health

'It's just going to get worse': the reality of caring for a partner with Alzheimer's.

By Dr Ranjana Srivastiva of Life Matters

When I visit the Raabes at their home, Edwin meets me at the door.

Patricia then emerges from inside the house and greets me warmly, taking my hand in hers.

She is every bit the gracious hostess, asking me if I had any problem finding my way, offering me a drink and leading me to the dining table.

Then she says, ‘Now what was I just going to say? I hate how I forget.’ And then, in response to another question, ‘it went away, it just went.’

I am reminded of her slowly worsening Alzheimer’s disease.

Pat tells me she’s ‘with it most of the time’.

“I feel I can remember past things and I still have enough in me that I haven’t got to go to that level… of care,” she said.

Ed, whose manner is calm and patient, says they are managing at the moment.

“It’s something you get used to. You’ve got to live with the sorts of problems that Patty’s got,” he said.

“She had to hand in her car license, she can’t drive a car anymore. She’s been taken off the electoral role… things like that. But apart from that it’s quite manageable at the moment.”

Throughout my time with her, I am struck by her lucidity about some things and her complete lack of memory about other things.

‘I don’t like dementia.’

The Raabes, both in their 70s, have been married for 53 years and have three adult children.

When she was younger, Pat was a busy working mum. As well as looking after her family, she managed a busy medico-legal psychiatrist’s practice and enjoyed her work. She also had an active social life and a wide circle of good friends.

But in 2012, Pat was diagnosed with Alzheimer’s disease. Since then the condition has progressed slowly and steadily.

“I don’t like dementia. It affects me remembering things. But I’m ‘with it’ a lot of the time,” she said.

“It also affects me being spaced out and not knowing anything for 12 hours or something, and that freaks me out. I don’t know who I am.”

She hates losing her memory and she hates the loss of control.

“I hate it when I don’t remember. I’m frightened of saying the wrong thing. I have always been so ‘with it’,” she said.

After spending time with Pat, I can picture her as a beautiful and vivacious woman who managed her domestic, work and social life so capably — and with a good deal of charm. I imagine her as the life of a party.

Now she hates going out. She used to go out to community activities with other people with dementia, but stopped after a while as she hated being reminded of her illness.

“I don’t join in anything anymore,” she said.

“I like him to go out and mix. I don’t go out anymore. I’ll go over to the shopping centre. I’ll go to family.”

Pat’s dementia has meant Ed has had to take on the role of carer. He spends much of his time doing chores around the house — pottering in the garden, preparing meals and caring for Pat.

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But he does still take part in the social activities in their village.

“We have got our own bowling green down here. So I go down and talk to the ladies.”

When I ask Ed if Pat’s needs confine him to the home, he says he doesn’t see it like this at all. He reflects that when you grow old together, your needs change and mutual understanding evolves.

Challenges of caring.

He describes waking up one night to find Pat in the backyard, unconscious with cuts to her head.

“She’d fallen over and cracked her head. So we brought her inside and I found bowls of ice cream with chocolate sauce on them — everywhere. Even in the back seat of the car,” he said.

Ed cleaned and dressed her wounds, but Pat didn’t remember a thing even when he showed her the pictures on his phone.

On another occasion, Ed was woken by a neighbour at three o’clock in the morning. Pat had wandered over to their house in the middle of the night.

“I was embarrassed. I had an old daggy nightie on instead of a lovely nightie… I was so embarrassed. They had to wrap me up in a rug,” Pat said.

Knowing what’s ahead.

Pat knows more about dementia than many of us. She saw her mother die with the condition.

While this has given her a better understanding of what’s happening to her, it’s also made her terrified of ending up in a nursing home.

“I have a terrible fear of going to a nursing home. It’s very frightening and it haunts me,” Pat said.

When Ed describes the kind of experience Pat’s mother had, it’s easy to understand where her fear comes from.

“The thing about the nursing home is that when Pat’s mum went into it, it was not a very good one in those days. You used to go there and all the ladies were sitting on potty chairs with no pants on. That’s what Pat does not want to happen,” he said.

Despite Pat’s fears, Ed cannot make any promises. One of the things all dementia carers are taught is never to promise a loved one that moving to a nursing home is out of the question. Conditions change — for example, the carer might become ill or the person with dementia may become too unwell or unsafe to manage at home.

For now, Ed says they can manage at home. Even though they both know things will get worse.

“All I can see is that it’s not going to get any better for me. It’s just going to get worse. It’s something I’m finding very hard to cope with because it keeps coming,” Pat said.

Joining Exit.

The pair have discussed euthanasia and Pat has sought advice about it.

“I don’t know what I am going to do… But I just can’t cope with the thought of going into a nursing home,” she said.

“When it gets bad. I want to do something. So I joined [voluntary euthanasia group] Exit.”

Ed supports his wife.

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“We’ve talked about it but it’s up to Pat,” he said.

“Seeing how Pat is going down and down and down. And knowing how her mother died with it, and she was virtually a vegetable when she went. She didn’t know anybody, and I know Pat doesn’t want to finish up like that.”

But not everyone in the family agrees.

“Our children don’t agree with it,” Pat said. “I told them I had joined Exit and they weren’t happy about it. They didn’t like anything to do with it… or me doing anything,” she said.

‘We still love each other.’

How has dementia changed their relationship?

Pat is quick to say that she feels sorry for her husband, who has to put up with her constantly foggy and irritating memory.

“I feel very sorry for Ed. Very very sorry for Ed and I hate being the way I am. Hate it. We still love each other anyway.”

But Ed said he doesn’t feel that way. For him, it’s part of growing old together and he is doing what’s right.

When Pat was first diagnosed, Ed took it upon himself to attend education sessions designed for those who care for dementia sufferers.

It must have been confronting to learn about what to expect but the ever-practical Ed wanted to be prepared. He gives credit to these sessions for having prepared him for all the changes ahead.

“We know the problem is there and we know eventually that it is going to turn all belly up and not be nice. But at the present moment things are going along OK,” Ed said.

Dr Srivastiva is an oncologist and author. This is the final feature in her series An illness in the family. You can also read the story of siblings Harry and Sophie Ryan and couple Desiree and Leslie Lobo.

This post originally appeared on ABC News.


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