“My mother fell ill, 7 years later we made a heartbreaking decision”

My mother’s memory loss first became apparent in 2009 when my parents visited my weekend home in the Catskills on July 4th. She told a funny story – not unusual considering she was a legendary storyteller. But just seconds after she hit the punchline, she started the same story all over again, literally, from the beginning, unaware that she’d just told the same anecdote.

When she returned to Maryland, a neurologist diagnosed her with “mild cognitive impairment.”

My mother and I have always been close, and even though I lived hundreds of miles away in New York City, we spoke every morning. I could constantly follow her downfall through these chats. At first it was nothing major: she repeated herself, lost herself in the middle of a thought, or forgot what she had done the night before. Eventually, she lost the ability to hold meaningful conversations; She couldn’t follow the news, remember the plot of the movie she had just seen, or remember where I lived or how old I was. While this was worrying, it was not alarming. Her decline was gradual – “mild” as the neurologist would say.

After about six years, however, something changed. Her decline became more dramatic: she got lost on the way to the house where she had lived for more than 40 years. She didn’t recognize her own clothes, her own bedroom, her own husband. She couldn’t tell if I was her son or her husband or her grandson or what decade it was.

The more confused she became, the more agitated and frustrated she became, and the more she lashed out at those around her. She yelled at my father for no reason or cried out of sheer confusion on the phone. She started packing to “go home” to her childhood home in Jersey City and waited for her mom to pick her up, but what she packed was random—a cutting board, my dad’s sweaters, a box of Rotini… Noodles, a stapler—and her mother had been dead decades, another thing she’d forgotten.

As her condition progressed and her “mild cognitive impairment” progressed to Alzheimer’s disease, caring for her became a full-time job.

Wayne Hoffman and his mother
Wayne Hoffman and his mother Ethel dance at a wedding in 1989
Courtesy of Wayne Hoffman

My father hired a driver to take her to a social group for people with Alzheimer’s on weekdays so he could drive to work. He found a helper to stay with her after the group until he got home to keep her away from the kitchen; She tended to “make dinner” out of raw meat and detergent, eating cat food, or putting flammable objects in the oven. But it still wasn’t enough to protect her: One summer evening, after the aide left, my mother put on a winter coat and snuck out the door, walking down her street and up the next hilly block until she was in front of the Fainting passed out heat and exertion, falling face first onto the pavement. When neighbors came to check on her, with bruises and abrasions, she didn’t know her name or where she lived, so they called 911. When my father found her, an ambulance was already on its way. So my college-age nephew moved in to babysit his grandmother the rest of the time, making sure she didn’t run away, fall, or get injured again.

Even with help, caring for my mother was primarily my father’s job and took its toll on him. The time he otherwise would have spent working, exercising, or hanging out with friends, he now spent watching her to make sure she was safe, all day and all night. Physically and mentally he was almost to the breaking point.

I brought up the subject of moving her to a full-time care facility, but he was unwilling to discuss it.

One man understood the whole history of our family: Jim ran the social group my mother attended and also moderated a caregiver support group my father attended.

Jim stayed with my parents once when I was visiting. He asked me how my father was doing.

“He’s having a tough time,” I admitted, “but he’s determined to take care of mom himself at home while he can.”

“Right,” Jim said. Then he looked at me and asked a question I didn’t see coming: “Why?”

I was caught unprepared. Why did my father plan to take care of my mother for as long as possible? Because that’s what a good husband does. What makes a good caregiver. what a good person does.

Wayne Hoffman and his mother
Wayne Hoffman and his mother Ethel in Spain in 2010.
Wayne Hoffman

What was that question?

Jim explained: Alzheimer’s isn’t like a broken arm; It doesn’t get any better after a difficult few weeks. It gets worse, then worse, until—for most people—living at home just isn’t an option anymore. At some point, it is no longer safe for the person who has the disease or the other people in the home.

“What your father says, when he says that,” Jim clarified, “is one of two things: either he’ll do it until he’s completely exhausted, and he just can’t take care of her anymore; or he will do it until she has a crisis that puts her in danger and he is forced to put her in a home. What I ask is: Why? If we know she’s going to have to move eventually, why don’t we do it before one – or both – of those horrible things happen?”

I wish I could say we took Jim’s advice. But like most families, we kept my mom home for as long as possible — until my dad was actually physically and emotionally exhausted and my mom had a series of minor crises that led to a major emergency where she could have had the house burned down , while my father slept upstairs.

Eventually, seven years after her diagnosis and a year after I spoke to Jim, we moved her into a home—the move we all knew was coming.

My father had been concerned about the move, worried that my mother would understand what was going on and resent him for “giving up” on her. But by that point, her Alzheimer’s disease was so advanced that she didn’t seem to notice the movement at all.

The three of us arrived at the facility where a member of staff welcomed them with open arms; My mother opened her arms in return, unaware that it was a stranger. When the employee asked my mother if she liked coffee, my mother nodded. “Well, let’s do something inside,” she said, leading my mother to the door. And just like that, without a fight or an unkind word to my father, she was gone, never to return home or even to mention her homeland of more than forty years.

My story is hardly unique. According to a 2022 special report from the Alzheimer’s Association, more than 11 million Americans — family members and friends, many of whom are seniors themselves — care for someone with Alzheimer’s “in the community,” providing unpaid help an average of more than 27 hours a week with tasks such as eating, bathing, dressing and going to the toilet. One study cited in the report showed that 86 percent of caregivers have been providing support for more than a year, another that 57 percent have been doing so for more than four years. Data from the Alzheimer’s Association also shows that 59 percent of caregivers report high levels of emotional distress and 38 percent say the same about physical stress.

While writing a family memoir about my mother’s Alzheimer’s descent, I spoke to many people who have been through similar things. The more people I spoke to, the more I saw the wisdom of Jim’s words.

Ask a caregiver or other family member further along the journey: if you knew what you know now, what would you have done differently? The answers are all variations on a theme: I should have gotten more help sooner.

My father told me that, looking back, he would have taken my mother away at least six months earlier – maybe a year. My mother would have been better off, and so would my father.

Making these decisions is never easy. In some families, people disagree about the “next steps.” Although we all agreed—my dad, my siblings, my aunt—that home would be the best place for mom, the big question was timing. When would we know it was time to move? In the absence of “a sign,” we waited and waited as we watched my father grow weary.

Sometimes it’s not even possible; Facilities are expensive and have long waiting lists. But Jim’s advice remains solid: Don’t wait for a crisis. Get more help, faster—from friends, family, medical professionals, charities, or government programs. Whoever can relieve you in the short term will likely make you a better caregiver in the long term.

If you think that doing everything yourself for as long as possible is the heroic, the moral, the most loving, the only “right” thing to do, ask yourself the toughest question of all: why?

Wayne Hoffman is the author of the crime family memoir The End of Her: Racing Against Alzheimer’s to Solve a Murder. Visit waynehoffmanwriter.com or follow him on Instagram @waynehoffmanwriter.

All views expressed in this article are the author’s own.

https://www.newsweek.com/mom-sickness-7-years-later-heartbreaking-choice-1732400 “My mother fell ill, 7 years later we made a heartbreaking decision”

Rick Schindler

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