It’s been 24 years this month that my Mother left this plane. There is still not a day that passes that I don’t think of her. Yesterday’s talk by Rev. Richard, “You Want Me to do What?” along with the beautiful rendition of “Sending You a Little Christmas” performed by Julie Boniger and her wonderful ensemble, and then ending the day visiting a dying friend, brought back memories of the months that I cared for my Mom while she was dying.
When my mother was diagnosed with mesothelioma and given three months to live, she wasted little time in organizing her transition. First she sought a 2nd opinion from the top specialist in the country who happened to be at Sloan-Kettering in NY. Once he confirmed that this was it, that nothing could be done, she called together me and my brothers to lay out her plan.
Phil would be executor of her will and also her medical liaison since he was a Physician’s Assistant.
Dennis would inventory the contents of her house and begin the process of selling everything.
Charlie would arrange for the house to be sold.
And I would be her primary care giver since she lived with me and my family.
You want me to do what?
Okay…. No time for tears, sadness, it’s time to get organized. With a 3 year old son, 13 year old daughter, crazy 2 year old lab, a full time job and a truly patient and dedicated husband, I began taking care of my dying Mother. My best friend, my confidant, my partner in crime. Changing surgical dressings three times a day, arranging for equipment to be delivered and monitored, finding a nursing assistant that she liked, trying to get her to eat when she was rapidly losing weight, trying to manage her medications when she thought she could do it herself…the list goes on and on.
And then there was hospice. Of course, at first, Mom refused. Hospice meant she was actually, umm, dying. Yes, Mom, you are. The only way we convinced her hospice was a good thing was by telling her that more of her medical bills would be covered if she was in hospice. She was nothing if not frugal.
Having hospice meant periodic visits from their Social Worker. This particular day, I had just gotten home from work and was scurrying around trying to show the CSW how organized I was. I had the kids occupied, the dog outside, Dan was at work, and my Mom was neat and clean in her room.
“How are you?” asked the CSW.
“I’m fine. We have another O2 tank being delivered and I got them to pick up the wrong supply order and bring the right one.”
“Great. But how are you?”
“Fine. She has an appointment on Tuesday to check her incision..”
“Diane, would you like a cup of tea?”
“What? No. I’m fine. And I have a call into her doctor because she is complaining of being so tired and I’m concerned about her appetite.”
“Let’s get that cup of tea” as she walks upstairs to the kitchen. “Sit down while I put the kettle on.”
Silence. I remember that moment of silence and wanting desperately to fill it. She sat down, looked at me, and, once again, asked, “How are you? This must be very difficult for you caring for so many people at the same time.”
I could go on and on telling you how I continued to try and say I’m fine, I’m fine, I’m fine. I tried, but instead I looked down at my hands and the tears came. I had been holding it together for so long. If I let go, I was afraid I would never make it back and continue to do the job Mom had given me to do and to do it well. That mattered to me. It mattered so much – I just couldn’t let her down. I didn’t want to let go, but I did.
And, to this day, I am grateful for a wonderful, caring, hospice worker whose name I cannot remember for taking the time to care for the caregiver. I needed to cry that day more than I needed anything else. She sensed that, she could not help but sense that.
Yes, I am so grateful and I am grateful for every hospice worker that does this work with love. They help define the phrase “dying with dignity”. They understand the caregiver more than the caregiver does. Through every step of the process, they were there for me. Every step.
It’s been 24 years but I remember much about that time. It was, strangely, the most magical time of my life. So, Mom, I’m sending you a little Christmas – from my heart to yours, thank you for asking me to care for you. Diane