Bereavement Support Resources
CurePSP is here for you, from time of diagnosis with PSP, CBD or MSA, through end of life and beyond.
Grief is a very personal and complex journey, shaped by many beliefs, emotions and experiences. We want to offer our support, and perhaps some guidance, through this transition in your life, after someone with PSP, CBD or MSA passes away.
After The Loss: A Bereavement Support Group for Care Partners
Meeting Times: 3rd Tuesday of each month at 2:00 pm EDT
Registration Link: https://us02web.zoom.us/meeting/register
Meeting Tel: +1 646 558 8656 Meeting ID: 880 1661 4170
Please accept our deepest condolences and remember that the CurePSP team is always here for you and your family. It is our honor and privilege to serve and support you.
Life After Loss Journal
We are proud to bring you the Life After Loss: A Journal for Navigating the Bereavement Journey. This signature publication features 30 pages on understanding grief, mourning, and bereavement along with shared journeys in grief from our community.
Articles and Quotations
“Grief” by Gwen Flowers
I had my own notion of grief.
I thought it was the sad time
That followed the death of someone you love.
And you had to push through it
To get to the other side.
But I’m learning there is no other side.
There is no pushing through.
There is absorption.
And grief is not something you complete
But rather, you endure.
Grief is not a task to finish
And move on,
But an element of yourself –
An alteration of your being.
A new way of seeing.
A new dimension of self.
Elisabeth Kubler-Ross’s Five Stages of Grief
The grieving process is unique to each individual, and progresses in steps that are not necessarily sequential or linear. Nevertheless, each person is likely to pass through similar phases of grief and to experience common issues and emotions. In 1969, Elisabeth Kubler-Ross was the first of many subsequent theorists to position a framework for the stages of grief. Her theory is comprised of five stages: Denial, Anger, Bargaining, Depression and Acceptance.
Denial – This involves denying or ignoring death when it’s close. It can happen in a complete sense. (“There’s no way I’m dying”) or a partial sense (“I have cancer, but it’s no big deal”). Denial is basically your ego taking a defensive attitude. Your mind tries to find a way to maintain your well-being, even though this is a situation where it’s powerless.
Anger – Anger is an emotion that comes up when we have to face an obstacle. After getting terrible news, it’s common for our bodies to try to solve things through anger. It can have a lot of victims or targets, including yourself, your doctors, or even God.
Bargaining – Once you see that anger can’t solve the problem, that’s when bargaining will happen. You desperately ask fate or some divinity to make death go away. It’s quite common for people to become “docile” out of a hope that they’ll live longer by being good. For example, they’ll follow their medical prescriptions to a T.
Depression – Depression shows up when an illness gets worse, or when the awful reality becomes clear. You fall into a serious depression because you feel deeply powerless. However, this deep sadness means you’ll waste fewer resources on an unsolvable problem.
Acceptance – Once you’ve left behind the feeling of powerlessness, you move on to a much less intense, much more neutral state of mind. But that doesn’t mean you don’t still have your moments. When you’re in the acceptance stage, you internalize everything that’s happened and lift your head up and look toward the future. You may also start to positively reinterpret the meaning of the loss, without blaming anyone.
A more recent theory, The Grief Cycle, posits the emotions of grief in a dynamic circle, rather than in “stages” as follows:
Shock – Numbness, disbelief, inability to “think straight”
Protest – Acknowledging the deep sorrow; consequently feeling anger, guilt, sadness, fear of what is next, yearning
Feeling of Disorganization – Depression, loneliness, anxiety, confusion (perhaps because you feel.relief that the suffering has ended not only for the one you cared for, but for yourself as well), loss of identity, vulnerability
Reorganization and Redefining of Self – Gradual return to “normal” functioning, new habits and routines, but still feeling “not quite right”
William Worden’s Four Tasks of Grief
Excerpted from his book Grief Counseling and Grief Therapy
Worden suggests there are four tasks to be accomplished in order for the grieving and mourning processes to be completed. The model is a flexible one and can be adapted to any individual’s situation. There is – grief not being linear – no specific order for completion, and it is possible to move backwards and forwards between the tasks. Nor does Worden posit a timeline for completion, going as far as acknowledging that it may be necessary to revisit specific tasks over the course of a lifetime.
Let’s take a look at each of the four tasks in detail.
Task 1: Accepting the reality of the loss
The first task – both simple and complex – involves coming to terms with the end of the person’s life. It is not uncommon, following a loss, to experience shock or disbelief and so -in an attempt to avoid the pain -we may pretend that the death hasn’t really happened. We might expect our loved one to walk through the door, or to be on the other end of the phone when it rings. The first and simplest ways of accepting the reality of the loss include going through the rituals of the funeral and mourning, or speaking and thinking about the person in the past-tense.
On a more complex level, there is an acceptance of the reality of the significance of the loss. For example -though we may have begun to speak about someone in the past tense -we might downplay the significance of our relationship with that person, thereby denying the impact the loss is having. This task is not fully accomplished until we accept the depth of the relationship and confront the full impact of the loss.
Task 2: Working through pain and grief
Grief brings up with many emotions; from sadness to loneliness, despair to emptiness, anger or guilt; blame or shame; and countless others. Emotional turmoil not being a one-size-fits-all model, Worden acknowledges that each loss means working through that range of emotions particular to the individual. The danger lies in disavowing our feelings, thereby avoiding them. This can occur for many reasons.
Perhaps the feelings are so intense they become intolerable, or maybe our lives have been such that we haven’t yet learned how to properly process our feelings. This danger can be exacerbated by society’s discomfort with the feelings that accompany grief, perhaps making us feel like we shouldn’t acknowledge difficult emotions. Denying – or being denied – our feelings in this way means this task goes unfinished.
Whatever emotions may be present, it is important to acknowledge, talk about, and understand them. We must be patient, allowing ourselves to experience all of these feelings in order to properly process them. We should, Worden states, express – rather than avoid – these emotions. Being open about them, we will be better able to work them through.
Task 3: Adjusting to the new environment
The third task involves adjusting to an altered environment, one from which the loved one is now gone. This task can mean different things to people depending on the relationship with the person who has died, as well as the roles impacted by the loss. This readjustment happens over an extended period of time and may require several different types of adjustment; internal, external, and spiritual.
For example, a widow or widower may need to learn a new array of skills; ranging from bill paying, cooking, or taking care of the home. This aspect of the task takes into account barriers to grief that are tangible and not just emotional; such as finances, companionship, or child care arrangements. There may be other external, environmental changes, such as living alone, or doing things alone. There may be internal changes; for example, the more difficult task of redefining our identity now that the other person is gone.
This task can also mean adjusting to a new spiritual environment, which may have been altered by the experience of death. Adjustments may occur as we grapple with existential questions about purpose and meaning without the other person in our life.
Task 4: Finding a connection with the deceased while moving forward with life
This last task can take a long time and be one of the most difficult to accomplish. This task includes finding an ongoing and appropriate emotional connection with the person who has died, that at the same time allows us to move on with life. Again this task can mean different things to different people, Worden lays out a general template for its completion. We must allow space for thoughts and memories of the deceased, while at the same time· engaging in activities that are meaningful to us. This can include finding new activities that are enjoyable to us, or finding new relationships.
For Worden, not to accomplish this task is not to live. Life did not stop when the person died and it is important we continue to live our lives with a sense of purpose and meaning. Though the relationship with those we have lost will continue to evolve, they will always – through the emotional connection established – be invited to remain a part of our lives.
We can’t change the fact that our loved ones have died, but we do have a choice in how we respond to their death. Initially it seems appropriate to choose to stay wrapped up in sorrow which may be the strongest, most tangible connection we have to our loved one. By embracing the overwhelming pain we will eventually learn from it. Then, when we are· ready, we can choose to find a new way forward in life whilst integrating the profound love we feel for our loved one. By maintaining an emotional connection with the past, grounding ourselves in the present, yet also keeping an eye on the future,, we can begin to discover what matters most to us. By inviting more of this into our lives we can eventually find our way back to joy and happiness.
Ten Stages of Grief
The ten stages listed here are fairly common experiences for people in grief. It should be understood, however, that grief is fluid, and most people do not begin with Stage 1 and proceed in an orderly fashion to Stage 10. There is a great deal of movement among and within the stages. Often the bereaved will comment that after a week or two of “progress,” they have reverted back to the beginnings, or “square one.” It is important to remember that grief contains the emotional illusion of regression when, in fact, movement is always forward. At the worst, one is merely standing still. As long as the grieving process is not diluted or interrupted, there is progress.
- Shock – The shock of death is to be expected even after a long terminal illness and months of anticipatory grief. People often describe the first few weeks of grief as having been lived on “auto-pilot.” There is very little actual memory of specific details, merely the knowledge that one did what had to be done. Shock usually wears off after five or six weeks, but may last much longer, depending on the person’s skill at self-protection from painful feelings.
- Emotional Release – It is not uncommon to see intense emotional release at the time of the death, and then have it seem to “dry up” for a number of weeks. When the shock finally dissipates, the bereaved will often find strong emotions such as anger, fear, remorse. and loneliness. Lives are reviewed during this period, and people are amazed to discover the degree of dependence they felt for the person who died. This can lead to loss of self-esteem and perhaps feelings of inadequacy.
- Depression – Depression takes the emotions mentioned above and intensifies them, adding feelings of helplessness and hopelessness. The bereaved will complain of “not feeling” their loved one close to them anymore, or wanting “to be with” him/her. Family or friends may fear that the bereaved person is or could become suicidal. The bereaved will usually express serious depression as: “I won’t do anything to myself, but if death comes for me tonight, I won’t fight “
- Physical Symptoms of Distress – This is a very common phenomenon, especially among children. If the deceased died of a heart attack, the survivor(s) may experience tightness in the chest, pain radiating to the jaw and down the left arm, and other symptoms displayed by the deceased. One woman, whose fiancé was murdered by a gunshot to the face, developed a persistent sore on her face. When it was pointed out to her that the sore was the mirror reflection of the entry wound (i.e. on the opposite cheek), the sore healed and has not recurred.
- Anxiety – The bereaved experience vivid dreams, waking and sleeping, in which they see and/or hear their loved one. There is also spiritual anxiety expressed as: “Where is my loved one now?” “Is he/she happy?” “How can he/she be at peace knowing I am suffering so much?” “Will we be reunited when I die?” There is also the fear that the anger being felt toward God will bring about punishment in the form of additional losses. Many experience deep anxiety over the possibility of “forgetting” their loved one, and will express concern that they can no longer recall how the person smiled or how his or her voice sounded.
- Hostility – Anger usually surfaces in the sixth to eighth week after the This rage is sometimes random, sometimes specific. God, medical professionals, clergy, and the deceased are frequent targets. Usually the individual is confused by the intensity of the anger, seeing it as inappropriate, but feels unable to defuse it. Aggression therapy is frequently useful at this point.
- Guilt – Guilt is sometimes real, often imaginary or exaggerated, but should always be taken with great seriousness. Death amplifies whatever problems existed in the relationship. Little issues that were virtually ignored in life are now insurmountable obstacles for the “shoulds” seem to rule the world of the bereaved: “I should have done this” “I should not have done that.” Rational explanations may soothe for a time, but usually the guilt will return until a resolution is achieved.
- Fear – Fear wears many faces with the There may be a fear of sleeping in the same bed or room. There may be a fear of leaving the house or staying in it. People are afraid of the aloneness which comes after death, and they are also afraid of beginning new relationships, however platonic these may be. There is the fear of never knowing joy again, or not being able to laugh without guilt. The act of living becomes fearful for the person who feels so lost without his/her loved one, and each day is a burden to be endured. As one man said: “I can only go on because each day I live brings me one day closer to her.”
- Healing of Memories – The bereaved move back and forth between good memories and At times it seems there is a need for self-punishment, and so all the negative aspects of the relationship are resurrected and relived. The happier moments often seem to be too painful. It may take many months before these can be faced, but there is healing in remembering. As the memories become less painful, there is an ability to begin to face the world once more.
- Acceptance – There is a difference between accepting the reality of the death, thereby “letting go,” and “forgetting the person who has died.” As with the healing of any serious wound, there will always be a scar to remind one of the injuries. With time will come a lessening of the pain until finally the injury can be touched, remembered and accepted as a new part of the life being liv This acceptance may take two years or more to achieve, depending on the depth of emotional investment one made in the relationship with the deceased.
Excerpted from www.McLeanCare.org, Simsbury, CT
When Grieving, It’s Not Unusual To…
- Feel that the loss is not real and that it did not really happen
- Feel a sense of panic or think you’re losing your mind
- Cry at unexpected times
- Feel tightness in the throat, a heaviness in the chest or a lump in the stomach
- Lose your appetite or be unable to eat
- Wander aimlessly, forget in the middle of a sentence, neglect to finish tasks, feel restless, look for activity, but be unable to concentrate
- Have an intense preoccupation with the life of the deceased
- Feel angry at the loved one for having left you
- Sense a presence or a voice, or see the face of the loved one
- Feel the need to take care of others who feel uncomfortable around you
- Need to tell and retell things about your loved one and the death
- Keep asking, “Why?”
- Say to yourself, “If only I had…”
- Have mood changes over slight things
- Feel guilty or angry over incidents that may or may not have occurred in your relationship with the deceased
- Have feelings of irritability and hostility towards others
- Feel depressed
- Feel able to cope but then fall back again
All of these reactions are natural and normal. Know that you are not alone in having them.
Excerpted from an article by Ruth Eiseman from www.TheCompassionate Friends.org
The accepted theory, belief, or concept of an orderly progression of grief stages is a misnomer. Emotions of grief are not orderly – they crisscross, swirl, change, and come and go as depicted in the diagram below.
Diagram created and designed by Kay Bruner, Licensed Professional Counselor.
Help Through Grief
- Be patient with yourself. Do not compare yourself to others. Go through the mourning process at your own pace.
- Admit you are hurting and go with the pain.
- Apply cold or heat to your body, whichever feels best.
- Ask for and accept help.
- Talk to others.
- Face the loss.
- Stop asking “Why?” and ask “What will I do now?”
- Recognize that a bad day does not mean that all is lost.
- Keep to a routine.
- Introduce pleasant changes in your life.
- Know that you will survive.
- Take care of something alive, such as a pet or a plant.
- Schedule activities to help yourself get through weekends and holidays.
- Find someone who needs your help.
- Accept your feelings as part of the normal grief reaction.
- Postpone major decisions whenever possible.
- Do something you enjoy doing.
- Write in a journal.
- Be around people.
- Schedule time alone.
- Do not overdo.
- Eat regularly.
Excerpted from Bereavement and Support by Marylou Hughes, Taylor & Francis, 1995
What Do We Need During Grief?
Time – Time alone and time with others whom you trust and who will listen when you need to talk. It may take months and years of time to feel and understand the feelings that go along with loss.
Rest, Relaxation, Exercise, Nourishment, Diversion – You may need extra amounts of things you needed before. Hot baths, afternoon naps, a trip, a “cause” to work to help others – any of these things may give you a lift. Grief is an exhausting emotional process. You need to replenish yourself. Do what feels healing to you and what connects you to the people and things you love.
Security – Try to reduce or find help for financial or other stresses in your life. Allow yourself to be close to those you trust. Getting back into a routine helps. You may need to allow yourself to do things at your own pace.
Hope – You may find hope and comfort from those who have experienced a similar loss. Knowing some things that helped them and realizing that they have recovered and that time does help may give you some hope that sometime in the future your grief will be less raw and painful.
Caring – Try to allow yourself to accept the expressions of caring from others even though the gestures may be uneasy and awkward. Helping a friend or relative also suffering the same loss may bring a feeling of closeness with that person.
Goals – For a while, it will seem that much of life is without meaning. At times like these, small goals are helpful. Something to look forward to, like playing tennis with a friend next week, a movie tomorrow night, or a trip next month helps you get through the time in the immediate future. Living one day at a time is a rule of thumb. At first, don’t be surprised if your enjoyment of these activities isn’t the same. This is normal. As time passes, you may need to work on some long-range goals to give some structure and direction to your life. You may need guidance or counseling to help with this.
Small Pleasures – Do not underestimate the healing effects of small pleasures. Sunsets, a walk in the woods, a favorite food – all are small steps towards regaining your pleasure in life itself.
Permission to Backslide – Sometimes after a period of feeling good, we find ourselves back in the old feelings of extreme sadness, despair, or anger. This is often the nature of grief, up and down, and it may happen over and over for a time. It happens because as humans, we cannot take in all of the pain and the meaning of death at once. So we let in a little at a time.
Drugs Are Not Helpful – Even medication used to help people get through periods of shock under a physician’s guidance may prolong and delay the necessary process of grieving. We cannot prevent or cure grief. The only way out is to live through it.
Suggestions For Helping Yourself During Grief
- Find someone to talk with. You may want to visit with a pastor, rabbi, therapist, support group, or good friend who is a good listener and will give you the opportunity to express how you’re feeling about the death of your loved one without giving unwanted advice.
- Feel your feelings instead of avoiding them. Feelings of sadness, anger, and depression are normal and should be honored. Many people make the mistake of busying themselves in their jobs, families, or educational pursuits as a means of “stuffing” their emotions. Others go to great lengths to avoid tears so that they may appear “strong” to their friends or loved ones. Although such approaches may appear to give temporary relief, they often lead to unintended consequences such as prolonged depression or various physical ailments. It’s been said that grief is like passing through a dark tunnel. You can’t go over or under it, nor can you go around. A grief support group can be a good place to feel your feelings as you talk about the death of your loved one and what your relationship with them meant to you.
- As much as possible, continue to maintain a normal schedule. Set the alarm clock so that you get out of bed by a certain time. Attend to your personal needs such as eating healthy meals, taking a shower, getting dressed, and getting out of the house at least once a day.
- Treat yourself. Try and think of things you like doing, such as going out to a movie or to dinner. If possible, call a friend for companionship. Avoid the natural tendency to isolate yourself.
- Give yourself time. The grief work you’re doing is important, and you need not be on anyone’s time table but your own. Remember, this pain won’t last forever.
Types of Grief
Experienced by communities or societies
Felt prior to a loss, often associated with loss of a loved one due to terminal illness
Can be related to the unknown (e.g., what will happen, when will it happen, how will it happen?)
Builds up over a period of time, likely due to a number of deaths, losses, life events, etc.
Delayed Grief – when reactions and emotions in response to death are postponed to a later time.
Unresolved Grief & Ambiguous Loss
Event or situation of unclear loss that has no closure
Can lead to another form of grief: complicated grief
www.Eterneva.com, Boss, 199, 2006, 2007
7 Strategies for Managing Grief During The Holiday Season
- Do what feels right for you and don’t be afraid to make changes. Give yourself permission to say no to at least some of your traditional activities and spend the holidays in whatever way seems most nurturing for where you are emotional. Talking to someone you trust may help sort out what feels right for you.
- Allow yourself to change the plans you’ve made if they don’t feel right when the time comes to do them. Don’t worry about hurting other people’s feelings. Either they’ll understand or they won’t, but when you’re grieving you must do whatever you can to care for yourself. You’ll be modeling healthy behavior for grieving, and others may learn from your example. It is perfectly alright to choose to be alone.
- Talk about the person who died. When you talk about your loved one others will get the message that it’s ok to do so, and they may join in and share memories of that person. Such sharing can be comforting and healing. If you decide to send out greeting cards, you may want to enclose a funeral card for those who may not be aware of your loss.
- Don’t pressure yourself to put on a “happy face.” Many people worry that they’ll bring others down if they’re honest about their emotions of grief. Talking about your grief may be the most helpful thing you can do for yourself during the holiday season. You may need to be selective about the people with whom you’re this honest.
- Know that your energy will be less than normal. Mourners often feel tired from the hard work of their grieving. Remember and respect that you have fewer reserves to do all the usual holiday things.
- Do all you can to reduce stress. Holidays seem to present endless opportunities for stress. Try to stay in tune with your “stress alerts” and respect them by saying no to possible stressful situations or activities. If you decide to exchange gifts, make a list well in advance so that during your “good days” you can get your shopping done quickly with little confusion.
- Engage in holiday rituals to remember your loved one. Attend a community service, create a memory book, light a candle in honor of your absent loved one, make your loved one’s favorite dish, invite friends and family to your home to share memories of that person, etc.
Excerpted from the Brattleboro, VT Area Hospice Bereavement Newsletter, Dec 2017 and Hospice Outreach, Inc., Fall River Massachusetts
“Grief and gratitude are kindred souls, each pointing to the beauty of what is transient and given to us by grace.” – Patricia Campbell Carson (letter to a friend)
It might seem confusing to those who are grieving to see the title of this article. Gratitude is usually not on the list of experiences or emotions associated with grief. Sadness, anger, isolation, guilt, forgetfulness, irritability, rumination – these and many other words describe common responses to the death of a loved one. But gratitude? How does one make that leap?
Some people tell me that they experience gratitude early on in grief – perhaps even in the midst of the shock. They are grateful for those who show up to make difficult phone calls with the sad news or to help with funeral arrangements, to those who bring food or who simply come to sit with the ones who are grieving. For others, the shock of death is too overwhelming to appreciate these acts of kindness, but after some time has passed they can look back on the early days with gratitude for those who were there to help.
As grief continues other insights may come. We can appreciate opportunities such as having been able to say goodbye, express mutual love for whatever needed forgiving. We may be grateful for people who remember we’ve experienced a loss after one, two three, six or eight, twelve months have passed. Thank goodness for those who ask how you’re doing and really want to know the truth, for those who say your loved one’s name and tell you a story about them you never knew.
But perhaps the deepest gratitude of all is to the one who has died. Gratitude for examples set, for life lessons taught, for sweet memories, for accepting our love and for loving us as well. Many find this kind of gratitude deepens with the passage of time.
For some mourners it’s hard to find gratitude in the experience. A sudden death robs us of the opportunity of saying what we would have said if given the chance, and perhaps the best we can do is say these things in writing or “talk” to our loved one. If tragedy or trauma are present in the circumstances of the death it can take a very long time before the ones left behind feel thankful for much of anything. A difficult relationship or unfinished business with the deceased is a challenge to grieving and leaves us with a one-sided vision of shifting our perspectives and connecting with happy memories in order to find gratitude. And for some who grieve there are few if any people who show up to help or to listen. Sometimes we have to create our own support circle by proactively finding a community where we can.
Please understand – It is not to be suggested that gratitude is an essential part of grieving and that if you don’t feel it you’re not grieving correctly. Nothing could be further from the truth! However, connecting with gratitude – in whatever form you can find it – can help with managing or balancing the more difficult experiences around the death of a loved one.
Excerpted from the Brattleboro, VT Area Hospice Bereavement Newsletter, March/April 2019
Seeds of Change
“Grief is in two parts. The first is loss. The second is the remaking of life” – Anne Roiphe
As the seasons change with time so does our grief. We are entering a time of great change, going from dark snow-filled days to lighter more colorful days – grief can change in the same way. At the onset of the death of a loved one we are in the dark cold days of grief, longing for relief from the pain and sadness and longing for just one more day with them. As time goes by and we walk the journey of grief, it will change. Some days the grief comes in waves, at times calmly sitting with us and then suddenly crashing in on our hearts as they silently long for our loved ones.
The change from dark to light is never easy, just as the change of seasons can be difficult. March and April are prone to the changing of seasons as we experience more snow, ice, mud and eventually budding flowers and greener landscapes. The journey with grief is similar, experiencing deep sadness, loss, anger and remembrance, to eventually find our way in the new world to a new, lighter, more colorful way.
The seed of change is already planted in each of us to tap into, as are the seeds of spring flowers buried deep under the snow, waiting to rise and bloom into new life. It takes patience and time for the snow to melt and the flowers to find their way up through the earth. It also takes time for deep seeded grief to find its way through the pain to grow into a new way of being in the world. We are asked to be patient with our grief as it finds its way through our bodies, minds and souls. It may feel like better days will never come, but just as winter will change into spring, so our grief will change from debilitating pain to finding new life in the world without our loved one present.
Many of us want to make changes this time of year. We may want to get outside more, take walks, plant a garden, go kayaking or simply open a window for some fresh air. Some days the weather will cooperate and others it won’t, just as our grief comes and goes we work toward a day of clearer skies and warmer air.
We never forget our family and friends who have died just as we never forget that we live in a cold climate that will bring snow and all its sweetness back to us again. Death is a part of living and each moment of grief a part of who we become in the future. Embrace your grief, embrace your life, enjoy the new life springing around and in us this time of year
Excerpted from the Brattleboro, VT Area Hospice Bereavement Newsletter, March/April 2019
Most of us have regrets after a loved one dies. This is especially true if the death was unexpected. Regrets can be able the things we didn’t say or do, or about the things we said and did that felt awkward or that we worry might have been misunderstood. No matter how much we did to care for the loved one, we often regret we didn’t do more. We may regret we weren’t able to fulfill the person’s dying wishes because of circumstances that were beyond our control. Regrets are among the many complicated emotional/mental experiences we have to sort through in our grieving process. There can be a fine line between regret and guilt, another common and complex emotion after a death. For clarification on the distinction between regret and guilt, turned to a favorite website called “What’s Your Grief?” (whatsyourgrief.com.) In a blog posting on that website entitled “Guilt vs. Regret in Grief,” it suggested that “Guilt occurs when we do something that we know is wrong while we are doing it… Regret on the other hand, is the emotion we experience when we look back on an action and feel we should or could have done something differently. It differs from guilt in that we didn’t know or feel at the time that we were doing something wrong, or we didn’t actually have control over the situation.
In coming to terms with our regrets it’s necessary to first sort out actions that belong to regret vs. actions that belong to guilt. Then, it helps to name our regrets — to ourselves, to another person, or in writing. Only after naming them can we work on self-forgiveness, if the regrets are from actions where we could have chosen to act differently. Or, if regrets come from things we didn’t have control over, then acceptance is the work we have to do.
The next step is to see what we can learn from our regrets. It might be helpful to write down on one side of a paper the regrets you have about actions toward the person who died, then next to that list write down the things you feel good about that you did for the person. In most cases, I would guess, the list of things you did to help the individual is longer than the list of regrets. A list like this can be a useful tool to work on self-forgiveness, as well as a way to develop resolve to act differently in future instances when a loved one is dying. In his book The Four Things That Matter Most, Ira Nyock, M.D. writes that the most important words we can say to one another, especially when faced with a terminal illness are: “Please forgive me,” “I forgive you,” “Thank you,” and “I love you.” These words are excellent guides for our relationships every day, not just when we know someone is facing death, and saying them might reduce or even eliminate regrets.
Excerpted from the Brattleboro, VT Area Hospice Bereavement Newsletter, July/August 2017
“I was never sick while I was a caregiver for my spouse, but within a month of their death I got very sick with a long lasting cold, and it happened again at around six months.”
“Relieved because my spouse is no longer suffering from the horrible symptoms of PSP and relief from the stress of caregiving. However, these feelings caused me feelings of guilt. I also wondered if I was in denial, and what right did I have to now enjoy life. A grief counselor helped me through this by suggesting I had been unknowingly grieving for the last few years, referring to it as ‘anticipatory grief.” She also asked me “What would your spouse want you to do now? Stay at home crying all the time, or get on with it and enjoy life as best you can?” The answer was obviously the latter.”
“I can’t sleep at night.”
“For the first six months I could only recall my spouse and her suffering with PSP, but then I began to recall the wonderful person she was and what a great life we had together; that is when it ‘hit me’ that my grieving really began.”
“I was surprised at which friends supported me and which did not. I never would have guessed who would have been there for me and vice versa.”
“When grieving you have a lot of ‘toxicity’ in your life, so surround yourself with positive people and avoid negative persons. Also consider no longer watching the news, as both the local and national news focus and report on unpleasant things.”
“Remember that your children are grieving too, so be sure to reach out to them and ask how they are doing.”
“Look for positive signs, such as uplifting coincidences, birds (especially cardinals) showing up when you are down, sensing your loved one’s presence when you are alone, and so forth.”
“Physical activity helps. Take a walk, bicycle ride, and/or swim. Join a health club. Yoga is good too.”
What happens in the brain when someone you love dies — and how to overcome it with time.
It was a crisp night in June, the sky bright from the light of the full moon. I stopped at a gas station to fuel up before heading to the hospital to see my father. Three months after heart surgery, his newly replaced valve had begun driving bacteria into his brain, causing multiple strokes. He was dying.
Standing at the pump, I thought about how he would never visit our new home. How we would never dance together again. I paid for my gas, got back in the car and drove out of the gas station — with the nozzle still lodged in my tank.
When I stopped the car, an onlooker who had watched the nozzle fly out of my car’s gas tank said smugly, “You’re lucky it snapped off.”
I was embarrassed, ashamed and, most of all, in despair — not just because my dad was dying, but also because I was losing my mind. But I know now I was not alone: Frequently, humans who have experienced grief can recall incidents in which their brains seemed to stop functioning.
“The problem isn’t sorrow; it’s a fog of confusion, disorientation and delusions of magical thinking,” writes Lisa Shulman, a neurologist at the University of Maryland School of Medicine, in a blog post for Johns Hopkins University Press about her book Before and After Loss: A Neurologist’s Perspective on Loss, Grief and Our Brain. “The emotional trauma of loss results in serious changes in brain function that endure.”
Scientists are increasingly viewing the experience of traumatic loss as a type of brain injury. The brain rewires itself — a process called neuroplasticity — in response to emotional trauma, which has profound effects on the brain, mind and body. In her book, Shulman, whose husband died of an aggressive cancer, describes feeling like she was waking up in an unfamiliar world where all the rules were scrambled. On several occasions in the months after her husband’s death, she lost track of time. Once, after running an errand, she drove to an unfamiliar place and ended up unsure of where she was or how she got there. She pulled off the highway and had to use her GPS to navigate back home.
If these things can happen to a neurologist who understands brain biochemistry, what hope was there for me?
The Grieving Brain
After a loss, the body releases hormones and chemicals reminiscent of a “fight, flight or freeze” response. Each day, reminders of the loss trigger this stress response and ultimately remodel the brain’s circuitry. The pathways you relied on for most of your life take some massive, but mostly temporary, detours and the brain shifts upside down, prioritizing the most primitive functions. The prefrontal cortex, the locus of decision-making and control, takes a backseat, and the limbic system, where our survival instincts operate, drives the car.
In an attempt to manage overwhelming thoughts and emotions while maintaining function, the brain acts as a super-filter to keep memories and emotions in a tolerable zone or obliterate them altogether. According to a 2019 study published in Social Cognitive and Affective Neuroscience, grievers minimize awareness of thoughts related to their loss. The result: heightened anxiety and an inability to think straight.
As I watched my dad transform from a brilliant mathematician who could calculate complex algorithms in his head into a childlike dependent searching for words he couldn’t find, I began to feel like I was the one recovering from a stroke. I fumbled to find words for common objects like lemon or cantaloupe. There were times when I blanked on my husband’s phone number and even my own.
According to Helen Marlo, professor of clinical psychology at Notre Dame de Namur University in California, that’s not unusual. People who are grieving may lose their keys several times a day, forget who they’re calling mid-dial and struggle to remember good friends’ names.
Research shows these cognitive effects are more pronounced among people who have complicated grief, a condition that strikes about 10 percent of bereaved people and is marked by an intense yearning for the deceased. People with complicated grief experienced greater cognitive decline over a seven-year study period compared with those with a less complicated grief response, according to a 2018 study published in The American Journal of Geriatric Psychiatry.
As Marlo explains it, our brains have trouble processing the reasons for the death of a loved one, even making up explanations for it. This can lead us down a rabbit hole of “what ifs” and “if onlys,” particularly if we’re stuck in our grief. Only over time, and with intention, can grief provide fertile soil for growth and transformation.
The Grieving Mind
My dad always seemed to me almost superhuman — all go, no quit — and was at his best when he was making people laugh. He loved pulling a good prank, even dressing up as a waiter at my wedding rehearsal dinner. Nearly 20 minutes passed before it dawned on me that the odd server delivering wine and appetizers was actually my father. He lavished his grandchildren with tickles, belly kisses and really bad renditions of Marvin Gaye’s “I Heard It Through the Grapevine.”
Research suggests our experience of loss — whether muted or traumatic — is mediated by relationships, and the life of those relationships resides in the mind. “Each of us responds to grief differently, and that response is driven by the relational patterns that we lay down early in life, as well as the intensity of the grief,” says Marlo. “So even though regions of the brain might be firing and wiring the same way after loss, the way the mind reacts — the ‘feeling’ experience of grief — is unique to the individual.”
What I hadn’t fully grasped in the early days of my grieving is that the brain and the mind, while inextricably linked, are completely separate entities. Like the parts of a car engine, the two feed off of each other. That’s why my amygdala (part of the primitive limbic system) sounds an alarm when I see a grandfather playing with his grandchildren at the park. It’s because the brain triggers a stress response attached to my feelings of loss.
“Grieving is a protective process. It’s an evolutionary adaptation to help us survive in the face of emotional trauma,” Shulman writes in her book. The way grief manifests — from depression to hopelessness, from dissociative symptoms to emotional pain — is just evidence of altered brain function. So how do you heal an emotionally traumatized brain? “You have to embrace the changes that are happening in the brain instead of thinking you’re losing your mind,” says Marlo.
Finding a Way Forward
As with any injury, an emotionally traumatized mind requires a period of recovery and rehabilitation. We don’t return to our usual activities immediately after heart surgery, yet somehow we expect to bounce back after the mind scramble of losing a loved one. “With grief, the mediator between the right and left hemispheres of the brain — the thinking and feeling parts — is impaired,” explains Marlo. “The task is to integrate both, so you’re not drowning in the feelings without thought as a mediator or silencing feelings in favor of rational thinking.”
Research suggests that you can encourage the integration of the right and left hemispheres with activities from medication to psychotherapy to massage. A 2019 study of 23 bereaved people published in Frontiers in Human Neuroscience found that participating in an eight-week mindfulness-based cognitive therapy improved the ability to execute complex mental processes, such as working memory and the ability to curb impulses. Other studies suggest that traditional cognitive behavioral therapy — which trains the brain to change thought patterns — helps foster personal growth among people who are grieving.
“Neuroplasticity moves in both directions, changing in response to traumatic loss, and then changing again in response to restorative experience,” Shulman writes in her book. One way to heal is to reflect on the relationship with the deceased and work to hold both the love and the pain.
For some, that means wrapping themselves in a beloved T-shirt or quilt, visiting the cemetery, journaling about positive memories or creating a photo book or video of life with their loved one. For me, it meant stalking hummingbirds in my backyard; my dad loved to watch their tireless pursuit of happiness. In that respect, the birds were just like my dad. When they flutter around me, I can almost sense his presence.
“Connecting the loss with behaviors and activities helps the grieving brain integrate thoughts and feelings,” says Marlo. “So if your hummingbird-seeking behaviors elicit feel-good emotions, that can put your grieving mind on a path toward healing.”
Written by Amy Paturnel
Excerpted from Discover Magazine August 2020
Suggestions and Information for Volunteers and Supporters of those Who are Grieving
- Send an email
- Call them – stay in touch
- Send a sympathy card
- Send them CurePSP’s brochure “Facing loss and the end of your caregiver role”
- Attend the funeral service
- Make a donation in honor of their loved one
- Meet with them for coffee, lunch, etc.
- Help them find support, i.e. grief therapist, grief support group
- Encourage participation in CurePSP online bereavement support group
- When a member of your support group loses a loved one, reassure and encourage them to continue participation in your group.
- Encourage participation on Smart Patients forum conversations (Loss of a Loved One)
- Send them a bereavement article (or several) from the CurePSP resource or book list
- When they are ready, assist them with donating their no-longer-needed equipment and supplies
- Be available to listen and help when needed
- Encourage them to fill out the CurePSP “Grab & Go for Survivors” document with your medical information for use in an emergency. This should be placed in an envelope and affixed to the refrigerator if they are living alone, so it can be easily found by first responders.
- Notify CurePSP with contact information containing the name of the deceased, and name/mailing address of the survivor
- Do let your genuine concern and caring show.
- Do be available: to listen, to run errands, to help with the children or whatever is needed at the time.
- Do say you are sorry about what happened to their loved one and about their pain.
- Do allow them to express as much grief as they are feeling at the moment and are willing to share.
- Do encourage them to be patient with themselves, not to expect too much of themselves and not to impose any “should” on themselves.
- Do talk about the special endearing qualities of the person they’ve lost.
- Do give special attention to all members of the family at the funeral and in the months to come. They too are hurt and confused and in need of attention that the primary caregiver may not be able to give at this time.
- Do reassure them that they did everything that they could, that the medical care their loved one received was the best or whatever else you know to be TRUE and POSITIVE about the care given to their loved one.
- Don’t let your own sense of helplessness keep you from reaching out to a bereaved person.
- Don’t avoid them because you are uncomfortable. Being avoided by friends adds pain to an already intolerably painful experience.
- Don’t say, “You ought to be feeling better by now,” or anything that implies a judgment about their feelings.
- Don’t tell them what they SHOULD feel or do.
- Don’t change the subject when they mention their dead loved one.
- Don’t avoid mentioning the loved one’s name out of fear of reminding the bereaved of their pain. They haven’t forgotten it!
- Don’t try to find something positive (e.g. a moral lesson, closer family ties, etc.) about their loved one’s death.
- Don’t point out that at least they have others. People are not interchangeable; they cannot replace each other.
- Don’t say that they can always get married again, have another child, etc. Even if they do or want to, another would not replace the person they have lost.
- Don’t suggest that they should be grateful for their remaining loved ones. Grief over the loss of one person does not discount a person’s love and appreciation of their living relatives.
- Don’t make any comments that suggest that the care that their loved one was given at home, in the hospital, etc., was inadequate. The survivors are plagued by feelings of doubt and guilt without any help from their family and friends.
There are no magic words that will take the pain away.
It’s Helpful to Say:
“I’m sorry. It must be very painful for you.”
“Do you feel like talking about it?”
“What hurts most?”
“What are you feeling now?”
“It’s okay to cry.”
“What can I get for you (or do for you?)”
It’s NOT Helpful to Say:
“At least he/she didn’t suffer.”
“It’s part of God’s plan”
“You’ll get over it (or you should be over it.)”
“I know just how you feel.”
“Why don’t you go out and have some fun?”
Excerpted from Bereavement Magazine – June 1992
Many people talk about the stages of grief, what it should look like, how it can be timed. The truth for those of us out there who have experienced a journey fraught with loss is that there are no stages, no set time lines. Grief can swing around, come full circle, dragging you forwards and backwards on its own whim.
While everyone around you might be thinking it is time to move on or that you have finally begun to cope or “normalize”, you may be churning with turmoil and only beginning to understand the magnitude of what you’ve really lost.
While you outwardly carry on, getting dressed with socks that match and opening your home with a house key instead of trying to cram a car key into the lock, you may be inwardly struggling to survive. This can stretch into a long period of solitude full of self-reflection. The well-meaning friends and family in your life might inadvertently discourage any open grieving, encouraging you to “be happy”, “think positive”, or “move on with your life”.
This form of rejection can cause you to retreat into yourself as you pull away from those around you, isolating yourself on purpose. Often times it easier to be alone· so you can express your pain rather than constantly trying to cover it up or be told to put it away by those around you.
I want to outline this today as a gentle reminder to others that when a griever seems to want to be alone, that it is perfectly normal and acceptable. It often is nothing to do with you or what they think of you as a person. They are not trying to subtly tell you they dislike you or prefer the company of someone else. They are not being selfish or refusing to cope, nor are they in denial. They are simply grieving and behaving normally for someone in that much pain. Sometimes being alone can be the most helpful thing for them.
When the magnitude of the loss becomes too great, it can bring us to our knees. We need time to think, to ponder,· to go over the details of our loved one’s life and death over and over again in our minds until we can find some measure of resolution on some aspect of it.
Please understand that asking the griever to do the work – to call you or to stop by your place or to make all the effort to connect – is asking too much. They are the ones hurting and will need you to make the effort. After all, if you saw someone injured on the side of the road, wouldn’t you stop and help right away rather than ask them to call you later when they are ok to let you know if there ls anything you can do?
Even in times of isolation and sadness it is important to let the griever know you care. While they may not want to see anyone, a simple email, note, text, or phone call saying you are thinking about them and still care can make a huge difference. I personally kept every phone message and email I received from people, including the ones I never had the chance to reply to. Sadly, for months, this was most of them. I still read and listen to these from time to time when I am feeling low. They are a beautiful reminder that I am loved, thought of, cared for.
In particular, a friend I had lost touch with over the years sent me a song that she said reminded her of me and what I was going through. The song ended up being one I played over and over, listening to the lyrics, touched by not only the thought that went into it, but how much I connected the music with my own struggles. A
coworker sent me a poem that had helped him through the loss of his own wife. I carried it around with me in my wallet for months, not because it was necessarily a poem I would have chosen, but because I was so touched by the wonderful sentiment behind it. They didn’t have to find the perfect words in their own hearts, they just shared something they had found that they thought might touch mine.
Simple gifts can also go a long way. Giving to a charity in honor of the person they lost can mean a lot. The gift of housekeeping services or a certificate to a spa or massage can make a big difference. Perhaps stepping up to mow their lawn or drop off some groceries are viable options. Even if the griever prefers to be alone, do not be discouraged. There are still many, many ways you can let them know you care and are thinking about them.
Often we on the outside can inadvertently assess the griever’s actions, trying to decide for ourselves where they are at and how that stacks up to where they should be. I know this because I have been both a widow and someone on the outside, watching someone I know become widowed. We have the best of intentions, but we can’t help seeing them through our own assumptions, ideas, and beliefs about grief.
Rather than looking at the griever’s behavior and trying to decide if it is normal or not compared to your own feelings, understand that they are in a position you cannot even imagine. As tough as it sounds, your ideas about what is ‘normal’ behavior for them are misguided, at best. You may think you can imagine what you would do in their position, but that is actually impossible. Instead try to accept them for where they are, and know that their pain is too deep and overwhelming for you to understand without having walked in their shoes. Be the listener they need rather than the giver of advice. Remember, no matter how many losses you have faced, they know far more about grieving than you do right now.
And above all, do not hold their behavior against them later on down the road. While you may never understand why they chose to be alone at certain times or why they seemed so sad for so long, or why they never returned your phone calls, their behavior was still completely normal and a part of their own personal journey.
As difficult as it may be, you must remind yourself that it is not about you. It is about their loss. This is their experience and it will be unique to them. Simply offering your own time and support can be the most amazing gift, and can help them on their road towards healing. Just remember to honor and respect the unique path that they chose.
By Emily Clark
On grief, condolences, and what to say to someone who has lost a loved one.
Those words are well-intentioned, of course, but they make me feel even more alone. It’s that “your loss” piece: This condolence message suggests I’m alone on an island.
About nine years ago, I lost my mom suddenly and tragically. Three years after that, I lost my partner to an undetected medical condition. For a while, “I’m sorry for your loss” was the mainstay of most of my social interactions. The grief I felt was impossible – and· made even more difficult by the fact that the world didn’t seem to know how to interact with me. That’s because we’re rarely taught to speak about loss with those who are grieving, let alone do it well. Either we don’t know what to say, unintentionally say the wrong thing, ask too many questions … or don’t say anything at all.
Many people’s instinct, after offering words of condolence and sympathy, is to begin conducting a small investigation. They’ll ask questions: “What happened?” “Was she sick?” “How’s your dad doing?” Those innocent queries can be hard for the grieving person to answer, especially when the answer isn’t simple. Plus, many people who’ve recently experienced loss may still be processing it for themselves, or barely able to string a sentence together. (Which was certainly the case for me.) While I don’t think we’re intentionally interrogating those who are grieving, I’m not sure many of us know how to do better.
As we begin to interact with the world again, many people we encounter will be grieving the loss of someone the pandemic stole from them. I want us to get it right this time: for them not to feel abandoned or interrogated. The best way to lift up those who’ve experienced loss is to learn how to acknowledge it. So here are some ways to support those who need it so badly:
The other day, I ran into a childhood friend I hadn’t seen in years. He could have easily ignored my mom’s passing, since so much time had gone by. Instead, he said, “I thought of you so much during that time, and I carried you with me.” Immediately, my eyes welled up with tears. By saying I carried you with me, he made me feel as if I wasn’t bearing the burden of grief alone. I didn’t feel “othered” – I felt cared for. Sometimes, all we need to hear when we’re mourning is that through the chaos of grief, someone is walking beside us through the storm. His words broke through my overwhelming feeling of isolation.
Show Up With Something
I’ll never forget the dear friend who brought soup after the passing of my partner. She left it on my doorstep, and I caught her as she was about to leave. She didn’t want to burden me with words – she just wanted to nourish me. That action was so powerful, I almost collapsed with gratitude. There’s a reason so many people send casseroles and baked goods to families in mourning: A meal can so often feel like a hug.
Don’t Be Afraid to Acknowledge the Deceased
My aunt called me recently, and after I picked up the phone and launched into a story, she told me that in that moment, I’d sounded just like my mother. Those words stayed with me all day and warmed my soul. Some people fear that sharing a memory of the deceased with someone who’s grieving could bring on more pain. But so often, reminding someone of how special their loved one was can be a great antidote to the emptiness of loss. The opportunity to hear a treasured memory – to see my loved one through someone else’s eyes – is illuminating.
If you’re thinking of someone while they’re grieving, or even years after their loved one has passed, let them know. Take real action that shows love and support -share a memory, bring a meal . Whatever you choose to do, remember that the best way to lift up those who’ve experienced loss is to bring it into the light.
By Nicole Garelick
Excerpted from Katie Couric Media
Resources and Support for the Person Experiencing Loss
If after losing your loved one you are now living alone and experience a medical emergency, first responders and emergency departments must know your health conditions and have access to your medical information if you are to obtain proper treatment. CurePSP has developed a “Grab & Go” document that serves to provide most of this necessary information in an emergency situation.
It is suggested that you put together the following documents:
- Your information recorded on the “Grab & Go for the Person Experiencing Loss.” (Click here to download)
- A copy of your Medical Directive. This can also be in the form of a POLST (Physician Orders for Life Sustaining Treatment,) a MOLST (Medical Orders for Life Sustaining Treatment,) or a DNR (Do Not Resuscitate)
- A copy of your Medical Power of Attorney, so the persons you have designated can make medical decisions for you if you are unable to do so for yourself
- Copies of additional critical medical information if you have them, such as an EKG
- A copy of your Medicare and Medical Insurance Cards
Because you never know when your medical information may be required, it is suggested you make several copies and put them in envelopes labeled ‘Medical Information.’ Then place them in locations such as these:
- Affix one to your refrigerator so it can be easily found by first responders
- In the glove compartment of your automobile
- In your carry-on luggage when traveling
- In your purse
- A conspicuous place where you work
Recommended Online Resources
The following are some available and recommended resources for the benefit of persons grieving:
- CurePSP Bereavement Support Group – once monthly Zoom meeting
- Smart Patients Communities – “Loss of a Partner” and “Loss of a Parent”
- www.griefnet.org – online grief support
- www.griefshare.org – find local grief support groups by ZIP code
- www.virtualhospice.ca – grief support and information
- www.grief.com – grief support and information
- www.psychologytoday.com/us/therapists/grief – grief therapist locator
Recommended Books on Bereavement and Grief
The following are suggested books for the benefit of persons grieving:
- Coping with Grief: A Guide for the Bereaved Survivor – Bob Baugher, PhD
- Ambiguous Loss: Learning to Live with Unresolved Grief – Pauline Boss
- It’s OK That You’re Not OK – Megan Devine
- Finding Meaning with Charles – Janet Edmundson
- Living when a Loved One Has Died – Earl A. Grollman
- Healing After Loss: Daily Meditations for Working Through Grief – Martha W. Hickman
- On Grief and Grieving, Finding the Meaning of Grief Through the Five Stages of Loss – Elisabeth Kubler-Ross M.D. and David Kessler
- Finding Meaning: the Sixth Stage of Grief – David Kessler
- Unattended Sorrow: Recovering from Loss and Reviving the Heart – Steven Levine
- Living Beyond Loss: Death in the Family – Froma Walsh and Monica McGoldrick
- Last Dance at the Savoy – Kathryn Leigh Scott
- Understanding your Grief: Ten Essential Touchstones for Finding Hope and Healing Your Heart – Alan D. Wolfelt
- ABC’s of Healthy Grieving: A Companion for Everyday Coping – Harold Ivan Smith
- Grief and Loss – A Harvard Medical School Special Report
- Still Here: Embracing Aging, Changing and Dying — Ram Dass