This morning, there is a medical clinic appointment in my diary. It's not for Nicholas or my Mom - it's for me. It's a follow-up to a scope of my esophagus I had a while back - my family and good friends know that sometimes I have trouble swallowing food. Some dry piece of meat or bread will lodge itself in my 'throat' (actually closer to my breastbone) and no amount of drinking water or purposeful swallowing will get it to budge. So, the doctor simply 'stretched' my esophagus and did a biopsy while he was at it. This morning, I expect he'll ask me how it's going and inquire whether I would like the procedure done again for extra effect. What I do not expect him to say is that I have esophageal cancer, but I must admit that my GP did mention that my symptoms could indicate that diagnosis, if my symptoms had appeared suddenly (they didn't).
All of this got me thinking about when illness strikes a parent or caregiver. The joke amongst young mothers is that they 'never get sick'... even when they have a hacking cough and a high fever. For anyone giving care, booking off for a day or two is not an option. Of course, there are times when even the most intrepid and determined caregiver will be bedridden or incapacitated to such an extent that the troops must be called in. I recall once when my children were small, I somehow contracted viral meningitis. Natalie was a toddler and Nick was four or five. Before Natalie was in school full days, I used to say 'my kids are a two person job!" So at that time, we had a mother's helper living with us and we were both rushed off our feet with Nick's nursing needs and Natalie's penchant for mischief. When I had meningitis and realised that no amount of willpower would enable me to get out of bed and into action, I felt desperate. I pulled on the arm of my young home helper and wailed, 'what are we going to do? It's impossible for you alone to look after the kids!" Jim was working very long hours or travelling, and he would have been out of his depth with Nick's complex care anyway.
I had no emergency plan and I was living abroad, so no family nearby. But our mother's helper had a family and it was her mother who came to stay. Mrs. Rolley was this blessed angel's name and she came to cook, do laundry, play with Natalie and spread a sense of calm and control throughout our home. I was lucky that within a week, I was out of bed and back to an approximation of my usual routine.
Other mothers and caregivers are not so lucky. A cancer diagnosis and the ensuing invasive treatments can be a doubly scary prospect for someone who is caring for young children or vulnerable adults. Social services are not designed to do 'emergency response' for childcare or respite. But there is one charity that I read about recently that has taken up this cause. It's Toronto based and called "The Nanny Angel Network". The story of how one Nanny agency CEO took it upon herself to help women with cancer look after their families is HERE.
CREATING THE EMERGENCY PLAN
A caregiver 'angel' is not likely to swoop in, ready to help every caregiver, though. That means it's essential to have an emergency plan in place for when the caregiver is too ill to carry out essential caring responsibilities. For those tag-teaming with their spouse or another competent adult, an emergency plan could be as simple as promising to step in for the other in case of illness or emergency.
For single caregivers, the best place to start in thinking about creating an emergency plan is by making a list of anyone who has been helpful (or offered to be helpful) in the past. It's a good idea to have a 'Plan A' and a 'Plan B'. Write a draft email to a couple of prospective surrogate caregivers who have the skills set (or could learn quickly) to step in to care for a loved one. Explain that you are creating an emergency care plan for your home and you are asking for a commitment of help to replace you, the caregiver, if you become temporarily incapacitated. Leave no stone unturned to explore other sources of emergency assistance as well. If you have a social worker, ask what they suggest. Local community centers and churches sometimes have committees that can handle such family crises in their neighorhood. In the case of emergency care for school age children, schools are a natural partner in crisis scenario planning, whereas staff at a day program for Alzheimer's might step in for a vulnerable loved one with that condition.
An emergency respite plan is a good thing to have. And beginning that conversation with friends, family and neighbors could lead to greater awareness of your role as a caregiver and your need for regular respite. The emergency planning might be an opportunity to create a network of care for your loved one. Either way, like making a will or planning a fire escape route from your home, emergency planning in the event of caregiver illness is a great insurance policy against true catastrophe.