Apr 7, 2015

How Alzheimer's Changed Our Lives

How We Came to Know Great Grams Had Alzheimer’s

By Max Wallack
Alzheimer's Reading Room

Great grams never had an easy life. She came to this country as a young child. Her parents never learned to speak English. She had two older sisters. The oldest had polio.

How Alzheimer's Changed Our Lives

When she was a young teenager, her father got cancer. At the age of 12, in 8th grade, great grams had to leave school and go work full time in a factory. A few years later, her father passed away.

Great grams was never a very trusting person. She was always honest and kind to others, but she never trusted others. She was a very devoted wife, mother, grandmother, and great grandmother.

Great grams had been quite independent. Even in her 80’s, she was capable of travelling alone by bus to a grocery store, shopping, returning home with her purchases, and cooking.

The first problems I remember with great grams happened when we were driving in the car. I must have been around 6 years old. My mom and grandmother were talking in the front seat, while great grams and I were in the back. Great grams became very angry, saying that my mom and grandmother were saying bad things about her, when they hadn’t been discussing her at all.

At the time, we thought she must be hard of hearing. However, these kinds of accusations and general paranoia continued and increased throughout that year.

Shortly after I turned 8, and great grams was 91, great grams took an annual mammogram, and it showed something suspicious. She completely fell apart.

The clinic was suggesting that they not follow up on their discovery because she was not emotionally capable of handling any further tests. The doctor suggested she see a geriatric psychiatrist who could prescribe some sort of tranquilizer or antidepressant to calm her enough to be able to follow up on her mammogram.

The psychiatrist was a smart, wonderful man. He prescribed a very small dose of Remeron, just enough to get her through the necessary tests. Great grams behavior improved immediately. She became much calmer. She slept better at night. Her paranoia seemed to decrease.

She took the follow up tests, and the results were negative. However, great grams had gotten into such a state worrying about that mammogram, that we thought perhaps she had had a “nervous breakdown” about it.
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A few months later, my family went on a trip to Washington D.C. at Christmas time. It was not a good trip. We had gone even though I had a slight fever, hoping I would feel better soon.

The weather in D.C. was frigid with strong winds. The windows in the hotel rattled. Then, there was a power failure. We had no electricity in the hotel and no heat. The elevator didn’t work, and we were stuck on the 6th floor.

My fever increased to almost 105. Hotel employees were trying to run medications, blankets, etc. up the stairs to me. I think the blackout must have been for some electrical problem because fire engines circled the hotel for hours. Great grams lost it. She started screaming we were all going to burn to death in the hotel.

After many hours, the power came back on. My fever stabilized. We decided to cut our “vacation” short and head home the next morning.

Great grams was in quite a state. She had diarrhea all the way back to Boston. She was covered. Grandma was throwing her clothes away little by little at every bathroom from D.C. to Boston.

The next day, at home, great grams had her first episode of delirium. She was insisting everyone wanted to hurt her. She didn’t know who we were. Finally, we had to bring her over to the hospital, where she told everyone that she had been a very wealthy lady, and my family had taken all her money to buy a home. She also said that she had been engaged to my dad, but my mom had taken him away.

She had never acted like this before. The local hospital checked her out, and then she was sent by ambulance to the Hospital’s dementia ward where her psychiatrist worked. It took her several weeks to come out of her delirium. During that time, she thought she was a little girl, and my grandparents were her parents.

The psychiatrist told us she had dementia, but we didn’t understand what that meant. We were naive. We thought it just meant a bad memory. That didn’t sound so bad, right?

Great grams came home after two weeks. We rushed the doctor because she had come around and was afraid of the other patients.

When we got great grams home, she seemed okay. Again, we went into the mode that it was just an “episode”, like a nervous breakdown. When great-grams asked what had happened, we told her!

BIG MISTAKE! Telling her what she had said and done put her back at square one. She starting crying and was readmitted in another delirium later that day.

It was another two weeks before great grams came home again. But, now we knew better. We could never be completely honest with great grams again. It was hard! We had always been honest, but now we had to protect her from the truth. Now, she needed reassurance, even though we knew she was having major problems.

Our life changed.

Max Wallack is a student at Boston University and a Research Intern in the Molecular Psychiatry and Aging Laboratory in the Department of Pharmacology and Experimental Therapeutics at Boston University School of Medicine.  His great grandmother, Gertrude, suffered from Alzheimer's disease. Max is the founder of  PUZZLES TO REMEMBER. PTR is a project that provides puzzles to nursing homes and veterans institutions that care for Alzheimer's and dementia patients.   Original content Max Wallack, Alzheimer's Reading Room

What is Alzheimer's Disease?

Alzheimer's disease affects memory, thinking, concentration, and judgment; and, ultimately impedes a person’s ability to perform normal daily activities.

What is Alzheimer's Disease?

In order to be an effective Alzheimer's caregiver or to communicate with someone living with Alzheimer's disease, you must build a solid foundation of understanding.

Understanding Alzheimer's is an essential part of this foundation.

 Alzheimer's disease is the most common form of dementia.