Living with dementia magazine December 2012/January 2013

Getting on with life after caring for someone with dementia can leave people feeling bereft, but Fiona Madden talks to one former carer who is now very active in his local community.

Kenneth Ashworth became concerned when his partner James took longer than usual to recover after a hip replacement operation in 1996 and his left hand began shaking aggressively. James was then diagnosed with Parkinson’s disease.

Kenneth's parents lived with him and James in Eastbourne. When his mother became terminally ill and passed away in 2002, this had an extreme effect on his partner.

Kenneth says,

'It knocked James sideways. He felt a great deal about Mum. It really upset him and he came down a few steps at once. I asked the doctor to reassess because he was in such a bad way.'

James was admitted to hospital for 10 days and diagnosed with Lewy body dementia. Kenneth juggled his career as a hotel manager with looking after James.

'I had some very good friends helping and I brought in someone to do the housework. My dad was still quite active at the time and was helping during the day. I was doing flexitime and my boss adapted to my situation. We struggled through.'

Worsening condition

During 2005 James' condition worsened, which took its toll on Kenneth. He explains,

'When James went to bed his kidneys seemed to start working. He could be up on average five times a night to spend a penny. The worst night he got up 11 times – by the time I was dropping off he was getting up again.'

Kenneth handed in his notice at work to become a full-time carer for James and his father, who passed away shortly after.

He noticed changes in James such as a lack of interest in things he used to enjoy like reading the newspaper, watching television and engaging in conversation.

James had also started to experience hallucinations and would wake up screaming from 'horrendous nightmares'.

In October 2010 James was rushed to hospital with chest pains. Afterwards he began to experience bad headaches and his dementia progressed rapidly until his passing in January 2011.

After the loss

Kenneth says,

'When caring for someone with dementia people say you've already done your grieving. It’s not that you're hoping they will die but you know they will, so you think it will be a release. But the feeling when he went was quite horrendous.

'The morning after the loss I had a feeling of uselessness. You've been caring for someone for years and all of a sudden you have a feeling of "What do I do now?"    

'I found it hard talking to close friends – I would've liked to have talked more. I had found some people I knew who allowed me to talk all the way through it and I found that extremely useful.'

Kenneth describes his life after James' passing as extremely difficult. He found walking on the seafront to be therapeutic and would then go home to concentrate on sorting out James' things.

Eventually, he felt motivated to meet new people and came across a local group for lesbian, gay, bisexual and transgender (LGBT) people aged over 50.

'One day I was sitting in the lounge and thought I’m fed up of looking at these walls, I need to do something. I went online and found Eastbourne Rainbow.'

Having started going to the group, he became more involved in its running.

'The facilitator decided he didn’t want to do it anymore, and another member, Derek, decided he would like me to take it on with him.'

Helping others

Today Kenneth is kept very busy with Eastbourne Rainbow, which had 25 members at its last meeting and runs a monthly coffee morning.

He says,

'I enjoy going along and talking to people. It has certainly given me a new lease of life. I couldn’t have sat at home and looked at the wall anymore. It is better to get out and try to help someone else – that way you get over your own problems and troubles.'

Kenneth is hoping to start a befriending service in the local community for older LGBT people.

'There are an awful lot of lonely people out there. I am currently looking for volunteers to work with.'

See our factsheets What is dementia with Lewy bodies (DLB)? (403) and Rarer causes of dementia (442), or to request copies call 01628 529240 or email alzheimers@xcalibrefs.co.uk

For more information about Eastbourne Rainbow see their website or call 07516 670654.

Age of Diversity has information for older LGBT people across the UK, see their website or write to Age of Diversity, c/o London Friend, 86 Caledonian Road, London N1 9DN.

Become a member to receive each issue of the magazine.