He explains how life is a little easier since professional carers started to visit their Driffield home.
Margaret was diagnosed with PSP in 2010. Before that, we’d noticed she found it difficult to judge distance. She would drop the pans on the floor before she’d reached the shelf to put them on, and she scraped the car a few times. Then she started falling backwards. At first, she was thought to be having mini-strokes.
We went to the falls clinic where they realised it was a neurology problem and sent us to Scarborough Hospital. The neurologist there diagnosed PSP.
After the diagnosis we had two or three years where we busily did everything we could together, including going on cruises. But that isn’t possible now as the progression is much quicker.
Continuing Healthcare funding kicked in about six weeks ago and this has made a big difference for us.
Since we have been in the system it’s been brilliant. It was the neurology nurse, Sandie Wade at St Catherine’s Hospice in Scarborough, who linked us in, pointed us in the right direction for assistance and helped us to fill in all the forms.
We now have an arrangement with Marie Curie where someone comes in overnight three times a week. Although sometimes there have been others with a greater need and it’s only been once a week.
It makes such a big difference as I have to get up quite often with Margaret in the night. As she’s not weight-bearing it’s quite a lengthy job, hoisting and turning her and taking her to the loo. It can take 20 minutes every time I get up, and that can be up to five times a night.
The Marie Curie nurses come in from 10 pm to 7 am. We have a chat, quite often they keep me talking in the evening when I’m keen to get off to bed!
Before the night service started I was shattered. As well as caring for Margaret I have the house and a large garden to look after, and the meals to cook.
Carers have also started to come in during the day, which means I can pop out, and a cleaner comes in for a couple of hours a week so that helps too.
Margaret and I go to the Pocklington Local Group with our daughter Libby, who lives in Driffield and our other daughter Helen Dibb is also a member of Leeds Local Group.
I sing with a local choir, The Middle 8 Singers, and the members are all very attentive. Margaret used to be a member until she couldn’t sing anymore and they have all been very caring. I still try to take her to concerts so she can relive it.
Since Margaret has had PSP I’ve learned that you have to be able to accept help from people and push for it if you don’t get it.
You also have to get used to people coming into your home to help, as it’s your own little place, but if you are pleasant everyone can get along well. Although I don’t know what the neighbours must think with so many ladies visiting our house!
