Have you ever known someone who is dying? Not has died, but that spent a period of time that there was nothing more to be done, possibly with hospice care.
You probably don't know what you are supposed to do, you don't know how to be there for them, maybe sending a card is best. You spend some time looking through the card aisle in the store, to find that 'Get Well Soon' seems to be your only option. This person is never getting better and the best sentiment you can manage is something like "I hope you die with as little suffering as possible". Not exactly a Hallmark moment.
Avoid the 'Get Well Soon' card, they are not getting better, ever. I knew a woman who was released from the hospital in hospice so she could die at home. She was unconscious and had been for days, she was never recovering. I saw a person comment on Facebook that she was going to rally. I still wince thinking about it, this was not the message her family needed as they were coming to terms with letting, this woman who was only in her 40's, go. A message like this is only painful for the family.
So what do you do? Go to the blank card section of the card aisle, grab one you think this person will like. Sit down and write about what they meant to you, how they changed your life, how you are a better person because of them. If this feels overly sappy, remember that you don't have much time to convey these messages. This is a situation that you need to think about if you will regret not doing it.
Writing a card with a memory or a testimony of what an impact they had on your life is part of a legacy project, even if their planned legacy project is vastly different. You are giving them something tangible to review in the hours of downtime. Reviewing the good things that have happened in their lives and reflecting on the impact they have made on the world is going to be the best gift you can give as they die, as well as their family after that person has died.
Can you imagine a greeting card for someone in hospice?
What is death positive? If you have stumbled upon this website you have probably heard the term before. You might think of it as a bunch of people dressed in all black with very dark eye makeup and pale skin sitting around a bookstore or coffee shop (or graveyard) talking about death and dying. Or maybe some very depressed and possibly suicidal person longing for their untimely end. Death positive is none of these things.
Being death positive is about loving life, and wanting to get every last drop of it from your days. Acknowledging that you are mortal, that your time is limited, is empowering and motivating. Really sitting with the idea that you will run out of tomorrows one day will empower you to get everything out of your todays.
When we are very young we never think that we may cease to live one day, life is limitless and parents try to shield their children from the realities of death to a degree. Children may first have to face the idea of death with a pet or a grandparent, still this doesn't really translate to their own mortality. There are infinite tomorrows to look forward to there is no end and therefore no rush, as it should be in youth.
As we age we start to realize that if we are lucky we get 100 years and we have already spent more than a decade of it. Still, its natural to turn away from this information and not think of the limitations time is allowing. Unless there is some event to bring our own mortality into focus, there is no reason to think about it. There are so many years to look forward to and accomplish goals and dreams.
Being death positive means you have made the time to sit and think about the idea that you will not live forever, that life really is short, that one day you will run out of tomorrows, thinking about what that means for your todays. You only have a limited amount of time, and the clock started ticking long before you realized that one day it will stop. Everyday suddenly becomes precious, you can focus on your life's work with more vigor.
Being death positive goes beyond the self realization too, one day your parents are going to die. Really thinking that one day your parents won't be here can give you more patience and understanding with the things that drive you crazy, and the gift of appreciating them while they are here. You may be more interested in having them impart a skill or story, getting down the memories and not losing the legacy. Ensuring your children have ample time to appreciate them and get to know them, knowing that they have already realized how short life is and want to spend time with you while they are able.
Focusing on your mortality might seem morbid, but it leads to the best life you can live. Getting the most out of your today and all the tomorrows you will have. So how do you really think about your mortality in a way that can make you really appreciate the life you have and make the most of the time you have? Consider more than reading an article about being death positive, create a vigil plan, write your eulogy or obituary, or plan your funeral. Making real plans, really talking it out with someone is going to have a much longer lasting effect than reading an article and forgetting it the moment you close it.
You can't take your life by the horns and live the best life possible until you recognize life really is short, and should not to be taken for granted.
How old were you when you realized you were not going to live forever?
You can't take it with you, or at least that is the saying.
We often use this saying when referring to money, the rich person who is stingy with money, or when we feel like treating ourselves to something. You can't take it with you!
Yet, even the earliest human graves have things that the living person used and loved buried with them. Tools they used from even primitive cultures where a similar tool would be difficult to create and a real loss to bury it with the dead person.
Ancient Egyptians to Vikings were buried with their most loved and used possessions, or things they expect to need in the afterlife. Pharaohs were entombed with statues of slaves to serve them in the afterlife, as well as expensive goods to be used. Their bodies carefully preserved to have use of when they returned to it.
We think of this practice as something ancient peoples did but not modern people. Yet, it is not uncommon for someone to be buried with a loved token, or even a large item. I have friends who were buried with paper cranes from our mutual friends memorial service.
As human beings we love things, we collect and covet things, we love them so deeply that for some of us, they are things we are simply not willing to let go, even after we die. There is of course certain things we need for survival, and things we collect to make life easier, tools we use for our life's work, and sentimental objects, all things that we care for as if they have their own sentience. These are, in modern times, the things most often taken with us as we are lowered in the Earth.
Why do we do this? I'm not trained (or conceited) enough to pretend I have all the answers to that. Perhaps, its a hope that the loved one can enjoy these things, or that the physical thing was so important to them that you simply can't separate the person from the thing. Maybe there is a deep feeling that the spirit of the person is somehow attached to the object, and in order for them to be whole in whatever happens after this life, they need it with their corporeal body.
The clothes worn by the body are chosen with equal care, so the corpse will be comfortable or look presentable or reflect their personality. I have been to a funeral that the deceased was buried in their motorcycle leathers and one in pajamas, plus one elderly woman who declared a week before her death she wanted to be buried in a blue dress.
Most modern religions don't believe that the physical body will go on after death like the Ancient Egyptians did, however the care of presentation is still agonized over. Will my friend be riding many motorcycles after his death that he needed to be buried in his leathers? Is the comfort of the corpse so important that their favorite pajama pants be worn? Are there many formal dances that body is going to that they are dressed in formal attire for the occasion? Does it matter? If the funeral is open casket then, yes, potentially the person wants to be presented they way they lived, or have their families see them a certain way for the last time.
In the end, as much as we like to separate ourselves from ancient and primitive cultures and ideas, we have a lot in common too.
Do you have something you want to be buried with? Is there an outfit you want to be buried in? Does your family know?
The new year is here, its the first full week of 2019, and you may have made some resolutions. The most commonly mentioned ones are typically losing weight and improving one's finances.
You are determined that 2019 is going to be your year: you are going to skip that extra drink and get up early for that trip to the gym... you are going to be more focused at work and present with your family... You are going to look at your phone less, and look people in the eye more... You are going to save for the future, while living today to the fullest... You are going to learn a new skill, finally read that book, and finish that project. This year is the year you make taking care of yourself a priority.
There is a good chance you made one of these, or similar resolutions in other years, but this year you are determined will be the year you get it together.
Let's think about why those resolutions didn't work before, and how you can achieve your goals this year. Perspective. Some of it is your perspective of other people, as social media makes it look like so many people have it together... even their "Pinterest Fail" posts are still funny, and are what great shareable content is made of. It is easy to get a distorted idea of what success is, and how much people are actually doing. Your feed is full of people doing all manner of things, such as getting promotions, pregnancy announcements, baby photos, their family vacations, and their kids successes. First off, that is a lot of people, and secondly, they are not sharing the monotony of their drive to work, or that there is person at work that is driving them to drink at night, or how their child/spouse/parent/friend is routinely undermining/insulting/belittling/ignoring them.
There is also the perspective that you have of your life, including the time you have to work on these things, and the tools you have at your disposal to accomplish them. For instance, let's say you have losing weight as a goal.. great! This can give you more energy to do more, help you sleep better, and be healthier overall. Let's start tomorrow, or after the weekend, or the holidays, or vacation, or.... Before you know it, its another New Year and you are making a new goal to lose that weight. The fact that there is always tomorrow to work on that, means it's really not that much of a priority to you... even if you really think it is. If you are putting off starting the process, then something else is a bigger priority.
How can you change your perspective, and create priorities out of things that are resolutions? How about writing your eulogy, or writing your partners eulogy, or pre-planning your funeral, or (my personal favorite), contacting me to help create your vigil plan! Well, this is a blog about death and grief right? What did you think I was going to suggest? Hear me out though... we all die. You will, and your partner will, and everyone else will. Your death and funeral will be attended by people who love you. At your funeral people will talk about what kind of person you were, as well as that hysterical Pinterest Fail you had that one time. Spending time thinking about, and planning these things, arguably the biggest event of your life, can help change your perspective. If you want freshly popped popcorn at your vigil (as my neighbor said he does), then maybe the joy of spending time with people over some good food, and watching bad movies is really your priority. Thinking about a casket that is extra wide, might encourage you to take an extra long walk before that movie though.
Thinking about, and even planning, the momentous event of your death is normal, and healthy, and truly does lead you to live a happier, healthier life. We spend countless amounts of time, energy, and money into life events such as planning weddings, or the birth of babies, but despite the fact that all of us will die one day, the thought of putting any time into planning it, is still taboo, unless your are terminally ill.
In my experience planning a vigil, or a funeral, brings a sense of calm and love that you might not expect... a sense of calm in the reality. So this year, resolve to take care of you first, because you can't pour from an empty cup, and finally accomplish those things you have been trying to do for years, by first planning your death.
What is your resolution this year?
The holidays are hard in the best of times. There is stress and overspending, overextending yourself and a million things to do, there is pressure to be merry and bright while acknowledging your own privilege. This time of the year is so frantic that we often see people who are not in the best health lose their fight to hang on. People are worn down and its easier to get sick for healthy people, and if you are nearing your end of life anyway the stress can be just too much for a person's body.
If you have lost someone close to the holidays, you now have to make it through every holiday for the rest of your life with the shadow of their loss looming over the festivities. Its okay to not be interested in celebrating for a year, or twenty years. Grief has no prescribed timeline. Even if you are working through your grief and the rest of the year you are doing well, the holidays are just hard.
Trying to be merry and bright in the face of trying to forge a new normal without your loved one and dealing with their anniversary of loss is an impossible task. The anniversary of loss is always hard, no matter the time of year it comes, it is hard. The date on the calendar is a dark hole that evokes memories of our lost loved ones, the good memories and the bad, while sucking the joy and color from life. Its okay to not find the same joy in the season you had before your loss, its okay for you to not be as merry and bright.
Your world has changed and taking the space to acknowledge that its not the same in the face of the world trying to be frantically joyful can make you want to retreat into yourself. Its okay to have a drastically different celebration than the one you traditionally had, you are forging a new normal everyday and sometimes a big change is the best way. Instead of trying to do the same thing with an obvious loss try changing things around. Change can not only help you acknowledge that things are different now, the loss of your loved one has altered tradition, but also help you move forward. The changing of location, the meal shared, or the decorations can reduce the hole left in your traditions by the loss of a loved one. You are not simply going on as if they will still be there to place the star on the top of the tree, or light the menorah, and feeling the loss all over when you have to do that task, but hanging a garland instead of getting a tree or getting a new menorah or changing its location is significant enough of a change that instead of feeling a hole where that person should be, you have created a new tradition. Something so different that your not just filling the gap of where your loved one should be, but forging something new.
Maybe you don't want to change anything and you just need the space to feel the loss in your routine for a year or more. You need to acknowledge that you are still grieving and its okay to grieve for as long as you need. Its okay to do it how you need to, even if that means not doing it at all. Its okay to even create a memorial out of your tradition for as long as you need.
As always, if you are unable to manage on your own, professional counseling has no shame and can be a great help in times of stress.
How have you dealt with loss during the holidays?
When we talk about death the inevitable question comes up, should we value length of time we have with our loved ones or quality of life?
No one can answer this question except you. Likely, you won't have an answer until you are nearing your end of life. You have to consider whether it is more important to be able to connect, communicate, and contribute until the end, or is your very presence what you want. This answer changes depending on your fears and your values. If you fear the end often you are going to want to have quantity but if you value the interactions you have as a healthy person you may be interested in quality.
Perhaps you are trying to make it to a wedding or a birth of a child. You might be willing to reduce your quality to extend quantity. You might be interested in getting the last few things ticked off your bucket list and be willing to sacrifice quantity to have that quality at the end.
There is no right answer. There is no way that is better for you. There is no answer that is universal and your family might be interested in having you lay low to have a longer time with you. They may want you to have that last adventure, but their desires for you are coming from their love for you, and in some ways selfishness. Often, you will have several different opinions that people are pushing at you, only you can know what you want here.
What we can do is work on letting go of the fear of death that we have while we are healthy. We need to look at what we want in our death and in our life to even be able to start to work on quality or quantity. When you are able to see, with the clarity of reflection on your life, and knowing we will all die one day, we can start to decide if quality or quantity is what we want.
Looking at our lives and deciding how we want to be remembered will help make this an easier decision. Do you want to be remembered as the matron and holding the new baby even as you slip away? Or do you want to be remembered as the adventurer climbing that mountain as your body begins to fail.
Our families are going to want what they think is best for us, it is, in the end, our decision and not theirs. If you are holding on and sacrificing quality for the birth of a child or other event you do need to face there will always be another event just around the corner. If you are willing to sacrifice time to climb that mountain, there will always be another mountain you want to climb. The cruelty and beauty of life is that there is an end. The lives of the people you love will continue to march on and you will miss things no matter how long you are able to hang on. There is always another adventure, or hike, or piece of art to make.
The only thing we can do is work through our fears of the end and decide, and reconsider as we age, what our best life and death is.
After helping plan a number of vigil plans I have noticed a theme.
People are afraid they are asking for too much. This is your death. Your family will want to do whatever they can, regardless of the difficulty.
These plans are for those last couple days of your life, when there is nothing left to do but wait, your family will appreciate your planning and have chores to do and clear instructions.
Have you ever sat vigil to a dying person who has had no plan? You sit awkwardly and look at each other. The religious members may sit in silent prayer while the secular members of the gathering are confused about what they should do. There could even be whispered arguments about what should be done, trying to do the right thing and still be respectful, it never is, of course.
Be selfish, let your End of Life Doula lead you to imagine what it will look like, and be selfish about what you want. Don't leave your family to guess. If ever selfishness is a kindness, it is now. Your family will appreciate having clear instructions, having a plan that they can follow without wondering what you might like better. Be specific, know the kind of flowers or candle scents or music. Don't leave your loved ones to wonder what they are supposed to do.
You are so loved in your life that your family will want to provide you exactly what you want as you die. You are important enough that your family will make your requests happen and they will not think that any requests are a burden.
What would you like in your vigil plan that you are afraid to ask for?
If you have ever known anyone who has suffered a long and painful terminal illness you may have experienced some relief after they have died. Finally their tortured body is at rest, their suffering has finally ceased.
If you have born witness to all the pain and suffering you may be struggling with a sense of relief with your grief. It can feel disloyal to feel anything but sorrow and yet, having watched the agony, especially if it was a long illness it can feel like a weight has been lifted. How do you reconcile the feelings of grief with feelings of relief?
First, know its totally normal to feel that way. You have also been suffering and with the end of their suffering yours, too, has been abated. Grief is messy and can come with a myriad of feelings including relief. You will likely be told platitudes that are meant to soothe like "At least they are no longer suffering", these can sting when you are thinking of how your own suffering has been lessened with the end of the life of someone you love. You may be experiencing something like survivor guilt, where you feel guilt to be the one who survived. Don't feel like you don't deserve to feel these things and if you need to talk to a professional counselor there is no shame.
If you were the caretaker of the dying individual than most of your days were taken up with the care of your loved one and being a caretaker is hard, really really hard. As a massage therapist, in my previous career, everyone wanted to one up my other clients as to who had the biggest knots or was the most stressed. The person who hands down was the tightest most stressed person I ever gave a massage to, was an elderly woman who had been the sole care giver to her husband who was in end stage Parkinson's disease. Her daughter had forced her out of the house for a massage, I couldn't make a dent. She was so worried that someone else wouldn't care for him right, she wouldn't leave his side. I only saw her once and I wondered how she was going to carry on after her husband died. Her whole life revolved around his care.
When death is sudden or illness is short, this experience of relief and therefore guilt isn't present, but when its so painful for such a long time, the end is welcomed by all to a degree. There is a difference, of course, when someone has had an illness for a long time and suddenly their condition worsens and they succumb. A long battle with constant debilitating pain and continuous loss of function is difficult for the caretaker. There is guilt for feeling like you, too, are suffering while watching your loved one suffer.
Relief within the context of grief can feel like a betrayal, to yourself and to your loved one. Grief is frequently referred to as a rollercoaster in the dark, this feeling is the same, some terrible turn you were not prepared for. You are allowed to feel whatever you feel, its okay to feel relief and sorrow.
Have you ever felt relief after loss?
You may have heard this term 'good death' get thrown around by people in the death and dying industry. You may be wondering what that means, all deaths are the end of a life, how could that ever be 'good'?
The answer is both obvious and not. A good death refers to when someone is fully prepared to die and their vigil is beautiful and healing for the surviving family.
I have known personally people who have had the elusive good death, the young girl who I named this website for had one. She was prepared, her family who was fully involved in her care while also giving her the autonomy to control her care before her 18th birthday. When it was obviously the end, her doctor wanted to try increasingly aggressive treatments to save her. She was tired and she was ready to let go. Already with a breathing tube, she could not talk but was conscious while the doctor talked to her mother across the bed. She started using sign language to enact her living will. He ignored her gestures so she kicked him. It still makes me smile to think back to her dying and still willing to literally kick her way out. She was allowed to die on her terms, the mechanical support that was assisting her to breathe was turned off and she was released from her corporeal body. She had written a poem to be included with her memorial service meant to soothe her family and friends, although 25 years later it still reduces me to tears.
A mutual friend also had Cystic Fibrosis. He did not have a good death. His death is one of the reasons I do this. He had had a lung transplant and although he got a few more years than he would have, he developed cancer and then some neurological issues. Ultimately he developed an infection that was medication resistant and his blood pressure dropped below levels that he could receive dialysis. He died scared and one of his last sentences was "Dad, I don't want to die". At his funeral his father wept on my shoulder reliving his last conscious moments that his son was scared and there was nothing left to do but watch him die.
Through these two stories we can look at the idea of a good death. There was significant grief from the loss of both people who were taken when they were far too young. One in her teens, prepared for the end and ready to make the journey on and one in his twenties, terrified of what the end meant. These could be the result gender, religion or a myriad of other reasons but at the end of life it comes down to fear or acceptance. When you are facing death you are, of course, concerned about how the survivors will cope without you as well as with your loss. If you are a parent, you are thinking about how your children will cope with the loss of a parent and if you are young, how your parents will carry on after losing a child. As humans we are community oriented and we all have those people we worry how they will handle going on after a significant loss.
How can we achieve the 'good death'? What can we change about our lives that the end won't mean terror and instead we can bravely move on to whatever the next journey has in store for us and also ease the grief of those left behind? This isn't something I can answer for everyone, it will be about your religious beliefs and your family dynamic and a thousand other factors. However, normalizing death will be a big part of achieving it. In our modern culture we have sanitized death and removed it from our everyday lives. Our elders are not dying in their homes, our homes are no longer multi-generational and we don't see the natural progression of life to its end. Death is taboo although it happens to us all, most of us have never witnessed someone's last breaths. None of us get out of this alive and most of us are scared of what the end will hold.
Lets open up about death, our fears, our beliefs, and our experiences with grief and loss. Lets plan our deaths so we can examine our own fears. Write your vigil and your eulogy. If you have a plan for your vigil and your funeral you can make a plan about how you want to live your life more fully. If you can look back on your life and see you have accomplished the important things in life you can find peace with the end.
Making a plan for your death, unless you are actively dying, means you have the opportunity to reflect on your life and the chance to create the life you are proud of when the end comes. Having the life you are proud of will help you have that good death. Making a vigil plan or writing a eulogy will help you focus on your priorities and be sure to achieve the things that are most important to you.
The author is not getting compensated for the following post.
Who doesn't love cake!?
I see all manner of death related articles etc., but a website has recently caught my eye and I think it is worth doing a review of here.
What is Cake? It is a social site dedicated to getting you ready for the unexpected. Its totally free to set up your account and share with the person or people you want to know your wishes.
You create an account and answer some questions they call 'Cake Cards' and it walks you through things you probably never gave any thought to as well as plenty you probably have considered but didn't want to really think about.
Cake walks you through things like, would you want a tree planted in your memory and what would you like done with your body after you die. It also covers things like whether you want your browser history erased and what to do with your social media accounts.
Under all the questions you have the option to create a note to clarify what you mean. For instance, yes I want a tree planted in my name, and in the note say the kind of tree.
I have filled out my own Cake account and given the password to my husband. Cake recommends creating a medical proxy and I have not done that, mostly because it requires 2 witnesses and who thinks about getting witnesses for a medical proxy when you are healthy? In the state of Virginia, where I live, my spouse is the default person to make decisions on my behalf if I am unable. Since he would be the one I would declare as my proxy it is redundant to create a new legal document. If you are single, however, this maybe something you want to do if, for example, you wouldn't want your parents or next of kin to make those decisions. Were you in an accident or had a catastrophic medical event and could not make your own decisions be sure the person who is making them is who you want and trust.
In the top right corner there is a 'Marketplace' link, this will bring you to a list of companies that provide everything from life insurance to eldercare. Perhaps the most important for the middle aged users are the password manager options. Once you have made the decisions about what will be done with your social media accounts and financial accounts someone will need those passwords to take care of them as needed.
Once you have answered your cake cards you simple share your login information with 1 or more people who you want to know your wishes and trust to take care of you in the event of your death.
Visit joincake.com to get started.
Tell me what you think about the cake cards.
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.