Mandy, tell us about your Mum Jean

My Mum was a Super Woman.  She could do anything and everything. When she left school she got her dream job which was to become a nurse.  It was all she had ever wanted to do.  She loved being a nurse, helping and caring for others.  Once she had children she decided to stay at home and raise us.  Whilst rushing around looking after us she still wanted to do more.  Mum threw herself into charity work, fundraising and volunteering to help children with special needs.  She learnt new skills like speaking French, cooking, dressmaking.  She was a great cook, and made the most amazing wedding cakes with edible flowers;  she made clothes and even hats. She did embroidery and tapestry and insisted that the back of the work had to be as good as the front.  Mum was a wonderful knitter and made the most exquisite shawls for babies.  She made curtains and cushions.  She literally did it all, until Alzheimer’s took it all away from her

How did you realise she had Alzheimer’s?

We had noticed gradual changes in Mum over a number of years.  Small things but signs that she was losing ability to do them.  One day she drove to her friend in a village nearby about 10 minutes drive.  On the way back she couldn’t remember where to go and it took her 2 hours to find her way home.  It started like that; just the odd moment of loss of memory and then everything was back to normal. 

Was it difficult for Jean to accept her condition?

When Mum finally agreed to go for a memory test she was in denial.  Her greatest excuse was that she was tired and so just a little confused.  In reality she was terrified as she knew what was to come.  The diagnosis came during lockdown. That was 4 years ago and we have lived together ever since.  Alternating between our individual houses.

It must have been difficult to see her behaviours change?

During the first few months of us living together I noticed that she had become almost childish when chatting to her friends, then she got confused where things were, like the tea and coffee.  I started putting reminders around the house but Mum hated them and took them down.  She was embarrassed and didn’t want her friends to know. The saddest thing to see was the fear on her face when she realised that couldn’t remember things.  She was so scared and lost, and it broke my heart to see her like that.

Was it difficult to manage these changes in Jean’s behaviour?

It was and is so hard to manage Mum's behaviour.  Seeing her try to complete tasks but not being able to, then seeing her frustration.  You then become the parent, reassuring them that it doesn't matter and praising them for how they have already helped in doing that task.  I tried to give Mum some independence.  So every day she would take the dogs out for a walk on her own.  She had a regular route that she took and managed to continue her routine for the first year and half.  Then one day somebody drove her and the dogs back home as she had got lost.  That was the last time she went out on her own.

How has Jean’s condition deteriorated?

Now Mum has difficulty stringing sentences together.  She gets lost halfway through a sentence then something catches her eye and then the conversation takes a totally different route.  I used to be able to understand what she meant, but now it's almost impossible.  All those skills she once had have vanished.  There is no cooking, knitting, sewing; nothing.  And this will only deteriorate further.

How is it for you, living with a loved one with dementia?

The last year and a half Mum has not been able to be left alone.  I can’t just pop out.  I can’t go out with my friends for dinner unless I have a babysitter.  The cost for care is almost prohibitive so I often burden my sons with helping out; having to take days off work so that I can attend meetings or have a day off.   A little moment of respite for me and that makes me extremely proud and grateful but also guilt ridden for making them carers too.  Without them, I wouldn't have been able to cope with Mum.  Mum now follows me around the house.  If I get up to go somewhere in the house, she is right behind me.  If I’m in another room working, she just pops in whether I’m on a zoom call or not, and just stares at me.  It’s suffocating for me, but a need for reassurance for her.  She needs to know that she is not alone, and that there is someone there to care for her.

Why is finding a cure for Alzheimer’s so important?

My Mum, the most amazing woman, so capable can no longer even make a cup of tea. The tables have turned.  Mum was the one who cared for me, bathed me, cooked for me, washed and ironed my clothes, now I do all that for her.  I lost my Mum a long time ago.  The Mum that I knew.  The Mum that loved, cherished and nurtured me.  Alzheimer’s is a cruel disease.  It destroys lives, not just those that have the illness but those who love and care for them.

Tell us about your fundraising efforts for Alzheimer’s Society?

We have raised money for the charity over the years since Jean was diagnosed, we also have other members of the team who’s parents have suffered with dementia. Melissa climbed Kilimanjaro a few years ago in aid of the charity.

This year, we are hoping to raise more money by the whole team taking part in the 10km Thames Path Challenge on September 14th. Our target is £2,000 but we hope to raise more.  The money we raise will help fund vital research and support services for people affected by Alzheimer’s.