Recently, Janet Edmunson (janetedmunson.com) hosted a webinar on “Understanding Anticipatory Grief.” Anticipatory grief is the grief we experience before a loved one dies, and is common when dealing with a loved one with a degenerative condition. This webinar is appropriate for all caregivers.
I’ve known Janet for almost 20 years. She cared for her husband Charles, diagnosed during life with progressive supranuclear palsy and upon death with corticobasal degeneration. If you are interested in brain donation for yourself or a loved one — so that you may confirm the diagnosis and enable research — check out our website.
Janet’s webinar can be viewed here: (registration required)
Adrian Quintero, with Stanford Parkinson’s Community Outreach, listened to the webinar and shared his notes.
“Understanding Anticipatory Grief”
Webinar by Janet Edmunson
March 17, 2020
Notes by Adrian Quintero, Stanford Parkinson’s Community Outreach
Janet Edmunson took care of her husband Charles during the five years he faced a movement disorder with cognitive issues, which was later confirmed to be corticobasal degeneration (CBD), an atypical Parkinsonian disorder.
“No one ever told me that grief felt so like fear.” C. S. Lewis (who lost his wife)
Janet was already experiencing grief, and Charles hadn’t even died. It was a growing fear and sadness of what life without Charles would be like, as well as what he was thinking and feeling throughout his illness. The last year of his life he couldn’t talk and express any thoughts or fears to her. She encourages people to have these conversations with loved ones if at all possible.
“Grief is the conflicting group of human emotions caused by an end to or change in a familiar pattern of behavior.” A definition of grief from James and Friedman, The Grief Recovery Handbook.
These changes come from the death, but they come long before the death.
The grief we experience before a loved one dies is called anticipatory, or incremental, grief. It is composed of many losses along the way, moving towards the ultimate grief, death.
In addition, there is likely fear, dread, and worry about what the death will be like.
— What will it be like for the loved one during the dying process?
— What will your life be like after the person died?
— Will I be up for the challenge of how life is different?
In the caregiving experience, you may be making meaning, giving the loved one the best life they can have, etc.
Janet had a fear she would “fall apart” after her husband’s death.
What are the losses?
— The loved one may experience loss of abilities, such as reading, writing, walking, and talking
— Loss of quality of life
— Past loss – moments that won’t happen again (such as trips together)
— Present loss – reduced social life, los of shared activities, etc.
— Future loss – events going forward that won’t be able to be shared. (For example, having a partner into one’s old age)
Concurrent stressors can compound anticipatory grief
— All the things that are needed to provide care or coordinate care for loved one
— Taking care of the house
Anticipatory grief is different from grief after death
Even if you are experiencing anticipatory grief from a loved one having a degenerative disease, doesn’t mean you will have less grief after the loved one dies. The experience can be as difficult as losing someone suddenly. Death is a new dimension of grief.
Positive and negative can sit together
Just because we are feeling negative emotions such as sadness and fear, doesn’t mean we can’t also experience positive emotions, such as:
Positivity puts the breaks on too much negativity. For grieving spouses, they need and want positive and emotions in their lives.
“Experiencing humor, laughter and happiness was strongly associated with favorable bereavement adjustments.”
This also applies to those of us experiencing anticipatory grief. Positivity matters, especially during trying times. It helps us to have resilient outcomes, and recover from grief faster. It’s important not to feel guilty when you find yourself feeling such things as joyful, full of love, or grateful.
There is something called the Twelve Freedoms of Healing in Grief. These are a few of them.
You have the freedom to:
- Talk about your grief
- Allow for numbness
- Experience grief attacks or memory embraces
- Allow a search for meaning
- Treasure your memories
Affirmations for Emotions
It’s okay to mourn what might have been. With a progressive and degenerative illness, Potential or promise for someone’s life may never been realized. (The person may pass in middle of career).
From The Grief Recovery Handbook: The authors say every relationship has things that are incomplete. It might help to mourn what could have been by asking:
What do you wish was..?
The authors continue to say, what we can do is apologize, forgive (ourselves and our loved one), and verbalize. We can do this in a letter that is never sent. Writing it down can be helpful.
- Dad, I apologize for…
- Dad, I forgive you for…
- Dad, I want you to know…
I’ve already lost him/her. Maybe the person is no longer able to talk. Perhaps there is a moment where you realize you cannot go to the loved one for the advice you normally would seek from them.
A book that Janet found helpful was Getting To The Other Side Of Grief. It asks probing questions to help understand the feelings of your loss. Questions such as:
- What do I value most about our relationship?
- What special memories do I have of my loved one?
- What will I take with me to cherish?
Defining what you’ve lost can help you to grieve.
I reflect on our love. Janet has a framed poem he wrote her. She encourages people to pull out old letters or cards, or look at old photos and videos to reflect on when things were good.
I welcome my tears. You never know when the tears will come. People talk about them coming in waves. There may be a song that comes on that touches you and floods you with feelings. Tears are a way to honor your loved one; they don’t have to be bad. You wouldn’t be crying if you didn’t love the person. If, however, you are crying all the time, Janet encourages you to go to a support group, talk to a clergy member or a counselor.
I let the love flow, even when all else is lost. She encourages reading the book Tuesdays With Morrie, about the relationship between a sociologist and a man with ALS. Ted Koppel did an interview with Morrie, who was losing his ability to speak, and Morrie’s best friend was losing his ability to hear. Ted asked Morrie, what will it be like to be together, and Morrie replied, “Lots of love will be passing between us.” When all else is lost, find the simple presence together, letting the love flow between you and your loved one. It may be a touch.
Affirmations for Meaning
I create meaningful traditions. Maybe you and your loved one can’t go out to a restaurant anymore, but you can have a special meal at home. Perhaps there is a special drive you can take together through nature.
What traditions will you continue?
What traditions will you start? Date night? Family dinner? Grandkid day? Game day? Daily walk (or wheelchair ride) in the neighborhood?
I find acceptance. Janet recommends the Serenity Prayer:
God grant me the Serenity
To accept the things I cannot change
Courage to change the things I can
And the wisdom
To know the difference
“The way to accept it is to make meaning out of it” — Peg B, an instructor from a mind/body course for people with medical conditions.
Questions to consider:
— What is this teaching us?
— What is this experience giving us?
— How will it help each of us grow?
I have things to look forward to. This might be a difficult affirmation if you are far along in the journey with your loved one’s disease. You’ve lost so much already, what is there to look forward to? More losses? You don’t have to look too far forward; it can be in just the next two weeks.
Right now with the Covid-19 virus, it can be hard to look too far forward, as we don’t know what is going to happen in the next couple weeks. Some things you may be looking forward to, like a visit from the grandkids, are not going to happen in the next two weeks. We can all look forward to the little things- a loved one’s smile, enjoying dessert together, etc.
Things to remember when it comes to anticipatory grief
- Accept that it is normal
- Acknowledge your losses
- Connect with others (even by phone or Facetime)
- Reflect on the remaining time
- Take advantage of your support system (so you have the emotional energy to get through this)
- Say yes to counseling
Getting To The Other Side Of Grief by Zonnebelt-Smeenge and De Vries
The Healing Journey Through Grief by Rich
The Grief Recovery Handbook by James and Friedman
Tuesdays with Morrie by Mitch Albom
How do I handle grief if my marriage was not a good marriage? (From a woman who is the caregiver for her husband, but feels he didn’t really love her)
You are not alone, talk to others who are in a similar situation. Reading the Grief Recovery Handbook could be helpful, and asking the questions from before of “what do I wish was different?” etc. Acknowledge the courage and strength you have for caring for him given this situation.
Any advice on hospice?
It’s never too early to ask about hospice. You can go two routes- you can talk to one of your doctors and you can ask for a referral to hospice. The other option is you can also call hospice directly, and they will come in and do an evaluation and decide if it’s time (they decide yes or no). They will tell you all about their rules, each hospice is a little different (all managed by MediCare). When they come in, they take over the care, they are the primary now, they can talk to your doctors. They all usually have social workers, and spiritual counselors as well. They have nurses, aides and volunteers as well. You can interview more than one hospice; or change if one isn’t working. You are in the driver’s seat.
Many hospices have bereavement groups or information, and you don’t have to be on hospice to have access to those.
Janet is partial to bereavement groups that have a start and an end date, rather than ones that are ongoing.
“When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight” Kahil Gibran