Have you ever done something that you were so ashamed of, you hoped no one would ever find out? For some people it’s not something they’ve done, as much as a part of who they are that makes them feel shame. Several of the different movements in America, Black is beautiful, Gay Pride, #MeToo!, are from people who are tired of living in shame over something that they’ve had no control over.
One interesting study is to see how many times the Psalmist prays, “Don’t let me be brought to shame.” Then go on and see how many times God promises, “You will never be brought to shame.” This tells me that God understands our fear of shame and the damage it can cause. Guilt and remorse over past actions can be a good thing because it can lead to a changed life. Shame, on the other hand, is almost always bad and leads to isolation, broken relationships, addictions, and despair. (which is one reason why going to confession is such a healing action. When I look another person in the eyes and tell them my deepest, most shameful secrets and receive acceptance, love, and forgiveness, shame begins to melt away. As they say in A.A., You’re only as sick as your secrets.)
By now you may be thinking, “What does this have to do with Harriet’s dementia?” Sadly, many people who struggle with dementia, feel such shame that they isolate themselves. When they are with people, they feel shame because they can’t remember people’s names, can’t think of words, and in the middle of a sentence may completely forget what the discussion is about. Worse, they may get confused and do, or say, something completely inappropriate. Their sense of inadequacy can be magnified by being treated like they are stupid, or unable to do anything for themselves. It can take a lot of courage for people with dementia to go out in public. However, it is so important that they maintain relationships, because, the more they isolate themselves the faster the dementia will work
The other day we were having lunch with some friends. Harriet was having a bad day; forgetting words, changing words, and losing the conversation. We were talking about our trip out west and Harriet said, “One of my favorite things we did, in Seattle, was going up in the Space Noodle.” Luci laughed and said, “What?!!” I Jumped in, “It was so cool! They’ve renovated the Space Needle and now the revolving floor is glass.” “Didn’t that make you nervous?” Bill asked. “Dave just barged right across to the window, So I said, ‘You get back here with me.” I wanted to hold onto his arm because I felt a bit nervous.We were going to have dinner there, but the restaurant wasn’t finished, so we had lunch at the snack bar. Dave had a burger and I had…I had…. let’s see……” ” Didn’t you have halibut nuggets?” “That’s right, Halibut nuggets, tater tots and wine. Did I tell you what we did after we came down from the Space Noodle….SPACE NOODLE???” Harriet began laughing, and we all laughed with her. “I don’t know why I keep calling it the Space Noodle…” a sad look crossed her face. “I’m having a bad day. Sometimes I think I just need to stop talking.” Luci reached across the table and taking Harriet’s hand said, “Oh honey, we don’t care about that. We just love spending time and hearing your stories.” Harriet look relieved and said, “You’re such a good friend.” She went on, “Anyway, when we came down from…. there, we had a man on a trike…trike…I can’t think.” “Wasn’t he on a rickshaw?” “That’s right. We found out it was going to cost FORTY DOLLARS, each, to ride the monorail. So, we got on the rickshaw and the poor guy peddled it all the way to Pike’s Market. I felt so bad for him. We’re not exactly lightweights and he rode up and down hills.”
Later, we were talking about getting a new car. Harriet has wanted to get either a minivan or an Escalade. She said, “One thing I like about the Town and Country is the stow and go seats. You can just fold the seats into the floor and pack a lot of stuff back there. I’m drawn to the Chevy because…” a blank look came on Harriet’s face. She looked like she was trying to grasp some thought. After a couple of seconds, she asked,” What were we talking about?”
Harriet has good days and bad days, and sometimes she will be having a good day, but something changes and it becomes a struggle to have a conversation. As her Caregiver I try to help, but I must be careful not to jump in too fast. For example, when the doctor asked her a question about her medication she hesitated to answer. I started rattling off the meds I remember which, she told me later, only added to her confusion. I need to remember that she doesn’t think as quickly as she used to and needs a little time to process the question. On the other hand, if I allow her to struggle to find the right word for too long it makes her feel embarrassed and too much embarrassment leads to isolation. I try to help, when I see her struggling, without taking over the conversation.
You may have noticed that she said it cost $40 each to ride the monorail. Obviously, that is not the right price. However, I have read, and heard from instructors, that it does no good to correct or contradict someone with dementia. It could be that she just misspoke, or she really believes that it does cost $40 per person. In either case, it is usually best to just let things like that slide.
You might have also noticed that the third time Harriet spoke of the Space Needle she didn’t try to say the name but said, “When we came down from…there.” People with dementia often use alternative words when they can’t remember, or mispronounce, a word. It shows that no one likes to be laughed at, or feel embarrassed, or be ashamed.
As a Caregiver I will do well to apply the Golden Rule, Do to others, what you would have them do to you, to every situation I face. Part of my job is to do all I can so that Harriet never feels ashamed but feels comfortable going out into the world. With God’s help, I will always see to it that she is treated with the dignity that she, as a daughter of God, deserves.