Recently, I joined the blogging team at The Caregiver Network, a terrific site that's chock full of opinion, information and video links for caregivers of all types and ages. By way of introducing me to their site, their communications director asked me about my background. I thought readers here in The Caregivers' Living Room might be interested to know more about me, my family and my work too. So let's pour the tea and chat!
1.Tell us about your family caregiving responsibilities.
My husband Jim and I have two children, Nicholas (26) and Natalie (23). Nicholas has severe cerebral palsy and is medically complex which means he requires 24 hour one to one nursing care. Until four years ago, we provided that care at home. Now Nicholas lives in a nearby care home and we visit, telephone or skype almost every day. My mother is 93 and lives a couple of hours away in a seniors’ home. She is becoming frail, so my sister and I share her care.
My experience has been one that I would describe as ‘extreme caregiving’. Over his lifetime, Nicholas has endured multiple surgeries, frequent illness and chronic pain. In spite of his challenges, Nicholas maintains a positive attitude and a strong ambition to pursue his interests. During the years of caring for Nicholas at home, I became progressively more isolated. I believed that our life was profoundly different from others’ …. until one day a conversation prompted me to consider writing a book. A friend told me about the work of Amartya Sen, an economist who won the Nobel Prize for economics in 1998. Sen developed ‘The Capability Approach’, a way of understanding poverty in India that threw out household income as a yardstick for measuring human wellbeing and instead asked, “How can people living within circumstances of great hardship have a life they value?” With the lens of Sen’s Capability Approach, I sensed immediately that our family caregiving experience fell into the realm of ‘normal’ experience. Everyone would like to know how to craft a life that one values, given one’s unchangeable realities. Our family’s answers to that question might help policymakers and families better support caregivers of all sorts.
3. You talk about both disability care and elder care. Why? Do you think these types of caregiving are the same or different?
I write about eldercare and disability care because I have personal experience in both those areas. But I believe that we must find common ground across all caregiving experiences in order to form a movement for change.
4. Is it possible to be happy giving care when your loved one is struggling?
Yes, but I believe that happiness will be found in the moments between anxiety, sadness and sometimes even grief. Happiness might be found in the restful sigh of a loved one when a powerful pain medication finally takes effect. Or it could be in sharing a memory with your loved one that brings with it smiles and laughter.
5. What are the most important things you have learned in your life of caregiving?
Caregiving is a job that is full of thousands of small tasks. Each task in itself feels perfectly doable, especially because we (usually) love the person we are caring for. But over time, these tasks together can be exhausting.
You can’t do it alone. Make a decision to say ‘yes’ every time someone asks to help.
Remember, not all friends are good at being helpful. If you find that some friends or family don’t offer, just accept that part of their personality and try to move on asap.
Coordinate the team using facebook, email or one of the terrific new software platforms for caregiving such as Tyze.
Ensure that the whole team understands that caring for and about you, the caregiver, is a top priority. When a baby is born, everyone instinctively understands that the mother must be cared for so that she can look after her baby. The same principle is true when giving care. Someone else should look after walking your dog and collecting your children from school so that you can be with your relative in times of crisis.
Between crises, let the team share the care and visiting responsibilitiesso that the principal caregiver can have a break. These breaks will enable the caregiver to hang in for the long term without burning out.
6. What’s the one question you wish caregivers would ask but often don’t?
The question I wish caregivers would ask more often is ‘How can I approach my caregiving as a strong and sustainable team challenge?’
7. What’s the greatest caregiver myth?
If I don’t do everything myself, I am a failure.
This is perhaps the most damaging belief for caregivers and care receivers alike. If Steve Jobs had believed he could create a computer company with no employees, Apple would not exist today. Care, like all complex tasks, is best delivered as a team. This doesn’t mean that a different person needs to bathe your loved one every day or cook in your kitchen. It means that people need to support YOU, the caregiver, to thrive in your role. That support will look different for every caregiver, but the constant is that there is a team and the caregiver is the team leader.