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Removing Embarrassment from the Dementia Equation

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Jesse just about every time I read your posts about your mother I find it to be very similar if not exacttly the same case as with my mother. And just as you have mention she hides it from herself and will place blame on anyone no matter how riduculous from the misplacing the telephone to any normal daily mishap and concoct a story to validate that she had nothing to do with it.

Great insights, ff. And my condolences. You were good company for your father, this past year. I can tell by your write-ups that he got a kick out of you :-)

This is a very insightful article. Some of us have loved ones who do not know or acknowledge that anything is wrong with them. They say they have a little memory loss, but saying the word dementia is sure to cause anger. My mother has seen the word written on her medical forms, but it didn't register with her. She holds fast to the belief that there is nothing wrong with her. I do not mind talking about it with others at all and find no shame in it. However, she does, so I tend to respect her privacy when it comes to people she knows and talk about it only with family.

My mother has always hidden her real self in public. It isn't unusual that she is also hiding her cognitive problems. I do believe that she also hides them from herself most of the time. She instead looks for things around her that are causing the mental and physical symptoms she feels.

I believe every era has an illness that was not understood by enough people thus they would shy away. Like, if they pull down the blinds, it would go away.

When I was in Middle School one of my best friends had epilepsy and I was so surprised how many other students would shun her. There were so many myths and misconceptions regarding epilepsy. I had no fear, I never thought I might catch it, nor did I believe it was mythical curse.

Then when someone was diagnosed with cancer, it was hush hush. Lot of whispering. Today people are more open about this disease and science has made numerous strides. Yet some of us will find our friends distancing themselves from us apparently from the fear they might get cancer next.

Along came HIV/AIDS, again with so many myths and misconceptions about the disease. Some people actually thought one could get this illness just by hugging a person who was diagnosed, or even being in the same room. It's no longer a death sentence.

Thus, I believe there will be a time when Alzheimer's/Dementia will be more understood. Social media and the news media needs to bring it to the forefront. I know I was never embarrassed to tell friends and relatives that my parents both had a form of dementia.

When my Dad moved into Memory Center at 95, the caregivers he had for a year loved him dearly and I continued to use their services because I knew it would give Dad a routine. Any time Dad would mention that he felt like he wasn't thinking clearly, I would tell him that I would forget things, too. Our brains are like filing cabinets jammed packed full of information and it just takes a bit longer to find the right file. Sometimes I would remember the answer, out of the blue, a day or two later.

Great article David. I think you're right. The reason I blog anonymously is that my mother doesn't want to be 'the face of dementia." Despite my assurances that Alzheimers' and intelligence are two completely separate things, Mum is convinced that she has failed in some way. She frequently experiences shame and embarrassment as a result.

Thank you for this articulate and compelling contribution to the discussion.

This is an interesting take. I am a wife and caregiver to my 58 year old Early On-Set Alzheimer's husband. I have never felt any of these feelings. As I was shouting it from the roof tops as to get anyone and everyone's attention. One needs help and services and to hide and deny that is more of an act of self sabotage. However, for others I believe you are correct. Work friends, and community friends, do not come by at all. Because of their feelings they do not visit. Too sad.

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What a fabulous article! Thanks for writing about this often hidden aspect of Dementia.
From my experience with families, I perceive that it takes a huge amount of moral courage to admit that a family member has a type of Dementia. Very few folks can look a fiend or neighbor straight in the eye and inform a family member has dementia. They must believe that their loved one's disease reflects badly on them.
In my case, I am the Significant Other of a Nobel Prize recipient. Over 18 months ago, I told his middle son, age 54, that his father was suffering memory loss. The son responds to my email, criticizing a word that I had used in my email. Of course, it was easier to criticize me for his lack of vocabulary than admit that my observations might be correct. The result: I no longer communicate with this son. However, he has cut himself off from a vital source of info. about his 85 year old father. As Thomas Jefferson reportedly said "Truth is the first chapter in the book of wisdom."
As David Hilfiker notes in this article, shame and dishonesty cut families off from a vital source of support, one that will become increasing important as the forms of dementia progress. I have seen friends drop away as Alzheimer's progresses until they are down to just one or two.
For all who lack courage to address Alzheimer's in your family, I suggest you stand in front of a mirror and repeat "My (mother, father, sister, brother) has Alzheimer's--until you feel comfortable saying it to someone. Hope you won't need to practice too long.