I have a game plan, though it has as many questions as answers.
Some time in the next week, I will fly to Florida and bring my mother to Seattle for treatment at the Seattle Cancer Care Alliance. She is suffering so much pain and discomfort already that I am trying to arrange a medical mercy flight, but barring that, we will have to fly first class. I don't think the bigger seats, complimentary drinks and better food will be enough to anesthetize us during the five-hour flight. I'm not counting on the movie either.
In ever other aspect we are also flying blind. What will the doctors tell her about her prognosis? How will she manage the rigorous chemotherapy? I've read that chemo can make you so bone-crushingly tired that you can't even get up to wash your face. Not to mention the possible, nausea, diarrhea, mouth sores, dry eyes, itchy hands and feet and compromised immune system that makes you vulnerable to infection.
We will apply for Medicaid in the hopes that it will help cover the cost of an assisted living facility, where I had to laugh when I noticed that one of the residents is named Mick Jaeger. In Seattle my mother knows no one but me. What will it be like for her to be isolated and ill in such a place? Even on her good days, it's hard to imagine my independent, younger-than-she-seems 75 year-old mother enjoying group meals or the bingo games and weekly outings to the drug store that I was told are the highlight of the residents' lives.
So my germ-ridden family and I will be her portals to the outside world. Over the past week I've begun adjusting to the fact that I will soon become a care-giver and will have to give up some control over my life. It's been hard so far to deal with all the logistics, but I've been able to take a break from cancer whenever I wanted, taking a run, hosting a birthday party, drinking wine with friends.
Now for me, every day will bring new, unavoidable responsibilities. And for my mother, unavoidable struggles.
We will truly be up in the air, hoping for a safe landing.
Monday, January 25, 2010
Thursday, January 21, 2010
Hero Sandwich
On some level I always knew this day would come, though I hoped to avoid it. But now, staring me in the face is this: my mother, alone and destitute, has cancer. And it's fallen to me, three thousand miles away, to support her, arranging for her treatment, housing, home health care support and emotional support. In the week since we've had the news, cancer has become an almost full-time job, piled on top of my responsibilities as a mother with a part-time job and a life full of commitments.
They say you don't know what you don't know. Little did I know that attempting to figure out her health care coverage would cause me to become unglued. Little did I know that every day, I would move one step forward and two steps back, yet still make time to bake birthday cakes and cupcakes for my two daughters, whose birthdays fell during Week One of cancer, and for whom I wanted to keep things as normal as possible. Now, facing insomnia after a particularly frustrating day, I worry that my youngest daughter, who has been suspiciously scratching her head for weeks, is harboring a nest of lice in her thick red curly hair. Lice (and cancer) is what happens when you're busy making other plans.
My mother dreads the nights, but I dread the days. The endless to-do list that is not do-able at all because of incorrect information, insurance loopholes and the sheer overwhelmingness of it all. The constant phone calls. And somewhere, buried beneath all that is the emotional toll of the news on my mother, me, my kids. It sneaks up on me, but frankly, I don't have time to deal with it.
A woman who recently lost her mother told me that she looks forward to this summer, so she can finally grieve. She's been busy with caregiving, death, the holidays and now the estate, that there hasn't been time for grieving yet.
I know I am luckier than many. I have a wonderful supportive husband, I don't have to work full-time and I have an understanding boss. Many people, friends past and present, have stepped up to offer support, the karmic pay-off of my mother's lifetime of giving to others and maybe even a reward for some of the giving I've done too.
But here I am, a native English speaker, intelligent and healthy, with time on my hands. And I am kerflummoxed at trying to make sense of Medicare and Medicaid and to figure out what makes the most sense economically. How do people with more daily challenges manage this at all? There are blogs and articles and books and they help, but they aren't enough.
It's been a bad week for me and for the universe - Haiti, cancer and the election of Scott Brown. There are a million homeless people in Haiti and red tape is preventing them from having tents to sleep in. Scott Brown was elected, they say, because of frustration over the economy, and now health care reform is stalled. We all want the same thing - simplicity, honesty and a humane approach to caring for people in good times and bad. Is that really so difficult to achieve?
They say you don't know what you don't know. Little did I know that attempting to figure out her health care coverage would cause me to become unglued. Little did I know that every day, I would move one step forward and two steps back, yet still make time to bake birthday cakes and cupcakes for my two daughters, whose birthdays fell during Week One of cancer, and for whom I wanted to keep things as normal as possible. Now, facing insomnia after a particularly frustrating day, I worry that my youngest daughter, who has been suspiciously scratching her head for weeks, is harboring a nest of lice in her thick red curly hair. Lice (and cancer) is what happens when you're busy making other plans.
My mother dreads the nights, but I dread the days. The endless to-do list that is not do-able at all because of incorrect information, insurance loopholes and the sheer overwhelmingness of it all. The constant phone calls. And somewhere, buried beneath all that is the emotional toll of the news on my mother, me, my kids. It sneaks up on me, but frankly, I don't have time to deal with it.
A woman who recently lost her mother told me that she looks forward to this summer, so she can finally grieve. She's been busy with caregiving, death, the holidays and now the estate, that there hasn't been time for grieving yet.
I know I am luckier than many. I have a wonderful supportive husband, I don't have to work full-time and I have an understanding boss. Many people, friends past and present, have stepped up to offer support, the karmic pay-off of my mother's lifetime of giving to others and maybe even a reward for some of the giving I've done too.
But here I am, a native English speaker, intelligent and healthy, with time on my hands. And I am kerflummoxed at trying to make sense of Medicare and Medicaid and to figure out what makes the most sense economically. How do people with more daily challenges manage this at all? There are blogs and articles and books and they help, but they aren't enough.
It's been a bad week for me and for the universe - Haiti, cancer and the election of Scott Brown. There are a million homeless people in Haiti and red tape is preventing them from having tents to sleep in. Scott Brown was elected, they say, because of frustration over the economy, and now health care reform is stalled. We all want the same thing - simplicity, honesty and a humane approach to caring for people in good times and bad. Is that really so difficult to achieve?
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