How we used precious memories to reach parents living with dementia
As actor Christopher Eccleston becomes the latest celebrity to back Alzheimer's charities seeking a cure, we talk to two local people about how they cope when loved ones have the illness. Interviews: Kerry McKittrick and Karen Ireland
Up to 20,000 people in Northern Ireland suffer from dementia yet still there is confusion about the debilitating illness which can rob people of their most precious memories.
Now, Alzheimer's Research UK has launched its Fightback campaign which features actor Christopher Eccleston (below) talking about his late father Ronnie who suffered from dementia before he passed away from pneumonia in 2012. The former Doctor Who actor can be seen on social media talking about how this cruel disease robbed his dad of personality as the condition took over.
The founders of Alzheimer's Research say their aim is to educate people about the different types of dementia while searching for a cure, and not accept it as an inevitable consequence of growing old.
Meanwhile, local actor Jimmy Nesbitt also added his weight to the cause by speaking about how important it is for groups such as Alzheimer's Research to find a way of stopping this devastating illness, after he lost his mum May to Alzheimer's Disease in 2011.
Author Terry Pratchett, who died last March, having been diagnosed with Alzheimer's in 2007, was also a staunch advocate of research, having donated substantially to the trust and made a BBC documentary chronicling his experiences with the disease.
We talk to local people who are dealing with the affects of dementia on their loved ones.
Roisin Cartmill (43) is a residential social worker. She lives in Londonderry with her husband Tony and children Jason (26) and Bethany (14). Her mother Ann Mooring (76) suffers from dementia. She says:
My mum Ann was diagnosed with dementia a few years ago. At first she just kept forgetting things and then it progressed until it wasn't safe for her to live by herself any more.
Six years ago she went into a care home which was more like an assisted living facility where she could come and go as she pleased.
Again, her condition deteriorated and she needed more help, so about three years ago she was put in a care home which is dedicated to helping those with dementia.
Since mum was diagnosed with dementia, we've found the health care services to be very good. We didn't know if we would be able to get mum a place in a home which would give her the right kind of care - you hear about so many bed shortages these days. We've been very lucky with social workers and services, so mum has always had the right kind of care.
I'm the second youngest of six girls - Marie, Karen, Jackie, Angela, myself and Joanne - and from the very beginning we've all been involved in mum's care and keeping in contact with the social workers. We've all felt part of the decision-making process and although mum's condition has deteriorated now, as far as she could be, she was always involved in the decisions about her care, too.
Sometimes mum recognises all of us with no trouble at all but other times she doesn't. It's actually easier on her now that she has progressed - before, when she had more awareness, she would get upset if she couldn't remember things or places.
Sometimes she doesn't know who I am, so I never call her mummy straight away. I wait to see if she can remember me so that I don't upset her. She usually knows there's some kind of relationship there.
She will say to me that she doesn't know who I am in her head but she can feel me in her heart. She will wonder if I'm her mother, sister or daughter. You can get a sense of what she remembers when you first walk in to see her.
It can be upsetting for all of us - we're a very close family and there wouldn’t be a day that goes by when I’m not in contact with some of my sisters. We have a schedule drawn up so that at least one of us goes and see our mum every day.
We do a lot of things for mum — it was the centre activity co-ordinator’s idea to create a memory box for mum.
We spent a whole night putting things into the box and telling the story behind each item.
My mum was always very glamorous and would never been seen outside without her hair done and we all joke that the last thing she’ll wonder about is if her hair is okay.
Now we have the box and we’ll go through it and the centre staff go through it with her, too. We have everything in there from photos to old newspaper articles.
We had to have the Oil of Olay moisturising cream in there too — she always showed us how to moisturise upwards to prevent wrinkles.
We take mum out all the time, too — one of her favourite things to do before she got sick was to go for a drive to Buncrana and get a pink and white poke.
Now when we take her to do that, it’s like the first time for her all over again and she loves it just as much.
Mum always loved music and there was always a radio playing in her house.
Now if you put on music that she likes she’ll remember it and start singing along. She loves having her family around her, too, so we still throw a big party for her birthday each year.
We do think that all of this is helping mum. I think relationships are one of the most important things — she might not know which one of us she’s talking to but she will remember the relationship.”
Una Trainor (32) is a trainee counsellor and she lives in Castlewellan with her husband Francis and their three children Katie Rose (13), Aine (10) and Frances (5). Una’s dad George Walsh suffered from dementia for 10 years before he passed away in November 2014, aged 76. She says:
Dementia is the cruellest of all illnesses. It robbed me of my dad and my children of their grandfather. I used to say dad had died without dying and was alive without living.
He took a stroke when he was about 67 and that left him confused and with the onset of dementia.
Up until then he had been a big, fit healthy man. He was a really tall man and was known as a gentle giant, who everyone loved. He had worked in the building trade for years and then as a bouncer on the door in a club.
The hardest thing in the beginning was watching my mum feed and dress her husband. It was heartbreaking and so hard for mum. In the end, she took ill and we thought it was just stress, but she was diagnosed with inoperable cancer on Christmas Eve and died the following March.
That left my six siblings and I to care for my dad and eventually we found a really good nursing home in Spa, Ballynahinch. They were fantastic with him, but it was a slow painful decline.
Slowly, he stopped recognising us and was able to do less and less for himself.
The worst thing was that my grandmother had dementia and dad always said if that ever happens to me please just end my life with tablets and a bottle of Vodka.
We had to watch him suffer and he would cry out like a baby wanting his mum. Watching the person you love so much and look up to most in the world fade away is devastating.
Every day I would visit dad and hope he would recognise me and that there would be some kind of interaction but he never knew who any of us were.
Once a month all the siblings would get together in the nursing home and on those occasions we would see him smile and laugh along with us. It was as though he knew his whole family had come together.
I used to play music to him all the time, as he had loved a singalong, but he never showed any interest.
He would just sit there looking lost and crying. He was dead inside and already gone.
In the end we used to pray that he would be released from the torture he was going through, as it wasn’t fair and no one wanted to watch it.
He wasn’t our dad and we knew he wouldn’t want this.
Dad was a big jolly man who would walk for miles and now he was sitting helpless and lost.
Suddenly, he was the child and I was the parent looking after him.
He lost loads of weight and was just fading away.
I do worry that this condition is hereditary as my grandmother had it and then my dad. I would never want my children to have to go through what we went through and watch that.
You wouldn’t wish it on anyone.”
For more details visit, http://www.alzheimersresearchuk.org/