Living with dementia in the family changes everything

04-12-17
Dementia Alzheimer's care caring for people at home Lewy bodies families and dementia dementia champion living with dementia care at home Living with dementia in the family struggling with dementia manage dementia at home Alzheimer's Society how to ease anxiety with dementia vascular dementia Lewy bodies Pick's disease people in the UK under the age of 65 with dementia people in the UK with dementia

Living with Dementia in the family changes everything. I want to start by saying that by no means am I an expert on dementia! However, I have been affected by it in many ways, and I am certainly not alone. When it hits your family everything changes

There are over 850,000 people in the UK with dementia. It mainly affects people over the age of 65 and the likelihood of developing dementia increases significantly with age. However, younger people can be affected too. There are more than 42,000 people in the UK under the age of 65 with dementia. 

            Dementia is an “umbrella” term, and there are many different types, the most recognisable being Alzheimer’s. Other common forms are Vascular dementia, dementia with Lewy bodies and Pick’s disease to name a few. It is important for anyone who has problems with their memory to get a proper assessment – finding out the right cause may allow the person to get the right treatment – and it is not always dementia.

I have worked in the care industry for over 15 years and many of our lovely clients had dementia themselves or their partners did. It was always easy to guide them through their choices and develop live-in support for them, and I took huge pleasure in seeing how their lives and the lives of their family members improved.

All very clinical and very easy to deal with – until it impacted my own family – and not just a remote family member -  but my beautiful, vibrant, exceptional, precious mother. Two years ago she was diagnosed with vascular dementia, and all our lives slowly changed. It has been hard to see her quietly disappear into herself and for all the interesting and challenging discussions we used to have, stop. I struggled with it in the beginning, even though I had helped so many other people over the years – not so easy when it is your own flesh-and-blood. Surprisingly I have not known  how to help her and support her, living with constant guilt that I am “not doing enough” while juggling my own children and a career……such a common story.

So I decided to stop fighting how I felt and embrace it and gain information. The Alzheimer’s society was an obvious Initial choice. Through them I became a dementia friend and have now graduated to a dementia champion, giving information sessions in the community. Their information has been invaluable and enabled me to understand some of my mother’s behaviour and how to ease her anxiety. I understand so much better why she can’t remember what happened yesterday, or last year or ten years ago – but also that the emotion associated with a memory lives on. It is so important that while she may forget that we had lunch last week, that I make it a happy occasion where she knows I love her – because that she will not forget.

I founded Eximius live-in care for my mother, and people like her. To help them live fulfilling and happy lives, and help alleviate the pressure and guilt for their families. Live-in support is a wonderful gift for your parents or loved ones who took care of you when you needed it. I am surrounded by a wonderful team, all sharing the same vision and culture, ready to provide the happiest and most enriching care we can.      

                                                             

My Mother is not “struggling” with dementia, as is often stated – she is “living “ with it – and the rest of us in society must learn to live with it too, with empathy, understanding and care.

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About the author

Kate Hetzel

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I have had a very varied career. I started in the food industry and my first job was working on flavours in Angel Delight! This led me to spend 16 happy years in the flavour industry, 8 of them in Cincinnati, USA, working with the major fast-food companies.

When I returned to the UK in 2000 I had young children and decided that to ensure some flexibility I would start my own business. Fate led me to the care business and I bought a leading home-care franchise. I ran this for 13 years and built it to a turnover of £3 million. I was able to sell it  and this has allowed me to build a business in Live-in care - an area I have always been passionate about...........


 

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