Life Health & Wellbeing

Sunday 18 August 2019

'People avoid you rather than speak to you about it' - The loneliness of a dementia diagnosis

David and Mary Bateman pictured at their Rathfarnham home last night.
David and Mary Bateman pictured at their Rathfarnham home last night.
Geraldine Gittens

Geraldine Gittens

'I knew there was something wrong, but I couldn't pinpoint it."

Around four years ago, David Bateman's wife started to behave in ways that were strange for her character. She stopped reading books and seemed to lose interest in TV soaps. She had always enjoyed Irish fiction writers like the late Maeve Binchy and following stories on the small screen. She also stopped venturing out into the garden of their Rathfarnham home, and the bright display of plants she'd taken pleasure in disappeared.

Even more unusually, Mary (60) was also making mistakes in work. A competent bookkeeper all her life, this was causing her distress.

"She was very good at it, and she was starting to make mistakes," David explains. "And she lost all interest in housekeeping. Even making the dinner, she couldn't remember how to do it, and she lost interest."

Life was busy for the couple. Mary was caring for her elderly mother as well as working full-time, and David attributed these changes in Mary to fatigue. But at his mother's funeral, David's own family noticed too that Mary wasn't herself. Two of his sisters, who both have experience or knowledge of dementia, were concerned.

"They said it to me the next day, 'There's something wrong with Mary, you have to get her assessed.' My sister teaches in nursing in Australia, and my other sister works with people with dementia in Tallaght."

Last year, Mary was diagnosed with frontal lobe dementia. People living with this form of dementia typically show an inability to concentrate, an inability to plan, and may use the wrong object for the wrong task, or at the wrong time.

Simple tasks, David agrees, are difficult for Mary. She can't read the clock, and every day things like buttering bread or pouring milk over cereal are also an issue.

"She'd have the knife and the toast in her hands, and the butter would be beside her, but she wouldn't know what to do then. Or if she was having cereal and the cereal was in the bowl and the milk was beside her, she'd be looking at the milk because she wouldn't know what to do."

David adds: "Sometimes she can't remember what she was supposed to do that day, like hoovering. She'd ring me in work and say, 'Oh what was I supposed to do?'"

However, recalling people's names isn't a problem for Mary, and she has passed her driving assessments.

"Sometimes she's good. It's the simple things that she can't do - she can't go shopping on her own. I think she's afraid she'll walk out without paying."

"She just couldn't make a decision; if she was in the shop to get something, she'd be looking at two things and she'd just say, 'Forget about it, I don't want it' because she wouldn't be able to make a decision."

Now that the couple are in their 60s, David, who works in the motor trade, says Mary's diagnosis has changed their plans for retirement. Travel may no longer be an option.

"I was hoping to retire in a few years. I always thought we'd retire, and that over winter each year, we'd be a couple of months in Spain or Portugal. When she's out of her comfort zone, she doesn't know where she is. Travelling would be hard if she doesn't know where she is."

"I had to come to terms with it. You know it's not going to happen, you're not going to be travelling, you're not going to be jumping on a plane to a holiday in Spain."

Social isolation is a risk factor for people who are living with dementia, and this can compound the sense of loneliness and fear that a person might have around their future. While Mary's mornings are active, alternating between the gym, a visit from a carer - and a visit to Bloomfield social club in Rathfarnham, which is run by the Alzheimer Society of Ireland - she misses the life that she had before.

"She gets very emotional sometimes; she misses her friends and that sort of thing. People avoid you rather than speak to you about it... They just try and avoid you. She finds that very hard."

"She breaks down, and there would be a lot of crying. Then, some days, she's in great form."

"She might get up during the night and she'd get upset, and she'd come downstairs and sit, and then she'd come back to bed, and I'd ask her if she was okay and she'd say, 'Ah, just a bad time.' I think she's very fearful for her future."

"I never really talk to her about [the future]. She'd say 'How am I doing?' I always say 'You're doing fine.' I never say it's going to get worse. But she is actually better than she was; she can cook a dinner and she enjoys doing that; and sometimes she'll get up and clean the house from top to bottom."

The couple's rescue dog Leo, who is a terrier cross, has thrown her a lifeline. Leo will guide her home if she ever loses a sense of her surroundings on their walks in Bushy Park, and he also keeps her company while David is at work.

"For company, I said to myself we'll get a dog," David says. "We went up to the DSPCA and spotted this dog, and it's worked out perfectly. She really enjoys his company. Sometimes I might come in, and her and the dog would be here asleep on the couch."

"The first couple of times Mary went to the park, she was nervous. But after the first few times, the dog will actually drag her home. He'll be on the lead, I've seen it myself, he knows which way to go - once he reaches a certain gate in the park, he knows he's headed for home and he'll lead the way."

Last weekend at Bloom festival in Phoenix Park, a 1950s-themed garden, 'Memories are Made of This' was created by award-winning designer, Robert Moore, for the HSE's Dementia: Understand Together campaign.

Mary and David and members of the Bloomfield social club were involved in the design consultation stages. The aim of the garden was to create a positive and enjoyable experience for people with dementia by rekindling fond memories.

For tips on stimulating reminiscence in your garden, visit understandtogether.ie/bloom

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