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Transition #1: From Spouse to Family Caregiver

In the summer of 2006, Joan’s husband Joe was arrested.  Not by the police, and certainly not as the result of anything he’d done wrong.

family caregiver

No, Joe was arrested for a far more insidious reason – he was arrested by dementia.

All indications were that Alzheimer’s disease was the cause.

A strong, able-bodied man who’d held the same job for 20 years, who’d relished trips to Atlantic City and spending time with his extended family on weekends, was irrevocably changing.

In order to care for him his wife would have to change too; she’d have to transition.

This story really begins five and a half years earlier on a bleak January day.

It was then that Joe was told about the dementia by a physician in Brooklyn with Joan by his side.

And as so many older adults and their families’ experience, Joe and Joan were handed pamphlets about Alzheimer’s as the conversation with the doctor concluded.  They were encouraged to look them over and call if they had any further questions.

What the physician didn’t know (what so many physicians don’t know about the people who rely on them) was that Joan couldn’t read well.  Embarrassed to ask any clarifying questions on the spot, she later told me that the tone and pace of the doctor’s speech made her believe that what he spoke about wasn’t something bad.

The tone and pace of the doctor’s speech made her believe that what he spoke of wasn’t something bad.

Plus, she added, he prescribed medication. “Medication said to me that he was going to be alright.”

Of importance here too was the fact that Joan and Joe’s marriage was in turmoil and had been for years.  In fact, the doctor’s appointment that Joe had asked Joan to come to that day marked the couple’s first meeting in months – a play for sympathy, she’d thought.  “For all the times he’d left me without an explanation only to return several weeks later to say he’s sorry.”

As they exited the building, she tucked the pamphlet into her old winter coat that was indeed worse for the wear, the very one she’d soon replace without checking the pockets.

Years later Joan would learn what Joe had done with the pamphlet he’d been given. Much like the diagnosis itself, a co-worker had shared that Joe had kept it in his locker among other papers.  “It was one of the many things he’d pull out from time to time to read when he thought no one was looking.”

Fast forward now to the summer of 2006 and to the arrest of Joe by the dementia…

Even more so than the meeting at the doctor’s office five years prior, the summer of 2006 was pivotal because it was when the diagnosis became real and the transition began.

Joe had been gone again for a few days when the police called Joan.  He’d been picked up across town, disheveled and disoriented. This was the second such call in as many weeks and Joan was becoming wrought with worry.  “When I saw him my heart sank,” she told me. “He was a mess – like he’d spent those days sleeping on the street.  That wasn’t like him,” she said. “Joe has always been concerned with his appearance.  He wanted to look good.”

Joe’s wandering had triggered a number of referrals and one of them was to me.  What followed was a conversation that picked up outside the doctor’s office five years earlier. Using pictures of the brain to help her understand what was happening to Joe and what would continue to happen in his brain over time, I spoke candidly about the care that he would need.

In contrast to the meeting at the doctor’s office, I had no doubt that what I had shared was sinking in.  She cried openly (something I’d later learn was uncharacteristic of her) and she also asked several questions “to make sure I’ve got this right.”

People all around the world become family caregivers to their spouses and yet I bet few could trace their transition back to a particular moment.

But there was a moment for Joan.

Sitting there at her dining room table that held two glasses of homemade lemonade she took a deep breath when her tears finally subsided and said: “He’ll live here now and he will sleep in my bed.   He’s my husband and I will take care of him because those are my vows.”

And so Joan made the transition from Spouse to Caregiver right in front of my eyes.  She would have no way of predicting the transitions or the work that lay ahead, but one thing was clear: neither she nor Joe would ever be the same.


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

Transition #2: From Go-It Alone to Asking For Help will post on Wednesday, July 28st. Don’t miss it! Subscribe to my feed by clicking here.

{ 3 comments… add one }
  • Maria August 2, 2010, 5:47 AM

    Thanks Mom. Hopefully, you’re not the only one reading all these 🙂 XOXO

  • Ann August 2, 2010, 12:06 AM

    It gives me such a warm feeling to read your words and thoughts. This is where you belong helping people with word and deed. I knelt down after reading the last one and thanked God for you. Keep up the good work.
    Love, Mom x0x0

  • Dave Gastin July 14, 2010, 12:34 PM


    I became a caregiver for my aunt who broke her hip. It is a tough and humbling job. I did end up inventing a product to help her out though.

    I posted a link back to this excellent article on our Facebook fanpage (http://www.facebook.com/#!/pages/Toilet-Riser/128257350547563?ref=ts)

    Thanks for sharing your story,

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