When the nurse becomes the carer, knowledge can be a two-edged sword
A blog post written by Sandra Bradley, Advance Care Directive Consultant, South Australia
[This blog is part of a series of blogs commissioned by ELDAC to support aged care health professionals and care providers in providing end of life care. You can find more information on the ELDAC website.]
My story is complicated by many factors, including COVID.
In February of 2020 my husband was diagnosed with inoperable pancreatic cancer. As a registered nurse and previous cancer research scientist, I had suspected for a long time that cancer might be involved but when we finally got the diagnosis in March, I broke down – because I knew what was ahead but my husband didn’t.
We told our family and friends so they could see my husband while he was still relatively healthy. At this point, people were still able to visit each other in South Australia with social distancing in place. His daughter (from a previous marriage) and her family live in Melbourne so when the borders in South Australia closed, unfortunately, it was too late for them to visit. They still have not seen him in person but instead talk to him online.
In April, we finally got a prognosis. The prognosis had been delayed because of additional cancer patients being moved from another hospital to our hospital due to COVID.
My husband, at his request, was told he had between 12 and 18 months to live. If he chose chemotherapy, it was possible the tumour could shrink enough to be removed and give him a few more months. I tried not to influence my husband’s choice. He opted to try chemotherapy.
While waiting for chemotherapy treatment, we had most of our healthcare appointments and follow-ups with Dietitians, Diabetes Nurse Community Educators, Oncologists, GPs, Endocrinologists and Surgeons via phone due to COVID. This was preferable to us because we didn’t have to travel so much.
The chemotherapy however did not go well and my husband nearly died. He spent 11 days in hospital recovering.
During his stay in hospital, my husband agreed to my request for a palliative care consultant to support my needs. We just needed someone I could talk to about the complications that we were dealing with. For me, in particular, I was feeling very alone. Although I have been married for over 30 years to my husband, we have no children, I am a migrant with all of my family overseas and I had just retired.
My husband was given two weeks to decide on whether he wanted to try chemotherapy again or go into palliative care. He chose palliative care because given only 12 months to live, he did not want to waste any more of it in hospital recovering from chemotherapy treatment.
Once his decision was made, we were both very happy. Without further treatment, my husband regained weight, his hair grew back and he was able to do what he has always loved: gardening, walks, and helping others.
There have been a lot of things I have had to compromise on that I thought my retirement would bring, especially travel. But COVID helped put an end to that as well.
Recently, my husband celebrated his birthday. The day after his pains began again. We know time is limited and we are grateful for this knowledge. It has made us slow down, be kinder to each other and not expect so much from life anymore.
At this stage, palliative care support is there when we need it rather than being a scheduled event. This has made our lives easier and more enjoyable. Being given honest and open communication about what to expect and how it will be managed has made us both feel more comfortable and secure to deal with the final stage of this illness. It’s always good to know that someone has your back.
Further resources to support bereavement for home care workers, clients and their families can be found in the Home Care toolkit on the ELDAC website, www.eldac.com.au.
Dr Sandra L Bradley, Advance Care Directive Consultant