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Dealing with the burden of a family illness

Published by HelloCare on July 22nd 2019

Receiving a diagnosis of a serious illness can be devastating. Obviously, for the person concerned there might be suffering, and uncertainty and fear about outcomes. For family, concern for their loved one, coupled with the prospect of taking on the responsibility of caring for them, can be extremely daunting. Unless family have medical experience, they may never have delivered the type of care required when someone is seriously ill.

They may have little to no knowledge of managing medications, they may not understand medical language, and they never have been in the role of ‘carer’. And yet, family may be expected to make themselves available to care around the clock.

For people with other responsibilities, such as a job or children to care for, or who themselves are older or not completely well, managing caring responsibility can be overwhelming. Organising and getting to doctor’s appointments and scans, lodging payments for refunds, administering medication, and other care responsibilities, can leave little time to ‘just be’ with a loved one, or simply to do the things you enjoy doing together, in what may be their final days.

Juggling the two very different roles of being a wife, daughter, or spouse, with the role of carer can take its toll – to the point that people feel they are not doing either role well. Hired care is often available in the home for those who need it, but the logistical challenges of overseeing the care still usually falls upon family.

The challenges when family provide care

One family found themselves in such a situation when the youngest of five sisters was diagnosed with breast cancer at the age of 30. With three young children, a busy husband, and chemotherapy treatment, her family kicked into overdrive to do their best to provide the help she needed.

One sister was doing the paperwork, another was taking care of Medicare claims. The other sisters were organising appointments, while the woman’s mother was looking after the children with the help of friends in the community. Her husband continued to go to work.

Simply coordinating all the tasks, on top of getting everything done, became overwhelming, and it didn’t take long before all the family were exhausted. One of the sisters was a friend of Kate Spurway, founder of NurseWatch, and the family approached her for help.

“Chasing doctors appointments and pathology reports, making sure you’ve got follow up appointments, keeping an eye on clinical signs after a bout of chemotherapy, and all the protocols with toileting following chemo, all these bits and pieces take time and expertise to organise,” Ms Spurway said.

NurseWatch is made up of a team of experienced registered nurses who were able to take over the heavy administrative requirements associated with caring for someone who was undergoing chemotherapy treatment, and all the tasks associated with her care. They even took over the children’s school pick-ups and drop-offs.

Having this level of support relieved the woman’s family of the responsibilities of caring, and enabled them to simply enjoy their time with their loved one, and concentrate on being present for her and her children.

Outsourcing end-of-life care in the home

End of life care is particularly challenging for family to manage for a loved one, both in terms of the physical and clinical aspects, but also, of course, emotionally. Palliative care is a specialisation in itself, and for loved ones is usually more than they can manage on their own unless they have medical experience.

A professional woman in her 70s, after returning to Australia after living abroad for much of her life, found herself in a challenging situation when she was diagnosed with a terminal illness.

The woman didn’t have children, and her remaining family, a brother and sister, both had busy professional careers and were elderly themselves. They weren’t able to provide the care the woman needed to remain living at home.

The woman had a clear idea of what she needed. She wanted quality care, with intelligent staff, who were able to do the critical thinking required to care for someone at the end of their life. She wanted to be able to have some control over the end of her life.

The woman approached Ms Spurway and asked her to ‘project manage’ her end-of-life care. “She was able to have the death she wanted”

Professional help can be necessary

NurseWatch’s experienced palliative care nurses were able to step in and provide the necessary care. They could pre-empt the woman’s clinical pathway because they understood the nature of her disease. The registered nurses were able to organise pharmacy scripts and equipment, take care of nursing needs, and organise the protocols of schedule eight drugs.

“Her brother and sister, who were both in their 70s, were relieved that we managed the care for them and they could enjoy being with her as a sister and connect with her, rather than running around.

“The responsibility was taken off them,” Ms Spurway said. "The family were also relieved because the woman was able to have the death she wanted." (Click here to book these services at NurseWatch)

Relieved from the burden of caring, you are free to just ‘be there’

We don’t often use language such as ‘project management’ around the delivery of care; it sounds business-like and clinical, when a softer approach is usually what is expected.

But there is a side of caring for someone who is seriously ill that requires hours and hours of work, often alone, and sometimes with little thanks. It can be highly skilled work and requires expertise and experience.

Of course, a compassionate and warm manner is also always expected. Putting care into the hands of professionals can not only ensure the best care possible is delivered, it also relieves family of the burden of caring, and gives them the opportunity simply to be with their loved one, and enjoy their time together in what may be their final days.

To find out more about NurseWatch,call (02) 9331 3344 or email admin@nursewatch.com.au.