The Challenges of Uncertainty September 19, 2012Posted by ijwoods in Blog+.
Tags: caregiving, dying at home, spirituality, uncertainty
Note: I took a bit of a break. I’ve been in Australia at a most wonderful retreat, camping out and laying off all electronic communications. I went through about one minute worth of withdrawal, but once I saw the nature and breathed the cool outback air I was home free. During that time I did no blogging or tweeting; I simply enjoyed the experience of life. K and I had gone to this spot several times together over the years and she loved it dearly. The photo is from there.
It always fascinates me that a baby, without any prior training, knows how to feed off its mother and knows how to smile. Without speaking our language it is expert at communicating effectively when it needs something. Seeing this helps me understand that there’s a lot built in to us at birth. It’s nothing I would categorize as “mystical” or “spiritual”, it’s just there.
In all the books and articles I’ve read about caregiving they all say that some sort of “spiritual” anchor is important for a caregiver. I have trouble with the word “spiritual” but I think I understand what the authors are trying to say; that having a foundation on something that maybe defies definition can give us great strength. I prefer to think of it as “understanding and experience”, instead of spirituality. How do we understand life? But most importantly, how do we experience it and how do we experience our selves?
I don’t know about you, but as a caregiver I didn’t find easy answers to the many situations I was faced with, but I also discovered that uncertainty wasn’t so bad. I’m not talking about practical things such as the uncertainty in handling some medical concern. For those issues I immediately called the hospice for help to eliminate the uncertainty and have things taken care of. But there were other things with no easy answers.
For example, during the last week and a half of K’s life the nurses were pretty certain that K would not be with us much longer and I saw all of them reaching for a reson why she continued to stick around. It was understandable. At that point she impossibly underweight. She was too weak and frail to talk or even lift her head. She was breathing in a way indicative of someone about to die. She wasn’t taking in any food or fluids for the longest time. So each evening the nurse on duty would tell me before leaving that this may be her last hours with us. We’ll this went on for 9 or 10 days!
K was strong. Even in that condition she had an amazing will to live. You could feel the power of it pushing through even when she was hardly with us physically. One night a nurse came to check on K and proposed that K may be holding on to something, or waiting for something, and thus was holding back from dying. I tried to think of something left undone. K’s sister was there as well and we both drew a blank. K had gone all out to ensure nothing was overlooked so that she could leave in peace and know that none of us would be burdened with problems afterwards. She had visited and called everyone she loved as well.
The nurse then asked if K was a private person. Yes, that was very much true, except when it came to me and her family. So the nurse offered that maybe she didn’t want us around her much so that she’d have a space to leave without us having to see her in that condition. Maybe her leaving was something she wanted to do privately. It’s actually not that uncommon that a person will die when everyone leaves the room so it was not an unreasonable consideration.
K’s sister and I agreed we’d give her more space and time alone. It’s not that we wanted her to go, but if she was ready and we were in the way then it was natural to give her space. So, instead of sleeping in the bedroom with her I slept in the living room. Although we both checked in on her all day and night we gave her more time alone. It didn’t feel quite right to me but I chose to go along with the nurses idea. Finally at one point I was so uncomfortable with this “give her more space” theory that I abandoned it and started to sleep in the room with her and spend as much time with her as I wanted. Although I was sleeping when she passed away at least I was there in the room. It felt right. In our relationship I can’t remember a time, except when we fought, that she didn’t want me around. My being there certainly didn’t stop her from going. I don’t see how in this situation there was any need for some explanation to her longevity. It was what it was and no discernible suffering or discomfort was evident.
As a matter of fact, in retrospect I’m sorry I had listened to the nurse instead of listening to myself in this regard. I know she meant well and that people reportedly do hang on for one thing or the other, but locking myself into some interpretation was unpleasant. Unless K was able to speak to me and communicate something it was all speculation. In the end I felt I lost valuable time with her. One thing is for sure; not sleeping in the room with her and leaving her alone for longer periods of time didn’t do a thing. Each day she was still there chugging along peacefully.
During my caregiving experience I found each day and each moment to be unique. As a caregiver I had to respond to the moment, and each moment was different even if the need was the same as the day before. Each day I needed to remain aware as to where K was on that day, not yesterday or 3 years ago. Ideas, whether they were spiritual or not, only seemed to stall me from learning and responding consciously to the reality.
Another good example of this happened after K passed away. Someone seeing my grief suggested I read a book entitled Many Lives Many Masters. It was an intriguing book by a renowned New York psychiatrist who discovered that a patient of his was capable of describing past lives, including the period in between death and birth, while under hypnosis. During this process of reliving the past his patient was able to overcome a debilitating anxiousness that drove her to seek professional help. I enjoyed reading the book but found that I was seduced by this notion of reincarnation and how those past lives explained so much of our current life. It provided an easy out to my grief.
The ideas from the book offered explanations for our relationship and her passing that wrapped everything up in a neat little package. The only problem was that in accepting those ideas I found myself losing the process of grieving. It felt terribly wrong. I could tell I was losing something valuable. The grief was real; the idea of reincarnation and all the reasons for what we do in a lifetime were not. Those ideas required belief instead of knowing. I couldn’t do that to myself so I dropped the whole idea and allowed myself to grieve. As far as I can tell, there’s nothing wrong with grieving, it seems to be a natural process of understanding and accepting loss. Circumventing it with ideas or beliefs seemed a lot like pushing away something that I would have to eventually come to terms with anyway. Though the process is often hard I feel a real evolution has taken place in reality rather than through the manipulation of ideas.
Just as the baby, I mentioned earlier, has a built in ability to handle critical situations, i.e. get food, comfort and protection, so I am finding that the important things that concern my life are already built in as well. I was shocked at how easily caregiving came and flowed through me. If you had asked me a few years ago if I could do it I would have said no, yet something inside led the way quite naturally. Yes, I had a lot of guidance from some great professionals, but when it came to seeing the needs of a loved one, what I saw and felt was that I was given an opportunity to be part of an ocean of kindness greater than myself. In that I am comforted. Entering a caregiving situation I feel it’s important to be careful of what we cling to; we may just lose sight of reality and miss opportunities that will enrich our lives and provide exceptional care to our loved ones.