“We cannot change the outcome, but we can affect the journey,” US hospice volunteer and author Ann Richardson.
No quote better illustrates the work provided by Home Instead CAREGivers when they attend to clients on their end-of-life journey. At a time of high emotion for families and often anxiety and pain for the client, Home Instead CAREGivers are there to provide calming reassurance while tending to the practical needs of the person who is dying.
Making A Difference at the End
Providing palliative care requires people who are truly interested in making a difference during the journey and at the end of life, says Home Instead CAREGiver Judy Norman.
Having worked in aged care for the past 20 years, this highly experienced CAREGiver knows how to best approach a palliative care client and his or her family and is able to adapt that approach as needed.
“Knowing that you’re another person who’s going to be there on their next journey, that you’re going to be there for them at their final stages of life is quite a responsibility,” Judy says.
“When you’re there caring for them, they are not so scared. Sometimes I’m holding their hand when they pass and that is a privilege. I try to remember that they are going to a better life and they are going to be out of pain.”
It’s a similar approach for Home Instead CAREGiver Sharne Dutton, who completed a palliative care course in 2015 and has been present when many of her palliative clients have passed.
She tells the story of a client with cancer who passed away on her very first service.
“I knew what was going on as soon as I arrived so I was able to get the whole family around him. I was so pleased to be able to do that for him,” Sharne says.
“I guess because I am a country person, death is just a part of life, so it doesn’t really faze me.”
Being There for the Family
Supporting the family of a palliative client is just as important as being there for the client. Reactions to impending death are as varied as the reasons behind the situation. Some family members want to be present throughout the end-of-life journey and their loved one’s passing, while for others, it is too difficult to watch their loved one’s decline and they cannot be present.
Home Instead CAREGiver Donna Watling says being there for the family is an important, but often the saddest, part of her role.
“I provide comfort to the families. I’m someone to talk to. Sometimes it can be as simple as making the family member a coffee while they sit with their loved one. I’m there to make sure they are coping as much as possible.”
Donna tells the story of a much-loved client of hers, who’d had a stroke and couldn’t talk. However, he was able to sing and would sing Amazing Grace “so beautifully”. His daughter arrived late one night, saying she just sensed she needed to see her dad.
“I went out to leave them alone and she came out a little while later and said ‘Dad’s gone’. We cried together and it was just heartbreaking.”
Sharne says sometimes the family wants to talk and sometimes they don’t even want to acknowledge the situation.
“I had one client whose family did not want death mentioned or acknowledged. The client wanted to talk about it though and he wanted to acknowledge it,” she says.
“It was tricky because it was important to respect the wishes of both parties. I did talk to the client about death – he needed to talk because he was so worried about what was going to happen with his wife because the family wouldn’t discuss it. But death was never mentioned around the family.”
What does palliative care involve?
Palliative care is provided to help people live as fully and as comfortably as possible with a life-limiting or terminal illness. It aims to ease the suffering of patients and their families.
Palliative care involves physical care, emotional, spiritual and psychological support, social care, bringing families together to discuss sensitive issues, support to meet cultural obligations, and counselling and grief support.
Home Instead CAREGivers work alongside medical and allied health practitioners to provide the practical aspects of palliative care as well as emotional support to their clients and their families.
A Home Instead palliative care service can include tasks such as bed baths, applying cream, providing massages, changing continence pads, helping clients to eat, providing mouth care, turning clients in bed, changing their sheets, and providing respite to the family.
“Each situation is different and has to be assessed and it also has to be able to adapt quickly. Touch is very important for the person who is dying as well,” Sharne says.
The impact of the role
Of course, the role can take its toll on those providing the care. Donna, who has now cared for about 60 palliative clients during her career, says she cried for two weeks when her first palliative client died.
“It was devastating. For me, it’s important to attend the funeral because then I get some peace of mind,” she says.
“It’s an opportunity to say goodbye and to have that closure, to know that I have done my job and done it well.”
Sharne agrees about the importance of attending a client’s funeral.
“Funerals are great for closure – not just for the family, but also for the CAREGivers. It’s closure for everybody.”
Home Instead Palliative Care Services
Home Instead is a specialist provider of high quality, relationship-based, in-home care for older New Zealanders. In our experience, New Zealanders undergoing palliative care want to live in the comfort of their own homes. Our trained CAREGivers can support their care needs, developing a home hospice or palliative care plan suited to each individual’s needs and preferences. We take personal responsibility for providing the best in-home care and support to meet our clients’ needs and are committed to addressing the individual and national challenges of New Zealand’s ageing population. Learn more here about our palliative care services.