Is This Dementia?

Concerned about a Loved One? Are you noticing Alzheimer’s or dementia or just normal aging?

At At The Helm, we are building a trail map for dementia caregivers. We are a website and support network that offers first-hand stories from fellow dementia caregivers and text-based caregiver coaching, all for free.

In this newsletter we highlight tough questions in the dementia caregiver journey. Today’s letter is for people who don’t yet know if they are dementia caregivers but are worried they might be.

Today’s Question: Is this dementia? What did dementia look like at the beginning? How did families know it wasn’t normal aging?

These are real stories from Anita, Jennifer, and Zach.

The Bottom Line: Normal aging involves changes. Dementia isn’t normal aging. Looking for help navigating your next step? Check out our early signs guide or connect to one of our caregiver coaches to chat through your questions for free via text.

It’s normal for people to change as they age. People briefly forget names or appointments. People need help with the remote or new technology. People have difficulty finding a word.

If you are noticing changes, a doctor can help you sort through your questions. It might be a condition you can treat or slow down.

My mother has always had anxiety. She took Xanax regularly. But in the summer of 2019, she stopped taking it. She was the most clear I’ve ever seen her. But, at the same time, she didn’t know what day of the week it was. She would tell the same story multiple times. She’d bring my kids the same present multiple times.

My maternal grandma and maternal great grandmother both had Alzheimer’s. So I’ve kept my eye on it.

On the way to a memorable event — a child’s funeral — she called me for directions. A week later, I asked her about the funeral and she said “I didn’t go.” I said “what do you mean, you were en route.” And she said “I forgot to go….no, it’s on Saturday, I’m going.”

Shortly after, I took her and my kids to a show. She got up to get popcorn. She left her purse and never came back. I walked around this arena, lugging our coats, her purse and the stroller. Intermission was over. I couldn’t find her. The security guards started helping us. Eventually we found her. She had sat down in a random seat. I was sweating. Panicked. I was angry. I said “why would you just sit down? Why wouldn’t you try to find me? Why wouldn’t you ask for help?” Now I appreciate that she didn’t have those problem solving skills. She responded with indifference. She said “I just thought this is where we were, so I sat down.”

I decided to guide her, not push her, to a diagnosis. She was reluctant. She was self-aware. I was assertive that we were going to the doctor. But I think I struck the right tone of not being too aggressive. She was understandably in denial and upset.

Three years ago I started keeping notes because I was afraid my husband had Alzheimer’s. He was 62 then and I had been noticing changes since he was 59. I didn’t want to push him to go to the doctor because I was afraid he’d lose purpose. And, since there is no cure, I didn’t know the purpose of diagnosis.

In the summer of 2017, we travelled to Europe, to a place we had never been. He was tired and he became very confused. He said “why did we go here? I have been here many times.” I told him “no Babe you have never been here.” He was so upset with me because I didn’t believe him. The next day he couldn’t remember the conversation. He seemed to be ok after that until we got to the next destination.

He woke up screaming one night not knowing where he was. When I reminded him where we were, he calmed down and was fine the rest of the trip. I was so scared for him and for me.

He began asking me 15 times a day — I counted — what time of day it is or what day it is. I didn’t want him to feel bad so I just answered. I bought a dementia clock. He loved it and he asked me the day and time less frequently.

He would have difficulty finding the right words for a sentence. He would stop in the middle of a sentence and not remember the correct words to use. I tried to help without trying to make him feel bad. I was worried if he realized he had dementia he would give up on life.

I’ve grown a lot as a caregiver. I decided early on to educate myself. There is all this generic stuff. But I want to know how is Rebecca dealing with it, how is Susan dealing with it, not some person who hasn’t been through it.

I am always trying to figure out — how are these people doing it? What is going to look like? I want to envision what is ahead of me.

After my nephew was born, my parents and I came to help out. My sister in law gave us instructions for what we had to do. My mother was getting really frustrated and doubled back on things that we had just discussed. I told her I could handle it alone.

Earlier that day, she had misplaced her glasses. We had all joked about the missing glasses. When we found them, she put them in her purse. Twenty minutes later she said she couldn’t find her glasses. We all laughed thinking it was a joke. But she didn’t remember that she had just lost her glasses and we had put them in her purse.

I think the glasses are an example of the ways that the patient and the family unconsciously cover. The previous Thanksgiving and Christmas, I had recorded the family telling stories. It took me several years to go through the videos. When I listened to them, I heard how much we were covering for my mom. We were finishing her sentences. Or she’d said “Why don’t you tell that story, you tell it better.”

I talked to my dad the day after the eyeglasses and the attempted babysitting incidents. I told him that I thought she was having memory problems. The next month she went in for a four hour neuropsychology evaluation. She got an Alzheimer’s diagnosis a month after that.

A lot of times, we had to repeat ideas many times until [my parents] came around to them. We couldn’t deal with our parents how we would deal with coworkers. We needed to get my parents acclimated to new ideas.

Now. Take Action.

Get 1–1 Help with a Free Text-Based Peer Caregiver Coach.

Get an Early Signs Guide to Take Action and Prepare to See a Doctor.

Or, Read More Stories about Caregivers Navigating the Early Signs.