In the early stages of my father’s Alzheimer’s, his eyes were usually veiled with fear. His face would tense up when he struggled to remember something or identify an object he was looking at. Sometimes he would say, “I have this thing…” It was heartbreaking.
In 2011, I started my support group program, Beyond Alzheimer’s, and I have now heard hundreds of stories that are both unique and achingly similar. One of the few constants of Alzheimer’s is that the early stages are the hardest. You watch as your loved one struggles with an inescapable reality – they are being pirated away piece by piece, and there is nothing they can do to stop it. The one mercy in the latter stages is that fear leaves their eyes. They settle into the distance they now inhabit.
Lingering at the most painful stage
For the first time since 2003, there is a new drug to treat Alzheimer’s. The FDA just announced that it will allow Biogem to distribute their drug Aduhelm under an “accelerated approval pathway.” Which, in layman’s terms, means they sped up the approval but more testing is required. The difference in Aduhelm is that, unlike Aricept and other drugs which treat the symptoms of dementia, this new drug targets the underlying cause – amyloid plaque. The buildup of amyloid beta plaque and tau, or tangles, in the brain causes the loss of neurons, which then results in dementia.
The news of this drug has been met with both celebration and cautionary warnings. The Alzheimer’s Association called it a victory, while many doctors have pointed out the serious potential side effects, such as swelling and bleeding in the brain. No one has touted it as a cure, but rather a more effective treatment for slowing the progression of the disease.
I would like to throw in another cautionary suggestion. Because Aduhelm is meant for people in the very early stages of dementia, people who have been diagnosed with Mild Cognitive Impairment, the point of the medication is to stall them at that point for as long as possible. I heard a man who participated in the clinical trial tell an interviewer that the drug can give people more time to live their lives, to work, to function in society.
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I don’t think it’s that simple. What if we are stalling people at the most painful stages of dementia, the stages when fear courses through them and they are grieving over the loss of who they once were? It’s something that families and loved ones need to consider.
Comfort in surrender to Alzheimer’s
It’s not my place, nor is it anyone’s, to offer advice on how to handle this decision. But it is important to look at the entire picture. It’s one of the many aspects of Alzheimer’s that distinguishes it from other diseases – that as it gets worse, the patient actually gets a bit more comfortable. They are no longer fighting the mysterious force that’s stealing them away. They’ve surrendered to it and found someplace far away from the rest of us, a place that has become their new home.
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Being a caregiver for someone with Alzheimer’s is a journey weighed down by grief and a constant pull of uncertainty. You don’t know when the disease will worsen, or in what ways. So, when a drug comes out that promises some respite, it’s a given that caregivers will want it for their loved ones. But sometimes the most valuable thing we can do is take a step back to get a wider view.
Is this moment in time where you want your loved one to linger? No one else can answer that for you, but the question needs to be asked.
Patti Davis (@patti_davis ) is the author of two books about Alzheimer’s disease, 2011’s “The Long Good-Bye” and “Floating in the Deep End: How Caregivers Can See Beyond Alzheimer’s,” to be published in September. Her most recent book is the novel “The Wrong Side of Night.”