The Caregiving journey
By
Susan M.Ellis

When assuming the role of caregiver for a loved one with a chronic progressive disease we know we are in for a long journey. It would be helpful if we had all the answers and information we needed, right from the start - but it doesn't work that way. So what, in hindsight, did I learn about staying whole? I learned that I needed to constantly nourish my body-mind-spirit, my total self.

The body only works properly when it receives healthy nutrients, purposeful exercise, rest and relaxation. This has to be part of the contract. Time outor good food, sports or walks, sleep, spa days, massage and yoga are not luxuries. They are a defense against breakdown or "on the job injuries." They are no different that wearing a hardhat or steel toed shoes on a construction site. Those around us will not understand the comparison. That is why our assertiveness on this issue is imperative. But we have been indoctrinated with the belief that our needs are worth less than the person for whom we care – after all, we are healthy. The bottom line is that to succeed at this task we must take care of our body.

The mind must be clear on its goal and the value of its task. We must understand that the impossible cannot be expected of us. Positive attitudes towards disability and care giving must be adopted. We have choices. We must distance ourselves from beliefs - our own and those of others - that belittle our worth, see disability as a punishment and our efforts as a waste of time and life. We must surround ourselves with the energy of those who validate the journey. We must reaffirm at the end of each day we truly have done the best we could have done.

The Spirit lives and grows when we accept change as a normal part of life. We learn from the past, we do not dwell there. We honour the present and we do not waste one moment of it. We must not live in isolation; we must share the journey, this honourable, worthwhile journey with others. We prepare for the future without fear or resignation, but secure in the knowledge that we are not alone. The spirit is nourished when we respond with our instinct or gut reactions not the chatter of a critical mind. The spirit is awakened when we find joy even in the small things we do as care givers. The spirit is liberated when we cease to play the victim role and become the grandest version of whom we are supposed to be.

My care giving sojourn has ended. I am blessed with the knowledge that I am a better human being because of it and I can now share those gifts with the universe. Being a care giver is not a waste of time. It can be a time well spent for growing into our wholeness. But you are right – no one said it would be easy!