Carol's story

It was a cold rainy night when there was a knock my door.  ‘Mum, what are you doing here?’ I said to a freezing, soaking wet Mum.  I took her in and gave her a towel and a hot drink.  She finally explained she had lost her keys.  Her speech had recently gone really bad but she always assured me it was because she had her teeth out.  I took her back to her house to see the front door wide open.  I told Mum that was dangerous and she shouldn’t leave her door open.  The keys were under her pillow - we laughed and that was that.

Another night my telephone was ringing at 3am, I hurried to answer it and it was Mum asking, ‘Was I in?’  I told her it was in the middle of the night and she had to go back to bed.  Again we laughed as often people get mixed up don’t they? 

Making promises to eachother

Me and my sister Susan took Mum to the hospital.  The doctor said he thought it was Alzheimer’s disease by her speech.  I took Mum back to her house and went into the kitchen to make a coffee.  ‘What is Alzheimer’s?’ I thought as I cried to myself.  Mum came in the kitchen and she switched the gas on and walked away without lighting it.  I switched the gas off and went into the living room asking what was she doing.  She explained that she was trying to light the fire in the living room.  ‘What has that got to do with the cooker?’ I yelled...what was going on?

Eventually Mum had a brain scan and the results came back - vascular dementia.  She had had lots of TIA's (mini strokes) and each stroke had attacked different parts of her brain.  Mum was very scared and I remember telling her we would make a promise to eachother.  My promise was to be with her til her last breath and hers was that no matter what she forgot she wouldn’t forget we loved eachother.

Caring for mum

I was always close to Mum.  We lived close by eachother and I became her sole carer.  Eventually, I was told that she needed to go into a home - she went and hated it.  Day after day she would cry and beg me to take her home.  My heart was being ripped out so one morning, after her being there for five weeks; I walked in the home and I said, ‘Mum, do you want to come and live with me?’  I will always remember the smile she gave me as she said, ‘Yes.’  It was lovely that first night at mine with me and my three kids.  Mum was so happy and so was I, we were together. 

As time went on I became very protective towards her and I spoke for her a lot if she was struggling.  I would finish her sentences but one day, she couldn’t speak.  A word would come out, but not the right word.  I now urge everyone not to speak for the person - let them speak and so what if it’s wrong?  It doesn’t matter

Role reversal

I got Mum into a day centre and the night before she first went I got scared in case someone touched her in the wrong way.  Before she went to bed, I showed her where no one was allowed to touch her.  I went to bed broken at what I had just had to do.  This was my Mum who I was telling where her private places are.  It was total role reversal; suddenly I was Mum to my Mum. 

One day whilst I was colouring my hair, Mum came downstairs and asked me did I want a fight?  She was angry and I was scared.  I said ‘No, I don’t want to fight with you’ and with that she ran out of my house.  I ran to the door crying, shouting at her to come back but she carried on running.  I couldn’t run out in my pyjama’s with colour on my hair so I grabbed the phone and rang the police.  Everyone was looking for her.  I couldn’t stop being sick because they couldn’t find her. 

Then at 4.30pm the day centre bus brought her home.  Apparently they had picked her up on the road and never thought to tell me.  I went berserk.  Mum was oblivious to what had happened but Social Services sectioned her.  I was heartbroken, Mum was too.  I had a carer breakdown.  I felt such a complete failure.  A bad daughter and at the same time a bad mum as I’d shown my kids a side to their Nan they never should have seen. 

No longer able to care for mum

We had a fab six years with lots of fun but Mums needs changed and I couldn’t cope anymore.  I visited every day and Mum would cry to come home; I was dying inside.  But Mum did settle and life got better because I knew she was OK.  She reached a point where she couldn’t feed herself and kept falling over.  They gave her meds to sit her down, her speech went completely and she aged to looking very old.  She lost weight and looked so frail.  That’s how she was for about the next five years - in bed with padding around her.

On 8th December 2013, I got a phone call.  Mum was in A&E with a suspected broken shoulder.  Her heart was only 69 so it was strong and she wasn’t giving in.  She lasted 19 days -15 without food, and no meds, just pain relief to keep her comfortable.  Boxing Day came and Mum peacefully grew her wings and flew to Heaven.  I will always believe we both kept our promises.  She knew I was there - she would always kick her little legs when she heard my voice.  Eye contact was rare but it was so nice when we did as I could see My Gorgeous Mum still there.
 
I will be honest; I actually thought I was going to die after Mum passed away.  I was in a whirl, left with nothing.  That’s OK now as I know she is dementia free as an angel.  My angel.  I got strong and became an ambassador for dementia with the Purple Angel Campaign.  I spread awareness of dementia around Warrington.  I want to help people living with dementia to live at home a lot longer, knowing people in shops won’t rush or ridicule and will help them.

- Carol Bevin's mum was diagnosed with vascular dementia at the age of 56 and lived with the condition for 15 years.  Carol is now working to make her hometown of Warrington 'dementia friendly'.  You can read more about Carol's campaign here

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