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Don’t Wait to Ask For Help July 20, 2012

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I’m a bit delinquent with this post. Last weekend I made the really bad decision to heat up a can of Indian food which had some white fuzz on top. I was so hungry I convinced myself that scraping off the fuzz would be fine. It wasn’t. Within a few hours I was slammed with a severe case of food poisoning and suffered through it till early the next morning. Now after several days I am almost fully recovered. The only help I managed to ask for during this ordeal was a cryptic email to a friend saying “check on me Tuesday and make sure I’m still alive”.  Of course the person I chose only checks email when the comet Kohoutek rounds the sun, so thankfully I’m still here. (more…)

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…)

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…)

Avoid the Dreaded Caregiver’s Burnout June 14, 2012

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“Family caregivers suffer from major depression much more frequently than the rest of the population. That’s a fact. When a family caregiver suffers from depression, there are two people at risk – the family caregiver and the family member or friend for whom she or he cares,”  From The Family Caregiver

Over the two years that K was ill, whenever I would speak to her brother-in-law he would invariably say to me,  “…and who takes care of the care givers?”  I could never understand what he was talking about at the time because not only did caregiving come naturally but it also hadn’t reached the point where it felt like it was affecting me.  Yet at one point it started it make a whole lot of sense.

You may have noticed that each day my Twitter tweets show up under “news and Twitter updates “ on this blog-site. The tweets come from sourcing and reading articles that I think you will find as interesting as I do about caregiving and end-of-life issues. What I’ve discovered is that a high percentage of articles coming out each day are about some form of “caregiver burnout”.  It’s a real problem; and growing.

Although I didn’t reach “burnout”, I can certainly see how it can occur.  In my case the caregiving was not that overwhelming early on. In those early days, after the cancer was discovered, K was able to bounce back from treatments. So, for example, although the first round of chemotherapy was very tough  she was functioning well again within a couple of months. Thankfully I work from home and had no problem providing transportation and hanging around the doctor’s office or making sure she was comfortable at home. After some time it seemed she had almost returned to normal except for a non-alarming loss of strength weight. So the caregiving at that time, although mentally strenuous, was not crushing. (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…)

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…)