Anticipatory and Ambiguous Grief” (in caregiving) – Webinar Notes

Brain Support Network volunteer Denise Dagan attended a talk in mid-April 2022 that she describes as “the best talk I have heard on anticipatory and ambiguous grief.”  The guest speaker was dementia care specialist and certified grief counseling specialist Hollie Glover. The webinar was hosted by WellMed Caregiver Teleconnection (wellmedcharitablefoundation.org).  The talk, focused on caregivers, is not specific to any neurological disorder.

Denise attended the talk as a staff member at Stanford Parkinson’s Community Outreach.  Here are Denise’s remarks about the talk and detailed notes:

Hollie explained that the concept of “ambiguous grief” came out of the Vietnam war.  Families who were told their loved one was missing in action (MIA) or a prisoner of war (POW) did not experience grief the same as for someone who had died.  Rather, they experienced a loss without finality leaving them disoriented, not understanding the loss or how to move forward.

When a death is announced, the family experiences conventional grief.  There are societal norms around how to respond and support the family.  We bring food, send cards or flowers, attend services, etc.

But situations that cause anticipatory and ambiguous grief — like the diagnosis of a neurodegenerative illness, divorce, addiction, mental illness, even infertility — are often accompanied by feelings of embarrassment or shame.  Our support systems tend to fall away because people are unsure what to say or how to help.

Hollie went into detail about how to recognize whether you are suffering from anticipatory or ambiguous grief and even more detail about how to cope.  Acknowledging that it is it normal to have opposing feelings in equal measure can be helpful:

  • She/he is both gone and still here (when caring for someone with cognitive impairment)
  • I take care of both him/her and myself
  • I am both a caregiver and a person with my own needs
  • I both wish my loved one’s journey was over and wish that my loved one keeps on living
  • I am both sad about my lost hopes and dreams and happy about some new hopes and dreams

Coping well with anticipatory or ambiguous grief does not spare us from grief at the end of life, but it does give us time to understand and reframe our feelings so we can have important conversations, find closure, let go of guilt, spend quality time together, and help our loved one leave a legacy.

Coping with anticipatory or ambiguous grief may even allow us the bandwidth to understand that our loved one (e.g., person with Parkinson’s or other affliction) is also experiencing anticipatory or ambiguous grief, so we can help them cope with their feelings too.

A recording of the teleconference can be listened to on the WellMed Teleconnection Website.

And now, on with my notes…


 

“Anticipatory and Ambiguous Grief” – Webinar Notes

Speaker: Hollie Glover, MA, LPC, NCC

Host: WellMed Caregiver Teleconnection

Webinar Date: April 11, 2022

Summary by: Denise Dagan, Stanford Parkinson’s Community Outreach Program

 

Course Objectives:

  1. Discuss Ambiguous and Anticipatory Grief and the impact it has on individuals.
  2. Define Ambiguous and Anticipatory Grief, specifically how it relates to families with a degenerative diagnosis.
  3. Review grief, loss, and bereavement
  4. Discuss ways to overcome Ambiguous and Anticipatory Grief
  5. Examine the emotional impact of Ambiguous and Anticipatory Grief.

Grief

  • Grief is the loss of something or someone. It is a normal, natural emotion.
    • Our society tends to not like feeling emotions we think of as other than positive.
    • Research shows there are no good and bad emotions. All emotions are normal.
  • We generally associate grief with death.
  • We grieve many things such as job loss, divorce, relationships, dreams, etc.
    • Caregivers generally don’t realize they are going through grief as they are caregiving. It can help to name what you are feeling so you can understand what you are feeling and learn to cope.
  • Grief is different from sadness. Sadness is feeling sorry or being unhappy.
    • Grief is a dull ache that shows up when we least expect it and takes over our emotional well-being.
    • Grief can be like waves on the ocean. One minute the ocean can be calm, the next a wave can bowl us over and knock the wind out of us. We can stand in waves when we have firm footing.
  • Tears often take the place of words with grief. They are an act of love.
    • We should not hold back our tears or keep others from seeing our tears.

Ways to Think About Loss

  • Physical, emotional, or economic harm or damage
  • Losing possession of a thing or a relationship
    • divorce
    • business failure
    • death of or a missing pet
    • bankruptcy or repossession
    • loss of ‘normal’ (Covid falls here
  • Deprivation or separation

In the past couple years with Covid we have all felt losses, loneliness, and deprivation. Adding the burden of caregiving and losses associated with caregiving has been overwhelming for some, especially for those whose loved one was in a care facility during lock down and they didn’t know when or if they would ever see them again.

Bereavement

  • The action or condition of loss
  • A period of mourning with no timeline or time limit **
    • Hospice offers bereavement support for a minimum of 13 months following death of a loved one. This is to help the bereaved get through all the holidays, milestones, and anniversaries for an entire year plus one month.
  • A time of intense grief
  • A process where one is deprived of someone or something
  • Normal process after a loss

** This is not true for complicated grief, in which grief interferes with one’s ability to function day-to-day, for longer than six months. More on this later in this talk.

“There is nothing more difficult than grieving the loss of a loved one who is still alive.” People who haven’t experienced this, don’t get it. They can’t understand what you’re going through.

 

What is Ambiguous Grief?

  • Definition of Ambiguity: the quality of being open to more than one interpretation/having a double meaning.
    • Hollie provided an image in her slides ahead of the teleconference that can be seen as a duck or a rabbi
  • Definition of Ambiguous Grief: a loss without finality which leaves us disoriented and not understanding the loss or how to move forward. We are left with many unanswered questions and a changed relationship.
    • Hollie explained the origin of the term Ambiguous Grief came out of the Viet Nam war when it was noticed that the grieving process was different between families whose loved one had died and families whose loved one was missing in action (MIA) or a prisoner of war (POW). The families of MIA or POW lived with uncertainty, not knowing where their loved one was, their health, living conditions, or future.

You Have Experienced a Significant Relationship Loss

  • The person you are losing is still alive
  • Divorce
  • Infertility
  • Mental Health Issues
  • Addiction
  • Desertion
  • Missing Person (MIA)
  • Dementia

Without a physical death, we can become consumed thinking that life might return to normal. We don’t have the closure we might have in other situations.

This is especially true early on in caring for someone with a degenerative disorder, when our loved one is having a good day and we hope that will continue. We may start to question whether the diagnosis is correct. This is but one of the stages of grief, denial.

You Have a Sense of Shame or Embarrassment Over Your Loss

  • Ambiguous grief is born from an event such as divorce or a diagnosis.
  • The loss can feel like a personal failure, or it might carry a perceived stigma. We may start to blame ourselves and wonder what we could have done to prevent it. Our brain searches for logical answers to the illogical. We can become frozen in place.
    • A caregiver’s brain can get stuck in a state of fight/flight/freeze, which increases levels of the stress hormone cortisol and can have a negative effect on our health.
  • This is a normal reaction to an abnormal situation.
  • This can prevent us from feeling comfortable sharing the news with others.
    • If you don’t tell others about a neurodegenerative diagnosis, you won’t receive the support you need and would receive after a conventional death.
  • Examples: a parent embarrassed that their child is an addict, a wife ashamed of her husband’s affair, a husband embarrassed over his wife’s Alzheimer’s (or Parkinson’s) Diagnosis and his inability to care for her.

You Haven’t Acknowledged the Pain Publicly

  • When a loved one is lost to death, there is social understanding. We know what to do. (bring food, send flowers, etc.)
  • After death we reorganize family roles, and somebody takes over what the deceased used to do. But we now must do that, and they are still alive.
    • If your husband mowed the grass, you must mow the grass, or find someone to do it.
    • If your wife paid the bills, you must now pay the bills.
  • During ambiguous grief we might not even know how to talk about what we are feeling, therefore, we receive no support.
    • Putting a name to it, gives us context and a way to think about it, which helps us talk about it.
  • Some families go so far as to say, “family matters are private” and won’t allow conversations about what they are experiencing.
  • By not talking about our situation, we are preventing others from helping, supporting, and encouraging us to help promote our healing.
    • There are people who want to help you, but they don’t know how.

List of Roles You Miss About Your Loved One While They Are Still Alive:

This list was created by caregiver support group members (wives, husbands, and adult children).

  • Friend
  • Gardener
  • Parent
  • Business partner
  • Provider
  • Listener
  • Mechanic
  • Companion
  • Playmate
  • Child
  • Spouse
  • Bill payer
  • Cook
  • Lover
  • Tax preparer
  • Driver
  • Handyman
  • Confidant
  • Stabilizer
  • __________ (What do you most miss about your loved one who is still alive, but so much of them is gone?)

Spousal caregiver support group members often say they feel like they are single. Their spouse is still alive, but they can no longer attend parties.

People who have never experienced ambiguous or anticipatory loss do not understand. If/when you complain about missing these things they may reply, “But he/she is still alive.” Of course, that is no comfort at all because you know all the aspects of your relationship that have disappeared with the progression of their disorder.

It’s Okay, to not be Okay

  • Give yourself permission to grieve the loss of the person and the relationship. It is all right to grieve someone who is still living.
  • Grieving is moving forward through feelings.

What You Can Do About It

  • Name it to tame it. Being able to identify and name this grief is the first step in healing.
    • Realize that your emotional relationship doesn’t end but it is changing. Replaying events and wishing things would go back to normal delays the healing process and prolongs grieving.
    • Work on saying the words: “Our relationship has changed. It is a real and permanent change. They are not going to snap out of it. We are not going back to the way we were.”
    • Explore Hollie’s favorite Feelings Wheel, especially when journaling.
    • When the only word that comes to you is ‘sad,’ the feelings wheel will help you see all the parts of sad, like depressed, lonely, bored, tired, ashamed, and guilty.
    • When you combine sad with those more specific feelings, you may find you really feel remorseful, stupid, inferior, isolated, apathetic, or just sleepy.
    • This is the first step in healing; acknowledging or identifying the problem, just like in a 12-step program. You’ve got to name it to tame it. Say it aloud or write it down.
  • Find support for yourself. Connect with others who can relate. A therapist, friends, clergy, support groups, etc. are great resources. There are many online forums dedicated to grieving caregivers as well. One of the worst things we can do is isolate ourselves. (Find a support group with this website www.grieving.com)
    • Those closest to us are not always the kind of support we need.
      • They don’t understand anticipatory or ambiguous grief.
      • They want to fix things, so they don’t hear how we are feeling.
      • Sometimes, we just need to be heard and understood.
  • Take care of yourself physically. It is common to develop depression, anxiety, phobias, negative expectations, and other health issues. See your doctor and explain what you are going through. Don’t be a statistic!
    • 68% of spouses caring for someone with dementia will die before the person with dementia
    • 64% of adult children caring for a parent will die before that parent
    • Has your health has changed since you started caregiving? The timing is not just because you are aging. Caregiving is a tremendous stress on the human body.
    • Initial symptoms of caregiver stress can be anxiety, depression, phobias, negative expectations
    • Caregiver stress is soon followed by high blood pressure, diabetes, heart problems, and more.
  • Tap into a positive emotion. Find a ritual that brings you pleasure and do it each day. It will give you something to look forward to. It can be a song, a smell, a feeling, something sensory that makes you feel good will help ground you.
    • Try music, especially that which you loved between the ages of 10-25.
    • Enjoy the sunshine, walk, garden, etc.
  • Connect with your Higher Power. Create a daily meditation or prayer time.
  • Write a letter of release. Say goodbye, to the relationship that was, through words and release it to God, the Universe, the Higher Power, etc.
    • Alternatively, do an ’empty chair’ exercise by imagining your loved one in the chair and telling them aloud how much you miss how you were together, but that you resolve to embrace how you are now and the changes to come.
  • Build your resilience. Begin a daily gratitude list. Think of 3 things that were good or that you did well during the day. This can take less than two minutes to do. Write down your gratitude list and reread them over time. It will help you measure your growth to see how far you’ve come in your grief.

Moving Forward

  • Ambiguous grief takes time to work through. There is NO timeline
  • You will emotionally distance yourself from the unanswered questions.
  • The only way to move forward is to feel the hard feelings and replace the need to understand with a commitment to move forward
  • Celebrate what remains. Be open to a new type of relationship. Learn to embrace happy/sad. There are silver linings. Look for what they can still do. They may even start doing something like art that you never knew they could do. The present doesn’t override the past.
    • They are not giving us a hard time they are having a hard time.
    • We must accommodate their disease, they can’t. They would if they could.
    • Your loved one may dance, sing, do art or exercise, etc. when they would not have before.
    • Cherish the memories. Find ways to preserve them. Be open to making new memories.
  • Understand the illness isn’t the person. Understand their illness can help you divert some of your angry feelings
  • Find meaning in what you are experiencing. You may meet new people, grow closer to friends and/or family, discover things about yourself. Develop a skill set you never knew you had. It allows us to make sense of and use our pain in a way that helps us and others cope.
    • Some of Hollie’s support group members continue to attend meetings for years after their loved one has died to pass on what they learned and support others early in the journey.

What is Anticipatory Grief?

  • Grieving that occurs prior to the actual loss. Can be anticipating:
    • death
    • challenging behaviors
    • unknown future
  • The total set of cognitive, cultural, and social reactions to expected death
  • The unconscious process of “letting go” and having closure before the loss occurs
  • Absorbing the loss gradually and beginning to prepare for the inevitable
  • Common in those facing the eventual death of a loved one OR their own death

Don’t forget that the person you care for is also experiencing anticipatory grief!

Why Don’t We Talk About It?

  • Most people are familiar with grief after a death (conventional grief).
  • Some people are hesitant to express the deep pain experienced before the death.
  • Therefore, they don’t receive the support they need.

How Does it Differ from Conventional Grief?

  • It involves more anger. It is the easiest emotion for most people to cope with
    • The louder, bigger, more intimidating we get, the more we feel in control.
    • Some people, unable or unwilling to face their feelings, will be angry all the time.
    • The root of anger is usually fear
      • Hollie told the story of a woman in her support group who was mad at everything and everybody. Even though she was being verbally ugly, Hollie let her run out of steam. When her anger finally turned to tears, she finally expressed her fear, saying “What if when can finally visit my Dad again (after Covid lockdown), he doesn’t know who I am or he’s at the end of his life?”
    • More loss of emotional control
      • Temper tantrums in the ‘terrible twos’ is because young children have no emotional control.
  • More atypical grief responses (intense sorrow, numbness, bitterness, lack of trust, etc.)
  • In-between balancing act of “holding on” and “letting go”
  • 40% of women in a study said that Anticipatory Grief was worse than the post-loss grief (www.verywellhealth.com)

What are the Symptoms of Anticipatory Grief?

  • Grief refers to the reactions that we experience when loss upsets the usual routine of our life.
  • They are physical, behavioral, psychological (cognitive and emotional), social, and spiritual.

Symptoms of Anticipatory Grief

  • Sadness/Tearfulness: can happen rapidly and often unexpectedly it is allowing grief to help prepare for the loss
    • One support group member found herself crying in the grocery store when she realized she didn’t need to buy oatmeal for her spouse anymore because he now lives in a facility.
  • Fear/Anger/Irritability: Educate yourself on what is happening
  • Loneliness/Depression: many people don’t talk about loneliness because they fear others won’t understand, since their loved one is still alive. If you don’t talk to someone and be proactive this can lead to social withdrawal and emotional numbness to protect your pain.
  • Resentment: which can lead to guilt. Enlist help BUT continue to live your life.

More Symptoms

  • Anxiety: When caring for someone who is dying you live in a heightened state of anxiety all the time. This can cause physical symptoms such as palpitations and shaking or tremors.
  • Depression
  • Guilt: You may be wishing they would pass so heir (and your) suffering/pain will be over.
    • Replace the word guilt with Remorse. Guilt implies you did something wrong. You did nothing wrong. You are doing the best you can.
    • Even if you placed your loved on in a facility. Neither of you knew what was going to happen in the future. Promising never to place a loved one in a facility is unrealistic.
    • Your job as a caregiver does not change when you place a loved one in a facility. It just changes to one of managing his/her care, rather than doing everything hands-on yourself.
  • Survivor Guilt: Guilt that you will be able to continue with your life while they won’t.
  • Heightened Concern: You may find yourself extremely concerned about their emotional, physical, or spiritual issues.
    • You may obsess over something insignificant because it is something you can have control over.
  • Rehearsal of the Death: You may visualize what life will be like when they are gone. You may feel guilty about this, but it is very normal and part of accepting the inevitability of death.
  • Physical Problems: Sleep difficulty, memory problems, muscle aches and pains, etc.
  • Fear of Loss: Fears about what the future will hold and who will take care of you.

Benefits of Anticipatory Grief

  • Time to have important conversations.
    • Advance directive
    • Living will
    • Funeral wishes
  • Time for forgiveness and quality time.
    • Bucket list
    • Record stories or scrapbook
  • Ability to “let go” of guilt and anger and find closure.
  • Make plans for the future.
  • Leave a legacy and create moments with family and friends.

Unfinished Business

  • Unfinished business is not only writing a will and other matters of an estate, but also being able to express appreciations and disappointments. Saying what needs to be said before they die.
  • It is very beneficial to everyone concerned to “make peace” with the person passing. Otherwise, the survivors will deal with regrets once the loved one has passed.
  • Families often need encouragement and permission to say goodbye, make peace, and heal divisions.

Anticipatory Grief in the Patient

  • People who are dying experience anticipatory grief as well
  • They are working through a type of separation anxiety. They are losing all their relationships at the same time, rather than just one, like the survivors are going through.
  • It can be overwhelming, and many times patients will withdraw and face the wall in order to try and cope with the impact of their loss.
  • It can also allow for meaning and closure.
    • Hollie told a brief story of a grandchild who came to see his dying grandmother. She said to him, “We are really going to miss each other, aren’t we?” That is so healthy.

Does Anticipatory Grief Help Grieving Later On?

  • Grief before death does not take the place of grief after death.
  • It doesn’t shorten the grieving process after the death occurs.
  • Even when one experiences Anticipatory Grief, nothing really prepares you for the actual death.
  • It isn’t a substitute for other grief, BUT it does provide time for closure that a sudden death does not.

5 Ways People Cope with Anticipatory Grief

1. Attempting to understand and assess what is happening OR trying to reframe the situation. Viewing the glass as half full rather than half empty. The focus is on what one still has and what can be done with the time available.

  • Using techniques such as journaling, guided imagery, meditation, art therapy, massage therapy, music, etc. to interact with your loved one in ways he/she is able to with current limitations.
  • Spend meaningful time with your loved one. Go through photos, tell stories, laugh, reminisce, cry, etc. Connect and get the stories from them you will cherish and pass on.

2. Trying to do something about the loss. Trying nontraditional methods of medicine, seeking the opinion of another physician, etc. Looking for outside assistance.

3. Trying to control one’s own reactions to the situation. Looking for meaning and turning to sources of religious or spiritual consolation. Making efforts to heal estrangements, leaving legacies, settling estates, planning the funeral, doing a life review, and saying good-bye.

  • Nurture your spirituality. This is different for everyone. It may mean organized religion and prayer, meditation, communing with nature, or listening to meaningful music.
  • Research shows that people who are dying experience a better quality of life in the last days if they have an active spiritual life.

4. Counseling and/or Support Groups: Seek help from a Mental Health Professional if you find yourself having difficulty coping. You may be suffering from “complicated grief.”

  • Complicated grief happens when the usual responses to the death of a loved one do not fade over time and impair or prevent one from leading their normal life. It can include episodes of rage, an inability to focus on anything but the death, excessive avoidance of others, intense emptiness, problems accepting the reality of the death, self-destructive behavior, episodes of rage, and/or suicidal thoughts or actions.

5. Give Your Loved One Permission to Die and Practice Forgiveness

  • Forgiveness is healing
  • Forgiving yourself is just as important as forgiving others
  • Resolve difference
  • Listen: is it important to love or to be right?
  • Resentment is a poison you prepare for another and drink yourself.
  • Letting go of resentment and hurt is freeing
  • It’s not uncommon for someone to hang on until they are given permission to go. Consider reassuring them that you and/or their family is going to be okay and it’s okay for them to go.

The Reality of Dementia

  • She/he is both gone and still here
  • I take care of both him/her and myself
  • I am both a caregiver and a person with my own needs
  • I both wish their dementia journey was over and wish that my loved one keeps on living
  • I am both sad about my lost hopes and dreams and happy about some new hopes and dreams

Summary

  • Talking about ambiguous and anticipatory grief can be very difficult and exhausting, but we can help ease the pain of both by simply acknowledging them in ourselves and others.
  • These types of grief are things we will all go through in our own way and in our own time. Do not put a timeline on your grief or compare yourself to others.
  • Don’t underestimate how you will be affected.
  • Give yourself permission to grieve at your pace.
  • You will never forget the sacred time you spend with someone as they transition from this life to the next.

It is a blessing to go through the caregiving journey with someone we love if we choose to see it that way. Change your thinking from, ‘I have to take care of…’ to ‘I choose to take care of…’

——————————

Questions and Listener Comments

Q. A listener asked what could be done for a cousin who suddenly lost her 25-year-old daughter to complications from diabetes at Easter 2021. Her cousin says she doesn’t want to live anymore. The one-year anniversary of her daughter’s death is nearing, and the listener is concerned for her cousin.

A. Hollie explained this would be a case of complicated grief because it has gone on longer than six months and she is talking about not wanting to live IF she is also not able to function in daily life. That means bathing, dressing, eating well, going to work, etc. If she can perform daily tasks, it is conventional grief.

The listener says her cousin is functioning well and seeing a grief counselor, but she doesn’t know how much help the grief counselor is.

Hollie went on to explain that her cousin is saying what she’s feeling, which is good, even if we don’t know how to respond. We would all feel the same way. Validating her feelings with words like, “This must be so hard. I’m so sorry this happened to you. I am here for you 24/7.” If you have been through something similar, you can say, “I know exactly how you feel.”

Unless her cousin gets specific about how she plans to kill herself, it’s been a year, so she probably isn’t inclined to do so.

The listener asked when her cousin is likely to get back to feeling ‘normal.’

Hollie said this often happens when an event occurs, like a grandchild being born or a move to a new location, but it usually just takes time.