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Distracted From Ourselves November 17, 2012

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I was just in Brighton, UK, on business for a week. Winter is not exactly the best season to be there but I do happen to enjoy Brighton anytime of the year. It’s one of those cities where you can live perfectly well without a car. The public transportation is prolific, regular and predictable and many areas of town are pedestrian biased with charming surroundings. I usually leave there feeling more fit and healthy than when I left. The cool, moist sea air cleans out the dust I’ve accumulated in my lungs from desert living and there are enough hills to get one’s heart pounding. Great food abounds. Yet unlike NY or San Francisco, Brighton center is smaller and more manageable. There are many narrow streets filled with one-of-a-kind shops and surprises around every corner or tucked away in some unsuspecting alley way. People fill the streets in the evenings and all day on weekends. Friends sit outside of the pubs or cafés bundled up chatting while families stroll along looking like they are having a great time. Sounds idyllic, doesn’t it?

As is my routine, I went out early each morning when the streets are empty, to have a brisk walk and to get caffeinated at one of the coffee houses I frequent. After six days of gloom and rain the sun finally broke through one morning. When the sun peeks out, even a tiny bit, it’s celebrated as if it were the liberation of a country from years of bitter tyranny. Even in 48 degree weather people will be out in droves wearing shorts. I even saw a couple of people trooping around in nothing more than a T-shirt that day.

After my morning coffee, I left that wonderful section of town, called the Lanes, and made a left turn onto a main road almost colliding with a young woman rushing to get somewhere. She was wearing rather large headphones connected to a device hidden in her pocket; a smart phone I suspect. She seemed decisively cut off from the world. I was barely noticed and not acknowledged. It got me thinking.

My thoughts on such walks are usually all over the place but in their own fascinating way they always seem directed towards working things out or trying to come to greater understandings. For instance, I was planning to bring K along with me this year and while walking around town, every time I’d pass something that I really liked, I would get excited about sharing it with her – that is until I realized it will never be. I kept going through that thought process over and over again understanding a little more deeply each time that it would never come to pass. My thought pattern was part of a greater process of learning to accepting my loss and no direction was needed from me. In the quiet, distraction free periods of my walk the internal work I needed to do happened quite naturally. And it felt so good.

There was an article I came across recently about how, according to one nurse who specializes in caregiving end of life patients, grieving is a process in which a person seeks equilibrium. Normalcy.  She even refers to the bereavement stage as the creation of a “new normal” ; a kind of homeostasis. I really like that word homeostasis. At its Greek root “stasis” means “standing still”. It’s while standing still that one can observe with greater precision what’s going on.

We live at a time when it’s far too easy to distract ourselves, be in constant motion and not allow a natural inner process to happen. The result is that we give up a lot.  With the process I went through being a care-giver and a constant companion to another human being, I certainly could have benefitted from more quiet time with myself. There’s a time for distraction, but the insights that come as a result of “being still” are invaluable. It’s sometimes scary to be silent and alone with one’s self, but maybe it’s because we’ve made it such a foreign part of our lives. I remember times visiting my father and how uncomfortable he would be if we weren’t discussing something or busy. I spent a day with him once and I swear he spoke virtually non-stop from 9:00 am in the morning until I dropped him off at his home later that night. Whenever there was a moment of silence he just had to break it. On his way out of the car he said to me “You talk so little!”

It is so easy with our myriad devices to plug in, turn on and tune out around the clock whenever the discomfort of silence overtakes us. Ha! I not only travel with a laptop and smart phone now, but I also carry a tablet! How nuts is that?

Now that K is gone I find myself spending plenty of time alone and in complete silence. In the quiet I find I can more easily review what happened and see things that I hadn’t noticed before. I don’t try to do this, it’s automatic when not distracted from myself. I am now seeing things that could have made the end of life process and care-giving even more meaningful and warm for K and myself. I could have seen it then if I had given myself the space. Now it does no one any good. I don’t feel I’m beating myself up over this, I’m simply recognzing the value of the time we can spend with our self and how much it can reveal to us.

Our natural internal intelligence is an incredible gift and seems to have an extraordinary ability to take in a wealth of information and, if left alone, will in some mysteriously way make sense of it and show us our next step or reveal what it is we’ve been trying to see all along. It really amazes me. Have a happy Homeostasis.

Just the Right Environment July 9, 2012

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When it comes to going out to eat, whether it be a restaurant or someone’s home, many people find that the environment plays a big role in the enjoyment of the food. I once heard a comment attributed to a friend that when asked what he thought of the restaurants in New York City he said that it was hard to enjoy food when eating in a toilet (sorry New Yorkers, no offense meant). I never found out if he actually said this but it definitely got a laugh out of me and a nod towards the spirit of the statement. So what about the environment when we are caregiving? What about the environment when a person is going through an end-of-life process? (more…)

We Can’t Reverse Time June 21, 2012

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The story I’ve heard told of Buddha was that as a prince he had been sheltered from seeing the suffering of the world. Then one day, having left the palace for the first time for a ride around town, he discovered old age, sickness and death. Seeing these things overwhelmed him so much with grief and compassion it ignited his journey to find the truth.

A number of years ago K introduced me to a wonderful couple, a husband and wife, whose company I always enjoyed. I’ll call the husband Dave and the wife Elyce. At one point Elyce was diagnosed with cancer and began to go through numerous treatments. We would run into both of them from time to time at various events and check in on how things were going. Elyce and K communicated privately on what seemed a pretty regular basis and most especially during the last year of K’s life. About month ago Elyce also passed away. It was painful for me to hear because I felt very connected to her battle and thought she was overcoming it. But I also couldn’t stop thinking of Dave who spent many years supporting and caring for her.

From where I sat it looked like a long and tough fight although whenever you saw them you’d hardly know it. Their attitude and sense of comfort never gave it away. Now with Elyce gone I couldn’t help wonder if Dave was experiencing the same things as I did. I really wanted to communicate with him, no matter how awkward it might be. (more…)

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…)

Listen May 22, 2012

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I have never met a person whose greatest need was anything other than love. Real unconditional love.” 

Elisabeth Kubler-Ross from her book, The Wheel of Life  – A Memoir of Living and Dying.

I recently received a copy of The Wheel of Life, by Elisabeth Kubler-Ross, in the mail from an unidentified source. Although I am familiar with her work and have seen her book, On Death and Dying, on every recommended book list that concerns itself with caregiving, I never read it. I suppose that’s due to some contrarian tick that I have. Nonetheless, here was a gift in the mail from someone who obviously thought it would be of help to me so I thought I should give it a shot. Since I had a round trip flight to Minneapolis this weekend the flight seemed like the ideal time to dig into it and see if I really liked it. And indeed I did. I read the entire book. (more…)

Communication of the Dying May 13, 2012

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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. (more…)

Morphine May 7, 2012

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Taking time to understand the process of dying may help you avoid going into full panic mode as your loved one moves through unfamiliar behavior patterns. But doing some research about the use of morphine during palliative care may save you from potential grief, guilt and long lasting personal trauma.

In the first meetings with our hospice representative we learned about palliative care including the use of narcotics to relieve pain. We learned that if the pain became greater than what the lower grade pain-releivers could manage we might have to escalate all the way up to morphine. Our representative wanted to make sure we understood and were okay with this.

My initial reaction was that I wanted K to be as conscious as possible during her final days and I wasn’t sure if morphine would allow her that privilege. On the other hand I most certainly didn’t want her to suffer with extreme pain. I wasn’t settled, but rather than impose my thoughts I waited for K’s reaction. She agreed that the morphine would be preferable, if ever needed. I went along knowing K didn’t make decisions like this lightly. It was obvious to me afterwards that she had already thought this through. (more…)

There’s No Spice Like Hospice April 29, 2012

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I can’t remember how many years I’ve said to friends, including K, that when it comes to dying I’m going to do it at home or in some desolate cabin in the forest. The thought behind those statements never went very deep and was always based on some romantic image I have of being alone, peacefully going within, uniting with God and never returning.  I know I’m not the only one with those sentiments since I’ve heard it from quite a number of other people as well, sans the uniting with God bit. But now having lived through an EOL experience at home I have a more complete picture, particularly for the longer term situations. I still feel the same way about dying at home, and maybe even more so, but realize that some preparation and realities are in order. (more…)

End of Life Care and Communication April 15, 2012

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During the time I was caregiving for K one thing that we hadn’t thought about seriously enough was communication. If someone is dying from a serious illness you may find all kinds of things happening to the quality and quantity of communication you’ll have with them*. For instance I had read, and was told, that at some point there could be hallucinations or harshness towards the caregivers, family and so on.  Having learned about this possibility I felt prepared and on alert, and sure enough I did experience some of that. Not that I knew how to handle it, but at least I wasn’t blindsided and panicky.

Although there are a variety of topics regarding communication during the end of life process, there were some helpful things I learned afterwards that I wish I had known earlier on. Comparing notes with someone else who went through a similar caregiving situation helped me gain some insight into the preparations we can make prior to entering later stages of the disease.

When K reached the point where verbal communication became too strenuous I really longed for a way to communicate and verify that she was comfortable and I was meeting her needs. But all too often I felt the communication was hit and miss, and as the disease progressed I only found it harder to decipher what she meant. (more…)

Caregiving: a Great Honor April 8, 2012

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When you are entrusted with the care of another human being, it is the greatest honor that can be bestowed on yourself.”  Chris MacLellan

This was a sentence I read in Chris’ blogsite The Purple Jacket, a site in part focused on caregiving. When I read that I had to smile because although I don’t know his personal experience, that sentence resonated so deeply with me. Caregiving was an experience that I found magical and took me by storm.

After K passed away, the one word that kept going through my mind was “kindness”.  Kindness for two reasons; one for the kindness I observed in the dying process. It was so gentle and caring I couldn’t help marvel at how perfectly it was designed. Secondly, for the kindness that was automatically and magically imbued into my own being, filling my actions and consciousness.

If someone would have described to me all the things I would end up doing as caregiver I would have been petrified  and doubted if there was any way I could do it; yet my experience was so opposite. It was as if something from deep within responded with incredible gentleness, kindness and decisiveness to K’s needs. It was not a thought process. Its strength overshadowed all kinds of inhibitions. As a matter of fact, the caring flowed so freely that I had almost no time to stop and consider how extraordinary it was. It wasn’t until afterwards that I realized what an amazing thing I had been privileged to participate in. (more…)