Hurrah for Granny Pat!

By a cruel twist of fate, Mum also had Parkinson's...

Lightning really could strike twice

When Euan was diagnosed some years after Mum, it felt like a cruel blow: lightning really could strike twice in one family - but actually it proved to be a precious, special connection that brought them close. They became comrades in adversity, or, more accurately, partners in crime. They took comfort in comparing notes on Mr P, and they agreed wholeheartedly on the medicinal benefits of sherry and ice cream, contrary to some schools of scientific thought! Mum also taught me a huge amount about life with Parkinson's and left me a great legacy of knowledge and understanding.

Amazing role model

Mum was an amazing role model, rarely beaten by Mr P, and determined to give him a good run for his money. She dealt with her illness with wonderful grace and fortitude and fantastic good humour, showing us the way to live a good life despite being dealt a poor hand. I think the way her diagnosis came about had something to do with it. For a year or so beforehand, she was struggling to swim: after a lifetime of being a very capable water baby, she suddenly found she was literally sinking in the pool, unable to swim even a length.

Grace, fortitude, good humour

As other symptoms accrued, she began to suspect PD but her theory was dismissed by her doctor on more than one occasion, leaving Mum deeply puzzled and increasingly concerned as to what might be the cause. She came to the conclusion that it could only be a brain tumour - so when a locum doctor did the basic checks (did you know there is no actual test for PD?) and confirmed her own diagnosis, she was actually delighted - ’Thank goodness, only Parkinson’s, a brain tumour would have been a whole lot worse!’ Good old Mum.

’Thank goodness, only Parkinson’s, a brain tumour would have been a whole lot worse!’

Learning about caring

From the outset Mum was wonderfully generous about Mr P, sharing what she was learning and helping us to understand what was happening to her. She taught us how to care for her, what worked, what didn’t, the concept of struggle - so important for independence and dignity. She showed me how to share an illness, how to let people in and be part of it. I am not sure I will ever be able to be so open and generous, but maybe it‘s a Parkinson’s thing because Euan has that same generous, open approach. She let us in, and it felt like a great privilege.

Playfulness and quality relationship time are vital

She taught me that although meds and safety are terribly important, playfulness and quality relationship time are a vital part of care, too - because first and foremost we are human. Time to talk, time to laugh, time to do the little fun things that were still possible - going out for coffee and cake, sneaking an illicit sherry, only having a starter to make sure she had room for pudding, going to happy places - to watch the boats bobbing at the beach on the changing tide, or to visit the local alpacas for a chat. She taught me to fight for her right to be more than the illness. And she nurtured our mother-daughter relationship in the process so that it didn’t get lost along the way.

Mum taught me to fight for her right to be more than the illness

Mum also taught me that every day with PD takes as much effort as being a champion jockey - just getting out of a chair takes so many attempts that having a large piece of chocolate cake with coffee was actually a matter of survival, so many calories to be replaced. For each day of fun or activity there was a price to pay, the following day always one of exhaustion, stiffness, pain - but it never stopped her wanting to go out to play! She also explained how it seemed as if the world was moving too fast now for her to join in conversations, so I learned to make spaces for her to have her say - she still had plenty to say, and it was well worth hearing. She also explained that you can't hurry a Person With Parkinson's - Mr P goes at his own pace, and it's slow! Mum trained me well - these tolls and changes have happened for Euan, too, and I have been able to make the necessary adjustments of pace and space.

You can't hurry a Person With Parkinson's!

Gradually I learned how Mum preferred to be handled and helped and we found a rhythm together that lasted till the day she died. She liked her feet to be outside the blankets and the nurses kept tucking her back in, so I regularly undid their neat pleating of the sheets during those last days, so Mum could wriggle her toes freely. Euan now asks for his feet to be uncovered and it makes a nightly connection to Mum, and again I wonder, is it a Parkinson’s thing?

Fun-loving, generous spirit

Mum stayed interested in the lives of others till the end, always wanting the latest update on family, friends, care home staff, everyone who was part of her life - and she never forgot a detail. I think her outward-looking stance was the key to her success with her Parkinson’s, along with her huge array of practical skills that meant she was used to ‘just getting on with it.’

Outward-looking stance

And, of course, her fun-loving, generous spirit that eased the way through so many tricky situations and made caring for her a pleasure.

Mum lives on in our Westhaven world. We seek ‘Granny Pat’s’ verdict and advice on a daily basis, particularly if there is any dispute about extra helpings of ice cream, biscuits or chocolate. Thank you, Mum, for continuing to watch over us as we muddle along with Mr P. You got us off to a flying start.