Tag Archives: dementia

Memory Pools

Memory pools . . .  I wrote the term on the back of a bank deposit slip because I read it somewhere and liked the idea. My note said, “These are places like hospital waiting rooms, where memories accumulate in vast amounts because of the deep, grazing experiences people have there.” The bank slip ended up in the bottom of a laptop bag and I never re-read the note to myself until weeks later when I got home from vacation. I wondered where the magical phrase came from. The only legible author information was “Joyce”.  Was it James Joyce?

Thank heaven for Google. A search engine remembers so many things that I can’t. It’s even harder to keep track of details lately because my mom’s care needs have surged dramatically. Figuring out new ways to meet them feels like a part-time job. To this harried person, memory pools sound like cool, tranquil bodies of water where caregivers should swim a few laps before autumn sets in. Or they might be watery regions of the brain where the beautiful recollections of your life gather to keep each other company.

To solve the mystery of the memory pools I typed my three clues — “memory pools Joyce” — into the Google search bar. In less than one second, I found out that this concept comes from Joyce Carol Oates’ memoir, “A Widow’s Story.” The book chronicles the author’s devastating experience of unexpectedly losing her husband after nearly 50 years of marriage.

Suddenly, I remembered that I was attracted to the idea of “memory pools” because it seems to me that caregivers spend huge amounts of time in them. Until Joyce Carol Oates gave me a name for these places, they were just abstract experiences. A memory pool could be the doctor’s office where hundreds of worried families try to swallow the word “Alzheimer’s” or “dementia” when it’s delivered as a diagnosis. They could be the corridors where our loved ones sit while waiting for an MRI. All summer I felt like I was diving into a memory pool every time I entered my mom’s former home to pack up her belongings. How many cups of tea did we drink there at my grandmother’s oak table? How many times did we huddle under quilts in front of the TV while George Bailey discovered he’d had A Wonderful Life?

Then it occurred to me that caregivers may be the lifeguards watching over memory pools. As the details of their lives slip away from our loved ones, we strive to preserve them in some form that can be cherished and passed along. Memory pools are places where the tides of our lives rise and fall and push our wobbly boats toward the sea.

A Tale of Two Pills

People seem to have tremendous faith in pills. Pharmaceuticals help us manage many diseases, so maybe this fervent belief has some grounds. But dementia is a disease that is very resistant to intervention. Our family has experimented with two different FDA approved drugs in an effort to improve my mom’s quality of life. One had a minimal, positive effect. The other was disastrous in every way and made us change our approach to care.

Months before my mom had a real diagnosis, her family practitioner prescribed Aricept to treat her memory loss symptoms. It was not a terrible move. But it bothered us that no real study had been conducted to identify the roots of her illness. There was no PET scan, no MRI.

When Mom told us that she was taking this drug, we asked her what diagnosis she’d been given. She answered that there was no diagnosis, just memory loss. Then she laughed when she told me the drug was waking up her ovaries instead of her brain. A few months on this medicine brought modest improvement in mental function, but had zero effect on the progress of the disease.

After changing doctors, we pursued a twisting path of investigation and dashed hopes. Eventually, my mother got a more precise diagnosis of her problem. She had a rare form of dementia that is not known to respond to any course of treatment. To address her symptoms, she began taking Namenda, another Alzheimer’s drug that we were told would have a mild effect on her cognitive function.

A few weeks into the treatment, she began to have episodes of wild behavior. Mild mannered Mom was throwing her clothes around her room and hiding underwear beneath the bathroom sink. One day she removed the contents of her closet and hurled everything on the bed: dresses, blankets and tax receipts all over the room. Days later, I came home from the auto shop to find she’d shredded a pair of pants with a steak knife.

The most terrifying aspect of this incident was that I thought the disease was driving her behavior. We had one of the saddest conversations imaginable when I told her I’d have to call the doctor and he might make me put her in the hospital. She said was ready to go — not just to the hospital, she was ready to depart this earth! Together we cried a river.

Fortunately, my sister discovered that Mom’s strange behavior was a rare, but documented side effect of Namenda. If there is a moral to this story, it is that different people have different reactions to the currently available drugs. My mom is tiny and has always had difficulty adapting to normal dosage guidelines. In this case, the consequences of that tendency were horrific.

This story is here to serve as a cautionary tale. If you’ve have had better experiences with medications, I would love to hear about them. Feel free to share any good news with other readers of this page. We all need to learn as much as we can.