Alzheimer’s Disease Caregivers Reveal What It’s Really Like to Watch Someone Disappear
Alzheimer’s disease impacts millions of Americans’ lives each year, but this goes beyond those diagnosed with it. The caregivers of those people — especially loved ones, like their spouses and children — also go through various stages of grieving and hardship.
This brain disorder causes a slow decline in cognitive and physical health, and though scientists are trying, there isn’t anything they can do to reverse it. Therefore, once someone receives a diagnosis, there’s nothing their loved ones can do except prepare for the tough road ahead. Here’s what they can expect.
1. At first, the signs are subtle
Unfortunately, even the early warning signs of Alzheimer’s disease can be difficult to detect. For awhile, it might seem as if everything’s fine. This is why a new diagnosis can feel so jarring — for both the person recently diagnosed and the people they love.
Next: Forgetfulness isn’t a normal part of getting older.
2. They’ll start losing things around the house
Alzheimer’s interferes with a person’s memory, and the deterioration of those brain areas starts out slow. This manifests in a variety of ways, such as forgetting where they put their keys — even if they’ve kept them in the same spot for years.
Next: This type of memory trouble might seem normal — but it only gets worse.
3. They’ll begin forgetting names of people they just met
Something else you’ll notice, in the early stages of the disease, is how difficult it becomes for your loved one to remember details of things that happened recently. They’ll struggle to recall what they had for breakfast that morning, for example, or fail to remember the name of the new neighbor they just met.
Next: Things will start sounding a little too familiar.
4. You’ll have the same conversations with them, word-for-word
Because Alzheimer’s causes memory problems even in its earliest stages, you might notice your loved one initiating the same conversation each time you see them. It might even seem like they’re reciting the same words and phrases each time, like they’ve rehearsed it.
Next: You might also hear some familiar stories from “the good old days.”
5. They’ll talk a lot about their childhood
As short-term memory fades, people living with Alzheimer’s will often rely on their long-term memories to engage in conversation. Even if you heard their stories hundreds of times growing up, you’ll likely hear them more often, many times.
Next: Eventually, even those memories will fade.
6. They’ll forget crucial details about themselves
When someone asks for your name, address, or phone number, you usually won’t have too much trouble providing that information. People living with Alzheimer’s disease will. They might start to forget bits and pieces of the past, not just things that happened in recent weeks.
Next: It isn’t quite denial, but it’s still extremely heartbreaking to witness.
7. They might still believe they’re totally healthy
As Alzheimer’s progresses, a person’s awareness of their surroundings tends to diminish. Your loved one might talk about driving, mowing the lawn, or going to the store — things they can no longer do on their own, though, in their mind, they still can.
Next: “Ignorance is bliss” has a whole new meaning here.
8. You’ll occasionally have to lie — but it’s for the best
The more you can avoid upsetting a loved one who is already confused, the better. There will be times when the truth — your spouse is no longer with us, for example — could hurt more than a lie — he’ll be back in a little while.
Next: Cherish the special moments, because they won’t be able to.
9. They’ll lose many of the special memories you shared
As cognitive decline advances, people living with Alzheimer’s disease won’t be able to remember the major life events you shared together, such as birthdays, fun vacations, or weddings. Even if they don’t remember, telling them stories about those moments might make certain you never forget.
Next: They might even tell a few lies of their own.
10. Sometimes, they claim to remember things they don’t
Increasing memory problems aren’t just frustrating for you — they’re also devastating for your loved one. There will be times they don’t remember events or people you’re discussing, but they’ll pretend they do, just to make things easier for the both of you.
Next: No matter how close you are to them, this devastating thing will eventually happen.
11. They’ll slowly start to forget you
The faces of close friends and relatives are usually the last to fade when someone with Alzheimer’s experiences advanced memory loss. But there will come a point after which they’ll stop remembering the things you tell them, and what they mean to you.
Next: Along the way, you’ll get glimpses of who they used to be.
12. Every now and then, they become their ‘old selves’ again
Occasionally, people living with Alzheimer’s seem to momentarily emerge from their symptoms as if nothing happened. These “lucid moments” are more common in earlier stages of the disease, and happen less frequently as the disease progresses.
Next: No matter how much time you spend with them, you’ll still have unanswered questions.
13. You’ll realize you’ll never truly understand what it’s like to live with Alzheimer’s
Despite caring for someone with the disease, you’ll never be able to fully understand exactly what they’re going through. The same way you can’t understand what it’s like to have cancer or depression unless you’re going through it yourself, the best you can do is be supportive, even if you can’t fully empathize.
Next: This is probably one of the hardest parts about caring for someone with Alzheimer’s.
14. Patience becomes the best way to love them
When frustration sets in after you’ve repeated the same instructions a dozen times, it’s normal to feel overwhelmed. It may never become easier to have patience when caring for someone with Alzheimer’s, but it does often become a new way to show your love for them.
Next: At the end, this is the only thing you can really do to help them.
15. When all else fails, ‘being there’ is always enough
When the diseases progresses to the point of total disorientation, you might start feeling helpless. Even though it might seem like there isn’t anything you can do, the concept of “just being there” can go a long way.
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