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. 

Thursday, 14 August 2014

What to Look for in a Nursing Home for Your Ageing Parents

Guest Post by Juliet Martin

When your parents get to an age that you believe they would be better off living away from their (or your) home in order to receive the care they need, when they need it, you’ll find many nursing homes available to you, but the question is; what should you look for when comparing these homes between one another?

It goes without saying that you want the best possible care for your parents. Price is, of course, always a consideration, but in general so long as the fees for any particular nursing home seem fair and relative compared to what your parents will get in return, you should put price out of your mind for a moment so you can concentrate on the features of any one nursing home in order to make your comparisons between them that much easier.

To help you get started, below we’ve detailed five of the key areas you should explore when looking up homes online, and eventually visiting them in person. Some of the points below may be more important to you than others, but in general the home you end up choosing should incorporate all of these points to some degree.

1) Person-Centred Care

Person-centred care is a type of care-giving that, according to The Health Foundation, “sees patients as equal partners in planning, developing and assessing care to make sure it is most appropriate for their needs.” Any nursing home you choose for your parents must put them, and you, at the very heart of all matters regarding their personal care; with your parents being treated as individuals, rather than simply residents.

Regardless of any illnesses your parents may have, if a nursing home practices person-centred care they will treat your parents as adults at all times, on an equal footing to themselves, and you.

2) Clear Preventative Safety-Measures

Safety prevention covers a wide spectrum and can include anything from the quality of the food your parents will be fed at their nursing home to their ability to easily access exercise equipment and join in on recreational activities (see point five) at their home.

Other preventative safety-measures you should look out for when visiting different homes is whether there are…

-        handrails along the walls,
-        wheelchair-accessible doorways around the home,
-        tidy floors, dry and free of litter,
-        fire extinguishers throughout the facility,
-        call buttons in the apartments and throughout the facility,
-        adequate heating and air conditioning systems.

3) Happy, Helpful Staff

It’s been said many times that people who are happy in their work are, unsurprisingly, better at their job and put more time and effort into their job. This is exactly what you want from the members of staff who work at a nursing home that your parents may eventually live in.

When you’re visiting different homes you should pay close attention to the staff, both when they’re talking to you and when they’re speaking with individual residents, unaware that you’re watching. Ask yourself:

-        Do they seem to genuinely care about and respect each resident they interact with?
-        Do they answer your questions honestly and in depth?
-        Is there a generally pleasant atmosphere about the home?

4) How Homely it Feels

This point seems so obvious that it often slips people’s minds when looking around potential homes for their parents.

As your parents will be living there full time, any nursing home they end up moving into has to have a homely feel about it, meaning it’s decorated in a fashion that they would like (and maybe even have in their current home), and it has all the standard homely pieces of furniture, such as armchairs, sofas, and coffee tables, dotted around the facility and in the individual apartments.

5) Wide-Ranging Recreational Activities

Despite their advancing years, your parents can and will enjoy being at a nursing home more when they have a wide-range of recreational activities available to them. These can include sporting activities, social activities, and (of course) therapeutic activities.

When visiting a number of homes ask the staff outright what activities they’re currently providing to their residents, and at what frequency. Popular activities may include:

-        swimming,
-        gym (available consistently),
-        weekly religious services for a wide range of religions,
-        quiz nights,
-        visiting entertainment, such as a musical performer or speaker,
-        speech, physical, and occupational services,
-        day trips to nearby (and sometimes, far away) towns and cities.

In conclusion, when it comes time for you to start looking into moving your parents to a nursing home you should make a point of doing your research online, first of all, before visiting some of your favourite shortlisted homes to see if they provide person-centred care, they have preventative safety-measures in place, the staff are happy and helpful, there’s a homely feel to the place, and a wide range of recreational activities are available.

Author Bio:

Juliet Martin a freelance writer for Ashton Grange Nursing Home in the UK, one of the most reliable providers of caregiver services in the country. They aim to deliver their philosophy of care through programmes of activities designed to encourage better health in the elderly.

Monday, 4 August 2014

Survival Skills for Stressed Out Caregivers

I've just come from our family cottage in the north woods of Quebec.  It's peaceful there - a place for reflecting and remembering.  My Nana built our cottage in the 1920s and my memories are of her making my toast on the woodstove with the sunlight dancing through the wood-framed window.

But the woods can be scary sometimes.  Once, I got lost.  I went for a walk by myself and followed a path I didn't know.  I was surrounded by unfamiliar wild meadows and swamps I had never seen.  Just the birds were my company and suddenly, I felt afraid.  It took me four hours to find my way home.  A caregiving life can be like that.  One day, everything seems normal and calm.  Suddenly, with a new diagnosis or tears that will not stop, we are lost without a guide.

Recently, I heard a wilderness survival expert on the radio.  Caleb Musgrave is an aboriginal Canadian who runs a company called Canadian Bushcraft.  He teaches professionals how to survive in the wild.  Apparently, these skills easily translate to the chaos of trading floors and the frenetic pace of high tech startups.  I sat down and began to listen more intently, thinking, "maybe there is something here for caregivers."

At about minute 23 in this episode of Definitely Not the Opera on CBC Radio, Caleb Musgrave offers his advice on how to move forward when things go terribly wrong.  "Survival in all environments is all the same thing.  It's 90% psychological.  It's all about how your mind deals with certain stresses at certain times."   When circumstances become hellishly hectic and challenging, Musgrave insists that in order to survive, you need to slow down and process what's happening.

So, what's Caleb Musgrave's secret to survival?  It's the process called STOP - Stop, Think, Observe, Plan.  Stopping is the first key element in Musgrave's stress survival training.  "Breathe, perhaps drink some water - your brain functions better with water,"  he advises.  Observe the situation.  What are the stressors?  Look around to see what might help you in your situation.  Then, plan.  "Do I ask someone to help me?  Can I manage this situation on my own?" Musgrave says that asking oneself all these questions helps to alleviate stress and lay the groundwork for helpful action.

Our aboriginal cultures can teach us many valuable lessons about family, survival and resilience.  This week, our family will be trying to get to the bottom of our son's recent symptoms of pain and seizures.  Just before we visit the neurologist on Wednesday, I'm going to stop, think, observe and plan.  Wish us luck.

Monday, 28 July 2014

Memoir of Mourning: Journey Through Grief and Loss to Renewal (Book Review)

Perhaps you fear losing the parent you care for.  Or maybe, you fear your own death as you care for your dying relative.  Maybe you just don't know who you will be when your loved one passes and leaves you alone in the world, without the identity of caregiver.

Claudia Chowaniec has wrestled all these demons to the ground and lucky for us, has imparted her experience in "Memoir of Mourning:  Journey Through Grief and Loss to Renewal."

This is a book about an intense and co-dependent caregiving experience - one that lasted many years.  As a teenager, Chowaniec cared for her mother through bouts of manic-depressive illness.  This was followed by more intensive caring when the elder Mrs. Chowaniec developed severe Alzheimer's and eventually succumbed to that terrible disease, leaving her daughter filled with guilt (Claudia was on holiday when her mother suffered a health crisis that would prove fatal).

This book is the product of diaries kept over years.  Chowaniec describes her writing process this way:

"Memoir of Mourning is based on memories and excerpts from the journal I began before Mom's death.  I scribbled down my thoughts - raw, intense and immediate - on what was happening in the hospital as I tried to communicate with the medical team, Is Mom dying? I recorded the end-of-life decisions I struggled to make, when out of the blue, the doctors told me they were discharging Mom because there was nothing more they could do for her and she needed palliative care.  The journal became the only witness to my anxious bedside vigil, What will death be like? as I watched her breathe, one breath, then another, and then no breath at all."

There are many reasons to recommend this book.  First, it is a diary, so if you want to know what witnessing death is really like, you will have a clear idea after reading Chowaniec's urgent prose.  There's poetry too, though.  Chowaniec is someone who writes everything down in order to understand it - and I for one, am glad she did.  The journey of love, dependency, identity, mortality and finally resilience is one that should be told first hand, not through the lens of imagination and memory.  The author shares what really happened, always in the present tense.  And it's easy to like Claudia Chowaniec and her mother.  The author generously shares their stories, their fears and their humour. Chowaniec's mother was a war bride who had fearlessly cajoled German soldiers into allowing her past a checkpoint with stolen groceries to feed refugees housed on her family farm.  This story and more, Claudia wrote down and as her mother's Alzheimer's progressed, she read them back to replay the events of her mother's life and keep memory alive.

I had lunch with Claudia Chowaniec recently and we talked about our mothers, about death and dying, and about caregiver identity.  We talked about the benefits of counselling and the satisfaction in counselling others.  I was sad to learn that after her mother died, Chowaniec's husband had been diagnosed with cancer.  Her caregiving journey is not over.  As we mused about our next books, I said a silent prayer that my new friend's spouse would fully recover after his latest round of treatment.

The intense personal drama of tending to a dying loved one is not a subject for dinner table chat.  It is life-changing and yet frequently, we do not have the experience or knowledge to decipher the many meanings in it.  Claudia Chowaniec has done the work and shared it for all who walk that path.  I am grateful that she did.

Tuesday, 22 July 2014

Advice for New Caregivers

Today's guest post is by Derek Hobson, BA.  Derek is the editor for, a senior care referral agency. He developed a passion for elder care when he became the primary caregiver for his grandmother. Since then, he has sought to inspire fellow caregivers as “there is no success without hardship.” 

When I was 20 years old, my grandmother was diagnosed with a slow progressing form of dementia. She didn’t need care immediately, so we had time to research options. We read books and countless articles, we swapped knowledge over dinner, and frequently talked to our grandparents about how everything would work out given our lifestyles. And yet, when the time came to provide care for her, I could not have been more unprepared.
Although I had a job, I was a full-time student, so work was primarily for a disposable income. Since the rest of my family had full-time jobs and my grandfather didn’t drive, I received all the phone calls and texts. I suffered from more stress than I’d ever experienced before. It seemed like my phone was buzzing incessantly and it was always to help my grandmother. I had to cut back my hours at work; I didn’t have time to spend with friends; I was falling behind in my studies. To make matters worse, I had no one to talk to about it.
I felt like I was not making a difference and that mindset was like a poison, making me grow more and more resentful – of my grandmother and my family. My family only called me if they needed something for my grandmother. I wasn’t getting enough sleep and ate more fast food than I care to admit. I did not understand sacrifice.
Despite all of the time I dedicated to figuring out how my day-to-day routine would change, none of it prepared me for how my lifestyle changed. And the only reason, my livelihood improved was because I started talking about it. From that, I’ve learned a few things to pass on to new caregivers.
  1. Tell Your Employer
No matter what your job is (and even if you don’t cut back on your working hours), tell your employer about the change in your life. If you do get that emergency call to help your loved one, they will be infinitely more understanding.
  1. Nap When You Can
Sleep becomes a challenge, especially if your elder is suffering from dementia like mine was. Their sleep schedule changes too – some of the worst emergencies happen during the early morning hours or mid-evenings.
So if you come home from work or school and someone else is taking care of your elder, then nap – you’ll be glad you did.
  1. Make Time For Yourself
There’s a good chance you’re not taking enough time for yourself. Even if it’s just a 15-minute walk every day, you need the air – plus, turns out a 15-20 minute walk does wonders for your heart.
My situation was a bit different since my whole family was working together. But you can always ask your in-home caregiver to stay an extra few minutes while you walk or a trusted neighbor. Don’t skimp on yourself.
  1. Eat Right
I’m not the only one who didn’t eat right. It’s a crisis among caregivers! If you talk to fellow caregivers, you’ll find that – for a time – no one eats well. However, making healthy meals and continuing to cook helps you regulate your time and you’ll feel better – believe me!
  1. Be Vocal And Ask For Help
This is the perhaps the most crucial for new caregivers. You need to talk about it. And I mean really talk about it – not just complain at someone. If you ask for help, you’ll get it. And you need to ask because It doesn’t matter if it’s a caregiver support group or a senior care service, we all feel selfish and guilty when about asking for help. We feel doubly guilty when we ask for help taking care of our elders, because we all know that eventually it is going to be rewarding.
Yet, one of the worst parts was reading about how rewarding being a new caregiver is and feeling like I’m the only one shouting, “When is it going to be rewarding?!”
But I’ve since learned that the reward isn’t something you get immediately and oftentimes, you won’t even feel it while you’re the caregiver… but when my grandmother passed away, I knew I did everything I could for her. I spent quality time with her that I would never have had a chance to otherwise. And there were days where she gripped my hand or smiled that old, familiar grin that let me know she was going to be alright.

That was rewarding.

Saturday, 19 July 2014

Setting Roles, Boundaries and Limits in Mothering a Complex Child

One day a few months ago, fellow disability Mom and writer Jennifer Johannesen sat down with me for a chat.  (I highly recommend Jennifer's book and her blog- they are at the top of my favourites list.)  In a previously published portion of our chat, I introduced Nicholas and our family life.

Here, I discuss the pain and joy in parenting a complex child as well as the perils of navigating the health care system to get the best treatment for our son.

00:05 – Distinguishes between parenting and the role of the therapist
01:41 – Discusses types of therapy and her right as a parent to make decisions
02:46 – Shares an example of how invested she was in therapy
04:27 – Identifies the moment when she realized what her role should be
05:22 – Cautions against allowing the parenting role to be overtaken by therapy
09:37 – Shares a story about poor communication of medical information despite her extensive experience
12:52 – Encourages parents and professionals to establish boundaries and role definitions
16:31 – Discusses ‘age-appropriateness’ for both the child and the parents
20:22 – Shares her son’s adjustment to moving away from the family home