Welcome to Adeste. I am Susan Lawrence, a trained end of life doula. By definition, an EOL doula is available to attend (adeste) to someone. I attend to the dying person and their caregivers in a non-medical role.
How can I, as your doula, help you celebrate your life and honor death? That is entirely up to you!
Legacy: As we spend time together, you can decide the legacy you want to leave behind. Maybe you want to record your history or write letters to your friends and family. A photo collage? A vision board of the dreams you have for your grandchildren? Do you have poetry you wrote, but never shared and now is the time? Maybe it is that secret recipe you want to share. Video and audio recordings are a special way for your loved ones to hear your voice.
Vigil: There is the time of vigil, when death is imminent. How do you want that to look and feel? I am available to sit with you and offer respite to your family and caregivers, to answer questions, listen, and most importantly, to walk with you and your family in these last days and hours.
Grief Support: I am available to your friends and family to reprocess their emotions and if desired, assist with an annual celebration/remembrance of your life.
These moments matter. This is about you. This is your design. I will walk alongside you.
As an end-of-life doula and hospice volunteer, I am honored to ‘sit vigil’ with someone as they are actively dying. Healthcare providers may call this ‘transitioning’. This is the tender time as death draws near, and your loved one continues their journey away from their earthly body. What should you do? What can you expect?
Remember, death is typically not a medical event. Death will come to all of us; it is part of our life from the day we are born. Take your time to sit with your loved one. Say the things you want and need to say – most likely they are still hearing even if they don’t appear to be awake. Maybe you are ready to say you are sorry and you love them. Are you able to forgive them? Now is your opportunity.
Occasionally our loved one wants permission to leave. Reassure them that you will miss them, you will be ok, and they can leave when they are ready. Hold their hand, cradle them in your arms, stroke their hair. They won’t break, but be watchful of signals if they are uncomfortable such as wincing, flinching, or trying to move away. They will let you know. Tears are ok; you can let your tough side go for a bit. Your loved one might want to die alone. You could sit for hours and hours, and the moment you take a break (and you should!), they could take their last breath. You didn’t fail them by taking care of yourself and leaving their bedside. They wanted you to step away.
If possible, honor the wishes they outlined in a vigil plan. It might be music, readings, photos, candles or essential oils, touch, visitors, and rituals or celebrations. Soften the lighting in the room. Cover them gently with a fresh sheet or blanket. Do they have a favorite quilt? Open a window if they want to hear birdsong. A little fresh air will go a long way for them and for you. Gently put a little lip balm on their lips so they won’t dry out as they breathe through their mouth. Find a closet to stash the medical supplies; you won’t be needing them – why look at them? The less ‘medical’ the room looks, the more peaceful it will seem.
On a practical side, educate yourself to the signs and symptoms of imminent death (a future post). Hydrate. Take breaks. Walk down the hall; better yet, walk outside in the fresh air. Meditate. Children are curious and may want to be in the room; if so, help them manage expectations. This is a gift you can give to children and grandchildren – understanding death is part of life. They can say goodbye in their own way. Encourage them to draw a picture, write a story, or sing a song. Leave their favorite candy alongside. If they ask to gently touch a hand or cheek, let them.
Once your loved one has died, take the time you need to sit with them. There is nothing urgent right now. The funeral home does not have to come immediately. Call the hospice team if they were receiving hospice services. If in a nursing home or hospital, alert the nurse. If they died at home and didn’t have hospice services, call the police. Make sure to tell the dispatcher it is not an emergency.
This is the time to lean on friends and family to assist. Have a list of people who should be notified and ask someone to make a few calls for you. There is no need to rush. Many of us feel the need to do something. Now is not the time. And remember, be gentle with yourself – you have witnessed a very sacred time in your loved ones’ time on this earth. Reach out to a grief support group, the hospice team, or a counselor if your feelings are overwhelming you. And take all the time you need. Grief is as unique as each of us and we all have our own way of walking through it and with it.
What is a vigil and why would you plan one? A vigil plan outlines your wishes for your last days and hours; it is NOT your Advance Care Plan, but it should be part of your planning process. As you create your Advance Directive, consider your wishes. Having an idea of what you want will help your family, loved ones, and caregivers create the peaceful environment you desire. Leave a copy of your wishes with your Advance Directive so you loved ones will find it easily.
Would you like your bed next to a window so you can catch the fresh air, birds singing, or the sounds of your neighborhood? Maybe you want quiet while you complete your life’s work.
How about a favorite scent? Candles or essential oils can sweeten the air. Fresh flowers at the bedside (for me, no lilies!)? Do you have a favorite quilt or childhood ‘blankie’ you reach for when you need comfort? Fresh sheets?
Music is very powerful at end of life. Do you have a ’deathbed playlist’ yet? I am working on mine and every time I hear a special tune, I add it to the list.
Visitors – yes or no? Could a loved one or volunteer help manage ’traffic’ so you aren’t overwhelmed or do you prefer a big party at your bedside? Our pets are very intuitive; they will be aware that something is changing. Will you break the rules and allow your pet onto your bed?
The word ’ritual’ can mean many things to you. Your priest may see you for Anointing of the Sick. Your loved ones could bathe your face, hands, and feet in fragrant water. Do you have an elder or spiritual director on your ’team’? Now is the time to call them if you choose to have their company.
Could someone read from your favorite book? Charlotte’s Web? Dr. Seuss? Books of poetry? My new favorite poet is Jan Richardson. Mary Oliver is used often at the bedside and for good reason. Maybe you have favorite Bible passages or other spiritual readings. Whatever brings you comfort should be at your bedside.
Guided imagery (or guided meditation) has been shown to lessen physical pain, stress, and spiritual pain. Where is your ’happy place’? Your doula can assist in creating a narrative, walking you through that special place. Your loved ones will also benefit from closing their eyes and ’seeing’ your story.
A vigil plan is something you can create while you have the energy to consider the details. If you are unable to communicate these wishes a loved one, your doula, or a volunteer will help to create a peaceful room for you. You might be at home, a senior living campus, hospice home, hospital, or nursing home. Taking some time to create this peaceful environment will bring you comfort and allow your loved ones to remember the beautiful moments when you left your earthly body with grace.
It’s never too early until it’s not. You have heard that before and it is so true as you consider end of life. We can work together to creat the vigil plan that will bring you comfort.
An epitaph, much like a postscript to a letter, is a short thought or quote as a PS to the life you lived. You will find an epitaph on a headstone, grave marker, plaque, or obituary. A typical epitaph includes the name, years of birth and death, then a short quote. Oftentimes, it is a Bible verse that could bring comfort to the family. An epitaph can be humorous as well. For instance, you will find the quote “I will NOT be right back” on Merv Griffin’s headstone. Merv was a talk show host and icon in show business and there would be no more commercial breaks for Merv.
Plan Your Epitaph Day shows up on calendars on both April 6 and November 2 (Day of the Dead). Why leave your epitaph to your family? Get started on it now and add your thoughts to the file with your Advance Care Directive. You DO have a file, right? More on that later…
Shane Fischer shared his thoughts on writing your own epitaph. “Why write your own epitaph? That’s easy to answer – so others don’t have to do it for you. I am kidding of course, but there is some truth to that statement. I believe that every generation at some point believes they will discover immortality before it is too late; at least that is what I thought. However, acknowledging your own mortality doesn’t have to be as chilling as it sounds. Writing your own epitaph allows you to take stock and reflect not only on what you leave behind tomorrow, but what you are contributing today. There is a universe outside of ourselves that if put into perspective, focuses on what our lives mean to us. Writing an epitaph does not have to be morbid, just as one hopes a funeral does not have to be sad and morbid. It can be a celebration of life and fulfillment of your individual cause. By seeing an end, we might see the road more clearly. Makes sense, right? We decide what is meaningful by what we want to last beyond us. We also decide what is personally important to us and how we want others to remember us. The sooner we can define these ideas, the sooner we can live them out. Then, our lives truly become ours.”
A few ideas to get your creative juices flowing: “Died happy”. “Until we meet again.” “A life well-lived.” Ritchie Valens’ epitaph pays homage to his song, “Come on let’s go”.
Dr. Seuss’s epitaph has been repeated over again in many situations: “Don’t cry because it’s over. Smile because it happened.” ( Loveliveson.com )
Whether it is serious, humorous, a Biblical verse, or good advice, a well-written epitaph sums up your life in a few short sentences.
Shane Fischer is the creator of Inkknell.com. He focuses his creative skills on commemorative poetry and memorial writing to celebrate our memories and special occasions. Check out his website to see examples of his work. Shane can assist in getting your obituary or epitaph written; do it yourself and know it will be ‘right’ for you.
I like to think I know a bit about hospice, including the story of Dame Cicely Saunders, regarded as the founder of hospice in London after World War II. The idea was planted in her heart when she worked with a Polish refugee after the war, then as a volunteer nurse in a hospital. Focusing on the whole person care, Ms. Saunders established St. Christopher’s Hospice, considered to be the first organized hospice program. Crossroads Hospice
Jump across the pond to the United States. Dr. Bernice Catherine Harper is the first woman of color to earn a Master of Science in Public Health from Harvard (1959). Because segregation was rampant in Virginia, she was unable to continue her education there and moved across the country to complete her degree in Master of Social Work in California.
Always fighting racism and lack of compassion and justice, Ms. Harper worked tirelessly to find a way to provide hospice benefits to those facing end-of-life. She found the perfect platform to pursue that goal – by accepting a position with the U.S. Department of Health and Human Services where she worked for almost 36 years. She was pivotal in getting Medicare funding for hospice (1982), a benefit that proved to be essential to millions of people facing end-of-life. Her focus was to make sure patients would benefit from the care from a physician, a nurse, medical social services, and counseling at end-of-life. socialworker.com
Today’s hospice benefit includes those same services – physician, nurse, social worker, and chaplain. Many hospices offer integrative therapies such as massage, music, and pet therapy. Hospices also maintain a core of dedicated volunteers to offer respite for family and dedicated time with the patient.
Another woman of color to make a difference was Rebecca Lee Crumpler, the first Black female doctor in the United States. In 1860, she applied to the New England Female Medical College in Boston. She published A Book of Medical Discourses in Two Parts, and dedicated the book to “…mothers, nurses, and all who may desire to mitigate the afflictions of the human race.” PBS Newshour
After the Civil War, Congress created the Freedmen’s Bureau (United States Bureau of Refugees) as an agency for the emancipated slaves. Ms. Crumpler joined the Bureau and spent her time providing care to the people the white physicians refused to see – the emancipated slaves. New York Times. Ms. Crumpler died on March 9, 1895.
National Women Physician Day is celebrated on February 3 every year (since 2017) – to honor the birthday of Elizabeth Blackwell, the first woman to receive a medical degree in the United States. Women who choose to become a physician today can give a nod to Elizabeth as she forged a path for them in the 1800’s. In fact, according to Womenshistory.org, Blackwell was even considered “a bad woman for defying her gender role.” If those same social mores applied now, women would be turning the world upside down!
Medicine wasn’t typically a career path for women; however, according to AAMC , in 2017 more women than men enrolled in U.S. medical schools. Open any provider directory these days, and you will have your choice of women physicians in any specialty. For more facts and links about women in medicine, check out National Women Physician Day.
Cindy Long, M.D., is an OB/GYN physician with The Women’s Health Group in the Denver area. (Full disclosure – I worked for The Women’s Health Group for four years.). Dr. Long says the improved quality of life for her patients is “the most rewarding aspect of my job, to know that by showing up I’ve made a difference in someone’s life.” I have seen Dr. Long and other women physicians juggle busy schedules and family life including children and aging parents, presiding over committees, managing group or solo practices, mentoring, nurturing friendships, and making a difference every day by ‘showing up’.
So cheers to Elizabeth Blackwell for her pioneer spirit and cheers to the women physicians who are making a difference every day! Thank you!
Today, email and text messages make it quick and easy to communicate with our friends and family. Dash off a few lines and hit ‘send’. Whew! Took care of that! What about the low-tech, high-touch version of communicating with a letter you wrote by hand? Can you remember the last time you actually bought stamps (outside of Christmas cards)?
January 9-15, 2022 is designated Universal Letter Writing Week, and January 23 holds National Handwriting Day. On one level, these dates seem like a celebration of something outdated and time-consuming but how many times do you rush to open a bill or catalog? Never, right? How about that handwritten envelope tucked among the junk mail? Almost like finding a treasure!
Challenge yourself this week to write a letter, or even one for each day of the week. Write a letter to a relative, a teacher who helped you along the way, a friend whose heart you hold dear. Write a letter and tear it up. Write a letter to yourself. A letter to your spouse or children or parent. Maybe someone close to you was recently diagnosed with a terrible illness. They would appreciate some good news! Or maybe a dear friend is dealing with the death of someone they loved dearly and verbal communication is tough right now.
Letter writing can be a special legacy project for someone who is facing death. These letters will be treasured for years to come. I had the honor of writing letters for someone who wanted to say a few final words to his loved ones. Carew Papritz wrote an amazing little book, The Legacy Letters. This book was written as fiction from the voice of a husband and father to his wife and children, but served well as non-fiction too. Quite a gift, filled with advice and deep love!
I saved a few handwritten notes from friends, and it is like a warm hug when I find them tucked away in a book, or my planner (yes, I still have a paper planner!). It’s not that I haven’t received heart-felt emails in the past; the handwritten notes are always so special!
You don’t need to have beautiful penmanship (we didn’t all have Miss Mitchell for 7th grade English!). It truly IS the thought that counts! No need to worry about spelling. I doubt anyone will send your note back with red pencil corrections (again, Miss Mitchell!).
Take some time to write, by hand, a note to someone. Someone who is homebound due to illness or debility would love to open the mailbox and find an envelope that isn’t sent from a business. Start a letter-writing campaign for someone you know who could use some cheering up. A friend once posted a request for cards to be sent to her mom after she was diagnosed with Alzheimers. She loved the stamps and the outpouring of cards and letters delighted her! The USPS creates great commemorative stamps – I have Sally Ride, Elvis, First Responders….and of course our flag and flowers. A basic stamp is 58 cents right now and a postcard stamp is 40 cents to take your missive from one coast to the other!
Find some lovely stationery, or grab a sticky note. Maybe you prefer fountain pens over ball-point pens. A pencil, marker, or crayon will do the trick. The idea is to let someone know you are thinking of them and took the time to share your thoughts with them.
Here are a few resources to get you started: The Legacy Letters by Carew Papritz, The Gift of a Letter by Alexandra Stoddard, The Pleasures of Staying Touch by Jennifer Williams.
Counting down the days until the holiday shopping frenzy begins? Checking your list twice, three times, then checking your budget four times? And now comes the ‘I don’t know what to give Grandma/Grandpa/auntie/neighbor because they don’t need more things’. Here are a few ideas to get your imagination revved up.
The #1 request on many seniors ‘wish list’ is the gift of your time. Stopping by for a cup of coffee, inviting them for a meal, reading to them, a mini-manicure at home, an evening drive to look at holiday lights, or simply sitting down for a chat will provide happiness that money cannot buy. Bonus – it is easy on your wallet! If your loved one is enrolled in hospice care, they might not be ‘doing’ anything. Your time will be the best gift.
Make life a bit easier. A jar opener, magnifying glass, clock with a big face, arm rest organizer, a gel seat cushion are some options.
How about some memories? A photo album/calendar/blanket can give your loved one hours of enjoyment. If your special person has dementia or Alzheimers, photos can be a way to connect with them. Record some of their favorite music; oldies are especially good for those with Alzheimers.
Thinking safety? How about a medical alert device to provide peace of mind for both of you? Non-skid slippers for those colder nights. A video doorbell with a speaker so your senior won’t have to get up to answer the door (make sure you install it or have someone do it for your senior).
A weighted blanket can feel like a gigantic hug and might even decrease anxiety and improve sleep. Weighted blankets would not be recommended for those with chronic respiratory or circulatory issues, Type 2 diabetes, asthma, low blood pressure, or claustrophobia (www.sleepfoundation.org).
A little pampering can go a long way. Do you know of a hairdresser who will make a house call? Cook a few meals for the freezer (include directions for re-heating), or have a meal-delivery service do the cooking as a special treat.
Audiobooks are available for almost every interest possible. Jumbo playing cards. Puzzles (swap with some friends), coloring books or art supplies, or if they are still writing, a journal or letter-writing supplies and stamps.
Our seniors don’t want more ‘stuff’, but they might enjoy the suspense of a gift to unwrap. Remember, your time is still the most precious gift you can share.
When is it time to consider adding a doula to your team?
Is time limited due to a terminal diagnosis?
Are you tending to a loved one and don’t know how to be helpful?
Did you hear the word ‘hospice’ and can’t wrap your head around the idea?
Are you grieving the loss of a dear friend or family member and feel lost?
Are you a caregiver to a family member or friend and need a little support or respite?
Do you need an advocate at your next physician’s visit?
It might be time to call the doula.
Navigating serious illness can be a lonely place. It is easy to spin out of control on some days, be empowered on other days, and occasionally curl up with your favorite blanket and give yourself a well-deserved ‘time out’ day. Giving yourself permission to embrace all the messy work that goes along with such raw emotion is a great start.
Some people recruit a team to assist with a few of the challenges. Others want privacy and solitude while they face big decisions about their care. Occasionally, denial is the place we need to live until we are ready to take the next step. The message here is that the journey is yours and you can write the script.
Is it time for a doula? A doula will give you the space to sort out your emotions. A doula is that caring, neutral person in your orbit whose feelings won’t be hurt if you are having a bad day. A doula will provide respite for your caregiving spouse/family member. Some doulas (not all) will attend a medical appointment with you and be another set of eyes and ears. Many doulas are well-versed in hospice care; some are volunteers with hospice in addition to their own doula work. Doulas are not a replacement for hospice, but they are familiar with hospice services in the area. Doulas are also very well-connected in the end-of-life community so if they don’t know the answer, they know someone who does. In other words, doulas ‘have people’.
Obviously, you have read this far so you might be thinking about reaching out to a doula. Call one; call a few and check out the chemistry. It is never too soon to have another member on your team.
I am here to answer your questions and would be honored to be a part of your journey.
The time has come. Maybe it is right around the corner. You want to add a doula to your team. Where do you start? How do you decide who is right for you? Here are a few things to consider when choosing a doula.
Choose wisely. A doula can be a trusted companion during a very intimate time of your life and you want to make sure you are comfortable with this person in your home, at your bedside, and with your family and caregivers. There is chemistry in all our relationships including those at end-of-life. Choose a doula you can trust, confide in, and yes, even laugh with during this time of unknowns.
Interview a few doulas if you want to compare personalities and styles. Doulas will vary in personality, availability, fees, and services.
What do you expect from the doula? Are you looking for someone to be available 24/7? Phone support only? A mix of in-person visits and phone/online support? Do you want them at your side during your final moments? Do you want them to work with you to create a legacy project or write letters to your loved ones?
Fees. Ahh, the sticky conversation. Some doulas volunteer their time through community, churches, or hospices. Many are self-employed and have hourly rates as well as package rates. What is included in their packages? How do they bill? What form of payment is preferred? Some doulas offer a complementary first visit. Feel free to ask!
Does the doula have reliable resources in case there is an extended vigil or they have their own family emergency? Most doulas are well-connected to a group of colleagues who can step in if there is a need at the last minute.
Where to find a doula? The Minnesota Death Collaborative has a Professional Member Directory. National End of Life Doula Alliance created a proficiency badge for their members to provide standardization in the field; there is a directory on their site. International End of Life Doula Association (INELDA) is a well-known training program and has a membership list. Doulagivers is another good program with a directory. Search online. Ask your hospice provider if they utilize doulas as volunteers. Ask your friends and neighbors.
It is not too soon to contact a doula. I am happy to answer your questions!
You may know what an end-of-life doula WILL do, but do you know what a doula will NOT do? There are two hard stops for me – money and medication. The other two items – insurance and orders – do not fall into the scope of doula services.
Will a doula manage my money? A doula will not handle your finances or pay your bills. There are bankers, financial and estate planners, and hopefully family members to assist with your money matters.
Will a doula give administer my medication? A doula typically doesn’t administer medication, but can observe you taking your pills on your schedule. If you require assistance with meds, a special contract could be initiated outlining clear expectations. I am not licensed to write prescriptions; this will be done through your medical provider or hospice team.
Will a doula bill our medical insurance? At this time, doula services are not reimbursed or covered by medical insurance, Medicare, or Medicaid.
Will a doula change hospice or physician orders? As a doula, I serve in a non-medical role. I do not make changes to your provider/hospice orders. As part of your care team, the doula is another set of eyes and ears for you and your family. If there is a change in your condition, your doula may contact other members of your team and family so care can be adjusted if necessary.
You will have many more questions for your team – it is a good idea to keep a notebook handy to write down your questions as they come up. Encourage your family and caregivers to add their questions to your notebook so they can be addressed as soon as possible. Please don’t hesitate to call your provider, hospice team, or doula if you have an urgent question.