Pet Death Doula: Angela Shook

Meet Angela Shook, a compassionate and dedicated pet death doula who has made it her mission to support pet owners through the most difficult time of their lives – saying goodbye to their beloved pets and service animals. With a deep understanding of the human-animal bond and the grieving process, Angela provides a unique and essential service, helping pet owners navigate the emotional and practical aspects of pet loss. From creating personalized farewell rituals to offering emotional support and guidance, Angela is a beacon of hope and comfort for those facing the heartbreak of pet loss. In this interview, we’ll delve into Angela’s inspiring work, exploring the rewards and challenges of this vital profession, and how she’s making a difference in the lives of pet owners everywhere.

  • Can you share your journey and what inspired you to provide end-of-life care for companion animals?

I was first drawn to end-of-life care as a hospice volunteer several years ago, and like many, I was inspired to become an end-of-life doula after the death of a loved one. Although we had a complicated and difficult relationship, at the end of my grandfather’s life, I was able to find peace, forgiveness, and love. With this new understanding that death could bring healing and my respect for hospice care that he received; I wanted to help others also have a positive death experience. I have since made end-of-life care and advocacy my full-time passion and occupation. I own and operate Dragonfly End-of-Life services. I am an End-of-Life Doula, a Companion Animal Doula, and a Pet Loss Grief Specialist. I served on the board of directors of the National End-of-Life Doula Alliance (NEDA) from 2018-2022 and served two years as president. I serve on the board as a director for my local Humane Society and instruct both the End of Life Doula and Companion Animal Doula Courses at the University of Vermont.

I was drawn to serve as a pet doula for a couple of reasons. I wanted to expand my existing doula tool kit and end-of-life services. Second, I knew that my elderly Maltese, Bella, would need more support as time went by, and I knew that I would need to prepare myself for her eventual death. About a year after I trained to be a Companion Animal Doula, another family pet became very ill and declined very quickly. I found an amazing mobile veterinarian who helped us euthanize him peacefully at home. I was so touched by this experience and by the support that I received that I was inspired to work with her. We partnered two years ago, and I now work with her three days a week as a doula. Together, we help support families as they make the difficult decisions that come at their pets’ last days; we also help provide grief support as needed. Companioning these beautiful creatures and their loved ones has been so fulfilling and so very precious to me. These experiences also helped me give Bella the best possible care for her remaining time with me. Sadly, Bella died in August of 2022, and although my heart continues to ache, the knowledge and skills gained through my training and experiences have been invaluable. In addition to my two dogs (Chewy and Bentley), I offer foster/hospice care to pets who need a home for the last part of their journeys. I attached a picture here of Baby. She was a sweet, mostly blind older dog who needed hospice care. Although I only had her for the last few months of her life, she greatly impacted the rest of mine. I will be forever grateful that I had the chance to care for her at her end-of-life and for the many other pets since then. Since 2022, I have supported more than 200 pets and families through their end-of-life journeys, euthanasia appointments, and their grief process. 

Angela and Bella

As a Companion Animal Doula, I serve by helping assess the quality of life of a pet, working with the veterinarian team in creating and supporting palliative and end-of-life care plans, providing resources, preparing families and children for what to expect, and companioning during euthanasia and other care appointments. Assisting with after death care including burial, cremation and other disposition options, transportation of the body, memorials and legacy work, and grief support for as long as is needed. 

I am happy to serve clients with any type of pet. However, most often, I am asked to support the end-of-life plan for dogs and cats, and occasionally horses and rabbits.

  • You also work with service animals. Considering their unique bond and reliance on these animals, how do you approach supporting service animal handlers facing the loss of their beloved companions?

Because of the deep bond between a therapy animal and their handler, the loss of a therapy animal can upend the handler’s sense of identity and purpose in the world. Service animals are integral to their handler’s ability to be independent and mobile. These animals may pull wheelchairs, retrieve needed items, or detect impending medical events like seizures. Because of this highly interdependent relationship, when a service or therapy animal dies, the grief can be much more intense than when a household pet dies, and the adjustment to the loss can take much longer and be more extensive. In addition to the loss of a beloved companion, these feelings of loss and identity need to be addressed with sensitivity and a respectful acknowledgment of this unique and impactful relationship. 

  • Can you discuss any specific rituals or ceremonies you incorporate into your practice to honor the service and contributions of these animals during the end-of-life process?

To help memorialize the life of a pet and acknowledge the deep bond with their families, I often share ideas for ways to honor the pet after its death. Writing an obituary, creating memory gardens and scrapbooks, holding funeral services, and writing letters to the pet can also be part of the healing process. 

Here is a ritual that I share often and was recently published in a book that I co-authored titled The Doula Tool Kit

Seed Paper Ritual

Supplies: 

  • 1 piece of mesh material in a frame, such as a window screen or embroidery hoop, stretched pantyhose can also be used
  • 1 blender
  • 1 rimmed pan large enough to fit the framed mesh
  • 1 spoon
  • 1 old towel or large piece of felt
  • 1 large bowl
  • 1 pair of scissors
  • 1 cup non-glossy shredded paper (enough for one small greeting card’s worth of paper)
  • 1 packet of seeds (Use whatever type of seeds you like, but keep in mind the area of the country where it may be planted.)
  • 1 large bowl of warm water Optional: Dried flower petals Natural food coloring 

Directions:

Assemble your paper scraps and tear or cut them up into small bits. The largest pieces should not be bigger than a half-inch wide. The night before you plan to make the seed paper, take a large bowl and fill it with warm water. Add your shredded paper bits to the water and let them soak overnight. In the blender, mix the soaked paper with a little bit of added water to create a paste. Blend until the paper becomes thick. To create colored paper, add a few drops of natural food coloring to the thick pulp and pulse the blender to distribute. Set out your rimmed pan, such as a baking pan, and pour in your paper pulp, using a spoon to get everything out. If it is very thick or dry, add a bit of water to loosen it. You’re going to need to create an even layer of pulp on your screen. To achieve this, take your framed window mesh and dip it into the pulp mixture so that the pulp sticks to the mesh. Flip over and check to make sure that you have a good layer of pulp. If necessary, spoon some of the extra pulp to cover it evenly. Lay out your old towel or felt onto a flat surface. Place your mesh onto the towel and pulp up, allowing any extra moisture to get absorbed by the towel. Sprinkle your seeds onto the pulp layered on the mesh. Make sure not to cover the pulp completely with seeds. Gently press the seeds into the pulp so they don’t fall off when the paper dries. Take your framed mesh and flip it over so the pulp faces down but does not touch the towel. Allow the paper pulp to fall gently off your mesh and onto the towel. Try not to disturb or peel off in order to avoid tearing the pulp. Let the paper dry on the towel for at least one day. Check to make sure your paper is completely dry. If it has curled at all, place a few heavy books on top to smooth out the paper. Use the unseeded side to write messages or decorate. 

The intention behind this ritual is to create a way to share blessings, final goodbyes, and send messages to those who have died. By writing messages on this paper, they can be safely planted into the earth to create small memorial gardens or in pots inside. These messages can also be buried with our sweet companion animals. Seed paper can be purchased or easily created as a craft project that children especially enjoy. As the seeds in the paper germinate and grow into plants and flowers, the memories of our loved ones are honored in a beautiful and visual way. Although our beloveds may be gone from this world, our love, like the flowers, will continue to grow.

Angela and Baby
  • How do you navigate the decision-making process surrounding end-of-life care and euthanasia for companion animals, considering the ethical and practical considerations involved?

Making the decision to euthanize a pet is the most difficult and emotionally devastating part of being a pet caregiver. My priority is to support each client with unconditional positive regard and to serve them without judgment or my own opinions or agenda. It can be a challenging burden to act as God, and choose when your beloved pet will die and everyone will come to this decision in different ways. Even when we understand that this choice is an act of mercy and a final gift of love, it can be an emotionally distressing time. When a client contacts me prior to their pet’s death and is questioning the right time to consider euthanasia, I share Quality of Life information, assessments, and a calendar. I have used these many times and find them incredibly helpful. The calendar is easy to track with a simple happy or sad face each day and along with the assessment, can help the pet caregiver make the best choice possible for their loved one. If planned euthanasia is the decision made for a pet, it’s beneficial to share that they are not “killing” the pet, but rather the illness or the age of the pet has caused the death, and the family has chosen to relieve the pet of pain and suffering. That this is our last and most compassionate act of love that we can give to them. We are choosing to end their pain and allowing our own to begin.

  • Can you discuss any legal or logistical considerations companion animal handlers may need to address when planning their animals’ end-of-life care and disposition?

Today, there are more options for end-of-life planning and body disposition for our pets than ever before. Financial considerations such as cost and affordability, the size of the pet, spiritual beliefs and cultural values, and even where the pet owner lives need to be addressed. For those who would like to bury their pets at their homes, it’s important to first know the legal guidelines of the state, county, city, township and Home Owners Associations. Some areas require that the animal be buried at a certain depth, and some areas do not allow burial of pets even on personal property. For those who rent or do not have the space/ability to bury at home, cemeteries can be an option. Many community commentaries have a pet specific area and there are also many pet only cemeteries available. 

Cremation allows the ashes/remains to be returned to the pet owner if wished, and this can be a comfort to many. More recently available is aquamation which uses water rather than fire. This is a more environmentally friendly option and is gaining awareness and popularity. Additional options include: taxidermy, pet composting, freeze drying and body donation for educational/research purposes. These are all options for smaller domestic animals. With larger animals such as horses, special considerations for their size must be considered. Burying a horse is a big deal. It requires large equipment and available land. In some states with dense populations, burial has been outlawed, and other disposal techniques must be used. In addition to burial, large animals may be rendered, composted, or cremated. Disposal can be the hardest part for the owner/caretaker/guardian to be involved with, and this is an area where doulas can provide a lot of support. 

Prices for all of these options vary by area, and I work to gather that information for my client so that they have a solid understanding of their choices.

When I begin working with a client, I always share my Companion Animal Advance Care Directive Workbook. I created this with a former student, and it is such a helpful too

  • Can you share any initiatives or advocacy efforts you’re involved in to raise awareness about the importance of end-of-life care and support for pets and their people?

I find that offering community pet loss support groups and end-of-life education is a valuable way to not only help many others but it is also a great way to share the importance of the role of a pet death doula. I also connect with local rescues and shelters, groomers, trainers, and veterinarians to share my services and to see how we can work together to provide the most holistic and comprehensive pet care possible. 

  • What do you find most rewarding about your work as a Pet Death Doula, and how do you envision the future of end-of-life care for these special companions?

It is such a gift to witness the human-animal bond and to be invited into such a sacred and intimate space as the last few moments of such a beautiful relationship. I am gifted to witness great moments of unconditional love with each of my clients. I am so grateful. 

It is rewarding to help people through the loss of their beloved pets. So many times, pet loss is diminished and goes unacknowledged in our culture. It is still very much a type of disenfranchised grief. By supporting people through this loss, I hope to make them feel less isolated and more recognized. As heartbreaking as it is to lose a beloved pet, it can ease the pain a bit to not go through it alone. 

As more people become aware of this role, it is my hope that more pets will have a peaceful and pain-free end of life. It is a dream of mine that one day, a pet death doula will be part of all veterinary care plans and that all will have access to this additional compassionate support. 

  • What advice and resources do you have for others who choose the path of Pet Death Doula?

I encourage those interested in this work to invest their time and resources into education and training. I am very proud of the training that we offer at the University of Vermont and we recently greatly expanded and updated our course. 

Those interested can learn more here: Companion Animal End-of-Life Doula Professional Certificate – UVM Professional and Continuing Education

The University of New England recently started an End of Life Pet Doula course as well. Tracey Walker leads that program and she is an amazing pet doula and end of life educator. End-of-Life Pet Doula Certificate – UNE Online | UNE Online

There are so many wonderful books about the human animal bond, pet loss and grief. Some that I recommend are: 

How to Survive the Loss of a Pet: Comforting Tools and Practices to Embrace Your Grief and Heal Your Broken Heart (Audible Audio Edition): Cheryl Richardson, Cheryl Richardson, Sounds True

In-Home Pet Euthanasia Techniques: The Veterinarian’s Guide to Helping Families and Their Pets Say Goodbye in the Comfort of Home: Cooney DVM, Dr Kathleen A

The Other Family Doctor: A Veterinarian Explores What Animals Can Teach Us About Love, Life, and Mortality by Karen Fine

The Pet Loss Companion: Healing Advice from Family Therapists Who Lead Pet Loss Groups: Dolan-Del Vecchio, Ken, Saxton-Lopez, Nancy

An Introduction to Pet Bereavement Counselling: Murray, Dawn

And these two organizations have been so impactful to my work and have given me so much training and knowledge:

Association for Pet Loss and Bereavement – Free pet loss & grief support (aplb.org)

International Association for Animal Hospice and Palliative Care (IAAHPC)

I included a chapter on how to be a successful companion animal doula in the book that I co-authored with Diane Button and Gabby Jimenez:  The Doula Tool Kit: The Complete Practical Guide for End-of-Life Doulas & Caregivers: Button, Diane R., Jimenez, Gabrielle Elise, Shook, Angela

And for anyone interested in speaking to an active Companion Animal Doula, I am always happy to schedule time for a conversation and to answer any questions people may have. I can be contacted through my website here.

Coping Mechanisms for Navigating the Death of a Loved One While Estranged

  • Write a Letter: Consider writing a letter to your estranged loved one, expressing your thoughts, feelings, and unresolved emotions. This can be a therapeutic way to release pent-up emotions and find closure, even if the letter is never sent.
  • Seek Professional Support: Don’t hesitate to contact a therapist or counselor specializing in grief and loss. They can provide a safe and supportive space to explore your feelings, process your grief, and develop coping strategies tailored to your unique situation.
  • Create a Memory Box: Gather mementos, photographs, or keepsakes that remind you of your estranged loved one and create a memory box or scrapbook. This tangible tribute can serve as a cherished keepsake and a source of comfort during moments of grief.
  • Practice Forgiveness: While forgiveness may not be easy or immediate, consider exploring the possibility of forgiving your estranged loved one, yourself, or others involved in the situation. Forgiveness does not necessarily mean condoning past actions but can offer a sense of liberation and peace.
  • Connect with Supportive Communities: Seek out online or in-person support groups for individuals grieving the loss of an estranged loved one. Connecting with others who have experienced similar losses can provide validation, empathy, and a sense of belonging during a difficult time.
  • Engage in Rituals or Ceremonies: Create your own rituals or ceremonies to honor the memory of your estranged loved one in a way that feels meaningful to you. This could include lighting a candle, planting a tree, or participating in a symbolic act of remembrance.
  • Explore Creative Outlets: Channel your emotions into creative expression by engaging in writing, painting, music, or crafting. Creative outlets can offer a therapeutic way to process grief and express complex feelings that may be difficult to verbalize.
  • Practice Self-Compassion: Be gentle with yourself and practice self-compassion as you navigate the grieving process. Allow yourself to feel whatever emotions arise without judgment, and prioritize self-care activities that nourish your mind, body, and spirit.
  • Reflect on Lessons Learned: Take time to reflect on the lessons learned from your relationship with your estranged loved one and how it has shaped you as a person. Finding meaning in the experience can help you integrate the loss into your life and foster personal growth.
  • Honor Your Boundaries: Respect your boundaries and permit yourself to prioritize your well-being during the grieving process. This may involve setting boundaries with family members or others who may not understand or respect your need for space and self-care.

Living Funerals

Recently, a novel concept has emerged, reshaping the traditional approach to farewells: living funerals. Unlike conventional ceremonies held posthumously, living funerals provide an occasion for individuals to actively celebrate their lives while still alive and surrounded by loved ones. This blog explores the significance of living funerals, their origins, benefits, and the impact they can have on individuals and their communities. We will unravel the essence of living funerals and their transformative power in embracing life’s beauty.

Origins and Evolution 

The roots of living funerals can be traced back to various cultural practices and traditions that celebrate life and honor the journey of the living. From ancient rituals commemorating milestones and achievements to modern-day ceremonies emphasizing the importance of connection and presence, living funerals have shifted the focus from death to life itself. In recent years, individuals have increasingly embraced the concept of living funerals as a way to reclaim control over their end-of-life experiences and leave behind a meaningful legacy.

Creating Meaningful Moments 

At the heart of a living funeral lies the opportunity to create meaningful moments and memories that celebrate the richness of life. Whether gathering with loved ones to share stories, expressing gratitude for cherished relationships, or engaging in activities that bring joy and fulfillment, living funerals provide a space for individuals to reflect on their lives and their impact on others. By actively participating in their own celebration, individuals can find some peace and tranquility as they approach the end of life.

Healing and Connection 

Living funerals also offer a powerful opportunity for healing and connection for the individual and their loved ones. By openly acknowledging the reality of mortality and celebrating life in the present moment, living funerals can facilitate meaningful conversations, strengthen bonds, and provide a sense of closure for all involved. Through shared laughter, tears, and expressions of love, participants can find solace in the collective experience of honoring life and embracing the beauty of human connection.

Empowering End-of-Life Planning

In addition to serving as a celebration of life, living funerals can also play a practical role in end-of-life planning. Through active engagement in their own farewell ceremony, individuals can guarantee the fulfillment of their last desires, the acknowledgment of their preferences, and the preservation of their legacy. From selecting meaningful readings and music to expressing personal messages and intentions, living funerals empower individuals to shape their narrative and leave a legacy reflecting their values and beliefs.

Living funerals offer a powerful and transformative way for individuals to celebrate life, connect with loved ones, and find meaning and closure in the face of mortality. By shifting the focus from death to life, these unique ceremonies provide a space for reflection, gratitude, and celebration, fostering healing and connection for all involved. As we continue to explore new ways of honoring life and embracing the end-of-life journey, may we find inspiration in the concept of living funerals and the profound impact they can have on our lives and relationships.

Journey of Love: A Daughter’s Tender Care in Her Mother’s Final Days

I had the honor to have a heartfelt conversation with a wonderful lady who was a caregiver for her terminally ill Mom. In this moving exchange, we explore the challenges, triumphs, and profound insights that emerge from walking alongside a loved one on their end-of-life journey. From navigating the complexities of caregiving to finding moments of beauty and grace amid uncertainty, we delved into the raw emotions and experiences caregivers share in the face of loss and love. This is a poignant exploration of the human spirit and the power of compassion amid life’s most challenging moments.


You mentioned that it was your Mom who passed. What was her diagnosis? 

She had a Glioblastoma Multiforme, which is a terminal brain cancer. There’s treatment but no cure. There are no known risk factors. So it strikes at any age with any demographics or other risk factors that you may or may not have. It affects smokers and non-smokers equally. It’s really like the most unlucky luck of the draw that you could get. 

Wow, that’s really tough. How long was it between her diagnosis and her passing? 

About two years, which is longer than the typical prognosis. So we felt lucky that we had more time than we expected. 

How far into her diagnosis did you and your sister become her caregiver full-time? 

That was probably about a year, and I want to say nine months. Well, no, it’s probably even less than that. I think we only really cared for her in her home for about two months. 

Tell me a little bit about your Mom before her diagnosis. 

Oh my gosh. My Mom, I always say she was just a force to be reckoned with. Growing up, she would just make decisions and then make the thing happen. My Dad and Mom had this relationship where they were best friends and had nothing in common. They would both go and do their own thing, and then they would come back and tell each other about their adventure, whatever it was. My Dad is a real outdoorsman, and his job was outside, and it was typically during the summer; he could be working 80 hours, and then he would also fish and hunt and all those sorts of things. So, this one time, when I was in 5th grade, he had gone away for a weekend, and my Mom said, well, we’re going to paint the dining room. I said Okay? She’s said, your Dad is going to be mad. I thought, what else is new? So we moved the furniture out of the dining room and painted the dining room, waited until the next day, we did the second coat and moved all the furniture back in, and it was all done and put back together before Dad got back. So that’s the way that she was. 

She was just so vibrant, and she loved language. She was an unofficial sort of writer. I think she was blogging before blogging was a thing. She was doing it through email. As soon as email happened, she started writing this thing called “My Thoughts,” she would send it out to all her friends; it would just be on current events or what she was doing in the garden or what we, the kids, were doing. She would write this email to all her friends once a week, and people loved it. 

My Mom always only had part-time jobs. We lived on my Dad’s income, and she worked when she either got bored or when she wanted a little extra spending money. She had a job at a radio station one time, and she wrote their commercials. She loved language. When she got her diagnosis, language was stolen from her. She couldn’t read or write, and then, in the end, she couldn’t talk.

She was also a gardener. She could do every craft in the whole world. She could knit, crochet, sew, canning, and gardening. She was just a very vibrant person. 

How long between diagnosis and when you started seeing those signs, like, okay, Mom doesn’t completely feel like Mom anymore because she’s unable to do those things she loved so much?

After she got her diagnosis, the first thing they did was debulk the tumor. So, she had brain surgery first. After that, she seemed like herself but didn’t have as much energy. That happened really quickly. And then, with chemo and radiation, it just took all of her energy. Once, we went to a park for a family gathering and decided to take a walk. We got, I don’t know, maybe 50 steps in, and Mom said she just can’t do it. So, it was really quick from when she first got her diagnosis.

 It was a total fluke that we even found the tumor. She was at my house and said I don’t feel right. I asked what do you mean and she said my arm feels numb, and I just don’t feel right. I’m a nurse, so I took her blood pressure, and it was through the roof. Her whole life, her blood pressure was in the toilet. She’s one of those hypotensive people. She would be 90 over 40, and that was her normal. But this time it was, it was 218 over 100 and something. It was through the roof. So we went to the emergency room. They did a CAT scan with no contrast and didn’t see anything. They said she probably had a pinched nerve, making her arm feel numb. They said since she had been on vacation, she probably had higher sodium food, causing her blood pressure to be high. My Mom was a very healthy eater. Her favorite food was salad. And that’s what she ate on vacation. So none of that felt right, not at all. They discharged her with a referral for physical therapy and follow-up with her primary care physician. About two weeks later, she drove to work and she couldn’t remember how she got there once she was there. She tried talking to one of her friends but couldn’t make sentences. It was like she had a stroke. We went back to the emergency room, they did another CAT scan, and they did find a couple of tiny little bleeds. They said she needed to go to a bigger hospital. 

I took her to Buffalo, and they ran a battery of tests. They didn’t tell us anything, but she started to get her speech back and could make sentences again. 

So we’re in the emergency room, and they aren’t telling us anything. The nurse finally came in with some medication. She told us she was going to give her a seizure medication. I asked why because she wasn’t having seizures. The nurse stopped and asked if anyone had come in to talk to us. I said no. So she went to get a doctor. He came in, and he said, I promise you that you are having seizures because they’re focal point seizures. That’s why your arm is going numb. 

And then he didn’t tell us anything else, just that he was going to admit her and refer her to neurology. The next day, finally, a doctor came in and told us that they suspected a brain tumor and they needed to do more tests. They didn’t tell us what kind of brain tumor at all. They didn’t tell us whether it was benign, whether it was cancerous, they didn’t tell us anything. Later that week, she got the official diagnosis and a referral to Roswell Hospital. 

She started seeing a neurologist there. He’s the one who did her brain surgery for the first one. She wound up having two. She was discharged to home, and she was pretty normal, but then they started the chemo on radiation, and that’s when her energy just got zapped. 

What is your experience or assessment of navigating the medical system? Even as a nurse, it sounds like pulling teeth just to get them to pay attention. Was that the case up until then and not after, or was it like that the whole time? 

A little bit. Some of the care was very good, and we felt it involved a lot of work. But then some of it was not. And I understood. I know everybody is busy. Everybody has too much to do. So when she started seeing her neurologist, his name was Dr. Fensterbauer, which is German for window maker, and I thought that was amazing. He made a window in her brain. He was her window maker. So, I felt ignored the first time she was in the General Hospital. They would come in, kick the family out, do their care, let us come back in, and not say anything. 

I think there’s a real problem in how doctors talk to patients because they don’t make it easy enough for them to understand. They told my Mom that there was no cure; there was only treatment, and they could de-bulk the tumor. They could do chemo and radiation, and that will make it smaller, but it will never go away. They said it might give her some extra time, but this is what’s gonna come down the road. That was all fine. But then they decided to do a trial. They used a medication that was developed for lung cancer just to see if it would work on brain cancer, too. It didn’t help, but it changes the way the tumor will show up on imaging. They call it pseudo-progression. It wasn’t a real remission, and the doctor knew it, but all my parents heard was the remission part. 

They were so excited; they thought it meant she was getting better. They also tried lots of different things. They watched a documentary, Forks Over Knives, where if you do this diet, then it won’t feed your cancer, and your cancer will die. That’s not real, but I feel like they didn’t have enough support from the medical community to understand that those things don’t work. Your body does a really good job of maintaining its pH, and you might have an alkaline diet, but your body will not be in alkalosis because you do that. As far as educating my parents, there were humongous failures.

We then went ahead with her second brain surgery. I feel like we shouldn’t have done that at all. But she wanted to do everything possible. It wasn’t too long after the second brain surgery, and trying the trial meds, and then having like this, this real good news before her symptoms started to worsen. She couldn’t find the words, she would stutter, or she would just lose her train of thought in the middle of a sentence. 

So my Dad wanted us siblings to come to an appointment with her surgeon. The surgeon told us he couldn’t do another surgery at that point. My Dad just didn’t get it and asked the surgeon, what do you mean? You told me she was better. The surgeon said No and reminded my Dad that what she experienced was a pseudo progression, not actual remission. That was a devastating day for my Dad. So we all talked about it as a family and concluded that treatment wasn’t working anymore. So why should we keep doing it? It was not helping her. If anything, it was hurting. We went to talk to my Mom because she was admitted to the hospital when we spoke with the surgeon. She had the same reaction as my Dad.

She suddenly turned to me and pointed at me, asking what do *you* think? And I just said, Mom, I think it’s time to stop treatment, and just like that, she said okay. To this day, I don’t know why she needed my approval or opinion, but she just accepted it. 

We brought her home and got her on hospice. We made her as spoiled as we could. She lost her ability to walk; from there, it was fast. She just went right down. She lost all of her left side. She couldn’t move her arms. She couldn’t stand. We had to get a lift and a hospital bed and all kinds of stuff. Once she was on hospice, I think that those nurses did a pretty good job of explaining to my parents what to expect in the dying process, so unlike when she was hospitalized. It just felt like communication was lacking. Educating our whole family was lacking. This taught me that I can’t be a nurse to my family because I have too much emotion tied up in it, you know? I might know something for sure about a patient of mine and be able to talk to their family, but it’s different when it’s happening to my Mom. It’s just different. It makes a lot of sense for doctors to not treat their children. 

That makes sense. It definitely would take a toll on you. Even knowing what you’re doing as a nurse, but then Mom is the patient, that sounds really hard. Towards the end, as far as being her caregiver, would you say that you took less of a medical role and more of just a daughter support role? Could you separate yourself from the medical part?

 We were taking total care of her. We were cooking for her, feeding her, bathing her, changing her, and giving her comfort medication. Hospice here is very limited. A nurse comes out once a week. They send an aide out twice a week to do a bath. They’re typically there for an hour. They also send out a chaplain. He’s a volunteer, and he would come and sit and pray with her, but we were doing everything. 

So the chaplain came out, did she have a particular faith? If so, did it bring her comfort in any way? 

Yes, an afterlife was something that she believed. We grew up with half-time religion, is what I should call it. My Dad never went to church. We were Lutheran, and we would go to church until about when I was a teenager, and then we just stopped. I’m not sure why. But when my Mom was faced with her mortality, she very much wanted to go to church, and she made my Dad take her, but she was going to church up until the point when she couldn’t go anymore. But yes, she enjoyed the chaplain’s visits. They would stream church, and she loved that. 

She was very much looking forward to seeing her brother. And other family members, but especially her brother. He was her best friend. He died, and she missed him so much. What she was looking forward to the most was seeing him. 

Did you have any support networks besides religion and hospice? Did you find a community you could lean on or get information from people who had gone through this before you? 

No, and honestly, it didn’t occur to me to go look. I was so busy and wrapped up in everything that we needed to do to care for my Mom. I have an aunt, my father’s sister, who paid for a private duty aide for whenever my sister and I couldn’t be there. And that was our network. Nobody suggested I go find some support, and it didn’t occur to me. 

Do you think if it had occurred to you, you would have sought that out or accepted that sort of support? 

I think I would because it was just so emotionally draining. It was rewarding to care for my Mom, but it was draining. There were just so many emotions. We were pre-grieving losing our Mom a little at a time and even a big chunk at a time. I didn’t have anyone to talk to about it. I think that would have been nice. 

What advice would you give someone just starting out the same journey you went through? 

I would say definitely find support. Find a group of people who have had to join the worst club possible because they will think of things you don’t. Sometimes, you don’t know how to ask for help because you don’t even have time to think about the help you need. People could bring dinner on Tuesdays, and it would have been amazing not having to cook on Tuesdays. But you don’t even know what help to ask for because you’re just like in this whirlwind, and yes, you need support.  

I would also advise them to learn about the dying process. I’ve been in long-term care for a long time, and I know what’s going to happen. For instance, I call the final burn that happens with a lot of people, where they just one day wake up and they’re raring to go, and my Mom had that. 

She reached the point where the only thing she could say was, Ta-Da. And I don’t know if that was her first word, and that’s why it was also her last word. She could communicate with her facial expressions or her Ta-Da’s tone. So she woke up one day, and she knew my name. She could talk to me, and it lasted for a few days. 

My sister and I were trying to make holiday plans, but we didn’t know whether we would still be taking care of Mom or if we would not have Mom. These were the kind of conversations I was having with my sister. But then she did the “Final Burn.” And I told my sister we will have to plan for Thanksgiving with Mom because, obviously, she’s doing great. But she wasn’t doing great. I missed it. I’ve seen it hundreds of times and missed it because it was my Mom. 

Even though you have the training you do, it’s just completely different when it’s Mom. You can miss some of those things that you might have otherwise caught if it was somebody you didn’t have a close bond with. 

Yes, that’s how it is. So, I would suggest people to read books. Find some way to learn what to expect during the dying process, you know, like people don’t eat as much, and then it trickles down to the point where they don’t eat at all. And that’s okay. But my Dad didn’t know that. He kept saying she had to eat. And I explained to him that people who are alive need to eat. However, a person who has a body that is starting to shut down and is starting to die doesn’t need to eat. It was a hard conversation to have with my Dad. Hospice didn’t prepare him for that. They left their booklets, but who has time to read them?

What were some of its rewarding aspects? Did you find happiness, pleasure, or laughter anywhere during your Mom’s dying process? If so, what brought you that happiness or peacefulness? And to follow that up, was there any guilt around finding moments of happiness, laughter, or peace?

Something that made me smile was having a conversation with the same Aunt about how my Dad was doing. And she said, How’s your Dad doing, Honey? And I said, Well, he’s kind of in outer space. Without skipping a beat, she said, Honey, do you think that’s new, or do you think that’s always been right? And I laughed so hard. I hadn’t laughed like that in months. And she was right. My Dad has always been in outer space. But having awesome family connections was wonderful. 

Another time, my sister and I were both at my Mom’s house at the same time, which didn’t happen often. My sister lives about three hours away. However, she was able to take some FMLA time, and her job is very flexible and understanding. She would come and spend days, then go back, and then I would spend the time. So one time, we were there together, and my Mom just wasn’t comfortable. My sister asked if she was cold. My Mom said TA-DA! My sister went to put a blanket in the dryer and then brought it to my Mom. I said, that’s brilliant. And she said, Oh yeh, I’m spoiling her. Just little things like that would bring me joy.

Once, my sister took this picture of herself from underneath, and like the clouds above her, it was beautiful. So I took my Mom outside in her wheelchair for a little walk. And we recreated the same self-portrait. So we had some great times. Before she was on hospice, when she was doing chemo and radiation, a big chunk of hair fell out. She wanted to cut off the rest of her hair and dye it purple. I said, let’s do it! So we did. She had this punk rock, dark purple hair, and she just loved it. So we found a lot of joy. But yes, the guilt of joy was there. It was mostly when my Mom couldn’t be involved in my children’s activities when the kids would have a chorus concert or something like that, where my Mom was always really involved before her diagnosis.  

Did you ever find yourself censoring that around your Mom? Did you feel like if you said, Oh, Mom, the kids are doing a play today; we can’t wait to go! Were you worried that would make her feel isolated or alone since she couldn’t be involved? Would you censor yourself, or would you share the good moments with her as well?

I shared the good moments with her. I think she wanted to know. She was truly the matriarch of our family. Before she got really sick, she made us all come together and swear that we would stick together. She just wanted to ensure that we would still be a closely bonded family. So I would share the things with her. I showed her pictures, and she loved them. But we are not the same close-knit family. We did not make good on that promise. 

Did another matriarch appear, or is that just a void now?

It’s a void. But I think my sister tries. My brother is so wildly different from us; his wife is not kind. And it’s difficult. I will not go to their house because of things she said. For instance, my husband is trans, and my sister-in-law is super transphobic and says horrible things. So I won’t go to their house, but my Dad always wants us all to get together for the holidays. I’m not going there, and they’re not coming here. 

The minute my Mom died, my sister-in-law posted it on Facebook before my kids knew! That’s how the rest of our family found out. That’s how our friends found out. I’m still mad about it. It’s been seven years. I’m still mad. 

It’s a very sacred time for the person passing, the caregivers, and the immediate family. For someone to involve whoever is on Facebook before you can process it feels like a violation. 

That’s exactly how I felt. It felt like a violation.

In what ways did losing the opportunity to process it before engaging others affect you?

Well, the whole day, we knew it was coming. My sister and I called the family to tell them Mom was getting close. She wasn’t responding to us. She was just getting close. We decided that we wanted everyone to be there. It was me, my husband at the time, who is now my ex-husband, but he was also wonderful during the whole time that my Mom was dying. He helped take care of her. So it was us, my sister, her husband did not come, my Dad, my brother, and his wife, and then they brought all of their four young kid, which was fine. I think children living among the dying is great. They were great up until the point when they got bored and started acting up. Her response was spanking them, which turned into this whole thing. So, my sister is one of the kindest people that I have ever met in my life. If something needs to be said, she can say it most gently. She’s so good at it. She asked my brother to come outside and talk and asked him if the kids could maybe go to my house to be with my kids because the environment was getting tense. He then took his wife outside to talk about it. She had a complete temper tantrum. She told my sister what a horrible person she was and how entitled she was. Just saying awful things. She said, my kids are not welcome here, and then she started yelling and screaming while my Mom was dying. Finally, she did agree. She took the kids to hang out with my kids. My children were in their late teens to about five years old. They all just hung out together. Then my sister-in-law came back, but she was mad the whole rest of the day. So that’s how it started. 

Then things just settled down into an uncomfortable peace. But my sister and I were really able to just be with our Mom while she was in her last hours. 

Then it got late, and my Dad was watching TV, which my sister took exception to. She told me I don’t want the TV on; this is a sacred time. But it was my Dad. So we just let him do his thing. 

When my Mom was actually taking her last breaths, my sister saw it first and said there she goes. I looked at my Mom with fresh eyes. And I could see, Oh, she’s right. I told my Dad that Mom was really close. He came over, and he held her hand. She took a couple more spaced-out breaths. Then, on her last breath, it was really beautiful. She took it. And then she just relaxed in such a way, with just a tiny smile. We watched her go. It was just such a beautiful moment.

My sister went over to my Mom’s wine, which she wouldn’t drink anymore because it tasted bad. She poured everybody a glass of wine. I suggested we go outside. So we went outside, toasted my Mom, and we all dumped a little bit on the ground. It was this really beautiful family moment. 

We eventually called the funeral home. They said they could come immediately or in the morning. They left it up to us, so we told them to come in the morning. We just stayed with my Mom. Then, during that period, I got on Facebook just to scroll for a little bit. That’s when I saw my sister-in-law’s post. I showed my sister. The post just took something sacred and tarnished it. That’s a spiritual moment. It’s not a Facebook moment. 

I still hold a grudge about it because there were reactions and people saying I’m so sorry by the time I saw it. I didn’t even have a chance to call anybody to talk to them like a human. I’m so upset because she took the humanity out of it.

Oh, I’m so sorry. I can’t imagine how that felt. 

And I’m doubly offended because she’s also a nurse. How can you be a nurse and just lack so much basic humanity? 

It would be one thing if it was her Mom, and she wanted to do that. But for her to force that on you guys sounds like it’s still a pretty deep wound. 

Yeah, I didn’t even have a minute to process. I knew we all knew this was coming and going to happen. But at the moment, nothing prepares you for the moment. You can know it’s coming all day, but that doesn’t mean you’re prepared. 

Yes, there’s a difference between intellectually and emotionally prepared. You know what will happen, but that doesn’t mean your heart isn’t devastated when it does. 

Yes. Yes. My heart continues to be devastated by it. Still, even to this day, I’ll be out shopping, and I’ll think, oh my gosh, I got to tell Mom, or Mom would like this. It still happens. 

She was a central figure in your life, and you spend your life with a person on your mind, or you’re able to be in their presence at any time your whole life, then suddenly, they’re gone. Is there anything that makes you smile when you think oh gosh? I wish Mom was here for that.

Yes, and also, her Facebook is still open, so every once in a while, I message her something like, Mom, I hope you’re having a great afterlife. I heard this thing today and wanted to tell you about it. Hope you check your Facebook in heaven. I’m kind of a goofball about it sometimes. 

Your sense of humor is still intact when it comes to your Mom. That’s awesome. Humor is almost like a salve to nurse those wounds.

Absolutely, yes, and I rely heavily on it. I can find it in just about everything. If there’s a terrible joke to be made, I’ll make it. 

Gallows humor can be comforting. It helps you rise above the pain of it all for a brief moment. As far as taking care of her physically and being there with her, did that get easier or harder as it progressed? Did you fall into any sort of comfortable role? Or was it always just this resistance to this thing looming over your head? 

Things that were hard for her always were hard for me. She couldn’t talk, so she couldn’t tell us what she needed. For instance, she didn’t want us cleaning up her bowel movement. She would hold it for a long time. And my sister finally said put her up in the lift. And put the bedpan underneath her. Because then she can’t hold it. My Mom would scream and cry the whole time. That never got easier. Things that were hard for her were hard for me. Things like turning and bathing her got easier, but I think she was more accepting of that part. She didn’t fight that, and she didn’t get upset. 

The only thing she would never let me do was brush her teeth. Even though she did a terrible job, she still wanted to do it. So I put the toothbrush in her hand and helped her hold it. That was hard. It brought home that this is real, this small thing, the toothbrush. I have to hold her hand so she can hold her toothbrush.

It wasn’t hard or easy, but it had this depth of feeling in it. This is real. I can’t undo this. I can’t make this better. I guess that’s where a lot of acceptance came for me.

Did you have any rituals you did with or for her that reinforced the sacredness of the dying time? Like put on music or special smells she liked or anything like that or prayed with her? 

We did sillier stuff, I guess. We would paint her nails and toenails. We would do a spa day. But as far as rituals, I didn’t know there were things like that to do. We could have used the death doula, for sure. 

Do you think a doula would have helped with that? 

I so wish that I had known about death doulas. I think we tried to put much of that sort of responsibility on hospice. We thought they could tell us what to do when someone is dying. But they didn’t. And I’m not faulting hospice in any way. It’s just that here, hospice is spread so thin that they can’t give people the necessary time. They just have so many patients. They have three counties, and they are socioeconomically poor in this area. I think hospice, even though it’s a great resource, just didn’t have resources themselves. And I’d never even heard of a death doula until years after my Mom passed away. I wish we had, though; I wish we made a little altar of important things for her and put it where she could see it. She had her pictures around her, but like little mementos that maybe we had in our homes that were important. My niece got her a tiny teddy bear, and my Mom loved that thing. That was always with her. It was one of the last words she could say, and she named him Wambly. I don’t know where that name came from, but it was his name. When she was cremated, Wambly went with her. So his ashes are with her, and that gives me joy and comfort. Her favorite blanket is in her ashes as well. 

Oh, I love that. What a thoughtful send-off. This one might be hard, so just let me know, and we can skip it. Are there any regrets that have turned into lessons that, if another loved one has a journey similar to your Mom’s, are now in your tool belt? 

Something that I wish that we had done with my Mom is talk to her about her end of life, about how she wanted it to go. We didn’t have a vigil plan. I don’t know what her wishes would have been if we had talked about it. Would she have wanted the TV on, or would she have wanted music and candles? You know, I don’t know. I would change that. If my Dad doesn’t die suddenly, that’s a conversation I want to have. Will he want the whole family around or one person? I think my Mom wanted the family around, but I don’t know if my Dad does. There’s just a sense that I got it from my Mom, but I never actually asked her. That’s my biggest regret about it, that I would change. 

So, would having hard conversations be something that you would advise anybody going through a similar situation?

Yes, we didn’t ask my Mom if she wanted to do a legacy project. With the way that she loved talking to people I think that she might have wanted to like write letters before she lost that ability. I would probably ask my Dad if he would want a legacy project.

How were you able to balance your life and your needs, emotional and otherwise, with being a caregiver for your Mom?

I didn’t do much for myself while taking care of my Mom. But I did one thing: I would still go to the Y and do my Zumba class. That was really cathartic to just get out there, sweat, listen to music, and not think about anything except how I was supposed to go. When you are concentrating on trying to keep up and make those moves, you don’t have a space in your brain to think and wonder how Mom is doing. I needed it because even like taking a shower, it was as fast as I can because I gotta go. Like making kid’s lunches, everything was just going so fast. Then I would be with my Mom, and everything slowed down when it was just us. I did get a lot of reading done. I think that was probably a good part of my self-care, being able to just take a break from it. 

Is there anything you do to memorialize her death date, birthday, or some other special time? 

Yes, my Dad took her ashes to Alaska because they had a bucket list trip, and my Mom couldn’t ever go because she got sick, and there was just never a good time between her treatments, or she would deteriorate in some way. It was really important to them. When she first started seeing Dr. Fensterbauer, they knew visiting Alaska was something important to them. They were going to do this first. But then there were just always too many “We have to do this first,” So my Dad took her ashes to Alaska and left them there. So I miss I don’t have a place to go to feel like she’s there. My Dad sold their house, and he moved. He couldn’t be there anymore. 

My Mom was a huge gardener. So I have a garden that I buy new plants for her every year. There are blueberries and blackberries and flowers. Her birthday is April 29th, which is perfect for planting. So that’s what I do on her birthday. I buy her another plant.

Do you have anything you have chosen to be like a sign or a symbol? Some people say whenever a cardinal comes to me, I know that’s Mom because she loved Cardinals. Do you have anything like that? 

I don’t really. I usually talk to my Mom in the kitchen because that’s where she always was. You were not gonna leave her house hungry. And she was gonna make it from scratch. I have a cookbook she wrote, and I use it often. There are typos in it, and some of them are just fantastic. One of them says to put a cup of salt in something. Whenever I encounter something like that, I just talk to her like she’s just standing there with me. But I don’t have a sign that I feel is from her. But I think she is around and can point me in the right direction when I have questions. 

I’m glad you have that. It has been amazing talking with you. I appreciate your willingness to do this, your vulnerability, and your willingness to talk about such a sacred time with someone you loved and were so close with. 

Well, thank you for doing this work and for listening. It was a lot of emotional work, but I enjoyed it.


This conversation reminds me that the human spirit is so full and so interesting. Even during the hardest of times, one can find glimmers of hope or even humor. While in so much devastation and so much pain, we’re somehow able to pick back up and do it all again tomorrow. The strength of the human connection transcends death. We are always going to feel connected to the departed, and there’s beauty in that. 

Celebration of Life: Part 2

In the face of loss, traditional funeral services may not always capture the essence of a departed loved one’s spirit and unique personality. When embracing creativity, innovation, and individuality, the following suggested celebrations offer a departure from somber rituals, inviting friends and family to commemorate the joys, passions, and cherished memories of the deceased in truly unique and meaningful ways. Exploring novel approaches to celebrating life not only honors the legacy of the departed but also brings comfort, healing, and a sense of connection to those left behind.

Memory Mosaic

Create a mosaic using photographs, mementos, and personal items representing different aspects of the departed’s life. Invite friends and family to contribute their pieces to the mosaic during the celebration of life event. As the mosaic takes shape, it serves as a visual representation of the person’s unique journey and the collective memories shared by those who knew them.

Interactive Digital Memorial

Create an interactive digital memorial that celebrates the life of your love loved one dynamically and engagingly. This could be a multimedia presentation featuring videos, audio recordings, and digital artwork showcasing the person’s life, passions, and accomplishments. Invite attendees to explore the memorial at their own pace, interact with the content, and contribute their memories and messages. This modernized approach to celebrating life allows for creativity, personalization, and participation from a diverse range of people, regardless of geographical location.

Memory Scavenger Hunt

Organize a memory scavenger hunt in a meaningful location that holds significance to the individual. Create a list of clues or prompts that lead participants to different spots associated with essential moments or memories in the person’s life. Along the way, encourage participants to share stories, anecdotes, or reflections about each location or memory. As they navigate the scavenger hunt, participants not only engage in a fun and interactive activity but also have the opportunity to reminisce and celebrate the person’s unique impact on their lives. At the end of the scavenger hunt, gather together to share a meal or host a picnic, allowing everyone to continue sharing stories and memories in a relaxed and communal setting. This unconventional approach to celebrating life encourages active participation and fosters a sense of connection and shared experience among attendees.

Celebration of Life: Part One