The Stigma of Alzheimer's and Dementia: How to Cope

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People stare. Most aren't unkind, they are just curious, but when someone "different" from the norm becomes part of their environment, they often stare – without intending to be unkind.

Anyone who has cared for a disabled child knows this. Anyone who has a visible disability of their own knows this. However, people who are taking care of an elder with dementia may have more difficulty coping with the stares of the public because the person they are caring for is the person who was once their dignified father or magnetic mother. The pain of seeing others stare, not knowing how this person was robbed on his or her cognitive abilities, can bring out the little brat within us.

When I used to take my dad to his doctor appointments at the local clinic, which was often since he had to have many skin cancers removed, I would also be faced with knowing that I never knew "which dad" I'd be escorting.

Dad's dementia descended, full blown, overnight following a surgery. This dignified intellectual, who made it his life's work to be considerate and caring to others, was suddenly capable of becoming a spectacle without at a moment's notice. When Dad was sleepy, and I was wheeling him into the clinic, he was basically ignored. I could take him to his appointments in the para-transit bus, they'd wheel him off and I'd be on my own with dad, in the clinic. But a sleepy Dad was a quiet Dad, so he didn't stir much interest.

Sometimes he was awake enough to know what we were doing, but again, those times were fairly low key. Anyone paying attention could note issues, but those looks came and went quickly.

However, when Dad was deep into one of his ultra-demented states, he did provide a show. A time I remember well was when he was alert and happy as could be, which should have been a positive thing. But in that mode, he was loudly having a conversation with someone who was not there – in Spanish, his second language. He was waving to "his public" as though riding on a parade float. Of course people stared. And the little brat in me wanted to yell, "He's smarter than any of you! He can't help this – so stop staring!" 

 
This article is filed under: alzheimer's caregiver
 

Comments

 
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kimisme

Give a Hug

Oct 20, 2010

like any one suffering from an illness that can not be hidden, people are unpredictable in their reactions.
i say be your self & stand tall . other peoples opinions of us is none of our concerns. also some times our perceptions of what other people think can be inaccurate so it is in our best interest not waste our energy on such matters.
nameste

 
 

sonshineacres

Give a Hug

May 28, 2011

We are out in the public ALOT so I am having business cards printed to give to people. Mom loves to "visit" but often says things that do not make sense. I am going to put ALZ statistics on one side and a personal note from our family on the other. "We've chosen to keep MeMaw with us as she takes her journey with ALZ. Thanks for your kindness to her today! God bless you." That way, I do not have to say anything in front of Mom and it helps others awareness of ALZ. I see so many caregivers out nowadays and always try to speak to them and tell them how encouraged I am to see them continuing to love and care for their family.

 
 

bobbie321

Give a Hug

Jun 2, 2011

sonshine, that's a GENIUS idea!

Carol,
how awful to get dementia so quickly and without warning. You are pretty strong.
my mom used to do the royal wave when we drove down the street. She waved to everybody with all the seriousness of the Duchess of Cornwall. Wow, what a memory of mom. She was amazing and like I always say:
the bravest person I have ever met.
lovbob

 
 

Cat

Give a Hug

Nov 5, 2011

You learn alot about people and you learn alot about yourself when you have a parent who obviously has dementia in a wheelchair. For the most part I take her with me on all shopping &errands and we go on outings daily. I've met alot of people who were glad to have her and they do come up, especially moms with kids and talk to her. True there have been negatives, but the one thing I found disturbing is when people assume you are "paid help".

We were at a imaging center for a test that required her to drink a large glass of liquid before the CT scan. I had to coax her and she really was resistant, although some people helped out with kind encouragement and we got her a straw. Finally when she finished the glass she gave me a smile and a big hug and I hugged her back proudly congratulating her. At that point one woman who had been looking on with a smile looked confused and said - oh my god, your're her daughter.......you were so nice, how do you manage to deal with that, I'd never do that for my mom. I found it incredibly sad and a bit ironic.

Other than that I rarely care what anyone says or thinks that is negative. If they are not nice - or there is a problem w/ ADA I don't let it get to me, we just joke & keep on going.

 
  •  Comments 1 to 4 of 4 

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