living without assistance.  On bad days, Chris needs almost total care.  Kathleen always wanted supportive housing arrangements that would allow Chris the flexibility to be in charge of himself on good days, but give him intensive care when he needed it at other times.  Arrangements like that don't exist in our system, hence the failures that occurred in the past.  But Kathleen and Bill persevered and now Chris has a good life.  

Bill Jordan was a rather old fashioned man of values.  A larger-than-life man of great wit, Bill only ever had eyes for one girl; Kathleen.  He was a deeply loyal and loving family man of faith and character.  Today at Bill's funeral, the church was filled with legions of Chris' former caregivers.  Some of them refer to Bill as "Dad" - all are extended family.  
With Christopher settled in to his apartment and Bill gone, what will Kathleen do?  Who are any of us if we are not caregivers?  This was the question I asked myself as I hugged Kath.  Over the coming months, once again, I will learn from watching my friend.  As Kathleen begins her new journey of self-discovery, I will be there for her as she has always been there for me.  Rest in Peace, Bill.

Saturday, 6 September 2014

Why We Shouldn't Read (Sometimes)

The other day, a newspaper headline caught my eye: “The Joyof Not Reading”, it read.

It was an opinion piece about a man whose immigrant parents had told real bedtime stories to him and his brother as they grew up.  “My brother and I shared a bedroom as kids, and Dad would often come up before lights out and tell stories.”   The author’s father told tales of a peasant life, coming to Canada, homesteading in Northern Ontario and his mother’s thirst for a better life in the city. 

The writer laments that he never told his own children his ‘real’ stories.  “I’d love to say I followed my father’s storytelling tradition, but it just never occurred to me.  I read to my kids before bed, and now I see it was an opportunity lost.”

The writer worried that his suburban North American upbringing would contain no stories worth telling.  But as his own old age approaches, he reflects, “The more I reminisce about my own life, the more I see it was rich with experience, with plenty of opportunities to get into tangles.”

Storytelling is a potent medicine for the heart and mind.  This article got me thinking about how in contemporary society, we believe we have no stories to tell.  But we DO have stories to tell – all of us!  And I have vowed to myself to take this author’s advice and begin telling them to my children, to my mother and now, to you.  So, here’s a story that happened to me when I was twelve years old.  Perhaps you will think of a story to share with your loved one today – we are never too old for ‘storytime’. 

It was the fall of 1967.   In time to begin the new school year, our family had reluctantly moved in late August from Montreal to a small town in Southern Ontario.  My Dad had accepted a job with a big company and it was a promotion.   So we waved goodbye to Expo 67 and the excitement of Montreal’s World’s Fair to greet a farming community and new friends in a small city called Brantford.  Of course I wanted to fit in and I soon found out that not many people moved in and out our town in those days.  Tall for my age, I stuck out in more ways than one. 

So one day, a new friend shook the long bangs from her eyes and announced seriously that she had ‘colored her hair’ using lemon and then the rays of the sun.  Standing around her under the light in the girls’ washroom, we nodded that yes, we definitely saw highlights.  That instant, I wanted lemons more than anything.

You have to understand that my Mom hates to cook.  She’s not even that interested in eating.  In our fridge, we had minute steak, stewed tomatoes, iceberg lettuce and white bread.  But nothing so exotic as a lemon!  I scavenged through our cupboards.  Aha! There it was – Hawes Lemon Oil for Furniture.  “This will do”, I thought and proceeded to pour the contents through my hair over the kitchen sink.  Next, I pulled out a lawn chair from the garage, arranged it on our front lawn and looked up at the sky.  It was cloudy, but there was enough light to give my dark brown hair golden highlights, I was sure. 

An hour later and bored, I climbed the stairs to our second floor bathroom.  I put my head under the hot shower and only then did I begin to realize I might have made a mistake with the lemon oil.  The water ran off my hair like water off a duck.  It beaded and failed to even penetrate to my skull.  A large bottle of Breck Shampoo for oily hair would do the trick, I thought.  Five shampoos later, there was no change. 

Eventually of course, the lemon oil came out of my hair and I never did get blonde highlights.  A few years later, my Dad’s company closed and we moved back home to Montreal. 

Next week, I’ll visit my Mom and I’ll ask her to “tell me a story!”  My Mom’s stories are the funniest ones.  And when I see Nicholas and Natalie, I will ask them for something from their past as well.  Maybe it’s my own advancing age and wanting to replay the events of our family life, but I’m definitely sold on ‘the joy of not reading.’

That said, I hope you won’t give up reading altogether, because my book has just been released in the US!  (It’s already available in Canada.)  There are lots of stories of caregiving in “The Four Walls of My Freedom: Lessons I’ve Learned From a Life of Caregiving” as well as reflections on the meaning of a ‘good life’ for families involved in giving and receiving care.

Monday, 1 September 2014

Great News Today!

The new paperback edition of my book, "The Four Walls of My Freedom: Lessons I've Learned From a Life of Caregiving" (The House of Anansi Press, 2014) is available as of today in the USA at all major booksellers!

Here's a short interview that aired a few months ago on a national morning TV show in Canada.   It will give you a sense of the book.  Here's the link - sorry, I couldn't find a way to embed it.

Wednesday, 27 August 2014

The Time It Takes

It was mid morning yesterday when I arrived at my Mom’s apartment and mid afternoon when we ambled out to the car to begin our errands.  In the interim, we’d had toast and coffee, I’d tamed her bedhead hair with spray and mousse, and I’d done a quick alteration on her summer dress.  Mom’s lost weight and many of clothes hang loosely on her thin shoulders now.  Four hours is how long it takes to get up and out in Mom’s world.   And that’s OK, because those hours are precious to me.  It’s when we do our best chatting – I hear about her plans to get a passport - “You want a passport?!”, I remark, trying to sound casual.  “Yep.  I want to go to Kennebunk.  By hook or by crook, I’m going to get there.  Glenna’s going to help me.”  Glenna is Mom’s favourite part-time paid helper and Kennebunk, Maine, is where Mom spent summers growing up.  It is her soul place.  “Oh, and did I tell you I’m getting a car?” she proudly announces, as her eyes twinkle.  “The kind that drives itself.  I read it in the paper.  They’re not out yet, but they’re coming soon.  I can’t wait.”  "Awesome idea!" I nod.

These are the conversations I have with my Mom when we have a whole day to laze about and take our time getting ready to go out. 

Later, at home, I called Nick.  The sun had set and I hadn’t started dinner, but I wanted to know how my complicated son was feeling.  Nicholas has a feeding tube and the skin around the tube is brewing a nasty staph infection.  The oral antibiotic has being playing havoc with the anti-seizure drug he takes and I knew that Nick had been to the clinic for an emergency blood test to investigate his drug balance.  “So Nick, did you make it to the clinic for your blood test?” I asked.  “Yeah.  Hahaha.”  Nicholas’ helpers don’t interrupt our conversation to provide background info unless I ask them to.  Nick has a few words that he uses to great advantage and we can always figure out what he wants to communicate, eventually.  After a while, the story came out.  He had been to the clinic and was placed in the queue behind a middle-eastern family of twelve.  Apparently, Nick was highly entertained by the confusion and shouting that ensued when doctors’ orders, health cards and children’s names were mixed up.  Nick thought the waiting room drama was hilarious!

It takes time to look after young children who refuse to hurry.  It takes time to help my Mom get dressed and help her with banking or groceries.  It takes time to understand Nicholas when he tells regales us with a funny story about something exciting that happened in his day. 

It takes the time that it takes.  For me, it’s precious time well spent. 

Wednesday, 20 August 2014

The Film 'Boyhood': Reflections on Holding On and Letting Go

A date night with my husband Jim doesn't happen often.  We have fallen into our habits of cooking dinner together, followed by reading or watching a British television drama.  Sometimes, though, a movie or play catches my eye and I peek out of my turtleshell long enough to organize an escape from my comfy chair at home.

This week, we saw Richard Linklater's new film, 'Boyhood'.  I'd seen the word 'masterpiece' attached to the project, but it was the idea of a film being made about a boy growing up over twelve years that captivated me.  At first, Mason (Ellar Coltrane who plays the boy) is aged five and after 2 and half hours in a darkened theatre, he has matured to age 18.  Mason's compacted boyhood shows us ourselves and presents to us the richness of 'normal' family life.  For me, it was a powerful reminder that the entire moral universe is contained within the ordinary.

I am 59 years old.  Jim has retired from his demanding diplomatic career.  Over the past couple of years, we have learned hard lessons of trust as we tentatively put our son Nick's care into the hands of others.  Our daughter Natalie has moved to Delaware in order to pursue her studies.  Today, we are contemplating selling our family home in Ottawa in favour of a country lifestyle on the water about 20 minutes away.  As I look at our basement full of children's sleds, baby clothes and disorganized boxes of old photos, I reflect on the themes in 'Boyhood' and what they mean to me.  (Caution - there might be a few spoilers here.  You may wish to see the movie before you read this.)

Loving Relationships: Joy or Incarceration?

A young and beautiful Patricia Arquette (the single mother) explains to her impatient date that the babysitter has cancelled.  "Don't you think I WANT to go out sometimes?!" she wails.  "I have responsibilities!  I lived at home with my parents' rules and then I had babies... I have NEVER been able to just go out!!" Next, we see this young mother with her children snuggled into bed together (her date has given up and left) as she reads a storybook infused with an intimate, secret code of affection.

My book is called "The Four Walls of My Freedom" - the title comes from a quote by the American philosopher and Trappist monk, Thomas Merton.  In his diary, The Seven Story Mountain, Merton describes the moment that he entered a monastery to find spiritual enlightenment this way: "Brother Matthew locked the gate behind me and I was enclosed in the four walls of my new freedom."

Being 'responsible' for vulnerable loved ones certainly felt like a prison sometimes to me.  There were days that I felt furious and impotent with my inability to make personal choices or to act spontaneously... ever.  But I was always seduced again into laughter and optimism by the smell of my children's hair, the touch of their fingers on my arm or the whispers of their secrets in my ear.  These are ordinary ideas and experiences that mothers talk about all the time.  They are rarely examined in film, probably because we don't count them as important.  But, they are.

Holding On and Letting Go

Childhood. Adolescence. Adulthood.  Parenthood.  These life stages contain roles we constantly struggle to hold tight or to release.  The complicated transitions of growing up are closely examined in this film and made plain by symbols and metaphors.  As Patricia Arquette packs up her young children and drives away to a new (better) life in another city, the boy muses about their lonely collection of toys abandoned on the front lawn.  "They were not worth bringing with us, but they were too good to throw away."  The poignancy of the toddler's plastic basketball hoop left behind wasn't lost on me.  Boyhood is fleeting.

What are the meanings in our normal life transitions?  What objects can we keep to remind us of those meanings?  When we let go of our childhood mementos or our dependent relationships, what is left?  In her last scene as the mother, Patricia Arquette has broken free of her 'responsibilities' and her 'four walls'.  Her children have grown and gone.  But, what remains for her except old age and death, she wonders.

Normal is Noble

There was a scene in 'Boyhood' when Ethan Hawke (the actor who plays the birth father of the boy and his sister) lectures his teen daughter about contraception.  "Oh", I nodded, "here's the foreshadowing of an unwanted pregnancy drama."  But the girl didn't get pregnant.  Near the end of the film, the boy (now 18 years old) is driving down a highway on his way to a new life, apart from his family home.  "Right.  Get ready for the car crash." But it never came.  No, these are good (not great) kids living a normal life.  But here's the thing - normal isn't boring.  It's fascinating... riveting, even.  This film compels us to find the meaning in everyday life, specifically family life.

Recently, I had a conversation with a wise colleague in the social change movement, Vickie Cammack.  Vickie was telling me about an interview she gave for radio.  The host asked her what was required for people to survive and be happy now and into the future.  "Being intentional.  Intentional about our relationships and the way we live our lives," was Vickie's response.

I felt wistful at the end of 'Boyhood'.  I felt that perhaps this boy and his family had not be intentional and that their way of moving through life was like a leaf being blown by the wind.  Perhaps that expectation that fate will take care of us is at the root of our collective contemporary discontent.  I'm convinced that Vickie is right - we need to be more intentional.  What would 'Boyhood' look like with that overlay?  I'm not sure, but the characters in this film are a testament to the old adage that you don't know what you've got till it's gone.

After the film, Jim and I went to a local diner for tacos and beer.  Brown paper was the tablecloth and a couple of crayons invited us to leave our mark.  Jim scribbled his name on the table as we waited for our order to arrive.  I wrote 'Donna' beside his name and drew a heart around us.  Between our names, I crayoned the number 37.  That's how long we've been married.

Have we let our lives waft along unnoticed?  Have we spent time wishing to be apart, free and somewhere else?  Yes, I think we have sometimes.  But we have sought meaning in our daily lives too, and we've found it there.  Like in a movie date with my husband and father of my children.  People like us who spend a great deal of time caring for the needs of others are natural miners for meaning in life.  We exist in 'the spaces in between'.

My Mom used to stand in my bedroom doorway, hands on hips and scan the jumble of clothes and books on the floor.  "What is the meaning of all this, young lady?" she would demand.  "I don't know", I would tell her now.  "But I'll watch Boyhood again and maybe I'll have the beginning of an answer."
Pregnant with Natalie in 1991.

London, 2010

Friday, 15 August 2014

Caring for Someone with Meningioma (Brain Tumor)

A friend of our family passed away from meningioma, so I was pleased to host a guest post about caring for a loved one with this type of brain tumour.

This is a Post by Jan Vespremi

Treatment Options For Meningioma

First, let’s talk about the science. As a caregiver, understanding the science of meningiomas—while it doesn’t negate the stress that comes with what we do--can help alleviate some of the emotional issues that come up, especially with meningioma patients.
The Science
Meningiomas are intracranial tumors that originate from arachnoid cap cells in the thin, spider web-shaped membrane surrounding the spinal cord and brain. Although the majority of these tumors are non-cancerous, untreated and undiscovered, they can slowly grow and, in some locations of the body, can be disabling or even life threatening. According to the National Cancer Institute, meningioma accounts for 27 percent of all brain tumors; and 30.1 percent of all CNS (central nervous system) and primary brain tumors.
Genetic factors are the biggest cause for meningiomas, with radiation exposure following not far behind. Some research says that changes to hormones (estrogen and androgen) during pregnancy could accelerate the development of meningiomas. It is also thought that previous head traumas could lead to the condition at the injury site; and viruses could encourage the development and growth of the tumor. They can also be found in places with skull fractures, and those where the surrounding membrane is scarred due to an injury.
Most of the time, the symptoms brought on by meningioma are a direct result of the location of the tumor. For example, someone who has optic nerve meningioma will have to deal with vision loss (most commonly in his or her peripheral vision), while someone with an olfactory groove tumor will have issues with his or her sense of smell and, potentially, vision problems.
As a caregiver, it is the parasagittal and falx tumors’ symptoms that will most likely impact how you care for and relate to your patient. This is because, depending on which part of the brain these tumors set up shop, your loved one could experience seizures, numbness or weakness and problems with cognitive ability like memory and reasoning.
Caring for Someone with Meningioma
One of the hardest things for someone who is diagnosed with this type of tumor is that, often, it is inoperable. Radiation therapy can help shrink the tumor and slow down its growth but, ultimately, it will keep coming back, symptoms will recur and there isn’t anything that the patient can do about it. That can cause many patients to become very depressed, which is understandable. After all—would you want to have to go through radiation therapy over and over again for the rest of your life?
It’s also likely that your patient will be very angry. These tumors, because of how they are formed and where they like to set up shop, are often misdiagnosed when symptoms first appear. Your patient may have spent years dealing with misdiagnoses and failed treatments and they may be looking to lash out at someone. Caregivers are often seen as the safest people to lash out (as you already know!).
Tips for Coping
Try to remember that, in some cases—as much as this is cribbed from Grey’s Anatomy—it really will be “the tumor talking.” If you are new to caregiving, this can take some getting used to. It is hard not to take the lashings out of someone personally.
Be proactive. The biggest issue with meningioma patients, as already discussed, is that their symptoms reoccur and are often misdiagnosed. Work with the patient’s doctor and family to figure out what is “normal” behavior and what might be a sign that the patient needs to be seen earlier than his or her next follow up.
Don’t forget to take care of yourself! Caregivers—whether professional or family or friends who are taking this on for the first time—often put their own needs absolutely last. But, just like with child care, you cannot offer the kind of care you need to offer if you are operating at a deficit. Use the Distress Assessment to help keep track of your own self-care. 

Jan Vespremi is a freelance writer and work from home mother. She loves DIY projects - and always sees them through to the finish. She most enjoys writing about health, crafts, and anything else that sparks her interest.