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. 

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.