Communication of the Dying May 13, 2012Posted by ijwoods in Blog+.
Tags: caregiver, caregiving, communication, dying at home, dying behavior, Final Gifts, maggie callanan, providing comfort
In a blog I posted some weeks ago I talked about a dying friend who developed a communication system that helped the caregivers know his physical needs when he became too weak to talk. There’s another aspect of communication that I also feel is worth serious consideration and that is the communication of needs beyond the physical; needs that relate to the person’s emotional well being. Sometimes those needs are articulated clearly and early on, but as death approaches those needs may not be communicated clearly at all.
Several times on this site I’ve mentioned the book Final Gifts: Understanding the Special Awareness, Needs and Communications of the Dying by Maggie Callanan and Patricia Kelly. This book made a strong impression on me. Both Callanan and Kelly had been hospice nurses for quite some time and between them have accumulated a wonderful body of experience, especially when it comes to the communication of the dying. I read this book after K passed away and wished I had read it several months earlier. As a matter of fact, I liked this book so much I bought quite a few copies and gave them away to friends and people I know in caregiving situations.
Before I read Final Gifts, I learned from our doctors, and articles I found online, that as the cancer worsened, and K continued to deteriorate, there was a good chance it would affect her brain. I was told there could come a time when she would have hallucinations, become restless, search around for lost things and become disoriented. Having read and heard this from several sources I felt somewhat ready for whatever came my way.
Some confusion did manifest during the last couple of months of K’s life. Her ability to comprehend simple things was greatly impacted, such as having a clear grasp of a schedule without a calendar being physically in front of her. But that I could understand. She was losing strength so quickly it made sense to me that her brain was challenged to keep up with the ordinary day to day information flow. Even I found it hard.
I clearly remember the first, so called, hallucinatory incident we had. K woke me up very late at night and asked me if I saw what she saw. “What do you see?” I asked. She pointed towards the ceiling, “ Do you see the figures hanging from the ceiling?” I didn’t see anything and told her so. I also told her that this was nothing more than a hallucination and to ignore it, that everything was fine. I attempted to keep it light so she wouldn’t be frightened. We held each other close and went back to sleep.
This sort of thing went on for several nights although in different ways. One manifestation was in the form of a quest to find some “data” or “research material” located in the house. She was not able to clearly describe the data or material, although I could tell she had a distinct vision of it in her mind. Despite our searching, it was never found, so once again I simply considered it another delusion. I must admit I found a lot of this scary but having a convenient explanation called “hallucination” helped me take it in stride. I now believe taking on that explanation was a mistake and I could have been of more help to her.
In Final Gifts, Callanan and Kelley give ample examples of people dying who communicate important messages to their families but the families are unable to hear anything beyond the bizarreness of what’s being said. Yet through skillful questioning and a genuine interest, Callanan and Kelley are able to get to the bottom of what the dying person wants to say. For the dying the message is obviously important but it is especially important to the family who is making every effort to make their loved one’s final journey comfortable.
At times the communication turns out to be a reference to taking care of an unresolved issue. In other instances they want to see a specific person or to make sure someone dear to them is going to be okay. Other times they are letting everyone know exactly when they were going to die or that the time is very close at hand. What’s fascinating is the way the dying person communicates these things. At first blush it’s just downright strange and easy to ignore as confused rambling. But with some help from the authors you are able to get down to what the person is really saying, and it isn’t meaningless rambling at all. After reading these cases I couldn’t help feel how unfortunate it is that a lot of the messaging from our dying loved ones may be getting lost.
K’s interest in the research material was something important to her during those days. It wasn’t until she was gone ( and actually just within the last month) that I came across a packet full of research material she printed about her illness, how it affects the brain and other information. I wonder if this was what she wanted? I also wonder why she wanted it? I’ll now never know because I wasn’t listening; instead I was influenced by the notion that she was confused or hallucinating.
I remember at one point she declined to talk to me about the unusual things she was seeing. I can only think this was the case because my response was predictable. I was never harsh or uncaring, but I had clearly taken a position that would have made her feel her visions were not going to be taken seriously.
Now, having read Final Gifts, I would most certainly do things differently. I wouldn’t be so quick to label something hallucinatory. I would act more like a coach, asking questions, being inquisitive and attempting to understand from her experience what is going on. I would allow her the comfort to know that I am really listening and not pre-judging. And, not listening as someone who has all the answers, but as someone who is there with her to learn.
If you have not read Final Gifts then I urge you to get hold of a copy and read it. I’m not professing this book is the answer to everything, but it will give you a different perspective on end of life communications than the ones usually offered. It may be just the thing that saves you from allowing something important to slip by. If nothing else, it will help you to be more caring and thoughtful when the unusual pops up.
Having spoken to lots of other people with caregiving experience since reading the book, I find it amazing how many similarities there are amongst people who are going through the dying process. It’s exciting to consider that something very conscious and wondrous may be going on. Getting a grasp on end of life communication may provide us with one more way to make our loved ones, and ourselves, comforted and content during those final days.