Bereavement Support Resources

Increasing awareness and providing support and education to those affected by prime of life brain disease are at the core of CurePSP’s mission. We are continually working to address the needs of our courageous caregivers, patients, and family members who walk this difficult road.

Click Here to View This Brochure

Grief is a very personal journey, often impacted and shaped by different cultural and religious practices and always woven with complex thoughts, feelings, and emotions. We want to provide you with our support and perhaps offer some guidance to help you on this journey and transition in your life

We have collaborated with members of the CurePSP Patient & Carepartner Advocacy Committee to create a list of bereavement resources, articles, books, and online links. We are also offering a once-monthly online Zoom support group for recently bereavement family members. 

After The Loss: A Bereavement Support Group for Carepartners

Meeting Times: 3rd Tuesday of each month at 2:00pm Eastern
Registration Link:  https://us02web.zoom.us/meeting/register
Meeting Tel: +1 646 558 8656         Meeting ID: 880 1661 4170    

This monthly group is facilitated by CurePSP’s Director of Patient and Carepartner Advocacy, Gregg Felice, LCSW felice@curepsp.org and Meghan Sweeney, LCSW meghansweeney1@gmail.com

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.

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.

But rather,

There is absorption.

Adjustment.

Acceptance.

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.


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.

  1. 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.
  2. 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.
  3. 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 “
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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.”
  9. 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.
  10. 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

Help Through Grief

  1. Be patient with yourself. Do not compare yourself to others. Go through the mourning process at your own pace.
  2. Admit you are hurting and go with the pain.
  3. Apply cold or heat to your body, whichever feels best.
  4. Ask for and accept help.
  5. Talk to others.
  6. Face the loss.
  7. Stop asking “Why?” and ask “What will I do now?”
  8. Recognize that a bad day does not mean that all is lost.
  9. Rest
  10. Excercise 
  11. Keep to a routine.
  12. Introduce pleasant changes in your life.
  13. Know that you will survive.
  14. Take care of something alive, such as a pet or a plant.
  15. Schedule activities to help yourself get through weekends and holidays.
  16. Find someone who needs your help.
  17. Accept your feelings as part of the normal grief reaction.
  18. Postpone major decisions whenever possible.
  19. Do something you enjoy doing.
  20. Write in a journal.
  21. Be around people.
  22. Schedule time alone.
  23. Do not overdo.
  24. 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

Collective Grief

Experienced by communities or societies

Anticipatory Grief

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?)

Cumulative Grief

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

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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

Gratitude

“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


Regrets

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

“Grief is like the ocean; it comes on waves ebbing and flowing. Sometimes the water is calm, and sometimes it is overwhelming. All we can do is learn to swim.” -Vicki Harrison


“Everyone can master grief but he who has it.” – William Shakespeare


“Life must go on; I forget just why.” – Edna St. Vincent Millay


“And can it be that in a world so full and busy, the loss of one weak creature make a void in any heart, so wide and deep that nothing but the width of eternity can fill it up.” – Charles Dickens


“Grief is an emotional, physical and spiritual necessity, the price you pay for love. The only cure for grief is to grieve.” – Earl Grollman


“He that conceals his grief finds no remedy for it.” – Turkish Proverb


“It’s so curious: one can resist tears and ‘behave’ very well in the hardest hours of grief. But then someone makes you a friendly sign behind a window, or one notices that a flower that was in a bud yesterday has suddenly bloomed, or a letter slips from a drawer… and everything collapses” – Colette


“I thought I could describe a state; make a map of sorrow. Sorrow, however, turns out to be not a state but a process.” – C.S. Lewis


“For in grief, nothing ‘stays put.’ One keeps emerging from a phase, but it always recurs. Round and round. Everything repeats. I am going in circles, or dare I hope I am on a spiral? But if a spiral, am I going up or down it? How often will it be — for always? How often will the vast emptiness astonish me like a complete novelty and make me say, ‘I never realized my loss til this moment?’ The same leg is cut off time after time.” – C.S. Lewis


“All I know from my own experience is that the more loss we feel the more grateful we should be for whatever we had to lose. It means we had something worth grieving for. The ones I’m sorry for are the ones that go through life not knowing what grief is.” – Frank O’Connor

“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

  • 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
  • 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 create a mini-binder containing their medical information for use in an emergency
  • Notify CurePSP with contact information containing the name of the deceased, and name/mailing address of the survivor

Do:

  • 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’ts:

  • 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

Recommended Online Resources

The following are some available and recommended resources for the benefit of persons grieving:

Recommended Books on Bereavement and Grief

The following are suggested books for the benefit of persons grieving: