This article series is about caregivers who are struggling with looking after loved ones alone or with little help, those brave souls on Haida Gwaii who have reached out and shared their own struggles. It is a compilation of the common factors found in the role of a caregiver.

It’s a crisis in the family. An unimaginable diagnosis. It’s the realization that over time something is changing in a loved one’s cognition, balance, capability. It’s a condition that develops slowly, that demands immediacy. You are always the one everyone else counts on to help. No one else is available to take on the task. There simply is not a choice.

Many of us can handle anything for a brief period but over time caregivers can find that their days and nights have become exhausting and overwhelming. Of course, there are the exceptions - people able to assist their loved ones who do not become fatigued or succumb to burnout. For many of us, however, intense caregiving can be the loneliest job we will ever take on.

Out of My Depth?

While researching this article I was able to sit down with Connie Young and ask her some general questions about caregivers on Haida Gwaii. One of the many advantages of living on Haida Gwaii is access to a Home Care Nurse/ Long Term Care Case Manager/Home Support Supervisor. In the north end it is Elisa Schacz and from Tll.aal Tlell south it is Connie Young.

In my conversations with Connie, no names were ever mentioned. She told me in her straightforward manner that she had watched me go down an all-too-familiar road for caregivers. I had slowly become irritable, tearful, had dark circles under my eyes from lack of sleep. I had aged. I sobbed when I couldn’t pick him up after a fall. I was worn down and still insisted I could do it all! Classic caregiver behavior.

Connie told me I was already grieving. Grieving the loss of a companion. Grieving the loss of the plans we had for our retirement years, the loss of my travelling companion. I was worrying about how I will cope when he passes. I was watching him slowly fade, slowly shrink, slowly become a shadow of his former self. Nothing in life has ever prepared me for what I was witnessing. As one experienced friend shared, this situation is the slow, slow breaking of a loving heart.

Who Cares?

There are over 7.8 million caregivers in Canada. That is 25% of adults and the number is growing as the population ages. Caregivers are mostly spouses, some of whom have their own issues with aging.

Most often it’s a family member who steps up to give care to a loved one. Although no two caregivers face the same situation, what they need is remarkedly similar: information on services available and how to contact them, guidance on finances and support in dealing with the different feelings that arise when handling relationships altered by the giving and receiving of care. It is also crucial for the person providing care to practice self-care--to be aware of the signs of burnout and to seek help.

Caregivers may find themselves operating on autopilot, compensating for their patient’s limitations, taking on an ever-growing list of responsibilities, tracking medications and making appointments. A good night’s sleep becomes a rare luxury. As caregivers try to address the ever-increasing needs, they begin to disappear from community life. Their own needs go on the back burner. As one caregiver shared, “I’m becoming ever more overworked, overstressed and overburdened and it is slowly dawning on me that I’m losing myself.”

Give Me a Break

Connie Young suggested I look into Mindfulness, the art of staying in the present moment and not looking down the winding road to an uncertain future. I maintain con-nection with a group of close women friends (we laugh a lot) and read library books on caregiving and self-care. Self-care because Connie left me with a very deep question that takes time to digest. She asked, “Why do so many care givers think they don’t deserve happiness?” It’s a question I often struggle with.

One of the services that Connie and Elisa offer is Respite care for your loved one in the hospital to give the caregiver time to sleep, rest and think. Home support is also available with the cost dependent on your income. However, many care recipients do not want anyone else to look after them; they only want their caregivers in their home. Both Island hospitals offer long term care for those currently at home who need more support than their caregivers can offer. To get on the list you will need to call Connie or Elisa who will interview your loved one and ask questions based on the Resident Assessment Instrument (RAI).

Resources for Caregivers

• Remind yourself that you are a team member. Create a support circle with doctors, nurses, social workers, other family members, friends, and neighbours.
• Home Support is available for one hour a week. Hospital Respite care is $40.68 a day.
• The government helps financially for those who qualify. Employment Insurance pays up to 35 weeks for those who are needed to supply care for the critically ill or an injured child. Line 58400 on the tax form allows a claim for maintaining their residence with family members who are over 65.
• Private care givers average $20/hr.
• Plan ahead. Get on the Assisted Living or Long-Term Care list. When a space is available, you have the option of turning it down and waiting for another spot to open. For an assessment regarding Long Term Care: Tll.aal Tlell south, call Connie Young, 250-559- 4991. North of Tll.aal Tlell, call Elisa Schacz, at 250-626-4729.
• Life Line for seniors is $50 a month from TELUS.
• For mental health support, call your doctor for a referral.
• The provincial not-for-profit charity Family Caregivers of BC provides direct support through one-on-one emotional support, health care system navigation and free educational resources. Check out the webpage at familycaregiversofbc.ca or call the BC Caregivers support line 1-877-520-3267.

Illustration by Manzanita Snow