I think it will be up to families to help others develop the respect our loved ones living with dementia really deserve.
Alzheimer's Reading Room
Have you ever been in a room where people are talking about you right in front of you as though you aren’t there, saying things like, “we all know she won’t do that”, and then they keep on talking.
You usually respond defensively and stand up for yourself. You jump into the conversation and say, “Hey, I’m right here”.
However, persons with dementia or Alzheimer’s Disease rarely speak up for themselves.
Can you imagine just sitting there and taking it, or worse understanding only parts of what is said?
Recently, my father had to be taken to the emergency room. His cognitive status had been stable, but in the days prior to the ER visit, his confusion had increased significantly.
I asked the ER Dr. to come outside the room so I could give him more information about Dad. In the conversation I mentioned that Dad had been increasingly confused. After the conversation, we went into Dad’s room. He had several nurses working on him and the room was chaotic.
The Dr. stood at the end of the bed and said loudly, “Mr. S., your daughter was just telling me that you are confused. Are you confused”?
Dad looked at me very puzzled and said, “I guess so”.
How awful. How insensitive of the Dr. to say such a thing without taking the time to actually assess him and then discuss it.
This insensitivity to dementia sufferers is an epidemic. If we really want our loved ones with AD to be respected, we have to respect their presence, no matter the depth of the confusion.
As family members, there are things we can do to insure the respectful nature of conversation.
Don’t allow others to talk about your loved one as though they aren’t there. You can be an advocate on your loved ones behalf by stopping the conversation and standing up for them.
When a Dr. or nurse starts talking with YOU about your loved one and your loved one is right there, come to their defense and start including them in the conversation even if it is minimal.
Take discussions outside if there isn’t a way to include your loved one in the conversation as it pertains to them.
There is no one who is too far gone to be respected in a conversation.
When you are out with your loved one don’t let others talk about them as if they aren’t there.
People might ask YOU how your loved one is doing. Take the initiative to look right at your loved one and say, “She just asked how you are doing. How are you today”?
If you don't get an answer just keep right on going to another subject. You are giving a double message. One is to the visitor that you won’t ignore your loved one, and the other is to your loved one that you respect their presence.
I think it will ultimately be up to the families to help others develop the respect our loved ones deserve.
Even further, I think a lack of respect toward the dementia sufferer contributes significantly to depression.
PK Beville is the Founder of Second Wind Dreams and the Virtual Dementia Tour. Visit www.secondwind.org to learn more.
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