Have I done him wrong?

This sentence from an Alzheimer’s Association website article jumped right off the screen at me:

Most people living with Alzheimer’s Disease are not aware of their diagnosis.

What?

“Despite…the benefits of clear and accurate disclosure,” the article continued, “[only about 45 percent] of seniors diagnosed with Alzheimer’s…[have been] told the diagnosis by their health care provider.” And their caregivers don’t know either. On the other hand, more than 90 percent…of cancer and cardiovascular patients do know their diagnoses.

Whoa-a!

There is still only one way to diagnose Alzheimer’s definitively and that’s through brain autopsy. If the person exhibited Alzheimer-like symptoms while alive and the brain tissue contains the microscopic physical abnormalities typical of the disease, a definitive diagnoses can be made.

Physicians can correctly diagnose Alzheimer’s disease about 90 percent of the time while the patient is alive, based on mental and behavioral symptoms, physical examinations, neuropsychological tests, and lab tests.

But there’s still no cure.

Screen shot 2015-05-18 at 8.25.49 AM

Every 67 seconds, someone in the US develops Alzheimer’s.

Peter’s neurologist diagnosed his dementia about seven years ago. She didn’t use the “A” word, rather she said simply, “Dementia.” I breathed a sigh of relief, and when we got into the car to come home, I started crying. Peter wondered why.

“Because you don’t have Alzheimer’s,” I said, “it’s ‘only’ dementia.”

“Is that good?” he asked.

“Well, no, but it’s better than Alzheimer’s,” I said.

Screen shot 2015-05-18 at 8.25.38 AM

By 2050, there could be as many as 16 million people with Alzheimer’s.

He asked no further questions then or since. Every now and then he’ll say his memory is getting worse, so I remind him it won’t get better. I’ve never used the dreaded “A” word, but I wonder if I should? Deep down, does he know?

Have I done my husband a disservice by not laying it out? Should I attempt to do it now? If he already knows or suspects, he would never say anything. That’s not his style. He’s always played things close to his chest.

Screen shot 2015-05-18 at 8.25.28 AM

More than 5 million Americans have Alzheimer’s.

Experts advise telling patients and families because
of the need to:

  • Plan for the future
  • Take care of financial and legal matters
  • Address potential safety issues
  • Learn about possible future living arrangements
  • Develop support networks

Been there, done all that, without having The Conversation. Have I done him wrong, to paraphrase a line from an old Mae West movie? I don’t know.

Screen shot 2015-05-20 at 5.30.52 PM

I really had to look hard for something to fulfill my laugh-a-day pledge. This one works for me. Hope it does for you.

The doctor says to his patient, “I have good news and bad news.”
‘Tell me the bad news first, Doc.” 
“You have Alzheimer’s disease.”
“Oh no! What’s the good news?”
“You can go home and forget about it.”

 

 Graphics Alzheimer’s Organization©

 

6 thoughts on “Have I done him wrong?

  1. What is to be gained, Judy, for either of you? You have already done, and will continue to do, everything on that list – is Peter being ”informed” going to make any difference to the outcome. Repeat after me ”you have not done him wrong’, and again, and again.

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  2. Judy, I’m interested in this subject because no one, at least no physician, told me Mom’s diagnosis, and I’m her MPOA. So could his doc have told you that Peter has Alzheimer’s, does the physician really know that? It took me a long time to realize Mom had dementia and I’ll probably never know what kind. She just does and it is progressing pretty rapidly right now. She is losing her speech and even that is different from one day to the next It really is all about the symptoms and how she is coping and how I can help her be the most comfortable and happiest. So far so good. But right now her happiness and coping is like a moving target and it’s pretty much related to the state of her memory. I guess what I am trying to say is that it is all so unpredictable and it doesn’t matter what it’s exact name is, it just is what it is and as a caregiver, it comes down to your creativity and clear thinking to make the situation the best that it can possibly be. You seem to be doing an exquisite job of that and, by the way, you seem to be doing an awfully fine job of keeping you own nose above water! I love your blog…thank you so much for it!

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    • Thanks, Karolyn. It is what it is, is so right! Funny you used the expression “So far so good.” That’s Peter’s answer to about everything these days. I appreciate your thoughts. Thanks again.

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  3. Judy you are Peter’s wife and caregiver and you have done well by both. Your writings on life with him with this disease shows more than you realize this love. You always look for the brighter side and find it, yes some days may be harder than others, but you get through them one day at a time. No I don’t think it would make any difference if Peter knew the name for his memory slipping because he wouldn’t remember. And remember what I said , he remembers he doesn’t remember…but he knows your love…that I am sure!

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