I write from experience. Earlier this year, I mentioned in a magazine my wife Laurie’s trip, called a minor-abnormal Alzheimer’s disease – when the disease affects anyone under the age of 65 – her diagnosis began at 56 and ended seven years later. Was. Death, in March 2019. The article stimulated feedback from readers, many of whom spoke of their own harsh encounters with the disease. The fear, heartbreak and despair they described reminded me of my own reactions, one after another, to Alzheimer’s taking my wife. But strangely enough, it was also fun to hear from them. For Alzheimer’s and other forms of dementia the long process of losing a loved one can be a personal, separate experience. There was a community of other people who knew who had suffered the same grief that I feel less alone.
Going to me in particular was one of the closest stories of demented loved ones who ended their lives. “It has a huge impact on family and friends,” said Hinda, an affiliate at Harvard Medical School, and Dr. Hebrew, a senior scientist at the Arthur Marcus Institute for Aging Research. Says V Lvro Pascal-Leon, medical director of the Hebrew SeniorLife Center for Memory Health. This is especially the case for those who take primary care of the patient. Their roles as spouses become something completely different from being a spouse, son or daughter. It’s a role they’ve never sought but one they can’t avoid. And as much as Alzheimer’s torments the minds of those who suffer from it, it also destroys the lives of caregivers.
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Initially, there is a fundamental fear of strangers to the caregiver. Most new diagnoses seem a little different from their original self. Many are still working, some can still drive. Conversations – perhaps not as scintillating as before – can still take place. But storm clouds appear.
Mona (I’m just using the first name to protect the authors’ privacy) told me that her sister had been diagnosed. “Still, she’s our sister right now and knows us and still has the essence of it. I can’t wait for that to go away. ”
Polly wrote that her husband “was in the early stages of this challenging disease. . . . I appreciate what my husband has, ”she said, however, as he watched anxiously for years to come.
Susan’s husband was diagnosed with dementia at an early age. “To be honest, too much for my next sorrow,” she recalls, “I was just annoyed at first that it wasn’t working properly.” Later, when I learned of the diagnosis, I panicked. “
Gustavo, whose mother was in the early stages of Alzheimer’s, said, “I hate feeling so powerless.”
“Powerless” is especially appropriate. As with most diseases, there is a feeling that cure or at least remission is possible. Not with Alzheimer’s. When I hear from people who were in the early months and years of dealing with this disease, I will always write back. But in truth I should advise that there was nothing but something that didn’t feel right – “Be strong,” “Reach out to family and friends.”
All true, I believe, but whatever, I knew, would not avert further pain.
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Eventually the disease increases and the demand for caregivers increases. Many struggle to maintain their lives; Others have been forced to hold back their lives. The stress can be overwhelming. Caring for someone else 24/7 is hard and often relentless work, with the hope that the effort will yield some kind of recovery. Nicole McGuiren, director of family services at the Alzheimer’s Association’s Massachusetts / New Hampshire chapter, says Kergiver “lives two lives at once” – his own and the patient’s. It can be especially difficult for spouses. “Sadness and fear mark their days. There is a lot of uncertainty, not just about the end point, but about how it will progress. In the meantime, they mourn the loss of their spouse, before he or she leaves. Every new loss in cognitive abilities brings new sorrow. ”
I remember it well. One day, I suddenly realized that my wife could no longer write. I adjusted myself to it, sadly and then reconciled with the new normal. A few months later, she no longer knew who my mother was, and the grief flared up again.
The clinical director of the Memory Disorder Assessment Clinic at McLean’s Hospital, Dr. “The life they once envisioned also cares for the loss of life,” says Julie Brody Magid. “I hear that from people in their 40’s, 50’s and 60’s. Some of them are about the loss of a life plan “- career, travel, shared moments -” as well as the loss of their spouse. ‘We talked to each other about the kids, about our home, running things.’ That reciprocity changes permanently. Physical intimacy often changes or simply disappears. “
Colin’s husband, Chris, was diagnosed with dementia at age 55. The couple still had a young son at home. “I miss our lives. I quit my job to take care of her. We have sold our house but can rent a house nearby. “We try to make things as simple as possible for our 12-year-olds. There is so much laughter in our house. As time goes on we see less of our friends. With each change my heart becomes a little more sad. . . . I know what’s coming. “
“Husband was diagnosed more than five years ago who diagnosed her,” Mardi wrote, “has to dig deep every day to keep things positive and sharp.” “She struggles to find and validate that” life is better and love prevails. “
For others, though – including myself – taking care of the house becomes too much. They find some other remedy. Sometimes it can be adult care, spending the night back home with the patient. But, as needs grow, many seek a full-time solution. For those with money, that could mean 24-hour, home care. For most people, though, that 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 low onset Alzheimer’s. “He is currently at home, but we are looking forward to seeing long-term care facilities. I may not be able to keep him at home any longer and be afraid of the procedure,” he said.
Really. The guilt of sending a “goodbye” can be almost unbearable. “Tomorrow [my wife] “Probably going to a ‘meeting’ at a memory care facility that will probably be her new home,” Chris wrote. “My heart is breaking.”
McLean’s Brody Magid said that all of this stress falls on the mental and physical health of caregivers. “They develop a range of medical problems; They often struggle with frustration and anxiety. The disease effectively becomes another victim. In fact, one study found that 1 in 5 Alzheimer’s spouse caregivers care, they care a lot, because caregivers are ignoring their own needs.
Moreover, dementia is not the only reason to lose memory. It can dramatically – and sometimes scary – change behavior. “Personality changes,” Brody Magid continues. “People with dementia may have memory disorders that increase paranoid delusions. They don’t understand why one of their belongings went from one place to another, so they assume someone stole it. They may fail to identify their spouse or children, thinking they are experimenters. People with dementia can become aggressive and socially incompetent. “
Paula’s husband, a police officer, “got into so much trouble that I was afraid to be alone with him at home.” Eventually she put him in a memory care facility. “I have never had such a crime in my life! I always told her I would keep her with me but now she was not safe. “
Ellen had a similar experience, seeing her mother change before her eyes. “She’s wasted so many bad times, she calls us and her comrades ‘Jacques,’ ‘Stupid,’ ‘Dum-Dum’ and often swears at us. It’s her own cruel frustration that causes this aggression.” It takes patience to see. Some days it’s easy to find love and compassion, the next day it’s hard to understand. “
The disease also takes a financial toll. To be a caregiver who has quit their job, it is difficult to manage the blow of income. Even the cost of home, adult care, or post-residential care. Sadly, traditional health insurance does not usually cover the cost of caring for a person with dementia. Long-term care insurance can help, but it is expensive and, when you know you need it, the insurance company will not sell it to you. And government-paid care – such as Medicaid – is usually only for those who have almost no resources.
Well, of course, there are more care options. But “in-mediators” – as McGurin of the Alzheimer’s Association, calls them – are few.
“We are just trying to take care of the long term [my mother], “Celeste wrote,” and is surprised by the cost – 10,000 a month – which we can’t afford. . . We should try to figure something out. Someone of your love disappears before your eyes and then it seems like there is no cheap support or no compromise.
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The epidemic has only made an impossible task more impossible. “Even in the best of times, we struggle with carrying and getting support for carrying,” says Pasquel.
Leon. “During Covid-19, it is more difficult to get that support. The feeling of loneliness and isolation is growing and it has gotten worse. Video conferencing is challenging for people with dementia. During the shutdown, out-of-home options – such as adult care – were unavailable. And people who know how to properly put a loved one in institutional care run the risk of catching COVID-19.
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And then there is the end.
Charles wrote about his wife, “I don’t know what was hard.” When she doesn’t know who I am, or when she recognizes me, but only for a few seconds. . . . As a clinical psychologist, I know that I am struggling with anticipatory grief. She’s at the inn now (because she doesn’t eat) and logically I know what was once ‘intimate’ is now running towards her – and me. There are days when it’s not the ‘expected grief’, but I’m in a tsunami of anger and confusion and resentment. “
Who wrote about her mother: “It was as if she was being emptied, being emptied. It was a constant, ruthless and aggressive attack. ”
“It was like a long tunnel,” recalls Edward, his wife’s Alzheimer’s. Living one day at a time became mandatory. ”
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After all this, what?
It is threatening to say that there is a “right” way to deal with Alzheimer’s disease. Every family situation is unique; Each of us has our own journey. But the constant message from devotees who see the disease every day is that caregivers and other loved ones should not feel alone. Pacquiao-Leon argues that a gift that is a caregiver is not only a burden, but can also be a “gift” that benefits not only the sufferer but also the caregiver. That’s right, I’ve come to believe: because it’s about caring for others that we as human beings can sometimes feel our greatest potential.
This is not to say that the caregiver often does not feel alone, however, that the task is not hard or frustrating. Indeed, the role of the caregiver can all come into play. Sometimes I felt like this was the only thing I could think of, not sure after my lifetime.
“Despite the grief and loss, we move on,” wrote Maria, whose husband died of Alzheimer’s.
Philip, hearing the voice of the positive Belichician, observes, “It is not our life, it is the life we get.”
And Joan wrote that she was “saddened by the years of illness, I found it difficult to remember my bright, dynamic, kind husband. How many times have I wished you had had cancer instead of dementia. But then he added, “It’s a blessing and a curse to lose my spouse with dementia, because I’ve expressed my loss throughout the illness, so I prepared for a new spouse just before my husband died.” He admitted that he “feels extremely guilty.” Yet, she said, “The new love does not diminish your love in any way.”
Like John, after I lost my wife Laurie, I started dating. To my surprise, I fell in love. Three months ago, we got engaged. Karela will not be able to replace Lurie; She never wanted to. But everyone who has always had another child knows that love is not a zero sum game. Every day, I think about Laurie and mourn. Every day, I think and cherish Carla.
Get help: The Alzheimer’s Association has a 24-hour helpline that provides resources, care managers and advice. It can be reached at 800-272-3900.
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Tom Keane is a frequent contributor to this Globe Magazine. Send comments to magazineિનglobe.com.
