We're Failing Families

Are We Failing Families At The End Of Life?

Of course we are failing families at the end of life!!

Death and dying are treated as medical events rather than holistic ones! Conversations around the emotional and spiritual aspects of dying and death are completely shut down, circumvented or worse totally dismissed!

In the past few weeks I have received messages from people who are completely alone in their journey. Here’s just one:

“I was told that they were very sorry but there was nothing they could do to help me and that I had less than 2 months to live. I was at that appointment by myself (well, I had my service dog who is always with me) and, having just been told that, the appointment ended and that was that. I was considered to be in such bad shape that nothing could extend my life even 2 more months so there was to be no further contact although the radiation oncologist gave me radiation to the bone marrow site to help with the severe pain. My closes family is 600 miles away so there you go, I was on my own.”

Most of us can’t even imagine how that would feel! Was she even able to process all the options presented to her at that meeting? Were there options presented at that meeting? She didn’t seem to remember so.

I offer an alternative solution as a Holistic Support Specialist, a concierge service. Available to be there at time of diagnosis or poor prognosis and able to follow along at the direction of the patient, for as long as desired. Doctors can hire me to be at these initial appointments and then patients can choose to have just that one contact, or to continue a relationship.

The last phase of life (beginning at age 60 or upon receiving a life-limiting diagnosis) brings the realization of our mortality. The generation currently entering this last phase is unlike any before with more having never married or remained single after divorce or death of spouse. They are also the first generation of DINKs (double income no kids). They also have opted for more solo spiritual paths rather than organized religious paths, thus leaving them without possible spiritual support and guidance during this time. They are also the first generation to have moved across country for work, leaving behind the family support system.

This means that those facing their mortality and their caregivers are potentially doing it alone in many ways. We can’t wait until death is imminent to implement an action plan.

If you or anyone you know has a connection in a doctor’s office or an organization that would be willing to sit down and carve out new solutions to this problem with me I am more than open and willing!

The Story Of Hope

I come into people’s lives at times when hope is challenged. I hear phrases such as, “we aren’t giving up hope”, “there’s no hope” and “it’s hopeless”. Individuals often describe feeling hopeless as well.

Hope is not a feeling.

It is something you feel yes, but in and of itself, hope is not a feeling. Think of it like ‘wet’; You can feel wet, but wet is not a feeling.

Hope is a process.

Isabelle found a lump in her breast one day while taking a shower. She noted it, felt a little concern and decided to monitor it before mentioning it to her doctor. She hoped it was nothing.

A couple months go by and Isabelle feels the lump has gotten bigger and seems to be more painful than previously. She makes a doctor’s appointment and hopes it’s nothing.

Her doctor feels it warrants further examination so sends Isabelle for a mammogram. Her doctor and Isabelle hope it’s nothing.

The mammogram indicates need for a biopsy. The doctor and Isabelle hope it’s nothing.

The biopsy comes back malignant. The doctor recommends a lumpectomy and a biopsy of the lymph nodes to determine the extent of the condition. The doctor and Isabelle hope there is nothing found in the lymph nodes and that the lump is removed successfully.

The lymph node biopsy comes back positive for cancer cells. The doctor recommends a radical mastectomy and chemotherapy. The doctor and Isabelle hope this will stop the progression of the disease.

After months of treatment the cancer has spread very aggressively throughout her body. Further aggressive treatments would deplete Isabelle’s quality of life with no likelihood of a cure. Isabelle foregoes aggressive treatment and hopes to fill the rest of her life with quality family time and be comfortable.

Surrounded by her family and friends daily, Isabelle hopes that she has enough time on Earth to leave no words unspoken, no amends not made and no doubt how much she loved life. She wrote letters to be read after her death to special individuals and hopes each one brings a sense of peace and closure to the recipient. She hopes that she made a difference in the lives of those she loves and she hopes that continues on in them long after she transitions to the next place.

Isabelle’s family and friends hope they have enough time to give back to Isabelle all that she has given to them over the years. They hope that she feels loved during the Living Wake they held for her. They hope that she knows she is not alone. They hope that she is not in pain. They hope that they will see her again some day, in some way. They hope.

Hope takes many shapes depending on the evolution of the situation. It morphs and transforms at the direction of its beholder. It relies heavily on perception and mindset. It is undeniably fluid.

Hope is ever present and can be felt by proxy. If you can’t feel it someone else can feel it for you. It is often thought of as contagious for this reason. The mere action another holding hope for you and your situation, can help you feel hope too.

Hope is not tangible. Hope is not concrete. Hope is organic and cannot be defined. It is a dance that cannot be choreographed by a few well spoken words. Hope comes from your soul.

You are either one to experience it or not. In my experience those with hope are more positive, finding all reason to hope despite the situation. Also, in my experience however, I find denial disguised as hope.

Denial is often portrayed as ‘positive thinking’. Denial is the underlying belief that if I ignore something it will not come into being. Denial is considering only the best case scenarios and suppressing the fears of the possibility of an undesired outcome.

Denial isolates and divides, but true hope unites and bonds.

Hope is not holding onto a desired outcome no matter what. True hope is holding the desire for the best outcome in one hand, while holding acceptance of the possibility of the worst outcome in the other – and preparing for both.

It is in this preparation for both that the uniting and the bonding happens.

When I consider things, I always play the what if I’m wrong? game. “If I do this thing and I’m wrong then (fill in the blank)?” And then I weigh it against “what if I do that thing and I’m wrong then (fill in the blank)?”

So, let’s play that game now.

Imagine a situation where you have been diagnosed as terminal and never consider the possibility of death because you are being ‘positive’. You never have conversations about it with others. You never express the things on your heart. You never talk about your fears. You never express your wishes regarding your services. You never make preparations.

You think about dying. You worry about it. You have no one to talk about it with though because you are being positive about it. You lie in bed at night and think of all the things that you will miss. You feel great love but do not express it because it will scare your family to think you are giving up.

At some point the treatment is deemed ineffective, causes severe side effects and reduces your quality of life. You have no energy to visit with others. Treatment is stopped and you are sent home with hospice.

You die three days later with no chance to say a quality goodbye.

How does that feel?

Now imagine a situation where you have been diagnosed as terminal and pursue aggressive treatment while also accepting the possibility of death. As you go through treatment you have open deep conversations with family and friends about your fears and your hopes. You begin to make decisions about the celebration of your life. You make a list of songs for your memorial service, last wishes about care and you even write a letter to be read at your service.

You cry and laugh with your loved ones. The whole experience draws you closer to your family and friends.

Your aggressive treatment is successful and you live several more years with these deeper relationships.

How do you feel?

Which scenario feels more hopeful now?

Carol

Holistic Support In Uncertain Times

Carol was the neighborhood mom of my adolescence. Carol’s daughter, Marsha, and my younger sister were the best of friends. While in our youth we were not allies, as we grew into adulthood we grew closer.

I had peripherally understood that Carol had battled a few different types of cancer throughout her life. It’s unfair really, that anyone would have to face multiple cancer fights, but she was known as a fighter. Even in our youth, her warrior spirit was recognizable.

But there comes a day in every warrior’s life when the sword and shield get heavy and it is time to lay them down.

Carol was at peace with her decision to forego aggressive treatments. She was tired and just wanted to BE: BE with her family, BE in her home and to BE with her God.

Carol was at home with hospice care and as so often is the case of only daughters, Marsha was the caregiver of record.

Upon my arrival I found the energy of the house to be chaotic. This is not surprising as our society has created an atmosphere that treats death as a medical event, rather than a holistic experience. Often an individual internally senses when it is time to let go and accepts this new phase of their journey, but in an effort to ‘stay positive’ the family can pressure the patient to ‘not give up’. This fear-based disparity creates a chaotic energy in the environment.

Acceptance is a very different energy than giving up. Giving up is premature disengagement usually stemming from depression. Acceptance is completely different. Acceptance is no longer fighting against the tide, it is allowing peace to take the place of fear and standing in the love of those surrounding you. Acceptance transforms the scared energy into sacred energy.

Carol was in acceptance. Her daughter was in acceptance. The rest of the family, maybe not so much.

Acceptance became our first goal so sacred things could start to happen.

Families need permission to be ok with a patient’s decision. A simple “It’s ok” from someone with experience often opens up a floodgate of relief from self-imposed criticism.

I observed the family as it operated organically. I saw who was comfortable providing what, supported their strengths and nurtured their perceived weaknesses. I could identify small but significant shifts to facilitate the transition from crisis energy to sacred energy.

Once that happened, peace replaced the panic.

I watched as Marsha used the therapeutic ritual techniques I’d suggested to provide holistic support to her mother. Therapeutic ritual techniques not only provides practical emotional and spiritual comfort to the individual, but it also offers an outlet for the underlying helplessness caregivers experience while caring for a dying loved one.

I never orchestrate anything when I am providing holistic support. I aim to be non-invasive and wait for organic opportunities to facilitate sacred moments. When I was alone with Carol I offered spiritual and emotional support and encouragement. When I was alone with family members I listened to their deepest fear revealed and spoke to that.

You can’t know from one moment to the next what will be of significance so I am always looking for signs. While her son was catching me up on his life, I noticed a change in Carol’s face. I knew she was looking through the veil to the other side. She smiled, sighed and said ‘Ooohhh’. I encouraged her to share her vision. She said she saw so many colors. All kinds of colors. Colors she had never before seen. When I asked her what it felt like she said ‘Joy. It feels like joy.’

I saw the glow of her vision reflected on her face.

Carol died surrounded by her closest family members just three days later.

Providing holistic support to those facing a life limiting prognosis whether due to aging, trauma or disease is the greatest honor of my life. I understand the complicated struggle that happens along the journey between life and death. I am comfortable having the uncomfortable conversations and holding space so that families and individuals can find their own path, create their own memories and feel empowered in their own experience.

My greatest wish is to support more individuals and families in shifting from scared to sacred.

Judith Klemos BSW, CTTP, ULC Minister
Healing Rites of Passage
http://www.willowsongmedicine.wordpress.com
219 488 6176

Heart Break

I support people who are facing their end stage of life and their families.

What does that mean exactly?

It means I provide non-medical services to 1) individuals diagnosed with a life-limiting/altering disease, disorder or condition; 2) individuals who have received a terminal prognosis; 3) individuals age 60 or over; 4) individuals who have had a medical scare; 5) individuals who have suffered a traumatic injury/event; 6) any individual who understands the importance of planning ahead.

Often I am told that my work must be heartbreaking.

I do get my heart broken often, but it is not the work I do that breaks my heart…it is the work I don’t get to do that breaks my heart.

For instance, a social media friend posted this recently and my heart shattered into a million pieces…

“So I find myself speechless, an animal unheard of…my father is now on comfort care, unexpected to live past the weekend. Who prepares you for such a calamity of events? Who prepares you for a hostile mother, wickedness and (un)comfortable in her environment. I’m not prepared, is anyone?”

This was the Friday after Christmas and he died early Monday morning. 

The truth is we can be prepared. I help people be prepared. You will never be ready, but you can actually be prepared

The thing is though you can’t wait until you see it coming. 

The words of this social media post belong to a 65 year registered nurse who had a long career at a well respected hospital and who graduated from law school last year.

She was sure she’d see it coming. 

She is not the average human being. She is highly intelligent, well educated and has intense medical knowledge.

But she didn’t see it coming.

What chance do the rest of us have to see it coming?

I had another conversation with a person who had done all sorts of pre-planning with her 85 year old mother. Very involved and very thorough and yet she was surprised at how quickly her mother died after moving into a foster home. And at 2:00 am she was caught off guard by the call to contact the funeral home they hadn’t even chosen yet because it just fell through the cracks.

I had another conversation with a son who asked, ‘Why didn’t anyone tell us six months ago that this was the beginning of the end for my 81 year old mother? We would’ve made different choices.’

I can’t tell you why the medical community is having such a hard time communicating with the families of those who are in the end stage of life. I can guess, theorize, speculate and ponder but the truth is there is no ONE reason.

There is a culture in our entire society that death will not happen to us. There is an underlying message from the pharmaceutical and medical communities that death is something we can beat with a pill or a treatment unless it is ‘God’s will’. There is a negativity factor assigned to anyone who dares to discuss death as a possibility. There is a label of morbid assigned to anyone who wants to discuss death when it is not imminent. There is a denial that runs like the famed river throughout our culture as a whole.

No one is comfortable taking away hope, yet hope remains always! Hope for a cure may be extinguished, however hope for peace, for comfort, for transcendent experiences, for genuine moments that create lasting memories, for loving kindness, for deep spiritual bonding and for living life to the fullest to the last moment always remain!

Watching people live a life in denial of inevitable death is what is heart breaking for me.

I’ve seen death. Lots of death.

I’ve seen death ignored and shunned and disenfranchised. The results being tortured isolation and devastating loneliness. The bereaved often filled with regret and second guess all decisions.

I’ve seen death embraced and celebrated and unfettered. The results are life affirming and inspiring. The bereaved are filled with peace and no regrets.

Think about this. What would bring the most regret? Living many years despite having conversations about the possibility of death, creating legacy projects and sharing intimate moments? Or dying without talking openly about the possibility of death, not creating legacy projects and not sharing intimate thoughts with the pretense of ‘remaining positive’?

If you answer yes to any of the following questions, then it is appropriate to start emotional estate planning.

  • Have you lost one or both of your parents?
  • Have you, or anyone you love, had a life-threatening medical scare?
  • Have you had a partner die?
  • Have you, or anyone you love, received a life-limiting diagnosis?
  • Have you, or anyone you love, experienced a decline in health in the past five years?
  • Do you have a family?
  • Do you have children?
  • Have you experienced the sudden loss of someone dear to you and were left with the feeling of “I wish I had one more day with them”?
  • Have you had conversations about your wishes for medical interventions or post-mortem services but haven’t documented it?
  • Did you answer no to all of the above?

If you answered yes to any of the above -including #10, it wasn’t a trick question- then it’s appropriate to schedule an Initial Inventory Planning Session with an experienced guide.

The session is 90 minutes long and includes a copy of LIFE’S Book: Healing Rites of Passage End of Life Planner, that has everything you will need to easily create, update and maintain your emotional estate planning.

We even work nationally and internationally with the help of video. Upon receipt of payment we will send your book and conduct a video session after you receive it.

Employee End of Life Benefits

In my 30 year career I have worked several places and not one employer had what I call sufficient support for those who were bereaved. Not even the hospices.

Three days of paid leave and maybe some flowers. That’s usually the sum total of support an employer lends to an employee after they experience the death of a loved one. There is of course, FMLA but that just protects your job to some extent, it is not truly support. It’s also mandated by law. Sometimes, individual employers will extend additional emotional support by offering some workplace flexibility when an employee is taking care of an aging or ill loved one, but it isn’t status quo across the board.

Our aging boomers have caregiving children in the work force. Many have to give up their jobs in order to take care of their parent. While employers are not required to do more, I think they could.

I am exploring a new benefit and am looking for emplyers who would be adventurous and caring enough to join me in providing a non-traditional benefit to their employees.

End of Life Specialist Benefits

In addition to the traditional three day paid bereavement leave and flowers, I suggest employers consider end of life specialist services in addition to traditional EAP. As an end of life specialist I provide services including but not limited to:

  • advanced directive planning
  • emotional estate planning
  • bedside support
  • healing bedside rituals
  • education on the end of life process
  • assistance and emotional support navigating the medical community
  • facilitate support groups
  • bereavement support follow along
  • support for anticipatory grief
  • grief counseling
  • legacy projects
  • facilitate educational and interactive seminars
  • mediate/facilitate difficult family conversations
  • provide grief support to co-workers after a employee death

A one year contract specifically designed for your company and your employees can include all or some of these services. In an age where the topic of death is taboo and the event often spirited away behind the walls of medical institutions there is a new age dawning. I am part of that new age, providing support when it matters most. I have a lifetime career of experience that has proven time and time again to benefit in the simplest ways resulting in profound shifts regards coping and healing related to the end of life stage.

As a business owner you must realize the impact that illness, dying and death have on your caregiving and bereaved employees. You must also realize that this impacts the quality of work they can provide you during this time. Having your human resource amply supported during times of caregiving and bereavement prevents depression, job loss, production decline, grave errors in judgment, apathy as well as reducing absenteeism.

I hope I do not have to outline all the benefits to your bottom line that such a non-traditional benefit would provide. Just look at how non-traditional benefits have impacted the bottom line of companies such as Google and Amazon!! Non-traditional benefits decrease turnover rates, increase morale, decrease on-boarding costs, increase productivity, increase creativity and encourage unity and loyalty just to name a few.

But really, all other benefits aside, its the right thing to do for those who have chosen you as their employer. With this non-traditional benefit you make a difference at a time when no one else knows how to. We each only have one death in this life. There are no do overs and I meet people everyday who have profound regrets surrounding the death of someone they’ve lost. It doesn’t have to be that way. The loss of a loved one hurts, we can’t change that. We can however, change the circumstances in which it happens and provide more support to those in need.

I’d love your feedback to this non-traditional benefit whether you are an employee or an employer. I welcome all conversations. Please share your thoughts on how you think this benefit would impact you as an employee or an employer.

Thank you.

The Importance of Emotional Estate Planning

True or False?

“I’m not sick. I have plenty of time to do my emotional estate planning.”

False.

While it is never too late to start emotional estate planning, it is also never too early.

Emotional estate planning should not be reserved for those suffering a terminal or chronic illness who are nearing death.

Just think back on the deaths you have experienced. How many were unexpected or were the result of a rapid decline in health?

As I reflect back on the many deaths of family and friends over my lifetime not one of them did much, if any, emotional estate planning and with the exception of my grandmother and aunt, all were rather swift and unexpected deaths.

My father succumbed to a brain aneurysm at age 46. My uncle, to an aortic aneurysm, also in his 40s. My aunt died in a car crash in her 30s. My mother died over the course of one week at the age of 74 of chemotherapy poisoning, just six months after a breast cancer diagnosis. My friend’s husband died almost instantly of a heart attack in his 50s. My friend died just a few months after a diagnosis of ovarian cancer in her 40s. My ex-husband, a non-smoker, died at age 56, six months after being diagnosed with lung cancer. While he underwent chemotherapy he developed a rare secondary cancer that spread to his brain.

This is just a sample taken from my own life, but out of eleven deaths only three were a natural result of a long well lived life. Not much time or opportunity for getting affairs in order, much less for crafting last words, goodbyes or making last memories in the last month of their lives.

My mother and my godmother were the only ones who really did any emotional estate planning and that wasn’t all that much, honestly.

My goal is to prevent as much emotional, spiritual and suffering as possible. I know how much suffering emotional estate planning can relieve. Unfortunately, most people still believe they will ‘know’ when their time is ‘about to come’ and have time to prepare.

Here’s something no one seems to remember to mention…

When you’ve received a diagnosis with a terminal prognosis, the life expectancy they give you is not a guarantee.

A prognosis is not a contract.

We’ve all heard those wonderful stories of someone being given six months to live and they went on for another five years. Those are exceptional. Emphasis on ‘exception’. The stories that are not passed along but much more common, are the ones who are given three months and only get three days.

Most importantly though, life expectancy and prognosis refers only to the state of being physically alive. It does not indicate the quality of that life. For instance, one may be given six months to live, however the last two months may be in an altered cognitive state at best, and unresponsive at worst.

The benefit of emotional estate planning is the opportunity to provide your emotional support to your loved ones before, during and even after you’re death.

How many times have you said ‘I wish I had one more…’, after you’ve lost a loved one? One more story. One more “I love you.” One more something? Emotional estate planning enables you the opportunity to set up these sorts of bonus ‘one mores’ by prompting you to make choices, take action and express yourself.

There is so much benefit to your bereaved when you do emotional estate planning, however you are the one who benefits the most!

By accepting our mortality, before it is knocking on our door, we can deepen our experiences of life, gain perspective and even change the trajectory of our lives. We gain insights not otherwise available to us when we are living in denial.

It puts things into perspective and offers us the opportunity to forgive, make amends and even repair damaged relationships. More importantly, it enhances relationships that are already awesome by strengthening our bonds in sharing profound thoughts and fears.

Taking the opportunity at any age to acknowledge death as a constant companion only brings more depth to our living. As we age however, emotional estate planning becomes increasingly necessary because death falls more into our direct line of sight rather than in our peripheral vision.

Ok, great, you now understand how important it is to do emotional estate planning, so now what?

You could begin by scouring the internet for end of life planners.

Some resources are simply books of checklists and blank lines to record where a document can be found. Others have thought provoking topics to reflect on.

A checklist is fine for grocery shopping. It’s great a tool for not overlooking something. Thought provoking topics are better. They prompt you to dig deeper than the checklist so that you are more prepared emotionally than if you simply filled out a checklist.

What neither of them have though is the availability to support you in processing the emotions that come up when you are doing this kind of planning.

And the feels are real, my friends.

There are feelings of failure, disappointment, worry and fear just to name a few. There are also feelings of overwhelming gratitude, appreciation and love. What do you do with all that? How do you process it and not allow it to overpower you? How do you transform those feelings into actions and gifts that will ease the grief of you and your loved ones?

By doing it with an experienced guide.

Initial Inventory Planning Session

90 mins.

That’s all it takes to get a good portion of the basics of the necessary planning completed. Included is your copy of the Healing Rites of Passage End of Life Planner. This planner is not available anywhere else.

The session will quickly identify where you are lacking in legal, financial, social, medical and emotional preparation as well as facilitate and complete some parts of your plan.

The session serves two purposes: 1) To get the basics of emotional estate planning completed. That’s self explanatory. At the end of the 90 mins you will have your advanced directives outlined at the very least.

At most you will have had a deep conversation outlining exactly your intentions for the end of your life care, whenever it should happen to be. You will have laid the first steps to making your family’s job of memorial planning easier.

…and the second goal…

2) To build a relationship with your end of life specialist. This is less obvious. When you build a relationship with an end of life specialist by initiating your emotional estate planning, that specialist becomes an intimate part of your life. That relationship can then be drawn upon down the road when you are in crisis. Because when you are in crisis you are automatically surrounded by professional strangers (or strange professionals, I suppose).

How about a familiar professional with all the experience necessary to help you sort out the jargon and double speak? How about a familiar professional who can remind you of the things that you decided were important when you weren’t under duress? How about a familiar professional who can remind you of those things to relieve your panic? How about a familiar professional who can ‘be the strong one’ while you and your family have that much needed break down?

It starts with 90 minutes, but lasts the rest of your life.

We Aren't Immortal

So I find myself speechless, an animal unheard of…my father is now on comfort care, unexpected to live past the weekend. Who prepares you for such a calamity of events? Who prepares you for a hostile mother, wickedness and comfortable in her environment. I’m not prepared, is anyone?”

This is an actual facebook post of an acquaintance of mine.

As I read it I felt my heart break a little. Yes, Virginia there is a Santa Claus and you can prepare for calamities like this. In fact, preparing for them often prevents them from becoming calamities. (You can prepare, you are just never ‘ready’.)


Let me let you in on something else….that acquaintance? She’s a registered nurse with a law degree. She’s is highly educated and works WITHIN the medical system!


We can’t keep living like we are immortal! The moment we are born we have a date with death. To see that perspective as ‘morbid’ is nothing more than denial at its finest.

Emotional Estate Planning is the forethought of emotional, psychological and spiritual preparation for your transition. Emotional Estate Planning ensures that you leave nothing ‘undone’ and that your loved ones feel supported during and after your passing.

If you answer yes to any of the following questions, then it is time to start emotional estate planning now.

  1. Have you lost one or both of your parents?
  2. Have you, or anyone you love, had a life-threatening medical scare?
  3. Have you had a partner die?
  4. Have you, or anyone you love, received a life-limiting diagnosis?
  5. Have you, or anyone you love, experienced a decline in health in the past five years?
  6. Do you have a family?
  7. Do you have children?
  8. Have you experienced the sudden loss of someone dear to you and were left with the feeling of “I wish I had one more day with them”?
  9. Have you had conversations about your wishes for medical interventions or post-mortem services but haven’t documented it?
  10. Did you answer no to all of the above?

If you answered yes to any of the above -including #10, it wasn’t a trick question- then it’s appropriate to schedule an Initial Inventory Planning Session with an experienced guide.

The session is 90 minutes long and includes a copy of LIFE’S Book: Healing Rites of Passage End of Life Planner, that has everything you will need to easily create, update and maintain your emotional estate planning.

We even work nationally and internationally with the help of video. Upon receipt of payment we will send your book and conduct a video session after you receive it.

The Power of Presence

It was a Monday, like any other Monday and I had a new patient to assess. Talking to the hospice nurse before I made my visit I learned that Violet had been admitted on Friday in stable condition was expected to be with us a few weeks. The nurse thought I would find her delightful. Violet lived in an extended care facility and had no local family.

I brought music cds and a player with me to all visits in extended care facilities. I find that quiet reflective music helps transform facility space into sacred space so that what needs to happen can happen.

When I arrived at Violet’s room I found a very different woman than the nurse described. She was not responding to my voice or my touch. Her face was pinched, grimacing and pale. She was restlessly picking at everything and her breathing was shallow.

I changed gears quickly as I realized that she was actively dying and I notified the nursing staff immediately of the change in condition…then I got to work.

I set up the music and rearranged some furniture in her space so that I could be closer to her. I provided some energy healing to promote physical and emotional comfort and then began to read to her in a soft voice.

I have a booklet of poems that I’ve written over the years about dying, death and grief. They seem to speak to matters deep within that the dying sometimes have a difficult time addressing.

As I read the poems and did the energy work, I saw Violet transform. Her face that was pinched, softened and had a glow to it. Her hands that were restless and picking were now resting calmly at her sides. Her breathing was shallow and slow. Her whole presence had shifted by the time I read the last poem.

I spoke to her with reassuring words of intuitive compassion and support, after which I sat silent and provided energetic support while the music played and she did her internal work.

Suddenly, Violet sat straight up with a smile on her face and outstretched her arms. Her eyes were open and she was definitely looking at someone as she wrapped her arms around her chest as if pulling them in for a hug.

She laid back down and a few short minutes later she took her last breath.

This experience was so inspiring to me that I wrote another poem to add to my booklet. The last line of which reads, “her last breath promising much more than her first.”

When I called to notify the hospice nurse she was completely surprised by this rapid transition.

Death is not just a medical event and we do a disservice when we treat it as such. I read recently that death is a ‘physical expression of a spiritual experience’ and I find that to be very accurate.

I often tell families that dying is holistic: mind, body and spirit. And that all three need to be on the same page to have a peaceful experience. Sometimes two can be on one page and the third be on another and death is prolonged in an agonizing fashion.

My experience with Constance was much different than with Violet. Constance was also admitted on a Friday but was not expected to live until Monday. Monday came though, and she was still with us. When I visited her she was alert, but not eating or speaking. She drank only sips of water through a straw.

The family thought she was waiting for the youngest child to come in from out of town. While everyone was talking about Constance’s death, no one was talking to her about it.

I encouraged the family to begin to share the things on their hearts related to their grief over the impending loss. This was quite difficult for most family members as they had a deep belief that it was morbid to “talk like that.”

I helped them find wording that fit into their belief system, but still allowed the sentiment to be shared. The youngest child did arrive from out of town , but to everyone’s surprise Constance held on.

In fact, Constance even woke up out of her unresponsive state, able to speak just a few words and answer questions with yes or no. This went on for a few weeks before Constance finally took her last breath one night while everyone was asleep.

What was it that finally allowed Constance to let go? We will never know, but I think that by speaking the words on their hearts, Constance received what she needed in order to transition at last.

I know I make a difference in the lives and deaths of those I touch. I don’t have a marketing plan or advertising copy. I just have my heart and my need to be of service. But somehow I need to share my stories so that those who need me know I am available.

What I do as an end of life specialist is not usual, customary, formulated or predictable. I can’t promise you anything other than authenticity and compassion to serve your highest good.

But I do promise to be there every step of the way.

When Death Comes – An End of Life Doula Perspective

Early on Life taught me that it had a set of bookends named Birth and Death. I was not afforded the luxury of death denial. I understood clearly that death was always part of the deal.

This perspective impacted my life in a deep soulful way. A way that made me seem odd in the eyes of my peers.


When I first heard the term, ‘End of Life Doula’ I thought, “this is what my whole life has been about.” Because death has had such a prominent place in my experience of life, I organically became the ‘death guru’ in both my personal and professional lives. Intuitively I understood what someone dying was seeking and what those who were grieving required. It isn’t something that can be taught, it must be lived through.

Death in our modern society is viewed as a medical opponent meant to be thwarted at all costs, yet the reality is that we all have two book ends. At some point we must come to acceptance that our time on Earth is finite and that treating death solely as a medical event, without proper attention to the spiritual and emotional needs, leads to regret and complicated grieving.

Because of my experiences I have learned how to walk with death while in the midst of living. I have discovered the sweetness this perspective brings to living and wish to bring it to others. This is why I suggest people begin looking at end of life issues as early as age 45 or with the first hint of a medical scare, rather than just when death seems imminent.

It is off-putting to some because our society has done such a good job of hiding death away in sterile environments and labeling any reflection as ‘morbid’ or ‘negative’. To the contrary, openly embracing the inevitability of death makes us appreciate life even more. We live deeper because we are not closing our eyes and lips in denial. When our eyes and lips are open, we place more value on our relationships and experiences and less on the pursuit of material gains.

The more we integrate discussions about dying preferences into medical treatment discussions the more informed each patient’s choices can be. Subsequently, the more discussions we have the less alone we feel.

This is not easy for most though and that is where I want to be of service. I want to be one to facilitate discussions, listen actively, offer inspiration and comfort in situations where others may not know how. To this end I have compiled my experience and education into an End of Life Planner that gives structure and direction through these waters. It serves as a guide for those who wish to explore their fears, preferences and beliefs around death and dying. I call this ’emotional estate planning’.

Through tragedies we are opened up to a new level of connection with others. Why wait until then, though? Why not open up to real connection talking about something so real and inevitable as death and our wishes around our care during that time?

When death comes we may never be ready, but that doesn’t mean we can’t be prepared.

When Death Comes
by Jade Klemos

When Death comes, it is not convenient, or better, or easy.
It doesn’t come with manners, etiquette or rules to follow.
It doesn’t come bringing a gold leafed invitation you can decline,
It comes with surgical steel precision dissecting your life.

Death may come in the quiet of night with a crash
It may come at high noon with a silent breath.
It may be welcomed like a soft bed of blankets after a long journey.
It may be as disagreeable as a bed of nails.

Death comes without explanation, justification or reason.
It comes without being fair, or just or reversible.
It comes without your permission, approval or acceptance.
It comes without an undo button or an option to refuse delivery.

When Death comes, it cares not what God you do or do not believe in;
Whether you went to temple, church, mosque or Sunday brunch.
It cares not what’s in your bank account, or on your to do list.
It certainly cares not whether you are ready.

When Grief comes, it comes ripping shreds of flesh from emotional bones
Filling them with marrow of sorrow.
It cares not how many birthdays you’ve had
Nor how many degrees hang on your wall.

Grief comes bringing unbelievable pain and intolerable numbness.
It comes bringing more questions than answers.
It may come as a gentle wave on the shore Or as a tidal wave tossing you under and over.

Grief comes without respect to place, or time or status.
It wreaks havoc with equilibrium and motivation.
It causes doubt, isolation and disorientation.
It is unilaterally deaf to desperate pleas for mercy.

When Grief comes, it comes without kindness or compassion.
It cares not that you are overflowing with it and unable to breathe.
It cares not that it brands epitaphs on your heart.
It cares only that it change you forever.

Death Is Imminent

When I try to explain how I can help with the last days or even with the grieving period, I get a little tongue tied. I don’t have a set formula or pat answers to any situation. What I have is intuition that leads me to suggest things to a particular person in a particular situation that remedies a particular suffering. Something I might never again suggest to anyone else.

Dying is the most intimate occasion of our lives.

People die the way they live, so while one may prefer to have every family member around their bed as they cross the threshold, another might prefer to slip quietly across in the middle of the night with no foreshadowing.

My gift is to listen to what is being said, and what isn’t being said, to see what is forthright and what is hidden, in order to offer alternatives that offer physical, emotional and spiritual comfort to each individual involved.

“What can you do for us?”

I can only answer that question one way; in a half hour face to face consultation where I ask a series of questions to ascertain what is most important to you at this time.

From those answers we could have a very good conversation about how I, as an end of life doula, could assist in your current situation.

When I tell people what I do, there are two reactions:

  • 1) “Wow. I wish we’d known about that when my loved one was dying.” Or…
  • 2) “Oh.”

I hate both those responses, the first one is about missed opportunities through lack of knowledge. You can’t know what you don’t know, right? But if you had only known you could’ve made a different choice.

The second one is equally disappointing because in that one word so much is conveyed…”I’m not comfortable with that topic.” It means, when the time comes they likely will not remember to call someone like me to help navigate the emotional waters.

But I’d rather hear those words than. . .

“We should’ve called you.”

I can do no more than offer my service and share a vision with you. You are the one who has to decide to push through the inherited societal discomfort around death to embrace a new way of doing things. I will never ‘sell you’ on my services. I won’t try to convince you that this is the best thing to do in your situation. I won’t do it. Do I think everyone can benefit…yes absolutely. There isn’t one single circumstance I can think of that wouldn’t.

Even if YOU are an end of life doula, you can benefit from an end of life doula!!!

But I won’t sell you on it. It will either resonate or it won’t. But please don’t ever come back to me and say ‘we should’ve…’

My heart can’t take it.

If dying is the most intimate experience of our lives, then grieving is its counterpart for those left behind.

It is truly never too late to call me. The death has occurred, the funeral or memorial service is over, and you find yourself ruminating over what you now think you should’ve done better or differently.

Not only can we explore some rituals to help you over this hump, we can also begin right now to prepare for your own death so that your loved ones will not have your same experience. We can start conversations, create your vision and get everyone on the same page…even if that page doesn’t get turned for many years to come.

Death is imminent for all of us, the only difference is that some of us realize it.