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I didn’t know what palliative care was until my brother-in-law’s cancer doctor suggested that Greg needed to be under it. What IS palliative care? It’s a specialized way of easing suffering for people with serious illness. It can provide help with depression, fatigue, breathing problems, some types of pain, etc. And the medical profession is beginning to see that it can help to prolong a person’s life.
For three years my b-i-l has been struggling with the aftermath of lung cancer and an experimental drug he was using. He’s in no pain, but be’s going through another round of chemo therapy that has left him essentially paralyzed and with massive short-term memory loss. I wasn’t sure what this palliative care would look like for him. They were told it was for depression. For the life of me I couldn’t understand how that would help Greg. He’s accepted the fact that he has a terminal illness.
But a few weeks ago Drollery and I met my sister and Greg at their house after his last round of chemo to help her get him upstairs. They have 16 stairs from the door to the living part of their home. Having not been on hand prior to this to see this process myself, I was totally stunned. It took Cindy and Drollery nearly 45 minutes to get Greg upstairs. He is, for all intents and purpose, just dead weight.
He can’t help. He tried. Sometimes he would manage to get a foot under himself and try to push up, but mostly he couldn’t. He collapsed on the next to the last step and it took another 15 minutes for them to get him from the top stair the six feet to his room and onto the bed. That was horrifying enough to watch. But what really made the deepest impression on me was the look on Greg’s face as they were pushing and pulling on him.
Quite simply, he was humiliated. Always a go-geter, a very vital man, I couldn’t begin to imagine what it all must have felt like to him.
Since then Greg has been enrolled in the Palliative Care program at the Huntsman Cancer Center in Salt Lake City, and I’m amazed at the difference it’s made in his attitude. For one thing he’s not nearly as short tempered with those who are trying to help him now. My sister was bearing the brunt of his frustration. So while nothing has changed physically for him, mentally and emotionally he’s in a much better place.
I’m bringing this up for a couple reasons. First, I just read a short article about it in the December/January issue of AARP magazine talking about how the health care system sometimes gets in the way of folks getting what they need in this area of medical care. Secondly, because it talks in the article about how palliative care is NOT limited to end-of-life issues. The truth is, as our life expectancy increases, we can all expect to experience the need for better care for serious, chronic conditions related to aging. Back pain comes to mind! Mental confusion, weakness, etc.
So if you have a chance to read up on this, please do so. We will never know when palliative care is something we might benefit from, and I have a feeling that knowing our options may end up being very important to a lot of us in the future.
For more information see Palliative Care: A Key to Living With Dignity
Impromptu Promptlings 
Of course, I come to catch up on your musings and you are discussing palliative care and hospice care. Of course I spent the better part of ten years working hospice and of course, I agree with your catch of “living with dignity” and the glimmers of ageism in society today.
Of course, I was supposed to cross your path in this random, anonymous way!
Hope you had a wonderful holiday.
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Well of course!!! Great to see you! Here’s my new wisdom for this year:
Everything changes,
Everything is connected,
Pay attention.
(Jane Hirshfield)
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I also only first heard the term, palliative care, when my mother was dying in ’06. The hospital moved her from intensive care to their palliative care floor. From there, Hospice was recommended. She agreed. They were exactly what she needed, and we, as a family needed. She only survived 15 days at home, before she crossed over. My father, likewise, got a recommendation from his oncologist to go into Hospice. After six months, they re-evaluated his case, and found that he did not need the service, and he was released. It was only at the end of his days, that Hospice came back into the picture. I think it is important that people realize that Hospice, specifically, doesn’t always mean it’s the end. They are there to help, in whatever way is needed. And it doesn’t always mean, it is the end. It is simply when there is nothing more the medical community can do, and thus, palliative care steps in to keep the person comfortable, and to have important other supportive care – from company, to uplifting visits from music therapists, to spiritual counseling and support, to basic home care – activities of daily living.
You’ve put out a very valuable post, here!
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After we talked yesterday I happened to read that article (or maybe it was before?) and just thought I’d post about it.
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I’ve been talking about this a lot recently with a friend of mine who is a emergency room and home care nurse, in the context of Canada’s physician-assisted dying rules that are to come into effect soon. We’re kind of on opposite sides (I’m all for physician-assisted dying, while she says emphatically that’s not what she signed up for as a nurse and that Manitoba has excellent palliative care), but the conversations have been really interesting and helped me learn a lot.
Glad to hear the palliative care program is helping Greg live with more dignity.
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I find it so interesting that for years “dying with dignity” has been the catch phrase that swirls around the physician assisted death debate. Why are we only now beginning to view it in the light of “living with dignity?” Could it be a purely monetary issue that makes it unpalatable to insurance companies? Especially medicare?
There are an awfully lot of non-terminally ill patients who live with NO dignity today because, for one thing, help isn’t available to keep them home. The medical industry is finding that being kept at home is more conducive to living a better quality of life, as well as experiencing a better death among loved ones and familiar surroundings. But it’s also more expensive for insurance companies.
Part of the problem, imo, is that we live in a culture defined by youth and dying is insulting to us. THAT needs to change. OML! I just realized I have a soapbox!!! 😮
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I love a good solid soapbox. 🙂
One thing that worries me about assisted death is that when insurance companies and their money get involved, things get scary. What if they decide to stop funding a person’s palliative care in the hopes that the patient will choose to die? (the less expensive option)
On the other hand, I know that when my time comes, I will appreciate having the choice (and I am fervently hoping that I will still be able to make that decision for myself).
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I so agree about the insurance company issue. They make a mess of everything and I TOTALLY can see them doing that. As to assisted death, I have no opinion on it. Truthfully, I don’t know what to think about it. I’ve seen folks who have been SO against the whole gay issue until one of their family comes out of the closet and they turn into total advocates. I know a lot of it depends on the situation and where you are in life. For that reason I can’t come down on one side or the other. Perhaps that’s a cop out, but for now that’s all I’ve got.
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I don’t want the naysayers to take away an option I might want to have later. I want the choice to be available, and if I don’t want to do it, I can choose not to avail myself of that option. So I guess I come down firmly on the side of enacting the legislation and all the safeguards, so that people can make their own safe and informed choices (regardless of what my choice might be)
You’re making me feel soapboxy. 🙂
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Well your point is very well taken. And it’s like that with so many OTHER kinds of legislation, isn’t it. They just get a foot in the door and the next thing you know you’ve lost your rights in some other area. I HATE politics! 😡
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Sounds like a good choice for him. It also means that he and his wife can spend 100% of their time enjoying each other instead of doing a lot of care-taking, which is exhausting for both of them.
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She has moved him downstairs to the basement floor. It’s unfinished except for two small bedrooms. They’re going to try to set it up like a bedroom and a sitting room. They slept down there for the first time last night. BUT they need to have a bathroom put in asap with a shower. So we’ll see what happens. The other option is to put him in a care facility and neither of them want that. He’s only 60. They had both just retired when this happened. Sucks.
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I agree that palliative care might be as necessary for people of any age group as for people who are very old because it might help recover easily. Your article gives a first hand example for an important case.
Thanks for sharing.
I wish you, your family and friends a lovely new year 🙂
Love and light ❤
Anand 🙂
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Actually Anand you bring up a very good point. Palliative care is for ANYONE who is struggling with a serious illness. I thought that as I was working through that blog in my head but never got around to saying it. Thank you for pointing it out. I’d like to hear what others have to say about that specific thing. And blessings on you and your family, too, my friend. May love and light ever radiate from within.
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🙂 🙂 🙂
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