Care givers get really good at being advocates for our loved ones, when we become a part of cancer world.
Some of us keep a notebook from the first day of diagnosis to the last. It’s a journal of quotes from doctors, so we can recall conversations about care. Sometimes we make notes about medications, or schedules of treatment, even names of new nurses, specialists or social workers who join our team of experts.
It helps us advocate for our patient. It’s a crucial part of cancer care. Everyone needs an advocate. And as the care increases, we pride ourselves in taking control to make sure all the moving parts of the care process work in-sync. Control might sound like too strong a word, but believe me, it’s not. It’s the password that allows us to ask the hard questions; to inquire about doses of meds or why another MRI or CT scan is being ordered. Advocates earn their control.
And then the day comes when the word “hospice” floats across the room. The evaluation of the patients’ condition says there isn’t much more medicine can do and a different level of care is needed….end of life care. There are hospice nurses, hospice doctors, they explain what symptom relief is and what symptom management is all about. On the practical side, some one explains how insurance coverage handles hospice care. It’s all spelled-out in plain and simple terms.
But it’s not so simple.
My friend is facing this tonight. She’s been the leader of her husband’s team..the advocate. She’s taken a hard, heart-breaking job and made it her reason for living, while he has tried so hard to live.
Control will shift now, too. But I want her to know tonight, that this is not the time for giving-up. Each breath he takes now is just as important as the first one he took after being diagnosed. I want her to know she’s made the right decisions through-out this journey and she made the right one now.
I want her to know she’s not alone.
July 4, 2012 @ 9:45 am
This is the hardest of stuff – my thoughts are going out to your friend as she and her husband face this next challenge. You are so very right, every moment and every breath counts as much as it did before. Thinking of them, and appreciate of this post for the care-givers and advocates.
July 3, 2012 @ 9:01 pm
Oh gosh…my heart goes out to your friend. We know what she’s going through and Al is right..when she lays her head down she will be alone with her thoughts and there is nobody that can help where they go. So many times I wished I could just put my head on the pillow and go straight out with no time for thinking. She probably has a good support system but ultimately it is on her and, like us, she wouldn’t want it to be any other way. I think we feel that is the only control we have in cancer world. I know you will be there for her Laurie and who better!
July 3, 2012 @ 7:04 pm
No matter how much we want her to feel not alone, the reality will be or is that she will be alone. Family and friends may surround her, do for her, tend to her but really she is alone with her thoughts and feelings and nothing will change that. When she puts her head on a pillow or lies down on a sofa or some kind of a sleeper, she will be left with her thoughts and feelings…her mind will not shut off to allow sleep to overcome. As so many of you already know, this is the role of the caregiver. In spite of its difficulty, hardships and sadness, you’d not give it up to anyone else….nor should you. Your loved one is struggling, trying to fight but losing the fight by inches each day. You do everything humanly possible to make it better but it is not possible. You do what you’ve been called to do…stay by your loved one, do what you can, talk and pray and cry and plead for mercy and healing…another day, another week or month but only if the pain is no longer present. Nurses, caregivers, lifegivers, warriors, guardian angels…..there are not enough apt descriptors for all of you. Always know and believe, as we your loved ones know and believe, that as we make our final journey, there is no one, absolutely no one, we’d rather have by our side. We are blessed. And we are not alone for you are by our side.
July 3, 2012 @ 7:04 pm
She is NOT alone…We are here lifting.