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Transition #5: From Family Caregiver to Former Family Caregiver

family caregiverThree weeks after Joan’s transition from Spouse to Wound Care Nurse and almost eight years to the day of Joe’s diagnosis of dementia, he died.

The “silver lining” as Joan called it, was that he died at home, “where he wanted to be and where I wanted him to be too.”

There were times when I wasn’t sure it would happen that way.

Joan was exhausted from getting up every two hours to move him so that his sore wouldn’t worsen and under no circumstances would she consider a nursing home.  She’d had family staying with her by then – her daughter and her sister-in-law too.  “But getting up is my job. I’m his wife and I want to be with him as much as possible in the time we have left.”

And she was with him.

She’d been with him since she’d understood what dementia meant.  She was with him through the wandering in the beginning, the sundowner’s syndrome in the middle, the struggles to get him to bathe, to wear just one set of pants, to eat the meals she painstakingly made to suit his changing tastes.

Taking care of Joe required such intensity and focus – it was all-consuming.

And then, in a moment, it was over.

The woman who learned to take a two-minute shower, the very one who rarely slept anymore, suddenly had all the time in the world.


Her environment changed too. There would be no more hospital bed.  No more hiss of the oxygen tank, no more home health aides, nursing visits, or deliveries from Meals on Wheels.  As all of this sank in, Joan filled up with sadness. And she began the toughest transition of all from family caregiver to former family caregiver.

When we lose someone that has mattered tremendously to us, we lose a piece of ourselves too.  If we’re lucky, friends and family rush in to lift us up for a time, but sooner or later we’re left with the loss and life tugs at us to move on.   So often the tug comes well before we feel ready.

I’ve met many people for whom “moving on” proves to be an unbearably painful and sometimes insurmountable task.  Perhaps the caregiving lasted so long that the family member forgot who they were without it, or else the old skin of their former self didn’t fit anymore.

But not Joan.

“I’m hurting deeply,” she told me one day through tears, “but I know I did my best.”

And she had.  So many times I had witnessed her sacrificing her own well being to care for Joe.  So many times she’d shared that she’d cried herself to sleep and prayed for strength to keep going.

“You certainly did,” I told her. “And if you ever forget that, I’ll be here to remind you.”

“Good because I’m going to need that from you,” she said. “But today I need rest.”

*All identifying information has been changed to protect the client.

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This post is the last in a five-part series about the transitions in caregiving.

Transition #1: From Spouse to Family Caregiver

Transition # 2: From Go-It Alone to Asking for Help

Transition #3: From Private Person to 7-Eleven Manager

Transition #4: From Family Caregiver to Wound Care Nurse

{ 1 comment… add one }
  • Nancy Scagnelli March 30, 2011, 9:17 AM

    Dear Maria,

    I think a huge source of stress for family caregivers of Alzheimer’s patients in particular is something that is not often spoken about, and that is anticipatory grief. We begin to mourn the loss of our loved one sometimes years before their actual passing, frequently without realizing that the stress and emotions we are feeling are true grief. I salute all of the family caregivers of Alzheimer’s patients who give of themselves so tirelessly.

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