In Home Hospice Care: providing dignity at a difficult time

Shortly after Jane* relocated to Mount Gambier with her husband David* and elderly mother, David was diagnosed with terminal cancer. Jane found herself juggling the responsibilities of caregiving for her ailing husband and dependent mother in an unfamiliar environment. With no local support system in place, she struggled to manage these new demands while looking after herself and maintaining a sense of normalcy.

She turned to volunteer-driven Community Grants recipient charity In Home Hospice Care (IHHCare) for much-needed support. The team carefully matched Jane and her husband with volunteers who shared common interests; enabling Jane to take breaks, run errands, and tend to her mum and her own wellbeing – without constantly worrying about her husband.

“We got on really well with the two volunteers allocated to us and having them visit meant I could go out shopping or do anything I had to do, without worrying about my partner,” says Jane. “Having them was quite motivating for my partner as well because there were a few times where I would tell him they were coming, and he would get up and out of bed. By that time, he was much weaker and wasn’t getting up very much.

“I have made lifelong friendships that have continued after the death of my husband. It was amazing; we had so much in common. Having the volunteers enabled me to spend time with my mum and access the community, so I have something for afterward.”

There’s no place like home

Being able to stay in the comfort of your own home at the end of life is a blessing and a privilege made possible by IHHCare’s services, which are provided free of charge.

“At home people’s mental health and wellbeing are better, they are happier, more relaxed,” says IHHCare Manager Sandi Elliott. “They feel comfortable, and they also might have pets at home they are very close to.

“In the hospital the environment is quite clinical, it can be noisy, people might not be able to visit you.”

Practical assistance and companionship

Tasks volunteers carry out are all governed by what the client needs to feel happier or enjoy life more under difficult circumstances. Volunteers look for ways to help them feel more normal while retaining their dignity and independence.

Sometimes this means doing a crossword together, visiting the seaside for fish and chips, or sitting in the garden on a nice day trimming rosebushes. Other times it’s accompanying people to medical or hairdressing appointments – people still want to look their best, and not surprisingly the volunteer who is an ex-hairdresser is in high demand!

“We have a lady with a son who used to drive her to do her once-weekly shop. But she felt pressure to stick to her list and finish up quickly,” Sandi relates. “Whereas our volunteer takes their time, they wander up and down the aisles together and go for a coffee afterwards.”

The service is as much a comfort to the client as it is to their primary carer. “We have clients with dementia where their carer is scared to leave them alone – but they are exhausted,” explains Sandi. “Our volunteer says, ‘you go and have a rest, read your book, shut the door, we are here’. Then you don’t have to worry about them wandering outside or touching things they shouldn’t or having a fall.”

Volunteers with heart

It takes a special type of person to volunteer with people facing the end of life. “Some of our volunteers say they’ve had a meaningful experience with a close friend or family member dying and they want others to have that,” Sandi explains. “Or the flip side is, they’ve seen some uncomfortable, unhappy experiences of people dying and they think no one deserves that. They want to make a difference.”

Volunteers have compassion, patience, and the ability to listen and not judge. “They become a safe person that the client can talk to,” says Sandi. “An ill person may want to talk about dying or their funeral, they might be angry and frustrated and upset, which then upsets their loved ones. Whereas the volunteer can listen with no judgement and not react emotionally to them.”

A snapshot of In Home Hospice Care’s client needs

People facing life-limiting illnesses, and their families and carers, approach IHHCare to fulfill a wide variety of needs. For example:

“Divorced and 63 years old, I found myself ineligible for aged care support when my health deteriorated due to cancer. My daughter lived over 1,200 kilometres away with a young family and could only offer limited assistance. While my brother did his best to juggle his family and work obligations, his efforts fell short of meeting my care needs. Despite my declining health, I am determined to hold on to the comfort of my own home for as long as possible. Help me to do this.”

“I am in my 80s. I had to move from a small rural town to Mount Gambier for regular medical care. I live alone, can no longer drive, and don’t know anyone in this community. My family is overseas and interstate, leaving me with no one close by. I have difficulty breathing and desperately need help with shopping, getting prescriptions, and going to medical appointments.”

“I need to have a minor surgical procedure 160km from home, requiring anaesthesia and an overnight stay. I’m deeply worried about leaving my husband alone, as he might fall while I’m away. The thought of undergoing anaesthesia and being away from home, knowing he’s on his own, is distressing. I can’t proceed with the surgery unless I know he’ll be safe.”

“Facing terminal illness with just two weeks left, I had to move into an aged care facility as my partner, also in poor health, could no longer care for me. The emotional toll on my partner has been immense, and I’m terrified he might commit suicide in his despair. Please help us.”

“I am in my early 50s. I left my job and home to move 500km to provide 24/7 care for my elderly mother. I’m desperate for just 30 minutes of free time twice a week to make phone calls and do some gardening.”

“I am in hospital and expected to die within the week. With my partner by my side, I realised I haven’t made a Will. I urgently need to get this sorted before I pass.”

About the Community Grants Program

Every year the Sisters of Charity Foundation provides grants to small not-for-profits across Australia, like In Home Hospice Care, that use clever ways to fight disadvantage, loneliness, suffering and oppression.

Learn more at Community Grants Program.

*Names have been changed for privacy reasons.