An Alzheimer’s Diagnosis Secret

He and I have continued to correspond, and I’m happy to share an update to his update, as a reminder – to all of us – that time plus wisdom can bring on a (mostly) happy ending.

Below is the original question about his diagnosis secret and my answer (edited for length). The updates follow.

Dear Amy: 

I am 58 years old. I was diagnosed with early onset Alzheimer’s two years ago. My friends all know about my diagnosis.

My sister and I had been estranged for almost a decade. Two years ago, I realized that our disagreements were water under the bridge, and we re-established a relationship. She lives several states away.

I have never disclosed my diagnosis secret to her.

I don’t want my sister to think that I reconciled with her because of my illness. I did that because I love her, and not because I am staring into the face of my own mortality.

Upon learning this news, I know that she will fly into stress mode — that is who she is.

Also, because she is my “big sister” I also know that she will go into: “I’ll take care of you” mode (again, it is her nature), which is not what I need or want.

On the other hand, I don’t want her to feel betrayed when she inevitably learns about my illness.

Right now, I am able to hide my symptoms well. When the day comes when this is not the case, I plan on telling her (and her children).

I am extremely torn as to whether I am making the right decision. Am I?

– Torn

Dear Torn: 

You have the right to control your own health information – for whatever reason you choose.

You seem to be protecting yourself from the stress of your sister’s anticipated reaction, but I want to remind you that people do not always react in expected ways.

Now that your relationship with her is on a better footing, you might be closer to sharing your Alzheimer’s diagnosis secret with her. The timing of your diagnosis and the reconnection with your sister does seem more than coincidental, and, in my opinion, awareness of your own mortality is the best reason in the world to reconnect.

Update from “Torn” (2023)

Dear Amy:

This is a strange slow-motion disease for which you have to keep a healthy balance between keeping hope that there may be a medical solution, and embracing reality.

My experience with my sister illustrates what you often discuss in your column: that we shouldn’t rely on our assumptions.

Long story short, I kept my diagnosis private from my sister until a Thanksgiving weekend family conversation, during which out of the blue someone raised the issue of whether our family is vulnerable to the disease because of our medical history.

At that point I told the family.

I feared my sister would go into over-protective, over-involved mode. Bizarrely, the opposite happened. None of the family said anything other than a few value-neutral questions, like, “When did you find out?”

It was such a stereotypical WASPy family reaction (which we are).

I’m not angry or upset – just baffled. As we got into the car to leave the dinner, my partner turned to me and said, “Well, that was weird.”

After that, we have never discussed the topic again (and it’s going on a year since the conversation).

Several months later I tried to broach the bizarre family reaction with my sister in a joking manner, and she quickly changed the subject.

Nevertheless, our relationship continues to strengthen, so I count my blessings.

Go figure!

– Torn

Dear Torn: 

Go figure, indeed. I hope you’ll keep in touch.

Dear Amy (2024):

I have always treasured your concern and responses to me.

This year my neurologists have expressed astonishment that I have not deteriorated quicker than expected (they used much kinder terminology).

I remain indebted to them, and I continue to live the best life that I can.

My sister and I are closer than we have ever been, and I am so grateful, but also embarrassed by whatever motivated me to participate in our long-ago and long-lasting estrangement in the first place.

Dear Torn:

Your story is powered by its own particular grace; it is also a lesson in how letting go can lead to reconciliation. I know we’ll keep in touch.

In the tradition of the great personal advice columnists, Chicago Tribune’s Amy Dickinson is a plainspoken straight shooter who relates to readers of all ages. She answers personal questions by addressing issues from both her head and her heart. A solid reporter, Dickinson researches her topics to provide readers with informed opinions and answers – ranging from an Alzheimer’s diagnosis secret, to the challenges of settling an estate and a depressed parent.