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The five things my mum’s dementia has taught me

Miranda JohnsonYosra OsmanJade RolphMarcus BarberVicky Naylor

My mum was diagnosed with Alzheimer’s when I was 21 and her dementia progressed very quickly. She hasn’t been able to communicate with me for much of my adult life, except for a smile when I arrive to visit her. Despite this she has taught me some of life’s most important lessons over the past seven years without saying a word.

jade-and-her-mum

Jade and her mother Zöe Rolph in 2007, approximately one year after diagnosis. At this point her condition had already become obvious to people who met her and she had become quite withdrawn.

Here are the five things that I’ve learnt from my mum’s journey with dementia:

1. Seize the day

It’s clichéd but you really should seize the day. Although it’s pessimistic, you can’t be sure that you will be around to follow your ambitions later in life. Don’t put life off; have adventures now, do something a little crazy and try something new.

2. Don’t be afraid of difficult decisions

The dementia journey has been a string of difficult choices; which care home to choose? Do we adopt a Do Not Resuscitate order? Should we treat cancer? There isn’t a right answer and you always question your choices, but you have to make them anyway. Sometimes all you can do is trust your gut and go with it.

3. Celebrate achievements and talents

Nowadays I’m always telling people what an amazing and talented woman my mum is, and I wonder why I didn’t do this more often before she was ill. We should brush off the British tendency towards self-deprecation and understatement and celebrate the achievements of our friends and family loudly.

4. Work out what’s important in life pronto

Some people don’t work out what really matters to them until late in life, when they regret all the hours spent working late or trying to impress the neighbours. Dementia has taught me that the most important thing in my life are my friends and family. I hope that realising what matters early on will save me many regrets when I’m older and it’s too late to redistribute precious time.

5. Don’t underestimate small pleasures

My mum barely communicates with the outside world but I know that she still enjoys music because she sometimes taps her foot in time to a CD. It’s easy to focus our happiness on big holidays, exciting parties and new purchases, but the small pleasures like music make us just as happy. We should try to find small pleasures every day.

jade-mum

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3 Responses to The five things my mum’s dementia has taught me

  1. jules gee 20 May 2014 at 5:04 pm #

    Lovely story by Jade what a well informed and caring young lady she is. I wish more people had been so understanding, when my late Aunty had been diagnosed. I hope I have learned these lessons too and just to be more understanding and non judgemental of people, who are suffering with Dementia.

  2. stookman 21 May 2014 at 4:56 pm #

    Such a hard experience Jade, one that spouses don’t sign up for. My personal experience leads me to ask if the diagnosis of Alzheimers is correct. There are so many early onset neurological disorders…the majority of them under the heading FTD, or Picks disease. The critical research into these disorders is taking place at the Queens Square Brain Bank, part of the Institute of Neurological Studies in London.
    I wish you well on the difficult journey you are undertaking.

  3. Barry Sutton 21 May 2014 at 7:52 pm #

    My two daughters and I went through something very similar and my wife passed away 6 years ago aged 59. Your article brought back so many memories Jade, especially the thing about the “clock faces” in the cognitive test – Anne used to hate doing those tests! I have known Lloyd and Zoe for nearly 7 years, firstly through a “carer’s self-help” group, when we used to meet up regularly for lunch etc, and latterly as an NHS volunteer in a Dementia Carers Support Service. I used to see Lloyd fairly regularly but he has become a bit hard to contact of late and must find it difficult to get out socially. Please let him know, Jade, that he has friends who think about him and your Mum all the time, and that I am always available to meet up for a drink and a chat anytime – he has my number.

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