"We're okay, but……….."

The Experience of Being a Long Distance Caregiver

  • 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 caregivers span the age range from youth to old age." Canadian Caregiver Coalition

  • Who is the Person Caring For?

A distance caregiver may be caring for a parent, a sibling, another relative such as a grandparent, an aunt or uncle or a friend.

  • Primary and Not-So-Primary Caregiving

For every primary caregiver there are at least double the numbers of long distance caregivers who are not providing primary care. The distance caregiver may experience helplessness at not being able to contribute directly to care of their family member or friend. There may also be a strong sense of being left out of the decision making process.

  • Distance and Isolation

When caring for someone that lives far away, one is dealing not only with distance, but may also be dealing with isolation. Services in rural communities may not be as easy to find. However, the closeness that may exist among people in rural communities can be a great advantage. Isolation can also occur in urban settings due to changes in a person’s community and support network.

  • Creating a Care Plan

Before a distance caregiver gets too involved exploring what help is available, they should begin with an assessment of their family member’s situation. As they get more details, whether by visiting or communicating over the phone, an initial plan will begin to take shape. This is the time to discover who is now involved in care and who also could become involved later. The “care team” will begin to emerge.

  • Who is on the Care Team?
  • Who is in regular contact with the person being cared for?
  • Nearby siblings, other family members, close friends
  • Other family members and friends who are also distant
  • Neighbours
  • Clergy
  • Community Agencies
  • Healthcare Team
  • Teamwork Works

When a caregiver is joining with others to form a team, it helps for everyone to agree in advance how their skills can complement the skills of others. Ideally, each one will be able to take on tasks best suited to their skills and interests. A caregiver needs to be realistic about how much they can do and what they are willing to do.

  • Identifying Local Resources

A distance caregiver may be unfamiliar with the area surrounding their family member or friend. Even in the caregiver’s home town, things can change quite profoundly in the years they have been away. They will need to investigate resources, whether in person, by phone, or online. A bit of extra time, patience and persistence may be required to navigate this process.

  • Communication is Key

Increased communication can help prevent family tensions that may arise when distance caregivers feel left out of the circle of care. It is wise to agree upon a communication plan. For example, one sibling might be designated as the primary contact person. Likewise, if possible, a case coordinator or other care professional can serve as the caregiver’s main contact.

  • Balancing Needs

As a caregiver begins to plan, implement and monitor care from a distance, they need to be reminded to create a plan for their own life. They will need to balance the needs of their family members at home, work needs and time for themselves. They should be encouraged to ask for help when necessary.

  • An Assessment of Caregiver Strengths and Limitations

What is the caregiver particularly good at?

  • Best on the telephone, fact finding, providing information to the rest of the care team, offering words of support
  • Supervising others
  • Comfortable speaking with healthcare professionals
  • Paperwork - paying bills, keeping track of statements, reviewing insurance forms and policies

Consider their limits.

  • How often can they afford to travel? Financially? Time wise? Emotionally?
  • Are they emotionally prepared for a change of family roles?
  • Consider how new caregiving responsibilities will affect the rest of their family and work life.
  • Can they be both patient and assertive when communicating from a distance?
  • Everyone Has a Different Story

Remember that though there may be many similarities, each person has their own unique journey through long distance caregiving. Plans that work well for one may not provide help to another.

References

Canadian Caregiver Coalition (2002). Policy Paper Series Number 1

Calling for a national caregiving policy: A prerequisite for providing home and community care

Canadian Caregiver Coalition (2004). Policy Paper Series Number 3

Working Paper for a Canadian Caregiving Strategy - Draft

Canadian Caregiver Coalition (2007) Strategic Plan

Fast, Janet E and Keating, Norah C. (2000). Family Caregiving and Consequences for Carers: Toward a Policy Research Agenda Department of Human Ecology University of Alberta Discussion Paper, Canadian Policy Research Networks

Hillman, Lorna (1999). Defining Family Caregivers. Family Caregivers Network Society Network News Vol. 12/No. 5 January

Jacobs, Barry J. PsyD (2006). The Emotional Survival Guide for Caregivers Looking After Yourself and Your Family While Helping an Aging Parent The Guilford Press

Levison, Nicole Strength for Caring,Long-Distance Caregiving,

Caregiver.com, Today's Caregiver Magazine

Magwood, Faith (2001). Who is a Caregiver? Family Caregivers Network Society Network News Vol. 15/No. 4 November

Metropolitan Life Insurance Company in Cooperation with the National Alliance for Caregiving (2005). Long Distance Caregiving, Since You Care Series

Metropolitan Life Insurance Company (2004). Miles Away - The MetLife Study of Long-Distance Caregiving Findings from a National Study by the National Alliance for Caregiving with Zogby International

Murphy, Catherine R.N., Long Distance Caregiver - Coping With Emotions. Caregiver.com, Today's Caregiver Magazine

Murphy, Catherine R.N., The Not-So-Primary Long Distance Caregiver. Caregiver.com, Today's Caregiver Magazine

National Institute on Aging, U.S. Department of Health and Human Services (January 2006). So Far Away - Twenty Questions for Long-Distance Caregivers

Rosenblatt, Bob and Van Steenberg, Carol (2003). Handbook for Long-Distance Caregivers Family Caregiver Alliance, National Center on Caregiving

Shuman, Kate Strength for Caring, Helping From Far Away Caregiver.com, Today's Caregiver Magazine

Zimmerman, Dianne (2005) Strength for Caring, Caregiving From Afar. Caring Today Magazine Summer 2005