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Walking the gray lines October 10, 2014

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fall leavesIt’s a day away from the third anniversary of Kris’ passing and over the last few weeks I find myself again reliving and reconsidering what took place.

One thing I discovered while being a primary care-giver was the unrelenting number of situations for which there were no easy answers, yet decisions needed to be made. Even no decision was a decision. Doctors and nurses have seen quite a bit, are well trained and are confident about what they are doing, but they don’t necessarily have all the answers. Clergy have also experienced quite a bit but many of their answers require belief. As a caregiver I was at times left in gray areas having to make decisions based on my own research (thank you Google), experience and observations.

Growing up I remember hearing quite often that we come into this world alone and we leave alone. Although I could think of instances in which this didn’t seem true (twins for instance) I could understand the essence of this saying. Over the years I have experienced that taking time to go within myself is definitely an individual endeavor (some people may want to call this “meditation”). When I go within no one gets to come along nor has any idea what’s going on for me. I have always enjoyed how this non-activity can make me feel complete despite the lack of any external stimulation. Kris and I shared this passion for going within. It wasn’t something we did as a team, it was an individual undertaking and the experience was individual as well. And though we didn’t discuss it much it was the basis for a deep bond .

I couldn’t help notice that as she was becoming increasingly ill that she spent a lot of time within herself. She never announced it. To anyone looking in, it would have looked like she was sleeping, but I could feel something familiar from her, and it wasn’t sleep. Occasionally I would interrupt her to make sure she was okay. I’d often ask if she wanted something entertaining, like for me to read her a book or play some music, but she almost never wanted anything. She was quite content to just lay there in silence for hours on end. The peace around her was so attractive at times I would quietly join her.

During these times, while lying next to her, I found myself contemplating what it would be like to pass on. What would I be feeling? What might my emotions be? One thing was clear, the feelings and experiences would happen to me alone. Even if someone was holding my hand, I would have to go through this process alone. Whenever my time comes it is going to be my own personal journey, just as this was hers. But, what Kris showed me was that it was going to be okay. It seemed as if some biological and psychological changes were happening to enable her to be accepting and ready. The news around us was no longer of any importance or interest.  I remember one morning learning that Steve Jobs died, but it was far too trivial to share with her.  She was simply being pulled gently away from me and everything else.

So what’s the proper balance for engagement? On one hand we don’t want a loved one to feel alone and uncared for, on the other hand I felt that Kris needed plenty of space so she could transition comfortably without distractions.  This transition, for lack of a better word, felt “holy”.  It commanded respect. It was a facing of reality. It was a process that no money, influence or power could overcome indefinitely.  It was something I had to bow to and feel my smallness. It was overbearing, mysterious and, in its own way wondrous. Wondrous because it was taking what we might consider frightening and was making it natural and gentle. The journey within may be done alone, but it’s not lonely.

Even though I was often by her side it was unclear if she really had any awareness of me. The body was there, but what I loved most about her was slipping away. Awareness seemed elsewhere with an occasional drift into our world to flash an acknowledgement with an angelic smile. She was going, but was I ready to let her go?



It’s only in retrospect that I wonder about this. At the time it was very clear that I had to give her room to be alone and develop legs to walk into a new world. Where is the balance? I’ll never really know and it’s impossible to ask anyone who’s made the transition. But as I walked that fine line it felt right to give her plenty of time alone so she could build momentum in the right direction. This seemed like the most helpful and respectful approach I could take. I believe from observing Kris that this aided in her own preparations for the final transition while providing enough love and support so she felt physically and emotionally safe to do what she needed.

This particular consideration probably doesn’t come up in the majority of caregiving situations. For me it did. But this was just one of many challenges that appeared each day and required my involvement. What makes these decisions so hard is that we don’t want to cause our loved one to suffer any more than they might already be. Yet while caregiving for someone dying we are often faced with things that are not exactly black and white.

Our Life is About Life June 6, 2012

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While talking to some friends the other night I was reminded about how part of the hospice team consisted of someone to help with the emotional/spiritual side of things. It got me thinking about how K and I had never called upon this person for help, at least not while K was alive. Afterwards I did arrange an appointment for grief counseling which was of big help.

The fact is, that while K was alive neither of us felt like we needed a conversation about spirituality or about anything we were experiencing emotionally. Looking back we were amazingly grounded.  This is one part of our journey I feel very satisfied with. A lot if this “groundedness” had to do with our involvement in the development of our own personal peace and appreciation for life for many years. Our common understanding and experience played a big hand in the way we related to each other and to what was happening. Even during the most difficult times it gave us a base of understanding from which to get over whatever we encountered.

It’s one thing to know that everything will go fine on a physical level, i.e. to have the power of attorney in place, have the assets divided up properly, etc., but it’s another thing having to face leaving the world and head into the unknown. It’s an amazing sensation to have our mortality so exposed and to feel the irreversible power of it. Our perspective changes considerably. What was important yesterday becomes trivial today. (more…)

The Comfort of Silence March 31, 2012

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When my Grandmother was facing her last days from breast cancer she was being cared for in the hospital. Her children had passed away before her (my mother was one) and her husband had passed away when they were young. I went to visit her one day and she was in that nebulous state which I don’t know whether to call a coma or just an internal world in which it is easier to rest and gradually withdraw while the outer world passes by.

The TV was on in the room and a golf tournament was playing. A golf tournament! I don’t think my grandmother played a stroke of golf in her life and I was certain she had no interest. I suppose the thought someone had behind turning on golf might have been that the commentators talk quietly but at the same time provide a way to fill the silence in the room; still, it just seemed so odd.  I couldn’t help think about how often people show discomfort with silence and how it would be easy to assume someone dying has the same discomfort.  Anyway, I doubt the golf tournament was providing much entertainment for grandma.

I noticed with K that as she got weaker she would spend a lot of time in a semi sleeping state. One afternoon she had been lying on the bed for 3 or 4 hours. I asked her how she was doing and she responded positively; she was in fact awake.  I thought she might want some entertainment, but she didn’t. She was content to lie there; no radio, no TV, no book, no music. I respected this and felt I understood it as well. (more…)