Jul 22, 2011

Alzheimer's is hard to Diagnose, the typical Personal Care Doctor would not be able to Diagnose Dotty Today

I believe that Dotty is better today than she was 8 years ago. All of this in spite of the fact that all of her short term memory is gone

By +Bob DeMarco 
+Alzheimer's Reading Room

I am pretty sure that when most people think about Alzheimer's they think memory loss. I doubt that many people think behavior.

What do Alzheimer's caregivers think is more important? Memory loss or behavior?

Some of you will be surprised to learn that most of my focus as it pertains to my mother, Dotty, has been on behavior (and quality of life).

There are two reasons why this happened. The most noticeable early change in my mother was her slow slide into negativity and then into meanness.

I knew something was wrong because she was becoming increasingly negative. The other symptom that was most noticable was her gait and balance. Dotty started scrapping her feet on the ground. Then before I knew she could no longer walk the equivalent of a city block.

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This might surprise you. I was here in Delray Beach for more than a month before I learned that Dotty couldn't walk a long distance. I took her to the fire works on New Years Eve. We had too walk about three blocks to get into the fireworks. In less than a block, Dotty started to go down. Fortunately, I was holding her hand and I put her down gently. To my shock, she couldn't help herself. She couldn't get up even with my assistance. I realized that she would be unable to walk back to the car. So I had to sit her down, run back and get the car and then get her up and into the car. The year before we went to the fire works without problem.

This scenario repeated itself again when I took Dotty to the Mall. We made it into the Mall. Did some shopping and then all of a sudden Dotty couldn't walk. I couldn't get a wheel chair so I used one of those shopping carts that has a seat on the front for a kid. I put her on the seat, held on to her shoulder, and wheeled her back to the car.

Dotty had not yet been diagnosed. We were on our second of four doctors.

Soon Dotty started falling in the house. She couldn't get up on her own. Worse, she would struggle and struggle and never call out for help. She waited until I found her. Dotty was not falling down on her face. She would lose the ability to stand up and more or less just fold up.

Once, I found her laying in a parking lot and finally she fell and broke her pinky finger.

All the doctors, over 10 hours in an emergency room, and no one ever said, you might want to get her checked for dementia.

Along with what I described above, Dotty's mouth was getting meaner and meaner.

All of the above, and I still didn't know that Dotty's memory was shot. I didn't figure that out until I started buying Dotty's lottery tickets for her. Before that, we would go to the store every day and buy the lottery tickets for that day. Once I started buying the lottery tickets for her, Dotty wouldn't believe we had the lottery tickets. Even when I showed her the lottery tickets for that day, she still insisted we didn't have them and we had to go get them.

We did not have a diagnosis of dementia.

Finally, our third doctor said, she has Alzheimer's and flipped me a prescription for Aricept. I mean, literally flipped it to me. I said, no MRI?. By then I had started to educate myself. The doctor said, NO, she doesn't need it, she has Alzheimer's.

The fourth doctor made sure Dotty received all the appropriate tests to rule out other causes of her dementia like behavior, and finally to rule in probable Alzheimer's.

What I just described took almost 15 months.

I would be willing to bet right now that if I took Dotty to ten new doctors for a check up, not a single one of them would diagnose dementia.

I am going to write again about how Aricept helped us, and how the combination of Aricept and Namenda helped us turn the corner and get us where we are today.

I'll also write about how my entire focus shifted to Dotty's behavior, how this lead to the Alzheimer's Reading Room, and why I believe that Dotty is better today than she was 8 years ago. All of this in spite of the fact that all of her short term memory is gone.

More Insight and Advice for Caregivers

Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The blog contains more than 2,800 articles with more than 602,100 links on the Internet. Bob lives in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room