None of us are sleeping well.
I’m near my mother’s bedside at a hospice in the south suburbs of Chicago. About two months ago I inserted myself into my mom’s care. My older sister had been her primary caregiver but had a health crisis of her own.
She has dementia, Alzheimer’s I assume though we never got a definitive diagnosis because about six weeks later we took her to the emergency room where she was diagnosed with colon cancer. The cancer is well advanced and has metastasized. She had two surgeries to repair her colon and suffered a stroke after the 2nd surgery. She is now in hospice with perhaps a few days or weeks to live.
Before we discovered the cancer I was anxiously trying to mange her care, sometimes with the help of my siblings and sometimes on my own. I was completely at sea. I found the Illinois Department of Aging website which referred me to Catholic Charities. After encountering busy signals and unattended voice mail boxes they promised to arrange an assessment but then never followed up. But the cancer made care for her dementia almost entirely moot.
Now we are waiting for her to die. There is no hope for recovery. The objective is a relatively painless death. And what is hard to admit is that we are eager for the end. The person we knew is gone, dementia has already taken her from us. Without morphine and Ativan she would be in agony. She can neither drink nor eat. Per her wishes, (expressed when she was competent) she is receiving “comfort care” which means only oxygen and lots of morphine.
The stroke has rendered her unable to talk so in her rare moments of consciousness she only moans and gestures with the one hand that still works
Still, she hangs on and I do too. I don’t know why I’m here. She probably doesn’t know I’m here but I keep coming back
Most of us only have one mother so we endure this just once each lifetime. My father died about 22 years ago, quite suddenly. I lived in California at the time and couldn’t be present when he passed from a heart attack in a hospital emergency room. That was comparably easier.
My in-laws died several years ago after agonizingly long illnesses (ALS, prostatic cancer, Parkinson’s). I loved them and helped as much I could with their care but they were not MY parents. This is different. Each day in this hospice I compare the birdlike emaciated woman in the bed with the mother who raised me. She was the manger of our household. She had a sense of humor. She was kind. She was not given to drama nor self-indulgence. She could be severe but was never cruel to us. She was my platonic form of strength and now, what remains of her is entirely weak. Of course I know that we will all decline and die unless we are taken by violence or accident but my childish mind is rebellious. It will take time to reconcile this.
I’m conscious of self-pity and feel ambivalent about indulging it. I don’t know why but I am at my weepiest when people show me sympathy. When I’m alone with my grief I can generally keep my eyes dry.
I really started grieving months ago when I faced her decline from dementia. Having learned that mom hadn’t seen her doctor in a few years I arranged an appointment. I drove her to the medical center to see the doctor, to the lab for blood and urine and finally to the hospital for X-rays of her arthritic hip. When we returned home we were both exhausted but she was also confused and frightened. She forgot why we were at the hospital. She told me she could feel her mind going, that it was like she was another person floating above the old person. My old mother was not given to figurative language. I went home dispirited and depressed. I wanted to help her but I felt that I’d accomplished nothing. Her appetite had been waning and we were finally alarmed enough to pester her doctor about it. He advised the trip to the ER where we learned of the cancer.
I want to think of this as a remarkable, singular experience but it’s quite common. Mom is 81 years old, that’s an almost perfectly average life span for a modern woman. No one is spared. My experience is unique I suppose but not special. I try to be careful not to become addicted to sympathy and attention. It’s a temptation.
She was an unpretentious woman. Call her Pat, not Patricia, better yet Mom. She was a mom. Even when dementia took most of her memory she never forgot that she had raised six children.
Why are we here? Does she know that we are here? I don’t know but the thought of her dying alone seems improper. We are here to soothe her on the rare occasions that she regains consciousness. I’m afraid that, because of the dementia, each time she wakes up this place seems strange. I’ve been here for a few hours today and she has not yet awoken. She has moaned in her sleep a few times and stirred briefly. Two of my sisters have been here with me and we don’t have much to say to each other. It’s not an awkward silence; it’s just that we’ve talked about mom constantly for the past few weeks and we are done now. We are tired and there is nothing more to talk about except traffic and weather and how we’re not sleeping well.
Ideas, Like Sugar and Caffeine 