The Dance of Dementia

Caring for a person with dementia
The Dance of Dementia. Getty

Commentary by Stan Goldberg, Ph.D.

Caregiving is difficult and ranges from rewarding to devastating. Some people believe without adversity there can be little personal growth. Few things offer as many opportunities for growth as does caregiving. And caring for someone with dementia may be one of the most difficult caregiving situations. Judy Unger shares her feelings watching her mother’s identity change as dementia progresses.

The powerful mother I remember has left me forever. I now have a very anxious mother who requires tremendous coaching and encouragement to get through her day.

The Dance

What started out as a slow waltz has progressed to a much more frenetic dance. My mother doesn’t even know the dance is going on, except she is very frustrated by her difficulty to find her words. I don’t want to see my mother upset so we’re dancing around the dementia. This story is about an outing with my mom where her decline became more apparent to me.

The Outing

 I picked her up at her nursing facility to take her to a hair salon. It was the week before Mother’s Day. I wanted her to look beautiful and having her hair colored was something that was always important for her. Her roots were several inches long and stark white because she had been in the hospital for five months.

When I walked into the building, the nursing supervisor handed me an envelope.

She said, “A nurse turned in this money from your mom. It is against our policy for anyone to tip.”

My mom was in her wheelchair listening and did not respond; she looked tired. I told her, “Mom, I’m taking you to have your hair done. This is going to be wonderful outing!”

As I wheeled her to my car I said, “Mom, you heard what the nursing supervisor said, didn’t you?

You can’t tip the nurses here – it could get them fired.”

She said, “I didn’t tip the nurse. She stole it.” Another dementia red flag!

When I started my outing with my mother I left my house filled with purpose, energy, and abundant patience. I struggled putting my mother’s heavy wheelchair into my truck and was proud that I remembered how to fold it.

I drove one block to a nearby hair salon. I set up her wheelchair and pushed her into the salon. I told the stylist, “My mother survived being on a respirator for two months and it’s a miracle she’s here today.” I remember how I dreamt of this moment when she was in a hospital bed with a trachea tube in her neck.

I helped my mother into the styling chair. She gripped my arm tightly as I patiently lowered her down. The stylist was so kind that I wanted to cry.

My mother’s teeth were clenched as she tried to smile. She wanted me to see how happy she was; but she was not feeling well at all. She said, “I am so glad you are here. I feel so safe with you.”

When she said that, I felt like she was my child and I was an inexperienced mother. I was not equipped for this! I pretended to be confident and she pretended that she didn’t see me pretending. We were dancing again.

The stylist was ready to cut her hair. Suddenly, my mother began searching for her purse; it was her security blanket. Unfortunately, she had left it at the nursing home; she asked me to bring it to her. I drove to her facility and quickly hurried back. Now I was getting tired.

Two hours later, the stylist was finished. My mother let out an audible moan as I helped her into my car. She began looking for her glasses. I went back into the salon to look for them on my hands and knees under the chair where she had sat. It turned out that they were in her purse.

Running the Dementia Marathon

I saw such a strong image at that moment. I was running a marathon – I could see the finish line. However, instead of everyone cheering, everyone was crying. Was this the end? Was this the last time I would take her out of her facility? Was this going to be my mother’s last Mother’s Day? How could I be so honest as to even write those words?

Moments to Remember

I remember that before my son died, every moment was treasured. I know I won’t have my mother forever. But just like there is pain with those “firsts” in bereavement, there are those “lasts.” The “lasts” are the things you know are almost over.

Only six months ago, I often took my mom to the movies with me. Her regression to that of a younger child has been occurring ever so gradually. Before that, she was more like a teenager. We could still have wonderful outings together.

Sometimes, when I dropped her off at her facility, I felt like a parent waving a child off to school. She would say goodnight, kiss me, and then gingerly trudge off gripping her walker. I would watch her leave me while sitting in my car. I was wistful, because I knew that her independence wouldn’t last. Now every outing with my mother was unbelievably difficult.

With relief, I brought my mother back to her facility. I gently pushed her wheelchair down the hallway near her room. Even though her eyes were closed and she was unresponsive, all the nurses commented at how beautiful her hairstyle was. I waited while they changed her diaper and put her on the bed.

I kissed her goodnight before leaving. Her eyes fluttered slightly and she whispered, “Thank you.”

I held onto that as I cried in my car driving home.

Continue Reading