1. “We’re okay, but….” The Experience of Being a Long-Distance Caregiver Karin Fendick Parkland Region Coordinator

2. What is caregiving? n In most cases caregiving is defined as a set of tasks that may be categorized as: u Personal u Physical u Organizational u Emotional. Fast, Janet E and Keating, Norah C. (2000).

3. 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

4. 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

5. Who are caregivers caring for? n Parent n Sibling n Other relative n Friend.

6. 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.

7. 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.

8. 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.

9. Primary caregiver is at a distance. Nephew as primary caregiver for an aunt at a distance in a rural setting.

10. 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.

11. 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.

12. Creating a care plan u What care is needed? u Who is providing care? u Who is best suited to each task? u Who can be added to the care team? u Who else can assist caregivers?

13. What care is needed? u Personal care u Help with meals/household tasks u Transportation u Assistance with financial and legal matters u Monitoring medications u Guiding and prompting u Social contact u Emotional support.

14. Who is providing care? u Spouse u Children u Other kinship/friendship network members u Neighbours.

15. Who is best suited to each task? n Assess caregiver strengths and limitations u What is the caregiver particularly good at? F Information gathering F Communicating F Supervising others F Speaking with healthcare professionals F Managing paperwork and legal matters F Offering words of support and encouragement.

16. Who is best suited to each task? n Assess caregiver strengths and limitations u What may limit caregiver involvement? F Is the caregiver able to travel? F Is the caregiver prepared for a change of roles? F How will caregiving affect the rest of their life? F Can the caregiver communicate clearly?

17. u Other kinship/friendship network members u Other distant family members and friends u Neighbours u Clergy u Community Agencies u Healthcare Team. Who can be added to the care team?

18. Who else can assist caregivers? n Are there others who have on going contact with the person being cared for? u Yard care worker u Letter carrier u House cleaning service u Fitness trainer.

19. Person who helps the long-distance caregiver the most. Metropolitan Life Insurance Company (2004).

20. Tips for professionals communicating with long-distance caregivers n Agree upon a plan for communication. n Identify a primary caregiver contact. n Identify a primary professional contact. n Provide contact information for service providers. n Suggest preferred methods of communication.

21. 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.

22. Effect of long-distance caregiving on work Metropolitan Life Insurance Company (2004).

23. 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.

24. “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