Mike Phillips – Parkinson’s from a partner’s perspective
I consider myself very fortunate to have had the experience of spending time with my father, almost ten years ago now, as he nursed his convalescing wife, my mother, following her chemo and radiotherapy after being diagnosed with cancer of the womb. My father had his own brush with prostate cancer, ten years prior and successfully went through surgery. They are now both fully recovered and enjoying their new lease of life, full of activity and family outings in their retirement. I spent the final days of my mother’s treatment with my father and watched them slipping back into their bickering, accommodating 55-year plus marriage, once she’d been discharged from hospital. I knew it was time to go, after reminding my mother, as she advised us how to separate the laundry before loading the washing machine, that my dad had coped very well on his own whilst she was in hospital.
On the 3-hour drive home I reflected on what really makes a marriage and in particular, whether I would be capable and strong enough, patient enough and willing, to cope if something happened to my wife Jane and I had to become her carer.
I pulled into a layby and contemplated whether I’d be up to the task. I’m pleased to say that after only a few minutes I knew that I was up to the job and could find the emotional strength to not only look after my wife if necessary, but also to adjust our lifestyle if required and to prioritise health and happiness.
My wife Jane’s Parkinson’s diagnosis came approximately two weeks later.
It was the usual story. No advanced warning of the possibility of a life altering diagnosis, no clues from the GP or within the healthcare system. Whilst in the waiting room at our local NHS trust hospital, I read the posters and leaflets around the waiting room. Information about MS, Parkinson’s and other neurological diseases gave enough information for me to arrive at the diagnosis myself. I knew after 18 months of accompanying Jane to various tests and seeing her symptoms, that she had Parkinson’s. I headed for the consultant’s office, just as Jane was excused, clutching leaflets and booklets with all the information you are given and they expect you will need for the changing, degenerating, rest of your life. Jane was in her mid-forties, our son was 12 years old and we both still had both our parents, enjoying active and rude health in their advancing years.
I guess most of you have had a similar experience. I suspect that, unlike me, few partners had the opportunity to review their suitability to being thrust into the world of carer and to embrace that new title. The changing pace, intermittent symptoms of Parkinson’s and the fact that no two sufferers seem to have the same rate of progress, symptoms, or cocktail of mediation, makes it even trickier to negotiate that new role. Perhaps the terrible, incredible year we find ourselves in, also has its upside. As a nation, we have valued the ‘keyworkers’ from those who deliver the groceries, pubs and pub teams, postal workers, couriers and of course anyone who works at any level in the NHS. Lockdown gave us a chance to reset the values valve, and many of us took advantage of this quiet time to exercise, to take up crafts and hobbies, to enjoy the moment and to reconnect with family, albeit digitally.
There didn’t seem to be much in the news about long term sufferers of chronic illness. After the initial panic about drugs shortages and postponed hospital procedures, the attention shifted, and rightly so, to the breaking news about possible Covid vaccine development of successful drug trials. Don’t get me started about the necessary and unbelievably fast development of sufficient vaccines to get the world back to normal, compared to forty plus years of campaigning to find a cure, failed drugs development trials and surgical advances for Parkinson’s sufferers, which never quite got there.
I’m not looking for recognition as a carer but I am reaching out to all of those in relationships with sons, daughters, mothers, fathers, brothers or sisters or arguably and most poignantly, a life partner; husband or wife who are living with Parkinson’s and if, like me you feel that ‘there are three of us in the marriage’, I feel your pain.
Is it just me or is there an innate feeling of guilt? Not so much, why us, why her/him or a self-centred, I wish it wasn’t me, but if during the past year you have felt low, is it not natural to chastise yourself with a ‘what do I have to complain about’ by comparison? Is it wrong to feel annoyed, impatient or frustrated by the constant yo-yoing of symptoms, off periods and side-effects? Who can blame anyone this year for taking some time off from the relentless fight? Even the great and inspirational Michael J. Fox seems to have a new realisation that the battle does in fact sap the energy and the always looking up attitude has been replaced by a more pragmatic acceptance that the journey is not nearing the end but is continuing at pace and PD is claiming an increasing number of victims.
I salute all of you who are not PwP but who are in the fray, in the ring with your family member and quietly taking in the daily struggles, putting someone else’s mood and someone’s else’s feelings ahead of your own. Waiting in the corner with swabs and water, holding the towel, being there for physical and mental support and prepared to whisper the motivational and encouraging words to get through the next round. We are an army of often silent and long-suffering cornermen. Carers who not only care but who support, who carry the burden and who forever will be stronger and humbler as we accept the hand we have been dealt.
More power to you in your support role, in your personal fight and as you read this, be assured that we are one. We know what you are going through. You will emerge stronger. You know it, your beloved Parkinson’s suffering family member knows it too and you are one of us.
Dedicated to my wife Jane, my son Ben and our friend and fellow silent sufferer, Howard.
