A number of people responded to my blog about my Uncle Stan. My friend, Darcy, has been caring for her mom who lives in the same place as Stan. Her mom has dementia and has a small studio in the Assisted Living side of the Retirement Community. She wrote this in response to another of her friend’s whose mother is just entering the dementia stage: “that you don’t know who you are when you are taking care of your mom. This made my whole world make sense, finally. Those simple words I don’t know who I am brought everything into perspective for me. Not that I understand all the emotions I went through here in Princeton and all of the emotions I continue to feel now that I have left. This will take years. But coming back, returning to Stonebridge, threw me into the old feelings of emotional chaos and I didn’t expect this. I was quite floored by it all. I felt guilty not spending more time with my mom and yet my body simply gave out on Friday. All I wanted to do was sleep.
I think it’s impossible to know who I am when I’m taking care of her because there are so many different people involved. Internally, there is my little girl, my childhood, adulthood. I am my mother’s daughter, friend, care taker. Added to this is the great unknown, the day to day step to step into aging, the uncertainties that come with this. How will my mother be today? How and where will her mind be? When will she fall again? This alone creates a myriad of emotions. Then throw in siblings and all of their emotions, their uncertainties, the family dynamic surfacing over and over again making us all crazy at times because there isn’t one truth yet we must be looking for that one stability. But it doesn’t exist because we never know what is coming next. The same way we don’t know what our siblings will do next. It’s a constant confrontation of the complexities of the past, present and whatever may be in the future.
It’s not like when we were growing up and we had parental guidelines already established for us. Friendships had their own boundaries, too, ones we navigated on our own. When it came to those friends and the twists and turns in life, we felt we knew what mattered most, even if only at that moment in time. Now there are no guidelines, only the heart. I wonder if peoples’ best and worst qualities come out when caring for an elderly parent.”
Darcy also recommended I read a book which another friend had already suggested I read. BEING MORTAL by Atul Gawande. Gawande is a surgeon at Brigham and Women’s Hospital in Boston, a staff writer for The New Yorker and teaches at Harvard Medical School and the Harvard School of Public Health. In his free time!! he writes books. Gawande poses a question that I’ve never heard said by a doctor–“Do we try to do too much? Are we just trying to fix the next thing or are we thinking about the ill person in what may be their last years and asking them what they want?” He calls these the Hard Questions or the Hard Talk. It is a very provocative and thoughtful book. He even gives the example of his own father who developed a cancer in his spine. It is a book all of us should read, to prepare ourselves for the future and to help our elders get what they really want–which may contradict what a specialist doctor wants for them. We are all going to die but we have choices, up to a point, where that will be and how it will happen.
I’ve thought of Stan ever since I returned to Paris. He did not want to be in that bed up on the Skilled Nursing floor. He didn’t want to be poked and prodded all day long having his blood drawn, helping him sit up or lie down. What he wanted was to be sitting in front of his computer and doing whatever he enjoys doing. He doesn’t have to walk to do that. He has now got an aid 24/7 to help him get his breakfast, shower etc. But I don’t know if he is back in his apartment or still up in Skilled Nursing. Being Mortal has given me a whole new way to think about what happens next, what to ask Stan and then to listen. It’s allowed me to be really honest and say that this fall is probably the beginning of the end. Gawande says that if he can live the way he’d like to live, in his apartment, surrounded by photos of Enid and all his Princeton Basketball paraphernalia, the end may be further away. But the Stan that is up in Skilled Nursing doesn’t want to live the way he is living up there. Neither would I. A specimen under the light of nurses and doctors and aides none of whom knew him until about 2 1/2 weeks ago.
I recommend this book. Darcy calls it The bible for caregivers. Yup, it is the only one I know of that has the questions that we should be addressing now.
And in Paris….Life is cold but at the same time full of activities. I’m feeling grateful to be here right now, with good friends and activities I love. Christmas Parties bringing a lot of people all together in the same room maybe the only time all year!! And the lights!!!! The Champs Elysees is lit up and the Ave Montaigne looks absolutely elegant with lights in all the trees and little tiny blue sparkly lights flashing on and off inside the the white lights. It’s a wonder to behold.