Helping with the long goodbye

The Mayor of Derry Colr. Kevin Campbell and the Mayor of Strabane Colr. Thomas Kerrigan attending the Alzhiemers Society celebration event for the delivery of services with, standing from left, Louise Connolly, home support services manager, Theresa Moore, home support services deputy manager, Michael McIvor, Foyle dementia support worker, Lorna McManus, locality manager for South and West, Fiona Brown, Strabane dementia support worker, and Dubheasa Gallagher, volunteer officer. (2311PG52)

The Mayor of Derry Colr. Kevin Campbell and the Mayor of Strabane Colr. Thomas Kerrigan attending the Alzhiemers Society celebration event for the delivery of services with, standing from left, Louise Connolly, home support services manager, Theresa Moore, home support services deputy manager, Michael McIvor, Foyle dementia support worker, Lorna McManus, locality manager for South and West, Fiona Brown, Strabane dementia support worker, and Dubheasa Gallagher, volunteer officer. (2311PG52)

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Claire McDermott speaks very calmly about her husband Sean’s diagnosis with dementia. She even laughs - finding a certain black humour - every now and again in some of the signs which showed that there might be a problem,

Dementia is often known as the Long Goodbye - the person we have loved and known is taken away from us even though they are phsyically still present in our lives. As local families struggle to deal with the challenges dementia can bring the Foyle Alzheimer’s Society is there to lend a helping hand. This week Journal reporter CLAIRE ALLAN found out more about the work they do, and spoke to one family devastated by the condition.

Claire McDermott speaks very calmly about her husband Sean’s diagnosis with dementia. She even laughs - finding a certain black humour - every now and again in some of the signs which showed that there might be a problem,

But when she talks of the plans they had for their retirement - the plans which have had to be shelved - she finds herself choked with emotion. The couple had planned to spend more time travelling - something they both loved. They wanted to spend their winters in Spain, touring with their beloved caravan.

Now, however, Sean’s condition has meant they can no longer travel. They have to stay close to home - to surroundings which Sean is familiar with. Claire says she has lost the husband she wanted to spend her retirement with and at times she feels “frustrated, lost, guilty and angry”.

Sean was diagnosed with dementia three years ago. The diagnosis came after Claire noticed he was becoming more and confused. “He couldn’t find the bedroom at home. He couldn’t find the bathroom. He would take a cup from the cupboard and put it back somewhere else - not being able to remember where he put it.

“And he started to see things. He would tell me there were men hanging off the roof. He saw aliens wearing earphones outside. He would tell me he saw soldiers with face paint on - he was adamant that he could.”

On another occasion, during a family holiday, Claire became aware something was seriously wrong. “Sean was great driver. We drove everywhere - we travelled a lot. All round Ireland. All around Scotland the highlands. Down through England to Dover. We got the ferry and drove down through France.

“We had a wee touring caravan and we went everywhere in it but on the last trip we took to France we were driving along a roundabout - and Sean couldn’t remember how to get off it. Eventually he took a turn off onto a dirt track and we had to try and get back on, and we ended up in the wrong lane.

“Once we got to the campsite he didn’t want to leave. He became scared. I remember phoning my sister and telling her if we ever got home we were never going anywhere again.”

Sean’s behaviour continued to deteriorate. On one occasion Claire says he walked into the kitchen dressed in a shirt, jumper, socks, shoes and his boxers over his pyjamas - ready to go out for the day.

On another occasion Claire was woken at 6 in the morning by a phonecall telling her that Sean had wandered down to her brother’s house five minutes away.

Sean was eventually diagnosed with Lewy Bodies Dementia - which explained his strange visions and his regression to more childlike behaviour.

The diagnosis was devastating - not only for Sean and Claire but for their extended family.

“It is as if the person you love becomes a child again - but a child with whom you can’t reason. I’ve lost the person I thought would be standing by my side.”

Claire’s relationship with her husband has changed completely - she has to take care of all his needs. She admits she even has to help his wash. She finds herself answering the same questions over and over again and at times she admits she feels “extremely frustrated”.

“We do think why us,” she says, “We had so many plans - so much we wanted to do.”

Now, Claire says she cannot leave Sean. He needs someone to be with him around the clock. The Lewy Bodies means that Sean is now afraid of shadows. As recently as Halloween night - after Claire nipped out to drop something at her brother’s house across the street - she returned to find her 66 year old husband in a very distressed state.

“He was shaking with fear. He kept saying he believed he was in Pellipar - an estate in Limavady which had a reputation for being haunted. It took a long time to convince him I was there and everything was okay. It was heartbreaking to watch.”

As Claire has worked to come to terms with Sean’s condition she has found the support of the Alzheimer’s Society in Derry and Limavady invaluable.

The couple attend the dementia cafes in Limavady and Derry which affords them a social outlet they can enjoy together - and also a place where they can meet people going through similar, make friends and gain support from each other.

Claire said one of the most difficult aspects of learning to live with dementia is that people who would have been friends with the couple have distanced themselves since Sean’s diagnosis.

“I just think maybe people don’t know how to deal with it. They feel awkward or embarrassed, I suppose. But Sean notices it. He knows who has been to see him. We don’t expect people to come and sit for hours - or to take on caring for him - but just to call in for a cup of tea.

“Just to say hello, that would make a big difference.”

Claire and Sean and their family have made use of the support services offered by the Alzheimer’s Society and Claire also avails of the sitting service twice a week. The sitting service means that for a few hours every week Claire can get out and about knowing that Sean is being well looked after by someone with experience of caring for someone with dementia.

Claire has also made use of the advice workers to get the help she needs. “Living with someone with dementia can be very lonely - you do feel isolated but the Alzheimer’s Society has helped us to feel less alone.”