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…)
Morphine May 7, 2012
Posted by ijwoods in Blog+.Tags: caregiving, dying at home, hospice, hospice and palliative care, morphine, palliative care, providing comfort
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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
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…)
Caregiving: a Great Honor April 8, 2012
Posted by ijwoods in Blog+.Tags: caregiving, dying at home, hospice, hospice and palliative care, preparations, providing comfort
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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
Posted by ijwoods in Blog+.Tags: caregiving, dying at home, dying behavior, meditation, providing comfort
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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…)
Our Checklist March 28, 2012
Posted by ijwoods in Blog+.Tags: checklist, dying checklist, preparations
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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
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…)
Conscious Departures 