Publish date: 8 June 2021
As part of Carers Week, Angela from our library services has kindly given us a glimpse into life working and caring for her husband who has Parkinson’s Disease.
I'm based at Wansbeck Hospital in the Education Centre Library and have worked for the Trust for over 30 years.
The first inkling I had that I was a carer was 4 years ago, when my husband, Gordon, who’d had symptoms for the previous 6 years, was diagnosed with Parkinson’s Disease, and his consultant asked me if I would attend all his appointments with him, because his memory isn’t so good.
Gordon had taken very early retirement from his job as a statistician for the DWP just prior to his diagnosis. He was already struggling with new technologies. At that time, I was also helping my dad care for my mum who had severe mobility and cognitive issues due to Low Pressure Hydrocephalus, which also robbed her of her ability to communicate. I would sit with her some evenings and put her to bed, to allow my dad to get out for a couple of hours with his friends, and would help feed her as she was unable to feed herself. She sadly passed away a few weeks before my husband’s diagnosis.
Gordon has now been diagnosed with Lewy Body Dementia. His cognitive decline has been quite steep and the lockdown restrictions during the past year or so have hastened things along somewhat. He’s gone from being a statistician to being unable to work the TV remote, the shower, the heating . . . He forgets what day it is and needs clear and simple instructions to help him undertake various tasks.
I prepare him a packed lunch for when I’m at work, as otherwise he forgets to eat – putting a sandwich together often proves too complex a task for him. I sort out his medications into dosette boxes to help him take his meds when he is supposed to, but he still forgets to take them. His Parkinson’s meds must be taken at the same times each day for maximum benefit so I added reminders into his phone which he then deleted because he doesn’t like his phone beeping at him.
Gordon and I always shared household tasks however I am now having to take these on myself and I must be honest, standards have slipped a little as I prioritise my time to spend quality time with him rather than dusting the skirting boards!
Juggling caring responsibilities with working full-time was causing me stress so 4 years ago I reduced my working hours to 3 days a week and it has been the best thing I ever did! Time can still be tight, I swap working days and use flexi-time and annual leave to fit in medical appointments and also to fit in tradesmen to do jobs in our house. Flexibility from both myself and my line manager is key, without it I perhaps wouldn’t be working.
The Carer’s Staff Network is great! The best thing about it is knowing you are not alone in being a working carer and that is HUGE because often, you feel like there is no-one else out there who understands how it is. Despite having their own caring role(s) there is always someone to listen, and to offer advice, and the group meetings are a good place for a coffee and a natter with people who get ‘you’ and help you feel less alone. I am also there to listen to others and to offer support when I can. The collaboration between the Trust and Northumberland County Council Carers Staff Networks makes it special too – it allows more people to help each other and draw on shared experience and support which can only be a good thing.