Memory Bank

Home really is where the heart is; even if home is an entire continent away. As an only child, Morag Whitfield has orchestrated and perfected a complex system of care for her mother, Pauline, who is living on her own in Edinburgh, Scotland, six years after being diagnosed with vascular dementia. Add to that accomplishment the fact that Morag lives here in Vancouver, and what you've got is a story of inspiration, devotion, tenacity, and incredible organizational skills.

Morag grew up in the very house where Pauline still resides. Her father worked for a nearby electronics firm while Pauline managed their home. Morag recalls her childhood experience as a "free existence"; at the time their home sat on the border of a small village on the outskirts of Edinburgh surrounded by farms, crops, pastures, parks and woodlands. Fifty-four years later, houses stand where the sheep used to graze and regular bus routes have replaced the train into the city. Life for Pauline is very different now, but she is adamant that she isn't leaving her home.

As a child, Morag received a lesson in culture like no teacher, classroom, or textbook could ever offer—an experience that changed her life forever and would ultimately contribute to her decision to immigrate to Canada. At the age of ten, her father accepted an opportunity to work in India for two years. The voyage to and from India by boat was what Morag refers to as a "cultural awakening" as she and her family visited Gibraltar, Pompeii, Egypt, the Suez Canal, Aden and Pakistan. Not surprisingly, things were very different for the Wilson family in India; most notably, Morag was the only white student in her school: "I would be very different today if that hadn't happened."

Morag finished high school back in Scotland, obtained a science degree from the University of Edinburgh, married her husband, Michael, and had two daughters before moving to Canada. The social unrest in Britain in the late 1970s proved difficult for Morag. Living as a visible minority in India left her acutely sensitive to multicultural issues and deeply intolerant of any kind of racial marginalization and stereotyping. Morag and her family moved to Canada when Michael was given an opportunity to work in Toronto for a year. They then decided to settle in Vancouver in 1981. Morag's parents were sad to see their only daughter leave: "I don't think they were entirely happy with us moving away, but they did come for holidays every year…for three months after my father retired…they really liked it here." Sadly, in 1991 Morag's father died, leaving Pauline alone at home in Scotland. By 2001, Pauline realized that the increasing memory problems she had been experiencing since her husband's death were probably not just a result of normal aging. A CAT scan confirmed her suspicions: she was suffering from vascular dementia.

Since her mother's diagnosis, Morag has worked tirelessly to organize and sustain the intricate network of care providers whose services allow her mother to maintain her independence at home. She is thankful that the healthcare system in Scotland favours homecare rather than residential placement, so her team of carers really focus on working together to maintain Pauline's health, strength, and safety in her own home for as long as possible.

Morag is on top of every detail of her mother's life. She takes a positive team-building approach to organizing care, knowing that that is the key to having everyone on board and working towards the same goal. "I make changes from a positive point of view, thank people, praise people for their efforts and kindness, then everyone feels like they are on the same team. I appreciate everything people do, whether or not it is how I would do it myself." One can only imagine how much trust Morag invests in the people who are responsible for her mother's day-to-day care: "You have to rely on other people to do the things that you, yourself, in your own heart, feel you should be doing." Over time she has developed close working relationships with many of her mother's carers, including her doctor, social worker, dementia care nurse, homecare workers and day program coordinators. One homecare worker in particular has taken a lead role in Pauline's care, and is in regular communication with Morag, both by phone and e-mail: "Denise takes my mother to the bank and the hairstylist every week, and also does all her shopping for her…all in her own free time…she is a total treasure…a really caring person…without her, this system would now fall apart." Morag acknowledges and appreciates the great improvements in her mother since being under such top quality care.

Every aspect of Pauline's day-to-day care is organized in such a way that whatever she needs happens automatically without any prompting. This includes assistance with regular daily activities and personal care, filling prescriptions and having them delivered, administering her medications safely and at appropriate times of the day, ensuring that she consumes the three nutritional supplements prescribed to help maintain her weight and intake of essential vitamins and minerals, transportation to and from day programs, bill payments, shopping, etc. The system that makes all of this happen in Morag's absence works just like a well-oiled machine. Each individual is essential in making the entire system work, all members of the team have to work together to make the entire system successful, and the breakdown of one component could mean the breakdown of the entire system, which is a constant source of worry. Morag equates the process to juggling: "I think, in fact, all of the balls that could possibly be up in the air with my mother are all juggling around there very nicely…it would only take one of them to drop for things to start unravelling, so I am constantly keeping a check on everything, making sure everything is working." However well setup this package of care seems to be it does not reduce the guilt that Morag feels that she is not in Scotland caring for her mother herself. At all times she keeps a bag packed with the essentials in order to leave immediately in case of emergency and she always provides contact telephone numbers to the care staff when she is away from home.

Despite the fact that she dislikes flying, Morag travels to Scotland two or three times a year, and usually stays for three to four weeks at a time, and up to seven weeks if house maintenance is needed. "When I'm there, it’s incredibly intense because you have to get everything in place, you have to get everything up and running, and you have to make sure that its going to run without you before you leave…things have to fall into place very fast while I am there." The financial costs involved in caring for her mother at such a distance are high. In order to avoid disturbing the delicate balance and routine that has been established in Pauline's daily activities, Morag stays at a nearby Bed & Breakfast for the time she is there, and rents a car to get back and forth to appointments. The owners of the B & B have become a very valuable source of support for Morag. Over time, they have become like surrogate parents to her, knowing exactly when she needs a nice hot cup of tea and a sympathetic ear after a stressful day.

Although e-mailing has eased the impact of long-distance phone charges, there are still times when Morag feels she needs immediate feedback from care providers. The eight hour time difference means calls have to be made very early in the morning to catch people before they leave their office for the day. Communication has become easier over the past six years, however, as e-mail communication has become more widely used by care agencies.

Morag is deeply immersed in her caregiving role, and has put many aspects of her personal life on hold as she dedicates her life to being the "ringmaster" in her mother's care. She admits that aspects of her life here in Canada are largely pre-determined by having to go to Scotland so often: "Its like living on a merry-go-round … you can't actually get off it…constantly spinning from one existence to another without having a chance to stand still and really feel in control of anything." Typical of Morag though, always looking on the bright side of things, she is thankful that her children are grown up and independent, and that she does not have to worry about organizing their care as well.

Morag often worries about her mother's safety, worries about people taking advantage of her mother when she is not there to stop it, and is fearful that ill-intended strangers might “con” their way into her house. She certainly acknowledges and appreciates the help she gets from neighbours who keep a watchful eye on her mother as much as possible. Morag often feels pressured by others to place her mother in residential care, but she respects her mother’s wishes to stay in her own home and so she is working tirelessly to keep her at home, safe, healthy, and occupied as long as possible. Her mother’s abilities and disabilities are in constant change so Morag is continually monitoring and adapting the “care package” to adapt to the changes. At some stage residential care will become necessary, but identifying that exact time is very difficult.

By attending caregiver support meetings here in Vancouver, Morag recognizes that the stresses involved with long-distance caregiving are very different than those of caregivers who are with their loved one on a daily basis. In contrast, long-distance caregivers experience short bursts of very intense stress, which for Morag occur when she spends her time in Scotland trying to get all of the things done that need to be done in a very short period of time. For example, along with meeting doctors, pharmacists, social workers, and care providers while she is there, Morag also looks after such tasks as hand-washing sweaters, washing the curtains, defrosting the freezer, cooking and dividing meals into individual portions, small home repairs, financial management—things that might ordinarily be done over an extended period of time. She takes on the responsibility to do these things while she is there in order to maintain everything in Pauline's home the way it has always been, which helps maintain Pauline’s autonomy: "In a way, I'm the only person in the world who can do it… because I'm the only person in the world who has lived in that house, knows where everything is, and knows where everything should be…there will be a window where my mother suddenly remembers where something is so it should actually be there when she goes to get it."

Morag believes her science degree has come in handy along her journey: "It’s a real challenge…a science degree is very useful because science is all about organization and logic and following through, and putting little pieces of a puzzle together… to see the system up and running…I get a huge kick out of it when it all works…to see my mother looking good and enjoying what she is doing is very rewarding…and that is what this journey has been all about."