Blurring the lines between spouse and carer – a dementia care story

It’s a common source of frustration and conflict as the spouse becomes both, despite there being paid help.

Key Points

  • Dementia patients can see the spouse as the only carer.
  • Important that carers look after themselves.
  • Accessing respite and support services is important.

A member of HelloCare’s Aged Care Worker Support Group recently reached out to members for advice for her mother who was caring for her husband living with dementia.

“How do you prevent the lines of spouse and carer from becoming blurred, and can you prevent it?” she asked the group.

Sarah’s father, Simon was diagnosed with dementia in 2017, and initially her mother Janine assured him she would care for him at home right until the end.

But over time, Simon gradually lost his ability to perform daily tasks. Even making a cup of tea became difficult.

The drift in the relationship from Janine being wife to carer had begun.

With Janine performing essential personal hygiene tasks, it became difficult for the paid carer to take over those jobs.

“It came to a point where dad didn’t let the carer help him. There was a person coming in to help him shower, but in the end, mum had to continue showering dad,” Sarah told HelloCare.

Simon started seeing Janine as only his carer.

Janine said she and Simon remained affectionate “right up until the end … but it was a different relationship. I was a mum again.”

Simon’s decline caused Janine to feel a profound sense of loss. For 55 years, she and Simon had been a strong partnership and they had always worked well together, making all decisions jointly.

Managing the transition

Colin McDonnell, Dementia and Wellbeing Consultant with Calvary Care, told HelloCare, “Often the spouse will take over so much of the day to day, they get burnout and in the worst case situation die before the person who is living with dementia.”

He continued, “that’s a common thing. It’s really important that carers look after themselves.”

McDonnell said it’s beneficial to get help in the home early, rather than waiting for a significant deterioration in the person’s condition.

Sarah agrees on this point, adding, “My best advice for people would be if you have a loved one at home and there is community care coming in, they should be encouraged to do more personal care for their client, rather than the spouse.”

Colin said it “happens often” that as the disease progresses, the spouse living with dementia begins not to recognise their partner and it mustn’t be taken personally.

“One of the first things that happens is that they can’t recognise faces, even in the early stage of dementia,” he said.

Night time can be particularly challenging for spouse carers.

“Night time is usually when people put their hands up and say, ‘Look, I can't do this anymore.’ That's usually what causes people to go into nursing homes.”

“The carer can’t get any sleep at night and they’re awake all day. It’s terrible,” Colin said.

“Sleep in different beds,” he recommended.

Respite or day care centres are also a “good idea” to give spouses “space” and “time on their own”.

However, Colin said some spouses find it difficult to leave their partner, even in respite care.

“They’ve got to be able to let go, and a lot of them can’t do that.”

It’s also important to get good medical advice as some medication can relieve dementia symptoms early on and slow its progression.

Getting educated about dementia care and joining support groups can also be an enormous help.

Education resources are available through Alzheimer’s Australia, Dementia Australia and Dementia Alliance International, and local support groups can provide emotional and educational support, too.

Finding the right support

Janine found a local support group for high functioning people living with dementia, which suited Simon, and found it incredibly helpful for her as well.

Simon made friends and loved going, and Janine met a network of carers who not only had a lot in common, but they could also share information and advice.

“I have a wonderful group of friends in the carers group,” said Janine.

When Simon found the group, he was more willing to accept help.

From hospital to residential care

Eventually, Simon’s dementia worsened. He became violent, not to other people, but to objects around the house.

It was at this point Janine and Sarah knew they needed more help, and Simon went to hospital, where he spent several weeks.

“He went into hospital walking, talking and continent, but went on medication and came out several weeks later bed-bound, incontinent and non verbal,” said Sarah.

Sadly, early this year, Simon passed away.

After caring for him every day for four years, Janine was diagnosed with ‘broken heart syndrome’ brought on by the stress of Simons’s death.

However, she hopes that by talking about her experience, some of the lessons she learned caring for her husband might help others.

As an aged care worker, Sarah said they get to walk away from the resident’s situations at the end of their shift.

“The family carers don’t get that grace, that respite,” she said.

“I’m still coming to terms with what I could have done better, or what we should have done.”

*Names have been changed.

Source: HelloCare