Hope Lives in a Garden ...

Hi everyone! I hope your summer's going well.

This morning, while looking through my bookcase for something else, I rediscovered a special journal written by one of my best friends, Linda Vick. I had given it to her at Christmas 1996 and she had used it while at a Callanish Retreat for people living with cancer. Linda had lung cancer and she died about three and a half years before my husband. She left the journal to me when she died - a precious and cherished gift.

One of the things that Linda found difficult to accept after her diagnosis was the frequently used medical metaphor of white blood cells "attacking" her cancer cells to "kill" them and make her well again. I can remember her screwing up her usually-smiling face and telling me that she didn't like the aggressive, attacking images one bit and that it was much better for her to think about a loving, healing light in the area of her heart, a light that radiated throughout her body, turning all the cancer cells into normal, healthy, pink lung cells.

In an interesting spot of synchronicity, I rode up in the elevator from the parking lot at church later this morning with Helen Worley, an old friend of my husband, whom I hadn't seen since Derrick's funeral almost nine years ago. In the short distance between the parkade and the church office we quickly exchanged news, including the fact that Helen had been through two bouts with cancer, herself, and had just written a short whimsical book about her healing experience, told through the eyes of her stuffed monkey, Nutmeg, who had accompanied her throughout her treatments.

Helen, like Linda, had been uncomfortable with the notion of "fighting" a cancer diagnosis. Instead, she came up with a gardening metaphor as a holistic alternative. She saw her body as a beautiful garden, growing and changing and renewing, and the cancer as a weed needing removal. Once it was gone, her garden required careful tending and feeding to become restored and resilient again. A much better metaphor, in my opinion!

I bought a copy of Helen's book before coming home and settled in with a cup of tea for a lovely, gentle read. Hope Lives in a Garden is a simple, honest, touching reminder of what really matters when it comes to being well and whole. A good gift for people living with cancer and for those who love them. If you're interested in purchasing a copy (the proceeds go to Callanish Society, Vancouver, PeaceHealth St Joseph Centre for Integrative Cancer Care, Bellingham, and the Lung Cancer Research and Education Fund, UW, Seattle), just click on the title above.

Unfinished Song ...

Hello, everyone! I went to a Saturday afternoon matinee at the Fifth Avenue Cinema in Vancouver this past weekend and saw a wonderful movie I'd like to recommend to you. If you are a family caregiver or a helping professional wishing to understand the caregiving experience a little better, this is a movie to see - though you'll want to take along a box of kleenex if you're anything like me and my friend, Sandra.

Unfinished Song (or A Song for Marion, depending on where you live) is a 93 minute British - German production starring British actors, Vanessa Redgrave and Terence Stamp. Set in a dreary English council estate (public housing), the story describes the experience of a family dealing with the end-of-life. Marion has cancer. She is also a member of a senior's singing group called the OAP'z (Old Age Pensioners - with a z rather than an s for added pizzaz!) As she realizes that the only treatment left to her is "going home and eating all the chips and ice-cream she wants", she becomes motivated to join her group in a national singing competition.

Arthur, Marion's husband and primary caregiver, and a man who shields himself from all but her through gruff anger and withdrawal, loves her deeply and is terrified by the possibility of losing her. He worries that all the singing practices will be too much for her and he tries to convince her to stay home. (A familiar conflict among so many caregivers and care recipients.)

In a parallel storyline, we see that Arthur's earlier life experiences and British stoic mentality, have led to a parenting style that has both hurt and alienated his son, James. James, in turn, is doing all in his power to raise his own daughter with a more open heart. The interventions of the young singing group leader, Elizabeth, eventually create space for healing and moving on. I won't spoil the film by telling you the rest of the story - I hope you will go and see it for yourselves.

What I will say is that the main characters are impeccably acted by Redgrave and Stamp, to say nothing of the quality of acting by other three main characters. Terence Stamp manages to portray the anxious, raw, irritability of caregiving, and it's underlying chronic sorrow, to perfection. Some of his conversations with Marion could have been mine with my own husband, so authentic were they. The elegant, articulate and beautiful Vanessa Redgrave risks looking and acting the part of an elderly woman in the late stages of cancer and she does it understatedly and superbly.

I would be remiss if I didn't also mention the energy, humour and wonderful voices of the seniors in tie-dyed T-shirts, singing choral arrangements of Metallica, who make up Marion's singing cohort. You'll find yourself smiling all over your face as you watch them sing and catch their zest for life.

While the plot is a little predictable, Unfinished Song is a rich and honest story that Huffington-Post  reviews like this:

Yes, it's a weepy one. But it's also a really good rich tale that builds ideas and deepens characters until the heartstrings snap and you can't help but cry. It's good to feel stuff. And this movie is full of the best sort of feelings.

I guarantee that it won't be long until this lovely movie finds its way into one of my caregivers workshops. Enjoy!

New National Guidelines for Supporting Mental Health Family Caregivers ...

Hi everyone! My apologies for this late post but I've had a weird virus resulting in a splitting headache, sore throat and laryngitis. You  don't realize how much you use your voice until you can't use it! But I digress ...

I have some good news to share with you this morning - the Mental Health Commission of Canada has just published National Guidelines for a Comprehensive Service System to Support Family Caregivers of Adults with Mental Health Problems and Illnesses. If followed, this document could make a significant difference to all family caregivers working to support adult loved ones with mental health issues.

The guidelines seek to recognize and support family caregivers' needs and to provide evidence-based best practices and advice to policy makers and service providers. They also include recommendations that are intended to help caregivers maintain their personal wellbeing.

Here is a summary of the general recommendations:


Integrating Family Support into Mental Health Services - General

1.  At each contact with the mental health system, require service providers to assess the needs of family caregivers and encourage them to become appropriately engaged in their relative's care.

2.  Provide family caregivers with timely access to appropriate education that responds to their needs at different stages in the illness and caregiving trajectories.

3.  Make evidence-based family psycho-education programs and encourage them to participate.

4.  Expand access to family caregiver associations available in all communities and ensure that they receive funding that reflects their role as a key source of support for family caregivers.  

 5.  Make access to evidence-based family therapy from certified and regulated clinicians when needed.

6.  Require service providers to include family caregivers in treatment planning where appropriate.

7.  Assist family caregivers by routinely using validated instruments to identify and assess their needs and help them to develop self-care plans based on the assessment.

8.  At the time of initial diagnosis by a mental health service provider, provide timely information relevant to each stage of the mental illness to caregivers and include information about the illness trajectory, evidence-based treatment options, privacy laws, services available and guidance on supporting recovery. Emphasize self-care for caregivers.

9.  Require mental health inpatient and outpatient services to improve the provision of information about the availability of psycho-education programs and encourage family members to participate in these programs.

10.  Develop information and tools for family caregivers on personal and financial planning. Encourage families to engage in this kind of planning as early as possible and provide them with support to do so at various points of service such as family caregiver organizations and notary offices.

11.  Develop dedicated family coordinator role, within or outside the hospital system, to plan, develop and coordinate family support services where possible and build the capacity of mental health services to recognize and meet family caregivers' needs 

If you're interested in reading the partnership and public awareness guidelines as well, you can find them here.