What The Lack Of End Of Life Planning Really Costs

I want to share a deeply personal story.

At the time of his death my daughter’s father and I had been divorced for four years.

During our 23 year marriage, because of my career, we always had open discussions about dying and death. We were open with our daughter about death, never shielding or protecting her, but instead arming her with coping tools and information.

Those conversations included directives regarding limited aggressive treatment, as well as life ceremonies and general care wishes. We had watched people fair poorly with chemotherapy and that was specifically something he had voiced against.

I had remarried, while at the time of diagnosis Allen remained single, but dating. We remained friends and much of my belongings remained in storage at the home we had once shared, including our daughter’s childhood memorabilia.

He was an avid ‘health nut’, so when he was diagnosed with stage 4 lung cancer in November of 2013 we were all stunned. Almost immediately he got engaged, with a projected date a year out.

He started chemotherapy treatment and began to decline swiftly. His fiancé kept his phone and isolated him from his family as much as she could, but needed the oldest daughter’s cooperation to sign for medical procedures when he was no longer able to due to the development of a rare secondary cancer of the spinal fluid that spread to his brain causing seizures and cognitive impairment.

My daughter was called to the hospital in April, 2016, because the outlook was not good. I ended up meeting her there the next day. We stayed a few days and had some good conversations with him despite his disorientation and intermittent incoherence. It was clear he was tired; like tired with a capital T. My daughter and step-daughter (who had been estranged most of her life) discussed their wishes for their father and decided on a plan of care, because it seemed as if his fiancé was not vested in his health, but his wealth.

Two hours after we left his eldest called to state that the fiance´ presented her with a family consent to marry. She called my daughter and they decided not to give consent. If their father had intended to marry, he would have done so urgently upon receiving a likely terminal diagnosis of stage 4 lung cancer. He would not have put it off for a year.

Apparently, however the eldest daughter was persuaded to give consent after receiving ‘assurance’ that a Will was made. She did not ask to see the Will, if she had she would’ve immediately recognized her father’s signature had been forged, badly.

In addition, to forging the Will, the woman obtained Power of Attorney during the same time period. She changed the beneficiary on his retirement accounts. She got a judge to marry them with the familial signed consent form. Lastly, four days before he died, while he was in a coma, she used her POA to add her name to the deed of his residence.

The memorial service was arranged with little to no input from the daughters. It was not at all representative of the man we knew. Calls and texts to the widow went unanswered. I was never able to retrieve my belongings or that of my daughter. My daughter was not given the opportunity to receive any of her father’s belongings and despite being named in the forged Will, did not receive anything, though her sister and her cousin did.

All of his belongings were reportedly sold or given to unnamed individuals, not family, including a car that he promised to our daughter.

Turns out you can do a lot of illegal things, including forging a will, and unless someone has money to contest it, you get away with it.

This widow lived off the insurance and pension for a year and in that year married someone else.

Granted this is an extreme case, colored by the shadiness of a true gold-digger, but it could have gone so differently had he completed an end of life plan ahead of time.

These are just some of the things he had control over at one point:

  • completing a Last Will And Testament when of sound mind
  • establishing Health Care Directives including Medical Power of Attorney and Living Will
  • creating emotional estate planning documents
  • complete an end of life plan
  • pre-planning Celebration of Life ceremony
  • completing legacy projects

Regarding end of life planning, many people take the position, “I have time” or “I don’t care, I’ll be dead.” It is important to note how our decisions, and especially our lack of decision making, can wreak havoc on our loved ones and complicate their grief.

To Tell, Or Not To Tell The Children, There’s No Question

It is our job as parents to protect, nurture, and guide our children into whole human beings. It is our responsibility to do this to the best of our ability. If we do it right, the parenting role will take us outside our comfort zone more often than it doesn’t. Sometimes stretching us into improved versions barely resembling the old.

We know it isn’t best to take the easy way out and give in to whining, or temper tantrums, or tears when enforcing bedtime, curfew, or homework. We establish house rules and expect there will be resistance in the teen through young adult years, while we live under the same roof. Still, we know that it is best not to give in just because they will be upset.

That same truth appears here – where we are talking about a parent’s terminal diagnosis or life-limiting illness.

Navigating the rocky terrain of life-limiting illness and terminal diagnosis is a challenge none of us fantasize about. Most don’t spend time thinking about how to handle such a situation in advance. There’s no play book, no manual, and certainly no instruction sheet for reference. When it comes to our kids, though, we have to get it right – and we only have one chance. What we give them during this time will shape who them become as adults.

“We’re Not Telling The Children”

If this is you, this your fear talking. You want to keep things as they are, falsely, in an effort to deny what is happening. In an effort to hold on to yesterday for one more day. But it isn’t fair to your children.

I know you think you are doing the right thing, but you are doing the easy thing. There is nothing on Earth harder than breaking your child’s heart. You tell yourself you are doing the right thing, by delaying that broken heart as long as you can. What you are really doing though is postponing that broken heart until such time as you are either gone, or too weak to be able to support their processing.

You don’t tell the children so you won’t have to deal with their pain – not so they won’t have to deal with yours…that’s not what we do as parents.

Now is when you’re children need to know. Not tomorrow or next week, because I promise you tomorrow, or next week, or the week after will bring the day you most dread when it will be too late.

Tell them when you are diagnosed. Let them be a part of your healthcare and support team. Including them early on prevents them from being at the ‘can’t we do something stage’ when you’ve already determined there isn’t. You don’t have to have all the answers when you tell them. The fact you let them in on the process will allow them to deal with whatever comes along.

You are leaving them and that is inconceivable. However, they are going to have to live a whole lifetime without you. They are going to need every second possible to grasp that and to gain the tools necessary to make it through some important milestones and intense challenges.

They will feel powerless in all this – much like you – so give them opportunities to feel empowered. Give small children small jobs, like being “Mom’s water pitcher manager”. Give older children tasks that play to their strengths like making Dad’s favorite play list or a favorite sandwich. Allow them to feel they serve a purpose in supporting you.

Give them space to process and opportunities to express their fears, feelings and faith. They will need help navigating these emotional waters, give them as much time possible to do that by telling them as soon as possible. They need you, now more than ever, in order to cope with losing you. After all who better to teach them?

When you keep the truth from children you deny them the maximum time possible to process their anticipatory grief and to cherish their time with you.

“They’re Too Young To Know What’s Going On”

No child is ever too young to know when something is changing. Even infants are affected by grief, as they pick up on the emotions and energy in the environment and in their caregivers. They will need extra soothing, comforting and nurturing to calm their distress. Infants and toddlers need extra physical comforting because they cannot process linguistically yet. They might need to be held more. They might need extra reassurance about mundane things. They’ll need to sleep more. They’ll need you to honestly deal with your own feelings because they will sense the discord if you are not.

The older the child the more aware they will be of the non-verbal cues in the household. No, your three year old will not process the same information as your sixteen year old. They still need to be part of the process, though.

Why Tell Them When It’s Only Going To Hurt Them?

Because every child knows the temperature in their own house. Every child I’ve ever worked with, knew things were bad long before the divorce papers were filed. Yet, every parent felt so sure that ‘the children didn’t know anything’. So, many children end up in therapy for ‘behavior problems’ only to find out they are lost in an emotional forest because they experience congruence: “I sense something is wrong, but everyone says it’s all fine.” The truth of their experience clashes with the lies of adults and creates chaos internally. If you ever wondered how ‘gaslighting’ got it’s start, here it is.

If this is true, then it is more true when a parent is terminally ill. Our children are comprised of our blood and DNA. They know things about us. They know when we are not being honest and truthful. They know when we don’t feel well. And most of all they know when we are afraid.

It’s more than ok to share that with them – it is necessary for their emotional wellbeing.

When we are diagnosed we are not the only ones…everyone else in our life receives the diagnosis as well.

When we don’t share the truth with others we take away their rights. Yes. Their rights. Their right to support us as they desire. Their right to take care of us like we’ve taken care of them. Their right to have as much time possible to process feelings and anticipatory grief. Their right to share this experience with us. Their right to their own experience of our dying and death.

When we don’t share truth with others we take their freedom. The freedom to choose how to say good-bye, how to spend their time, and how to grieve. We rob them of the opportunity that comes with time, too. The opportunity to share the words on our hearts, to make lasting memories, and to bear witness to and for one another.

When we keep the truth from children we are not shielding them, we are isolating them.

If you or your spouse has been diagnosed with a life-limiting illness or has received a terminal prognosis, you and your kids have already been dealt a crappy hand. Don’t make it worse by stealing precious time from one another because it is painful. It’s going to be painful no matter what. You can’t control the wounding, but you can control the bleeding, so to speak. Every decision you make regarding sharing, or not sharing, the truth with your kids impacts them in one of two ways: either helping the healing process or complicating the grieving.

Here’s something else.

Tell the children because they already know. And if they already know, then they also know you aren’t telling them the truth. And if they know you aren’t telling them the truth, they can’t trust you to tell them truth in the future.

And that is the most damage you can inflict in a parent/child relationship.

We cannot protect our children from a diagnosis. We can only help to arm them with appropriate tools to come through this to the other side.

This loss is something they will walk with the rest of their lives. It is important we do this one thing right because there are no do-overs. We only get one chance to say good-bye.

Jade

Holistic Support Specialist, Interfaith Minister, First Responder Chaplain, Shaman, Energy Healer, Licensed Social Worker (ret)

The Four Acts Of Empowerment

Four Acts of Empowerment

One of the scariest situations we can be in, is the one where we are not in control. This time in our country’s timeline will go down as one of the scariest of all; A time when we had to physically separate from loved ones for fear of a life threatening invader.

In truth though, death is always in our cards, we simply have chosen to exist in denial about it. COVID-19 is forcing us to consider our mortality and that of our loved ones. Everything about COVID has taught us we are not in control of anything outside ourselves. We are not in control of what our government, our neighbors, our employers, the healthcare system or the virus does. We can only control our own thoughts, actions and beliefs in any given situation.

When we don’t feel in control, we don’t feel empowered. The problem is not the lack of control. The problem is 1) thinking we were in control of things we weren’t and 2) not exerting control over the things we were.

These four acts of empowerment are useful across the board of our lives. It is important to look at this because fear is a very dangerous symptom of any crisis. And if you take the time now to come to some sort of terms with your own mortality, I promise you, it will change the way you live your life after this crisis is over.

Empowerment is the anti-dote for fear.

Before I share the ACTS of Empowerment, let me say this – empowerment is an inside job. I don’t believe in beings empowering other beings. We are empowered from the second Life is Breathed into us. Throughout our lives we discover more and better ways of accessing and demonstrating our power, and THAT is something that others can support us in…but no one else actually empowers us.

Acceptance

The first act of empowerment is Acceptance. To accept what is, as is. Dissonance happens when we are in resistance to what is, by looking back to what was. In today’s happenings we ask ‘when will things return to normal?” But normal is gone. Normal is attachment to yesterday. Yesterday we had a plan and today that plan is no longer in play.

We have to embrace that today there is something new at work and we haven’t yet figured out what it is. That’s ok. It’s ok to stand in the not knowing. In fact, that is what we must do to get into acceptance. We have to also acknowledge that we have grief over the loss of yesterday’s plan. Not having a ‘normal’ is a loss and grief is the emotional reaction to that loss.
To get to acceptance we must embrace what is, even if what is feels like ‘stuck in the mud’. It’s ok to sit still in the mud for a minute. Embrace that. Accept that. Attachment to how things used to be keeps us in dissonance and acceptance cannot live there. Resonance breeds acceptance. So, pay attention to what resonates with you at your highest level.

You don’t have to like something to accept it.

That’s key. Just like forgiveness doesn’t mean you condone someone’s behavior, so too just because you accept something doesn’t mean you like it. Acceptance just means you are in the present moment, understanding it as reality. You are no longer trying to change the moment back to what was yesterday. You are also not looking to tomorrow hoping to recreate yesterday. That’s another key. You take what is today and see what you can do with it even if you are not its biggest fan.

The place of acceptance is resonance vs the place of resistance being dissonance. The more you follow resonance the more empowered you will feel. Acceptance resonates at a high level. Even if you don’t like what you have to accept, accepting it will be more resonant than remaining in a state of resistance.

You will know you’ve entered a state acceptance when you can at least say ‘Ok FINE! Now what?’ Resignation is a form of acceptance.

Connection

The second act of empowerment is connection. When we feel disempowered we feel isolated and vice verse, so it stands to reason that the anti-dote to that would be connection.

You might be thinking this is quite the challenge during this quarantine lockdown we are in, but you would be wrong. The kind of connection we are seeking here is actually something that has been missing for a long time, yet within everyone’s grasp.

Many are talking about ‘when this is over we will return to normal’. Others are saying that the normal that once was will never be again. And I hope that is true. Our normal was seeing a gathering of individuals, most of which were on their phones or other devices. Now, when connecting via devices is the only life line we are beginning to understand how much we took face to face for granted.

The connected we are talking about though in regards to empowerment is the connection to something bigger than ourselves. This does include connecting to the love that we have for family and friends, however it has to also include something bigger than that. Whatever your Source is for Love and Light. The All. Whatever name All goes by for you: Allah, Jesus, God, Mother Earth, Goddess it doesn’t matter. Whatever you feel is a higher consciousness or a bigger energetic body than you.

Where do you connect to that Source? Church? Well, where else can be your church now? A backyard meditation garden is a wonderful start! Out in nature is an easy one, because everyone ‘believes’ in nature! Nature works its magical wonders of connection on you whether you realize it or not. If you don’t have a backyard then find a county or city park that offers you some natural habitat. If you can find a body of water, even better.

Other ways to connect to Source is to create a small altar in your home and sit with it for awhile. You can meditate, or pray, or do rituals, or say spells…they are all basically the same thing. You might have been conditioned to be afraid of one or more of those words but honestly they are all containers for the same energy.

How do you make an altar? Simple version: cover a small table with the scarf or hanky of a loved one and place a candle on top. You can get as elaborate as you want from there by adding fresh flowers, dried herbs, crystals, family pictures, sage, incense, bowl of water, images, icons, rosaries, prayer beads, malas, statues etc…

Whatever makes you happy and adds to your connection to Source.

Spending just 15 mins a day in quiet solitude in front of your altar will offer you a wonderful connection.

Connection to something bigger than you gives you power to handle the situation you are in. It isn’t really a belief system thing. It is an energetic feeling. You can’t believe it into being. You can’t speak it into being. You have to practice it into being.

Transmutation

The third act of empowerment is transmutation. The transmutation process changes something from one form into another form. In this case, transmutation is the act of changing negative into positive, and changing negative to positive is the basic premise of empowerment.

Beginner empaths are often taught to ‘block’ or ‘guard’ their energetic fields in order to protect them. This is a necessary step in learning how to manage energy, however it is not a landing place.

When we block and guard we do nothing to improve the situation. We simply allow the less than desirable energy to remain in the environment and affect the next person who comes along. Don’t believe me? How often have you walked into a room where an argument had ensued and ‘the tension was so thick you could cut it with a knife’? Now, if someone had transmuted that energy then no one else would walk in and feel that.

Developing the skill to transmute negative heavy energy into positive light energy is an important evolution in any energy healer or empath. However, even non-empaths and those without an interest in energy healing need to engage in transmutation. It is simply a matter of not adding fuel to a fire.

When someone comes at you with negativity or aggression, you respond in neutralizing opposition. Which means, you don’t respond with negativity or aggression, but with compassion and assertiveness.

It means not perpetuating the situation, as well as not escalating it. Phrases like “I understand what you are saying.” “I hear you.” “Maybe we can talk later.” “That sounds really painful.” “I can see you are really hurting.”

This doesn’t imply one allows bad behavior to continue. It dictates use of compassion to help the other feel supported so that they can change their own behavior. When efforts to do this fail, it is advisable to extricate oneself from the situation and circle back to the person at another time if desired.

If you can’t practice transmutation then you must at least refrain from contributing to the heavy energy.

A wonderful side effect of this practice happens automatically. You will find yourself lighter, with less stress and feeling more emotionally stable. Indeed, you will find yourself empowered.

Becoming skilled in transmutation you ultimately leave the world in a better state than you found it.

Surrender

Surrender is often defined as giving up, but that is not the spirit of Surrender. The spirit of surrender is to cease resistance. The essential art of going with the flow, instead of swimming against the tide.

Surrender realizes that forcing something is a sign that whatever ‘it’ is, is not for you at this time. Releasing the need to control outcomes is the swiftest way to surrender. It isn’t that you give up on your goal, it is that you realize you might have mixed up your goal with one possible way that goal can be met, which is in fact, not a goal but merely one possibility. In other words, your goal might be making this relationship the one to end all relationships, when in fact that is one possibility for the actual goal which is to be in a relationship that serves you.

Surrendering will be understanding that the best way to meet your goal would be to let go of the relationship that seems to want to end rather than pulling out all the stops to keep it in play.

Surrendering requires us to evaluate obstacles when they show up. Obstacles on our path serve two purposes: cause to pause and redirection. Cause to pause, is an opportunity to really take stock of what is happening. Is it for our highest good? Is this what I want? Usually this obstacles simply gives us the opportunity to ask ourselves ‘why?’ Why do I want this? Why do I feel this is in my highest good? And to ask ‘is this worth it?’

After such pondering it is easy to see that sometimes a change of direction is warranted. When you ask ‘is this worth it’? And answer ‘no’, then you must switch directions. Take the opportunity to redefine your goal to make sure it is a goal and not just one possibility. Restate your goal. Envision it. Then choose the new path to get there.

Surrender is not about giving up, it is about leveling up. It’s about Trusting your Higher Self and Divine Grace to get you where you want to go. In surrendering we feel more empowerment because we understand that the Universe is conspiring on our behalf, rather than believing we are all alone against the world. We no longer believe that we have to be in control of everything, because in fact, we cannot.

The Four ACTS (Acceptance, Connection, Transmutation, Surrender) can be used in any situation to develop your Empowerment. Apply it to work, life, problem, challenge, parenting, encounters with bullies and other crabby people as necessary.

If nothing else remember that empowerment is an inside job.

A Dialogue About Death

Every story ever written has a beginning, middle and an end. Every author considers the end when first sitting down to write a storyline; However in the greatest story an individual will ever author, the end is often left unscripted.

We can’t write death in on our calendars and begin to plan when it seems ‘timely’. On the day we are born our death is written onto our calendar in invisible ink.

Modern day society chooses to approach death as if acknowledging it is morbid, preparing for it hastens it and accepting it is giving up.

Talking about your end of life care preferences when death is a remote possibility, supports decision making about end of life care when death is a probability, and promotes healthy coping during end of life when death becomes an inevitability.

In December 1974, my uncle was home from his work as a missionary priest in the Amazon, when an aortic aneurysm ruptured and he died in his sleep. I was nine years old, in the kitchen, as the discussion of burial arrangements took place and there was question about where he should be laid to rest. I said I knew where he wanted to be buried.

Every year my uncle hosted our family reunion on the grounds of the Villa Redeemer Monastery in Glenview, Illinois. On this property was a small cemetery and on one of our walks through the grounds that summer, my uncle told me he would someday be laid to rest there.

Because he shared that with me, I was able to share that with my mother. It was a small conversation that made a big difference to my mother in her grief.

Perhaps because my grandmother grew up on a farm where death was recognized as a part of life; Perhaps because my mother’s brother died at four years of age; Perhaps because my mother grew up during WWII; Perhaps because my own father died when I was three…perhaps for all these reasons, death was not a taboo subject in my house growing up, nor has it ever been a taboo subject in my own home as an adult.

Embracing mortality has emotionally prepared me to make life and death decisions in unexpected moments. This preparation does not make decision making easier – it does however, make it less complicated.

When we live in denial of mortality we create an illusion that creates complications during times of crisis. It requires that our psyche do some serious catching up in very little time, and oftentimes there isn’t enough time to actually catch up.

The internal dialogues might look like this:

Prepared: (death is a real possibility) “No. No. NO! I can’t believe this is happening. I knew this day would one day come, but today? I’m not ready. I’ll never be ready. I can’t make these decisions. I don’t want to make these decisions. We talked about what to do, but I don’t want to.”

*breath*

This isn’t about me. It’s about Mom and living life on her terms. It’s so hard to imagine this, but Mom has always been clear about what she wants.”

(death is a probability) “I don’t want to believe that I have to do this, but I know what Mom wants. She’s told me all along. She doesn’t want to merely exist. She doesn’t want to be on machines. She doesn’t want to be a burden. She wants to live life on her terms. If she can’t be an independent active participant in life, she said she didn’t want to prolong her death. She prepared me for this, but my heart is breaking.

*breath*

I don’t want her to suffer for me. I want her to be peace-filled.

(death is inevitable) “I’m sorry Mom for the things I did that hurt you. Please forgive me, hurting you was never my intention. Thank you, for teaching me what friendship means. I forgive you, for all the things I was ever angry about. I love you.”

*breath*

Mom, it’s ok to let go, if you need to. I’m here. I’m right here.”

(death comes)

Unprepared: (death is a real possibility) “No. No. No. No. NO! I won’t believe it! We have to keep fighting. You have to keep fighting, Mom. You are a survivor! You got this! Yes, keep her alive at all costs. Don’t give up on her. It isn’t her time yet. I’m not ready yet.”

There has to be something else we can try. Why is she getting worse instead of better? What are you doing?! Why aren’t you helping her?”

(death is a probability) “Mom, I know you are tired and suffering but you have to keep fighting. This isn’t over yet. You still have so much to do. I need you. Your grandchildren need you. I am not prepared to say goodbye so you have to keep fighting, ok?”

You are not a quitter! Don’t you give up on me!”

(death is inevitable) “I can’t believe this is happening. I knew this day would one day come, but today? I’m not ready.

I’ll never be ready.”

(death comes)

I didn’t even have the chance to say good bye…”

Preparation is not morbid. It does not hasten death. It needs to be seen as the natural order of authoring our lives.

Just as preparation does not manifest death, it also does not guarantee the circumstances of our death. We cannot foresee details, but we can verbalize the atmosphere we’d like it to have. Because at birth our death is already added to our ‘to do list’, it is appropriate to have ongoing open conversations about what we might want to include and exclude from that atmosphere.

Amidst the COVID-19 pandemic our mortality has never been more undeniable. Take this opportunity to begin having conversations, exploring your fears, beliefs and hopes about your own death. Tell your loved ones what your preferences are to ease their emotional burden when the time does come. Your loved ones may not have certain choices regarding your end of life care, but at least they will have your Voice as guidance in making the really tough ones.

It may not come during this pandemic – we all hope that is true – but clearly, death is happening all around us now. We might still live in fear of it, but we can no longer deny the possibility, probability and inevitability of our mortality.

It is in embracing the existence of our death that our best living begins.

Pandemic Traumatic Grief

To a certain degree there is trauma in every loss, whether it is the unexpectedness of it, the suffering of it, the impact of it, the violence of it or the massiveness of it. Every loss has an element of trauma to it.

It is the magnitude of the event that makes it traumatic.

As a three year old, I woke in the middle of the night due to a loud noise and ran into my parent’s room for solace. Instead, I found my father lying tangled in the bedsheets on the floor. I didn’t understand what I was seeing. To me he was sleeping on the floor, so I tried my three year old best to wake him up. Shaking him and calling his name and telling him to wake up. When that didn’t work, I ran into my grandmother’s room, woke her up and told her ‘something’s wrong with Daddy’.

Traumatic grief.

What made it worst is that no one ever talked with me about it. I didn’t speak for three days and did not say the words ‘good bye’ again, that I remember. I suppose their thought was that I was three and was too young to remember. Yet, at fifty-five I still remember it as clearly today as I did that night.

Traumatic grief.

The common experience of devastating natural disasters such as hurricanes, tornados, earth quakes and tsunamis is that what was absolutely known one moment is absolutely gone in the next. The landscape of our lives, our homes and our city skylines are completely destroyed and eliminated – physically and emotionally.

Traumatic grief.

September 11, 2001 when the first plane struck the twin towers in New York City, New York, USA, there was grief…”How could this awful accident happen?” Before we could even process that grief, the second plane hit and the question turned to a statement, “This was on purpose.” As the following two planes were identified as part of the plan, the new revelation brought more grief.

Traumatic grief.

With the realization that there would be more recovery than rescue, our trauma compounded. With the information that insurance companies did not cover ‘terrorist attacks’, our trauma compounded. With each last voicemail messages shared, our trauma compounded.

Traumatic grief.

Today a biological siege is upon us.

We are at the mercy of an enemy we cannot see, but who’s damage is leaving bodies in bags and crushing spirits. We panic at the subtlest of symptoms because information is nebulous at best, ever changing at worst. The emotional, mental, financial and social landscape of our lives has changed almost overnight.

Unlike weather related natural disasters we have no visual evidence of destruction available on the news to help us move from the initial denial stage of grief. While in denial, we can’t possibly make the right decisions to ‘stay safe, stay home’, because we are still reaching back for the life that so swiftly disappeared. It is almost as if we see the old life before us and we struggle to realize we are looking at a memory.

Others who are not in denial, those who are in an anger stage, see these choices as irresponsible and stupid. They will blame those in denial for the ongoing worsening of the situation. The anger stage causes increased bullying, trolling and arguing. This compounds trauma.

We find ourselves bargaining ‘too little, too late’ into our new reality. We stay home from work, but make needless trips out into the community. We stop hugging and shaking hands, but hold parties in the park. Still in the throws of denial we attempt to create a reality that is less dissimilar from our ‘before’ reality, than what currently is. This often looks to others like we just refuse to follow the rules. And it might be true, but this is grief and everyone follows grief in their own way, in their own time. You can’t mandate people to move through grief faster than they can.

As the new reality is absorbed and the magnitude of the trauma is processed, depression sets in. Add in the social distancing and isolation requirements of quarantine with stay at home mandates, the traumatic depression is compounded.

Our normal remedies for such things are not available with social distancing, isolation and quarantine in place. So the damage/danger rises. The trauma compounds.

In addition, we have the financial upheaval this creates individually, locally and globally. The trauma compounds.

Our healthcare professionals are being asked to perform super humanly. They are not staying at home, staying safe, because they can’t. We need them on the front lines and they have stepped up. They sacrifice their needs for the needs of the whole which is more than the system does for them.

When this is over these heroes, who gave their all, will not have the opportunity to recuperate, because healthcare needs are always present. There won’t be the opportunity to sit on the couch watching netflix or play board games with their children. In fact, many will develop PTSD. The trauma compounds.

What does acceptance look like in a scenario like this?

It looks like neighbors having dance parties in driveways, virtual celebrations of life for loved ones, individuals making hundreds of respirator masks for healthcare professionals, teachers teaching online, neighbors checking in on neighbors. It looks like people moving from busy to being. It looks like calm within the chaos.

It looks like creating a new reality that holds more reverence for life and relationships. It looks like a society that takes care of the whole not the few. It looks like healers stepping forth as a new kind of hero.

It also brings with it a new acceptance of our mortality, the need to plan for it and discuss it more openly. Our death, while we do not need to hasten it, we cannot deny its inevitability. The discussions about advanced care decisions and end of life ceremony and disposition preferences have been taboo for far too long. Now, we are faced with what the end of life community has begged you to understand.

Not only is the date of our death unknown, unimaginable and unpredictable, but so too are the circumstances of our death. We may or may not have forewarning, and any forewarning will likely be only weeks, days or mere hours in advance. And if you are not listening close enough you may not even hear the forewarning when issued.

Every day has a birth and a death written in it’s sunrise and sunset. Every day you too carry your birth and death with every inhale and exhale. It is a luxury to think your next breath is a given. It is a luxury to think your tomorrow is a given.

This is part of what compounds our traumatic grief during this time. Because left and right we are now forced to face mortality as the death toll is announced. The truth is though that we are a society almost desensitized in our traumatic grief. Soaring murder rates, increased poverty, mass shootings, terrorism, war and violence against women and people of color has all contributed to our collective trauma. So, once again, our trauma is compounded.

Our experience with death is changed right now. We don’t even have the basic right to have someone at our hospital bedside, much less the choice to have a funeral or memorial with all loved ones in attendance.

This is not the time necessarily for discussing whether or not you’d prefer lavender or peppermint essential oil diffused in your bedroom in your last days. It is, however, the perfect time to seriously discuss where your quality of life line lies. What aggressive measures you would or would not want taken should it come to that.

It is the time to make sure your legal documents are in order, your passwords are accessible to a trusted person and someone knows something about your wishes regarding your final resting place.

It is also the time to do some emotional estate planning. Write letters to loved ones to be read at a later date, at your celebration of life service, or by a loved one at a wedding or milestone birthday. Create photo albums, scrap books or slideshows. Document who is who on the backs of every photo. Allocate special items to special loved ones. Secure arrangements for the care of your beloved pets upon your death. Make a collection of poems, bible passages or other writings that bring you comfort.

Just doing these things will empower you, helping to move you through your traumatic grief and nurture acceptance.

The world as we knew it is over, that’s true; that in and of itself is a traumatic loss. Within us lies the capability to create a new world, though.

Let’s make sure we create a better one. #traumatotranscendent

Message In The Madness

I often receive criticism for my philosophy that within an illness or calamity a message resides. However, it has always served me well to see Life in this way and so I continue. The current event of the Corona pandemic is no exception. The message I have deciphered so far is…

RESET

A forced time-out is what we have needed globally for quite some time. That time-out is now. You have no where to be, unless you are fulfilling an essential role in retail and health care.

We have spent far too much time on devices with those not present while in the face to face presence of others. Now, we have been forced to separate our faces and rely largely on those devices. See now how there is no substitute for face to face encounters. It is time to reset our priorities, our philosophies and our practices.

We have been absent while present, now we must find a way to be present in our absence.

R

Rest. Relax. Restore.

Rest – Sleep when you are tired. Take naps.

Learn again what it means to follow your natural rhythm. If you are one who would rather stay up until midnight and sleep until 8:00 am when you naturally arise, without an alarm, then do that. Naps are little gifts. They allow us to be more creative because they offer our brains a chance to reset. Just like this time-out.

Relax – Take time to read those books on your shelf or on your kindle. Take more hot baths, with candles and music. Start a meditation practice or deepen your existing one. Take long walks if possible.

Restore – Explore new aspects of yourself. Begin a journalling practice. Do more self-care treatments like facial masks, ear candling or deep conditioning your hair. Take an online yoga class. Do some yard work. Most individuals are running on fumes and have been for some time now. Take this time to restore yourself back to balance.

We’ve put so much busy-ness in business.

Try BE-ness.

E

Educate

Take an online course. Explore something that you’ve always been interested in but hadn’t yet gotten to. Read books that are beyond entertaining and create new neural pathways. Explore alternative perspectives. Stretch yourself. If you have strong opinions about something, explore the opposing viewpoint. Use this time to grow your mind.

Feeding your mind with new information diverts attention from panic…

S

Sacred. Surrender.

Sacred – Without a doubt, this has been something I’ve identified as lacking in many lives. Honoring the sacredness of life. The loss of reverence for life. The lack of respect for it. Above all else I believe this to be most important. I believe this is where the illness truly lies. That we have gotten away from the sacred in favor of religions, politics and the pursuits of materialism, capitalism and consumerism.

Sacred is a deep connection to the soul.

It is the deepest of connections. It is the purest expression. Sacred is holding a new born baby. Sacred is lighting candles and saying a prayer. Sacred is joining a global meditation. Sacred is casting a spell. Sacred is a song that moves you to tears.

Sacred belongs in our everyday lives…not just on Sundays or holidays. That’s not sacred. Sacred is that place where we experience the deepest meaning in life. That place where we cannot differentiate between ourselves and our higher power. That moment when we feel our connection to the entire Universe and know we are all at our greatest core…fine.

Surrender – Surrender to Divine Grace. In lieu of panic, worry or frenzy, surrender to your Faith. Whatever that Faith is, surrender to it. If you believe in it, believe in it fully. Take the tenets of your belief system and really live them. For me, it means I don’t panic over anything I can’t control. By default then there is no reason to panic regarding things that I can control, either. So, I do my part and surrender the rest to Divine Grace. But that’s important, DO YOUR PART first, THEN surrender the rest.

E

Expand

This is another really important one. Expansion of our energy fields is imperative for happy healthy living. When we are in fear our energy field is in constriction. We can feel it easily if we check in. The second we take a deep breath and release our energy field to expand instead of constrict we feel immediate relief.

When my daughter was young and began to whine, I would instruct her to change her eyebrows. The eyebrow ‘whine position’ is scrunched. I don’t know if there are any actual studies stating that changing one’s eyebrows changes the physiology, but it worked 100% of the time in our household. When she raised her eyebrows, her voice resumed it’s normal tone. The same is true for fear. We cannot feel fear when our energy field is expanding. We only feel fear when in constriction mode.

T

Trust

Saving the most important for last. Trust. Trust that the Universe is conspiring on your behalf, in ways you can’t even imagine right now. Trust that this is what is needed for you and for all. Trust that what you need you will receive. Trust that your highest good is a priority with the Universe.

This all may happen in ways you don’t want. You might not even recognize the gifts when they come. You might even see them as evidence to the contrary.

Keep trusting. In trusting, we don’t panic. In trusting, we sit in the darkness, calm until the Light returns. In trusting, we find the Light in ourselves and we live in service to it. In trusting, we see the Light in others and live in service to them.

Be still. Embrace the BE-ness of this time. We all need this reset. If we didn’t it wouldn’t be happening. So- rest, relax, restore, educate, create the sacred, surrender, expand and trust.

If you need to DO something, then start having conversations regarding your end of life wishes. Complete your advance care directives. Make a play list on your phone or some other platform that can be played if you ever need it. Start keeping a journal – about your experience during this pandemic, about your memories over your life, about your children, about your dreams, about anything you want.

Much love surrounding you and yours.

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.

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