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What Do You Fear Most About Alzheimer’s?

From the moment we first recognize the symptoms in ourselves or our loved ones, it’s difficult not to fear what lies ahead on the path of Alzheimer’s.

It’s a topic that many of you connect with, and to hear more about what you’re most afraid of, we reached out on the AlzheimersDisease.net Facebook page. We asked you to fill in the blank, answering: “I am most afraid of ____________.”

More than 50 of you responded, and nearly 40 of you commented.

Here’s what you had to say.

“My mother not recognizing me.”

One of the biggest fears is about our emotional connection to our loved one. For those whose loved one still recognizes them, it is heartbreaking to think about what will likely lie ahead. The good news is that recognition doesn’t fade at all once. It’s common for those with Alzheimer’s to have periods during the day of remembering and periods where they don’t. One positive way to look at it is that those without the diagnosis do not forget who the one with the diagnosis is. The love is certainly not lost, regardless of who may or may not remember it.

“Of my mother not recognizing me.”

“Of my mom not knowing who I am.”

“My grandfather when he didn’t recognize me a week ago.”

“I am afraid of losing the memories of those I love.”

Likewise, several of you with the diagnosis fear that you may one day lose the ability to recognize your loved ones — which is extremely difficult to accept. There are steps you can take in being proactive about connecting with your memories. Clearly labeled photos in your room or albums of photos with labels can help.

“I am afraid of losing my mind; my memories of who I am and who are those I love.”

“Of forgetting my family.”

“My mom dying.”

The hardest part of this disease is when it’s over. Even though life with someone with the later stages of Alzheimer’s is hard, of course we want our loved ones to stay with us. The good news is that many of you still have today, and much more time, left with your loved one. You can make the most of it by planning special little events or outings that perhaps he or she will appreciate — and that you definitely will.

“I am afraid of what will happen to my dad when my mom dies from Alzheimer’s.”

“My mom dying.”

“That I might follow in my mom’s path and end up with Alzheimer’s.”

Those of you who are caregivers to a parent with Alzheimer’s naturally worry that you may one day receive the diagnosis as well. Early-onset Alzheimer’s does have a higher genetic risk, but late-onset Alzheimer’s does not seem to be genetically linked. Still, this fear makes sense because any caregiver becomes intimately involved with what it takes each day to manage the disease. Anxiety is truly just fear about the future, so one solution may be to shift your focus to the present moment and remind yourself that today, you are absolutely fine.

“That I might follow in my mom’s path and end up with Alzheimer’s. It’s my nightmare that I will forget everyone I love. Plus I’ll forget everything about my life and how to do anything.”

“That I may go down the same road… I do not want to burden my family.”

“That I will be like my mom.”

“That I will probably have it later in life. My mother had it, and I was her caregiver along with my siblings. But I would do it all over again if I had to. We enjoyed every day we spent together until the moment she passed. I used to take her everywhere. We never hid it from her or anyone else.”

“I might have Alzheimer’s…”

It’s a hard place to be in to suspect you might have Alzheimer’s. If you want certainty, testing is available that could include physical and neurological exams, lab tests and brain imaging. As you likely know, if you do have Alzheimer’s, the upside of a swift diagnosis would be medicine. Medicine can treat cognitive symptoms. However, if you were likely going to treat it without medicine — using alternative therapies and a preventative diet — you certainly don’t need tests to take preemptive measures early.

“I might have Alzheimer’s…”

“I am afraid I will end up getting it.”

“Not knowing.”

“I am afraid I will get put in a nursing home.”

Several of you mentioned a fear of a nursing home, either for yourself or for a loved one. It’s natural to worry that the staff of a nursing home won’t give you or yours as much attention and care as family might. But, in any situation, anyone — be it family or staff — is doing the best they can. And, in life, hard choices need to be made. We all do what we believe to be right, and we’re all just aiming for the best possible outcome.

“I am now being treated for it. I am afraid I will get put in a nursing home at some point.”

“I’m afraid I will go first and my husband will end up in a nursing home for Alzheimer’s and they will forget him.”

We want to say thank you to the community for such a candid conversation about a vulnerable topic. It’s our hope that your shares bring the community closer together in support of one another.

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