Frustration

When I got up this morning, I was wondering how I would start this post. Then I checked in on Twitter and saw the following tweet from @theDAWNmethod (Judy Cornish).

One of the most frustrating things about having #dementia is waking up one day and finding yourself unable to perform a task or use a skill that has been effortless since you were a child.

It closed with a graphic that said, “Be Kind – Everyone You Meet is fighting a battle you know nothing about.”

Nothing could have been more appropriate for me to hear. It was a day for the sitter. That meant I was going to be concerned about getting Kate up and dressed in time for us to have lunch together before my appointment to donate platelets at the Red Cross. I started the process with a little soft music for about ten minutes. I had washed clothes and made a couple of trips to the bedroom to put them up. I noticed that Kate’s eyes were open, and she was in a good humor. I was encouraged.

When I had finished, I went to her bedside and told her I would love to take her to lunch. She said she would like that. Everything was going so well. I got her to the bathroom. After using the toilet, I told her to wash her hands and brush her teeth before getting dressed. She walked to the sink. She started to wash her hands without soap, something that is becoming a habit. I put some soap in her hand and told her to wet her hands and wash them. She didn’t know what to do. I tried to show her by motioning with my own hands. She still couldn’t understand. Finally, I washed them for her. It was only later that I began to think about the frustration that she must have felt. My instruction to “wet her hands and wash them” was itself confusing. It involved two separate steps. I know that is too much for her. In my haste, I forgot.

In the process, I showed my own frustration as I tried to get her to understand. I don’t recall what she said, but she snapped at me. Just as quickly she apologized; however, our frustrations weren’t over. She was much slower getting going. That meant getting dressed took longer than I had anticipated which added to my frustration. She wasn’t eager for my help, and I left her for a few minutes while I went to get a few things done before leaving. I noticed on the video cam that she had gotten back in bed. I rushed back to the bedroom and reminded her that we getting ready to leave for lunch. Although I tried to hide it, she sensed my frustration. That upset her. We rushed more than either one of us wanted and were later getting to lunch than I had intended. I called the sitter and told her we were running late. She was waiting for us when we got home. Then I rushed to brush my teeth and leave for my appointment. The good thing is that Kate seemed glad to see Mary. When I got home, they were seated on the sofa in the family room looking at one of her family photo books.

Lesson learned: She needs more time to get ready now. I have to get her up a little earlier.

Something else happened at dinner last night that also relates to the tweet I quoted above. She had tortelloni. The server brought her a cup of Parmesan cheese. Kate loves lots of it. The first thing she usually does is pick up the cup and pour its contents over her pasta. Last night she didn’t. I said, “Wouldn’t you like some cheese on your tortelloni?” She gave me a blank stare. I picked up the cup and said, Just pour this on your pasta.” She couldn’t understand. I did it for her.

She is increasingly forgetting the names of common things. I sometimes experience a moment of frustration when she doesn’t remember something she ordinarily would know. I have a momentary sense of disbelief that she can’t remember. I want to say, “You know, you just . . .” Then I have to tell myself, “Of course, she doesn’t know. She has Alzheimer’s.” Can you imagine what it must be like for her living in a world in which there are so many strange things and ways to use them? Living with Alzheimer’s presents continual moments of frustration for both the person with the disease and the caregiver. I am constantly learning and need to be a better student.