"It's my joy to do the best for Ann" - Chris's story
Chris is 78 and is a carer for his wife Ann, who is 72 and has been living with Parkinson’s for over 12 years. Here he shares their journey together.
Ann and I have been married for 51 years and have had a great life. We have no children and we’ve always lived alone. That is, until 12 years ago when someone else moved in with us - 'Mr Parkinson'.
We were leading active and busy lives, and neither of us really took much notice of the early signs. Ann was working as a nurse and was getting increasingly tired at work. Her manager had also noticed that Ann was listless and was lacking her old enthusiasm and love for her job. We knew that something wasn’t right, but it didn’t seem very significant at the time.
Ann began spending large parts of the day lying down and resting and eventually she was referred to a neurologist. In her first appointment, she was told that her symptoms could be Parkinson’s.
I wasn’t very worried at the time, mostly because I was ignorant about what Parkinson’s actually meant. I had always thought that Parkinson’s was just a bit of shaking, so I was surprised that Ann was more concerned.
We discovered that there are a huge variety of activities available that can help with Parkinson’s, and so we got involved in singing groups, dance classes and walking.
Life transformed
After the diagnosis, our lives were transformed, but in many ways the changes were positive. We discovered that there are a huge variety of activities available that can help with Parkinson’s, and so we got involved in singing groups, dance classes and walking.
We went to the meetings of our local branch of Parkinson’s UK and made friends with other people living with Parkinson’s.
After about 6 years, our lives changed again. It didn’t happen all at once, but gradually things started going downhill.
Initially we would be out at an activity and Ann would experience wearing off. We would have to leave, sometimes before the activity had even started. This began happening more and more often, and eventually we stopped attending activities altogether.
I often felt despondent about Ann’s worsening symptoms - it was so hard to see the person I love changing from someone full of life and character to a shadow of herself. I have often cried thinking about the frustration she feels every day.
Disappointment
Adjusting medications didn’t make much of a difference to Ann’s symptoms. Eventually her consultant suggested that she could be a candidate for deep brain stimulation (DBS). I was really hopeful about the potential benefits.
The care Ann received was excellent and the surgery went well, but it had a limited impact on her symptoms - her tiredness, speech problems and poor mobility didn’t get any better.
I was told before the surgery that it might not work and I didn’t expect a miraculous recovery, but looking back I did have very high expectations. It was hugely disappointing when I realised that Ann was one of the unlucky ones who didn’t see much improvement.
But I cope by being happy with what I have. My faith also helps me to stay strong and make the most of life’s blessings.
Life as a carer
These days I care for Ann in lots of ways. Every day is different, because Parkinson’s is always different. On good days Ann is quite independent, and can help out with the housework and get to the car without support.
On other days she might not be able to do much at all, and will rely on me for almost everything including dressing, preparing meals and helping her get to the bathroom.
I do have some help from friends nearby, but for the most part I want to be the one looking after Ann. I recognise that she still wants to do some things herself, and that’s so important for her self-worth and self-esteem.
I see my beautiful wife and everything she has to go through every day, and I see her facing it all with courage and a wonderful sense of humour. She has taught me genuine patience, love and unselfishness that I would never have learnt otherwise.
A blessing in disguise
To say Parkinson’s is a blessing may not be quite right, but it really helps me to see it that way. It’s made me reflect more deeply. I always thought I was kind and compassionate, but now I realise that I didn’t understand what that really meant.
We’ve also learnt how kind other people are. Complete strangers offer to help when they see me getting the wheelchair out of the car.
Often we hear, "It must be so awful for you”. People feel sorry for us, but I always appreciate this as an expression of kindness and empathy rather than pity.
Ann and I still have fun, even though we can’t take part in activities like we used to. We often play old tunes by Max Bygraves or Lonnie Donnegan, and laugh at all the funny parts we’ve heard hundreds of times before.
I see my beautiful wife and everything she has to go through every day, and I see her facing it all with courage and a wonderful sense of humour. She has taught me genuine patience, love and unselfishness that I would never have learnt otherwise.
It’s my joy to do my best for Ann, to be there to do the things she can’t, and to help her maintain her self-worth and dignity throughout it all.
