Tuesday, October 29, 2013

Beyond Compassion: Amanda Waring

Amanda Waring has a voice like a phoebe’s call: soft and sweet without being too sweet. In it, I hear echoes of her mother’s voice. She has a lot to say, and the words just seem to tumble out of her.

Waring is an actress (“A Month in the Country,” “All Creatures Great and Small,” and “For Love of Chocolate,” a one-woman show “where I get completely covered with chocolate and I perform a Jackson Pollack on the floor”), writer, film-maker, and advocate for compassionate care for the elderly. And it’s her work as an advocate that we’re talking about now. A member of Britain’s National Dignity Council, she goes beyond compassion to passion. Because for her, it really is personal. Waring was galvanized into action by the cold, impersonal treatment that her mother, actress Dame Dorothy Tutin, received in a National Health Service (NHS) hospital after being diagnosed with terminal leukemia. “I feel like a caged animal,” Tutin – remembered by many for her tour-de-force performance as Anne Boleyn in “The Six Wives of Henry VIII” (1970) – told her daughter.

The latter was horrified at how her usually strong, determined mother “aged and diminished visibly…the weight f[alling] off her and the light [going] out of her eyes.” She drove to where Tutin’s doctor lived: he was getting into his car, about to leave for a round of golf, but Waring “jammed the door open with my foot and said I would not go until he had promised she would be moved. On the day I smuggled mama out of the hospital – and it was a furtive exit because she was worried about creating a stir – she burst into tears of relief.”

Waring brought her mother to another hospital, where she received the kind of care she needed. Tutin came back into her own and had a year-and-a-half more with her family despite the doctors’ original three-month prognosis. She died in 2001.

                                          (Some of the faces of Dame Dorothy Tutin.)

Someone once said that perhaps we need to follow not our bliss but our heartbreak. And that is essentially what Waring did. She took her grief and transformed it into positive action. She made a short award-winning film, “What Do You See,” starring her mother’s friend, actress Virginia McKenna (“Born Free,” “Ring of Bright Water”). McKenna plays a stroke victim confined to a convalescent home. The aides talk over her, handling her with a rough matter-of-factness: to them, she is not much more than a fixture, another part of the job. Unable to communicate except through strangled noises, the elderly woman is nevertheless very much aware of everything going on around her. We hear her thoughts in a wistful, haunting voice-over by McKenna as she implores the aides to see her as the playful, laughing child and romantic young girl she once was…as the caring, sensitive person she still is. “You’re not looking at me --!” she silently cries, and they’re not.

“The reason I decided to make the film was that I was haunted by the faces of the elderly I saw,” Waring explains earnestly. “Love in care is not a dirty word, and loving care is what it’s all about. We’ve lost the understanding of the value of reciprocity. When you’ve damaged the spirit of the person, you’ve impaired their physical ability to strengthen their own antibodies, their ability to get well. So that’s why understanding this behavior – talking over somebody in the bath…mak[ing] them feel like a piece of meat, something to be done unto – is important.”

The film, which has been called “powerfully poignant,” was a finalist in the New Producer Alliance Awards. It has been screened at the British Academy of Film and Television Arts (BAFTA) and the Purbeck Film Festival and featured on “BBC Breakfast.” It has raised both awareness and funds for such charities as Help the Aged and MacMillan Cancer Relief. “What I anticipated as happening has happened,” Waring says. “It was such a leap of faith for me to sell my flat and make this film in memory of Mum. I feel very overwhelmed because I’ve received hundreds of e-mails and letters about how my work has positively impacted on care staff attitudes and transformed training.”

Another film, “No Regrets,” looks at things from the caregiver’s point of view. In it, a middle-aged woman visiting a convalescent home lets loose all the anger, guilt, sadness, and sheer soul-weariness pent up inside her. “It was the ups and downs that made it so hard,” she blurts to the silent elderly woman lying in the bed. “Looking at me as though I was some sort of skivvy.”

The films are a very important part of Waring’s person-centered care pack. But there’s even more to that pack. What she and her specialist consultant, occupational therapist Rosemary Hurtley, have created is a ten-step program aimed at hospitals, convalescent homes, and other elder-care facility staffs. The program is interactive, making use of a workbook, DVDs, and a CD-ROM of extras. And while it focuses mostly on the needs and rights of the elderly, there’s also a section designed for the caregivers themselves – “Caring for the carer: supporting and nurturing those working within health and social-care settings for the well-being of mind, body and spirit.”

Spirituality actually comes into play quite a lot here, making, as Consultant Admiral Nurse Karen Harrison Dening observes, for a “welcome inclusion in the pack….Developing a training pack on person-centered care and promoting dignity is a challenge in itself; but to also tackle ‘Spirituality’ is perhaps a greater challenge still, but, again, Amanda does this well.”

Waring, who has trained with Native American shamans, incorporates many of their traditions, especially drumming. “For me -- for most tribal traditions as well -- the role of an elder is seen as one of respect,” the actress-writer remarks. “Elderhood is not something to be feared but revered. So, wherever I go, I will take my drum and use the energy of the drum to honor all that they [the elderly] have been, all that they are, and all that they will be. Because I don’t work for anyone in an official capacity, I have the freedom to bring in aspects of spirituality from many different cultures to support the spirit through its final transition….It’s lovely to have whatever feels right in any of these rites of passage, whether it’s Reiki or sound healing or drumming.”

That “final transition” is something she comes back to near the end of our talk as she reflects on her most recent film, “The Big Adventure.” The adventure in question is death, and Waring has naturally given a lot of thought to it: “Death is not something we should shield ourselves from – it’s something we should guide ourselves through.

“This is a film that’s meant to be inspirational,” she continues. “I’m proud of all my films, but when I watch that film, I come away with a greater understanding of my own fears of death. I’m more compassionate.”

It’s a never-ending journey…one road branching off into another and then another, and all of them bringing her back to where it all started, with her mother’s final illness. “It’s almost like a wound that has granulated, that has healed,” reflects Waring, whose book, The Heart of Care: A Guide to Person Centered Compassionate Care (Souvenir Press, Ltd.), came out last year. “But every time I talk, I scratch the surface.”

Related link:

-- http://www.amandawaring.com


Robert Price said...

Beautifully and thoughtfully written.


T. J. Banks said...

Thank you, Robert. It's such a terribly important subject, and we definitely need activists like Amanda Waring in this area!

Gwynn Rogers said...

OMG, Tammy your piece is EXCELLENT. The movie and work Amanda Waring is doing is so, so NEEDED. I remember when my grandmother was in a Medicaid Nursing Facility with Dementia she was treated as a non-human. The staff didn't care about their patients. The inhumanity in some of the care centers in incredible.

My aunt just died last Saturday. She was in a lock-down dementia ward as my aunt had become violent. The place my cousins had put her has one of the worst reputations around for their lack of care.

The movie will make people aware of the desperate need of these patients to be treated with loving kindness rather than as an object that has been discarded.

Thank you for your EXCELLENT posting. I hope the entire world reads it!

T. J. Banks said...

hanks, Gwynn! I really wanted to do this interview, especially after all the discussions we've had on the subject in our LinkedIn group. What really makes you sit up and take notice is that this happened to a very prominent actress -- and that makes you realize how widespread the problem really is. My sympathies regarding your aunt -- both on her passing and what she went through beforehand.

T. J. Banks said...

Btw, Gwynn, that was "Thanks!" from the cyber-challenged Roo here!

Susan Scott said...

Lovely piece of important writing TJ thank you so much! Good on the Amanda's and Carol's of the world who know what being human is. Not only know but how to put into action what needs to be. Kindness and compassion - qualities that need to be 'out there' to be seen for the power they have.

T. J. Banks said...

Thank you, Susan! I agree with you about the Amandas and Carols of the world. There's this wonderful quote I came across years ago -- "A vision without a task is but a dream, a task without a vision is drudgery and a vision and a task is the hope of the world." These women have managed to bring the vision and the task together.

Amanda Waring said...

hi Amanda Waring here and so appreciate your comments and support of my work. I use powerful quotes in my work all the time by people who inspire me, now is the time to establish new futures and follow our passions to create the world we wish to see. As winston Churchill said " Never give up ! " xx

Amanda Waring said...

Thankyou so much for the support of my work xx

T. J. Banks said...

Thank you, Amanda. I think that this story of what you and your mom went through resonates with so many people because so many of us are caregivers in one form or another, and there really has been no script for us to follow. You have given us one!

Suzanne Kimber said...

Amanda, your work is inspiring and touches many so profoundly. It's refreshing to have your caring insights into the subject of death & mental /spiritual preparation & to be able to allow families to communicate their wishes while they are empowered to do so. The aged were once go-getters, role models, fantastic, exciting & interesting people in their own right... and given half a chance, still have a spark within to be ignited. Your work expresses your passion to allow a true level of care & consideration to be afforded to the elderley in a manner befitting them. Keep up your remarkable work! Beautifully written article.

T. J. Banks said...

Thank you, Suzanne -- it was a pleasure interviewing Amanda. I, too, believe in the work she is doing, which is why I felt this piece needed to be written.

Samantha Mozart said...

T.J., thank you for writing and publishing on this urgently important subject of the caregiver unafraid to face the care and dying of a loved one. Thank you, Amanda Waring, for taking positive action on your heartbreak and observations.

The aids' perfunctory attitude, talking over her as if she were a piece of meat, as if she weren't there, brings to mind Leo Tolstoy's ever poignant and timeless story, "The Death of Ivan Ilyich." Ilyich observes his family observing, or non-observing him, their superficial attitude towards him who is in pain and dying; he finds solace solely from the simple peasant who stays by his side and relieves his pain.

Much of the Hospice care for my mother, who suffered from dementia, in the end incorporated such caring practices as drumming, caring for the caregiver, seeing my mother for who she IS, not the ill person, respecting her dignity, giving her love, and guiding us both through that final transition, peacefully.

Thank you, Susan Scott, for noting me and my humble, and often bumbling efforts in this realm.

There is so much here, I cannot address all points. This piece deserves to be read again and then again.

T. J. Banks said...

Samantha/Carol -- You bring up some vital points yourself. And it was the discussions on caregiving in the group you started that led me to looking into Amanda Waring's work.
We are all, as we've said before, going to be caregivers at one time or another in our lives: it is difficult often nightmarish terrain, and we need all the help we can get. Both you and Amanda have given us that. Thank you!

Kathleen Janz-Anderson said...

Thanks for the post, Tammy. There are very good care givers out there, but that doesn't make up for the wrong that is done. This needs to be addressed. One subject that is dear to my heart.

T. J. Banks said...

Thanks, Kathleen. I agree with you 100%. Of all the nurses/aides at my mom's convalescent home, there was only one nurse, Debbie, who seemed to truly understand what being a caregiver was all about and the only one who radiated genuine compassion. She was the exception to the rule, and she should've been THE rule.

Yvonne Mahlape Maserumule said...

The inhumane way the elderly in our societies are often treated, without much intervention by those in authority, is heartbreaking. Your article is a sad reminder of this.

T. J. Banks said...

You're right, Yvonne -- we do not always seem to have the respect for the elderly that other cultures do. I think that Amanda's doing her damnedest to remedy that, and more power to her!