My 83 year old mum, struggling as Parkinson’s disease gradually erodes her independence, is a remarkable lady! Born in Kent, she went to Grammar school, then worked as a secretary. She married her childhood sweetheart in 1949 and had me in 1954. Mum always worked, finally teaching secretarial skills. Dad left the Navy and became a teacher at the same college. They studied bricklaying at night school so they could build their own bungalow. Shaped like a cross, it was only one inch out of true corner to corner! This shows real skill and my mum built every single one of the 16 corners! In her 50’s and 60’s Mum was builder’s mate! Over the years they remodelled an old country house into a hotel, then a nursing home. They retired at 60 and moved nearer to us. Sadly Dad died in 1999 and Mum moved even closer, doing most of the building work herself. She renovated two bungalows in Kent – one sold and one rented out.
Diagnosed with Parkinson’s
4 years ago she started to find that some things were getting difficult. I remember her calling me and asking me to show her how I turned over in bed. We never imagined that this was the result of an illness. Eventually diagnosed with Parkinson’s of some sort – it’s not all the same – she remained independent; driving, shopping and walking.
Over the past 18 months she has steadily deteriorated. The muscles of Parkinson’s sufferers get stiff and, although she doesn’t have the tremor associated with Parkinson’s, it causes her trouble with walking. She has gone from being a very independent woman to relying on gadgets and me to keep her living in her own home. She has every aid you can imagine to help her to get around and stay safe. She can’t cook now and relies on ready meals. She still has DIY projects on the go, only now she is in charge giving instructions to my sons and me!
Her knee replacement operation in January left her in great pain and needing a lot of support. That’s when I realised that at the age of 58, and now working from home, I had taken on the role of carer.
It’s very frustrating– there are tasks that I do regularly, such as the housework (her house is cleaner than mine!) and the shopping. Nothing is ever wiped down or put away. Things that are dropped remain there until I pick them up. She needs something to focus on and keep her busy so there is always a project underway, which extends the time needed to help her. Currently it is the fundraising plant sale we are organising to support the exercise classes for our local Parkinson’s members. It’s turned into a major event!
Parkinson’s and a solitary existence
Apart from me and my family Mum sees no one except at Parkinson’s meetings or exercise classes, and leads a solitary existence. If she wants to go anywhere I have to take her and her wheelchair. I thank heaven she is very light! I would love her to have a social life as she can be very animated in company but never invites anyone round. She thinks that her friends won’t come because ‘they have their family…’.and I haven’t yet persuaded her that they will!
I miss the fun times we had when we played piano duets together. We made all kinds of mistakes but had such a laugh! She can no longer play as her fingers can’t do the fine movements. She doesn’t laugh much either.
It’s very hard not to get cross and be short with her. It sometimes feels like being a teenager again when you have your own idea of how things should be done but your mother knows better! Being able bodied you can’t really understand how it feels for someone whose body won’t obey their mind. It‘s a wonder she doesn’t get more frustrated and tearful than she does and I am so grateful that her brain is still firing on all cylinders. At least we can communicate!
Gillian works from home helping people to earn additional income. She is vice chair of the Slough and District Branch of Parkinson’s UK and an Ambassador for the Business Biscotti Networking community. She loves to cook healthy and delicious food (with occasional cup cakes!), dances Ceroc and Salsa, gardens and runs an allotment.