BRIDGING THE GAP
By Mark Stolow, Project Manager, Care-ring Voice Network
I learned quickly how to cope out of necessity, out of urgency, because of an illness that was beyond my control. I taught myself how to keep her from sinking, from spending the whole day crying, or sleeping, or not eating. I learned what to say and how to say it. I made lunch, did the laundry, made sure she took the right medications. I cared for her because she was my mother and because she was depressed. My father never said it, but we knew. One of us had to be there to make sure that she wouldn’t take her own life. It’s a lot to bear at eleven, keeping your mother alive.
When 80% of care needs are being met by families in the home, you can be sure that most caregivers’ experience an accelerated learning curve. It may be out of necessity, or love, or lack of choice. Any way you cut it, caregivers’ quickly learn of their available resources, how to time manage, provide nursing, medical and emotional support, budgeting strategies, etc. Ask most caregivers and they’ll tell you, the care situation demands it, if you’re going to make it through in one piece. Not all caregivers are experts in every facet of care provision; that would be assumptive and contrary to what we know from research and practice. Rather, all caregivers’ inevitably find themselves at some phase of this learning curve, whether they’re taking the first few steps or seasoned experts.
The first time was the toughest; staring at her, dishevelled in her bathrobe. She didn’t say much, kind of stared blankly, the deep blue fatigue in her depressed eyes. There was no will in her. No will to move, to live, to function. I had to become that for her. I became the vehicle through which she could experience the world. We played board games all day because it made her happy. I learned in that moment how to make the sadness fade away, at least for a few hours.
What if there was a way to harness this knowledge, the knowledge embedded in our caregiving communities. What if caregivers, at all phases of the journey, could escape the isolation of their four walls and extend a practical and lending hand to others in similar situations. We wouldn’t be sacrificing a caregivers’ entitlement to professional or state assistance. We would simply not require their absolute dependence on formal help. We would be building capacity in our communities and empowering families to lend each other a reciprocal means of support. We would be expanding conventional notions of the ‘nuclear’ family to include all those individuals in our community who are connected to us, not solely through blood ties, but through a sharing of a uniquely challenging experience; An experience like caregiving for a family member or friend who has a chronic or debilitating health problem.
At 11, I didn’t have a lot of friends or people to talk to who could bend their minds around Manic Depression. I wish I had. I wish I had had a network of people who could support me through that process and share their wisdom with me. My brother’s and I used to have ‘meetings’. We would share tactics that would help to alleviate the pain and the sorrow that w as consuming my mother. We knew there were others just like us, employing a completely different repertoire of care strategies to help their families. We could have helped each other.
Care-ring Voice is about strengthening our caregiving communities through the creation of peer to peer caregiver networks. Through telephone based workshops, Care-ring Voice creates a virtual and accessible space in which caregivers can tap into the wisdom and experience of others in similar situations. Through the program, caregivers build lasting friendships. Some end up sharing care responsibilities, like surrogate families. There are caregivers who exchange vital and helpful information, and still others who simply feel validated and recognized being surrounded with like-minded people. All of this because they picked up the phone and got connected to a network of caregivers who could fathom their struggles and their triumphs and had walked a mile in their shoes. Feelings of solidarity and validation are powerful tools for change. We see it every day through the Care-ring Voice program.
I’m 28 now and still caring for my mother, and yes, she still has Manic Depression. I’d like to talk to that boy. Tell him that he’s not alone; tell him that he’s doing the best job he can under difficult circumstances.
If you find yourself in a care situation and you need information and support, know that there is a network of caregivers and professional consultants at your disposal through the Care-ring Voice Network. Discover more >