My baby just cares for me

To support a person with Parkinson’s (PwP) the first person you need to care for is yourself.

As you can see, my ‘baby’, in this case my husband Robin, doesn’t just care for me. He cares for our cat, LouLou; for our garden, and our house. He cares for his fitness – he’s recently moved up an age group in orienteering and can’t wait to get back in the forest again.

Robin cares for the wildlife of Cumbria by clearing scrub, planting trees and building leaky dams. He cares for a healthy logpile and a roaring fire. The first person he is caring for is himself – as everyone needs to do. On aircraft we are advised:

“In the unlikely event of a sudden loss in cabin pressure, an oxygen mask will automatically drop from the ceiling. Put the mask over your face and breathe normally. Put the mask on yourself before helping others.”

During lockdown Robin has been my only sparring partner. He holds pads and looks terrified while I kick and punch Parkinson’s out of my life with a satisfying ‘thwack’. He does things for me that I find fiddly, mostly packaging-related and involving a lot of swearing on my part. 

But for as long as possible, I don’t want him to give up the stuff he enjoys to be my ‘primary caregiver’. I fear that is taking the ‘in sickness and in health’ commitment too far. One day he might need my help. We’ll be scuppered if it’s just the two of us and he can’t manage the corkscrew and I struggle with the screwtop. LouLou doesn’t have opposable thumbs.

Teambuilding

This is why I’m building a team of supporters with different talents. For example, when I can get back to Boxercise (can’t wait!) I will have other people to spar with. Supporting people with Parkinson’s (PwPs) is easier if the tasks are shared out. Everyone does a little bit, and feels valued and useful. Katie Nicol, now a full-time carer for her husband Euan, calls this the ‘tribe’. She says:

“It is so important that you feel you have people you can readily turn to – people who will meet you where you are, without judgement, and be willing to walk the road you are on, be by your side. People who can laugh with you and also cry with you. People who fill you up and help you out. People who ask searching questions and want to hear the answers. People who are not afraid to care, who face the fear and are willing to be burned by it. People you click and connect with. People who really ‘get it.’ People who don’t keep a score. These are your tribe.”

Katie’s blog You, Me & Mr P is a fabulous resource for carers and supporters. Fun, inspiring and a great read.

Get in touch

• Who’s in your support team, and what are their talents and skills?
• If you’re a supporter, what skills do you offer? Let me know.  

Play > My baby just cares for me > Nina Simone

Nina Simone’s caring ‘baby’ in this song is a man who prefers a simple life. This is what draws me to mine. The nearest we get to ‘high town places’ is checking out the tasting menus of Cumbria. The rest of the time he would rather stay at home with a fish pie, a hearty log fire, and Countryfile on the telly.