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Living with dementia: carers’ experiences in their own words

Professional actors bring carers' voices to the stage, providing education about dementia. Photo: Sue Daley.

Palliative care nurse consultant James Daley has interviewed carers of people with dementia and hired actors to bring their stories to the stage. Below are edited highlights from the script, which is being presented in an educational tour across Central West NSW this week.

Mr Daley says he found carers through residential aged care facilities in Bathurst. Facility managers were keen to support the project in order to improve understanding of dementia.

“Managers feel that when families bring people with dementia to nursing homes, they don’t understand that it is a terminal illness,” he says.

“It’s the second biggest killer in the country, but when people get the diagnosis they don’t realise they are going to die from this.

“It makes it more difficult for people working in nursing homes to instigate the palliative approach.”

The following first-person accounts are reproduced with carers’ permission. They have been condensed and edited for clarity.

It made me question myself

Over about six years I saw a steady decline in [my husband’s] ability and a change in his personality. He used to be such a sociable person, but he gradually just lost interest in mixing. He didn’t want to play sport and I just couldn’t work it out.

I used to come home and say “We have to go to such and such tonight” and he’d say “You didn’t tell me”. I would say “I’m sure you I told you!”.

Anyway, I went into work and said “Hey girls, do I ever forget things or repeat myself?” and the answer was “God, you never forget anything”.

I didn’t think we had a major problem, but it was becoming more and more frequent. Then I started to notice that he was repeating himself a lot.

Anyway, I started to write things down; stuff that we spoke about, plans we made. I wrote things like “I told Bob that we are going out for dinner on Friday night” or whatever the story was and he just wouldn’t remember.

Then I rang the architect he worked with, because they were good mates, and I said, “Is Bob having problems with his memory?”. He said, “Oh yes Mary, I was debating whether to tell you or not. He will come in and ask for a report on something and five minutes later will come in and ask for the same report. We have been covering for him for a while now”.

I said, “I wish you would have told me”.

Bob retired soon after and all the doctor said was that he had some short term memory loss: “No big deal, happens to everyone.” But it was more than just memory loss.

Something isn’t right

My wife was in her mid-fifties when we first noticed she was changing and from the start, we had difficulties getting a diagnosis. I took her to a specialist in Sydney. You know, I think he was odd himself.

He said “There is nothing wrong with her. As we get older we all forget things”, but we knew it was worse than that.

Her behaviour was all wrong. She accused me of hiding her clothes and her jewellery, but she was putting it inside toilet paper cardboard rolls. She was putting a bit of toilet paper on either side to hide it and then would put it a cupboard.

Difficulty getting a diagnosis and understanding it

After about two years of inconclusive tests, finally, I was told by a specialist in Sydney that [my husband] had dementia. He said the sooner I accepted the fact the better, that acceptance was a journey, but he didn’t really tell me what dementia is; just that I had to accept it.

People tend to only think of memory loss with dementia and not of the all the other cognitive and behavioural changes that can also happen, like confusion, personality changes, aggression, apathy, social disinhibition, lack of cleanliness. People think that it’s just all memory, memory, memory. But I now know that it’s different for everyone. The person you know disappears in front of your eyes sometimes, slowly and sometimes quickly. But they go.

Understanding it’s a disease helps

Once the diagnosis was made nothing much changed. We didn’t get more help, but at least you start to understand that it’s an illness a disease. You stop blaming the person, expecting it to change, expecting it to get better.

Isolation and judgement

I have people who won’t talk to me because I have put [my husband] in care. You get comments like, “Oh my wife’s is unwell, but, you know, it’s until death we part”.

I just walk away. But they are kind of insensitive. They don’t know what it’s like day in, day out.

They say that things are better in small communities; people stick together. Yet nobody has volunteered to come and help. It might be different in the city.

I try to explain to people how dementia can be different to cancer. Cancer is cruel but people know what’s happening to them. A person doesn’t come back from dementia to tell you how it was. They don’t come back from dementia and say ‘I remember you being there’. They don’t remember you were there for them.

I think most people just don’t understand what dementia really means.

Please keep visiting

People seem to think ‘Oh we won’t visit because they have lost their memory’, but sometimes they haven’t. They might still recognise old friends, or still feel comfort from a familiar face. People think ‘They won’t know us’ or ‘They seem to be in their own little world’. They put this picture together without trying to understand, without asking people who know. It’s important to the carer that people still care.

People don’t realise he has dementia

About 12 months before [my husband] passed away, one morning he just couldn’t just couldn’t get out of bed.

I rang the ambulance and the ambulance officers couldn’t understand why he wasn’t telling them what was wrong. They didn’t understand that he had dementia. You see, he wasn’t old and that was confusing to many people. He didn’t look unwell. If he was 20 years older I think they would have understood it more.

We had a one disastrous week in hospital. It was an awful learning curve for me. I used to think that all hospital and medical people understood dementia, but now I know that most don’t.

I complained to the hospital and I’m glad to say that some things have changed. They need to listen to the carer. They are the experts; they live with the person day in, day out, and they know them. They know who they were.

It’s none of our business

I remember when we first put Dad into care it was such a hard decision. I still feel guilty when I think about it, even though it was the best thing for Dad.

After three days he decided he was going home and never told anybody. He just took off.

We found him later that night wandering in town, so he had to go into the dementia wing of the nursing home. It just wasn’t safe for him to be unsupervised. He needed to be watched all the time.

Once he went into the dementia wing I felt relieved because I knew I didn’t have to worry about him wandering out on the street, or getting run over or lost.

I knew he was beginning to wander, but I didn’t realise how much a problem it was because I wasn’t living with him. We found out later from people that he had been wandering at night for a long time. So people knew. The neighbours knew, but they didn’t say anything because they didn’t want to interfere or get involved. Someone said it wasn’t their business.

We were lucky he never got hurt.

Confused in the car

[My wife] came home one day, stopped the car in the driveway and started screaming because she couldn’t get out of the car. The next-door neighbour came running over and opened the car door. She didn’t know how to get out of the car. She felt trapped, panicked. I knew she could never drive again.

I took her licence away. I just didn’t allow her to drive. I took the keys from her – it was too dangerous.

On call and sleep deprived

I don’t think I really ever saw [my husband] sleep. He’d have the occasional nap for a few minutes. They say you can’t live without sleep, but it didn’t seem to bother him. The lack of sleep, for me, was the worst thing. Trying to keep him occupied all the time was so hard.

I couldn’t let him out of my sight for a minute. Even walking down the street was hard. He would just stop people and start chatting to them. He didn’t know who they were, but he would just stop them and greet them and shake their hands like old friends.

If I turned my back on him for a second he would be gone. He was so quick and so fit. He’d be into a shop, down the road, into the bank, gone. It just wasn’t safe. No matter what I did, I just couldn’t keep up with him. I couldn’t watch him 24 hours a day, seven days a week.

Always dressed and ready to go

I couldn’t get [my husband] out of his clothes. He wouldn’t let me change him. It was sometimes five days before I could get him into the shower.

He would go to bed with his wallet in his pocket and his belt on, but he did take his shoes off.

Anyway, I was going mad because I was only getting three hours of sleep a night. Once I fell asleep and woke to the telephone. It was the local hospital: “We have Bob here – he just turned up. He doesn’t know why he is here. We have checked him out he is ok. He’s well dressed.”

I went up and got him. I locked all the doors and windows and kept the keys under my pillow, but he still found ways of getting out.

She is now just a shell

My Mum, in essence, is gone. There is only a shell left.

I used to go in three or four times a week to the nursing home to see her with Dad. In the end, my doctor said to me, “Stop. It’s doing you harm. Every time you see her it just tears your heart out”.

Now she has been bed-ridden for almost three years and I know she is she is terrified because she doesn’t understand what’s going on. There are also problems with language because Mama doesn’t always understand English; it’s not her first language.

When she could no longer walk she was moved to another room. So now she just lays in her bed staring blindly into space, grinding her teeth.

The education tour was made possible by an Arts Health Grant and support from the Program of Experience in the Palliative Approach (PEPA NSW). The tour’s script was written by Mr Daley, Tasmanian geriatrician Dr Jane Tolman, and Blacktown Hospital palliative care clinician Dr Elspeth Correy. This is the second time Mr Daley has used actors and verbatim storytelling to bring stories to the stage.


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