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Leave No Room for Doubt October 6, 2012

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From the The New York Times, Oct. 6, 2012: “An appeals court panel on Friday ruled that a hospital could remove life support from a terminally ill Queens woman, but now there appears to be some doubt about what the patient, a 28-year-old bank manager with brain cancer, really wants.”

I created the section “Some things you need to be considering” to help non-paid caregivers, entering a caregiving situation, be aware of several key issues they may face caring for someone with a terminal (or potentially terminal) illness.

Taking care of someone in their final days is a great responsibility and an amazing gift as well if you can approach it right. Taking time to consider the various aspects of such caregiving is critical for both the person being cared for and the caregiver. The list of considerations I created comes strictly from what I experienced and so may not be complete for your situation, but there’s enough there to give you a heads up and a good, if not nearly complete overview of what to prepare for. Because of the list’s importance I decided to give each item a separate post to elaborate on the issue and also provide some resources as a springboard for further research.

The first item seems like a simple one: where do you want the caregiving to take place and where would the person like to die? It sounds simple, but it’s not always an easy decision and one that can be influenced by many variables. Not only that, it becomes part of a bigger discussion; one about the law. Before your eyes glaze over and the temptation to click away overtakes you, bear with me because although you may luck out and find you can go through an end of life caregiving situation without hassle, don’t count on it unless you prepare ahead of time. Oh, and that “time” can be any time. It’s not exactly something we control. (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…)

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…)

Hospice vs Palliative Care March 11, 2012

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I realized after finishing the last post that I wasn’t clear about the differences between hospice care and palliative care. In looking for definitions I ended up at that wonderful site called the Caregivers Library, noted in the resource list. They have a very good section on this very subject called Hospice vs. Palliative Care. The section is not a showdown between the two but a thorough explanation as to what each one does, when, where and how. Here’s their general definition:

“The differences between hospice and palliative care.  

Hospice care and palliative care are very similar when it comes to the most important issue for dying people: care. Most people have heard of hospice care and have a general idea of what services hospice provides. What they don’t know or what may become confusing is that hospice provides “palliative care,” and that palliative care is both a method of administering “comfort” care and increasingly, an administered system of palliative care offered most prevalently by hospitals. As an adjunct or supplement to some of the more “traditional” care options, both hospice and palliative care protocols call for patients to receive a combined approach where medications, day-to-day care, equipment, bereavement counseling, and symptom treatment are administered through a single program. Where palliative care programs and hospice care programs differ greatly is in the care location, timing, payment, and eligibility for services.”

I recommend reading the entire section for further detail: Hospice vs. Palliative Care