I stepped from Plank to Plank
A slow and cautious way
The Stars about my Head I felt
About my feet the Sea.

I knew not but the next
Would be my final inch -
This gave me that precarious Gait
Some call Experience.

Emily Dickinson, c. 1864

Sunday, June 14, 2015

Line in the sand

Me, Norma Jean, PJ, Buz, Markee, and Fia
I've been thinking quite a lot about the passage of time, nothing new here. That picture was taken of me and my siblings thirty-two years ago now. We've all changed, of course, but we will never have the chance to take another one of all of us together, since PJ died more than a year ago. She was 63 and had ill health for many years prior to her death.

What has brought on all this introspection has been the process that Smart Guy and I have been going through for a month or so now. When I went through the death doula training process, I learned about something called an "advance directive" for the end of one's life. Although back in the early 2000s we had gone to a lawyer and written out our wills, including a health directive, since then we have moved from Colorado to Washington state, and more specifically to Whatcom County, the most northwest county in the nation, right next to the Canadian border.

It's different here than in Colorado. The Whatcom Alliance for Health Advancement (WAHA) has developed quite a good process to consolidate information so that if someone is suddenly taken ill or is in an accident and cannot speak for him- or herself, one's wishes can be on file and known to everyone. It all started with the two of us attending a sparsely attended seminar on the process and given some forms to peruse. A few days later, we received a followup call from one of their volunteers to offer us a private meeting with a facilitator who would help us decide how to fill out the forms. Those 7 pages are filled with difficult questions and require a good deal of thought. (You can see the forms on their website, if you're wondering what's involved.)

Last week we had an hour-and-a-half session with Karen, a volunteer facilitator, who helped us understand the need for thoughtful reflection before finally filling them out. The first thing that needed to be done is to declare another person or persons to be our Health Care Agents. We of course first chose each other, but I also listed my sister and a friend as my second and third agents, in case my first one would not be available.

Then we spent most of the time discussing our desires for life-prolonging treatments. I learned that almost half of us will not be able to make these decisions for ourselves, when the time comes. That is the reason for the extensive queries on the forms. These are all things that I've thought about, but I never considered that I might not be conscious or able to tell someone whether to stop treatment or not. And when that time might be.

Karen suggested that we think of what our own particular "line in the sand" would be. If I have a stroke and cannot communicate but am still mentally all there, what do I want to happen? If I'm in a car accident and am unconscious with severe head injuries, how long do I want them to keep me alive? It's all so confusing, so for the past week I've been going over these options in my head. Here's the kicker:
If I reach a point where my doctors feel it is reasonably certain that I will not recover my ability to interact meaningfully with myself, my family, friends, and environment, I want to stop or withhold all treatments that might be used to prolong my life.
That's pretty straightforward, and I can agree to that. But then I must define what "to interact meaningfully" means to me. That has been the hard part. I think I've finally decided that if I am not conscious, then let me go. But how long to wait for recovery? If I am in a coma, how long do I want them to wait before they stop? Some people have been in a coma for years and then recovered.

Well, I finally figured that part out, for me anyway. If I were younger, I might want to wait longer, but two weeks is enough time. It's not like I will be dying prematurely, whenever that occurs, because I'm already old. Maybe not OLD old quite yet, but that's not too far into the future. None of us knows when the time will come for each of us, but considering all these options has been eye-opening for me. I don't have to decide it for all time, but simply consider what I'd like to happen if it occurred right now, today.

In another week, we will meet once again at WAHA to have our forms witnessed by two people who are not related to us and have them notarized. WAHA then will make copies for us to distribute to everyone who needs them and puts a copy on file at the local hospital. I'll get a copy to give to my doctor when I see him next, and Karen suggested we let him know we'd like a little extra time to go over it.

I was so impressed with Karen and asked her what is entailed in becoming a facilitator. She told me that they have an extensive training program, and I asked her to sign me up. This is something I'd really like to do: help other people consider what their own "line in the sand" might be, and help other people to think about end-of-life choices. When I attended the death doula training, I  realized that much of what they do is for after a person dies, what to do with the body, arranging a vigil, that sort of thing. This might be more in line with my abilities. We'll see.

While I've been casting about, wondering what adventurous activity I might take up next, now that skydiving is fading into the past, it never occurred to me that it might not be a physical thing. After all, there is at least ONE big adventure in my future, and that's learning to leave behind mortality. Who knows what adventure might be awaiting me on the other side? One day I'll find out.

Until then, I'll continue to live my life every day, to the fullest that I can. My world is certainly wide open today. My friends, my partner, my family, my garden — all precious pieces of my life that I am able to appreciate and cherish just a little bit more because of filling out this form and thinking about what choices I will make for the end of my life.

Sorry that this post is not more uplifting, but introspection tends to make me a little less exuberant and flippant. I needed to write this all down so I could get my virtual arms around it. Done, and done. My post is finally finished, and even though it's not a fun post, I do hope you will consider these questions for yourselves. We'll all get there, one way or another.

18 comments:

Marty Damon said...

DJan - Don't worry that this post isn't uplifting. It's given me real food for thought. At several points as I read it, I thought, "Yes. That's how I would feel, too." You've set me wondering what services are here in my area. You've provided a real benefit to others with this, and it looks as though you'll be continuing that good work with your new training.

Far Side of Fifty said...

You are where we were a few months ago when we filled out our forms. It does require some thought. Two weeks seems like a long time to me...I think mine says three days...time enough to hang on and wait for a miracle to happen and time enough for your loved ones to adjust to your impending death. I felt much better after our papers were witnessed and on file at the local clinic, I also have a copy here at home.
I didn't find your post this morning depressing at all...it is something that everyone should think about. Have a good Sunday! :)

gigihawaii said...

Have you already considered making a Power of Attorney? In case you are comatose or have dementia or some other condition, your husband should have the power to withdraw money from your accounts to pay for your care. Vice-versa. There are other things to consider besides banking.

Elephant's Child said...

Any post which makes me think falls into the uplifting category. Thank you.
I think two weeks might be a bit long for me. Something I need to raise with my partner - with no hopes of success since he refuses to even make a will.

Rian said...

DH and I went to an attorney and made out a will with all that it entails (power of attorney and health directive)years ago. But the health directive certainly wasn't as specific as you're talking about with WAHA. And I do think that's a good idea. There are so many decisions that should be discussed before they are actually needed.

I was talking to someone (who is a nurse) not too long ago and we were discussing hospice vs palliative care. I hadn't realized how different these 2 things were... and how they were viewed by insurance.

Gigi said...

While never a "fun" topic; it is one that we all need to think about. Years ago, we went to an attorney to have our wills/health directive drawn up. I think this is something we need to re-visit soon; as circumstances and desires change over time. Have wonderful, fulfilling week.

Retired English Teacher said...

You have written about a very important topic. It is one we all need to consider. I know I need to spend more time working on such a document as you describe. I don't want my children, my husband, or whomever might be the one to make these decisions for me, to flounder and wonder what my wishes would be. This is a kind thing to do. Jim and I have done the preliminaries of making such decisions and have drawn them up with an attorney, but we need to look at this in more depth. Thanks for taking on the hard subjects.

Red said...

I'm sure everybody will find this a fascinating post. we've been wrestling with the same issue and of course we don't really agree. What complicates things is that these directives are complicated but when the time comes they are not very useful. If you're in an institution, the institution has it's say and with lawsuits they don't want to let anybody die on their watch. I listened to a documentary this morning where a woman had left precise instructions and is now in an almost vegetative state. She still opens her mouth when prompted by a spoon and is deemed to be aware.

Nancy/BLissed-Out Grandma said...

We need to do this, and I hadn't thought that there might be an organization that helps with it. Will look into that! I just read "Being Mortal," which I think I first heard about from you. It has given me much better understanding of how complicated things can be when one is at the end of life. I recognized the truth of it when I thought about my brother's recent death...health doesn't diminish on a predictable schedule, or even a predictable path. Thanks for a post that encourages me to take the next step...actually doing something about it!

Glenda C. Beall said...

Having faced end of life decisions when my husband had cancer and little chance of survival, I was so glad he and I had talked about these things. He told the doctors that I would make all decisions for him and, although it was the hardest thing I've ever done, I had to make the decision to end chemo treatments which I was told his heart would not be able to handle and he would only suffer more pain. He didn't like to talk about end of life plans, but I persisted and we had all the papers done. But in the end, I made the final decision to let him go. My older sister made her own decision to let her life end. Having lost family members who suffered in hospitals undergoing amputations, etc. that did them no good, I definitely want my family to do anything possible to help me leave this world when I cannot get well and am in pain. I think this is an important post, DJan, and one I'll share with others because we all need to take care of these matters while we are clear headed and reasonable.

Linda Myers said...

What a wonderful next step for you, DJan! This volunteerism sounds just right.

We had a similar conference last year with an attorney and our wishes are well and truly recorded.

Rita said...

Death will greet all of us. Does people no good not to discuss it and face those facts. Just makes it harder on our loved ones if the subject has been avoided...and often harder on the avoidee. I think this is something you'd be really good at. :)

Tabor said...

I am envious that you have found something so fulfilling that helps others. I have been searching for a volunteering effort that meets my needs as well as those of others, but the last place I signed for training has yet to call me back almost 6 months later!!

Friko said...

Ah, so you have finally done it, folded your last parachute and hung up your flying helmet. Well, there comes a time in the affairs of men . . . . . . .

This is an interesting post. We have what is called ‘Lasting Power of Attorney’ documents which are signed and deposited with solicitors. we give this power of say about us to a person or persons of our choice in respect of financial and other arrangements should we no longer be able to make decisions ourselves, for reasons of dementia, for instance.

Then we also have a ‘Living Will’ which stipulates about our end of life care and the decision to switch off a machine, say.

My doctor signed the latter document but she said that she probably would ignore my wishes and keep me alive as long as possible. Can’t win, as the document is not legally binding, just an expression of my wishes.

John's Island said...

Hi DJan, “Line in the Sand” is a somber and yet excellent post I would recommend to anyone who has reached the status of being a “senior.” Different folks have different interpretations of that and, of course, open to various interpretations. I’m there and definitely need to give some serious thought to the things you’ve mentioned. I appreciate the way you give us things to consider and a link to WAHA to view their forms. Some of those questions are extremely tough. Hard work now will be a godsend to folks taking care of us later. Actually, on second thought, even those who haven’t yet become a senior should have an “advance directive.” Thank you for this post.

Trish and Rob MacGregor said...

As we contemplate our own mortality...sobering, for sure. Necessary, definitely.

Penny said...

Hi, DJan - It's been a long time since I've looked at your blog....and here you are delving into end-of-life issues - right where I've been hanging out for quite a while. Presently, I'm in the middle of facilitating the second "being with Dying" 5-week series of conversations. Living wills and powers of attorney and pre-planned memorial services are part of the conversations, but most important is identifying what is still incomplete in their relationships with family, friends, and themselves. Creating a structure and curriculum that supports folks in lessening their fears and controllling those things that can be controlled has been of great satisfaction.....With your permission I would add this blog entry as one of their homework assignments.
Old age isn't all bad, eh?
Penny

Penny said...

Hi, DJan - It's been a long time since I've looked at your blog....and here you are delving into end-of-life issues - right where I've been hanging out for quite a while. Presently, I'm in the middle of facilitating the second "being with Dying" 5-week series of conversations. Living wills and powers of attorney and pre-planned memorial services are part of the conversations, but most important is identifying what is still incomplete in their relationships with family, friends, and themselves. Creating a structure and curriculum that supports folks in lessening their fears and controllling those things that can be controlled has been of great satisfaction.....With your permission I would add this blog entry as one of their homework assignments.
Old age isn't all bad, eh?
Penny