Caring for a loved one with dementia

Every day, Peter Chin, CNZM, heads 200 metres down the road to the residential care home where his wife Noleen, who has dementia, now lives.

It’s a commitment which has never faltered since the disease was diagnosed.

Noleen and Peter Chin

The former two term Dunedin mayor, and recently appointed SuperSeniors Champion, chosen as an advocate for positive ageing, first became aware something was wrong during an official trip to Edinburgh in 2006.

Noleen had gone shopping and he was at meetings and hosting a function when he realised his wife hadn’t returned to the hotel.

Some long hours followed.

“I reported it to the police and the next few hours I lived through a living hell of just not knowing where she was,” he said.

“I couldn’t do anything except wait and the police were very good – they had an all points call out to bus drivers, taxi drivers, everybody.”

Edinburgh was in 24-hour party mode due to the festival and it wasn’t until about 4:30 am that a taxi driver found her.

“Here was this Chinese woman in a red jacket, black trousers roaming around for probably about 14 hours, just aimlessly,” says Peter.

The ups and the downs

When they got back to Dunedin, tests were done and it became clear it was dementia.

For several years, while Peter was still Mayor, Noleen was able to live at home and a carer would come in during the day.

It wasn’t easy as the ups and downs of public office couldn’t be shared.

“There are some lovely moments that become intensely personal – they’re not anything anybody might necessarily think of as great but they’re meaningful to you for all sorts of personal reasons,” he says.

“Not being able to share those moments – that was a bit [sad].

“Noleen couldn’t enjoy the lovely times and she certainly couldn’t be with me the times when… you’re not always liked as the Mayor.”

In 2012, the carer shifted away from Dunedin and a tough decision had to be made.

“The hospital had already told me Noleen was level 6 which was the highest dependency rating in terms of dementia, and getting 24/7 care was really the appropriate way to go,” says Peter.

The family placed Noleen in care and Peter heads to visit her most days.

“I take her out for lunch or afternoon tea. It’s very much so long as she is still able to go out and I can cope, then I do that.”

He says it’s important people with dementia can still be part of public life.

“Until very recently, I used to take her to concerts because we’ve always gone to concerts in the good old days and she sits there and listens.

“I stopped because every now and then she’d yawn, and she’d always choose the quietest part of the concert - she actually realised she shouldn’t be doing it because then she’d giggle.”

Recognition not there

The extended Chin family

The extended Chin clan on holiday

Noleen has Frontotemporal dementis and is placid but no longer recognises her husband or members of her family.

“She’s comfortable with me probably from the point of view that it’s that silly old bugger who comes around every day and pesters hell out of her to try and get her to speak and to react,” says Peter.

“I can see just over the last few months she’s starting to deteriorate and not react.

“There’s no emotion, there’s no real reaction although you can take her by the hand and she’ll go with you.”

Their children are no longer living in Dunedin so keep in contact via Facetime.

“They can see her but she ignores them completely,” he says.

“They try to talk to her but at least they can see she is keeping well and is well looked after and well fed. Noleen doesn’t really want for anything, which is good.”

The couple has been married for 52 years and Peter describes the first 40 as wonderful.

“It’s not the way I would have planned my senior years but you’ve just got to make do and that’s the deck of cards you’ve been dealt, and that’s what you’ve got to play.

“Coping with a partner who is not well.. is really the lot for many of us in the future.

“You’re not both going to have the same quality of life and quality of health.

“Inevitably, one or other is going to become more frail for whatever reason than the other, and it’s how you cope then as a couple.”

In 2011, just over 48,000 New Zealanders had dementia, according to the Ministry of Health which estimates that figure will climb to more than 78,000 by 2026.

Tips for Carers

  • Plan for regular short breaks 
  • Take a look at the Time Out respite planning guide at Carers NZ to help you
  • Find a relief carer using the online carer matching service, My Care
  • Have a plan in place for emergencies - you can download a template at Carers NZ
  • Request flexible working arrangements to help you balance caring and working roles
  • Find out if you’re eligible for financial assistance – contact Work and Income 0800 559 009
  • Connect with carers in your community – find local support groups through Carers NZ 0800 777 797
  • If you’re feeling overwhelmed, talk to your family, whānau, aiga and friends
  • Consider who can help you with your caring role. Alternatively, contact Carers NZ
  • Make self-care a priority – your own safety and well-being is important too.

Resources

If you are an unpaid carer looking after a loved one, 'A Guide for Carers', has been updated by Carers NZ.

It’s available free from the Ministry of Social Development’s website:

www.msd.govt.nz/what-we-can-do/community/carers/

You can also get it in hard copy from Work & Income, Citizen’s Advice Bureau and Grey Power offices.