End of Life Lessons from Dad: Lesson #4

September 22, 2016
Denise Hyde

dad-decorationsLesson #4 from Dad is about the power of communication. We definitely experienced some poor communication during our journey with Dad. Part of it was the communication that should have happened, but didn’t. For example, when we said “no” to a medical procedure that went against Dad’s wishes, the doctor would never turn around and say, “Okay, then here is what we can do instead.” We really needed that conversation to happen, but when we realized it was missed, there was no doctor in sight to have it with. Part of it was healthcare professionals who were doing their best, but not realizing how their tone of voice and abrupt words caused us pain. Part of it was that those we relied on for communication never really connected with us; they said what they had to, did what they needed to, and then disappeared for hours. Eventually, this poor communication made us feel like we were being fed just enough information to keep us out of their hair, which made us suspicious about what they were not telling us. It was interesting how quickly the poor communication broke our trust with the very people we needed to trust the most.  I wonder how many times that happens in other caregiving relationships?

The really amazing part of communication was what was happening with Dad. Now, realize that over the course of his 21-day journey, he was probably only “awake” a few hours at a time every couple of days; most of the time he was sleeping. Even if his eyes were open, they did not always focus on our faces or look around. It was quite easy to get lulled into believing that he could not hear or understand us and that our job was to just be there. Luckily, I have had some very wise teachers in my life journey, and we did not get caught in the idea that he was ‘gone’ like people do when their loved one is non-communicative. We looked at each other and said, “He’s right here. He needs to hear from us.” We played music and sang along with it. We moved Dad’s arms and legs to the music. We all took turns sitting and talking to him and each other at his bedside. We told “Wayne stories” which are always a hoot! My brothers and I joked with each other like we did when we were kids. He was there and he was listening; I am convinced. When the doctors and nurses were offering us medical options that went against his will, you could see his face contort and his body movements increase, indicating his disagreement with the conversation. He was communicating with us.

Dad taught me that as long as someone is physically a part of our reality, they need to be communicated with. They also need to be listened to. To communicate effectively with individuals who are in this phase of life, you have to know them well. Now, they are not going to tell you their life story, but at some level, in some fashion, they are going to communicate. We have to take the time to slow down and really listen, not just assume that they cannot respond. A doctor told us that Dad was “locked in” meaning that he likely had brain activity going on, but could not effectively express it outwardly. We clung to the opportunities we had and made the most of each day we had left with him. We will never regret the time we had left to tell him often how much he was loved and will be missed.

How many Elders, every day, are physically present in the world and no one spends time communicating with them? Maybe they don’t have the blessing of family close by or friends who are willing to sit with them. How often do we give up on talking to someone who is sleeping most of the time, or living with profound dementia? How often do we just turn on random music and leave the room assuming it is enough? I am wiser about this today than I was a month ago thanks to Dad, but I still have much to learn. How about you?

1 Comment. Leave new

After a very long progression of COPD my mom stopped eating one day. For 7 days we were present with her and my dad and each other- all 23 of us! We sang to her and told old family, held her hands and rubbed her feet. Although my dad asked, she never verbalized that she was “done”- she just stopped eating. The night before she died my dad wrote her eulogy. He read it to us at her bedside. She was not really responsive at that time, but she “heard” a beautiful message about her from the love of her life. When she died the next morning my sister said she could go because she had heard from dad one last time how he felt about her. I treasure the last week we all shared with her and with each other.

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