People who had also lost loved ones to dementia wrote to me in droves, showing me the importance of community.
Alzheimer’s disease creeps up slowly. A spouse or parent misplaces the car keys. They forget the PIN to the ATM. They get lost taking a walk, struggling to find their way home. First dismissed as nothing — a “senior moment” if you will, something that happens to everyone — quiet suspicions build. A visit to the doctor is arranged. The news comes back. It’s dementia.
And one looks into the abyss. Of the millions who have had Alzheimer’s dementia — more than 5 million Americans are living with it now — none has ever recovered. But it is the path toward death that feels especially tragic. The victim becomes increasingly frail and dependent, unable to manage even the simplest tasks of everyday living — cooking, bathing, toileting. Worse, one of the people you love most in the world — a partner, friend, sibling, or parent — disappears before your very eyes.
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I write from experience. Earlier this year, I recounted in the magazine the journey of my wife, Laurie, through what’s called younger-onset Alzheimer’s — when the disease strikes someone under 65 — a journey that began with her diagnosis at age 56 and ended seven years later with her death, in March 2019. The article provoked an outpouring of responses from readers, many of whom told of their own harrowing encounters with the disease. The fear, heartbreak, and even despair they described reminded me of my own reactions as, bit by bit, Alzheimer’s took my wife. But in an odd way, hearing from them was gratifying, too. The long process of losing a loved one to Alzheimer’s and other forms of dementia can be a deeply personal, isolating experience. Knowing there was a community of others who bore the same hurts made me feel less alone.
Particularly moving to me were the stories of those closest to loved ones afflicted with dementia, who found their lives upended as well. “The impact on family and friends is huge,” says Dr. Alvaro Pascual-Leone, senior scientist at the Harvard Medical School affiliate Hinda and Arthur Marcus Institute for Aging Research, and medical director for Hebrew SeniorLife’s Center for Memory Health. That’s especially the case for those who become the patient’s primary caregiver. Their roles in life shift from being a spouse, son, or daughter to something entirely different. It’s a role they never sought but one they can’t avoid. And as much as Alzheimer’s ravages the minds of those afflicted with it, so too does it ravage the lives of caregivers.
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Early on, for the caregiver there is a basic fear of the unknown. Most of the newly diagnosed seem only slightly different from their original selves. Many still work, some can still drive. Conversation — perhaps not as scintillating as before — can still be had. But the storm clouds are visible.
Mona (I’m only using first names to protect the writers' privacy) told me her sister had just been diagnosed. “Still, for now, she is our sister and knows us and still has most of her essence. I am not looking forward to that going away.”
Polly wrote that her husband was “at the early phases of this challenging disease. . . . I appreciate what my husband still has,” she said, even as she looked forward anxiously to the years to come.
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Susanne’s husband was diagnosed with younger-onset dementia. “To be truthful, much to my later sorrow,” she recalled, “at first, I was just irritated that he wasn’t acting correctly. Later on, when I knew the diagnosis I went into a panic.”
“I hate feeling so powerless,” said Gustavo, whose mother was in the early stages of Alzheimer’s.
“Powerless” is particularly apt. With most diseases, there is a sense that a cure or at least a remission is possible. Not so with Alzheimer’s. When I heard from those who were in the early months and years of dealing with the disease, I’d always write back. But in truth I had little to offer up aside from what seemed like trite advice — “Be strong,” “Reach out to family and friends.”
All true, I suppose, but none of which, I knew, would avoid the pain ahead.
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Eventually the disease progresses and the demands on caregivers grow. Many struggle to maintain their lives; others are forced to place their lives on hold. The stress can be enormous. Caring for someone else 24/7 is hard and often unrewarding work, with no hope that the effort will be rewarded with some sort of recovery. Caregivers are “living two lives at the same time” — their own and that of the patient, says Nicole McGurin, family services director at the Massachusetts/New Hampshire Chapter of the Alzheimer’s Association. It can be especially difficult on spouses. “Sadness and fear mark their days. There’s a lot of uncertainty, not just about the end point, but about how it will progress. Meanwhile, they are grieving for the loss of a spouse, well before she or he is gone. Each new loss in cognitive abilities brings new grief.”
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I remember it well. One day, I suddenly realized my wife could no longer write. I adjusted myself to that, grieving and then reconciling to a new normal. A few months later, she no longer knew who my mother was, and the grief bloomed anew.
Caregivers also grieve for “the loss of the life they once envisioned,” says Dr. Julie Brody Magid, clinical director at McLean Hospital’s Memory Disorders Assessment Clinic. “That’s what I hear from folks in their 40s, 50s, 60s. Some of it is about the loss of a life plan” — careers, travel, shared moments — “as well as losing their partner. ‘We used to talk, run things by each other about children, about our home.’ That reciprocity is permanently altered. Physical intimacy is often changed or may simply be gone.”
Colleen’s husband, Chris, was diagnosed with dementia at age 55. The couple still had a young son at home. “I miss our life. I left my job to care for him. We sold our home but are able to rent a home close by,” she wrote. “We try to make things as normal as possible for our 12-year-old. There’s lots of laughter in our home. As time goes by, we see fewer of our friends. With each change my heart becomes a little more sad. . . . I know what’s coming.”
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“I have to dig deep every day to keep things positive and on an even keel,” wrote Mardy, whose husband was diagnosed more than five years ago. She struggles “to find and validate over and over that life is good and love prevails.”
For others, however — myself included — the work of at-home caregiving becomes too much. They seek out some other solution. Sometimes that can be adult day care, with the patient spending the night back home. But as the needs grow, many seek a full-time solution. For those with the money, that perhaps can mean 24-hour, in-home care. For most, though, it means moving their loved one to a memory care facility or a nursing home.
Nikki wrote that she was starting to look in that direction. Her husband has younger-onset Alzheimer’s. “He is currently home,” she said, “but we are in the process of looking at long-term care facilities. I may not be able to keep him home much longer and dread the process.”
Indeed. The guilt of “sending someone away” can be almost unbearable. “Tomorrow [my wife] goes for her ‘meeting’ at the memory care facility that will likely/hopefully become her new home,” wrote Chris. “My heart is breaking.”
All of this stress directly impacts caregivers' mental and physical health, says Brody Magid of McLean. “They develop a range of medical problems; they frequently struggle with depression and anxiety. The disease in effect claims a second victim.” In fact, one study found nearly 1 out of 5 Alzheimer’s spouse caregivers predecease those they care for, often because the caregivers are ignoring their own needs.
Moreover, dementia doesn’t just cause a loss of memory. It can exert dramatic — and sometimes scary — changes in behavior. “Personalities change,” Brody Magid continues. “People with dementia can have memory distortions that fuel paranoid delusions. They can’t understand why one of their belongings moved from one place to another, so they assume that someone stole it. They may fail to recognize their spouse or children, thinking those people are imposters. People with dementia can become aggressive and socially inappropriate.”
Paula’s husband, a police officer, “got so combative that I was afraid in my own house to be with him alone.” Eventually she placed him in a memory care facility. “I have never had so much guilt in my life! I always told him I would keep him with me but now it wasn’t safe.”
Ellen had a similar experience, watching her mother change before her eyes. “She has gone through periods of being darn right nasty, calling us and her aides ‘jackass,’ ‘stupid,’ ‘dum-dum’ and often swatting at us. It takes patience to see it’s her own brutal frustration that causes these outbursts. Some days it’s easy to find love and compassion, other days it’s hard to understand.”
The disease also takes a financial toll. For those who have to leave their jobs to become caregivers, the hit to incomes is hard to manage. So too is the cost of care, whether it’s in-home, adult day care, or residential. The sad truth is that traditional health insurance doesn’t typically cover the costs of caring for someone with dementia. Long-term care insurance can help, but it’s expensive and, by the time you know you need it, the insurance company would no longer sell it to you. And government-paid care — such as Medicaid — is usually only for those with almost no resources.
The well-off, of course, have more care options. But the “in-betweeners” — as the Alzheimer’s Association’s McGurin, calls them — have few.
“We’re just now trying to figure out long term care for [my mother],” wrote Celeste, “and are shocked by the cost — $10,000 a month — which we can’t afford but . . . it’s what we have to try to figure out somehow. It’s cruel to slowly watch someone you love disappear before your eyes and then feel like there’s no affordable support or solution.”
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The pandemic has only made an impossible task more impossible. “Even in the best of times, we struggle with caregiving and with getting support for caregiving,” says Pascual-
Leone. “During COVID-19, that support is even harder to get. The sense of isolation and loneliness has grown and become even worse.” Videoconferencing is challenging for those with dementia. During the shutdown, outside-of-the-home alternatives — such as adult day care — were unavailable. And folks rightly fear the risk of catching COVID-19 by placing a loved one into institutional care.
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And then there’s the end.
“I don’t know which has been harder,” Charles wrote about his wife, “when she doesn’t know who I am, or when she recognizes me but only for a few seconds. . . . As a clinical psychologist, I recognize I am struggling with anticipatory grief. She is now on hospice (because she does not eat) and rationally I know that what was once ‘imminent’ is now rushing at her — and me. There are days it is not ‘anticipatory grieving’ but I am in a tsunami of anger and confusion and resentment.”
Jane wrote of her mother: “It was as if she was being hollowed out, emptied. It was an ongoing, relentless, and aggressive attack.”
His wife’s Alzheimer’s, recalled Edward, “was like a long tunnel. Living a day at a time became mandatory.”
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After all this, what?
It’s presumptuous to say there is any “right” way to deal with Alzheimer’s disease. Each family circumstance is unique; each of us has our own journey. But the consistent message from the folks who see the disease every day is that caregivers and other loved ones do not have to feel alone. And being a caregiver is not just a burden, but can also be a “gift,” argues Pascual-Leone, a gift that benefits not only the one suffering from the disease but the caregiver, too. He’s right, I’ve come to believe: For it is in caring for others that we can sometimes realize our greatest potential as human beings.
That’s not to say a caregiver doesn’t often feel alone, however, nor that the work isn’t hard or disheartening. Indeed, the role of caregiver can become all-consuming. Sometimes I felt as if it were the only thing I could think about, not sure of the course of my life afterward.
“Despite the grief and loss, we move forward,” wrote Maria, whose husband died from Alzheimer’s.
Philip, sounding positively Belichickian, observed, “It’s not the life we want, it’s the life we get.”
And Joan wrote that she “felt so overwhelmed by the years of the disease, that I found it hard to remember my bright, vibrant, kind-hearted husband. I can’t tell you the number of times I wished he had cancer instead of dementia.” But then she added, “The blessing and curse, for me, of losing my spouse to dementia is that, because I grieved my loss throughout the illness, I felt ready for a new partner even before my husband died.” She admitted that made her “feel incredibly guilty.” Yet, she said, “New love does not in any way diminish the love you had.”
Like Joan, after I had lost my wife, Laurie, I began dating. Much to my surprise, I fell in love. Three months ago, we got engaged. Carla can’t replace Laurie; she never would want to. But as everyone who’s ever had a second child knows, love is not a zero-sum game. Every day, I think about and mourn Laurie. Every day, I think about and cherish Carla.
GET HELP: The Alzheimer’s Association has a 24-hour Helpline, offering resources, care managers, and counseling. It can be reached at 800-272-3900.
This piece first appeared in the November 1, 2020 edition of the Boston Globe Sunday Magazine and be found on-line at this link.