What People in Dementia Say…and Don’t Say

My path has taken me to quite a few memory care communities. People with advanced dementia have made all sorts of comments to me.

About once a month, I am asked when my baby is due—although I’ve never been pregnant. Ever.

I’ve been told I have the nose of a beautiful Jewish woman.

Someone once said, “You look just like my daughter. She’s a horrible bitch who never visits me.”

A while back someone seemed to have me mixed up with Hillary Clinton. I think this was a result of confusion between a TV news story in an adjacent room and real life. It’s not like I was wearing a power pantsuit.

A guy at a community I visit once a month has told me that either I’m really busy or try to give the message I’m really busy. He knows this because I usually wear my hair pulled back into a ponytail.

Sometimes people with dementia try to guess my age. When they say 50, I don’t take it personally. After all, they might have poor vision as well as compromised judgment. However, I forget about that poor vision and compromised judgement when they guess I’m 25.

This summer, a woman with dementia looked me up and down before saying, “Look at that thing. It’s so pretty.” I lived on that compliment for a week.

Once a lady with Lewy Body dementia was convinced I was sent by the devil, and she insisted that the staff remove me before I burned down the building. She had tears streaming down her face. I can still picture her shaking in terror…

I have emotional reactions—positive and negative–to what people with dementia say. However, lately I have been more in tune to what people with dementia can’t say.

As dementia progresses, people lose their verbal skills. To me, this is one of the cruelest parts of the journey. The thought of being unable to express myself verbally terrifies me.

I see people with dementia crying, and they are unable to tell us why. They might be in pain. We can’t determine where the pain is occurring and what’s causing it. They might be scared. We don’t know what’s scaring them.

Although connecting with someone who can’t speak can be challenging and time-consuming, that connection is incredibly rewarding when it occurs. Sometimes it occurs through touch. Or through a smile. Sometimes it’s music that helps us reach an individual who can’t speak. When we reach them…it’s something. When we are able to decipher a message that comes without words, it feels good.

A woman in a wheelchair once reached out to me as I passed her in a nursing home corridor. At first I thought she was trying to strike me, and then I thought she needed something. I asked her if she wanted me to push her down the hall. She grunted in frustration and reached out to me again. This time she grabbed onto my dress and tugged on it.

I asked her if she wanted me to get a nurse. She stared at me, obviously frustrated with my lack of understanding. She grabbed my dress again. This time she was almost petting the material like it was a cat.

“Do you like my dress?” I asked.

She broke out in a wide grin and nodded. That was it. She needed to tell me that she liked my dress. I immediately liked any woman who would go through this much frustration just to compliment another woman on her clothing.

I told her my “secret.” It is a dress from Land’s End, and I actually have at least seven of the same dress in different colors and patterns. (If you work with me, you’ve probably noticed this…I’ve no shame about it.) I told her that I had finally found a work-appropriate dress that I didn’t have to iron, so I was going to get maximum mileage out of it.

She gave me a huge smile. She understood.

As I walked away, I felt like a million bucks. It took a little extra time on my part, but her compliment was worth it. She had made my day. I went home and ordered one more version of the dress from Land’s End. This time it was in red.

13 thoughts on “What People in Dementia Say…and Don’t Say

  1. I learn so much from you. So glad you’re back. I missed your blog. Hope your summer was awesome. Thank you for all your insight.

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  2. Yours is one of the few dementia-related blogs I shall continue reading, now that my dear mother with Parkinson’s related dementia has passed away. Your posts are beautifully written and have uplifting messages I can share with my friends at Memory Café where I continue to volunteer. Thank you for being a supportive source during the time I was my mom’s caregiver.

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  3. Missed you Elaine!

    Glad you are back! You make me think about slowing down to spend a little more time in every situation to see if I can’t do better! You also make me laugh! You are a great story teller!

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  4. Dear Elaine, I am Dan Roger’s mom and also have a father with advanced dementia. Megan suggested I read your blogs and I appreciate your insights and helpful suggestions. I find myself nodding and smiling at your observations. Thank you for helping me go through this journey with my father. Gail Bowers

    Sent from my iPad

    >

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  5. Glad to see you are back Elaine! Thanks for a thought provoking post. My husband struggles with word finding. I’m pretty sure he has primary progressive aphasia. His word finding problems are with nouns. Add to that memory loss, and he definitely has challenges.

    Knowing him so well makes it easier for me to guess what he is trying to say. I can only imagine how much harder it would be to someone who doesn’t share a history with the person.

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