‘It is possible to live well with dementia – my mum is living proof’


Last week was another dementia awareness week for me.

The real one is coming up in May, but I had my own mini version as I finished reading 'Elizabeth is Missing' by Emma Healey and went to see 'Still Alice' at Cinema City.

'Still Alice' is based on the book by Lisa Genova. Both books try to help us understand what it is like to live with dementia. We won't know how successful they are unless we have the disease ourselves. It's not a pleasant prospect to know that if I live to be 85, there's a one in three chance that my brain will have holes in it.

I feel that's more likely because my mother has been diagnosed with Alzheimer's disease.

My way of coping with her initial diagnosis in 2011 was to switch from panic at the loss of my mother, feeling that I must put her into a care home (because that's where people with dementia have to go, right?), to pretending it wasn't happening.

A helpful friend, whose parents and ex-husband had the disease, passed on copies of the Alzheimer's Society newsletter.

For months I would let them collect in a heap, unopened. I was angry that I was now one of the afflicted – a member of a family living with dementia.

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I didn't want to read about other people's stories, other families, Memory Cafes and so on.

It took me two years to finally come to terms with the fact that my mum needs me to care for her and that she is no longer my strong and independent support. That's when I finally, reluctantly, opened the newsletters and started my journey to be as informed as possible.

'She has made it easy for all of us'

Fortunately, we have not yet had to consider external help, as my 93 year old stepfather is doing a fantastic job caring for her in their own home. The drugs help too. She has not deteriorated too much since her diagnosis, partly because mum didn't waste time seeking help.

She has made it easy for all of us, which is not always the case.

She told me that her memory was becoming unreliable and I would laugh it off and give her examples of my own untrustworthy recollections. I didn't want to acknowledge the prospect of her having the disease. She took no notice and went to the doctor.

I was there in her living room when the Memory Man came along and did that test. The one where you are asked questions about yourself, about current affairs, and told three things that you will be asked about later.

Frankly, I didn't do so well with the test myself.

Memory Man (who was really a specialist from the Norfolk & Norwich Hospital) was able to give an immediate diagnosis.

It felt like a bomb had exploded in my life. After the Memory Man left I walked with mum around her back garden in a state of shock. All I could do was try to soothe her by telling her that I would always be there for her.

Let's hope it's true.

My way of coping

Mum is doing comparatively well, while the family struggles to know how to help her and at the same time deal with the sense of loss. What we are going through is the same as for all families living with dementia, because it isn't just the person who lives with the disease. It is really important to remember that she may not be the same, but she is still mum inside there somewhere.

My way of coping now is to find out all I can about the disease, methods of preventing the disease and how to support people. I have been trained as a Dementia Friends Champion.

I am on a mission to make sure that society knows the signs and symptoms and, more importantly, shows patience and care when they come across someone who is forgetful and confused because their memory is shot to pieces.

I want my mum to be respected and treated with dignity when she is shopping in the supermarket, walking on the street and having a cup of tea in a café. She doesn't want pity, just understanding. There was good news last week as the Alzheimer's Society announced that they had reached their goal of signing up one million dementia friends. To me that's not enough, but it's a start.

Don't be afraid of the disease – become a dementia friend instead.

Find out more on their website www.dementiafriends.org.uk or email me.

Dementia information sessions are free and take about 45 minutes. The sessions are interactive and start by looking at how society views dementia in a negative way. I promise that by the end of the session you will have laughed and you will feel less threatened by the disease.

It is possible to live well with dementia – my mum is living proof.