Happy New Year! My update is long overdue. Judging by the reaction of some, to Bruce’s last blog entry, I feel I need to clarify how we are doing right now.
One of Bruce’s all-time favorite movies is MONTY PYTHON AND THE HOLY GRAIL. There is the memorable scene in the plague-ridden town where they cry, “Bring out your dead! Bring out your dead! ” One old man carried out on a stretcher says, “But I’m not dead yet!” That’s Bruce.
It is hard to hear the dreaded ‘H’ word – the H, of course, being Hospice. In the United States, we don’t do hospice well. We wait far too long to take advantage of the hospice benefit. Sometimes, the person who is dying is not even aware they are in hospice, because hospice wasn’t called in until the patient was in a coma. We hear “Hospice” and we all jump to the conclusion that death is imminent – a matter of a few days.
Bruce is still here and still very much alive.
Hospice is a philosophy. The main idea is that when a person is within 6 months or so of death, they ought to be made as comfortable as possible so that they can wrap up their life, say the things they want to say,do the things they most enjoy doing, and be able to say their goodbyes to the people they love in a planful way.
We began hospice in mid-September and often wonder why we didn’t start sooner. Our lives have greatly improved since beginning hospice.
There are the little things, like not having to remember to refill prescriptions and figure out the logistics in order to pick them up. Hospice delivers all our meds and supplies to our door and pays for them as well.
No longer do I need to worry about how on earth I am going to get Bruce to a clinic to check a possible ear infection, or a skin rash or a sinus infection. Hospice sends out a nurse practitioner to check on him in our living room.
Weekly visits with our lovely hospice nurse allow us to ask worrisome questions, draw on a wide variety of medical expertise and specialties, and then decide on a course of action as a team.
Instead of carrying the whole heavy burden of Bruce’s ALS by myself, I suddenly have an entire caring team to help ease my load. We have wonderful aides who come and shower Bruce, 2 fabulous masseuses who soothe his pain with healing massage, grief counselors and a social worker who check on my emotional and physical health, as well as the well-being of our sons and daughters-in-love. We feel so supported!
And yet………. Death is here, in the corner of the room. Death is patient; it isn’t Bruce’s time – yet. Once in a while, Death nods his head, gives us a wink – as if to let us know, “Hey, I’m in no hurry. Take your time. I don’t mind waiting. I’ve got a whole briefcase full of cases I can go through while I’m waiting for you, Bruce.”
We welcome your loving messages. Better to say the things you need to say now, when Bruce can answer you back. I am creating a scrapbook of your loving notes to share with my kids, their wives and my grand-kids (born and those not yet a twinkle in someone’s eye). If you haven’t written a “Dear Hypatia” note yet with your memories and impressions of Grandpa Bruce, please do so now.
Bruce is still very much involved in life. His book, WE KNOW HOW THIS ENDS: Living while Dying is available for pre-order from the University of Minnesota Press as well as on Amazon.com. Bruce is involved in plans for launching the book and for creating an ‘enhanced E-book” version as well.
He tires more easily these days and is entirely dependent upon his Trilogy machine to help him breathe. As his muscles waste, his joint pain increases so he is taking more medication for pain these days. But Bruce enjoys visits with friends and colleagues. Please call and arrange a visit. Just watch for signs that he is tiring.
Thank you for all your prayers, positive thoughts and caring messages as we walk together towards the Next Big Adventure.
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