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janeThe Colberts: The New Normal
(Part 2 of 5)
How long did it take you to recognize yourself as a caregiver?
This is the first barrier on our journey into the Labyrinth of Caregiving.
Harriet Colbert was like so many dutiful older daughters, especially if they are unmarried and used to the role of mother hen. Harriet had taken care of Dad single-handedly until he died; her six brothers and sisters assumed she'd do it again for her mom.
She is the model of a Heroic Harriet. A delivering angel. But caregiving is also hard work. And nobody is cut out to do it alone, indefinitely.
It's one thing to volunteer to take on primary responsibility for someone with an acute illness. Treatment may lead to full recovery, and both patient and caregiver can return to their normal lives. It's a sprint, and most of us can do a sprint for some months. But when you're dealing with chronic illness, or the multiple conditions so common among older people, you won't be able to return to the old normal. You will find yourself at the second turning in the Labyrinth of Caregiving: The New Normal.
Your own life will change. The ways in which you think about your life and your own future will change. You have a new role: family caregiver, and the sooner you recognize it and see yourself as providing a highly professional service, the better you will be able to perform—without putting your own health and well-being at risk.
If you start out by setting up the New Normal for a loved one with chronic illness, with you as the primary—and solitary—caregiver, sooner or later, almost inevitably, you will begin to feel trapped.
Harriet did the compassionate thing by bringing her mother home from the hospital. The vast majority of older Americans want to live in as natural an environment as possible, in spite of their infirmities. Harriet set up a hospital bed in the dining room and taught herself basic nursing skills by trial and error. But after a year and a half of taking care of her 84-year-old mother, at home—washing, feeding, dressing, driving, and medicating her Parkinson’s, diabetes, and creeping Alzheimer’s, Harriet was too tired to stagger upstairs to bed. She knew her mother would be up and down all night, needing to be monitored like a toddler, and Harriet worried that she wouldn't wake up in time to get to work at her 50-to-60-hour-a-week job. "I have to make a living," she would say, "and take care of my little mommy."
"You really need to avail yourself of the caregiver's support group at church," her brother, Louis, would urge Harriet. The oldest sister would look down on her younger brother, a veteran social worker, as if he were insulting her elevated position in their traditional African-American family: "We don't do that. We take care of our parents. This is what we do."
Secretly, Harriet's thoughts began bordering on suicide. "Sometimes I wonder, 'What's the point?'" she whispered in my presence. "I don't have any children, nobody to take care of me in the same way. I'll just, you know, take some pills when I'm 65."
Her sister, Lisa, tried valiantly to spell Harriet, working from her laptop in Mom's living room instead of going to her office. But Lisa couldn't concentrate, not with Mom constantly demanding sugar cookies, and her boss's patience began running out. Lisa was eating too much, sleeping too little, neglecting her two children, and feeling those dark emotions we try to pretend aren't there: resentment, frustration, guilt, and a gnawing sense of failure: This isn't working out; it must be my fault.
The fact is, the two sisters had set up the best New Normal possible for their mother, without seeking any further help. But that was the problem. In order to keep their jobs, which was essential given the collapsing American economy, they desperately needed help with their second job—as caregivers.
More on the Colbert family:
Part 1: Shock & Mobilization
Part 2: The New Normal
- Read journal
- Watch video
Part 3: How to Become a Fearless Caregiver
Part 4: I Can't Do This Anymore
Part 5: The Circle of Care
That sundowning will make you a crazy person. My mother in law is for some reason being stimulated by her morphone doses such that she wakes up late in the afternoon, after sleeping all night and most of the day, and then she jabbers and anxious checks and double checks what's going on. Sometimes into the night. She did this the other night. She kept telling her daughters, trying to sleep nearby, that her father was here and why weren't they being nice to him? Turns out it was a lampshade behind a recliner that she assumed was her long dead father. One of her daughters said, Mom? Papa Clarence is going into the closet so we can get some SLEEP. And finally they all slept.
There's a reason why sleep deprivation is considered an instrument of torture.
Thank you for these videos and this story. What a great, and very normal, family, to learn from.
Jane,
a caregiver to a caregiver of a dear very demented woman
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