Reactions to an Alzheimer’s Disease Diagnosis
This Associated Press (AP) headline on the computer caused me to raise my eyebrows in surprise:
“News of High Alzheimer’s Risk Doesn’t Devastate”
Could this really be true?
The article summed up the results of a study funded by the National Institutes of Health and published in The New England Journal of Medicine on July 16, 2009:
People who learn through genetic testing that they have a higher than average risk for Alzheimer’s disease are able to handle the bad news pretty well, results from the first major study of this suggest . . . . But they challenge assumptions that people will be devastated by a positive test result and misread it as certain proof they’re doomed to Alzheimer’s. . . .
The study measured anxiety, depression and stress levels in 162 healthy adults who were children or siblings of people with Alzheimer’s. The participants were in the early 50’s, on average. Most wanted to know if they had the gene, and people who already had severe anxiety or depression were not included.
Yes, this was published originally in a scientific journal. And, it is telling people only that they have a higher than average risk (not 100% certainty) they will get the disease, but I find it hard to believe the participants handled the news that well.
A Response at the Other End of the Spectrum
In Behind the Mask, Helene Moore writes about receiving the news alongside her husband, Howard, that he has “probable Alzheimer’s disease” at age 63.
We are no longer smiling. I feel as though a mule has kicked me in my stomach. Emotions race through me like sand through a sieve. Anguish. Pain. Anger. Terror. Oh my god, Alzheimer’s. Not that! Not Howard!. . .
I swallow my tears as my heart pounds in my chest. I reminded myself to stay clam, strong, and centered. What was my poor lover feeling? Please God, help us. I feel like Alice in Wonderland, hurtling down a dark spiraling tunnel into a deep void. Could I wake up from this nightmare?
We made our way outside the doctor’s office where we stumbled wordlessly into each other’s arms, both of us trying to shield the other from the force of this cruel blow.
We cried from the depths of our souls. We cried for a future that was a death sentence for both of us. . . .
I no longer noticed the sunshine nor felt its warmth. I couldn’t smell the flowers, although I knew they were there. How could the world be so unchanged while our lives were thrown into intense turbulence?
Moore’s book is the secret journal she kept when she became a caregiver overnight for Howard, and how she handled the unusual caregiving journey they went on together. It is a fascinating story of love, courage and hope which all caregiver families can learn many lessons from. More information about it is available on Moore’s web site.
My Response to My Mom’s Diagnosis
I was getting ready to play in my first ever doubles tennis tournament one evening, when the phone rang. It was my Dad giving me the news that their family doctor told him that day that my Mom had Alzheimer’s disease. (I had observed her memory problems during our cross-country visits, but not knowing anything about dementia or Alzheimer’s, I chalked them up to normal aging.) What a bombshell for us! I don’t even remember most of what I said during the rest of the conversation, other than I was as supportive as I could be 3,000 miles away and told him we would get through it together. I then went out to play in the tennis tournament, but my body just wouldn’t do what my mind was telling it to do in order to play decently. To this day, I’m sure my doubles partner wonders what the heck was wrong with me that night! Now you know, Diane.
If you or a loved one has received an Alzheimer’s diagnosis where did you fall on this continuum of reactions?
If you’re a child or spouse of an Alzheimer’s patient, would you have genetic testing done to learn how high a risk you are for contracting the disease?
Let’s discuss in the Comments below. . .
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Wow! Okay, I would have to say that I wouldn’t want to know. If I was at risk for a disease I could prevent by changing something (lifestyle, diet, exercise) then yes, I would want to know. Correct me if I’m wrong, but there is nothing you can do about a diagnosis of high risk for Alzheimer’s. That being the case, I would rather just keep on trucking, blissfully unaware.
My mom, who has Alzheimer’s and dementia, has lived with my husband and I since her stroke and TIA, so we witnessed the decline in memory and sequencing skills. For me, the tougher realities were taking over so much of her mental responsibilities — financial, medical, dietary — but still seeing her physically quite strong.
I don’t care if you are the spouse, or the child, hearing that diagnosis is always a bombshell!
Would I want to know in advance. Yes. First I’d make sure about the gene APOE4, then I would make every day count with family, friends and what you want to do with your life until you no longer know yourself. I’d write my Memoirs, I’d sped time with loved one, and yes, I’d find out everything I could about Alzheimer’s Disease.
Hi Eliza,
I agree with you. I don’t think I’d want to know the *possible* medical liabilities that lay ahead. I try very hard now to make every day/hour/moment of life count. If I knew tough times were ahead,it would distract me and only make it harder to live life to the fullest in the present. As far as I know, while they say keeping physically and mentally active may help keep our brains and bodies functioning better, there is nothing you can really “do” for such a diagnosis. Maybe research will change that in the future.
Hi Lori,
Watching your mom’s gradual decline does fall into a different area on the continuum. It is certainly difficult when our loved one’s mental and physical selves don’t align as we (and they) are used to. I’ve experienced that myself when recovering from surgery. My mind said I was 100%, but my body still needed to take it slow and not go full speed ahead — very frustrating.
Hi Helene,
Thank you again for writing your book and sharing your experience with the world. Your comment here reflects the sincerity of your book. Best wishes to you and Howard!
The kind of problems that have been commented on here is relatively easy to handle for caregivers. When the husband or a father gets it and takes the “prone to violent outbursts” route, it is devastating for the primary caregiver, observers and well wishers.
As a patient, I can get used to the idea, but as a caregiver, the implications can be devastating if one was to told in advance. It will however give time enough to get prepared for it.
But, as you have rightly pointed out it is the risk that is under question and not the possibility of the disease itself that is being pointed out. When such a serious disease is discussed, we tend to read what we wish to read into it I suppose.
Dear Rummuser,
“When such a serious disease is discussed, we tend to read what we wish to read into it I suppose.” Yes, read and also hear. We may listen to what the doctor is saying, but not truly hear it, if you understand my meaning. That is why it is always smart to take another person with us to important MD appointments — as well as accompanying our seniors to theirs.