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.
(If you would like to receive automatic updates, please click on the following link:
Dis Ease Diary 
I’ve been following this blog from (nearly) the beginning. I’ve never commented. I’m afraid I’m not much of a writer. However. I have never read such an inspiring story or been so moved as I have been by Bruce and the rest of you…his family. I’ve nothing profound to say, nothing grand or poetic. Just a thank you for sharing your journey. I’ve cried, laughed, rejoiced and grieved with you. You are all truly amazing people.
Thanks, Ev, I love your honest loving comments. You help us see the reality and the blessing of this journey. I am always amazed at your strength and love. Forever grateful. Karen
So calling or Skyping you some Sunday afternoon would not be out of order 🙂
Thanks for the update! Quick note: the caringbridge link doesn’t work. I think if you add an http:// to the beginning it’d work.
As a PALS I appreciate getting the updates. They are uplifting. I have a slow form and am in my sixth year since diagnosis. I flunked out of hospice last August when I needed IV’s in the emergency room to combat a versa infection. Contrary to most experience I ended Hospice to soon and got caught in Medicare rule changes. We had to painfully justify medications that offered comfort or use meds that hadn’t worked in the past for me. Stressful.
We entered, not ended, hospice too soon. Will reenter as needed. Hospice staff were helpful and helped share the burdens. We had to painfully re-justify all the meds. Most of which had been replaced when they were found ineffective. Symptoms returned which I didn’t need to cope with. After two months it got sorted out. Every day is a gift and my best day. Our regards!
Ev, thanks so much for the update on Bruce.
Bruce, I greatly miss our Tuesday lunches with those hyper-spiced burgers from the Mainstreet Grill. Those potato chips were 5-star too.
My fondest memory of our apres lunch was sitting quietly with Bruce and listening to his Super Sound System play his selections du jour. When you can feel the vibes, you know you’re in the front row.
But, best of all were our talks, where we parsed over and over again all those things that matter to us and are still in need of resolution.
What mattered most, though, was being there with my good friend and longtime colleague, enjoying the moments of grace we’d been given that day. There were many such days.
Bruce, I look forward to more visits when we return from our winter break. Love to you both!
Ev, thank you for your loving clarification…loving of Bruce but also of us who follow and care.
It is reassuring that you have such a good team supporting both of you.
Marilee
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Dear Bruce & Ev – you and your family are such an inspiration to everyone who knows you and to those who read your blog and don’t know you. Everyone is richly blessed to read what is going on in your lives and grateful to hear of your great faith in a loving God. It is truly inspirational. When you told us that Teri was near to you, it made us feel that she is nearer to us too.
It’s been a blessing that our families were brought together through Kirsten & Jon.
We love you all so much. Alice & Don
Ev and Bruce. Andy and I send our love and prayers.. We are away and wish we could visit. We are glad that Hospice is working for you. I always hear wonderful things about their care.
Joy Montgomery
Mrs Kramer, It takes an amazingly dedicated, loving and strong partner to walk through “dis ease,” and in particular, that of ALS. I pray regularly for Dr Bruce, you, your kids, grandkid (is there more than one?), relatives, friends and other caregivers. May you be given strength, patience and good health as you live out each day. Barbara DeMaster, past student and advisee.