There are an estimated 410,000 people ages 65 and older living with Alzheimer’s disease in New York City. Of these individuals living with this most common form of dementia, many have caretakers. And of these caretakers experience a lifetime of tolls.
“It’s a horrible illness,” says an older Upper East Side caregiver of dementia, which refers not to a specific disease but rather several that severely impair the ability to remember and make decisions in everyday life. “I lost members of my family to cancer ... but this is much worse.”
Dementia is particularly upsetting because it deteriorates the brain. Physicians and researchers continue to try to find a cure for the disease but, at the present time, there is none. Rather, the psychological phenomenon progressively ails the individual.
Some dementia sufferers receive long-term help in the form of professional or familial caretakers. The Upper East Side woman (who did not want to give her name), falls into the latter category and takes care of her 82-year-old husband, whom she once knew as a “brilliant” man.
The man’s decline in cognitive ability is indisputably troubling, and significantly affects his wife. “It’s upsetting. It’s terribly upsetting,” she says. “I find that it consumes a tremendous amount of my thinking and a lot of what I’m doing.”
Sixth Leading Cause of Death
Dementia can also distress loved ones because it worsens rather than improves. At the moment, the disease is the sixth leading cause of death for all adults in America. From diagnosis, the individual has approximately eight to ten years to live.
Witnessing the disease — which also manifests as Lewy body dementia and mixed dementia, among others — can be especially upsetting.
“The person is gone before they’re gone,” says the older caretaker. “There are two deaths. It’s not the same person. I’m not only talking about intellectual, cognitive things — I’m talking about behavioral and emotional ... I’m longing for my husband, I want my old husband.”
Like those they tend to, caretakers themselves experience major hardship. “It’s very difficult to deal with that,” the older woman continues. “Many times, I’ll go, ‘Gee, I have an issue,’ and I realize I can’t discuss it with my husband. Sometimes, the biggest issue is my husband,” she says with a pained chuckle.
“Daily life has been very hard,” she admits. “The first thing when I wake up in the morning, my first thought is: is he okay? I’m not in the same room with him anymore, and we’re married a very long time ...It’s a very changeable disease. It’s weird, in fact. It can be.
“There are days that are very good. Two days ago, I thought my husband was cured. I really did. And the next day, he wanted to sleep all day, and he went through a very long period where even the aides said he was the hardest case they had.”
In their compromised state, individuals with dementia take actions and make comments that they wouldn’t ordinarily. “What’s very hurtful, and what still goes on,” the older caretaker says, “is a lot of times I’ll come in and he will say, ‘Go away,’ and that really hurts.”
Zoom Support Group
The woman, who has been tending to her husband for the past several years, has been upset enough that she recently joined a Zoom support group. “Apparently, this is more common than I realize,” she says. “And they say, ‘Look, you know it’s not the person. It’s the disease speaking.’ But it still hurts. And as much as I try to say to myself logically, ‘This is not him,’ it hurts. Other times, he’ll say how much he loves me.”
In addition to the support group, the older caretaker receives help from aides who visit her home and tend to her husband. She says that, without such long-term care, her husband would “be finished,” echoing the sentiment that at-home care can be a bit warmer than facility care.
Veteran psychiatrist Dr. Alan Manevitz hears such stories of dementia often and treats the disease every day. Communication between family members of the sufferer “is critical,” he says and, sometimes, he organizes a group text so that everyone knows what’s going on. Still, the news can be grave.
“Shadows of their former selves,” descendants tell him of how their loved ones have retreated. “For families, the change in the loss of self ... because they can be physically healthy but are losing their memory and personality, and aren’t necessarily as funny ... becomes the most stressful thing as the person declines,” Manevitz says.
For him, the idea of elderliness as one’s golden years “is a euphemism.” It is “not really true,” he says. “Getting older is not ‘for sissies,’” he continues, quoting Betty White.
“You Have to Be More Kind”
A younger professional caretaker, who has been assisting a 92-year-old woman for over five years (and also did not want to share her name), is a bit more optimistic. “You’re dealing with someone whose memory is in a different state so you have to be more kind,” she says.
Her own mother had dementia and she takes a unique personal approach to the woman she cares for. She knows that, like her mother, the elderly woman confuses family members and feels crushingly lonely as they live their own lives.
“’Remember, they are grown up now and they have their professions and their work,’” she tells the woman. “And she’ll say, ‘Okay, the one good thing is that I have you and you have me,’” the caretaker says, her voice registering a decibel of solace.