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)

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.

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.