“I’m dying so I’m not denying myself anything.”
By Lin Cochran
The big emphasis right now is on early detection of Alzheimer’s. My recently diagnosed husband apparently would disagree. And how early is early?
In May 2010, cognitive problems and getting lost forced my truck-driving husband to come in off the road two months shy of his 65th birthday.
This past year has been spent getting a diagnosis. As everybody knows, it ain’t easy to nail down which type of dementia looms.
The PCP took one look at him and gave him a sample pack of Aricept. DH took one pill, read the package insert, and that was that.
He threw them in a drawer. A year later, after an X-ray, CT scan, MRI, spinal tap, and a myriad of blood tests, the neurologist confirmed Alzheimer’s.
Bill doesn’t believe it.
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Bill accepts that he carries the ApoE4 gene, so he is taking Aricept and Namenda just in case he might get Alzheimer’s when he’s 80. And he admits Seroquel helps deal with some of his rage, but not all of it. He says he was born with rage, and can remember being five and six years old, destroying a toy wagon because the wheel broke.
After a couple of months the meds are still making him sick and he says he does not want to live this way. He means it. He says he wishes I had never made him go to the doctor.
Participating in what are now considered best practices, such as eating right and exercising, is out of the question. One minute it’s,
“I’m dying so I’m not denying myself anything.”
The next minute, it’s,
“There’s nothing wrong with me so why shouldn’t I eat what I want.”
Always, it is:
“I wish I’d never retired. I shoulda’ just stayed out there. All this started when I came in off the road.”
Well, no. All this started only God knows when and maybe as far back as when you were five or six, whomping the hell out of that little wagon.
According to one study, the ApoE4 gene affects behavior 50 years back or more. So when did it start morphing into Alzheimer’s? When did he stop merely being a big teddy bear with a bad temper? When did the wonky proteins make his brain forget how to figure and cut an angle with a saw?
When did he become suicidal?
Was it in some rare totally lucid moment of utter comprehension? He says he does not have Alzheimer’s, but is the truth eating at him deep inside? Can he feel the darkness calling?
For now, anosognosia protects him from himself. As long as he can tell himself the medicine side effects are temporary, that one day he will feel better; and as long as he believes there is nothing wrong with him, that it is all my fault and that if I’d never made him go to the doctor everything would be okay, then maybe he is safe for now.
Of course, that means I bear the burden of his illness. Most spouses earn t-shirts that read the Brunt. However, thanks to what I have learned from the Alzheimer’s Reading Room, such as taking one step to the left when the craziness starts, I make it one episode at a time.
Still the question needs answering: What good is early detection when they don’t believe it and refuse to fight back because nothing is wrong?
Or else they become so despondent they don’t want to live?
If it is to get them on the right combination of medicines, I can argue both sides:
Yes, they make him sick, but also I see an improvement in his ability to solve problems and express himself. In fact, he uses language better than he ever has since I’ve known him, about seven years. I thought he was a man of few words. Turns out he just could not retrieve words as he can now. Some days I long for those quieter days, especially when we’re in the car.
He can still drive, and for that I’m grateful. He is fully functional in every way except for reasoning. His intolerance of change is another post.
I just wish some of these experts would address early diagnosis from the point of view of the patient. It wouldn’t do any good to talk to my husband because he wouldn’t believe them anyway.
Which is probably for the best.
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Original content Bob DeMarco, the Alzheimer's Reading Room