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Published: Saturday, 12/20/2003

Caregivers desperate for answers

In Tuesday s column, I wrote about my elderly mother s medication problems. I detailed how, last year at this time, she began having hallucinations that only got wilder, even as doctors prescribed more and more meds. Last Christmas, I assumed my mother was forever lost to sudden-onset dementia.

But after one of her doctors took her off several medicines, my mom was almost her old self again within just a few days.

The first phone call I got Tuesday morning came from an elderly southeastern Michigan man. He said he wanted to discuss what I d written but then began to weep.

“I can t talk now,” he said, voice breaking, before he hung up the phone.

Since then, I ve been awash in reader e-mails and, more interestingly, their phone calls. While most reader response arrives by e-mail, this time people needed to talk.

I gave everyone much the same answer: Don t use my family s experience as a guideline, because each person is unique. Call the doctors and pursue your questions like a pit bull.

I ve talked to a lot of frantic people this week. One woman, who didn t want her name used, told me about her 70-something husband with dementia, whom she can t leave alone now for even a minute.

“I don t think [the medicines] are helping. ... Your article is the same thing I m going through with him. He s very, very confused all of a sudden. ... My life is at a standstill.”

Rose Chio, meanwhile, called to tell me about her mother.

“I appreciated that [column] so much,” she said. “It just seemed to answer so many questions. Some of the things you said about your mom, about hearing kids playing? My mom passed away a couple of years ago. She was on all this medicine, and started seeing cats in her room and hearing kids playing. ... We kept saying we thought it was the medication, we kept telling them [the doctors] that, but they re just overwhelmed and they didn t take the time, I don t think. We never got down to the bottom of it.”

After this week, I have an image of some large, unrecognized cadre of caregivers out there, stumbling along as best they can in isolation from one another, unsure what to do and uncertain of their options.

They are emotionally and physically spent. Bewildered, exhausted, and sad, they succumb easily to the guilt that comes with feeling that if only they d try a little harder, do just a little more, then acts of love alone would be enough to fix what everyone around them insists is unfixable.

Surely this is love in one of its most raw, most painful states.

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