Imelda Gilmore cared for her husband Graham who was diagnosed with young onset Alzheimer’s disease. In this article, she shares why it was important for her to provide care during his illness and up to his death.
Why was it important for you to be able to provide care at the end of life?
I loved Graham and caring for him during his final months was a natural part of our relationship and a continuing expression of my love for him.
Also, I knew Graham’s wishes from his advance care plan, and so I wanted to make sure the medical attention he got remained within that.
Carers experience a lot of challenges in the course of caring, but were there rewards for you?
It is challenging, but for me, knowing that I was able to help Graham feel safe and secure, and that he was comforted by my presence were invaluable rewards.
Caring also made me feel useful and it helped my self-esteem when I saw I could help to make him comfortable, including monitoring what the professional carers were doing.
Another reward for me was seeing and having the memory of Graham laughing. Graham’s sense of humour was one of the longest remaining qualities throughout the disease, and there were moments that brought a real smile to both of us.
What practical advice can you give carers who have just started caring for a person at the end of life?
I would say to get as much support and guidance as you can because you will get one chance to walk with your loved one through this very important journey.
Looking back, I wish now that I was prepared for the startling rate at which the disease would progress. Also, it would have been helpful to know that changes in behavior are because of the disease - meaning these were not done on purpose or to deliberately annoy me. Hence, don’t hesitate to find information and support (CarerHelp website, Dementia Australia, Carers NSW), and ask for help.
"Get as much support and guidance as you can because you will get one chance to walk with your loved one through this very important journey."
Communication is very important too. Don’t be afraid to talk about what’s happening and test the comfort zone of the person who is approaching end of life.
I would also say that you treat each moment, each interaction, and each word as precious because every day is a gift waiting for you to open it and make some new memories. And even though the person’s appearance will change as death approaches, make sure that every now and then that someone is recording or taking pictures: an embrace, a smile, or the person’s hand encased in yours. These will be precious memories for you.
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