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CarerHelp Insights: How we prepared to care at home

  • 16 April 2020
  • Number of views: 1587
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When Jarrod was diagnosed with his second relapse of Acute Myeloid Leukemia (AML) in 2017, he and I both knew that this could be his final chance at treatment and remission. As we had two children at that time, the stakes were much higher than before and we both knew we had to plan for every possible outcome. We had many in-depth discussions at various stages of his treatment process, and as a result we’d managed to make decisions about some of the hardest topics well in advance. Well over a year before he died I already had detailed notes about his final wishes and his funeral, and he had even personally asked a close friend to be the celebrant at his funeral. This gave me immense peace of mind after he died as I already knew what he wanted, so none of the decisions were hard for me.

Once Jarrod had decided to cease active treatment and begin palliative care, I knew that we would make this happen outside of the hospital. He had made it clear during previous conversations that he didn’t want to die in hospital. His preference was to be at home

I was in a very fortunate position of having a close family member who worked as a palliative care nurse, and who made herself available to help care for Jarrod in his final few weeks. With her help it was very straightforward for us to put together a list of equipment we would require outside the hospital, and all of those requirements came together very quickly with the help of the hospital’s palliative care team.

"For my family and I, providing palliative care to Jarrod in a home environment was the best thing we could have done. It’s not something that would be easy for everybody, but should definitely be considered as a serious option if circumstances will allow it."

I have no doubt that my experiences of caring for Jarrod outside the hospital would have been much more difficult and scary without having the hands-on help of a palliative care ‘insider’ who was very comfortable with providing care to a patient in the home. I was able to give her the job of managing Jarrod’s medical care while I could focus on meeting his other needs and ensuring I was on top of all his final wishes. Because of all the planning we’d already done, I felt comfortable enough to openly go about contacting and meeting with a funeral director, and was even able to clarify some final decisions and details with Jarrod. Our eldest daughter came with me to the funeral home to choose a casket, which allowed us plenty of time to talk with her about what it was for and to make sure she was better-prepared for the funeral.

One of the most rewarding aspects of undertaking palliative care at home was seeing Jarrod’s reaction to being out of hospital on that very first night. He became really animated and full of energy, more than we’d seen in the previous six weeks, and it was a great experience to allow those closest to him to visit and say their final farewells in a much more positive environment. More importantly, it allowed our daughters to spend time with him much more easily, and as a result we all have some amazing memories from his last week of life. Another incredibly rewarding part of our palliative experience was Dignity Therapy, where Jarrod’s final words and thoughts were recorded and transcribed. I will be forever grateful that this happened, and that I was not the one responsible for doing it.

By far one of the hardest parts of the process was making the switch from being under the constant care of the hospital-based medical team to the home-based palliative care team. To suddenly have to put our complete trust in a new ‘team’ of people that did not include any of the faces we’d become so familiar with was incredibly hard. I’ll never forget that feeling of panic when Jarrod was discharged from the ward for the final time without the usual list of instructions of what to do if something goes wrong.

For my family and I, providing palliative care to Jarrod in a home environment was the best thing we could have done. It’s not something that would be easy for everybody, but should definitely be considered as a serious option if circumstances will allow it. I really believe that it was a relatively easy process for us due to the amount of discussion and preparation we had done, and the unwavering belief I had along the way that Jarrod’s wishes were becoming a reality.

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