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Hardly What We Expected July 2, 2012

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There’s a picture of my parents I keep in my office that I really love; I think of it as a novel in a snapshot. I would guess that mom is around 19 and my father 21. Mom looks beautiful, radiant and very happy. Her quiet internal strength is visible to me even at that young age. She looks very mature compared to my father.

My father looks to me like a young Frank Sinatra. I can’t read what’s going through his mind but if I had to guess he is already working on how he is going to take good care of his future family. His sleeves are rolled up and he’s ready to conquer the world. He’s a fearless character and in the photo looks a bit like the cat that ate the canary. I can recognize his intense energy and entrepreneurial spirit. What’s not appearant is the devotion he has to my mother.

They are a handsome young couple. Life is in front of them and their faces reflect the optimism they feel for the future. My father with his street smarts, inquisitiveness and drive is capable of doing a lot. In this photo I see them enjoying the moment and very confindent about what’s to come. In reality neither of them had any idea what was ahead. (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…)

A Tale of Two Memorials May 28, 2012

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It’s completely coincidental that I’m inspired to write about memorials on Memorial Day. It just so happened that last weekend we had a second memorial for K in Minneapolis. Minneapolis is where K is originally from and it always held a special place in her heart. There are a lot of family and dear friends who still reside there, not to mention there’s also a spot for her in the family’s section of a local cemetery.

The memorial was a wonderful experience. It was thoughtfully and lovingly planned and attended by people who had strong affection for her. K was an amazing individual and I feel incredibly lucky to have known her so intimately. Those who met her were almost always deeply affected by her joy, sharp intelligence and caring nature. When she focused her attention on you it was both genuine and complete. She had a way of connecting that made you feel you mattered.

What I liked so much about the two memorials was that they were put together out of a combination of K’s wishes and our own inspiration. K provided us with enough information to take care of some basics, but she was clear that memorials are for the living. She wanted that whoever attended should have a good experience and that her family and I were able to express our love for her in our own way. (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…)

No Exemption From Grief April 22, 2012

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I doubt we can ever really be prepared for grief, but we can certainly be informed and aware that it may be coming. We can also be aware that it can impact our life in a big way. To assume we’d be exempt from grief would be a painful mistake, which is something I learned the hard way.

Because of my experiences and attitude towards life I never took grief seriously. In my mind, death is as natural a part of existence as birth. I can’t remember being born, but it seemed to work out okay and I have no idea where I was prior to that time. Death to me is just the other part of the cycle; inevitable, inescapable and probably just as kind as birth. Yes, there are a lot of religious viewpoints regarding death and the hereafter, but in reality we only know what we see and experience. With that in mind I have maintained an attitude that it is probably beneficial to keep a tempered attachment to friends, family and loved ones because ultimately, and assuredly, they will go – unless I go before them.

Also, I happen to enjoy existence; just sheer, unadorned, and unenhanced existence. I know K felt the same way. Even during her final couple of months we continued to begin the day happy to know we were still alive and could spend more time together. Her increasing frailness didn’t stop us from doing a little morning dance around the kitchen before breakfast as an expression of the joy we were feeling. It may sound a little silly but it made us laugh a lot. It was a genuine expression, sweet and a lot of fun, especially when we did the Snoopy dance. The dance celebrated our belief in the miracle of the present. This is a wonderful memory for me. (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…)

Our Checklist March 28, 2012

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Are you clear what to do when your family member or loved one passes away? An end-of-life checklist is indispensible.

I put the checklist that K and I created into the resources area. This is by no means the ultimate checklist, but one that worked well for our situation. It should give you a good starting point. One other thing K put together was a couple of binders with detailed information needed to complete items on the checklist. For instance, one binder had all our legal documents like the will, the two types of powers of attorney, etc. The other binder had basic information all her accounts, contact info for her immediate family, all the doctors contact info, hospice info, various articles or segments of books with “how to” information like transferring a car title, etc.

The checklist provided me a lot of comfort. You really won’t know what state you are going to be in when that final breath is taken and you also don’t know at what time it will happen or who will be around. In my case I was alone and it was around 4 AM.

During K’s last days I was administering medication to her every 4 hours around the clock.  I had a “med session” at 12 AM and set my alarm for 4 AM for the next round (I was sleeping in the room with her). Before lying down I noticed her breathing was different than anything I encountered before. I didn’t know what to think but fell asleep listening to her take heavy breaths. I was so exhausted I passed out.

When my alarm went off at 4 AM I laid there a in the semi-darkness to listen for the breath, but there was no sound. For the past week or so this was not uncommon; there would be no breath for 20-60 seconds and then a big inhale. But this time one minute went by and then two and still nothing. I got up and turned on the light. Still no sound of the breath. I sat next to her and waited carefully watching for movement. I held her hand; it was stiff and I was immediately overwhelmed. Even though I knew this was coming the reality was so hard to comprehend. I thought I might be wrong and that she is breathing so delicately that I’m missing it. So I called the hospice. (more…)

Providing Comfort is More Than a Physical Thing March 17, 2012

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Although having a conversation about dying is hardly an inspiration there are many important reasons to do so. One of the reasons I was hesitant was I feared bringing in negativity about survival. When K was diagnosed with cancer and began her subsequent treatment, death was not a subject I wanted to bring up. I wanted her to feel no matter what we were facing that she’ll get past it – and I believed she would. I don’t know if this is the “denial” I always hear about, but certainly when things became bad there was little within me that accepted she wouldn’t overcome it – until the final week. But even then I was partially expecting a miraculous turn around.

Thankfully K was more proactive and practical than me. As soon as we had the diagnosis that the cancer was no longer treatable through conventional methods she immediately went to work to prepare for her death. Part of this urgency had to do with knowing she would become increasingly tired and may lose her ability to think clearly for any sustained period of time. We worked together to put things in order which had the extra benefit that it turned out to be a wonderful way for us to collaborate and feel closer. The things we focused on were exclusively practical, i.e. completing a will, deciding on cremation, dying at home, where I would scatter her ashes, what to do with her assets, etc. She thought of every one of her family members and close friends in the process and made an effort to visit them all as sort of a “goodbye” tour.  When her energy became seriously depleted and no more travel was possible she was satisfied nothing was missed. (more…)