Alzheimer’s disclosure is met with . . . silence

Dear readers: Like you, I’m often curious about what happens to the advice I offer once it leaves my desk, and so I’ve asked readers to send in “updates” to let all of us know how my advice was received, if it was followed, and how things turned out.

The responses have flowed in, and I’m interested and often gratified to learn what impact this experience has had on readers.

To refresh all of our memories, I’m running the original Q&A, followed by the update.

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

My question relates to my sister. She and I had been estranged for almost a decade. Two years ago, I realized that our disagreements were water under the bridge, and we reestablished a relationship. She lives several states away and has no contact with my friends.

I have never disclosed my diagnosis to her. I don’t want her to come to the conclusion that I broke down the barriers between us because of my illness. I did that because I love her, and not because I am staring into the face of my own mortality.

I also don’t want to bring stress into her life, she has enough of that, and she will fly into stress mode — that is who she is. Also, because she is my “big sister” I 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 to be the basis for our relationship.

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

A. I believe you are making the right decision, because, right now, this is how you are coping with a very challenging diagnosis. 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 breaking this news to her, telling her explicitly in advance that she can help you the most by staying calm and by letting you call the shots.

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. (Originally published in September, 2021)

Update: 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 the family’s medical history.

At that point I felt that saying nothing created a lie by omission, so I told the family.

I feared my sister would go into overprotective, 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).

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

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

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

Nevertheless, my relationship with my sister continues to strengthen and that’s what matters to me, so I count my blessings.

Go figure!

TORN

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