My mother's biggest fear was becoming a burden to the family in her old age. When I was diagnosed with Parkinson's almost six years ago, I began to understand her almost obsessive fear, as I too, now worry about the future and becoming a burden to my darling husband. I would like to acknowledge and dedicate this article to anyone who is a caregiver.
Let's be brutally honest; becoming a caregiver is without doubt a job nobody in their right mind asks for, wants or expects. Yet suddenly a person can find themselves in the position of having to take care of an ageing parent or spouse. Not giving a second thought, it seems only natural and the right thing to do, caring for someone you love. However it is a thankless job that can't be added to one's curriculum vitae, nor does one receive any job satisfaction or financial reward. The hours are long; constant tiresome challenges, no vacation, it is a 24/7 job. There is no course or studying to prepare the caregiver for what lies ahead, and no diploma awaits, despite the wealth of knowledge and life experience gained along the way, that would suffice for a university degree. It's the kind of appointment that one would never dream of taking on, and yet many around the world, tirelessly day in and day out perform their newly given task of caring for a person they love.
Too often family and friends are unaware and barely know what a caregiver goes through. The mental anguish alongside the daily logistics and physical work involved with taking care of someone who is chronically ill, requires great strength of character, devotion, much patience, a sense of humour and a lot of love to fulfil this unwelcome task. We are often called the 'sandwich' generation, for whilst still bringing up our own children we find ourselves additionally taking care of ageing parents or a spouse.
Much focus is understandably on the patient, and a caregiver is often left on the side lines, when in fact they are an integral part of the picture. I am fortunate to be under the wonderful care of a top neurologist, who always takes the time to ask my husband how he is bearing up. This concern and empathy is one of the many things that makes him such a remarkable doctor. Some caregivers, given half the chance, would love the opportunity to unload and talk about what they are going through. Others, might prefer to talk about anything except the issue, for they live it every day and need a break from its suffocating effects. Each person is individual and deals with pressures and concerns in their own way.
A caregiver needs dreams and goals of their own, to help alleviate the enveloping daily drudgery, which can quash his/her spirit; hence these daydreams and aims are an important focus, providing essential respite from constant demands. Even if the dreams don't evolve into reality, the mere fact they occupy the caregiver's mind allows necessary escapism. This is a healthy and intrinsic coping tool for anyone whose life has suddenly taken a turn, when future plans that a couple had once made are no longer possible. In a situation that can feel overwhelming, a caregiver's sanity can be preserved by embracing these dreams, having something to hold onto when everything else seems to be falling apart. It's a good idea for a caregiver to have a hobby or activity that is theirs alone, enabling 'time out' from taking care of a loved one.
As a married couple, the welfare of one's marriage is important, so doing something recreational together that is not related to illness can be highly beneficial. For as many hours as my husband and I spend together at hospital visits; doctors' appointments, going places where I've been invited to speak - this is not recreational nor a break for my husband, who is my caregiver.
Parkinson's, like many neurological diseases, continually persists, never gives up, and there is no break or parole for good behaviour. Unless standing in caregivers' shoes, it is impossible to grasp completely the daily complexities encountered, both physically and emotionally taking care of someone suffering chronic disease. If you are a caregiver - you are not alone, for there are millions of people around the world in your position, and I applaud you all. Parkinson's is changeable like the weather, and one never knows in advance if it's going to be a good day or a bad one. Making plans in advance, is always tricky, but the best advice I can give; is to simply take one day at a time.