Hardly What We Expected July 2, 2012
Posted by ijwoods in Blog+.Tags: caregiver, caregiving, preparations
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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
Posted by ijwoods in Blog+.Tags: caregiver, caregiving, preparations, providing comfort
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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
Posted by ijwoods in Blog+.Tags: burnout, caregiver, caregiving, dying at home
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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
Posted by ijwoods in Blog+.Tags: caregiver, caregiving, communication, Elisabeth Kubler-Ross, grief, preparations, providing comfort
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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
Posted by ijwoods in Blog+.Tags: caregiver, caregiving, communication, dying at home, dying behavior, Final Gifts, maggie callanan, providing comfort
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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…)
There’s No Spice Like Hospice April 29, 2012
Posted by ijwoods in Blog+.Tags: caregiver, caregiving, dying at home, hospice, hospice and palliative care, palliative care, providing comfort
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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
Posted by ijwoods in Blog+.Tags: caregiver, caregiving, grief, grieving, hospice, preparations
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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
Posted by ijwoods in Blog+.Tags: caregiver, caregiving, communication, dying at home, preparations, providing comfort
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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…)
Providing Comfort is More Than a Physical Thing March 17, 2012
Posted by ijwoods in Blog+.Tags: caregiver, caregiving, dying at home, preparations, providing comfort
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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
Posted by ijwoods in Blog+.Tags: caregiver, caregiving, dying at home, Ira Baycock
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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…)
Conscious Departures 