“we’re okay, but….” the experience of being a long-distance caregiver karin fendick parkland...
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“We’re okay, but….”
The Experience of Being a Long-Distance Caregiver
Karin Fendick
Parkland Region Coordinator
What is caregiving?
In most cases caregiving is defined as a set of tasks that may be categorized as: Personal Physical Organizational Emotional.
Fast, Janet E and Keating, Norah C. (2000).
What is long-distance caregiving?
“Long-distance caregiving has been defined as care provided by those “living one hour or more away.” Although those providing such care may be present only intermittently, they can play an important role by becoming involved in problem solving, decision making, and advocacy.”
Schumacher, Beck and Marren 2006
What do we know about Canadian caregivers?
"There are an estimated 4.5 million caregivers in Canada. Caregivers are individuals who provide care and assistance for their family members and friends who are in need of support because of physical, cognitive or mental health conditions. Caregivers play an integral role in supporting Canadians who require care, often in the home and community.” Canadian Caregiver Coalition
Who are caregivers caring for?
Parent Sibling Other relative Friend.
What is primary versus not-so-primary caregiving?
Primary care is:Providing or coordinating care as the primary or only caregiver.
Not-so-primary care is:Providing care as a helper, secondary to other caregivers.
One individual as primary caregiver for another with local support.
Wife caring for husband with dementia, one son in close proximity, one son an hour flight away with the ability to travel frequently, and a daughter as distance caregiver unable to travel often but maintains close contact via telephone.
One individual as primary caregiver for another without local support.
A daughter caring for her father. Two sisters and one brother live distant. No other family members or friends live in close proximity.
Primary caregiver is at a distance.
Nephew as primary caregiver for an aunt at a distance in a rural setting.
Caregiving in rural and urban settings
Assumptions: Rural family networks have strong beliefs
about caring for their own. Urban areas have plentiful resources.
What is known: In-migration and out-migration often change
scenarios.
The rules of the road
Think of caregiving as a journey. Take it one step at a time. Understand your situation and options. Use a team approach. Change strategies as conditions evolve.
Creating a care plan
What care is needed? Who is providing care? Who is best suited to each task? Who can be added to the care team? Who else can assist caregivers?
What care is needed?
Personal care Help with meals/household tasks Transportation Assistance with financial and legal matters Monitoring medications Guiding and prompting Social contact Emotional support.
Who is providing care?
Spouse Children Other kinship/friendship network members Neighbours.
Who is best suited to each task? Assess caregiver strengths and limitations
What is the caregiver particularly good at? Information gatheringCommunicating Supervising othersSpeaking with healthcare professionalsManaging paperwork and legal mattersOffering words of support and encouragement.
Who is best suited to each task? Assess caregiver strengths and limitations
What may limit caregiver involvement? Is the caregiver able to travel? Is the caregiver prepared for a change of roles?How will caregiving affect the rest of their life?Can the caregiver communicate clearly?
Other kinship/friendship network members Other distant family members and friends Neighbours Clergy Community Agencies Healthcare Team.
Who can be added to the care team?
Who else can assist caregivers?
Are there others who have on going contact with the person being cared for? Yard care worker Letter carrier House cleaning service Fitness trainer.
Person who helps the long-distance caregiver the most.
30%
20%13%
12%
9%
8%4% 4%
Sibling living nearby Caregiver's Spouse
Other Relative Care Recipient's Spouse
Other Person Sibling Living Distant
Friend of Relative Someone Paid to Help
Metropolitan Life Insurance Company (2004).
Tips for professionals communicating with long-distance caregivers
Agree upon a plan for communication. Identify a primary caregiver contact. Identify a primary professional contact. Provide contact information for service providers. Suggest preferred methods of communication.
Tips for helping a caregiver with mixed emotions
Professionals can encourage the caregiver to: Accept what is Recognize that feelings and memories can
intensify Develop healthy ways of managing your
emotions Remember that asking for help is a sign of
strength.
Effect of long-distance caregiving on workCame in Late/Leave Early
Missed Days of Work
Take Leave of Absence
Rearranged Work Schedule
Turned Down Work-RelatedTravel
Considered ChangingEmployers
Turned Down Work-relatedRelocation
Considered Leaving WorkEntirely
Went from Full-time to Part-time
Lost Benefits
Metropolitan Life Insurance Company (2004).
Tips for helping a long-distance caregiver find balance
Professionals can encourage the caregiver to: Create a plan for their own household Anticipate the effects of caregiving on work Plan time for self care.
“I am one, but still I am one. I cannot do everything, but still I can do something. I cannot refuse to do the something I can do.”
Helen Keller