The journey to diagnosis itself can be difficult, and the diagnosis opens the door on a complex and unknown world.
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.
At first, the couple coped fairly well. But over time, Janine told HelloCare that Simon gradually lost his ability to perform daily tasks. He lost his way while out in the car one day and forgot how to open the petrol tank, so he decided to give up driving. He lost the ability to play cards. Even making a cup of tea became difficult.
The drift in the relationship from Janine being wife to carer had begun.
Initially, Simon began to ask Janine what he should wear. Then he forgot where the bathroom was. Over time, Janine was performing most of Simon’s personal care, such as showering and toileting.
With Janine performing these essential personal hygiene tasks, it became difficult for the 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,” she said.
“He started seeing mum as only his carer,” Sarah told HelloCare.
Janine said she and Simon remained affectionate “right up until the end … but it was a different relationship. I was a mum again.”
Eventually, Simon began to question Janine when she went to get into bed with him.
“There was a lot of unintentional hurt,” said Sarah.
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.
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.
Nighttime can be particularly challenging for spouse carers, Colin added.
“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 come in and visit every day and act like nervous Nellies,” he said.
“They’ve got to be able to let go, and a lot of them can’t do that.”
Colin recalled a spouse who followed the bus that took her husband from the respite facility to their community social bingo.
It’s also important to get good medical advice as some medication can relieve dementia symptoms early on and slow its progression, Colin noted.
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.
“The more you can talk about it the better. You get skills,” advised Colin.
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.
“Although we can’t meet at the moment because of the lockdown, it’s been wonderful. We’re very close as a group, we have a great rapport.”
“Until you’re really in that situation, you do not understand just how hard it is.”
Janine also observed that when Simon found the group, he was more willing to accept help.
Unfortunately, Barbara believes funding for the group might be cut in the future.
“That would be a disaster for so many people,” she said. “It plays such an important role in the community.”
From hospital to residential care
Eventually, Simon’s dementia worsened. He constantly wanted to leave the house, at times becoming desperate to get out. He became violent, not to other people, but to objects around the house. He tried to break the door down, Sarah shared.
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.
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,” explained Janine.
“All we can do is accept what we did. We did it because we loved him. You’re dealing with what you have at the time, it’s very hard.”
*Names have been changed.