February, 2021
I am entering hospice care and you need to calm down. I’m not dead yet and don’t plan to be for some time thank you very much. So there.
Most people associate hospice with end of life care for those in the last stages of cancer. Hospice for us pALS, however, is a bit different than for cancer patients. With cancer, there are therapies that can stop or eliminate the cancer. With ALS, the most we can do is delay disease progression, and then not by much. In cancer, hospice is triggered by a realization that therapies will not provide a cure and so care has to shift gears and focus on comfort rather than cure. With ALS, you’re in that position from day one.
The focus on quality of life means that hospice begins way before end of life procedures are required. Care typically begins when dependence on breathing assistance passes a certain point, and is renewable every six months. My neurologist once had a patient who was in hospice care for seven years!
We have chosen a provider, recommended by my neurologist, that is experienced with pALS. The provider, Vitas, will work closely with my existing team who will continue to provide neurological, pulmonary, and palliative care. I will continue to take the same therapies that I am taking now.
So, nothing to see here folks, just move along.
We had an extensive discussion with my neurologist about hospice for pALS like me. During the course of our talk she asked me my goals in entering hospice. I said “Good drugs.”
I know, I know, you have questions, from specific new procedures (none I could discern) to whether I would have to leave my home (nope). Still, knowing you, your top question is this:
What drugs do you get?
Great minds do think alike.
At some point they’ll be feeding me morphine, I think, to alleviate breathing difficulty symptoms. That, however, is way down the line. Good thing, too, because I’m no fan of narcotics and that stuff is murder on Door Number Two.
In subsequent blogs I hope to share with you the joy of being on the receiving end of this care. In the meantime your comments and questions are welcome and encouraged. Let’s 86 the pity party, however. That is so last Thursday.
By the way, I just had my first meeting with the hospice case manager and it was boring. I am happy to report that their care is really just a supplement to my existing care. There’s even some bonuses. 24/7 doctors and insurance funded exam gloves. Such a deal!
Embrace The Suck 
Thank you Bob for the update. Sending good thoughts. Wishing you success, comfort and looking forward to more blogging. Fondly, Deb
LikeLiked by 1 person
Thinking of you-watching the PBS series on jazz.
LikeLiked by 1 person
Waldo, Best of luck with the hospice care. Like you said, it could make things better. But I like your question. what kind of drugs do I get? Do you get to listen to some music? Good idea unless it’s a bass clarinet. LOL
LikeLiked by 1 person
Your description of hospice care was no surprise to me, having tried to explain to my older sister why she should have opened her mind to it. She didn’t, and that made her inevitable death (from cancer) all the more difficult. I admire your courage, open-mindedness and good humor, and will endeavor to take a page out of your book should I find myself in such a situation (though I’m lacking in the humor department to begin with!). Likewise, the way that Dick’s folks approached the inevitable stood in stark contrast to my family and serves as my model Love, Nancy
LikeLiked by 1 person
Bob, a couple of weeks ago I shared your blog the board members of my adaptive sports program. I heard appreciative and encouraging replies from the current president, who has an adult son with serious health issues, as well as our outgoing president, Vince Marchi, a dear friend of ours. Vince said he is now following your blog; so if you see his name, you know the connection.
LikeLiked by 1 person
You always make me laugh, Bob, and teach me something I did not know before, so thank you for Embracing the Suck and sharing it with us. I’m just looking forward to my second vaccine!
LikeLiked by 1 person
Bob
Continuing to be a complete technology idiot I am hoping this try at a message won’t head out into the cloud forever to be lost as was my feeble attempt a half hour ago! Thanks for the well written and enlightening sharing….and maybe most importantly your rich tidbits of humor! I look forward to ongoing updates and continued humor in your future reports. Best to St Laurel.
LikeLiked by 1 person
Hi Bob, Thank you for letting us know. It must be a load off your mind having had that discussion, and getting the extra layer of care. Do share your impressions of Vitas when you can, I’m really appreciating your insightful commentary. The creativity that you and so many of my friends have shared with me this year has been a real gift.
LikeLiked by 1 person
Hi, Bob. Thanks for the update and explanation of how you are getting another layer of support! Any updates on driving your barko-lounger on wheels? Is the house surviving? Best, Stan
LikeLiked by 1 person
Dear Bob, you are amazing, and so is St. Laurel. Thank you for again helping us to understand what’s happening with you and to know more about living with ALS.
LikeLiked by 1 person
Greetings from your least tech savvy former colleague. This is my third try attempting to post☹️. Let’s see what happens! Thanks for the update and your smile inciting writing style and attitude. Best to St. Laurel
LikeLiked by 1 person
Hi Bob,
I recently read Being Mortal by Dr. Atul Gawande. It confirms your observations about hospice care. It’s all about quality of life. I’m glad you aren’t waiting.
Have you had a chance to watch the current season of The Expanse? It’s outstanding.
Nelson
LikeLiked by 1 person
Fantastic blog, Dad! We love you so much ❤
LikeLiked by 1 person
Bob, it’s good to read your posts because we miss you a lot. Not that I’d be running into you at Cafe Stritch or the Jazz Festival, because those things don’t exist at the moment, so the one benefit of the pandemic is that you’re missing less than you would otherwise. Since I last saw you a third daughter has joined the brood and is crawling like a champ now. The companies you ably represented bought weeklies in the East Bay and Scotts Valley last year.
Best wishes with your new treatments, and please blog again when you can.
LikeLiked by 1 person