One in five Canadians aged 45 and older are providing some form of care for seniors living with long-term health problems. A quarter of all family caregivers are seniors themselves; more than 200,000 are older than 75. (citation: Eldercare: What We Know Today. 2008, Statistics Canada).
With these facts in mind, I was honored to join a Family and Friends support group at a local residential care community. I had the opportunity to share my story of my father’s tragic diagnosis of multiple sclerosis at age 63 and the struggle for my family to make care decisions with and for dad. I shared how I live with the fear that his diagnosis will be my future as well.
I left the caregivers support group with a warm feeling of connectedness and an affirmation that friendships were being forged that evening. CS Lewis knew what he was talking about when he said, “Friendship is born at that moment when one person says to another: What?! You too? I thought I was the only one.”
There are a number of reasons why a caregiver can’t attend a support group, including the difficulty of getting to the meeting, the pressing need to provide 24/7 care to a loved one or the legitimate need to NOT want to hear what is around the next corner for their loved one who is already suffering.
For those who can attend a support group for caregivers, they will find that there are many treasures to be found in their group. Among them are:
Opportunities to express the intense emotions of caregiving
There are so many aspects to caregiving. There is the deep affection and commitment that a caregiver has for their loved one. Alongside that affection is the incredible frustration and anger about the disease. Without an appropriate outlet, this anger can be misdirected to the people closest to you, including the individual to whom you provide care.
Relief of Alone-ness
There is a tremendous sense of alone-ness in caregiving. It’s hard to find others in your regular social circles who are dealing with the same types of issues. There is also the challenging discipline of balancing what you will share with others and how you will maintain the dignity of the person you love. With whom are you safe to share the complete reality of the caregiving experience?
Practical Ideas on how to manage your caregiving
Support can come in the form of practical help – how to lift a person, how to turn a person in bed, how to connect with help from the health ministry. It can also be practical help on how to cope with a loved one no longer recognizing you or their accusations that you are no longer faithful to your marriage vows. Support group members will have a wide variety of ideas that will give you tools to provide ongoing loving care.
Remembering and Honoring
In a support group for caregivers, you can share the life story of your loved one. Chronic illness, pain or dementia can dramatically alter the personality of the one you care for. It’s a wonderful opportunity to remind yourself, through sharing stories about the person you knew before the disease took hold of their mind and personality.
A caregiver support group can accept you and your situation for exactly what it is. There is no pretending necessary. Everyone around the table has dealt with the same types of emotions, challenges and outcomes of the disease. There is acceptance in shared experiences.
There are many decisions that a caregiver will face, some of them are moral ones that are especially difficult in the midst of the hard work of caregiving. There are decisions about resuscitating your loved one, about having them enter a locked dementia ward, about personal hygiene, about involuntary separation. These are decisions that wear down the strength of the caregiver – and require spiritual support. Many caregiver support groups have members who have made these decisions ahead of you and understand the difficult process. They are often led by chaplains who will walk alongside you through prayer and discernment to help you make these decisions as they are required.
Families can be tough sometimes
It’s very difficult for families to move through grieving the chronic illness and deterioration of a loved one at the same pace as each other. There are times when a family is divided about having a loved one enter a residential care facility. And… dare we mention finances? Money can be a central divisive point that causes stress to all involved. There are times when a support group of strangers can be a friendlier environment than a family meeting.
Caregiving is an honorable and difficult calling. There are no awards shows for the Best Feeder or the Most Supportive Lifter and Bather. There are no trophies, no accolades and no bonus cheques. The rewards are spiritual and meaningful, but, in the meantime, it sure helps to have a group of people to cheer you on in the day-to-day work of caring for someone you love deeply. There’s no need to go it alone.
Sharon Simpson is the Director, Communications and Stakeholder Engagement at Menno Place, a senior’s campus-of-care located in Abbotsford, BC. She regularly writes for Menno Place, The Light Magazine, and the MB Herald.