Be Here Then

why and how to write & create an ethical will, hospice card, or other legacy

I Guessed Incorrectly. Will You?

Taking a break today from end-of-life care issues, I read this blog post by Eric Barker and my guess, despite all my work on ethical wills, was mostly incorrect for what one piece of advice older folks would want to give to younger ones.

What do you think you would advise?


Grief and the first day without…

Grief is universal, but it feels intensely lonely and personal, and if you are not an animal lover, read no further.  This is not about ethical wills or hospice cards, although that might come later.

While we all have read the incredible stories of dogs and what they are capable of, this is not to tell you mine — it is to help me get through my first day without him, a day I have never wanted to see, a day that I cognitively understand is normal but to which my gut screams No!

Jackson on bench MDYesterday, I had to put to sleep my first dog, my dearest companion, a golden retriever/collie mix named Jackson who just appeared on our doorstep one June 12 years ago.  He was about 1-1.5 years old, had been abused and abandoned, and had been seen running around for several days in our neighborhood in a rural part of Maryland.  Skinny, matted, he would not go to anyone.  He wound up on our doorstep early one morning, whining, and when the door was opened, up he looked with a sweet, tentative look, and a thumping tail, with “please?  I need somebody…” radiating from his entire body.

He’s a rescue dog, and I’m the one he rescued.  I mis-read his body language: what he was really saying was, “please? you know you need me…”  He was, of course, absolutely right.  It just took me a few years to realize it.

This post is to give an answer to the first of my two questions below.

First question:  How do you get up, this first morning without your best friend, and face this day?

First answer:  We were given bladders for just this reason.

Jackson kiss at GA lake cropSecond question, parts A & B:  And DO you still go for that morning walk, and if so, HOW do you go for a walk — without him?

Second answer — Part A: yes, of course, why do you think you were given a dog in the first place and not a cat?  Partly, to get you outside.  Part B: see the previous post.

So I hope you read that post, and I hope it gets to someone else who needs to know it, too.

I know now how…

I know now how to take a walk the first morning you have to wake up without your dog.

Carry his collar and talk to him even though it makes you look like either you have a bluetooth earpiece no one can see, or you are off your meds — but who cares, really? — and you stop at his favorite places to sniff and pee, and you cry, and you grip the collar really really tightly, and you keep walking,

and you thank him for being able to keep up with you again, and that you remember when he used to walk so fast you could barely keep up with him and he wasn’t even trotting yet, and you cry again,

and you pass someone with a dog who reminds you of yours, and they’re wearing a chemo-kerchief, and you ask them if you can pet their dog, and yes you’re crying, but they say “of course!” and the dog licks every tear as it sprouts, and you laugh, and you know it isn’t your dog, but god, what a pleasure a dog is, and you ask how they are doing, and they tell you, and you both give each other a long, hard hug, and you are still gripping the collar really tightly

and you keep walking

and you walk as hard and fast as you can,

and you talk to him — you keep thanking him, and asking forgiveness, and begging for a sign that there really is a “next” and that he is still somehow “there” and you wonder how much you are “making a sign” out of nothing and how much it really might be one, like the random screen saver that looked like your sweet boy at the hospital when you wrote that email after he died because you couldn’t stand to leave the place because it made you feel like you were leaving him…then you remembered you were keeping your promise, and you weren’t leaving him, that it was his turn to leave you…

and you cling to the hope that it’s really just a physics problem, that we can’t see from this place to the “next,” if “next” is even the right concept, and that really he IS walking jauntily and happily right next to me, delighted to feel better, and slightly sad that you are so sad, but full of some wisdom that it really will be okay, it really will…

and you keep walking.

And that is how you start to learn to take a walk without your dog –at the other end of the leash.  And that is how you think of it.

Jackson..jackson for hospice card

Writer discovers how much his notes mattered

Jim Sollisch wrote an article in the NY Times that I think demonstrates the impact writing simple things can have on others.  I don’t want to spoil the delight of the article for you, so take the 1.5 minutes and click the link and read it yourself.

“Thank you” is a powerful phrase if written sincerely.  Its absence is, I think, equally powerful.  In fact, those of you who have read back to the beginnings of this series know the black hole that “nothing” becomes, complete with intractable gravity.

So while you still don’t have to be writing your ethical will, you do — you know you do — owe it to those you love to let them know you appreciate them, or you are thinking of them, or why they matter to you.

DSCN3620As I face the waning days of my beloved best buddy and the prospects of having to euthanize him, I know the raw, ragged  hole he will leave behind can’t be filled with the words of friends.  But I also know their words — few needed, what can you say? — offered in a note, will help heal that hole.  Eventually.

And thank you for reading.

In hospice, what words you use matter

Read this hospice’s two ways of conveying a concept and see if you, too, can feel the difference.  Do you think they are saying the same thing?  Or do you think that, in fact, they are saying two very different things, conveying two very different perspectives?  I love hospice, and these folks seem to “get it” about language.

The above  is a good example why on this site I emphasize the importance of carefully choosing our words.

An oncologist, a patient, a hospice, and a goodbye

This post is not about ethical wills but it is very much about saying what needs to be said.  I just now came across this blog post written by oncologist Don S. Dizon, MD, about saying goodbye to patients, especially those going into hospice care.  I think this doc has guts and a strong heart.

It has been quite a while since I have read something so concise, yet so moving.  I offer it in the hopes that it will move some of you to think about what needs saying by you, but have not yet quite managed it.

My own experience of illness, loss, and the kindnesses of others has prompted me to say now the things I previously stored away in my heart – sharing gratitude in the moment is important.  We never know when an opportunity is the last one we will be given.

And regret, especially for kindnesses not offered, gratitude not expressed, is a corrosive burden.  Lighten up.  And thanks to Dr. Dizon for his example.

Not about hospice, but a must-read about your medical care

Before you finish your ethical will, before you might need hospice care, before you read another book or see another doctor, read this: When Doctors Don’t Listen, written by two medical doctors currently working in Boston, Massachusetts, is something I wish I had had fifteen years ago and was in an HMO.

What I love most about this book are three things in particular:

One, their tone is respectful of doctors, even the ones who don’t listen, but also firm in urging patients to speak up to those same doctors in the moment, right when patients feel they aren’t being heard.  The authors’ suggestions for how to speak up are, in my opinion, beautifully and carefully considered.

Two, the authors provide useful appendices: one in particular gives you a few opportunities to “practice” speaking up before you need to go in for a medical appointment (and I think many of us could use that practice); another gives you a framework for how to organize your information before you go to the appointment to help maximize your opportunity to be clearly understood.  (I could have used this when I was trying to find out why I wasn’t sleeping.)

And three, the examples and stories the authors use to illustrate their points are spot-on, and personally I found them usefully alarming.  I won’t ever again dumbly nod when I’m told to go get a CT scan, especially after having had three chest CTs already and now — now! — finding out about the risks involved.

In fact, this book is so good, that I wish I could afford to buy a copy for every doctor I’ve seen over the last fifteen years who did not listen, and who contributed to the consequences of undiagnosed sleep disorders, and give it to them along with a letter written explaining why they are receiving it.

Yes, it’s that good.

Whether you are a ‘doctor knows best’ person or a skeptic Googler of medical research, you will find this book any or all of the following: useful, hopeful, supportive, challenging in a respectful way, and ultimately worth every penny.

Here’s a lovely card for someone in hospice care, and about “hope”

Here is a card appropriate for someone in hospice care, IF you pay attention to the word “hope,” that might appeal to those who love floral images.  You, too, might enjoy Brent Davis’s other work.

The text on the front of the card mentions “hope” and “love” and when you are sending a card to someone in hospice care, it is good to remember that hospice care ideally is for those who are no longer trying every last possible way to stay alive — rather, they are trying to LIVE as well as possible the time left to them.

So “hope” could be misconstrued here as wishing them hope for cure, or remission, or something other than what hospice care is.  I might send this card to someone I knew who loved flowers, and inside — depending on the relationship, of course — I would write something about that hope.

Some possibilities:

With all our love, and with the hope of reconnecting on the other side.

With love for you, and love and hope for your family, whom we will support with all our hearts.

I hope you know how much you mean to me, and I love you now and always will.

You and I have shared our hopes and love for many years, and that has been a beautiful part of my life.  You are cherished, and always will be.

You have been the very definition of friendship.  Just as I hope those you love who have gone before you will be waiting to greet you, I hope you will be there to greet me when it is my turn to follow.  See you down the road, my friend.  With all my love . . .

You get the idea.  Check out the photograph, and maybe you will find something on that site you like even more, for a hospice card.

Writing about illness, end-of-life issues

While having to spend a bit more time on family care and away from here, I came across this post from NPR Health News, “Why More Patients Should Blog About Illness and Death.”  Title just makes you want to run and read it, yes?  No, most of us probably would rather run the other way.  Just for a second — don’t.

I think it’s a good read, and a great prompt.   Think about some conversations you may need to have with your own family.   And think about what you want to leave as your legacy.  If you write a blog along these lines, then you already have the material for an ethical will.  If you read some of these blogs, then you will undoubtedly get some wonderful ideas and, I hope, the comfort of knowing others are having these difficulties, and these conversations, and doing all right.

Good reading to you!

Hospice cards – a link to someone else’s site to buy them

I do not know this person but the artwork on the cards and the sentiments already printed inside them might appeal to some of you, so in case you have not already found this resource:

In the meantime, I am still working on a few more free ideas to post here for you.

Another resource for people who are wanting to organize their lives and tie up loose ends is the book In the Checklist of Life and I do very much recommend it.  You can read my description of  it here but the actual book you can find here:

Anyone familiar with the old James Taylor song “Shower the People”?  Tell them the way you feel…

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