Family’s heartache of dad’s dementia: “There are no positives in this”

Jess with her dad on her 18th birthday in 2014.
Jess with her dad on her 18th birthday in 2014.

When Audrey Campbell from Limavady heard the official diagnosis that her husband William had dementia, it was merely confirmation of what she had suspected for the previous five years. 

The mum-of-two had known for years her husband, a veteran fire fighter of almost three decades, wasn’t himself. Dad to Lynne and Jess, William became withdrawn; his behaviour bizarre at home. He would put money in the bin, get confused easily and was unable to remember simple dates. 

William and Audrey at a wedding in 2011.

William and Audrey at a wedding in 2011.

At first, Audrey brushed it off but, as time went on and William’s behaviour grew increasingly strange, she knew there was something seriously wrong. 

“William suffered a major trauma at work and we thought initially it was depression but, as time went on, I knew it wasn’t depression. I had a friend who suffered depression and this was different. William was a real family man, but he withdrew from us as a family. There were a lot of things I noticed. He’d put things in the wrong cupboard, money in the bin, put his clothes on back to front, and get confused.” 

Audrey revealed her worries to her husband’s doctor. She had no other option. 

William was put through a series of tests and it was heart breaking for Audrey as she watched her husband struggle to tell the time on a clock, and do other simple child-like exercises. 

Lynne with dad William.

Lynne with dad William.

“William would look at me as if to say, ‘can you help me? but I couldn’t,” recalled Audrey. 

William was advised to stop driving, which he did without question. Still able to walk, William loved going for a walk around the roads in the country at home. 

“We would have to follow William, because we didn’t want him getting lost,” said Audrey. 

It was April 1, 2009 when the diagnosis of frontotemporal dementia was delivered. 

William was 49, Audrey was 44, and their daughters 16 and 12.

“It was awful, devastating to hear the diagnosis. I was hearing it, but hoping it was something else. I think William knew, but he took it on the chin and said nothing,” said Audrey.

Almost six years later, and Audrey “lives in William’s world”. 

Everyday decisions are based around William’s care, around dementia. William cannot walk or talk. There is nothing William can do or decide for himself. William would need full time nursing care but, as Audrey and William are not eligible for financial help with nursing home fees they would be left financially crippled, probably unable to keep their current house so, for that reason, Audrey had no option but to adapt their home so that William could stay with the family.

“It’s like having a baby, because he needs so much care. Somebody said to me, ‘Audrey, you’re like a prisoner in your own home’,” said Audrey. “William has no choices left. He hasn’t made a decision in years.”

The family have been through the anger stage of the diagnosis, but continue to face challenges regarding respite care for William. After spells with several facilities, the family is extremely grateful for Cornfield Care Centre, outside Limavady, where William is well settled. However, Audrey said a lack of services for William’s age is a major issue, and there are gaps in the service for early onset dementia. 

“All dementia centres are for over 65s,” said Audrey. 

William received day care in mental health places like Praxis, which Audrey said are great, but as William’s illness progressed she said the health authorities found it more difficult to place him. Even a specialised dementia centre couldn’t keep him as his disease progressed, she said.

“Doors just kept closing on us. The last place we wanted was a nursing home, but thankfully he’s been in Cornfield three days a week for two years and settled well. They have a lot of entertainment which stimulates him,” said Audrey.

Audrey said her husband’s diagnosis has been life changing, but they have found strength through close friends and an even stronger family, including Audrey’s mother, and her sister, Irene.

“Irene is William’s carer and she is like an angel on earth,” said Audrey. “She is very, very good.”

The family are grateful for assistance from the Foyle Alzheimer’s Society, with sitters able to relieve Irene three afternoons each week. 

“When William was diagnosed, I made the decision that the girls were not going to become carers. I didn’t want them to grow up saying ‘I can’t do that because...’I wanted them to be like girls their own age.” 

However, William’s illness meant Lynne and Jess have missed out on lots of things with their dad -  going through university without him, having no dad to teach them to drive or pick them up when they are out late, or start their cars on cold mornings, or clear the snow from the car. Their dad hasn’t been able to do basic things around the house, like cutting grass or fixing things for them, “all the things their friends can take for granted,” said Audrey.   

In sharing the family’s story, Audrey and her daughters hope to give comfort to others in similar situations. 

“It’s like a grieving process. You have a fair idea of what’s ahead of you in terms of the condition, but you have no idea of the impact on day-to-day life,” said Audrey.

The family hope to raise awareness - not just about dementia, but about the harsh reality of the impact on loved ones of sufferers. 

“You really miss the person. It’s lonely,” said Audrey. “I have amazing friends and they are so thoughtful, and we are surrounded by good people. I like to surround myself with positive people, people that make me laugh. I don’t want pity.”

Lynne, a nurse, said for others going through the same as her family, it’s important to always remember the person, and to never take anything or anyone for granted.

“There are no positives in this,” said Audrey. “Everything revolves around dementia.”

Audrey said in her work is where “I get to be Audrey”.

“I don’t go out to things that are more for couples. My job is my release. I laugh a lot at work and every day is different. When I come home, and walk through the door, nothing changes. It’s the same routine every day,” said Audrey, adding: “I thank God for my sense of humour. Without it I would be lost. I keep a smile on my face, not because I have to, but because I want to.”