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This is caring: Roland

This week is Parkinson's Awareness Week (18 - 24 April 2016). We spoke to 72-year-old Roland from Sussex to find out about his experiences of caring for his wife Jan, who has Parkinson’s and dementia.

Roland and Jan for webJan and I met 50 years ago, when we worked for the same engineering company. I worked on the shop floor and she used to hand out the pay slips. One day I plucked up the courage to ask her for a drink – and we were married a year later!

15 years ago Jan was diagnosed with Parkinson’s. At first life carried on pretty much as usual. The right hand side of her body was affected and was very weak, but generally she was independent.

I started to notice some changes in her mood and behaviour about six years ago. She went from being in charge of the house to being very passive and disorientated. It wasn’t like her at all. A year later she was diagnosed with early-onset dementia.

Life changed very quickly. She is now very reliant on me. I help her get dressed, help with her personal care and medication and do all the house-keeping – the cooking, cleaning and running the house.

I found it difficult to adjust and I did get down. At times it can feel like caring for a child – sometimes Jan won’t want to get dressed, or will refuse to leave the house. It can be intensely frustrating.

The hardest thing for me was being involved in my wife’s personal care and hygiene. I found it embarrassing – and I know she did too. With time we got into a routine and now it’s just part of our day.

"Distraction is key – count the seconds on the clock for a while, or look out the window at the birds"

To get back some control I signed up for training courses about Alzheimer’s and am taking part in an online therapy course. Now I know what my ‘trigger points’ are – the things that can frustrate me, and how best to deal with them.

When you feel close to losing your temper, distraction is key. Count the seconds on the clock for a while, or look out the window at the birds, or the planes in the sky – anything to give yourself some space to calm down!

"It’s important to laugh at the silly things"

Jan picks up on changes in mood very quickly, so I try to keep things on a calm, happy level. Once I asked her where the TV remote was. After searching for ages she told me it was “on the drying rack”. She thought it had looked grubby so had given it a good wash! It was completely ruined, but we look back at that moment together and laugh about it – I think it’s important to laugh at the silly things.

"I make sure I’m plugged into as much support as I can"

Model railway for webA year ago Jan had a stroke and the doctors decided to reduce her medication. It resulted in her getting back on her feet – even the consultants were baffled! We still have good and bad days, but life is relatively stable at the moment and Jan is doing amazingly well. We play indoor bowls together every fortnight, and I make sure I’m plugged into as much support from as many organisations as I can.

Time away from caring is so important. My son helps out so I can spend half a day in my shed with my model railway. I’m an engineer by trade and have always been fascinated by old vehicles, and I enjoy going to historic shows.

When I was working, I couldn’t wait to retire. I wanted to start doing the things I wanted to do, not the things I had to do. Life doesn’t always turn out how you expect though, and now when I care for Jan I find myself spending most of my time doing things I have to do. But that’s ok – we have had a long and happy marriage, so being there for her now when she needs it is something very special.

  • Are you looking after a family member or friend who is older, ill or disabled? Join Carers UK and be part of our supportive community and movement for change.
  • Parkinson's Awareness Week is taking place on 18 - 24 April 2016. To find out more about life with Parkinson's visit Parkinson's UK.
  • Alzheimer's Soceity are trialling online therapy and support specially designed for carers of people with dementia. To find out more click here.

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