By Wayne Rosenfield, PhD
“Please don’t be angry with him.”
That’s how my friend Sam’s sister began her tearful eulogy. There was a low murmur in the room as all of us assembled at the funeral home shook our heads in agreement. We thought “of course not,” although I and many others were too grief-stricken to actually voice the words.
This was the first time that I had attended the funeral of a suicide. My feelings were mixed, and my thoughts were confused. What was I supposed to feel? I lost my friend, so I should be sad. I recalled the good times that Sam and I shared, and I felt sorry for myself that we would not have fun together again. But the guy in the box at the front of the room wanted this; he wanted us, his family and friends, to be here. So, should I be pleased? There was no doubt that Sam ended his life purposefully and with clear intention. For me it was a very emotionally confusing and conflicted funeral service.
But did Sam really want us to be here for this occasion? Did he really want to be dead? I’ve thought about Sam many times over the course of my career as a psychologist, trying to understand the mindset he experienced, and the motivations for suicide. Twenty years ago, around the midpoint of my career so far, I began working as the crisis clinician in hospital emergency departments. I saw how the pain of unbearable existence translates into desperation. And I saw how the pain of the individual and its resulting behaviors propagates through families and social networks.
Yet suicide remains a touchy subject, and many people are afraid to bring it up. For one thing, what do you say to survivors, the people who have suffered such a loss? Unlike other scenarios that end with death, there may be no chance of preparation for the survivors, just as I experienced with Sam. The pain that initially belonged to a single person touches everyone who learns of the story: family, friends, and even strangers. Confusion, guilt, anger, remorse, and even relief can be part of the picture, but the list of possible reactions can be as many as the number of people affected. There is no predictable script. The whole subject, whether or not the suicide attempt resulted in a death, is going to be intense and raw.
An even scarier question is, “what should I say to someone who may be at risk?” What can we do, before we ever have to confront the reality that someone has died intentionally? We know that suicide risk is predicted by hopelessness, even more than depression. The person without hope does not see the current situation as temporary. The person has not accepted that suicide is a permanent solution to a condition that may only be temporary. Perhaps the person has even received the best evidence-based treatment and is still acutely distressed.
Changing a person’s outlook and making a meaningful impact requires the knowledge, credibility, and finesse of a professional. But the subject should not be taboo in everyday life. Asking a person about suicidal thinking does not implant the idea. Trust me, the thought is likely already there, even if an emergency does not currently exist. Asking a person about feelings and even about suicidal thinking demonstrates that you care. The conversation shows that you are willing to make a connection, even though you may be very scared. The suicidal person may also be scared, especially of not having a solution to the distress. Ignoring the issue does not make it go away. Engage with the person you are worried about. Acknowledge feelings and say that you will be there. Call for professional help sooner rather than later.
I found that I could cope with immersion into these situations. And, with the addition of considerable professional preparation, I could be the psychologist in hospital emergency departments, dealing with suicidal behavior multiple times each day. At my high school reunion someone who last saw me as a teenager asked “So, you’ve been a psychologist all these years. Have you seen it all? Does anything surprise you anymore?” My answer required little thought. “Every day is different,” I said.
The complexity and uniqueness of these situations cannot be understated. Yet there are certain commonalities. Everyone has changes in mood, and many people struggle with depression or mania, or with disturbing thoughts or perceptions, or with painful losses and other life experiences. Suicidal thinking is surprisingly common. But suicidal behavior is far less common, fortunately, and even less often successful.
In the emergency departments it was always great to be able to tell parents and loved ones that we were not in an acute emergency at that moment. But sometimes the situation was dire and very dangerous, and immediate intervention was required. I have known people who eventually intentionally died. But I have known many more people who thanked me later for intervening when it was within my power to do so.
Don’t be silent. Take action for yourself or for someone else.
Dr. Wayne Rosenfield is a psychologist who has worked extensively with high risk and impaired populations. He is presently a professor in a graduate program of National Louis University. He performs assessments for a group psychological practice and is a co-investigator in a research addressing combat post traumatic stress. He is a frequent speaker in the field of rare diseases. His book Great Necessities is available on Amazon.com, you can purchase it here.
As humans we don't want to talk about death, or even the reality everyone will die one day. We definitely don't want to talk about our own death or our family members deaths. But... it needs to happen. Death is a part of life, in fact not only is it part of life, it is what makes life so precious. If we didn't have a limited amount of time then it wouldn't matter what we did with our time. Death is the ultimate elephant in the room, we have a mini existential crisis at major age milestones, but never fully look at the reason as being because our limited time is passing. Recognizing that death is guaranteed we can begin to appreciate what a gift life is to us. While looking at our own end of life is scary, the rewards you reap from confronting the reality are worth it.
The reality is that these conversations are hard to have with our loved ones and there are limitless excuses to avoid the topic and find something more pressing to talk about. When we are healthy the idea of talking about our death or the death of our family members is taboo, morbid, and uncomfortable. However, when we are facing the end, these conversations are not easier to have. Often the family doesn't want to face the reality of what is happening, and the emotional significance of imagining these plans being enacted soon makes them hard to make. If you are declining and your family doesn't want to face it, you are still thinking about what you want and no one wants to hear it. It makes for stress all the way around. If the conversations have been made and documented, you don't have to stress and the family knows its already decided, when its time, the plans will be followed.
How do we facilitate these conversations then? You don't want to think about life being finite when you are healthy and young, and its too emotional when life is coming to a close, it seems like there is never a good time.
The time is now.
Likely, you will live a long life and start to decline when you are elderly and have some time with palliative care, or hospice, or both but there is also a possibility that your life could be cut short. If you are left without any plans for your family to follow, it is more stressful for everyone. Your family will spend possibly years trying to come to grips with what was done or not done as you died because you didn't have an uncomfortable conversation. You may think you will just tell your loved ones when its time, but you may not be able to communicate effectively. Having the talk early means those wishes are clear and can be followed effectively.
How can you start this conversation? Start by deciding what you want, write it down. Let the person or people who need to know, know that you have plans. A simple, "Hey, I have a vigil plan and this is what is in it" can let the conversation get started. It is infinitely easier to talk about your end of life wishes when you are not AT your end of life. This can spark a conversation about what they want and ultimately bring you closer.
There are many benefits to having the conversation early. You get to infuse as much of your personality into the plans as you want, its easier to be creative with your plans when time isn't feeling short. Having a highly personalized plan will help the survivors with their grief. Your perspective on life can shift to treating your time as more precious, making more of your days and enjoying the small pleasures more. Having the conversations with your loved ones when you can assume you still have decades to go can relieve stress they didn't even know they were carrying about how they would manage if something were to happen.
The conversation can be difficult to have, but if you choose not to have it, your death will be so much more difficult. All of us will die one day and we can either make it easy for those we leave behind or we can have our wishes clearly made so those who are grieving can start to heal.
What documents do you have already? Do you have your wishes documented and do your loved ones know where they are?
When we talk about our end of life, across the age spectrum we hear the mantra of "I don't want to be a burden". All socioeconomic backgrounds and from millennial to boomer people don't want to be a drain on their family financially, physically or emotionally as we die.
Excessive financial costs spent at end of life, is not something most people want to spend or burden their families with. When we have realistic understanding of how much time these treatments might be able to buy us, it is usually not something we would choose.
We worry about being a burden with our logistical issues, and that is pretty easy to get around. Get your affairs in order early. Make a will, pre plan your funeral and your vigil plan. If you don't have to finances to pre pay for a funeral at least write it down and let your loved ones know you have a plan and where it can be found. Do this even if you are healthy and young because you have no idea what tomorrow could bring. Creating these things once something has happened or a diagnosis has been made, its much more emotional and more difficult to create. Make an in case of emergency file, include your financial documents, your will, your doctors numbers and your end of life wishes, then let the people who will need this information in case of tragedy know its there.
Now we get on to the more difficult and faceted issues: physical and emotional burdens. As you are on the decline at the end of life you will have more physical needs and less that you can do for yourself. The inclination to outsource to medical professionals is strong, you don't want your family to have to stop their everyday lives to help you. The emotional burden of watching the decline is difficult at best. We have an instinct to shield our families and loved ones from this, thinking that a third party whose job it is to care for dying people is better. This, although admirable is often misguided and can cause more pain.
There is a certain intimacy gained by caring for a person as they are declining and are able to care less for themselves than they once could. The desire to 'not be a burden' can result in a much harder time dealing with the grief after you've died. If your loved ones are asking to take care of you in real ways, let them. The idea that if you die away from where they live that will save them from burden is not accurate. Giving your family the opportunity to be present during your end of life, to help with your care, and to start their grieving process is the ultimate gift. Watching your decline day to day will help them begin to accept what is happening and cope better with their grief. Obviously there is a place for nursing care, around the clock care often can not be done by the family and we need help. Sometimes all we can offer is brush our loved ones hair and wash their hands. Small comforts given at the end can soothe both the dying and the survivors.
In today's society we have removed death from our lives. so that when we suffer a loss its much harder. We have lost the perspective of watching someone decline day to day and the loss feels more abrupt. When we don't see death as part of life we don't know how to cope when a loss happens. In contrast, when we have been present in whatever capacity we are able as our loved one declines and dies it becomes very clear that death is truly a part of our lives.
At the end, you are not a burden, the last months or days you have left can be such a gift to your surviving family and loved ones. Let them care for you in any way they are capable. There is nothing more human than the desire to care for those we love. Let them be present.
Have you been in the presence of the newly bereaved and wanted to avoid saying the deceased person's name because you don't want to cause them pain? I know your heart is in the right place... but, say their name, tell that story about that time. Ask about what they were like if you didn't know them. Your friend might cry, they might even say they just can't talk about it right now. That is okay. Its okay to observe sadness and grief. Can you imagine though, suffering the most awful loss and everyone acting like the person you love and are trying to make it through without, never existed?
Say their name. Tell that story. Let them grieve in front of you.
When you talk about the person that has died to the survivors, it gives them the permission to be sad. In our society, everyone expects you to move on with your life after a short period of grief. We expect people to eventually recover from grief, like its a cold. Grief is a permanent state. Those losses have scarred our souls forever. If people have not started to appear to recover from their loss then we start talking about them needing therapy. Therapy is never a bad idea, but survivors of loss are allowed to be sad. They will always grieve.
When you talk about the person who died you give the bereaved permission to show their scars. Be present for someone else's pain and loss, as uncomfortable as it is, you are allowing healing to take place. If you are afraid to remind them of the person they love because you don't want to cause them pain, they haven't forgotten. You are not reminding them. Those scars are there and just like you don't want to hurt them, they don't want to make you uncomfortable by grieving in front of you. Be the friend who will bear witness to their grief without running away.
In ten years drop them a line to say you were just thinking about their loved one. Don't erase their memory because it might cause pain, its so much more painful to think they were forgotten. In Mexican culture there are three deaths, the first when you realize one day you will die, your actual death, and then the last time someone says your name. This last death, the last time someone says your name is the wound to the survivors. The way to share the grief is to let the survivors know you remember, you are also grieving.
If your grieving friend brings up their loved one, let them talk. Do not turn away because its uncomfortable for you. We tell people to 'let it out', be there so they can. Even when its uncomfortable for you in the moment, you will not regret providing the comfort of listening to your friend. Do not compound their loss by disappearing when they need you.
Say their name. Tell that story. Witness their grief.
After we have lost a person in our own household, grief lives in every nook and cranny. Their favorite spot on the couch, the bathroom toiletries and even in the refrigerator with so many leftovers.
Its easy to stop taking care of yourself when your world is overrun with grief, to stop cooking healthy food so you don't have to see how much is left when the person you love is no longer there to eat too. Looking in the refrigerator and seeing the Tupperware full of leftovers can reduce you to tears when all you wanted was a late night snack.
We know we have to care for ourselves. We are told to exhaustion that we need to feed ourselves, we are just never told how to manage that without the sharp edges of grief cutting deeply.
In the early days of loss, people bring you food, so many casseroles and covered dishes. One day, however, you will have to start to care for yourself and whomever is left in the house. We all know eventually the sharp edges of grief start to round and you can bear the injuries a little easier. In the beginning though, protect yourself. Your life is different now and trying to do things the same is not possible and only will cause you pain. Cook a half recipe, or a third, the image for this post is a chart to cut a recipe down to size.
You will find that the pain of doing things differently is more rounded than the pain of trying to live a life that has been irrevocably altered. You will still find sharp edges where you didn't expect it, a cut to your soul that will bring you to your knees when you thought things were righting themselves, but acknowledging how different your life is now will help you in the beginning. Avoid cooking their favorite dishes and their favorite movies.
Eventually, it starts to feel like you have created too much space between you and the one you have lost and you will want to revisit those old wounds. This is a good time to cook their favorite foods and listen to their favorite music. Eventually, you will find comfort in the old pain, but, in the beginning, find ways to treat yourself tenderly.
What have you changed after a loss?
When we first lose someone, everything is colored by grief. The coffee would be better if your loved one was there to enjoy it with you, that actor that they liked made a new movie they will never be able to see. All the little things are small tragedies in what you can't share and what they can't see. In the beginning we believe that we can never be happy and celebrate again, holidays will always just be what your loved one is missing. Slowly, though, our world starts to right itself and the haze of grief starts to abate. We can start to find real happiness in our lives again, although the haze is never fully gone. For most of us, there will always be a moment that we think how much our loved one would have enjoyed this.
Eventually though, there comes a time when a holiday or event arrives and it is time to celebrate life, and not just mourn. That first year, or several years will be the hardest, (and I recommend a ritual to help you through it here) but you will get to a point that you look forward to celebrations again. For some, this feels a bit like a disloyalty. How can you move on and be happy again when someone you loved is gone? You will hear all manner of platitudes about how they want you to be happy and not mired down in grief for the rest of your life, but doesn't enjoying life again mean you are letting go and there is more distance between you?
When loss is fresh and you feel like you are drowning in grief, when you can finally breathe a little again, you don't chastise yourself for starting to accept the new reality. It only becomes something we really berate ourselves over when we finally start to experience happiness again, and then you are going on the rollercoaster of grief again, and you don't even remember getting on. Feelings of survivor guilt and loss can overwhelm us when we thought we were about to have a good time.
When we suffer a great loss, our grief becomes part of us, a part that doesn't completely heal. There will always be haze of grief when someone who should be there isn't anymore. You are not abandoning them by enjoying yourself, you are a stronger person and honoring their legacy by finding the strength to stand again and smile.
We talk about the different causes of grief frequently, loss of a loved one, loss of a career, loss of expectation. These are all part of something bigger, loss of identity. When we lose a loved one we talk about losing a piece of ourselves, but often we don't really acknowledge that we have, truly, lost part of our own identity. The survivor changes from a spouse to a widow(er), a parent to someone having suffered child loss. a sibling to an only child or birth order being changed. Losing a career changes your identity equally, our work is so wrapped up in how we see ourselves and, unfairly, how much worth society attributes to us as people.
We are aware of the grief caused by the loss, but often we don't acknowledge the loss of identity that we suffer as a result. When we don't acknowledge and articulate the additional loss, we have a harder time recovering from the losses. A change in identity through loss is very different than when we change our identity by choice, going from single to married, not having children to a parent or even married to divorced. Usually these changes in identity have been contemplated over time and are welcome changes even if they may not be easy. When we have a sudden and dramatic shift in identity through loss though, it is not something you have control over and not something you would choose.
We are often so close to being aware of what we have lost in addition, but often fail to fully make the realization that we are suffering multiple losses. If you tell someone that your last living grandparent has passed we instinctively understand that this is more significant than an older family member dying. We don't, however, think about the loss of being a grandchild any longer, or that it makes your own parents generation the oldest living family members. Losing a grandparent is hard, particularly if you were close, but it is accepted as the natural order. We age and eventually die, making losing the most senior member of the family a lesser blow than losing a sibling or child. Once you have lost all the grandparents though, the loss of identity as being a grandchild is combined with the anxiety of looking at your own parents as the oldest generation.
Suffering through grief is messy and difficult but nearly impossible when you don't acknowledge the entire loss. When we don't acknowledge that we have lost more than a person or a career but who we think we are, we come completely unmoored. When our internal identity is altered it can feel like we are unable to find our footing in the new world we find ourselves.
Take the time to think about all the losses you are suffering. Grieve the person you were; spouse, grandchild, child, sibling, friend etc. in addition to the loss of the person. Acknowledge that you have a new title and that it takes some time to find how this new title fits you; widow, orphan, only child, etc. The label can be a painful wound and needs attention to heal the injury to your identity.
How has your own identity been changed by loss?
Do you have a bucket list? A list of things that you want to do before you 'kick the bucket'? A lot of people reference their bucket list, but how many people really have it written down somewhere?
A list of things that you want to do before you die when death is presumed so far off as to be an abstract concept. This is the epitome of living death positive, making a list of things you want to do in your life before your eventual death. Creating a list, and working towards accomplishing the things on the list means when you look back on your life you won't regret you never did that thing you wanted.
If you don't have a bucket list, create one. A real, tangible list, written on real paper that you can hold in your hand. Only put a few things on the list, as tempting as it is to put every city that you want to visit etc., keeping the list short keeps you focused. If you finish the list you can always make another.
You will need to figure out what is holding you back from doing these things on your list. If they were easy to do than you would have done them by now. Often, especially with travel, its a financial limitation. In the case of finances take your short list and tape it to your wallet, or credit card. When you are about to make a frivolous purchase you will have a reminder that you have a goal that is bigger than a new throw pillow from Target.
If its a time issue, for instance you want to write a novel, but you think you don't have the time to get it done, you can put the list on the remote or tape it to the back of your phone. Stephen King said that if you just write 300 words a day at the end of a year you will have a novel. This is your bucket list, maybe 300 words a day is too much, realistically, to get done in a day, so write a sentence or 2. This is something you want to do before you die, its worth taking your time with.
You may have received a diagnosis and know that the end is not long off or maybe your can assume you have 20,000 tomorrows still to live. Having a list of things that you want to get done means you will make the most of however many tomorrows you have left. The same reason that its good to create a vigil plan to really know what you want in your last days, to reflect on how you want to live, create a bucket list so at your end of life you can reflect on a life well lived.
What will you put on your bucket list?
We hear the term a "good death" frequently but how is that achieved? How do we help other people achieve a good death?
First, what is a good death? We think that someone has had a good death when they are at peace with dying, they have released regrets and made peace with the life they have lived. I have talked in more detail in my post titled 'What is a Good Death?'
As a hospice volunteer as well as someone who has experienced loss in my own life I have witnessed people pulling away from the dying person, mostly out of self preservation. What does this mean for the person who is dying? Usually depression.
I have had multiple conversations with healthy people who think it will depress the dying person to see their abundant life, how much their lives have. The kids are crazy and work is busy etc., in my experience people want to hear about your everyday lives. They want to know that just because they are dying, it doesn't mean that life everywhere is ending. They want to hear your future plans about vacation and what the kids are doing.
Taking away all the life from a dying person doesn't keep them from thinking about their own death, it just alienates them from yours. When an illness is long the tendency is to treat the dying person so very carefully to the point of removing yourself in case you could hurt or upset them. Talking about that big project at work or the kids soccer game on Saturday helps remind them that there is a world outside of doctors visits, oxygen tanks and sterile gloves.
Life is messy, and as we approach death medicine starts to take over with schedules and pills, tests and procedures. The harried life that we led before illness is replaced with boredom and loneliness, once we can't keep up with the physical demands of the craziness of life, it leaves us behind. Helping your loved ones feel like they are still a part of your life, your families life, is crucial in keeping depression from taking over. Taking the time to answer the phone, text, and most importantly stop in and visit will mean everything to someone at the end.
Don't be afraid (after you have asked permission) to hold their hand or stroke their hair. Physical touch diminishes as we age, elderly people are seen as fragile and the hugs are brief and stilted in order to keep them from being hurt. The chemicals released in the brain when we are touched are critical for mental health. Often, when you don't know what to say, you can just sit and hold their hand. A simple gesture that lets your loved one know that you are there, you care, and you will be there.
What is a vigil plan? It is a detailed plan for what your last hours to days will look like. I go into detail about a vigil here plan http://foldingpapercranes.com/vigil-plans.html .
Sitting down to think about what you want your end of days to look like may seem macabre on the surface, but it really does help you to live a more fulfilled life.
Being a healthy young person and contemplating your death is seen as potential suicidal behavior. In most people though, giving yourself the perspective of your life as finite, gives you the benefit of focusing your goals.
There are the obvious benefits of having a plan in place in case you receive a terminal diagnosis or some other event happens in which you have hours or days in which you are in active dying. There are the emotional benefits of having the plan in place, creating a plan helps you to recognize what you find most important in your life.
For some people that are dying, creating a plan for what their last few days will look like is too hard to create when it is so near. A vigil plan will provide comfort not only to you at the end as well as your loved ones as you are dying and as they reflect upon your death.
Spending time with your mortality can help you recognize what is most important to you and what you don't have tolerance for anymore. If you think about the limited time you have on Earth, you know what is most important to you and what you will tolerate as well as what you won't. It might mean you decide to start taking classes for something you want to learn or remove yourself from a situation you realize you don't want to spend time with anymore.
After you have created a vigil you may experience a peace you didn't know you wanted. Thinking about your death, and everyone's, is something we naturally turn away from. It is the proverbial elephant in the room, knowing without a doubt that your life will end one day but that you won't know when or how and trying to not acknowledge it. Creating a beautiful plan, knowing that you might not ever use it, can ease anxiety about your eventual death while also giving you the clarity of what you want.
We hear time and time again that people who have a near life experience have a new lease on life, creating a vigil plan can help give you this perspective without risking your life. A vigil plan for a young healthy person is helpful for making a plan for the rest of your life as well as for your death.
If you are interested in creating a vigil plan you can click the vigil plan tab at the top and create an appointment with me.
My name is Abby, my life has been touched many times by loss and grief. This life has led me to helping others navigate their own grief. I have become a INELDA trained End Of Life Doula and a hospice volunteer. I am not a professional counselor or psychologist and all advice given should be treated as advice from a friend.