If you’ve seen one case

I first found the phrase “If you’ve seen one case of Alzheimer’s, you’ve seen one case of Alzheimer’s” early on in my internet search for information about the disease. I wanted to know what to expect and was looking for clear answers about how the disease progresses. It wasn’t very comforting to find this phrase though. It seemed to imply that all cases are different, so how could I possibly know what to expect!

Another way of stating this may be, “your experience will be yours and yours alone.”

On further reflection, and as I met more people on this same path, I realized that of course each case of Alzheimer’s disease will be different from all others. Our stories are all different and uniquely ours. Each case of Alzheimer’s disease is different because each person is different. And when a disease affects the brain, and because our brains are uniquely ours, what results is unique to the individual.

When you compare stories about your love one with someone else who is caring for a dementia patient, this truth is obvious. Not all patients repeat questions endlessly. Not all patients wander. Not all patients become belligerent.

You see what I mean.

If you are a caregiver, you are caring for one person, one unique person, and you will need to approach care in a way that is uniquely geared to that one person and his or her unique needs.

It still pays to educate yourself, though. There are commonalities across the spectrum of the disease. You will have a better idea of what to expect if you understand the stages and progression of the disease, even if every patient doesn’t follow a strict path of progression.

For example, I was constantly bombarded by the question, “does he still know you?” Even from the very beginning! It’s as if that was the only behavior people knew about and assumed once Harvey had a diagnosis of Alzheimer’s that he automatically didn’t know who I was.

Like I said, each case of Alzheimer’s is different, but not recognizing a spouse comes much later in the disease progress. And to be honest, I think he knew who I was until his last year of life.

I also found it particularly helpful to watch YouTube videos. Seeing a real life person in the different stages of the disease made what I was reading come to life.

I remember watching an interview of a couple, the husband with dementia, and thinking, “This is how we will be in a few months or years.” The husband was smiling and nodding while the wife did most of the talking. When he was asked, “what does she do for you?” the husband replied after a long pause, “Well, everything.” I wasn’t far off!

Another video showed an older woman talking to herself in the mirror, not realizing it was her reflection. When Harvey did that, I wasn’t as shocked as I would have been had I not seen that video a few years earlier.

Now the phrase “if you’ve seen one case of Alzheimer’s, you’ve seen one case of Alzheimer’s” seems more affirming to me and much less frustrating. Our individual human uniqueness shines through, even in dementia. We are all alike, even as we are all different.