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DABDA

7/16/2023

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We have all heard of Elisabeth Kübler-Ross and the 5 stages of grieving, denial, anger, bargaining, depression, and finally acceptance (also called DABDA).  In the context of working with those who are grieving. Education says “We don’t use the five stages anymore”, but really, they never should have been used for grieving.  That’s not who she wrote them for.  Those five stages were meant for something called anticipatory grief, which is the experience of grief before a loss actually occurs.  It’s basically bracing for a death. Kübler-Ross observed people in a unit where patients had terminal diagnoses and her observations were written specifically about how those patients were responding and coping with their own end of life.  In that context, perhaps, it’s a cancer diagnosis or congenital heart failure or some other life limiting diagnosis that has been given to a person who thought they were going to live a much longer life.
While these ‘stages’ were never meant to be applied to all experiences of grief and certainly not prescriptive in nature, they resonated with people. The public read these 5 stages and said “Yes, I have had that when grieving and it applies” or “I can imagine going through those stages of grief when I lose a loved one”.  In the scientific community we may not use this model any longer as there are many grief theories out there, we however, cannot ignore it or Kübler-Ross’s work just as we cannot ignore Freud when learning about early psychology. Some of the criticism comes from the word stages when what she was describing was ‘experiences’. By the use of the word stages it makes it sound like a linear path through grief instead of the messy rollercoaster of emotions that are experienced.  A stage sounds like once experienced and worked through you move on to the next one and so on until you are no longer grieving.  That is ridiculous, we can experience deep sadness at the same time we are experiencing acceptance of the loss while bargaining with a higher power for a different reality and anger that we can’t change that the loss happened. Beyond that, there will never be a day when you are no longer grieving. You will never wake up one day and think, “I just don’t miss that person anymore, I’m done grieving”. 
This should have never been ascribed to what a person goes through after they have experienced a loss of a loved one.  These stages don’t fit that experience, and we shouldn’t try and force them to, all grief is not the same and the act of grieving your own life that is coming to an end prematurely is not the same as grieving a life lost of someone you loved.  Why then did Kübler-Ross’s book On Death and Dying (1969) become so popular? Because these stages resonate with people, a non-grieving person can imagine doing these things if they lost someone they loved, however, when it really happens there is no bargaining, there is no denial, accepting that they have died happens whether you want to or not upon seeing their body (a subject I will explore further in another post). A person who is not grieving can imagine refusing to accept that their person has died and shaking their fist at the sky and screaming at the universe, they can imagine begging whatever higher power they ascribe to, to please bring them back before slipping into a depression until finally acceptance of the loss comes and they find healing.  Those of us who work with the grieving and have experienced significant losses ourselves know, that’s just not how it goes.  
Limitations of this model are that the word stages makes it seem like it is a linear progression through these emotions, perhaps like a bell curve starting with a low level of denial, building into anger and peaking at bargaining with your maker to finally slipping down the other side of the bell into depression and finally bottoming out into acceptance.  Here’s the thing though, grief isn’t linear.  It’s chaotic and messy, it doesn’t fit into neat stages, but is instead like trying to traverse a mine field that you have no idea how far until relative safety and then, sometimes when you think you are in a safe zone you take a confident step only to find a bomb.  
To begin, let’s call the 5 stages of grief, ‘some of the experiences of anticipatory grief’.  There are many experiences that happen to those who have been given a terminal diagnosis and not all of them are negative.  I would also like to separate these experiences into two categories, the fight experiences and the peace experiences.  Denial, anger and bargaining would be within the fight experiences while depression and acceptance are part of the peace experiences.  There is a model of grief that was designed for those who were grieving after a loss called the dual process model (Stroebe & Schute), in this model it acknowledges that there is deep sadness at times, where a person is unable to to do much but think about their personal loss and how it impacts their life, and then there is the process of continuing with the act of living, finding meaning in life again.  This fight/peace experience is much like that, where people are oscillating between fighting for their own life and finding peace with their upcoming death.  At times you are raging against the unfairness of dying with so much left to be done and at times you acknowledge that there is nothing to change it and instead enjoy what is left with the people you love.  As people progress in their illness, they are less in the fight experience and more in the peace experience as is expected.  I believe this was the reason that Kübler-Ross put her stages in the order she did, because most people are not accepting of the diagnosis in the beginning as well as most people are not denying that they are dying as they approach death.  While the order is intentional, she did not intend for them to be fully linear, after denial comes anger once you are done being angry you start bargaining.  If given much thought at all, it is clear that a person who is denying they are dying is both angry and bargaining, its all at once not stages, just as a person can be both depressed and accepting.  
People are complex, and grief more so.  There is no subscription of emotions that a person will experience in any semblance of predictable order as they are dying or as they are grieving.  Stop using the 5 stages as a guideline of if you are grieving ‘right’ or expecting your grieving patient to experience those stages, it was not written for those who are grieving a loss. 

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When someone is grieving

3/28/2023

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Have you ever walked up to someone who is grieving and all you can think to say is "How are you doing?" and then the person says "How do you think? Terrible!"?  Or maybe you were the person hurting and, in your head, you screamed at them about how awful everything is now and what a stupid question to ask.  Even when we say it in our most empathetic tones and cadence, it's received poorly. 
We say, "How are you doing?" because it's part of our everyday speech and when someone is in obvious pain it's hard to think of what we should be saying.  This isn't an everyday situation though and while you know you mean it in the most empathetic and caring way possible, to the ears of the person who is hurt, you are asking them to finish the normal script and they can't, or if they do it's a lie said in a flat tone that communicates how not 'fine' they are.  In most cases in everyday interactions the answer to the question of "How are you?" is "Good" or "Fine" and when a person clearly can't answer in that normal script regardless of if they know that's not how you mean it, it feels like an accusation of not 'doing fine'. 
Instead, try "How are you coping?", you are acknowledging that they are not expected to be okay, good, or fine and it communicates that you care while also asking what you really want to know.  Are they managing this tragedy? Is there something that they need?  Is there something that you can help with?  It takes practice to change what you say, and you will forget on occasion and possibly be met with harsh tones, glares or flat answers, but stay calm, apologize for being insensitive, and reword the question to reflect what you are really asking. 
Asking about coping validates the difficulty of the situation and takes all the pressure off the individual to be okay, it isn't just a script that has an expected answer, and further, it promotes a more detailed answer than one word.  In my experience, I have seen a physical deflation, like they have been waiting to defend their mental health but find that they are suddenly validated by doing well.  That what is happening is really hard and all they can be expected to do is try to cope from one minute to the next.  All the pressure to be 'doing good' or 'fine' is eliminated and they feel comforted by your concern.  
The second thing we tend to say after "How are you doing?" is "Let me know if there is anything I can do to help", so instead of providing comfort you have suggested that the person should be 'good' and then given them responsibilities to help you feel like you are being a good friend.  By asking about coping can lead to a conversation about the challenges that they are struggling with and help you to identify ways that you can help.  The responsibility for delegating tasks has been removed, as they can just vent how difficult the situation is and you can identify areas that need assistance during that conversation and simply offer to take the task off their list of things to manage.  If you are very close, it can be things like making sure the laundry is done at home and the person has clean clothes to change into.  Or if you are not as close try providing a gift card to a local restaurant so that dinner is taken care of for a day or two.  Listening to the answer of how they are coping can identify what really needs attention instead of closing off communication from the start with "How are you doing?"
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Helpless, Hopeless.  Looking for Life's Exit.

7/12/2020

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​“Sign here. You’re going to inpatient psych.”
 
With that stern, autocratic and controlling statement, I began my interaction with a certain woman in the Emergency Department. Let’s call her Audrey. I was the psychologist and she was my patient. I already knew Audrey from past encounters. And I knew that she was present on this particular evening because of her own actions. Audrey intended to die by means of an overdose of her psychiatric medication. Her life was burdened by an abusive husband, economic hardship, and feelings of worthlessness and hopelessness, all in the context of neurochemically-based mood changes that were out of her control. I knew Audrey from prior encounters on the inpatient psychiatric ward, including a period of three weeks during which her depression was unremitting. The psychiatrist was aggressively trying different pharmacologic treatments with her. I was having limited success with a cognitive-behavioral therapy approach.
 
Audrey’s two sons, one age seventeen and the other two years younger visited her in the hospital. They cried during the visit, barely able to comprehend the purpose of a hospital ward that looked more like a hotel than a medical facility. But unlike a hotel, the front door did not open without a staff member’s badge or through some action by a nurse behind a thick transparent pane. “Mom, please don’t do anything like this again,” they pleaded.
 
I saw Audrey begin to cry again. Was she remorseful for causing her sons such anguish? Or was she again feeling trapped in a life that seemed to be a hopeless wreck, in which she could not live and which she also seemed to be incapable of ending?
 
I’ve met many people whom I judged to be at great risk of suicide. Some had enduring risk factors. Some people were suicidal only under specific circumstances, such as when they were drunk. Most could be safely released the following day when they were sober. They seemed to be different people when intoxicated, certainly not suicidal, and sometimes had no recollection of what they said and did while under the influence of alcohol. Their discharge instructions would include advice to avoid alcohol. They did not outwardly disagree with my recommendation. Nevertheless, months later I sometimes saw a familiar name in the newspaper, with the innocuous phrase “Died suddenly at home” in the obituary. I would think, “I know exactly what happened.” 
 
Suicide risk assessments are best completed in a hospital emergency department. The emergency department is a less than ideal setting for several reasons. But it does have the benefit of being a setting that can control behavior and prevent a person at great danger from leaving. And there are security personnel to maintain safety.
 
However, one of the most imminently dangerous people I ever evaluated came to my attention as a voluntary walk-in to the admissions department of a private psychiatric hospital. His father was with him. It was a Sunday, and I was the only professional in the department. There was no security department. This young man clearly expressed his suicidal intent. He told me that he had a lethal plan and a day picked out on which to end his life. But he would not tell me how or when he would kill himself. He added that he wanted to have his organs harvested for transplant to help other people. I advised him that some methods of suicide make a body’s tissues unsuitable for donation. He assured me that he was taking that issue into consideration.
 
But he refused my offer of voluntary admission. And, not being an emergency department, I could not get a physician’s order from the same hospital to admit him involuntarily. I was being thwarted by some ethical-legal issues. The key to resolving this case satisfactorily, that is, without releasing a person in extreme danger back into the painful world, hinged first on my ability to maintain my own clear thinking. “OH MY GOD,” I thought. “THIS GUY IS IMMINENTLY SUICIDAL!”
 
I had been to a high school reunion some years earlier. One of my former classmates asked me, “Have you seen it all at this point? I mean, does anything surprise you anymore?” I answered him, in all seriousness, “Every day is different.”
 
Now, on this day, I needed to stifle my own horror at the idea of this young man calling the paramedics and then killing himself before they could arrive. It was his intention that the ambulance crew would encounter a body that was beyond resuscitation but was yet suitable for the harvesting of parts. I had to stifle my fear of death and my horror over his plan. I had to keep my own feelings under control.
 
I left the young man in the consultation room with his father. I could not involuntarily admit him to the hospital where we were. But, in my capacity as a psychologist I could have him brought involuntarily to a nearby emergency department. I called 9-1-1 and presented the situation. I then completed the Psychologist’s Request for Examination that would empower the state police to take him into custody. I returned to the consultation room and informed the young man that he would be transferred to the nearby community hospital’s emergency department. “But I don’t agree,” he said. I responded, “I have taken that choice away from you.” If he bolted from the room at that point, I could not have stopped him. But he stayed. And when the state police arrived and I again explained the situation, the young man calmly walked outside with them.
 
Two weeks later, the head of the admissions department informed me of a telephone conversation he had with the father of the young man. “He’s home. He’s better,” I was told. And the father wanted to thank me for remaining cool-headed during this crisis. That was my last contact with that case so I cannot report on the long-term outcome.
 
The case of Audrey is a little different. She was my patient in the outpatient clinic, and she received medication prescribed by our psychiatrist. Then there was a period of weeks when she did not keep appointments. She also stopped taking her medication. Audrey kept an appointment with me, and I was immediately alarmed. She denied suicidal thinking, but I was not convinced of her safety. However, I didn’t have the justification needed to have her admitted involuntarily. The psychiatrist saw her as well. We agreed that Audrey did not seem well. Before I could see Audrey for her third outpatient visit of the week, the psychiatrist came into my office. “We were both right,” she said. “Audrey is in the emergency department now with serious injuries. She’s about to transfer to the inpatient unit.” Audrey had packed an overnight bag and left a note on top of it. The note said “If this works, please give my cat to Kimmy. If it doesn’t work, bring this bag to the hospital.”
 
I entered Audrey’s room on the inpatient psychiatric unit. I found her sitting on her bed, her arms heavily bandaged. The overnight bag was on the floor. I looked at the overnight bag, then at Audrey. “I guess it didn’t work,” I said to her. She smirked and just said “No.” Her suicide attempt had failed, and she was not yet thinking that this was a good thing.
 
Audrey was eventually discharged from inpatient care and attended a therapeutic day program. After some weeks she was again in my office in the outpatient clinic. “Let’s think about this,” I said. “What are we missing? We’ve been treating this as an issue of recurrent major depression. Maybe we need to put more emphasis on your trauma history.”
 
Audrey and I worked together to devise the conditions that would make her life worth living. We worked together, that is, until the time came for my family’s move from Connecticut to Florida. I made certain that a trusted and competent colleague would continue to work with Audrey. And I asked Audrey to please always know that I want her to live and to be happy.
 
In years past I heard people older than me say that time passes more quickly with advancing years. And so, it is hard to conceive that my last conversation with Audrey occurred more than six years ago. I still want her to know that I wish for her to live and to be happy.
 
I wasn’t difficult for Audrey to find, just a few weeks ago. She wanted me to know that she is about to move to another state to be with her new romantic partner, that she is part way through a college degree, that she is on the Dean’s List studying psychology, and that she has, in her words, “Big plans for the future! You’ve seen me at my worst and so I want you to know this.” It’s not often that I get news that makes my heart sing.
 
We defeated death in Audrey’s case. I asked her to keep me informed of her progress. And I gave her my favorite closing:
 
Be well. Stay strong.
 
 
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 posttraumatic stress. He is a frequent speaker in the field of rare diseases. His book Great Necessities is available on Amazon.com.
 
07-11-2020

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End of Life Doula in Long Term Care Facilities

7/6/2020

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Often there is no choice but to put a loved one in a long term care facility when we are unable to care for them at home.  We know that our loved ones will be spending the rest of their lives there.  This is the care and support they need until they die.  Should part of the care that is given be end of life planning?

Nursing homes and long term care facilities take care of the physical and medical planning of end of life, advanced directives, DNR orders, etc. but what about the emotional side of end of life planning?  When we know that our loved ones are going to live out their days at a nursing facility shouldn't part of the services offered be vigil planning?  Making the most of the time they have left and ensuring whenever the time comes it is everything that they want in their final days?  

Early planning, in my opinion, is especially important for those who have cognitive decline.  Getting a personalized plan while the individual is still able to make decisions about what they want and provide insight can be such a gift to the family when the time comes.   The family can feel like they have a piece of their loved one back even as they slip away.  

Long term care facilities with advanced nursing care offer the best support and lifestyle as we age and decline when it is no longer feasible to stay home, but what about vigils, life review, and legacy projects?  Is there a gap that can be filled by an End of Life Doula being added to the staff?  

During the COVID-19 pandemic the benefits of having residents of a long term care facility having access to an on staff end of life doula would be immeasurable.  If part of the care you received was vigil planning, life review, and legacy projects the idea that a virus that is especially cruel to the elderly and those in poor health could have provided comfort to the residents and their families.  Knowing even if the family couldn't be present for the final days and last breath that their end of life plan was still being followed.  

Hospices are more and more frequently offering doulas as part of their volunteer services, but the average amount of time people are getting hospice care is around two and a half months, for a volunteer this equates to about 10 visits and since there are few doula volunteers they are often not called in until it is time to sit vigil.  This doesn't give the doula enough time to really be effective, most people need a few visits to get comfortable before they really start opening up and getting the most out of the services a doula offers.  

If doulas were on staff at long term care facilities, then they could help plan a beautiful vigil, do a thorough life review and provide grief support to the family who, in a perfect world, would have built a rapport with the on staff doula.  

Is it possible with the rise in doulas and their popularity we will start to see them on staff at long term care facilities?  What about at hospitals to work alongside the palliative care and spiritual care teams for sudden deaths as well as terminal diagnoses?  
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Suicide

7/16/2019

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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.
 ​

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Have That Conversation

7/3/2019

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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?
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A Burden or a Gift?

7/1/2019

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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.  
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Say Their Name

6/8/2019

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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.


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When Grief is Waiting at Every Turn

5/28/2019

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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?
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The first celebrations after loss

5/14/2019

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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.  


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    Author

    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 I work in family services for an organ procurement organization (organ donation)  I hold a bachelors in psychology as well as a masters in thanatology (the study of grief and bereavement) I am not a professional counselor or psychologist and all advice given should be treated as advice from a friend.  

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