I Have Alzheimer’s Disease?

Just as a person diagnosed with Alzheimer’s disease follows his or her own unique course of the disease–if you’ve seen one case of Alzheimer’s, you’ve seen one case of Alzheimer’s–so too are their individual responses on hearing that diagnosis.

I invite you to try to put yourself in the mind of someone who is starting to forget things or feels less sharp. You know that something isn’t quite right, you feel off, but you can’t put your finger on it.

Maybe you would feel disconcerted. “Why is this happening?” “What is wrong?” “Why is my memory not as good as it used to be?” Not many would immediately jump to the conclusion that the culprit is Alzheimer’s disease or another dementia.

(Though I suspect most caregivers and close family members of an affected person would have this personal fear immediately!)

Harvey had been telling me for a couple of years that he thought his memory wasn’t as good as it had been. I suspect he thought he was just getting older. When I told him that I was noticing his memory issues, Harvey’s reaction was to try to justify it or make sense of it. He wondered if he had been too introverted all of his life, not social enough, and that he needed to engage more with people. He thought that maybe more caffeine would awaken his brain and make his memory sharper. I don’t think that Alzheimer’s disease, at age 48-49, was on his radar.

I suspect most older people, if they experience a decline in memory, would also chalk it up to aging. In fact, there is a natural decline of memory with age, but Alzheimer’s disease is NOT a normal part of aging. It’s normal to forget names. It’s normal to walk into a room and forget what you went into the room for. Normal aging does not impact the person’s daily functioning.

Other very initial reactions may be to think that there is a medical or pharmaceutical reason for memory loss. “Is my heart condition causing poor blood flow to my brain?” “Is this pill for my depression making me forget things.”

Now I invite you to imagine what it would be like to hear that you officially have Alzheimer’s disease. Fear, denial, anger, and depression would all be normal first reactions. You might even feel relieved, knowing there is a legitimate reason for what had been happening. If the disease is more advanced by the time a diagnosis is made, you may not be able to process and understand the information.

After getting a diagnosis of Alzheimer’s disease, how would you respond? Would you become an advocate, traveling and speaking? Would you discuss the implications for the future with your family? Would you act as if nothing has changed? Would you spiral into depression?

Harvey actually never talked about his diagnosis. I don’t know if he didn’t need to talk about it because he was thinking about it when he was home alone all day, and didn’t need to talk with me about it. Or maybe he wanted to spare me his pain, and kept it all to himself. I’ll never know.

I do know, that as a caregiver, it is our job to respect the responses of those we care for and love them through it all.