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Every Story is Different

I recently spoke with Sarah, the Social Work Supervisor with Grace Hospice, to get her take on the role of a social worker at the end of life. As a doula and hospice volunteer, her comment “Every story is different” resonated with me. Every patient. Every family. Every journey. Every story.

As a hospice volunteer, I hear about the social worker visits – I see how they interact with the team, I read their notes in the journal, and I hear about their creative solutions when working with patients and families. But their work is more far-reaching than a note in a journal or a scheduled visit with the people they are serving.

As a vital player on the hospice team, the social worker walks alongside the patient and family without an agenda – they care for the patient, family, and entire support system. They are at the bedside to listen. And listen deeply without judgement. So many messages are heard in between the lines. I know well from my doula and volunteer work that listening is the best gift we can offer. Patients and families might come to hospice in denial about the seriousness and trajectory of their illness. The social worker will sit. They listen. They bring rapport. They keep an open mind. They empower the patient and family by supporting their goals for end of life.

One of the biggest roadblocks with the dying person and their family is understanding ‘comfort care’. By now (hospice admission), there has been a shift in their medical care. They no longer seek curative treatments. No more testing. No more doctor appointments for that terminal diagnosis. That can be difficult to comprehend. Years ago, I worked in a radiation therapy department at a large metro hospital. My patient sobbed at the end of her last treatment – she felt as long as she was ‘doing something’, she could fight off the inevitable. The inevitable comes. Let’s make this as comfortable as possible.

The postscript to everything….’then there was Covid’ is very real in hospice. The pandemic has demanded change in every part of our lives, including hospice care. Many social work visits have been done by phone or video. Families are thankful for the support, no matter how it looks. Creativity became part of the daily round.

I asked Sarah about self-care for social workers and her advice is appropriate for anyone who chooses to work with those at end of life. Social workers, and other helpers can often forget to care for themselves. Her advice is to establish personal and professional boundaries, like any other helping profession. Ask for help if you need it. Connect with your resources. Find an advocate. Schedule time to move. Get outdoors. Don’t forget to dedicate some time off to get away. Walking with patients and families at end of life is the most rewarding work I have ever done, or ever will do, but it will take its toll if I don’t look out for myself too. Taking care of ourselves shouldn’t be an afterthought.

March is Social Work Month. If you are fortunate enough to know a social worker, thank them for the creativity and resourcefulness they bring to every patient/client encounter. And if you don’t personally know a social worker, find one and get to know what they do. They work in hospices, schools, hospitals and clinics, private practice, prisons, military, and senior centers (I am sure I am missing something).

My heartfelt thanks to Sarah with Grace Hospice for assistance with this piece.

If you have questions about end of life care, please call me. Let’s talk about your intentions. The best time to make a plan is before you need one. Decisions made during a crisis are usually made with emotion. Let’s do this ahead of the crisis.

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Welcome to Adeste LLC

CELEBRATING LIFE AND HONORING DEATH

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.

Who Doesn’t Love a Good Story?

We grew up on stories – the uphill climb (both ways) in a blizzard, the thrill of a championship game, chasing chickens in the yard to ready them for dinner that night, where you met the love of your life, the first driving lesson….the list goes on. Why? Because we all love a good story. We love, and need, to tell them and we love, and need, to hear them.

April 27 is National Tell a Story Day. George Rafeedle created this day in 2009 to help us understand the value of the oral story. This day is our reminder to share our stories and encourage others to do the same.

My kids went to story hour at the library. New stories every week by the librarian who would change her tone and facial expressions to match the words in the books. I listened to my Auntie Evie tell stories of growing up on the Red Lake Indian Reservation – she was making mud pies in her yard when she met the ‘boy’ who became her husband. High school athletes revel in the stories of their critical games and championship victories. These stories can become embellished over the years and will develop a patina of their own. We all remember different details of events and will tell the story the way our memory holds them.

Years ago I heard Barbara Kingsolver read from her book, The Poisonwood Bible, at the Tattered Cover bookstore in Denver. I was captivated hearing the author read her own words in person.

I wish I would have teased more stories out of my grandma who was the first (and only) in her family to go to college and make a career. Or stories from her sister who homesteaded in Montana as a young woman. I get impatient waiting for the computer printer to spew out two pages; I doubt I was cut out to be a homesteader, but she is my ancestor – I have her DNA! Fortunately, my grandma wrote down the basics of her life so we have some history – she lived to 92; I am sure there were many tales untold. It would have been so much sweeter to hear her tell me the stories.

I challenge you to celebrate Tell a Story Day. Call a relative and ask them for a bit of family history. Your children’s stuffed animals would love to hear a story. Make up a fun tale at the dinner table with your family. Lessons are learned in our stories. They become part of our legacy. We will take many stories to our grave, but we have many to tell.

#tellastoryday #legacy

Funeral Directors – Not Always the Man in Black

March 11 is National Funeral Director and Mortician Recognition Day

Your head is reeling from the death of your loved one. Funeral? Burial? Cremation? Celebration of Life? Zoom service (thank you, Covid-19 pandemic)? Online obituary? Sudden death? Expected death in hospice? Is this a child? Military personnel? Religious affiliation? Paperwork? And don’t forget to add in family dynamics!

The last funeral I attended was for a classmate. I drove in from out of town, attended the service, had the ‘lunch’ in the church basement, shared some memories with classmates, then drove home. It never occurred to me all the planning that happens before, during, and after a funeral.

My recollections of funeral directors are the staid, quiet men wearing black suits, standing somewhere in the back of the church, directing ‘traffic’. These days, women are finding a calling as funeral directors. According to the National Funeral Directors Association, more than 60% of mortuary science students are women. Many of these women are also wives and moms and have a life outside the traditional black suit. What?! They cry, laugh and joke, and have feelings. Lots of feelings! They are deep listeners, organizers, and they possess super-genes for compassion and creativity.

This past year, I have gotten to know Mandy, a funeral director with Mueller Memorial. Mandy considered a career as a physician but found her calling as a funeral director. There is much more to the funeral director than the person we see at the back of the church. For Mandy, the most rewarding part of her job is helping people start their grieving process. She meets with families when they are most vulnerable and exhausted. I imagine there is chaos now and then. SO many decisions to make! Not every family made arrangements in advance – something I highly recommend!

The funeral director not only arranges and directs the funeral ceremony – they also coordinate transportation of your loved one to the funeral home/crematory and cemetery (even if they died out of state or in another country). They assist with writing an obituary (sometimes the words are hard to find), they file the appropriate paperwork (legalities)….the list goes on. Basically, they attend to all the details, including the ones you didn’t know existed.

Not all deaths come peacefully during the 9-5 workday. Funeral directors work with families who had to say goodbye to a baby or child much too soon, loved ones lost to suicide, sudden death such as a heart attack, accident, or crime. They are the listeners to the military and first responders’ families when a loved one dies in the line of duty.

Covid-19 has created the need for creativity by conducting funerals and memorials virtually. Who would have imagined a funeral by Zoom? Virtual funerals and memorial services can now include family and friends from all over the world with a simple online link.

Not everyone is a savvy shopper when it comes to funeral services. Grief will sometimes dictate what we spend – not a good idea! Cost is always a consideration, so make sure you ask for a detailed list of everything that is included (or not). If this is a cremation-only company, get details on what is provided (or not). A trustworthy funeral director will help you find a way to honor your loved one within a reasonable budget. There are always ways to spend more money, but it doesn’t mean you loved your person more if you have an elaborate, expensive funeral. Most funeral homes have a pre-planning specialist who can meet with you to discuss your needs and budget. If you can, tend to the details in advance. The perfect time is while you are creating or updating your Advance Care Directive. Your family will thank you for this loving gesture. If you haven’t taken care of your Directive, call me – I will walk you through the forms.

Cheers to the funeral home directors! Thank you for taking care of our loved ones. Thank you for being patient with the families who are not at their best when you meet them. And thank you for tending to all the details, large and small!

Special thank you to Mandy with Mueller Memorial for guidance on this article.

Independent Seniors? We all know one ~ Let’s keep them that way!

February is Senior Independence Month. I bet you didn’t have that one on your calendar! Parents, friends, and relatives are aging better than before (outside of the Covid pandemic) and many are still living independently. While some seniors are still in their homes, many have moved into apartments, senior housing, assisted/independent living facilities, and a number of them have transitioned into nursing homes when their needs dictate a new level of care. According to Pew Research, 27% of adults over 60 years old in the U.S. live alone compared to 16% in 130 countries and territories around the world. Multi-generational families are more common outside of the United States, so there is built-in companionship and someone is always available if a need arises.

Just because our loved one took another trip around the sun, doesn’t mean it is time to take over their lives. There are times when living independently might not be safe, but for the majority who are managing quite nicely, a little help now and then may be appreciated.

Safety is the obvious #1 priority for our seniors. Once the safety needs are met, there are other needs: nutrition, health and wellness, social interactions, and finances. How do we address those, especially when we cannot be on-site with our elders, due to Covid restrictions or we live across the state or country?

Safety: If you are able to visit with your loved one in their home, take a quick check in each room. Remove tripping hazards such as throw rugs and electric cords crossing over traffic areas.

Look for fire hazards. Is a space heater too close to the upholstery? Frayed cords? Burners that won’t shut off? Does the heater/AC work optimally?

Fall prevention: repair broken steps (if they are in their own home). Check to make sure their walker, cane, and/or wheelchair are in good working order. Do they have to stand on their tippy toes to grab a heavy bowl, canister, or their favorite coffee mug?

Check the faucets so they turn off completely without running and overflowing the sink. Is their furnace/AC working optimally? Make sure their contact information is up to date with their medical alert systems. You can discreetly check these things when you are able to be inside their home. If they live nearby, stop in with a little treat now and then so you can get ‘eyes on’ them.

Nutrition: Is your loved one eating well? Have you noticed weight loss or gain? Do they have access to groceries? If you are unable to do the shopping for them, consider a grocery delivery service through one of the stores or companies in the business of delivering food. Maybe Meals on Wheels is an option for them. If they aren’t eating well, ask about their dentures. Ill-fitting dentures will prevent people from eating healthy foods that require some chewing, leading to skipping out on nutritional meals.

Health and Wellness: Is getting out for fresh air an option? Are they getting exercise by doing a few laps around the halls in the warmth and security of their building? Fall risk can be lessened if their muscles are getting used daily. Have they had an annual exam with their medical provider? A yearly visit, or more if warranted, is the time to discuss medications and assess them for any potential cognitive issues. Most medical offices will allow one person along during the visit, even during this pandemic. Take notes and make sure your loved one understands any changes to medications or tests that were ordered. Leave them with simple directions – the medical office can feel overwhelming to many seniors and they may not remember key points of their visit.

Social Interactions: Does he/she like to play games? Physical distancing during the pandemic prevents us from sitting around the table playing Scrabble or cards, but there are numerous online games available if they have internet access. A puzzle, a word game book, knitting or other needlework…think of ways to keep their brain engaged, even if done as a solo activity. If your person is even a little bit tech ‘savvy’, they may enjoy Zoom/Facetime calls with far-flung family and friends. Help them set up an email account and find their friends online so they can connect.

Finances: If your senior is willing and able to manage their own finances, great! They may appreciate you looking over the checkbook occasionally. For many seniors, money matters are very private. It doesn’t hurt to ask them if they feel comfortable taking care of the numbers. For now. They may need help in the future, but handling a checkbook can be very empowering for some, especially if they had to learn it later in life.

Taking a few steps to ensure the safety and well-being of your senior will allow them to enjoy their life and maintain independence and give you peace of mind.

If you suspect elder abuse (physical, financial, emotional), talk to the facility administrator or home healthcare agency for an action plan; you may have to remove your senior from harms’ way. Minnesota has a website to report vulnerable adult abuse. The U.S. Department of Health & Human Services has a website available to report abuse. You can contact them here.

This Big Puzzle Called Life

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Judging by the posts on Facebook, I am not the only one breaking out a jigsaw puzzle to help pass the stay-home-and-stay-safe time.  As I worked on puzzle #2, I realized a few things.

In life, I sometimes try to fit pieces in where they don’t belong, but they might seemed right at the time.

In life, it is hard to see the big picture, one small piece at a time.

In life, there are a limited number of straight edges; all the rest have nooks and crannies.

In life, we sometimes miss a piece and we feel unfinished.

Maybe a special person in your life died.  Maybe a relationship, or your job, or your car died.  You might be missing one or more pieces to the big puzzle called life.  It is still a beautiful picture and the pieces were worth the time it took to match up.  Take time to savor this sometimes-complicated-not-all-straight-edges life.

What to Do When You Don’t Know What to Do

The current, and not-so-short-lived Covid-19 virus has created new challenges for us when we want to be at the bedside of our dying loved one. Maybe our visits are restricted due to the pandemic, work schedules, or geography. How do we connect with our loved one when we can’t be at the bedside? How do we honor our person while they are dying, or if we missed their last moments?

First of all, take a deep breath. Say their name. Hold that breath and hold them close to your heart. That’s a good beginning! With a little creativity, you can set aside a little space to help you feel connected to your loved one.

Create a small altar in your home or yard. This could be a table, a tray, or a part of your garden – designate it as a sacred space. Add little mementos, flowers, candles, a scarf, even a rock that reminds you of your special person. Light the candle, say a little prayer or meditate for awhile. Keep the altar in your home or yard and take a moment daily to spend time with your memories.

Play their favorite music, learn their favorite song or hymn.

Find a photo of your person, set it on the table and have a cup of coffee with them. Talk to them. Cry, laugh, tell stories, share your secrets – this is your time.

Cook or order out their favorite meal or food. You can do this alone or share a meal over the miles by Zoom or FaceTime. If you and your friends or family are far-flung across the globe, pick a date and cook their favorite recipe. Send photos to each other of your finished dishes.

Find a special date (maybe their birthday) and wear their favorite color.

If the date/time of day they died is hard for you, try to think of it as a nudge from them and they are sending you a message that all is well.

Collect their favorite book titles or quotes on pieces of paper. Add them to a scrapbook, use them as bookmarks, or put them in a fireproof container and safely burn them. Once the ashes have cooled, add them to your garden.

Tie colorful ribbons on a tree in your yard. Write their name, a memory, or your thoughts. As the ribbons blow in the breeze, they will be a colorful reminder of your sweet times together. (I did this with a tree in our yard and it gets more colorful as I am reminded of more loved ones from my past.)

Create a rock garden and write special words or thoughts on a few of the rocks. Keep adding to the collection. Maybe include a small plant or two amid the rocks.

You might have one of their old flannel shirts or concert teeshirts. Wear it to feel them close to you, or make the shirt into a pillow and hold onto it on those days when you need a hug from them.

Bring muffins or cookies to the nurses who were at their side in the hospital or facility. It feels good to connect with those who were caring for your person. Even a simple thank-you note to the staff or hospice team can make you feel closer to your loved one.

Share their favorite hankies or scarves with their close friends. Bonus…they are inexpensive to mail!

If they had a favorite server in a restaurant and you live nearby, get a meal and leave a tip for them in the name of your person.

Find a way to celebrate your loved one in a way that touches your heart. You can be close to their spirit even when you are miles (or a pandemic) away.

To Grandma Walt

A Prayer Upon Learning of a Death by Eli Effinger-Weintraub

[NAME], I honor the body that you were
The words you spoke
The passions that moved you
The love you shared
The life you lived.

These were not always easy to live
Or to live with
But they were always you,
And I honor you in that wholeness.

I grieve that you are no longer present in my life
I regret that I could not be with you at the end
I allow myself to hurt and to heal
Whatever form that takes
However long it takes

Whole and holy Earth, take back the body of [NAME] that was formed from you
Make new forms and lives from it
May a piece of [NAME]’s life infuse the new lives that grow from it.
May the passing forms of this life and the tears of our grief sustain the web of your creation.

Blessed be

I have read this poem many times and each time something new comes to me, but then again, isn’t that what poetry should do in us?  I think my grandma is on my mind more lately because I have recently connected with a relative in Norway – a third cousin.  That’s a story for another time.

My grandma’s life wasn’t always easy.  My cantankerous grandpa must have been part gypsy; they moved often and collected addresses in Minnesota, Florida, North Carolina, Arkansas, and back to Minnesota.

I grieve that she is no longer here.  We exchanged letters and occasional phone calls.  I miss that communication with her.  She told me once that a ‘boring life is better than a troubled life’…good to know when I think I am bored;  I keep that close to my heart.

I regret that I could not be with her in the end.  I was with her near the end, but not ‘the’ end.  I promised my grandparents I would take care of them when they got old.  I couldn’t keep that promise for many reasons.  I like to think that is one of the reasons I chose to become an end of life doula.

The Earth took her body (ok, her ashes) and on that same day, seven years later, my first granddaughter was born.  A new form.  A new life.

Now of course, this poem wasn’t written with my grandma’s name in it.  It is written for us to insert the name of our loved one.  I chose to put my grandma’s name in this poem this time.  She is the person I am missing these days.  Although she died in 1999, I miss her in different ways through different chapters in my life.  I miss her lefse when I am trying to replicate it – using a modern day recipe because I need a few solid directions.  I miss her tricking me into going to bed as little one – “Susie, will you warm up my side of the bed?”.  I miss her beautiful hardanger stitching.  I miss visiting her in Florida and eating the fresh fruit she always fixed for breakfast.  I miss playing her Herb Alpert and the Tijuana Brass albums on her TV/stereo console.  I miss her patience while listening to my flute music.  Most of all, I miss her common sense.  By the way, her name is Alice, but we always called them Grandma and Grandpa Walt (his name).  She became Grandma Walt…  The picture below was taken years ago.  Grandma  Walt created these beautiful dolls with her hardanger skills.

Who do you miss right now?  Will you take the time to insert their name into this poem and spend a few moments honoring their memory?

Sue and Grandma with hardanger doll copy

A Simple Chair Ritual for Comfort

Years ago, I was geographically far from a loved one when they were gravely ill.  Feeling lonely and helpless can be overwhelming.  If we can take a moment to catch our breath, those feelings will slowly get smaller and we can give ourselves the space to honor our loved one.  The following chair ritual was shared with me by Anne Murphy, a celebrant, vigil guide, and death educator.  You can learn more about Anne at her website, A Thousand Hands.

CHAIR RITUAL

If you are anticipating a death or experiencing a death and you are unable to physically be with your person ~

  • Find an area in your home where you can be seated and place a chair in front of you.
  • Place an object that symbolizes your person on the chair.  A few suggestions for an object: a photo, an article of clothing, or a blanket.
  • Sit down facing the chair.
  • Center your breath and body by breathing in to the count of 5 and exhaling to the count of 5; do this 3-5 times.
  • As you would open the door for a person who is visiting your home, invite your person to have a seat on the chair.
  • When you feel ready, speak out loud or silently as if your person is sitting across from you.
  • Share any words of love, gratitude, or forgiveness.
  • Receive any words, sensations, or images of gratitude, love, or forgiveness.
  • As you would walk a visitor out of your home, let your person know that you are complete.

Repeat as needed and adapt to what works best for you.

End-of-Life Doula Hotline

A group of doulas trained in compassionate listening, have launched a toll-free hotline for those who are struggling during the Covid-19 pandemic.  I am humbled to be a part of this group – offering time and deep listening to those who are hurting and may not know where to turn for help.  Along with listening, the hotline has a rich resource list for those who may need other professionals in their grief journey.

Doula Hotline Flyer

National Healthcare Decisions Day

National Healthcare Decisions Day is today!  This day is on the calendar to educate the public and the healthcare community about, well, their healthcare decisions.  So many people avoid the conversation and the decision-making process because they are not sure what they want or what the future might hold.  I advise my clients to plan for the ‘now’.  You can always update it later.  Maybe your circumstances change and you need to assign a different healthcare agent.  Maybe you realize you don’t want a ventilator – especially now in light of the Covid-19 pandemic; or maybe you want one!  Chances are you don’t understand the CPR procedure and the risks, so you avoid making decisions.

Starting isn’t as scary as it sounds.  Have a conversation with your loved one(s) and let them know what your wishes mean to you.  Create an Advance Care Directive, documenting those wishes.  If you are frail or have a serious illness, speak with your physician about a POLST (Provider Orders for Life-Sustaining Treatment).  Not everyone needs a POLST form.  Advance Care planning visits are reimbursable by Medicare.

There are tools available for you.  I am here to assist in this process.  Now is not the time to leave anything to chance.

I recommend (and use) the following tools:  Honoring Choices, The Conversation Project, Five Wishes, and End in Mind Project.

You have some time on your hands; call me and we can start the conversation.

I wish you peace and health in these uncertain times.