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Caregiving: a Great Honor April 8, 2012

Posted by ijwoods in Blog+.
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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…)

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…)

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…)

Even Worse Than Death March 10, 2012

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When someone we love is diagnosed with a life-threatening condition, the worst thing we can imagine is that he or she might die. The sobering fact is that there are worse things than having someone you love die. Most basic, there is having the person you love die badly, suffering as he or she dies. Worse still is realizing later on that much of his or her suffering was unnecessary.” That’s an excerpt of a forthcoming book The Best Care Possible by Ira Byock, a long time palliative care physician, advocate for improved end-of-life care, and a past president of the American Academy of Hospice and Palliative Medicine.

After reading that excerpt I realized that part of the inspiration I had in creating this site came exactly from that line of thinking. Although the care giving I provided to K required a lot physically, it came naturally and lovingly.  It was a very intimate experience for the both of us.  On the other hand, the mental pressures definitely took a toll on me and one of the big ones was the concern that I would do something to cause K pain or harm. Both during and afterwards there was a intensive replaying of events in my mind looking for ways I could have improved her situation or handled things better. Many people have told me to not go there, but that’s easier said than done and the reality is that I could have used more information and help. It of course does me little good now. (more…)