Though the webinar described in this post was focused on dementia caregivers, the content of this webinar applies to all caregivers as it relates to grief and loss. It may also apply to those coping with a neurological diagnosis as well since certainly grief and loss are part of the package.
This is a follow-up to last month’s post about a Family Caregiver Alliance (caregiver.org) webinar on anticipatory grief and ambiguous loss. These two terms are defined by FCA as:
* “Anticipatory grief is the emotional pain and sadness that arises in advance of an expectant loss or death.”
* “Ambiguous loss is the confusing feeling of interacting with someone who is not fully present mentally or socially, as often happens to family caregivers who are closely involved with a person living with dementia.”
The webinar was recorded and is now available online:
Wading in Emotional Quicksand: The Powerful Role of Anticipatory Grief and Ambiguous Loss in Dementia Care
Family Caregiver Alliance Webinar
March 29, 2017
www.youtube.com/watch?v=SzOMlXzVhzo&feature=youtu.be
In the webinar, speaker Kay Adams, LCSW, shares seven rules for getting out of emotional quicksand of grief and loss, plus one bonus rule:
1. Don’t panic.
2. Get emotional relief.
3. Reassess/reevaluate frequently.
4. Lay back and relax…and breathe.
5. Take your time.
6. Use a stick (support person/people).
7. Take frequent breaks.
8. Laugh through your tears.
Brain Support Network volunteer Denise Dagan listened to the webinar recently. Here are the highlights from Denise’s viewpoint:
In this webinar, speaker Kay Adams makes the point that in the case of long-term illness both the care recipient and care giver suffer many losses. It is only human to grieve those losses as they occur, and each person’s grieving process will be different. She offers some strategies to aid in the process, all of which require getting past the first stage of grief, which is denial.
Educating yourself about the long-term illness with which you are dealing allows you to anticipate what demands will be made upon you as a caregiver. It is the best defense against the belief that you can do it all by yourself. Not trying to care for someone all by yourself over the entire course of a long-term illness will help prevent burnout and is the cornerstone of a good self care strategy.
Gathering others to help both carer and caree from the very beginning is the best way for both care giver and care receiver to stay socially engaged and involved in those things you love for as long as possible. It provides you both the emotional support needed to best deal with the grief of losses along the way.
Denise’s extensive notes from the webinar are copied below. The notes include the short question-and-answer session. “The Story of Rosie and Vince” is referred to within Denise’s notes. See an earlier post for that story.
Robin
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Denise’s Notes
Wading in Emotional Quicksand: The Powerful Role of Anticipatory Grief and Ambiguous Loss in Dementia Care
Family Caregiver Alliance Webinar
Speaker: Kay Adams, LCSW
March 29, 2017
Kay begins by giving a brief timeline of her work history and what brought her to working with dementia and grief, and the definitions of anticipatory grief and ambiguous loss. She has several quotes from the recommended reading material which she shares throughout this talk.
As a practical example she reads “The Story of Rosie and Vince” about an older women who came into the clinic for cognitive testing due to memory changes. Dementia ran in her family. Her husband accompanied her to the appointment and had his own terminal diagnosis. Rosie had been a successful professional and had been compensating well so her diagnosis was probable Alzheimer’s in moderate stages.
Consider that Rosie is grieving the impending loss of her husband due to his illness as well as the loss of herself to dementia, while Vince is grieving the loss of her wife’s ability to participate in their relationship and daily life as she had before her memory difficulties, along with the burden of caring for her and himself, both now with serious illnesses.
Signs and Symptoms of Anticipatory Grief: Tearfulness, anger, loneliness, anxiety and depression, guilt, desire to talk or withdraw, fear, fatigue, emotional numbness, poor concentration, forgetfulness.
Recommended reading:
1. “Relentless Goodbye, Grief and Love in the Shadow of Dementia” by Ginnie Horst Burkholder. Ginnie’s husband had Lewy Body Dementia. The book started as a journal so it is a series of thoughts, experiences, etc.
2. “Rising Strong” by Brene Brown.
“Grief is the emotion we perhaps fear most.” Three most foundational elements of grief are loss, longing and feeling lost.
Loss
* Loss of what could be
* Loss of what we thought we knew or understood about something or someone.
* Thoughts of: This wasn’t supposed to happen. This wasn’t how things were supposed to go.
Longing
* Not a conscious thing
* An involuntary yearning for wholeness, opportunity, for meaning
* For the opportunity to regain or even simply touch what we’ve lost
* Can come out of nowhere and be triggered by something you didn’t even know mattered.
* Speaker gained 30 pounds in 6 months between her dad’s diagnosis and death trying to fill the emptiness, loss, and longing.
Feeling lost
* Feeling your loved one is far away, uncertain, not sure what steps to take.
Grief requires us to reorient ourselves to every part of our physical, emotional and social worlds. In caring for dementia we must do this repeatedly over the progression of dementia and losses in the abilities of our caree.
* The more difficult it is for us to articulate our experiences of loss, longing, and feeling lost, the more disconnected and alone we feel.
* Coping strategies— writing down experiences of heartbreak and grief. Making clear to themselves what they were feeling, so they could articulate it to others without having to explain or justify their feelings.
If you speak with others about your grief it should be to those who get what you’re going through, not someone who has no clue. If someone cannot relate, he/she is not helpful.
Stages of Grief (Elizabeth Kubler Ross)
* Denial
* Anger
* Bargaining/Guilt
* Depression
* Acceptance
[Denise’s note: I would add since her book was published in 1969, it is understood these stages are not necessarily sequential, and over the many years caring for dementia (and other long-term illnesses) they will wax, wane, overlap, repeat, etc. Be patient with yourself and others grieving around you.]
Denial
* Hoping the person is not ill
* Expecting the person will get better
* Convincing yourself that the person hasn’t changes
* Attempting to normalize problematic behaviors
Anger
* Frustration with the person
* Resenting the demands of caregiving
* Resenting family members who can’t or won’t help
* Feeling abandoned
Bargaining/Guilt
* Wondering if you did something to cause the illness
* Feeling bad if you enjoy life, or feeling like a failure
* Wishing the person would go away
* Having unrealistic expectations of yourself… “I should have done _____ ” Especially common to have promised never to put your loved one in a nursing home and feeling guilty that you have.
Depression
* Feeling overwhelmed by loss
* Crying frequently
* Withdrawing from social events of needing more connection with others
* Withholding (stuffing) emotions or displaying them more openly
* Women tend to feel more comfortable becoming depressed in expression of grief, rather than expressing them constructively. Grief can also come out in erratic behaviors.
* Other symptoms can include: difficulty focusing, sleeping too much/too little, changes in appetite, increased irritability, feelings of worthlessness/helplessness/hopelessness, loss of interest or apathy, persistent sad or empty feeling.
Acceptance
* Learning to live in the moment & let go of the past
* Find personal meaning in caring for someone and railing the PLWD IS doing the best they can
* Embracing your fried instead of living in resistance
* Think of acceptance of home plate in baseball. You run around the bases of denial, anger, bargaining, and depression and when you get to acceptance, you find some relief.
* Sadly, when caring for dementia you may grieve each loss separately as they happen one by one; bill paying, cooking, medications, dressing, eating, bathing, etc.
Quicksand (Emotional quicksand is the visualization concept of her grief talk.)
* Definition: “Loose wet sand that yields easily pressure and sucks anything resting on or falling into it.”
Avoiding emotional quicksand starts by recognizing common quicksand areas:
* Receiving a diagnosis of dementia
* Loss of normalcy and time to yourself
* Loss or change in the relationship
* Loss of driving privileges and financial stability
* Loss of independence, and hope for the future that you had planned for.
Look for Ripples
* Be on the lookout for ground that appears unstable. This requires looking ahead, not being in denial.
* Know that the grief is going to come.
* It’s not a matter of IF, but WHEN changes will be required to properly care for your loved one.
* It’s best to plan for these eventualities when you are not in crisis mode, and that requires acknowledgement of eventual diminished abilities on their part.
Test the ground in front of you with your walking stick. Is there quicksand in front of you?
Your walking stick is a good friend, faith, support group, etc. to help you see the reality of the situation and offer emotional support.
How to get out of emotional quicksand; seven rules for survival:
1. Don’t panic. Think of how thrashing about in quicksand makes you sink faster.
* Know that your feelings of anxiety, fear and overwhelm are normal.
* Find an outlet for your feelings and express them in an environment that feels safe. Faith, or support group, especially.
2. Get emotional relief.
* If you are wearing something heavy (like a load of grief, guilt and regret), unstrap it immediately and drop everything.
* Understand that it is “real grief” that you need to work through.
* Figure out ways to “let go” so grief doesn’t stop you in your tracks and sink you.
* Daily relief suggestions: prayer, favorite TV show, coffee or tea break, meditation, exercise, a movie
3. Reassess/reevaluate frequently.
* If you feel your feet (or spirit) getting stuck…take steps backward and reassess before the quicksand takes hold.
4. Lay back and relax…and breathe.
* Sit down and lean back if your feet are stuck fast.
* Breathe deeply…it will help you remain calm and buoyant in hard times. It actually helps you think better.
5. Take your time.
* Frantic movements will only hurt your cause.
* Take it slow so that the steps you do take really count when it matters.
6. Use a stick (support person/people)
* Carry a walking stick (a support person) any time you’re in quicksand country.
* It can be helpful to shift your focus from the anticipated decline or death of a person, to celebrating what you still have left.
* Cry and grieve the loss of what was, so you can move forward and be effective as a caregiver.
7. Take frequent breaks.
* Extracting yourself alone from quicksand can be exhausting. Conserve your energy before you become too fatigued.
* Grief must be fully experienced before you can move on. You need to take breaks and allow yourself ftp grieve the losses (and there are many!) along the way.
* Stay involved in your hobbies, faith, friendships, etc. to reduce stress and increase energy to be available for your caree.
Bonus rule 8. Laugh through your tears.
* It increases endorphins in your brain, which relieves pain and stress. Caregivers have more cortisol (stress hormone) than others. Endorphins balance the cortisol.
Being in resistance and in denial…only makes matters worse!
Reach out to others who understand and can help. You can’t care for someone throughout the length of dementia alone.
Celebrate the good moments, and grieve what can no longer be – away from your caree, so you don’t increase their stress.
Use grief to build inner strength as care partners.
We ALL have our unique journey of grief. Embrace it.
We must embrace pain and burn it as fuel for our journey.
Question & Answer Session:
Q: How can she help her siblings come to grips with mom’s dementia diagnosis, or must they come to acceptance in their own way?
A: You can only gently, lovingly, nudge them toward acceptance by sharing your own experience and changes you are grieving about the changes in Mom. Use “I” messages and your own reality to help them join you in the same place. Every family member’s stage of grief is going to change over the course of changes in their mother, so be patient with everybody.
Q: Well meaning friends and co-workers don’t seem to understand. Visitors don’t see the worst. Caregiving wife feels isolated. How can she share with them what she’s going through?
A: We each have our own unique grief journeys, and our society doesn’t discuss it or deal with it well. Anticipatory and ambiguous grief is a new concept for many people. Invite them to listen to what things are like from your perspective as their caregiver and what you’ve already lost in your relationship due to dementia. If they can imagine being in your shoes, they will begin to understand and empathize.
Q: Would it be a good idea to bring up anticipatory and ambiguous grief in my support group?
A: Absolutely! It is common for a caregiver to say, “Why should I feel sad? He/she is the one with dementia.” These people don’t realize they are grieving their loved one’s losses just as much as the person with dementia is grieving their own losses. Making everyone aware that they are both grieving will reduce stress, bring people closer, eliminate ignorance of these types of grief, and help people work through their caregiving journeys.
Q: In terms of quicksand and having something heavy (emotional baggage) you must drop. That’s hard. How to let go?
A: Support groups, coffee with a friend, confession of your raw feelings whether to a person or your journal. Educate yourself about the disease so you know what you’re dealing with and how to do the best you can. Relieve these feelings daily in some way.
Q: What are common mistakes people make when being thrown into the role of a dementia caregiver?
A: Dealing with Alzheimer’s begins with memory issues, but that is only the initial symptom. When given the diagnosis of dementia, you must understand that when the whole brain becomes involved there are more symptoms to come. Underestimating the demands that will be put upon you and thinking you can care for someone by yourself is a mistake. Learn what to expect and start gathering people along the way to help in as many ways as they can. Both you and your caree will need them.
