What if I don’t know who could be my advocate?

The Death Positive Movement is zooming! I am being asked to speak in all kinds of venues: Senior Groups, Libraries, Cemetery Boards, congregations. The recent Advance Care Planning  presentation was jam-packed and vibrant. Everyone wanted to know about End-of-Life Doulas. Curiosity leads to wonder and respect and recognition of the importance of this role in helping individuals who are facing death and the families who are caring for them. Learn more here.

We had 29 people at Death Cafe last week! Our biggest ever, with 14 new people. The conversation really opened my heart in new ways as people shared candidly and honestly. We all remarked about how “real” it was. One of the biggest challenges I have faced recently is how to advise folks who don’t know who to choose to be their healthcare advocate. An advocate is someone who will speak for you if you become incapacitated. They need to know what you would want, what gives you quality of life, what you would be willing to sacrifice and what you would not. This requires conversation, not just once but multiple times, and each time your healthcare situation changes. There are a large number of people over 65 who do not have a life partner nor children and for whom it seems there is no obvious choice of advocate.

These are precisely the people for whom it is most important to have an advocate! It’s a difficult situation. Is there a co-worker, neighbor or friend who you could talk to? It doesn’t have to be permanent; you can revoke your advocate and choose another if your situation changes and someone else can step into the role. The most important thing is to choose someone and to discuss with them the following:

  • Are they willing to speak up for you, even if they don’t agree with your choices?
  • Will they be available?
  • Can you talk to them about
  • What quality of life means to you?
  • What you are willing to sacrifice and what you are not?

There are professionals out there who will be your advocate for a fee. But first consider if there is someone you know who is willing to take on this responsibility. Write it all down. Write them a letter in a narrative format so that they can hear your voice if they are ever in the position to have to speak for you. An Advance Directive form, with it’s standard check boxes that are not personalized, isn’t enough when life and death situations arise. Include in your letter what a good day would look like and give them permission to forego further treatment if that good day is unlikely to ever be able to be achieved again. The consequences are too high to NOT do this. Tell them you know they will do the best they can and then say you forgive them. Thank them. This is a big job. But if you can’t speak for yourself, do you really want a doctor who doesn’t know you to make these decisions? Or worse yet, an ethics committee? Better someone who knows you and has talked these things over with you.

And then hopefully it won’t be needed. But hope is not a good plan.

 

I decided to make a casket

— I have a home funeral training coming up and thought it would be nice to have a “plain pine box” to practice “casketing.” I’ve been meaning to have a casket on hand for a while now. This seemed like a good excuse to get going. So, I called my carpenter friend, Greg. He’s been offering to make one for me for years now, so he can get the practice. He was eager to help me out and is making it at cost. Good for everybody! It’s a win-win!

Here’s the challenges so far:

  1. How do we make this as “green” as possible?
  2. What size should it be (for what size person)? This requires thinking that an actual person, perhaps someone I know and love, might eventually use it. Wow – that’s a step further than I wanted to go.
  3. Where am I going to store this thing, and for that matter, will I be able to fit it in my car (a Prius)?

— Greg sent me some possible designs via email. I looked them over. I decided I wanted my mother’s opinion. Why? Well, I wondered what might appeal to her, and if it’s used for someone in our family, I want her to like it. It entered both our minds that she might be the one to use it. After all, she has said that she wants a green burial, in an environmentally friendly, simple but elegant wood casket, and she’s 84. You never know. I’m open to selling this casket to the next person who contacts me and needs one and doesn’t have time to obtain one any other way. But, barring that, it’s a good bet, given her age and desire for just such a casket, that she might be the one to use it. We decided not to go there. We decided that I just want another set of eyes on it to help me choose.

— I went over to Greg’s shop. I picked out the features I wanted, like

  • Lid attached or removable? (removable – more practical, no hinges)
  • A lid that can be opened half-way? (No! We’re not hiding anything)
  • Metal brackets, rope, or wood dowel handles on the sides? (Wood dowel so multiple people can help carry it, less metal)
  • Pine planks or plywood? (Pine planks – read on)

— At first I liked the idea of using plywood, especially since Greg had some around and it would be less expensive. But upon further investigation, I found out that, even though it is a very efficient use of the wood of the tree (the trunk is placed on a spindle and the wood is shaved off in layers right down to the core, so you don’t have the waste of making straight planks out of something that is round), the layers are fixed together using glue. And glue is toxic. So, no plywood. Besides, it’s thinner and less sturdy and the ends can’t be finished like I want. But planks will require more nails and screws. Oh, dear.

— I considered using “found” wood (wood laying around in someone’s shop, barn, garage, or yard), or “urban wood,” (from local, dead urban trees that would otherwise go into a chipper); this idea appealed to me. But my mom and I agreed that for this one-style-fits-all casket for an unknown person, we didn’t want it to look too rustic. And now we get into the root of the problem: there is no one-size-fits-all environmentally friendly casket. There’s many choices to make. And the style of the casket used for a loved one, the look and feel and decoration, not to mention size and strength, is really important! It adds to the meaning-making of the ceremony, the mourning, the honoring, and the burying of the dead. It’s really important to be able to have choice around what burial container to use. It’s helps us in our grief to think seriously about this and be able to choose a container that says something about the person that is in it.

— Here I’d been thinking that having a casket around would be a good thing, because I know that people often don’t plan ahead. And carpenters aren’t usually on-call! It would be good to have this nice casket, suitable for a green burial, stored at my house for the next person who needed one in a pinch, right? But I’m making this casket for an unknown person; I don’t know who they will be and what they would want. By necessity, I have to make one that appeals to as many people as possible. Unless my mom decides that it is for her. But she has said she doesn’t want to think of it that way. And she won’t store it at her house because she doesn’t want to look at it.

— That brings us to storage.Will my partner be willing to have it stored at our house somewhere? Does one  put it in the corner of the basement where one seldom goes so one won’t have to see it?  And would that give one the creeps if one did on occasion see it, by surprise? Maybe even knowing it was there would be creepy? But I digress. I still have some design decisions to make.

— The size: Do I make it large enough for anyone in my family (son, 6’4″, partner 6’2″ – I don’t want to go there!!! Not to mention me!)? Do I make it smaller so it’s easier for me to cart around and use for demo purposes? How deep does it need to be? How wide? First I measured Greg for width. With his arms crossed on his abdomen, 24 inches wide gives me at least an inch on each side. Ok, that’s good. Is 11 inches deep enough? And let’s go with 6 feet long. These are the interior dimensions. Then I called up my funeral director friend; he suggested 6.5 feet long and 12 inches tall. Twenty-four inches wide is good. So, that’s what we are going with. I’m tired of thinking about it! I’ll deal with carting and storage later! I just need to make some decisions and get this thing made. My home funeral training workshop is in 2 weeks.

— I want it to look nice and I want the wood to be finished on the outside. Little did I know that this is an important consideration because this casket might be stored for a long time and finishing helps keep it in good shape. We don’t want moisture creeping in and causing it to warp and mold. I live in Michigan, after all. So what kind of finish is there that is non-toxic and environmentally friendly

  • In the extraction and manufacturing process?
  • In the shipping (how far will it have to go to reach us)?
  • In the application process (off-gassing – don’t want Greg to get sick!)?
  • In the ground?

–This is getting complicated! Greg had some definite ideas, but I wanted to check with a few friends. So, I contacted Don at Piedmont Pine Coffins. He suggested a 50/50 mix of tongue oil and turpentine, and gave me the names of his preferred sources. Unfortunately, tongue oil is not made in the US, but there is a turpentine manufacturer in Georgia that used sustainable practices in extracting the turpentine from the pine trees. Who knew?

— So now Greg and I have to decide: Do we order these products from far away or do we use stuff he can get at the local store (or that he has around in his shop)? How “green” do we want to be for this prototype? And is the extraction process of the local turpentine that much different from the Georgia variety? How concerned are we with that?

— This is as far as we’ve gotten to date. Greg says he can make the box itself in a day. But the application of the “finish” is going to take up to 5 days because it requires many coats and polishing and drying. The biggest thing I’ve learned from this is that there is no one right way to do it. We’re just making the best choices we can given what our values are, what materials are available, and the time and effort we can put into it. I plan to make a muslin liner and pillow for it. What kind of issues am I going to run into in doing that???

— I’ll post a picture of the finished product when it’s done. Maybe I’ll post a picture of it in use during the mock funeral at the home funeral workshop taking place on November 20. There’s still spots if you’d like to register!

Finally! Green Burial in Dexter!

After years of working on it, we have a new green burial option near Ann Arbor! The Forest Lawn Cemetery is developing a small but beautiful section where folks can be buried in a more environmentally friendly way. I’m working with Brian Koval, sexton, to make suggestions and help them decide layout and plot details, as well as beautification and markers. Now is the time to visit the cemetery and make your preferences known!

This will be an area on the tree-lined border of the cemetery. It will be close to the conventional section in an area that is currently being mowed. The cemetery has a lot of decisions to make. Will they continue to mow it? Will they plant native grasses or wildflowers instead of grass? How will they contour the graves to make the best use of the natural features that are already present? What kind of markers will they allow (and what do people want)? Three things we know:

  1. There will be no concrete grave liners
  2. They will not bury embalmed bodies
  3. The burial container must be bio-degradable.

No concrete grave liners means figuring out how to handle the settling of the ground that occurs as decomposition takes place. One cannot move heavy equipment (lawn mowers, tractors or front hoes) over a recently filled grave. Does that mean they will decide not to mow? How will they dig a grave with a front hoe near a recent burial? Will they decide to bury people in succession, filling one area first? Succession burial makes it easier for the cemetery, but will people be happy with not choosing an exact plot? And will they allow huge granite grave markers or just wood or stone?

Those who choose green burial also usually want more family participation in the burial. They won’t be allowed to dig the grave but they will be encouraged to help fill it in, if that is what is meaningful to them. They might choose to use a cart or wagon to transport the body. They might bury in a plain, pine box or a shroud. The cemetery workers and funeral directors involved will also have a lot to learn, like how to lower a body by hand, rather than using electronic equipment.

How does green burial look different? How does the graveside ceremony change? Why do people choose this option and what do they want? What appeals to you? I’m so glad that this option is now available close to where I live. Perhaps other cemeteries will follow suit. I’ll keep you posted!

End-of-Life Doula Training being offered

November 18-20, 2016, in collaboration with dear friend, published author and birth doula instructor Patty Brennan. To learn more and register, please go here.

Day 1:  Supporting the Dying Person and The Family – The Doula Model of Care

  • What is a “good death”?
  • Exploring the dying process
  • The needs of the dying and the family
  • Biopsychosocial-spiritual-cultural aspects
  • Introducing the doula model of care
  • Accompanying the dying (holding vigil, creating a peaceful atmosphere)
  • Facing fears and grief
  • Hospice and Palliative Care

Day 2:  Essential Skills for End-of-Life Caregivers

  • Scope of practice
  • Active listening and communication
  • Family needs assessment
  • Hands-on comfort measures & support
  • Self-care for the caregiver(s)
  • Networking and referrals
  • EOL Doula practice considerations

Day 3:  Natural After Death Care Workshop ~ Home Funeral and Green Burial

Day 3 can be taken alone or in conjunction with Days 1 and 2.

  • Current funeral practices in the U.S.
  • How to care for the body at home after death
  • Creating sacred space and funeral ceremony or ritual
  • Legal and cost considerations
  • How to locate and work with a funeral director
  • Special circumstances
  • Green Burial (What is it and where is it available?)
  • The importance of planning ahead
  • How to form a circle of support

What is an End-of-Life Doula?

An end-of-life doula accompanies the dying person and their loved ones through the dying year. S/he provides support, resources, education and friendship for those who accept and embrace dying as a period of life, not just an abrupt ending. This period of life may last a year or a day. It brings challenges and joys, sorrows and opportunity. The end-of-life doula adds a layer of support for both the dying person and their family to help them live life to the fullest.

End-of-life doulas enhance and empower, rather than usurp the role of friends, family, medical team and spiritual care providers. As more and more of us live longer and face chronic and life-limiting illness, the period of dying has extended from a few days or weeks to months or years. Medical care focuses solely on cure and treatment. Patients often feel adrift among medical choices while grasping for ways to live with illness in full awareness that death will come. Life choices include acceptance, growth and sharing gifts of love and preparation.

There is much meaning to be found during the “dying year” that is profound and life affirming. It is a time of opportunity and growth to be embraced, not shunned. The end-of-life doula guides and accompanies the dying person and their family as they explore this territory and live to the fullest during this transition time.

 

Effective June 27, Michiganders can designate a Funeral Representative

We are finally catching up to other states; soon it will be possible to designate someone to make your funeral arrangements for you instead of having to just leave it up to your next of kin. A Funeral Representative is like a healthcare advocate: they are authorized to make decisions regarding your funeral and burial or cremation. Until now, there has been no guarantee that your funeral wishes would be followed, because carrying out the funeral wishes does not come under the purview of the designated healthcare agent. Now you can rest assured that your funeral representative will be able to have decision-making capacity.

Here’s an example: Say you are a member of an unmarried couple. You have chosen your partner to be your healthcare representative, meaning you have written your end-of-life healthcare wishes out, signed a form that names your partner as the one who will make healthcare decisions for you if you can no longer speak for yourself, and your partner has agreed to do this. When you die, those rights go away and the next-of-kin, meaning your long-lost sister or someone you aren’t close to, is the one who is legally responsible for carrying out your funeral. If you wanted to be cremated, the funeral director had to locate the legal nest of kin and get their signature in order to do the cremation. Many people have been caught off guard by this; they had assumed that they would be able to request the cremation without a problem. Now, you may sign paperwork designating your partner as your “funeral representative” and your partner can authorize the cremation.The long-lost relative no longer has to be located and made to sign.

You can imagine the difficulty this has caused in same sex relationships, or in the case of someone wanting very specific after death care such as home funeral or green burial. It will be more likely that your wishes will be followed.

It is imperative that you plan ahead, designate a funeral representative that knows and will honor your wishes, and fully inform them of the type of funeral and disposition arrangements you would like to have. While you are planning and signing forms, you can also put aside money to pay for what you want. The

For a form to use, please contact me.