Ch.7. Who Should I Tell that I’ve Got Lewy Body? Acceptance, Embarrassment, Shame and Trust.

Ch.7. Who Should I Tell that I’ve Got Lewy Body? Acceptance, Embarrassment, Shame and Trust.

            Do you think this is an easy question to answer? Think again. Let’s look at some possible answers.

            Tell nobody. After all, it’s nobody else’s business.  Well, this won’t work for long. I agree that nobody has a right to know. But trying to hide the truth from friends, family, work colleagues and others is futile. First off, many of these people already know something is wrong. They just don’t know what. Secondly, many of them will eventually be needed for help and comfort (See Ch. 5: The Need for Support.) Thirdly, keeping this secret may lead to isolation and depression.

            Tell everybody. Why not just take a deep breath and announce to the world “Hey, everybody, guess what? I have Lewy Body Dementia.” Well, this won’t do either. There are small-minded individuals out there who won’t understand and will say mean things. And there are others, probably more people, who might act condescendingly. And there are gossips who will virtually take out an ad in the newspaper to make sure everyone knows about your “problem.”

            Tell only the people you trust.  Do you mean me, Ron, the caregiver husband, or do you mean Pat the LB person, should decide? I can think of at least one individual whom I trust but my wife distrusts. And what does the word “trust” mean? Trust they will be caring and kind? Trust they will be helpful? Trust they won’t suddenly vanish from your world? Trust they will keep your confidence?

            Ok, then, trust your gut to decide whom to tell. Unfortunately, trusting one’s instincts doesn’t always work (I often told my angry clients never to trust their gut because it usually led them to make terrible choices). Besides, we’re talking here about someone with brain issues that can lead to poor personal and interpersonal decisions.

            There is a deeper issue here as well. Shame. It’s hard to feel good about yourself when you can’t do stuff that used to come easy, when you can’t think clearly, when you’re not sure if what you see in front of you is real or a hallucination. I’ve noticed with Pat that sometimes she feels OK about having Lewy Body, sometimes it’s an embarrassment, and sometimes she feels ashamed and humiliated. When she feels ok, she lets people know about her condition; when she’s embarrassed, she doesn’t want to talk about it; when she’s ashamed she actively avoids people. Furthermore, she might feel ok talking with a group about Lewy Body one day but feel too ashamed even to be around them the next. She may even feel bad about having exposed herself to these people in the past.

            It would be interesting if Pat could “fully accept” her condition. But I couldn’t if I were her. It would be great if she felt no embarrassment or shame. But I’d have these feelings if I had Lewy Body, at least sometimes.

 I will say most of the time Pat grudgingly accepts that Lewy Body is part of her life. So do I, most of the time. I never feel shame for her. Pat is who she is, and I feel proud to be her husband.      

            Let me go back now to the original issue: Who should I tell? As a caregiver I’ve learned to be careful. I try never to mention Pat’s diagnosis to someone new without first asking Pat for permission. Occasionally I’ve slipped, though, usually when I’ve felt discouraged or in need of sympathy. And once it’s said you can’t take it back.


Who Should I Tell that I’ve Got Lewy Body? From Pat’s perspective:

            [Pat to Ron]: “Ron, go back and review the Lewy Body book. Look at all the things that go wrong when someone has Lewy Body. Would you want people to know if you had all those symptoms?”

Lewy Body is a complex set of functions, and those functions can affect ability to think Rationally all the time, deal appropriately with Hallucinations, and all this likely includes an inability to differentiate between a behavior and what others expect that behavior to produce.   My tendency is to not tell people who I know have very strong feelings about what is right and wrong. It’s rigid people who see things like hallucinations and say “Oh my goodness, that is weird and awful. It’s sad and uncontrollable. I’m not sure I want to be around her.”  I don’t want to tell them about Lewy Body because if I have to explain what Lewy Body is, it will include a lot of things they won’t like but if they insist I’ll tell them.

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