Friends, I can only keep up with one website at a time! I’m doing so much with Lifespan Doula Association and it’s going really well. For a full listing of events, our newsletter, blog posts and more, check out https://www.lifespandoulas.com/.
My good friend died recently. During her illness, I realized early on that I would have to try really hard not to try to be her doula because I was her friend first. Looking back, I did a lot of doula things, but it was always on the fly, spontaneous, and mixed in with friend things. She never asked for a sit-down doula consultation, but we did talk about end-of-life issues and decisions. One of the ways we did that was as she asked about my work and teaching. She quietly took it all in. Occasionally, in the midst of talking about our children or current events, she asked for information. I tried to be available to her when she needed me.
My friend was sick for a very long time. She went in and out of remission, was relatively well for years, and then months, and then declined slowly. About three to four weeks before she died she mentioned that the hospice nurse came the day before. This was how I found out that she was in hospice. She wanted hospice because she wanted to die at home and knew that, if/when a crisis occurred, her family would need support to be able to care for her at home and not call 911. She knew what she wanted and how to make it happen. Despite many crises in the last few weeks, she did not go to the hospital. Her family rallied to care for her, and she died peacefully, surrounding by their loving support, at home.
Her family cared for her after death as well. Over the years, I had shared several times about helping families to have a home funeral. I don’t know if she did Internet research, or even talked with her partner about the things we had talked about. But about two weeks before she died, she called me and told me that her partner wanted to keep her body at home for a day after death and have a home visitation. She asked if that was possible. I said it certainly was, and proceeded to tell her the story of my uncle’s death and home visitation last year, when the hospice nurse had helped my cousins wash and dress his body. I never talked to her partner directly about this. He did not call me after her death; he texted me when she was getting close and again when she had passed. I was informed about the visiting time at the home and attended. As I was saying good-bye to my good friend, he remarked, “The hospice nurse offered to help us wash her, but we said, ‘no, we got this.’ We did it all by ourselves.” They did it, as they needed to, as was right for them. My prayer is that knowing they did everything themselves will help them in their grief journey.
In 2014, the National Institutes of Health published the landmark report Dying in America in which they made several recommendations regarding end-of-life care, namely, that we need:
- Comprehensive person-centered, family-oriented end-of-life care;
- More education and better standards for doing Advance Care Planning;
- More end-of-life care providers of many disciplines who are better trained; and
- Better policies and payment systems to support high-quality end-of-life care.
What the Future of End-of-Life Care Looks Like
Recently, Next Avenue Blogger Denise Logeland published a summary of interviews with experts about What the Future of Caregiving Looks Like. They stated that in the next 10 years there would be:
- A great need for alternative care providers due to an aging boomer generation with fewer children;
- Better models that don’t require residential care facilities (keeping people at home);
- Entrepreneurs figuring out how to better use cell phone technology in caregiving;
- A noticeable gap between lifespan and “healthspan” (we are living longer but not necessarily in good health)
- More conversations about a “good death” with less technological intervention, at home;
- Robots sharing in caregiving;
- Intentional, inter-generational senior housing to reduce isolation and promote interdependence (rather than independence).
End-of-Life Doulas as the Solution
These recommendations and predictions point to the widespread need for end-of-life doulas, because end-of-life doulas:
- Provide high-quality, wide-ranging, family-centered, personalized care;
- Help people stay home, which is where most people say they want to die;
- Keep costs down (by helping people stay at home);
- Are “alternative care providers,” meeting the needs of aging baby boomers (one-third of whom are single and one-quarter of whom do not have children or support systems nearby).
- Are trained in Advance Care Planning; and
- Provide one-to-one compassionate, non-medical care and support.
In the future, robots and phone apps may indeed be able to help with simple caregiving tasks and monitoring, but they will never be able to help folks talk about a “good death” and how to prepare to die naturally at home. With the development of additional technological support systems and the increasing number of “elder orphans,” end-of-life doulas are even more needed to help individuals navigate the myriad choices at the end-of-life. It just makes sense, doesn’t it? We are living longer, apart from our family members (if indeed we have any), and wanting to plan ahead and die a natural death at home. Care facilities are becoming more expensive and isolating.
Personally, if it doesn’t work out to live with one of my children, I’d like to form a group home with my friends and hire a doula or two or three to live with us and take care of us. Doesn’t that sound nice? Won’t you be my doula?
Visit Lifespan Doula Association.
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 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:
- How do we make this as “green” as possible?
- 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.
- 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!