In the shoes of … | Barry Rainey helping his Mum live well with dementia

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Regular readers will remember the exciting series of Whose Shoes? workshops and associated events last year in Kent, in partnership with a fantastic group of passionate people from the Age UK Consortium, led by Sandra Springett, CEO of Age UK, Tunbridge Wells and Diane Aslett who manages the consortium.

I personally ran the opening events and then handed over to this local team to run over 20 workshops themselves before joining them for the final workshop. I was delighted and intrigued when they told me that a family of three – a man (who turned out to be Barry – the writer of this guest blog) and his sister and niece, kept signing up for different workshops as they moved round the county over the course of the project. So I was delighted to meet Barry and his family and learn more about their quest to understand dementia and help their Mum / grandmother to live well with the condition. Barry agreed to tell his story. I love it for its insights and honesty:

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042_DSC_2187c 038_DSC_2180c 074_DSC_2282c 059_DSC_2230cOver the last year or so I have gone to quite a few meetings concerning dementia, mainly to learn more about what my Mum is going through, and also to meet others going through the same experience.

I was asked recently why I went to the big meeting of Whose Shoes? (Barry means the ’round-up workshop we held at the end of our programme of 16 workshops in West Kent, commissioned by West Kent CCG)  and what I got from it.

Well there where three reasons I went.

1) We had been to four similar Whose Shoes? sessions leading to the big one and, though I learn new things as I go, I thought going to this final session would be a great opportunity and was not disappointed.

2) It seems at times the more confused I am about dementia, the more I am hoping to take  the confusion away. Alas that was not so successful – there is always more to learn!

3) The main reason I went to this particular event was because I had heard a lot about a guy called Ken Howard who got dementia at a young age and goes to meetings to talk about his experiences. Ken is truly a celebrity  in his own right, and to put icing on the cake, I was lucky enough to have a one to one chat with him about the subject.

Dementia, is it an illness? Well yes it is. Dementia is an illness of the mind. There are different types (such as Alzheimer’s) and they all affect people in different ways.

Dementia can be very hard to live with, especially for say wives looking after husbands 24 /7 or vice versa, but with determination and help, people can live with it very well. Ken Howard is living proof of this. Since he was diagnosed a few years ago, he has re-built his Harley Davison motorbike. As I say, he has become a bit of a celebrity in the world of dementia, doing talks and has also made a video of what happened to lead up to his current life. Remarkable.

My Mum was diagnosed with dementia only a short while ago, though she had had what they call early onset dementia for about five years. Before the dementia, Mum could be a very stubborn person – in fact truth be known she could be a pain in the rear. I do not mean that in a bad way, as an example Mum worked full time when we were younger and expected help with the housework and woe betide if it wasn’t done before she got home from work. And being a young teenage male, I definitely loved housework – but between us all we got it done so I guess she won that one.

My father died about 40 years ago and at the time Mum went through a very hard time. Not only had she lost the man she loved, but now she had two children to bring up on her own. I was 12 at the time and my sister Elaine was 9, and also Nan was living with us, and in those days there was no help like there is in this day and age, you where just expected to pick up the pieces and get on with it. Hence with a lack of help from family and experts, except for some tablets for depression, Mum went through many years in a depressed state. But with determination to do the best she could for her family  and hold down a full time job into the bargain I am today proud to say she got through it, and though she had other bouts of depression over the years, she has always managed to win out and stay  in control of her life.

Though Mum and I have not always seen eye to eye, we have always loved each other in our own way, though till I left home people would have said tolerated more than loved. Both stubborn people who clashed a lot I guess.

After I had left home, got married and started a family of my own, Mum played a big part in our lives and she enjoyed being a grandmother. She visited us regularly and us her, even taking her eldest granddaughter Amy to Spain with her on holiday. We also had holidays all together. The most memorable was a trip to Jersey where Mum enjoyed showing the girls around an island we visited regularly as Mum had an Aunt there we went to see a lot.

Mum worked for many years at Reed Mill in the offices till she was made redundant at about 54 years old, then for a couple of years she did some temping work until my sister Elaine started a family. Then she gave up work so that she could look after Abigail and Simon, Elaine’s two children so that she could go back to work for Kent County Council.

Mum enjoyed this time in her life very much and was a little disappointed when the kids became old enough to look after themselves after school till Elaine got home from work. And so was not needed so much, though she still visited regularly and helped when she could.

Mum has always enjoyed a couple of weeks holiday every year and up till a few years ago, before she became unable to go on her own, she alternated between Spain and Greece, but as the dementia started to take hold we decided that it would be better if she holidayed in this country, and so this year my sister Elaine took her to Cornwall for a week.

Mum is coping quite well at home, she no longer does any real work on her own but with a little encouragement she does help with things like dusting and doing the washing. I think one of the best things that helps is that she is routine orientated, i.e  she has a cuppa at certain times throughout the day. The routine is put kettle on, put coffee in cup, add milk, put water in stir then go back to the telly. She also has carers in a couple of times a day, and with help from my sister and daughter, and of cause me chipping in, which is nowhere near as much as the others, but I find being a night worker I am more restricted in what I can do, in fact if Elaine and Amy did not do as much as they do, I do not think we would be coping anywhere near as well as we do, God bless them.

Not understanding dementia and how bad it can get, we live and hope that with love and care and a bit of help she will be good for a few more years yet.

Dementia is still a huge learning curve for everyone including the experts. Mum is now at what they call stage 3 and I am told there are 5 stages to Dementia, so don’t know what is round the corner but I am told some people are slower than others at going through the various stages, so it’s a case of seeing what happens next.

At the moment we are going ok, and with the help of people such as Age Concern, and a pretty good set of carers that Mum has we move forwards daily.

Thank you Barry for taking the time to share your story and we wish you, your Mum and whole family – and indeed all our readers…

Best wishes for 2015

Please post comments and particularly messages of encouragement for Barry and other family carers who look after loved ones and help them live well with dementia.

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About Gill Phillips - Whose Shoes?

Passionate about personalisation in health & social care. Creator of Whose Shoes? - an imaginative approach to helping people work together to improve lives. http://nutshellcomms.co.uk
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