One issue with the person who has Alzheimer’s or Dementia is that they look so good. By looking at them, you would never know they have a problem. They don’t look sick. They don’t have a cold, or runny nose, or high fever. They look so normal that we’re totally surprised by their odd behavior and story-telling and sometimes wonder if it’s contrived.
The 36-Hour Day, from John Hopkins Press, states: “When a person has a stroke and cannot speak, we know that the stroke occurred in the speech center of the brain and destroyed cells that are necessary for the person to talk. A stroke often causes extensive damage, but to only a few areas of the brain. In Dementia, damage is done in many areas and affects many aspects of mental function. ….a strokes damage is done all at once. Alzheimer’s disease gradually does more and more damage. …different cognitive abilities are damaged unevenly and the person will be able to do some things but not others. He may remember from long ago, but nothing from yesterday.”
Alzheimer’s begins damaging the brain many many years before the symptoms of dementia are obvious to anyone other than the person afflicted. Because his memory-loss has occurred slowly, over a long period of time, the sufferer has become very skillful at concealing his disease.
We all forget things as we age. So from time to time many of us:
- Enter a room and forget what we went after
- Meet someone we “should” know, but can’t remember their name
- Forget the word we need to finish a sentence
And when these small signs of memory-loss occur, we often cover-up with a small fib or two–“Oh yes, I remember now.” “Surely, I would never forget you!”
So, likewise, the person with Alzheimer’s / dementia has done the same through the early stages of his disease. But over time, his forgetfulness has grown worse and his untruths have grown larger as well, it becomes a daily struggle to cope with a failing memory.
Eventually, the Alzheimer’s sufferer will be unable to remember things that happened earlier in the same day, such as whether he took his medication that morning or took a short trip to the store for groceries. What happened last week, will be totally gone from his memory soon. And while these memory losses continue to worsen, and eventually he will forget that he is “forgetting,” while the habit of covering-up will continue in earnest.
In time, it will become more and more difficult for the Alzheimer’s sufferer to learn, or retain new information since that area of the brain is the first to be affected by the damage to nerve cells. To adjust to these lapses in memory and continue to cover-up any disability, he will learn to conceal more of his memory-loss. It’s not unusual for Alzheimer’s patients to conceal their memory-loss so well that no one guesses their severe memory problems until they are near middle-stage Alzheimers.
By this time they have invented stories, made excuses and vowed that their memory is in-tact so many times that they believe it themselves. They repeat the same sentence over and over, lie when they forget, pretend when they can’t remember, and simply–keep using the same coping mechanism that’s worked so well for so many years.
We all have lapses of memory, more so as we age. But given a little extra time, even older people can retrieve a forgotten memory. When someone has Alzheimer’s these short-term memories are gone forever. They disappear completely.
A good memory and sound logic are both requirements for good judgment. When those skills are diminished, so is the sufferer’s ability to reason and make good choices. By now, he has already forgotten that he has memory issues at all, so he will believe that his decisions are good and sound and appropriate when he continues to deny his memory-loss. He will not understand that his thinking is faulty and his reasoning is no longer sound. By this stage all choice of behavior is out of his control; he believes the stories he tells and the memories he has invented.
How you react to the information the Alzheimer’s sufferer shares is up to you. A few of my choices are listed below:
- Mom told some stories about her childhood and family that were funny and held points of truth, but were mostly false.
- Some stories Mom told were total fantasy but bothered no one; Mom carried a doll that she claimed to have kept from childhood. In truth, this doll was acquired from a neighbor’s yard sale, but Mom didn’t remember that.
- I’ve recited one of her bigger invented tales at this post: The Desert Waterfall
- Mom would tell her doctor that she’d never been hospitalized, yet she had had many surgeries including a mastectomy that she did not remember, nor did she notice the scars.
Where I draw the line on the story-telling issue is when the patient makes false accusations; accusing the caregiver of theft or nursing home employees of abuse. All instances of abuse need to be investigated but if found untrue, certainly there are ways to coax the patient to accept truth. I’ve also discussed this issue at Post: How to Respond to False Accusations
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I’d certainly be interested to hear if any of you have had to deal with this issue. How did you handle story-telling or false accusations by the Alzheimer’s patient?
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It has been estimated that five percent of older people suffer from severe intellectual impairment. So these two eloquent and readable guides will be much in demand as the number of families facing the challenge of caring for a relative with some form of dementing illness continues to grow. First published in 1981, The 36-Hour Day follows the format of the previous two editions but has been thoroughly updated to incorporate new information on the latest research, several drugs that hold promise, and genetic aspects of Alzheimer’s. The heart of the guide remains unchanged, focusing on helping families cope with this progressive and irreversible disease. Besides tips on how to care for the demented during the various stages of the disease (for example, place a picture of a toilet on the bathroom door), the text discusses the different kinds of help available and how to seek it. Financial and legal issues are well covered, while sections on nursing homes and other alternative living arrangements provide advice and practical suggestions. Appendixes list recent books, videos, web sites, and U.S. and international organizations.
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Observing my own mother (who had Alzheimers), I thought that her untrue statements were not so much lies, but explanations she invented to make her life logical. All day long things surprised her – her crochet hook disappeared (her fingers still remembered how to crochet, even though the result was a little strange); someone wanted to take her blood pressure; her purse was under her bed. She had no way of understanding why these things happened, but it was necessary for her to make sense of them.
Imagine living a whole day in which everything you expected didn’t happen and lots of things you didn’t expect kept happening. It would be like Alice down in the rabbit hole – a little crazy. When the crochet hook turned up in the kitchen sink, Mom said, Oh it was sticky and I wanted to rinse it off. That wasn’t true, but it probably seemed true to her because it was a logical explanation of something that was otherwise crazy.
Oh you are so right. That’s exactly what it is. They are trying to make sense out of situations that make no sense.
What amazed me most was that Mom would remember her “pretend” explanation, but never remembered whatever I told her to explain a situation.
If you think about, that had to be so frightening for them. I can’t even imagine how that must have felt, confusing and scarey– I’m sure.