Jun 26, 2014

It Felt Like Dotty Was Slapping Me In the Face

I couldn't understand at first why Dotty was continually saying mean things to me, it just felt like she was always slapping me in my face.

By Bob DeMarco
Alzheimer's Reading Room

Previously I wrote, Always Be Kinder Than You Feel. Under the article there are 20 comment (so far), and they are all much longer than usual.


In the article, you will read words like: pray, anger, hope, crazy, mean, cry, patience, verbally abused, difficult and a lot more as Alzheimer's caregivers discuss and sometimes lament their current fate. The words are revealing.

I know how you feel - I cared for Dotty for 8 and a half years.

New readers might come to the conclusion that it was a bed of roses or easier for me. Nothing could be farther from the truth.

I can break my caregiver effort into three distinct parts.
  • The period of greatest burden (18 months)
  • The period of lessening burden, and the discovery of an effective care model that workrd (18 more months).
  • And finally, the journey down a path that can only be described by one word

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It wasn't easy. Discovering how to understand, cope and communicate with a person who is deepening in their forgetfulness -- it is difficult and trying.

It takes time to comprehend that persons living with dementia are

Deeply Forgetful

Nothing more nothing less.

I learned there are two parts of the dementia care paradigm -- the caregiver and the person living with dementia.

Person living with dementia are hard  to understand and comprehend.

Now for an example of my own discovery.

At night, when it was dark, my mother was continually saying,

I Want to Go Home.

She wanted to go home to a place that she hadn't lived in more than 80 years. Home with her parents in south Philadelphia.

Dotty was also famous for saying, "get out, I don't need you, I don't want you here".

Every time my mother said, I want to go home it felt like she was

Slapping me in the Face.

I couldn't understand. And worse, it made me angry, frustrated and sad.

Instead of listening to my mom I made it all about me,

My Feelings.

How could my mother say such a thing when I was taking care of her 24 hours a day, 7 days a week?

Why didn't she appreciate  what I was doing for her? Why didn't she appreciate my sacrifice?

It hurt.

But then I made it to Alzheimer's World.  In Alzheimer's World you listen. You think. And most importantly,

You Wonder Why?

Once I started asking myself Why,I soon discovered why my mother wanted to go back.

My mother wanted to go back to the place where she felt happiest, safe and secure. She wanted to go home to mom and dad.

I understood this after my mother told me two stories.

In the first, she went to work with her father. He worked as a truck driver and made delivers to corner stores. As the story unfolded my mother told me how the store owners were kind and how some of them gave her a piece of candy. She also told me the truck my grandfather drove was pulled by a horse.

A horse? This was a story I had never heard. It delighted me. It also told me that the story most likely took place around 1922. She had not forgotten this part of her life.

In another story, my mother started to tell me about how she would lie in bed with her mother, and her mother would sing to her. This touched me in a way that was hard to imagine. Another story by the way from the 1920s.

I learned a great deal from her stories over the the years. They almost always contained the answers.

I learned how uncaring I was when I complained to everyone  that would listen that she wanted to go home. I made it about me.

I learned that my mother was confused. She thought she could go back to the place, Philadelphia, and everyone would be there for her. It would be safe.

Why couldn't I understand, comprehend, how she was deeply forgetful, scared and confused?

The reason for this is simple and straightforward -- it is very hard to do. And, you will only be able to do it if you

Look Beyond the Obvious

Start to Listen Closely to Understand What They Are Really Saying

And, Wonder Why?

Each caregiver is filled with kindness and love. If you are on the job then you have these traits. Let them come out.

Start thinking, and more importantly start feeling. Feel it. Wonder why.

I love and admire every Alzheimer's caregiver in the world.  And, even though I have never met you, I can still say that with a great degree of confidence.

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Bob DeMarco
Bob DeMarco is the Founder of the Alzheimer's Reading Room (ARR). Bob is a recognized expert, writer, speaker, and influencer in the Alzheimer's and Dementia Community worldwide. The ARR Knowledge Base contains more than 4,700 articles. Bob lives in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room