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Being There

When I had my first cataract removed, I couldn’t drive home and I couldn’t lift anything for 3 days. Kent had to take over driving and in our home. He did really well at it. I had prepared a big pot of soup before I went in for the surgery and Kent had agreed to not drive on the freeway. Both of these helped Kent to manage things in our home for several days. I know that he was proud of himself and he loved the role reversal.

I tried to learn from that experience of Kent being there for me. I am working very hard at having him do more. Oftentimes it is frustrating because he will forget to do what I have asked. I have learned that things hurt my feelings because of what I make it mean. For example, when Kent would forget to do something I assumed that he didn’t care. Now that I am aware that it doesn’t mean anything, it doesn’t upset me, most of the time. Kent does care, but he has a disease that affects him cognitively, causing him to not take initiative and also affecting his “self-awareness.”

Human beings are “meaning making machines.” Very often we make things that happen mean something. Then the meaning that we assign to it hurts our feelings. I always assumed that if Kent didn’t listen to what I said, that it meant that he didn’t care. Therefore, I always listened intently to what Kent said. I realized that about myself in a workshop that Kent and I took. The night of the workshop, Kent woke up in the night and started talking to me. He was mumbling.

If he was going to the effort of telling me something, then it must be important. So I kept saying “huh?” I couldn’t understand him and I was frustrated because it must be important or he wouldn’t keep saying it. After several attempts I finally understood him. He said, “I’ve got to go pee.” That made me laugh. What he said wasn’t important at all. I laughed and laughed to realize that what he was saying wasn’t important. Up until then I assumed that everything that came out of someone’s mouth was important, including what I say. Many times things people say aren’t that important. Many times we are saying out loud the thoughts that go around in their head.

My family is that way a lot. They talk a lot. Kent not so much, but my children talk on and on. I have learned that I don’t have to listen carefully to what they say. But, once in a while they say something that they want me to hear. Figuring out when it matters to them and when it doesn’t can be complicated. Michael has a lot to say. But, because of his speech impediment, many times I can’t understand him. Even if it’s unimportant he wants to be acknowledged and when I am faking it (responding when I don’t really understand) he can tell and he gets frustrated.

It’s possible that anyone with an impaired frontal lobe, including our children and teenagers whose frontal lobes are still developing, don’t pay attention to what they say. They say many unimportant things out loud. In fact, when any of us are out of balance, and our frontal lobe isn’t in charge, we say things that aren’t thought out. Maybe even hurtful things. It takes maturity and wisdom to realize that about ourselves and others.

We had a team come into our house the other day to inspect our bed. We have a bed that you can elevate the head or feet with and it was acting up. The regular person, whom we have worked with before, is very appropriate. He is concerned and says thoughtful, caring things while he addresses the problem. This time he brought someone with him that was in training, a potential employee for the company. This person had something to say, all of the time. Everything she said was either a repeat of something someone else had just said or unnecessary comments. She was being sweet but her comments were over the top. The term for these kind of comments is “impulsivity.”

In the past, someone like this would frustrate me. I would want to say, just be quiet and let the person in charge talk. You’re here to learn and listen. Due to all that I have learned from my family with Myotonic Dystrophy (DM), I have learned about the idiosyncrasies of people and it no longer bothers me. I’m just intrigued at the variations in our brains. Being surrounded with a family with these atypical variations can sometimes wear on me. If I didn’t understand DM, I might be less patient about it.

We all have varying degrees of impulsivity and varying degrees of “self-awareness.” My father, who has dementia, struggles a lot with both impulsivity and “self-awareness.” His doctors manage his medication appropriately and they prescribe medication to keep him calm. This helps a lot with his impulsivity. The other day he ran out of his blood-pressure medication. It should have arrived but no one was monitoring him closely enough so he went for a day without it. It wasn’t dangerous, in other words, his blood pressure didn’t get very high, but with his dementia he wasn’t aware that his increasing blood pressure was giving him a sense of anxiety.

He called my brother and started making demands on him, pretty illogical, inappropriate ones. My brother was having a hard day and he over-reacted to my father. They had a verbal confrontation over the phone. Once my brother had calmed down he was able to tell himself that my father has dementia and can’t be expected to be appropriate all of the time. He also had to be kind to himself and recognize that he had been having a hard day.

The causes of this scenario between my father and brother are pretty obvious. But don’t we all have days like this and need to be kind or apologetic to others and also need to be kind and forgiving to ourselves.

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