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'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!