I am a person, wife, mother, daughter and friend. I am a hospice palliative care nurse and educator. I am owner and director of Life and Death Matters. My mother has been diagnosed with a terminal illness, with a prognosis of months. Once again I am a family caregiver.
At Life and Death Matters we create resources to help educators teach hospice palliative care principles and philosophy in core curriculum for Practical Nurse and Health Care Worker students. Our goal is to enhance the ability of the caregivers to provide excellent care for the dying. Our education strategies include blogging, tweeting, and facebook postings.
Since her diagnosis a month ago I have asked “What do I share?” “What do I not share?” “How do I write about this experience while maintaining privacy and space for us (family) to be real and not worry that whatever we do or say will be in the public domain?”
My plan as of today…
In the coming weeks and months I may share a few lessons that we are learning from wonderful professionals, resources that we discover and use, reflections on philosophy and principles of palliative care.
Although I will be authentic, I will not “share it all”. I will protect the privacy of our family, friends and care team. This will allow us all the space to be human.
So today I simply announce my “status update”- I am a family caregiver.
Next blog may be …..”The blessing of a thoroughly dismal prognosis”.
I’m so sorry to learn of your mother’s prognosis. When the “professional becomes personal”, I suspect that our professional expertise goes out the window. My mother died in February, and although I’d been working in hospice palliative care since 2000, I felt as overwhelmed and incapacitated as any family member who hadn’t had the benefit of working in end-of-life care can feel.
I didn’t share anything about my mother’s condition until the day she died (example here, including a profoundly helpful quote from Rona Maynard’s highly recommended book “My Mother’s Daughter”: https://myheartsisters.org/2012/02/21/when-your-mother-dies/
We see a similar response when doctors suddenly become patients themselves. Not that I’d recommend hospitalization to improve the bedside care of all med students, but it’s not a bad idea…
Take care and good luck on this new journey with your Mum.
Sometimes people say “Now you need to be daughter, not nurse”. I can not really understand that. It is rather like saying, “We are going to cut off one of your arms, which one would you like removed?”
As I wrote in my blog… my life is full. I have many roles and relationships. Much I have learned. And that learning does inform all my actions. Yes, some of it goes out the window… but there is much that is so woven into the fibers of my being that I am not able to separate.
On the other hand, it is lovely to know that I am not responsible for all the care, or all the decisions that need to be made right now.
My siblings are pulling together in a remarkable way, and with back up from extended family and friends, they is much support.
I have learned some good self care tips… will write about them one day… check back!
Love to you,
Last September my mom died at 65 after a 6 battle with Ovarian cancer. One thing that I learned through it (and I learned a lot) is that it is so very different when it is family. That said, be good to yourself, Kath. I am sure you know all they wonderful resources in your community. Use them. Reiki was the only thing that kept me from flying off the face of the earth. I blogged too and though nobody I know personally read it I made a lot of online friends. (I am still blogging but it is now a lot of grief and creating a new life as a motherless daughter.)
Kath, this is time for you and your family. I am thinking about you and sending good energy your way.
You are on the other side of the water now! If I was high on a mountain on this island, then I could wave over to your island to say hello!
You will have fun reading my tips on family caregiving and self care… I have a new strategy to add to the list!
Warm wishes and thanks