I felt a passionate connection with everything Jane said today and on her blog which I follow regularly. It's so difficult to watch my independent 91-year-old mother struggling helplessly to be the person she used to be when her physical and mental condition now make it impossible.
For the past four years she was my full-time job even while she lived in an independent apartment in a retirement community. My two sisters live in Boston and they do everything they can to participate in her care. Her short-term memory is pretty much gone so she could call me ten times a day with major and minor disasters. We lived through hospitalizations, depression, anxiety and all kinds of problems.
[One tip I can give other caregivers is to write up a one-page summary of all medical problems, previous hospitalizations, allergies, medications, primary care doctors and emergency contact information. Update it as needed and print out a copy whenever you visit a new doctor or go to the ER. This has been remarkably helpful.]
Finally her doctor said that she needed assisted living so now she has a two-bedroom apartment with a live-in aide. That changed everything for me. One sister now pays the bills online and the other orders groceries by phone from a store that delivers. Now I can actually do my own work which is incredibly liberating. I still go with her to important medical appointments; I manage the emergency room; I'm the first call if something comes up; I visit her a lot. But I can't change the fact that she is in a decline and that her life is no longer the one she wants.
Like Jane, all this has made me think of the end of my own life. I'm not a pessimist like my mother and I don't feel threatened by people who are disabled. In fact I used to be a para-chaplain visiting people in nursing homes. I have no idea what awaits me but I hope I can meet it with courage. My mother says she never gave any thought to what being old might be like. I have no illusions about it. If I need to move to a retirement community I know which one it will be.
The issues that came up for our family weren't between siblings (mercifully our hearts are completely united) but rather the differences in viewpoint and personality that my sibs and I have always had with our mother although she loves us and we love her.
When she dies, although I will be very sad I will know that I was completely devoted to her and that she acknowledged it many times. Last year I wrote an essay about her to read as a eulogy. I knew that I would be in no state to write it when the time comes. I also wrote a poem about her when she turned 80 and that expresses how I feel too. Now it's just a matter of helping her to get through these hard times. I am thankful for all the support I have had from members of my family and other friends.
We caregivers have an opportunity to contribute deeply to the person we love. As we read in the poem "Do You Love Me?" by Rumi: "I have lost all my strength/but from your power/I am able."
Note to staff: the attached photo is of my mother's 89th birthday party.
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