The dementia ward, where people grieve the living

Updated

Just hours after Val Caulfield placed her husband Roy into an aged care facility, tradesmen found him walking on a busy highway six kilometres away. She now insists on waiting until she finds a place that she can trust with her husband's life.



"You adjust the rules for the mood," Val says as she deals their last hand of Uno before lunch.

"Have you got a blue? What about a seven?" she asks Roy patiently.

Sometimes you lose track of time in here. Val

There are 11 people sitting in the communal dining room but it's strangely silent, except for the distant clatter coming from the kitchen.

This is the secure geriatric evaluation and management (GEM) ward at Sunshine Hospital, located in Melbourne's western suburbs.

Almost all of the people here have advanced dementia.

Roy has been here for eight weeks, and Val has been up to visit every day except one.

"Sometimes you lose track of time in here," she says.

A former truck driver of 38 years, the 82-year-old has a doting dependence on his wife that is both heartwarming and heartbreaking to witness.

As Val gets up to heat up her own soup, his eyes dart around as though he's a lost little boy.

"Where's she going?" he says panicked as she disappears into the kitchen.

Like many of the other patients in the ward, Roy's dementia has reached the point where his family can no longer care for him at home.

The waiting room

Many of the patients have been admitted to hospital but need a higher level of care than can be provided on the standard ward.

This is a transitional ward.

Patients stay here until their families or friends can find a suitable care option.

All the while they're grieving the loss of their loved one, someone who is standing right in front of them.

I wasn't going to leave him with anybody else that didn't love him and look after him like we did. Val

After 62 years of marriage, Val's decision to relinquish Roy's care was a difficult one.

It was made even more challenging after he went missing from a local facility within an hour of being placed into respite care.

When tradesmen found him walking on the freeway towards Geelong, he told them that he needed help with his truck.

"I was horrified," Val says.

In addition, their daughter Leanne received several calls in the middle of the night from staff saying they weren't able to settle Roy.

This prompted Val's quest to find somewhere in the region that she felt confident could adequately care for her husband.

"It's very hard for me to let go," she says.

"I wasn't going to hand him over to just anyone.

"I wasn't going to leave him with anybody else that didn't love him and look after him like we did."

Dementia's 'biggest enemy'

While security was one of the key considerations, Val was also unwilling to sacrifice his quality of life.

Roy is currently on a waiting list for a place 20 minutes away from their home; a facility Val found to be clean, friendly and that valued stimulation.

"It took a long time for me to even think, 'well, that's a place good enough for Roy'," she says.

"[The staff] are under pressure.

"They need more colour, a lot more facilities that they can relate to.

"They need to get used to the same staff, and get to recognise the faces.

"They also need a lot more occupational therapists and not be taking the nurses away from their medical duties to just sit and stimulate.

"I find boredom is one of the biggest enemies of people with dementia. They have to be stimulated, and this is why I like to come here, and try and keep Roy a little bit stimulated."

In the meantime Val says she can relax knowing that Roy is in the hands of hospital staff who are specialised in handling complex behaviours that come with different types of dementia.

Roy, who is usually placid, can get terribly distressed.

He can also become aggressive, a common symptom of dementia and one of the major challenges that the ward's nurses face.

"The main skill is not to agitate them any more," clinical coordinator Jackie Taugofie says.

For some, she says, it's about giving them a sense of purpose, and for others it can be something relatively simple that helps calm them.

"Sometimes a doll or a teddy bear is their comfort," she says.

"We once had a former matron who always wanted to come into the nurses' station and look at the patients' notes, so we gave her her own clipboard.

"Arguing with them is not actually helping them. We tend to agree with what they say, we follow what they're thinking and just keep them away from danger, and work them that way."

'It's like Pentridge in here'

One woman in the ward is known to hit and push other patients if they try to come into the common living area.

"Everybody out, this is my house," she yells as she closes the doors.

Dorothy wants to go in there to watch her favourite show, The Bold and The Beautiful.

"I won't go in there if she's in there," she says.

"It's like Pentridge in here," Dorothy, 88, whispers.

"It's like a cage, you can't get out."

One of the other common symptoms in the ward is paranoia, and that only gets worse as the day goes on.

Dorothy believes the Government has brought her in here.

"Everyone else in here is here because of mental reasons," she whispers as she points to her head.

"But I'm only in here because I fractured my ribs, and they won't let me out.

"Don't let them see me talking to you because I'll get into trouble."

Grief and guilt

Shortly after, her son Colin arrives on his way home from work.

One of the first things she asks is when he's going to get her out of here.

"I'm trying Mum," he says.

Up until recently Colin had never thought about putting his mother into care.

He had always thought that one day she would just pass away in her sleep.

But after Dorothy tripped and broke a couple of ribs, he knew she wasn't able to go home by herself.

He's spent the last few weeks visiting nearby facilities, putting her name down onto waiting lists and filling out the complex forms.

He will have to sell her home to come up with the bond, and give up the dog she loves more than anything.

Colin is riddled with guilt.

"I just feel guilty," he says, as his voice breaks and he tries to fight back tears.

"But I'm doing the best for her. I don't want to go around and find her on the floor, or that she's burnt the house down.

"Seeing her go the way she is, it's hard, it's just like I'm losing my Mum."

By 2050, it is estimated 1 million people will be living with dementia in Australia.

That means there'll be millions of Australian family members demanding quality alternatives that they can trust with their loved ones' final years.

Topics: aged-care, alzheimers-and-dementia, grief, sunshine-3020, melbourne-3000

First posted