My weight is back to within the normal BMI range. I look and feel great. Strong. My energy is higher than it has been in months, at least. Maybe years?
Light as hope.
Light as health.
Light as love.
And with this healthy physical strength, comes another surprise strength of Stage IV. The lightness of freedom.
I am free from feeling I alone need to solve the problems I see. I am free of the guilt when I can’t. I am free of the desire to overfunction for approval. And this gives me a new freedom, a new space, for action.
The lightness of this freedom allows me to move mountains. Or at least help trigger the team who can do so, together.
I can’t imagine being my sister. It used to weigh me down to try. She’s a single mom with her own mobility and pain limitations. She is nursing her best friend and caretaker (mom) while mothering two challenging (but adorable) boys. And now it looks like she may be the last one standing. There will be nobody left to take care of her. She has been elected the new matriarch.
She’s cornered herself financially in Mom’s house. Escaping from the full-time care mom is starting to need seems to keep adding up to homelessness for my sister and her family. Finding a job and a place to live without mom feels impossible while mom needs so much care. In the meantime, the lines between adequate support, encouragement for independence and gradually growing neglect blur for both of us. They blur for all of us.
I think, for me, part of that blurring was caused by how overwhelming the situation has felt and how powerless I have felt and yet how responsible. It has blurred for mom because of her desire to support her daughter and be strong and leave us with a good memory of her and her death. It has blurred for Kaylea because she is under the overwhelming weight of it all, escaping here and there with marvelous family outings with her boys and gramma — the coast, Wildlife safari, festivals, parks… She is creating memories. But the house and gramma’s needs weigh heavier and heavier.
Until it’s just all too heavy. And it’s no longer OK. And we are not alright. None of us are.
And my Stage IV freedom lets me declare that without shame, or fear, or a misplaced sense of responsibility.
When the hospital suggests a residential rehabilitation program for mom, I jump at it. When they state the team working with mom will call a family meeting, I’m elated. There might be home visits? YES! We need these lines drawn for us. We all need the clarity.
More than a guide. This team will teach us, but also set the boundaries for us — expectations of what the house needs, what mom needs, what Kaylea needs.
It all really feels like what I need.
Here is what a team feels like. The doctor remember my mother and my sister from the last visit to the ER. He even knows I’m the sister from Seattle, even though he’s never met me before. Dr. Kahn is Mom’s doctor on the oncology/palliative care floor, where she gets kindness and freedom. He starts by lightening the treatments rather than working to *do* something to fix something. There’s a physical therapist, an occupational therapist. The Dr. is the first to diagnose it, but he asks me a question that allows me to state it rather than throwing is at me — We are here because we are overwhelmed at home. The physical therapist is the one who finds the solution — rehabilitation, training for mom to get her walking, dressing herself, bathing — And time for Kaylea to figure out her next steps. The occupational therapist shows us how simply we can start supporting mom’s independence — but how time consuming it will be.
Clearly everyone is on the same page here — and they are all working towards the goal moving mom to a place where she can actually get better for awhile. And with this team, whole family approach, I am hopeful that we will all be moving to a place where we can get better for awhile.