Caregiving from a distance

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By Lisa Levin

Who do you think of when you picture a family caregiver?  An elderly spouse caring for an ill husband or wife?  An aging widow who now lives with and is cared for by her devoted daughter or son?  Parents looking after disabled children?  Many people feel they are not true caregivers unless they live with the person who needs assistance.   They will say – I “just” do some errands for mom, or “I “only” drive my dad to appointments and get his groceries.  This is so typical for family caregivers who often undervalue their contribution to society.  However one does not have to reside with someone to be their caregiver.  In fact, it can be more challenging to live apart and juggle your own household duties as well as those of another.  A more extreme version of this is long distance caregiving where caregivers live in a different city or town than the person they are helping.

As Canada’s population has increasingly moved into major urban centres, it has left smaller communities with a greying population and a gap in local family caregiving.  This has led to the growth of long distance caregivers.  Sometimes local siblings take on the bulk of hands on care, while out of town siblings struggle to contribute what they can.  However in many other cases, there is no local family member to care for aging parents – resulting in the long distance caregiver.

Penny has been living in Toronto since 1989 – after having relocated from Kingston to the “big city”.  She used to visit her mother, Vera, every few months.  Penny did not feel the distance was an issue as she could hop in her car and be with her mother a couple of hours. When Vera developed cancer in 2009, the two and half hour drive on the 401 began to feel like a cross country marathon. “Mom is single and my sister lives in B.C., so it was up to me to care for mom,” says Penny. She visited Vera every month, while juggling working and her family life in Toronto.  “For the two years of mom’s cancer treatment, I was running everything from Toronto,” says Penny.  Penny would regularly speak with Vera’s doctors, and call her mom every day to ensure she was taking her medication.  Vera was overwhelmed by the process and confused.  So it was up to Penny to keep things running smoothly.  Like most long distance caregivers, Penny was very resourceful.   She had neighbors and the building superintendent check in on her mother regularly to make sure she was ok.  Penny also linked her mom up with the VON SMILES program for free homemaking supports such as shopping and laundry.  Vera has recovered from cancer so things are somewhat easier for now.  However, she calls Penny multiple times a day and her memory is failing.  The caregiving journey is taking another turn for Penny.

New technology has been developed that is enhancing the effectiveness of long distance caregiving.  One example of this technology are the products offered by Carelink Advantage – an Ontario based company that provides services across the country.   Carelink Advantage will set up clients with a range of customized cameras as well as sensors in their homes – on beds, outside doors, refrigerator doors etc…  They also have a medication stand with sensors and cameras.  The family caregivers of the Carelink clients then customize alerts.  For example, some caregivers wish to be notified if their parent does not take their medication by mid- morning, or if the front door opens after midnight.

“Without Carelink Advantage, I would have had to quit the job I love,” says Cindy – a CBC journalist from New Brunswick.  Cindy’s parents who lived in PEI were both diagnosed with dementia in 2009.   Carelink Advantage (CLA) combined with limited provincial home care and kind neighbors kept Cindy’s parents living independently for two years.  “Dad wanted to die at home in PEI and he was able to have his final wishes fulfilled because of this great technology,” says Cindy.  Through CLA, Cindy could ensure her parents were taking their medication, and she was able to monitor for potential falls, and oversee their day to day wellbeing.  Cindy’s siblings who also lived outside PEI could provide “technological respite” and take over the system monitoring when Cindy, her husband Michael and their three children went on vacation.

As our society ages and families continue to reside in different areas, long distance caregiving will likely grow.  While not ideal, Penny, Vicky and Cindy show how long distance caregiving can work – with a little help from friends, neighbours, community agencies, and technology.

Where to get help:

VON SMILES Program – free homemaking for seniors available in Easter Ontario.  http://www.von.ca/en/hastings/service/seniors-managing-independent-life-easily-smile

Carelink Advantage.   1-(866) 876-7401   https://carelinkadvantage.ca

Community Care Access –  http://healthcareathome.ca/

Lisa Levin is Chair of the Ontario Caregiver Coalition and is Principal Consultant for Lisa Levin and Associates. She also provides Care Management services to help families navigate the home and community care system. She can be reached at info@lisalevinandassoc.com