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Alzheimer's and the Devil Called Denial

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Alzheimer's is, above all, an insidious disease. Its symptoms often begin so mildly and progress so slowly that it's easy for friends and loved ones to deny them until one day there's a 'defining incident'; an incident so bizarre that not even the spouse, child or other loved one can ignore it or explain it away.

Various 'defining incidents' have been recounted. Some people get lost driving home and end up bewildered and many miles away. Some leave the house in their pajamas, and some fail to recognize a close friend or family member. These are just a few of hundreds of examples.

Yet the disease typically starts with things of little or no significance. Not being able to come up with a common word. Mixing up someone's name. Forgetting to turn off the stove. Things we all do from time to time. But for the person just entering the fringes of Alzheimer's, these things may begin to happen more and more often.

Years may pass between the earliest occasional confusion and the 'defining incident.' And during those years, the person may annoy or even anger friends and family members by being late, forgetting important appointments, being short-tempered, being unable to perform routine tasks and exhibiting a whole variety of other troublesome behaviors.

As the brains of people developing Alzheimer's slowly deteriorate, they struggle to adjust and continue functioning. This alone takes extreme mental effort, often leading to anger and agitation. During this time patients are also usually in denial themselves, realizing something is wrong and trying to understand it in any way possible that doesn't involve the words 'Alzheimer's' or 'dementia.'

It was obvious to me that my Romanian soul mate, Ed, was worried about possibly having Alzheimer's. He used humor as a coping mechanism. He ended every medical visit by pronouncing loudly, "At least it isn't Alzheimer's!" Then he laughed heartily.

My denial of Ed's symptoms was particularly strong. I worked hard to come up with explanations for each of his symptoms. When he repeatedly confused the name of his bank with the name of the grocery store I thought it was just a normal sign of aging. When he couldn't pay his bills properly I thought he'd just had too much to drink that evening.

When he completely forgot a phone conversation we'd just had, I honestly couldn't come up with a logical excuse, so I just pushed it to the back of my mind and soon forgot about it. There were many events that I ignored over a period of years.

Then when his symptoms became more severe, I still made excuses for him. When he got lost driving to the corner gas station, I thought he was just temporarily confused. Even when he was found driving on the wrong side of the road one night, I decided it only happened because he was driving at night -- something his doctor said he shouldn't do because of his failing eyesight.

But the 'defining incident' finally occurred. I was talking to him on the phone one evening and he told me he couldn't find his scissors. I told him to go look in the kitchen, which was where he kept them. I was shocked and frightened at his response.

"Kitchen?" he asked. "What's a kitchen? I don't have a kitchen."

My heart started beating faster and my hands were shaking as I kept trying to jog his memory but nothing worked.

After a long silence he said, "Oh, how silly of me. I do have a kitchen but it only has clothes and shoes in it."

Considering this and all the other signs of dementia he'd been exhibiting, I finally had to face the cold, hard truth: Ed was demented. And my heart broke as I realized it. There are few, if any, things in life more painful and chilling than realizing your mate has Alzheimer's.

But people noticing consistent signs of confusion and forgetfulness in a loved one should not wait for the 'defining incident.' One early action to take is to review the Alzheimer's Association's 10 Signs of Dementia and ask yourself whether your loved one is showing one or more of them:

1. Memory loss that disrupts daily life
2. Challenges in planning or solving problems
3. Difficulty completing familiar tasks at home, at work and at leisure
4. Confusion with time or place
5. Difficulty understanding visual images and spatial relationships
6. New problems with words in speaking or writing
7. Losing things and the inability to retrace steps
8. Decreased or poor judgment
9. Withdrawal from work or social activities
10. Changes in mood and personality

The Alzheimer's Association website has additional information about each of these items and explains how they differ from things 'normal people' do from time to time.

It's easy to ignore these signs or fail to connect the dots, but when a loved one is showing them it's essential to dig down deep into your soul and find the emotional strength to get a medical evaluation as soon as possible. Early detection gives you and the patient time to prepare for the future and allows for appropriate medication to be prescribed, which usually works better if started early on. In addition, it allows the patient to participate in long-range planning.

It also helps you and your friends and family members adjust to the person's condition, rather than become angry at their unusual actions and possible negative personality changes. It will allow everyone to be more understanding and compassionate. No one wants to be evaluated, or have a loved one evaluated, for Alzheimer's disease, but sometimes it has to be done -- and the sooner the better.

Note: For more information about my journey into Alzheimer's with Ed (as well as a wealth of caregiving advice) you can read my book, Come Back Early Today: A Memoir of Love, Alzheimer's and Joy and visit my website. A slightly different version of this post was published on the Alzheimer's Reading Room.