Lewy body dementia: ‘We were nearly getting a ghost hunter out’

When beauty entrepreneur Ellen Kavanagh’s mother started seeing a person in her home who wasn’t there, the family didn’t know what to think.

“She was as clear as crystal that this person was there. It was very upsetting. It was her truth.”

When they tried to tell their very independent mother Kathleen, known as Kit, that nobody was there, “it didn’t land well with her”, says Ellen.

It took many months to get her into Beaumont Hospital in Dublin for tests, after which they were told she had a form of dementia for which hallucinations are a common feature. “We had never heard of Lewy body dementia – we were nearly getting a ghost hunter out,” says Ellen. But the biggest thing that day in 2018 when the diagnosis was explained to them was the consultant telling 80-year-old Kit that she could no longer drive her car. “It really broke her heart because she was so independent.”

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The family moved the car away from Kit’s home in Sutton immediately so any temptation was gone.

Ellen’s father, who died in 1996 when she was 16, had been diagnosed with multiple sclerosis the year she was born, “so I grew up in a carer’s house for want of a better word”.

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On being told her mother had dementia, she was quite prepared to have Kit move in with her and her husband, Conrad Jones, and their son Cooper. But the specialist warned that they were facing into a very different carer situation “from what we knew or what we were confident in”.

Kit remained capable in many practical ways for quite a while and they got a home help through the care team in Beaumont for a couple of hours a day. “For the most part, everything seemed as normal, with us adjusting to newer things the dementia was presenting with, her memory or how her reality was,” says Ellen. She is the youngest of four, with one sister living in Dublin and two brothers abroad, in Australia and Florida.

When Covid struck in early 2020, she and Conrad decided to bring her mother to live with them as everything was so uncertain. But they quickly realised that independent living was over for Kit.

“I was very nervous about anything happening to Mum under our roof with Covid. It was so scary. We knew she had to go into a nursing home to get full-time care. She needed care through the night when she would be up at three and four in the morning, ready to go.”

Although finding a suitable nursing home meant they could feel Kit was “totally cocooned and really safe”, it is also very hard to pass over the care of a parent to others.

“You want to be able to care for them and mind them the way they did when you were a child. But ultimately sometimes the care [needed] is more specialised than you can give. You want them to be happy and safe and sometimes handing over that care is the only way you can give that to your parents.”

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Kit, who was always very easygoing, settled quickly in her new home. “We knew if she had been able to make that decision she would have said ‘of course, just send me off’.”

Over three years in the nursing home, while Kit didn’t know Ellen all the time, she recognised Cooper right up to the end. “Her eyes lit up for Cooper. You can always see that glimmer there of the person that you already knew.”

Kit’s death on June 27th this year brought her family to a new phase of grief that had started from the day of diagnosis. “You are not grieving for the person who was there for the last five years in her case. You are grieving the mum who was there for the last 40 years.”

Dementia brings a “gruelling grieving process”, she explains. “It’s on and off for so long because it’s different milestones and changes you are grieving. You are grieving that they have to leave their home, or that they have to get help in, or that they are confused. You grieve every single change. The person is slipping into a different space within themselves. It does tend to be so prolonged.”

Nobody can predict the exact course an individual’s dementia will take, but there is no remission. “You can have good days and bad days, but you are stuck in this limbo,” says Ellen, who found it difficult to discuss with others, although close friends and colleagues at her Waxperts business were aware.

“I am not sure why,” she says now of her reticence. “I think when I would try, it would get very upsetting.” There is also a desire to protect the privacy of a loved one. “You just feel they are so exposed. They have lost a part of themselves that they can’t control.”

She was very grateful to be able to turn to the national helpline (1800 341 341) run by the Alzheimer Society of Ireland to unload. To be able to pick up the phone during Covid and “have somebody so confident of what they were able to advise, and to empathise with you, was amazing”. This year Ellen is an ambassador for the charity’s Alzheimer’s Memory Walk, which takes place in over 30 locations around Ireland on Sunday, September 24th.

Carers can be quite isolated in taking on all the pressures of dementia because it is not a health condition with a predictable trajectory that involves regular appointments with a care team, she points out. “It is very unknown all the time, which is a hard place to exist in.”