By: Jerry Grimes
“At first, you remember everything. You remember the person you were, the things you knew, and did…your independence. And then you know, with absolute certainty, that you are losing it all.”
— Peter, a Chapin resident with Alzheimer’s
“The little things slipped away first—names, dates, why I’d walked into a room. I laughed it off at first, and blamed age or stress. But the moments of confusion grew longer. One afternoon, I got lost driving home from the grocery store, a route I’d taken for twenty years. That’s when I knew.” Those were the intimidating thoughts that 67 year old Peter recorded in his journal last summer. “When the neurologist told me it was Alzheimer’s, my wife squeezed my hand so tightly, it hurt. I think she was trying to hold me in place like if she gripped hard enough, she could keep me from slipping away,” he said in the journal.
Alzheimer’s is undoubtedly one of the cruelest diseases. It is reaching epidemic levels among individuals as young as 45, impacting more than 6.7 million people in the United States, including over 122,000 in South Carolina. These numbers are projected to double in the next ten years.The disease can distort, weaken, and destroy the bonds between parents and children, wreck marriages, and create mental anguish for its victims and their families.
“The first time my father forgot my name I told myself it was nothing. Just a bad day. He had plenty of good ones, days when he was still sharp, still himself. We clung to those days like lifelines,” Carla, one of Peter’s daughters, said.
But Alzheimer’s is patient. It steals in small, quiet ways before it takes everything.
At first, adjustments can be made to cope. Leaving notes around the house to remind Mom or Dad about basic things. Then the notes aren’t enough. You start labeling cabinets, then clothes and personal items. Eventually, the labeling stops. What is the point when they no longer recognize their name? Families and patients alike say the worst part of Alzheimer’s isn’t forgetting. It’s the fear. “The frustration in his eyes when he couldn’t find the words, the anger when we had to help him with simple tasks; the moments of clarity, when he realized what was happening, were the cruelest of all,” Carla states. “There were times I got angry too. I hated myself for it. But there is a special kind of exhaustion that comes with loving someone who is disappearing before your eyes. You grieve for them while they’re still here.”
And then, one day, they’re not. On average, individuals with Alzheimer’s disease live around 8 to 10 years after diagnosis, although some live for 15 or even 20 years, and the duration can vary significantly based on individual factors, including lifestyle choices like good nutrition and daily exercise. What could cause a normal, healthy person’s brain to misfire and keep misfiring until their identity, their humanity, simply fades away? Dr. Douglas R. Sinclair of Lexington Medical Center says we really don’t know what causes Alzheimer’s, but we do know why its vicious attack on a person’s gray matter causes these problems. “The problem is we do not know why it happens. At autopsy we will see collections of proteins in the brain called amyloid plaques, we will also see collections called neurofibrillary tingles made up with TAU protein,” he explained. The plaques block neuropathways, and every function that makes us alive is dependent on the pathways.
Want to remember your wedding? The link to that file is blocked. Need to recall someone’s name? Sorry, the route to take for that is clogged, and there is no detour. “In each individual person, different parts of the brain are affected in different order or intensity, so symptoms can differ from patient to patient,” Sinclair said.
Dr. Sinclair said many people confuse Alzheimer’s with dementia, and the two terms cannot be used interchangeably.
Alzheimer’s is a form of dementia, but there are many others, including vascular, Parkinson’s dementia, Lewy body dementia, frontotemporal dementia and more. “When you say Alzheimer’s, or Alzheimer’s dementia, you are being specific about the kind of dementia. It is much like saying that you drove here today in a car, but we would have no idea if you came in a Cadillac or Toyota,” Dr. Sinclair said. Just as there is no known cause of Alzheimer’s, no one knows how to prevent it, but what doctors have found is that people who eat healthy foods, get regular exercise, hydrate and sleep well seem to be doing better than those with unhealthy habits.
You may worry that you have Alzheimer’s because you are older and forget some things, but early signs of the disease and issues from aging are very different. Alzheimer’s has more severe memory issues than those that crop up with normal aging, such as forgetting recent conversations and events entirely, struggling with familiar tasks like making coffee, or misplacing items in odd locations, like finding keys in the fridge. It is marked by being unable to retrace steps. Additionally, while normal aging may lead to occasional poor decisions, those with Alzheimer’s often experience a significant decline in judgment, such as giving away large sums of money or becoming confused about time and place. Personality and mood changes are also common, with individuals withdrawing from social activities or displaying increased confusion and paranoia.
Scarlett Sanders, Operations Director for Cornerstone Caregiving, sees firsthand how the disease impacts many of her clients. Alzheimer’s patients often forget to bathe, eat, perform common daily tasks and most alarmingly, remember to take medicines. “We’re here to help with all the things clients need, plus we provide companionship and even a little light housekeeping or meal prep,” Sanders said. Most people who use a service like Cornerstone are caregivers who live full-time with their Alzheimer’s patient, such as a spouse, child or close relative. “Sometimes there is someone who helps but can’t do it full-time and they just need us to check in daily and make sure their loved one is okay,” Sanders added.
In-home care can be more affordable than a memory care facility in most instances, but not all insurance plans, including Medicare, cover the entire cost. Some veterans are able to receive in-home care through their VA benefits. Sanders said there are six daily activities (getting out of bed, eating, bathing, dressing, transferring to a chair and walking) and evaluation criteria to assist with determining the extent of homecare. Having difficulty with two or more of the tasks warrants a need for services and resources to be further explored. But when it comes to what services are needed, one size does not fit all, she added.
“Different patients need different care. How Alzheimer’s affects them will depend on their personality, their overall health and other factors. There is no ‘normal’ with this disease,” Sanders explained. Cornerstone’s standard fee is $30 per hour, which, on a weekly basis, is close to what many facilities are charging. It’s the personal touch that makes in-home care so attractive to many families. “Letting the patient stay right there in familiar surroundings, close to family and friends, getting individual attention is very appealing to the families we work with,” she said. Supplemental assistance for families affected by Alzheimer’s can be accessed through the South Carolina Department on Aging, which provides caregiver resources. In addition, Leeza’s Care Connection supports caregivers with free activities and respite programs.
Living with Alzheimer’s sadly means dying with Alzheimer’s. As bleak as that may sound, there are rays of hope on the horizon, Dr. Sinclair said. “The study of Alzheimer’s disease is changing on a constant basis,” he shared. “Until recently doctors could only truly confirm someone was an Alzheimer’s victim postmortem in an autopsy. Testing has come a long way, so today’s patients and families at least know what they are dealing with.” And there are advancements in treatments as well, some of which are becoming more and more effective at preventing the progression of Alzheimer’s. “Within the past year, new medications that specifically try to rid the brain and body of the amyloid that builds up. These are monoclonal antibodies. So far, they are only recommended for people with an “early” stage of disease,” Sanders said.
When your loved one’s Alzheimer’s journey comes to an end, you may be left with painful memories and filled with grief not only for the loss of someone you loved, but also grief for the years that they had to live as only a portion of who they really are, families told us. And yet, Alzheimer’s can bring families together like nothing else. “Looking back, I realize Alzheimer’s didn’t just take from us—it also gave,” Regina, Peter’s daughter, shared. “It forced us to slow down, to cherish the small moments. The times he still laughed at my jokes, still reached for my mother’s hand, still hummed an old song, even if he didn’t know the words anymore.”
While Alzheimer’s remains a devastating disease, medical science is making progress on many fronts, Dr. Sinclair indicated. The increased focus on early detection, genetic research, and immunotherapies offers real hope that we may one day find a cure or at least a more effective treatment.
For now, the key is early diagnosis, symptom management, and providing support for families. As researchers continue to uncover more about the biology of Alzheimer’s, many researchers are optimistic that we will have more effective tools soon to stop the long goodbye journey before it even begins.
