WILLIAMSVILLE — Just two years ago, I sat mute and even a little smug as I listened to two colleagues describe the difficulties of caring long-distance for a surviving parent - one a widow, the other a widower. Both were in their nineties.
Back then, my parents were each 85 and still seemed well enough to drive us kids crazy. They insisted on flying to California for a staged reading of my younger brother's play, they witnessed their great-granddaughter's baby-naming, and they nodded off during the commencement address of a granddaughter's college graduation.
My parents were not aware of all the behind-the-scenes planning that made these outings possible. And while my brothers and I executed the plans in our continuing efforts to be good children, we also complained to each other about things we couldn't say to our folks, like pointing out how much of their weekend in California they spent sleeping, including during the performance, or how badly they were both dressed.
For my father to dress poorly was hardly remarkable, but even he was setting the bar at a new low. For my mother to dress badly was not just new but alarming. She still had a closet of designer labels - always bought at a discount, she'd always brag. Now, she was wearing mismatched outfits that were invariably stained.
Only with hindsight do I realize she must have stopped telling my father what to wear.
Only with hindsight do I realize how well my parents were hiding my mother's mental decline - and how willing we kids were to let them.
My mom's the one who kept in touch by phone, and when she forgot how to dial, my dad placed the calls for her. He covered for her, so we were slow to catch on that Mom could no longer work the answering machine or reply to email. Once we figured that out, we started visiting more.
* * *
It was a few hours into one of these visits when my mom smiled at me and asked with luminous social grace, “And tell me, how are you related?”
I took her hand and fought to smile back. “I'm your daughter,” I said.
“And for how long?' she asked, as if I were telling her about an interesting hobby.
“All my life,” I said, and repeated my birth story, as she'd so often told it to me.
She was genuinely charmed to learn that I'd lived in the same places she had, and that I knew the family dog.
At first, my brothers and I were astonished at how quickly my mother's dementia seemed to have overtaken her. But now I think we were simply as willing to be deceived as my parents were eager to have us believe the fiction that everything was still just fine.
* * *
But everything was not just fine.
My mother is one of millions of elderly Americans suffering from dementia. My father is one of millions of elderly Americans who tried to care for my mom at home - a 24/7 job for which he had no training and little aptitude beyond enormous love and loyalty to his mate of 66 years.
Their insistence that “nothing was wrong,” and “we're managing,” and “your mother's just a little forgetful, that's all” made it clear they didn't want to admit what was happening - and that they didn't know what to do, not even how to ask for help.
This is not an unusual scenario for an elderly couple trying to cope with any illness, and it's fairly typical for a couple of my parents' generation when trying to cope with dementia, an illness predicted to become an epidemic at its current rate of spread.
Alzheimer's Disease alone - and Alzheimer's is only one kind of dementia - currently affects five million Americans; it is expected to affect 50 million Americans by 2050, with similar rates of spread worldwide.
Dementia is now more feared than cancer, and for good reason: there is no cure.
There are protocols for slowing the rate at which the disease progresses, and there are strategies for providing good care for both the person with dementia and her family. While these are mostly palliative measures, they make a big difference in the lives of all involved.
In his book The Alzheimer's Family: Helping Caregivers Cope, Robert B. Santulli, M.D., a geriatric psychiatrist at Dartmouth-Hitchcock explains, “Alzheimer's Disease is a family disease. […] Because people with Alzheimer's lose the ability to care for themselves, caring for the caregiver is essential to caring for the patient.”
This is certainly true for my parents.
* * *
My mother started falling frequently, first requiring hospitalizations, followed by around-the-clock nursing care in the home and, finally, placement in a nursing home.
When this happened, my father's relief was immediate and profound. He didn't have to admit how difficult it had become for him to care for my mother; it was obvious. He had become haggard with lack of sleep and gaunt with worry. Within days of my mother's transfer, his appearance started to improve, but the heartache set in.
For the first time in his 87 years, my father is living alone. He is like a widower, but with a wife who is still living. It has taken him months to accept that my mom will never recover, will never return to the apartment filled with the mementos of their shared lives, never resume the role of social secretary, or serve as his surrogate ears on the world.
He's very lonely, and he visits my mother daily. Sometimes, my mother recognizes him, but not always.
If there is anything good to be said for dementia, it is that at least my mother is clueless about her condition. She doesn't realize that she can't walk, doesn't grasp that she is dependent upon others to care for her every physical need. Fortunately, she receives excellent care.
* * *
In a bittersweet twist of fate, my mother's illness has provided an unlooked-for opportunity to improve family relationships.
As long as my mother was the telephoning matriarch demanding command appearances at the family table, my brothers and I remained kids. Without her casting us in our roles as children, my brothers and I have now become not just adults with one another, but friends.
And without my mother serving as the communication interface between my father and me, I've been able to establish a new, direct relationship with my dad. Communication remains a challenge, but we Skype. And recently, for the first time ever, he started to tell me stories from his infantry days in Europe during World War II.
So life doesn't end with dementia; it changes.
Had we accepted my mother's illness earlier, we might have been able to slow it down or prepare for it better.
But at best it would have only delayed my mother's slow, sad fade; in the end, we survivors would still be left to figure out how to live on.