Caring for someone living with dementia is challenging, especially when it’s done from a distance

Navigating the role of caregiver for someone living with dementia can be made all the more difficult when the barrier of distance is added. But, while facing the obstacles of varying time zones and health-care systems, paired with the emotional toll of separation, can be difficult, taking on the task is do-able, especially with the right supports in place.

Dementia Connections spoke with three Canadians with experience as long-distance caregivers to learn more about how they overcame the challenges associated with caring from afar and the advice they want to give to others in similar positions.

Ian and Julie Goldman

Living away from home was not a new situation for Ian Goldman when his mother started exhibiting early symptoms of dementia. Raised an only child in Leeds, England, Goldman first moved away from the United Kingdom in the late 1970s, settling into his current place of residence in Toronto in 1986.

His mother, Julie, was notably independent in the intermittent years, living in the family home in Leeds on her own for several years after her husband passed away in 2001.

Goldman says his mother started displaying signs of dementia in 2009. It began with frequent repetition during phone conversations, difficulties handling cash and often sleeping in a chair rather than her bed (later believed to have been a result of Julie imagining guests were visiting her home).

At the time, Goldman was returning to the U.K. every year or two and speaking with his mother frequently and openly by phone, though he says having trusted family and other community members nearby was crucial in staying informed. Their visits and calls also gave Julie a feeling of connection and caring.

“If you can get an ally, a pair of eyes and ears on the ground, it’s such a big help,” says Goldman. “Especially if you’re the sole care manager for your loved one, as I was.”

As his cousins began to report an increased number of panicked phone calls and other uncharacteristic actions from his mother, Goldman decided to take a proactive approach. During a visit for Julie’s 80th birthday, Goldman organized online bill payments, set up meetings with the family doctor, and initiatied an email arrangement with the doctor in order to stay informed while he was back in Toronto. He also introduced in-home personal care visits, which his mother initially resisted, but eventually came to accept.

Technology also played a major role in facilitating Julie’s care. Having previously received power of attorney from his mother, Goldman was able to streamline dealing with finances through online banking, and he corresponded with agencies and health-care professionals both through email and video-conferencing. In addition, Goldman, along with his wife, also accessed educational e-learning tools through the Alzheimer Society of Toronto and attended small group sessions in order to better understand the natural journey of the illness.

Among the lessons Goldman learned through the Alzheimer Society was the importance of considering the toll of stress on caregivers.

“By early 2017, Mom’s situation was deteriorating, and I was dealing more and more with agencies and medical institutions and trying to figure out what exactly was happening,” says Goldman. “Some of that was distressing to me, and extremely frustrating. [The]Alzheimer courses on caring for the caregiver were helpful, too.”

While Goldman’s personal journey would end with the passing of his mother in October 2017, he continues to give back through research, contributing his lived experience to the Canadian technology and aging network AGE-WELL and the Centre for Aging and Brain Health Innovation. He also volunteers for organizations such as the Alzheimer Society of Toronto, including its Minds in Motion program, offering presentations and facilitating sessions that relay his experiences, displaying first-hand that the journey of long-distance caregiving may come with obstacles, but is far from unmanageable.

Greg and Ruth Stephenson

Greg Stephenson says his mother, Ruth, hid the early stages of the gradual onset of her dementia well, which made the news of her getting lost on her way to church a shock.

Ruth had driven from her home in Mill Bay, B.C., to the north end of Vancouver Island and back again, unable to find her exit. Once back in Mill Bay, she got into a car accident, at which point her family was informed of what had happened. Luckily, Ruth suffered only minor injuries but, following the accident, she underwent testing and her doctor found that severe respiratory issues were limiting oxygen to her brain. While the respiratory issues were corrected, Ruth’s doctor also informed the family of an underlying Alzheimer’s disease diagnosis, which was expected to progress quickly.

At the time of the accident, Stephenson was living in Calgary, but had siblings living nearby who were able to ease the transition period following Ruth’s diagnosis. Earlier conversations Stephenson had had with his mother further helped when faced with the decision of securing either in-home care or moving her to an assisted- living facility.

“I had known from conversations with her before that, were she not able to live independently, she didn’t really want to live in her own home,” says Stephenson.

He and his siblings made the decision to move Ruth into Sunrise of Victoria, a private assisted-living facility with a dedicated floor for residents living with dementia. While his siblings would eventually move away from the island, Stephenson says the transition into becoming the primary caregiver was eased by decisions he and Ruth had made prior to the diagnosis, such as securing power of attorney to act on his mother’s behalf financially.

From there, Stephenson says the facility was fantastic when dealing with care, leaving no worries in terms of his mother’s comfort or happiness. Still, the distance was difficult emotionally.

“I was never worried about her being unhappy because I knew she was happy with her situation. But I wasn’t there as much as I wanted to be,” says Stephenson. “Had I been in the same city, I could have visited her daily. And I wasn’t able to do that. That was hard.”

Stephenson made time for visits, often on a monthly basis, coordinating trips to Victoria with doctor’s appointments whenever possible in order to be involved when medical news was delivered. When he was unable to visit, Stephenson says daily phone calls filled the gaps, with the contact — regardless of length or subject matter — meaning the world to both sides.

“When I would talk to her, she didn’t always know who I was, but she always knew that I was special,” says Stephenson. “The conversation — sometimes it’d be long, sometimes short, and it would often be quite disjointed, but she always enjoyed talking to me.

“That kind of daily contact and the chance to just talk to the woman who raised me was always a comfort.”

Martin and Bill MacDonald

Calgarian Martin MacDonald and his father, Bill, were separated by much of the country when early symptoms of Bill’s vascular dementia became noticeable. During semi-frequent trips to Bill’s home in London, Ont., MacDonald noticed his father was starting to eat less frequently and was experiencing deterioration in memory and motor skills, such as driving abilities.

The signs of early symptoms led MacDonald and his brother, who lives in the Bahamas, to convince their father to move into a private assisted-living home in London. While the move worked for a while, it became evident that the progression of Bill’s condition was leading to unforeseen difficulties in the long-distance caregiver relationship. MacDonald says that, although neighbours and family friends were able to give occasional updates, the stress of not knowing when he may receive news of Bill getting lost or facing other troubles began to take a toll.

“It was frustrating. You just never knew when you were going to get that phone call,” explains MacDonald. “Helplessness is probably the best word.”

Eventually, costs started to add up. Between trips to visit the London facility and extra care required due to the progression of the condition, Martin made the decision in early 2016 to move his father to Calgary. “We were going back and forth, and, after a year and a bit, we said, ‘We just can’t keep doing this,’” says MacDonald.

MacDonald admits the decision came without knowing what would be required in the move. Initial assumptions of securing an Alberta Health Care Insurance Plan (AHCIP) ahead of the move led to dead ends when MacDonald was informed his father would need to be present to register. MacDonald’s worries were remedied, however, when he reached out to Chartwell Fountains of Mission Retirement Residence to inquire about a room for his father, and they assured him they could help in the transition.

Through AHCIP, coverage from an Alberta plan commences three months after residency is established in the province when moving from within Canada. In the intermittent months, services accessed by the individual are covered by the Alberta government, who then bills the province of origin. This means that, in someone like Bill’s case, while waiting for Alberta coverage, services accessed would be billed back to Ontario through their health-care insurance plan there.

Despite hesitation, MacDonald was able to coordinate the three hours per day of care his father required through Alberta Health Services (AHS), allowing Bill to live comfortably in Calgary among his family until his passing in October 2016. While the move did come with its challenges, MacDonald says having his father nearby and able to create memories with his grandchildren was something he doesn’t take for granted.

“It was incredible to have him out here,” says MacDonald. “And I think it meant the world to my dad, too.” [ ]