After these performances, many of the passengers patiently waited to share their stories of dementia. One woman, however, was apathetic. She asked Martin and Murray why she should care about dementia. Although Martin had read countless books, spent days at a geriatrics clinic, sat in on support groups, participated in a six-week workshop with the Alzheimer’s Society of Nova Scotia and even physically prodded human brains, she didn’t know what to tell her.
The woman’s retort lingered with the duo after they had pulled into Vancouver and had settled into their hotel room. Talking about it, the song “The Promise” emerged.
The song broaches the complicated aspects of caregiving. Backed by a lament of distorted guitars and a driving drumbeat, Martin, with her East Coast Music Award and two-time Music Nova Scotia award-winning voice that recalls the bourbon tones of Lucinda Williams, powers through the song’s bridge: “Time has its own way/ Of making you stay/ Before you can say/ Please don’t hide behind cool judgments/ You make your own choices/ And shut out small voices/ I know you made her a promise.”
“The Promise” will be released later this month as part of Martin’s Remember Me project, which is being unrolled on her website christinamartin.net/rememberme every Monday through January as part of Alzheimer Awareness Month. In all, Martin and Murray recorded five tracks inspired by her residency. Along with each track, Martin has asked those living with dementia, their family members, friends and partners in care to participate in Remember Me by sharing their experience with dementia through photographs, written stories or videos. The first track, “Remember Me,” and stories were released on Jan. 6.
The project is part of a larger shift in the narrative of dementia, beyond the stories of tragedy, sadness and fear that have stigmatized the syndrome. Across a variety of media, the arts are finding a more nuanced dialogue, wherein dementia is fertile ground to discuss what it is to be human.
“When people are going through something like (Alzheimer’s) it just makes your encounters with people very important, everything matters – and that’s what I like about life,” says Martin.
Christina Martin was born in Fort Walton Beach, Fla., but moved back to Canada with her family at the age of one for reasons that were never made clear to her. Such as it was in her family – there were many secrets, many of them harmful. Her family soon ended up in Rothesay, the well-heeled suburb of Saint John. The mansion in which they lived belied their family stability. Martin’s father, Robert Martin, had bipolar tendencies and a love of alcohol and women. He was also floating cheques, committing bank fraud.
When Christina was 11, her father went on the lam. Her mother moved with the children to Grand Falls to raise them on her own, although they remained in contact with their father. Martin left home when she was 18, moving to Nova Scotia.
She began performing professionally in 1999. Her early albums – Pretty Things (2002), Two Hearts (2008) and I Can Too (2010) – drew upon the ramifications of her upbringing. Her songs became a way for her to work through her issues. In 2010, she explained her songs as coming “from a place of pain.”
As well as offering therapy, Martin’s songwriting also helped her develop emotional honesty.
“I use songwriting as a way to understand what is going on in every situation or anything that interests me,” she says.
She put this to new use on her latest album, the award-winning Sleeping With a Stranger (2012), using her songs to tell other peoples’ stories. The Remember Me project pushed her even further.
“This project wasn’t depressing for me. It was inspiring and real. And I think a lot of people crave these real experiences.”
She remembers one geriatrics nurse asking her, “Why do we love doing this so much?” Knowing the emotional turmoil dementia presents, it was a hard question to answer, but one Martin feels she understands. As a musician, she says working with dementia, as scary as it was, made her better.
“It gave me a lot more to think about that I don’t think about while on tour. I lost my brother last summer. I know what that means for someone to be ill, sick and struggling, and wanting to help them or not knowing what to do.
“For me, (Remember Me) really brought me back to the stories that matter in other people’s lives. (The songs) are totally a reflection on the people observed doing their work and the people that let me come into their lives. It’s just reflecting what they go through, and what we all have to go through at times.”
Christina Martin, embarrassingly underdressed for the annual Christmas party held by business magnate Fred Fountain at his South End Halifax mansion, in 2009, was killing time before her set, standing next to the lavish shrimp table. It was about an hour before she was scheduled to perform for the guests when Kenneth Rockwood cornered her.
Martin is used to people introducing themselves to her, but Rockwood was by no means the average fan. A “rock star of delirium and dementia,” Rockwood is a gerontologist, professor at Dalhousie University and director of Geriatric Medicine Research with Nova Scotia’s largest health authority.
Given the emotional complexity of Martin’s work, Rockwood thought she would be ideal to write a song for a documentary he was helping make on John Gray, the doctor who helped pioneer geriatric medicine in Canada and oversaw the creation of the division of geriatric medicine at Dalhousie University.
Martin had already been talking with her then-boyfriend Dale Murray about getting into soundtrack writing. She jumped at the opportunity Rockwood was providing, writing “Take Her Hand” in time to perform it at an international dementia conference in Toronto in March 2010.
Pleased, Rockwood asked Martin to write another song, more targeted to Alzheimer’s and health-care professionals. The result was “Remember Me.” Soon after it was recorded, Rockwood invited Martin to become artist-in-residence at the Memory Disability Clinic, QEII Health Sciences Centre, Halifax. Martin became the first musician, after a series of visual artists, to hold the residency (2011-12).
Rockwood describes the residency as“a bit ad hoc.” A resident is selected whenever there’s enough money, with financial support coming from various philanthropic donations (though Martin’s residency was funded with some tax dollars by way of the Canadian Dementia Knowledge Translation Network).
Rockwood founded the residency in the mid-1990s out of concern that the medical field was preoccupied with testing new drugs rather than patient and family care. He felt that the best model to understand dementia was the patients themselves, and that specialists like him should be paying more attention to them.
He raised these concerns with his friend Jim Morrow, artistic director of Mermaid Theatre of Nova Scotia, who suggested bringing in an artist’s perspective. It struck Rockwood as an idea worth trying.
The project was immediately illuminating. The first artist he chose, Jennifer Hiscox, made a painting inspired by a moment in which Rockwood mishandled a situation by going too fast and too far with a patient. That outsider perspective was so powerful, Rockwood still uses the work as a teaching aid.
“It’s not guaranteed you’re going to like everything you see, but the worst part of the Alzheimer’s experience shouldn’t be an occasional reminder of how bad it gets,” says Rockwood from his home study. He’s looking at a painting he bought from former resident Mitchell Wiebe. It’s of the hippocampus, an important part of the brain for memory.
“It’s more or less portrayed as pebbles on a beach,” he says. In Rockwood’s reading of the painting, the image represents how, “we’re standing on the very edge of a very vast space we’re trying to understand.”
Other resident artists so far have included Renee Forrestall, Rose Adams and Sarah Maloney. The works, which adorn the walls of the Memory Disability Clinic, have been exhibited in group shows across Canada, the United States and Australia.
But more than international acclaim, Rockwood wants the artwork to help society better comprehend what’s happening with dementia by offering a “broader, more nuanced means of engagement.” While the arts are regularly included as part of therapy with dementia patients, that is not the purpose of the residency. Rockwood believes there is something beyond the tragedy of dementia that can help everyone, the medical profession included, better understand it.
“There are lots of benefits we can have by being alert to what dementia is,” he says. “If we don’t pick up this challenge we’ll suffer, but if we do, we’ll benefit.”
On Dec. 11, 2013, Britain’s Prime Minister David Cameron declared the day “as the day that the global fight-back began.”
Cameron was addressing the members of the G8 meeting for the inaugural Dementia Summit at Lancaster House, London.“(W)e meet with realism about what we face but with the determination to fight this and the real hope that one day that fight will be won.”
That the members declared the goal to “develop dementia cure or treatment by 2025” monopolized headlines around the world. Cameron’s emphasis on realism wasn’t so heartily reported, though he termed “helping those who live with dementia to live well, and live with dignity” as critical.
The fact is there is a new case of dementia in the world every four seconds and there is no known cure or cause. In Canada, dementia looms as potentially as crippling to the health care system as it is to the human brain.
In December, the Canadian Medical Association called on the federal government to invest $25 million over five years to implement a national strategy on dementia. Canada is the only G8 member lacking a plan, even though it’s expected that 1.4 million Canadians will be diagnosed with the disorder in 2031.
In New Brunswick, the population of citizens over the age of 65 grew by almost 15 per cent from 2006 to 2011. As the numbers of seniors increase, so too do cases of dementia.
In response, the provincial government, as part of its 2011-2016 Nursing Home Renovation and Replacement Plan, pledged 704 specialized care beds to be created by 2017 for nursing home residents with Alzheimer’s or advanced dementia. With more than 10,000 people already living with dementia in the province, critics argue beds don’t begin to address every patient’s needs.
As well as beds, the provincial government announced in its November throne speech that work is in the final stages on a comprehensive new Home First Strategy designed to serve as a cornerstone of an integrated provincial system of health care and long-term care.”
While waiting for an action plan, the New Brunswick Alzheimer’s Society has taken a proactive approach, focusing on strategies to help families before they reach a medical crisis point. For Chandra MacBean, executive director for the society, speed is key.
Too often people delay proactive prevention and diagnosis until dementia has progressed to a dangerous level. And while some family doctors can diagnose dementia, most patients are referred to a gerontologist, of which there were only six in the province in 2011.
MacBean says it could be two months or a year before a diagnosis is made because of wait times, which means valuable time is lost when it comes to making the adequate planning she says is necessary for patients.
“It’s a perfect storm,”s ays MacBean. The society is hoping it can help by establishing First Link in New Brunswick, which it hopes to implement this year after April. Already in place in eight provinces, First Link offers newly diagnosed patients with resources in hopes to avoid financial, family and health crises later on. Where the medical system is focused on disease and illness, First Link is intended to prioritize the person.
In 2011, for the 10th annual Kathryn Allen Weldon Lecture on Alzheimer’s, in Halifax, Kenneth Rockwood presented a lecture sensationally titled “What if Everything Causes Dementia?” After 40 minutes, he emphasized what has come to define his work as a gerontologist:
“The change which we must engage in right now is the attitudinal change, which sees these people not as troublesome but as the very crucible, the challenge for us, the challenge that we must face, the way that we can shine.
“We are very fortunate to live in a very great part of a very great country with a lot of culture that tells us to honour each other and to honour older people and to help out the person in need. It’s all of those things which are going to be our great strength as we go forward to meet the needs of an aging population.”
Rockwood’s moral tone was set at the start of his career, training under and working with John Gray, who says, “It’s so essential, I feel, for the elderly not only to have confidence their doctor is competent, but that he is sensitive to them as a human being.”
Working with dementia brings Gray’s concern to the fore, as Rockwood says “dementia challenges how we define care.” For example, he notes how he and his peers test Alzheimer’s drugs by measuring brain size or studying an MRI.
“But none of those (findings) are concerns of the patient. We don’t spend time talking about their concerns.”
Unable to help, Rockwood believes there is solace to be found in learning something from his patients. This is the value he sees in the arts, offering a means to meet both scientific and clinical goals.
“I have patients I stand in awe of,” he says.“I often say to house staff who come through, ‘This is life itself. It will never be more real than this.’”
Up to now, Rockwood says, we’ve been able to view dementia from a medical standpoint. But he fears rising numbers, due to cost and demand, will make that impossible, and we’ll need new solutions.
“The challenge of dementia is unlike anything else. It’s comparable in scale to going to war in a lot of ways.
“Canadians value health care, so if we’re going to get to grips with this, we have to think in a new way. Normalize it. Think of ways people can engage in risk, because making everything look like small hospitals is not the way we want to go.”
Although there hasn’t been much change in public policy, Rockwood’s effort hasn’t been futile. Just the other week, he was at the grocery store with his wife when she turned the corner to find him embracing another woman who was weeping in his arms. Although it was an intense moment, they were tears of relief and thanks. The woman’s mother, a former patient, had succumbed, but Rockwood’s approach had made the experience something other than just a tragedy.
Despite her many family troubles, Christina Martin counts herself fortunate not to have dealt with dementia. Though, she did have a great aunt she once went to visit in a nursing home when she was very young. She remembers the uninviting atmosphere of the institution, and how her relative held a doll on which she was fixated. It was a confusing, frightening experience.
When she was a teenager, her first real summer job was at a nursing facility in Grand Falls. Her school guidance counsellor suggested she apply, and she was hired as part of the recreational team, trying to get the residents active.
Sometimes, Martin would just spend time painting the resident’s nails, which she loved. Other moments were more profound, like the woman in an advanced stage of Alzheimer’s who despite being bedridden and unable to organize her thoughts, would pick up the lines to “My Bonnie Lies over the Ocean” if Martin started singing. The words weren’t perfect, but her agitation would lessen. It was incredible.
Martin realized the power of being present with people, finding a connection.
So, she was fascinated to learn more about Rockwood’s clinic, but was also nervous about her residency. She was worried she’d be in the way, intruding on sensitive matters and important work.
But Rockwood and his team included her in everything they could, and the patients and families all agreed to her presence. Martin had to push aside her fears and focus. And though it was often emotional, she was determined to be innocuous.
Only once did she cry during a patient evaluation. She looked over and the nurse was crying too.
“You have moments like that,” Martin says.“It’s just a roller-coaster in there.
“(Rockwood) did give me the opportunity to debrief, and the first time, it was a pretty intense day, I remember him asking me, ‘Are you OK,’ and I was OK, but I broke down. I just started crying and then we started laughing, because it was just such a trying day.”
At the clinic, Martin would sit in on the various cognitive and physical tests a patient goes through upon evaluation or reexamination, as well as sit in during Rockwood’s diagnosis or update. At home, Martin would review her notes, work her way through the stacks of books and journal furiously.
She spent the first five months doing as much research as she could. But, in the end, she focused her music on what she does best, examining the personal relationship side of dementia.
“What I write about people, my stories, what I say, these are things that matter to me, the things I think are important.”
Since the fall, Martin has been living in Dachau, Germany, with Murray, on an artist residency with the city. She hopes to do something more with the Remember Me project but for now is happy to get the songs out there and share her listeners’ stories.
Sharing the stories became a crucial element, as part of her goal was to shift the naive popular perception that dementia destroys personality. It’s a stereotype Martin, too, took for granted before meeting patients.
“(Dementia) doesn’t eliminate that essence of who you are, what you are. That resonated with me. I guess it validated what I’ve always felt – that it was important, no matter what illness you had, to be respected, that if you’re in a room with them, or a clinical setting, you’re not ignoring them, to try understand things from their perspective.”
The notion that dementia doesn’t define an individual is a complicated one that many artists and writers are picking up. It forms the heart of veteran Halifax-based writer Jim Lotz’s recent book, Pilgrim Souls (Formac, 2013), about his wife’s Alzheimer’s.
Dividing the book into to two parts, family life before diagnosis and after, Lotz wanted to show, while there may not be identifiable causes, there are identifiable contexts.
“The person doesn’t suddenly change like breaking a leg or getting the flu, and Dr. Rockwood is very good at understanding the context, but a GP sees lives broken into 15-minute segments.”
Lotz wrote the book to help others realize a “surprisingly normal” life with Alzheimer’s is possible with a patient-centred approach, but it takes personal management, planning and creativity.
“The keystone I think is love, and you can’t program that,” says Lotz.“It’s just an incredibly harrowing experience, if you want to make it that way, but I never felt I was being a victim.
“That’s one of the things you have to remember – you cry, but you should think about laughing, too. … That’s the sort of thing we need, and not to be beholden to the experts. There is tragedy, but there is triumph.”
American poet Anna Evans explores the spectrum of the Alzheimer’s experience in her anthology, Forgetting Home (CreateSpace, 2013). She had written her own collection about working with dementia patient and wanted other perspectives beyond the “traditional” Alzheimer’s poem – a daughter ruminating on her mother no longer knowing who she is. Evans assembled as diverse perspectives as she could find.
She then structured and grouped the poems to reflect the various stages of Alzheimer’s.
“It’s one of the ways they can retain their dignity,” says Evans. “The person is still there. They are cognitively impaired, but don’t deserve to be treated like a baby or an idiot. They deserve to be treated like they’re still there, even if they can’t remember your name.”
In West Coast poet Jane Munro’s coming collection Blue Sonoma (Brick, May 2014), she addresses her late husband’s dementia, but it was imperative the poems not be a kind of therapy. She wrote the poems to be clear and strong, something quite the opposite of the acute grief from which she suffered as a caregiver. Though inspired by her experiences, the poems were meant to speak to something more.
“Grief is part of our experience as humans, and though it’s not something we welcome, grief and love are ways in which we pare away a lot of the other stuff that goes on in our lives, and get down to core issues. It’s not that we choose grief as the way to do this, or I would wish it on people, but it’s a mistake to think we can avoid grief. It’s part of our relationship with other people,” says Munro.
“I was interested in dementia as a metaphor for other stuff that’s going on in the world. … It’s interesting to me to see what happens to a person with dementia, but also as I look at human relations with Earth and one another, there’s a way of thinking about this that could be explained with dementia.”
Martin is still nervous about having appropriated the lives of the people she met during her residency, because of the responsibility that entails. Helping her overcome that fear is knowing that the stories haven’t been fictionalized.
“What wins over is the voice that says, ‘This is important,’“ she says. “You hope people connect with this, for people going through this. You know how good it feels when you’re sitting with people and they’re really listening. We need these things in life.”
Martin wrote the last song in the Remember Me project after seeing folk legend John Prine in Moncton. She wanted the song to be about the power knowledge and awareness can bring, even if it’s not necessarily a cure, and rewrote a chorus she had been working on to be from the perspective of a man experiencing early onset Alzheimer’s.
“I don’t have a personal connection at the moment, but when I sing (these songs) it does something for me, so when I sing them for other people it does something for them.
“That’s part of my job – to connect and validate. People aren’t going to come to my show or buy a CD unless they hear something that resonates. In palliative care, you’re making a connection with the way you caress or look in someone’s eyes – that’s what I do, too. It’s all about connecting.”s
arts & culture editor
To follow Christina Martin’s Remember Me project, you can visit her website at christinamartin.net/ rememberme. New songs will be updated every Monday in January, and new stories will be added regularly. To share your own story, song, video or photographs relating to dementia, you can contact Martin at firstname.lastname@example.org.
Remember Me by Christina Martin and Dale Murray
All of the warm romances
All of your summer dances
I know the places
They still live
Palaces made in foreign lands
I touch your wounded heart
Plenty of tears
In rooms filled with light
Oh sad day you’re gonna go away
Come some day
The grey and blackened skies will turn blue
And only the love will shine through
There you’ll remember me
Wearing an old red sun hat
We go through photographs
You sing your songs
And tell me tales
There will be fireworks and greed
Things that you never thought you’d do
Things that aren’t you
Don’t be afraid
Oh sad day you’re gonna go away
Dance around the room
See the stranger whose demanding a throne
Where love still shines through
And in this room you’ll remember me
The leaves are not the only things changing
And memories grow nearer day by day
Time will not erase lines where we climbed through
Oh sad day you’re gonna go away
Come some day
When all the desert skies turn grey
You’ll visit them in blue
And you will shine through
You’ll remember me
And you will shine through
You’ll remember me