‘We try to remember and hold on to what she was like’ (From The Argus)
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‘We try to remember and hold on to what she was like’
3:30pm Thursday 9th February 2012 in Comment and Analysis
Jeanne Howe, 72, is one of thousands of people in Sussex being treated for Alzhiemer's disease. Here, her daughter Merill Jones, 46, from Shoreham, tells health reporter Siobhan Ryan how disease has devastated her family and calls for greater awareness of an illness that is likely to affect a growing number of people for many years to come.
My mum loved a party, enjoyed going to dances, would often invite people around for dinner and did a lot of socialising.
Friends were important to her and so was her family.
She was a secondary school teacher who spent a lot of time working with pupils who were more challenging and needed extra support, and she was very good at her job.
She used to help out with baby sitting when I first had Brendan and Harrison, and she loved her grandchildren.
My parents had a home in France and their plan had been to retire there.
My husband Andy, myself and our two children Brendan, now 14, and Harrison, 11, would go out and spend holidays there.
It was probably when she was in her early 60s that we started to notice small things going wrong.
Struggle
She started to struggle with the Euro currency.
On another occasion she lost the passports as she and my dad, Tony, were about to get the Eurostar to France.
There was also an incident where she was driving to work, left her indicator on and nearly caused a serious accident.
These were all put down to just being one of those things, but looking back you can see a pattern forming.
When she retired, I noticed my mum was not her usual lively self. It was like a light had been switched off.
She just seemed disengaged. Her normal animation was not there.
I thought she was suffering from depression. She had given up work and did not have a structure to her day any more.
She was also taking medication for blood pressure and I wondered if that was having an impact.
However, she would not go and see a doctor.
She was becoming a bit anxious and suspicious.
I think she knew something was not right but did not want to confront it.
She would have problems making a cup of tea or getting dressed. She would put clothes on back to front.
We used to try and laugh about it but obviously it was a concern and upsetting.
Unfortunately by the time we persuaded her to go and see her GP and be referred to a consultant, the Alzheimer’s had taken hold and the medication did not have a real effect.
Frightening diagnosis
An earlier diagnosis might have slowed the progress of the disease.
I never really discussed it with her but I knew she did with my dad. And I know she was scared.
Once you get a diagnosis it is very frightening as the future is so uncertain and there is really no going back.
Over the years her condition deteriorated.
She would wander off alone around the neighbourhood or when out shopping. Police and security were called in to assist on a couple of occasions.
She did a lot of pacing about, asking the same questions over and over. “Where are we going? What are we doing?”
It was distressing not just for her and us but it was also for the children.
They were old enough to know this was not right.
We did not think it fair to lie to the children and so we told them she was poorly and she was not going to get better.
My father was her main carer with support from social services, but her condition was worsening.
She became increasingly unsteady on her feet. She lost her perspective and would not stop walking until she collided with an object or the wall.
Last March she fell and badly broke her leg.
She had an operation at Worthing Hospital and then went to Southlands Hospital in Shoreham for rehabilitation but staff could not teach her to walk.
'Devastating'
We had to go through a process of assessment that felt intrusive but it had to be done.
The end result was that the hospital and council felt she needed to be in a home.
It was devastating for him.
We had to find a place in a hurry and she is now being cared for at a home in Worthing, Berkeley Lodge, which is doing a fantastic job.
However, we do not really want her to be in there.
My dad goes in every day to see her, and the rest of the family visit as much as they can.
It is upsetting as she doesn’t really recognise us any more, as such.
She responds to my father and acknowledges a link and relationship.
When she was becoming very ill she would sometimes get aggressive and deny she even had a husband.
She couldn’t help it, of course.
What we try to do is remember and hold on to what she was like.
We were recently watching a video that was taken one Christmas when Brendan was very young and my mother had picked him up and was holding him.
My younger son was watching and he said “Wow. Is that what Granny used to be like?” That made me cry a lot because he had only really ever known her as poorly.
We try not to dwell on things too much but there are bad days. I feel that my mum doesn’t deserve this.
I see the parents of my friends and they are all healthy and well, and I just think ‘you don’t know how lucky you are’.
There are times when I feel shocked, upset and angry.
I had a mum.
I was going to have a lovely, jolly granny for my children, and we have lost all of that.
She has given so much and helped so many people but her happy retirement and her grandchildren have been snatched away from her.
The doctors tell me she is not aware of what has happened to her, and I really hope that is the case Focus on the good things But we have to focus on the good things and we will always have those memories.
I would encourage people to try and get an early diagnosis as soon as possible to slow the progress of this disease.
This is a problem that is only going to grow and grow but I still feel we have not come to grips with understanding it.
I used to think Alzheimer's was just about being a bit forgetful – but there is so much more to it than that.
There needs to be more awareness and understanding because it can affect anyone, and this is why we support Alzheimer’s Research UK and its vital work.
Andy Jones is undertaking to 300km London to Paris bike ride in June.
To support him, visit www.justgiving.com/andy-jonesL2P.
