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janeAfter the Shock: Taking Charge
The plunge into the first phase of caregiving—Shock and Mobilization—is always a jolt. It usually begins with "The Call": about a fall or an accident or a frightening diagnosis. The emotional assault hits everyone hard. Some of us go into hyperdrive to find answers; some retreat into denial and passivity; others bounce between anxiety and anger.
The family caregiver is absolutely essential at this point, to mobilize the search effort, ask the tough questions, seek out alternative paths, and draw in the rest of the family. This is the time to set aside old grudges with your siblings. Have no shame in calling on friends with connections in the medical field. But don't skimp on your sleep!
You need seven hours of shut-eye to rinse out your mind of the stress chemicals that will accumulate while you are lurching up and down the roller coaster of the search phase. An overload of stress makes us stupid! And your every waking moment will be dominated by the search for the right answer, the certain diagnosis.
Living With Not Knowing
For Heather in the video, the most fearful part was the lack of a diagnosis. One day, her 32-year-old husband Brian was a big strong take-charge engineer who loved to hoist their year-old son up on his broad shoulders. Days later, Brian's arms and hands were tingling, his muscles shriveling, his heft falling away at a rate of several pounds a day; what was happening?
The shock threw Brian into denial. Heather took charge. Being young, only 30, and a type A super-organizer, she did many things right. I call her a model of resilience.
"I was pushy," she admits, but without apology.
All the doctors could say for sure was that it looked like an autoimmune disorder. When one set of doctors couldn't give her answers, she found another medical group. To save time and spare her husband from having to repeat his upsetting story over and over, Heather wrote out his medical history and handed the synopsis to each new nurse. She hit the phones every morning, insisting that the next doctor give them a consult right away. She asked nurses to make copies of every lab test and didn't leave a doctor's office without them, so she could show the results to the next doctor. At one point, Heather was dealing with eight different specialists.
Like so many of us, Heather blocked out any idea that she was a caregiver. "It was overwhelming to think of myself as a caregiver for a dependent adult," she admitted, "because, to me, that meant this was a lifelong situation. To accept that, early on, would have been unbearable."
But, in fact, Heather was performing a vital professional role, as do all caregivers in the Shock and Mobilization phase. She was the quarterback who kept everyone else on the team informed of what the calls were, play by play. She was focused on keeping the ball moving down the field toward the goal—diagnosis and treatment. Without her, all would have been chaos.
Most important, she asked each doctor to treat her and her husband as a team and to talk to them both. The ill spouse should not be ignored and made to feel helpless, and the caregiver should not be dismissed as "just the wife."
How Good Is Too Good a Caregiver?
But Heather went too far. So many of us do, as spouses.
"I was trying to play too many roles," she admits. "Wanting to be the best mom for my son, the best wife, the nurse-protector for my husband, the top administrative assistant. Sleep, I looked on as a luxury."
Brian had to let Heather drive; he had to rely on his wife even to wash his hair, since he couldn't lift his arms. This sudden slide into dependence, the humiliation of it, took Brian down into depression. That added to Heather's list of to-dos: She had to invent cheerful outings for their little family after she came home from work.
Heather's mother was begging to be able to help. Heather resisted. As a 30-year-old proud of her many competencies, to admit needing her mother made her feel like a failure. But there is another, deeper, almost universal reason that so many of us as caregivers refuse help in the early phase. Heather's attitude was classic:
"All I could think about was 'tomorrow this is all going to go away.' The minute we needed help was the minute I had to acknowledge that there was a serious problem, and I didn't want to do that."
Come back next week and see how Heather learns to accept not knowing—still no solid diagnosis. She and Brian work out a New Normal and find joy in the deepening of their marriage.
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