Neurological Disorders Playlist? (Dysautonomia Playlist)

Dysautonomia or autonomic dysfunction is a set of symptoms that commonly occurs in multiple system atrophy and, to some extent, Lewy body dementia.  Here’s a playlist of 25 therapeutic music videos/songs from the Dysautonomia Support Network (dysautonomiasupport.org), which posts its blog on The Mighty:

https://themighty.com/2017/03/dysautonomia-songs/

Despite the playlist title — “The Ultimate Dysautonomia Playlist” — I think this is a great playlist for anyone coping with a challenging neurological condition.

Palliative care at any stage and earlier conversations about patients’ goals

This recent article in the New York Times by Dr. Dhruv Khullar argues in favor of (a) palliative care that is driven by patient need, not disease prognosis, and (b) earlier conversations about patients’ goals at the end of life.

Dr. Khullar makes the point that:  “Despite growing recognition that more care isn’t necessarily better care, particularly at the end of life, many Americans still receive an enormous dose of medicine in their final days.”

Some data shared in the article include:

* “On average, patients make 29 visits to the doctor’s office in their last six months.”

* “In their last month alone, half of Medicare patients go to an emergency department, one-third are admitted to an I.C.U., and one-fifth will have surgery — even though 80 percent of patients say they hope to avoid hospitalization and intensive care at the end of life.”

* “Medicare spending for patients in the last year of life is six times what it is for other patients, and accounts for a quarter of the total Medicare budget — a proportion that has remained essentially unchanged for the past three decades.”

Here are a few more excerpts:

* “Two interventions have consistently been shown to help patients live their final days in accordance with their wishes: earlier conversations about their goals and greater use of palliative care services, which emphasize symptom control and greater psychological and spiritual well-being — and which recognize that longer survival is only part of what patients want.”

* There is a push underway “to separate palliative care from end-of-life care. Many argue that palliative care…should be considered at any stage of a serious illness — not just at the end. Its use should be driven by patient need, not disease prognosis. … The vast majority of patients say they would want palliative care for themselves and their family members if understood as an ‘extra layer of support’ during serious illness.”

* “But physicians still tend to conflate palliative care with hospice care, and many don’t feel comfortable engaging in these delicate discussions.”

Here’s a link to the full article:

www.nytimes.com/2017/05/10/upshot/were-bad-at-death-first-we-need-a-good-talk.html

End-of-Life Care
We’re Bad at Death. Can We Talk?
Dhruv Khullar
May 10, 2017
The New York Times

“Women’s Friendships, in Sickness and in Health” (NYT)

Though the title of this article suggests the content is limited to “women’s friendships,” I think it’s about all friendships.

The first sentence of this article says exactly what it’s about — “A silver lining in the dark cloud of serious illness — your own or a loved one’s — is the help and caring offered by friends, and the way that help can deepen friendships.”

The article also addresses losing some friends through an illness. The example given is a woman lost her friends at the time her husband was coping with Parkinson’s.  The woman wondered:  “If a friend isn’t there when you need her, what is a friend?”

Here’s a link to the article:

www.nytimes.com/2017/04/25/well/family/womens-friendships-in-sickness-and-in-health.html

Women’s Friendships, in Sickness and in Health
By Deborah Tannen
New York Times
April 25, 2017

Food for thought….

“Grieving Before A Death: Understanding Anticipatory Grief”

I stumbled today across the “What’s Your Grief” website (whatsyourgrief.com).  They seem to be selling a few things (most are reasonably priced) but the focus seems to be on providing useful information.  I thought this article on anticipatory grief — grieving before a death — was worth sharing.

Though this is directed at caregivers, many people can experience anticipatory grief — not just caregivers.

The author of the blog post has a list of 11 things to remember when dealing with anticipatory grief:

1.  Accept that anticipatory grief is normal.
2.  Acknowledge your losses.
3.  Connect with others.
4.  Remember that anticipatory grief doesn’t mean you are giving up.
5.  Reflect on the remaining time.
6.  Communicate.
7.  Take care of yourself.
8.  Take advantage of your support system.
9.  Say yes to counseling!
10.  Relief is normal.
11.  Don’t assume.

One key way to “connect with others” is at our caregiver-only support group meetings for LBD, PSP, CBD, and MSA caregivers.  Let me know if you’d like to be added to the meeting reminder email list, if you aren’t already on it.

Check out the full article below.

Robin
———————————————-

whatsyourgrief.com/anticipatory-grief/

Grieving Before A Death: Understanding Anticipatory Grief
What’s Your Grief?
about September 30, 2013

I spent a lot of time with my grandmother when I was growing up. When I was young, before I started school, my grandmother watched me while my parents worked.  I have many fond memories of walking the alleys by her house to the playground, helping her stuff grape leaves and roll cookies, playing the piano, painting our nails together, watching All My Children, and eating her delicious lentil soup.

But let me back up a bit.  Long long before that, when my mother was just a twinkle in her father’s eye, my grandparents emigrated to the United States from Greece.  They did what most good Greeks did: they opened a restaurant and they had children.  But life did what life does sometimes – it took my grandfather way too soon, leaving my grandmother a widow with two elementary-school aged children.  My grandmother ran the restaurant on her own, raising her two children in an apartment upstairs.  A vision of the American Dream, she sent her children off to college, one to the Ivy League, and one at the top of her class through college and pharmacy school.  In her retirement my grandmother moved to Baltimore.  She stayed busy as a church volunteer and as a babysitter to her grandchildren.  In her eighties she was still spending twelve hour days at the Greek Festival making loukoumades and selling pastries.

In her late eighties my grandmother had a stroke.  The years that followed brought dementia that slowly took away the fiercely independent woman we knew.  She was a version of my grandmother, a woman who was still kind, who still prayed, and who still loved having her nails painted.  But this version of my grandmother spoke less and less, came in and out of awareness, had to be reminded who we were, and could no longer care for herself.

When my grandmother died just shy of her 95th birthday in 2004 I am not sure I had ever heard the words ‘anticipatory grief’.  And yet I remember so well thinking that we had been saying goodbye over the past six years, as she had slowly slipped away.  Though she had still been with us in body, we had been slowly mourning the loss of her personality, her independence, her memory, and her awareness for years.  Remembering who she had been, it was like we had been watching her fade away.

Anticipatory Grief: the nitty gritty
Here is the thing about grief – though we think of it as something that happens after a death, it often begins long before death arrives.  It can start as soon as we become aware that death is a likelihood.   Once death is on the horizon, even just as a possibility, it is natural that we begin to grieve.

Though this is different than the grief that follows a death, anticipatory grief can carry many of the symptoms of regular grief – sadness, anger, isolation, forgetfulness, and depression.  These complicated emotions are often coupled with the exhaustion that comes with being a caregiver  or the stress of being left alone when someone goes to war or is battling addiction.  We are aware of the looming death and accepting it will come, which can bring an overwhelming anxiety and dread.  More than that, in advance of a death we grieve the loss of person’s abilities and independence, their loss of cognition, a loss of hope, loss of future dreams, loss of stability and security, loss of their identity and our own, and countless other losses.  This grief is not just about accepting the future death, but of the many losses already occurring as an illness progresses.

When we know a death is imminent our bodies are often in a state of hyper-alertness – we panic whenever the phone rings, an ambulance must be called, or when our loved one deteriorates.  This can become mentally and physically exhausting.  The same is true of watching a loved one suffer, which is almost always part of a prolonged illness.  Caring for them as they suffer takes an emotional toll on us.  These things (and others) can contribute to a sense of relief when the death eventually comes, and a guilt that can come with that relief.   These feelings are common and totally normal when someone has experienced an anticipated death.   And yet we feel guilty for this relief, thinking it diminishes our love for the person.   It doesn’t, of course, but this relief can be a confusing feeling.  We sometimes need to consciously remind ourselves that the relief does not change the deep love we had for the person, rather it is a natural reaction to the illness.

There have been numerous studies showing that anticipatory grief can reduce the symptoms of grief after a death but, as always with grief, there are no rules.  There will be times that anticipatory grief may reduce the intensity of grief following a loss, then there are many times that the grief following a death is not impacted at all.  For a great review of the research on anticipatory grief (and understanding of why much of the data conflicts), see this article by Reynolds and Botha.  What is important to keep in mind is that if you are grieving with less intensity or for shorter duration than other losses because of the  anticipatory grief you experienced before the death, that is totally normal! On the flip side, if you do not feel your grief is diminished despite it being an anticipated death, that is totally normal too!  Convenient, eh?  There is no formula for how an anticipated loss will impact us because we all grieve differently.

Things to Remember When Dealing with Anticipatory Grief
1.  Accept that anticipatory grief is normal.  You are normal and feeling grief before a death is normal.  You are allowed to feel this type of grief.   Seriously.  This is a common phenomenon that has been documented for nearly a century.  You are not alone!

2.  Acknowledge your losses.  People may say annoying things like, “at least your mom is still here” that minimize what you are experiencing.  Allow yourself to acknowledge that, though the person hasn’t died, you are grieving.  Consider journaling, art, photography, or other creative outlets to express the emotions around things like acceptance of the impending death, loss of hope, loss of the person you once knew, loss of the future you imagined, etc.  Explore mindfulness (we have a post on that here) as a way of being present and aware of the many emotions your are coping with.

3.  Connect with others.  Anticipatory grief is common among caregivers, but unfortunately when all your time is consumed with caregiving you may feel totally alone and isolated.  Seek out caregiver support groups, either in your area or online, so you can connect with others who understand the challenges you are facing, including anticipatory grief.  There is an online anticipatory grief forum that is active here if you are looking for online support.

4.  Remember that anticipatory grief doesn’t mean you are giving up.  As long as you are there for support, you are not giving up on a family member or friend.  There comes a time where we often accept that an illness is terminal and that recovery is no longer a possibility.  Though it is a reality, there can be a feeling of guilt that comes with that acceptance.  Focus on what you are doing – still supporting, caring, loving, creating meaningful time together, etc.  You are shifting your energy from hope for recovery to hope for meaningful, comfortable time together.

5.  Reflect on the remaining time.  Consider how you and your loved one will want to spend that time together.  Though what we want may not always be possible, do your best to spend your remaining time together in a way you and your loved one find meaningful.  If your loved one is open to it, you may want to discuss practical matters, like advance directives and funeral arrangements to ensure that you are able to honor their wishes (rather than being stuck having to guess what they would have wanted).

6.  Communicate.  Just like we all grieve differently, anticipatory grief is different for everyone.  Expect that everyone in your family may be experiencing and coping with anticipatory grief in different ways.  Keeping the lines of communication open can help everyone better understand one another.  If you are planning for the remaining time to be meaningful and comfortable, make sure to include all the important family members and friends in those discussions.

7.  Take care of yourself.  I know, vague and way easier said than done!!  But it is true.  Check out our posts on self-care (for normal people), yoga, and meditation for some ideas of ways to take care of yourself.  Remember the old cliché, you can’t take care of others if you don’t take care of yourself.

8.  Take advantage of your support system.  Caregiving and anticipatory grief can be a long road.  Do an assessment of your support systems so you know which people may be able to help you out (and who you may want to avoid!).  We have a great support system superlative journaling activity to help you out with your assessment here.

9.  Say yes to counseling!  I know, there are still some of you out there who may think counseling is just for wackadoos.  I am here to tell you that is just not true!  Counseling is helpful for normal, everyday people who just need a place to process complicated emotions and have some you-time.  So just say yes to counseling if you are feeling overwhelmed with the feelings of anticipatory grief.  You can check out our post on finding a counselor here.

10.  Relief is normal.  In the case of anticipated loses there can be months, years, and even decades of caregiving that can be overwhelming and exhausting (though adjectives don’t even seem like enough!).  When someone dies there can be a sense of relief that is completely normal, but that can also create feelings of guilt. Remember that feeling relief after an anticipated death does not mean you loved the person any less.  It is a normal reaction after a stressful and overwhelming time in your life.

11.  Don’t assume.  Just because your loss was an anticipated loss, do not assume this will either speed up or slow down your grief after the death.  We have said it before and we will say it again: we all grieve differently.

Hey, we have a print resource on this topic.
http://whatsyourgrief.com/product/anticipatory-grief-a-guide-to-impending-loss/

“How to have a better death” and “A better way to care for the dying” (Economist)

There are two Interesting articles in today’s Economist magazine (economist.com) that report on the “huge gap between what people want from end-of-life care and what they are likely.”  This gap was found in a survey done by The Economist in partnership with the Kaiser Family Foundation.  For the survey, people in the US, Brazil, Italy and Japan were asked a set of questions about dying and end-of-life care.

Here’s a link to the first article, which is actually a short editorial by the magazine:

www.economist.com/news/leaders/21721371-death-inevitable-bad-death-not-how-have-better-death

End-of-life care
How to have a better death
Death is inevitable. A bad death is not
Economist, Print edition
Apr 29th 2017

It cites two statistics:

* Nearly a third of Americans who die after 65 will have spent time in an intensive-care unit in their final three months of life.

* Almost a fifth undergo surgery in their last month.

Here’s a link to the second article:

www.economist.com/news/international/21721375-how-medical-profession-starting-move-beyond-fighting-death-easing-it-better

End-of-life care
A better way to care for the dying
How the medical profession is starting to move beyond fighting death to easing it
Economist International Edition
Apr 29th 2017

The second article, titled “A better way to care for the dying,” addresses what Atul Gawande, MD, calls “the experiment of making mortality a medical experience.”  It cites a few statistics:

* People in rich countries can spend eight to ten years seriously ill at the end of life.

* Many deaths are preceded by a surge of treatment, often pointless.  Nearly a third of elderly Americans undergo surgery during their final year; 8% do so in their last week.

* By 2020, 40% of Americans are expected to die alone in nursing homes.

* One international review of prognoses of patients who die within two months suggests that seriously ill people live on average little more than half as long as their doctors suggested they would. Another study found that, for patients who died within four weeks of receiving a prognosis, doctors had predicted the date to within a week in just a quarter of cases. Mostly, they had erred on the side of optimism.

* Remarkably, in three trials the patients receiving palliative care lived longer, even though the quantity of conventional treatment they opted to receive was lower.

* In one study just 43% of people who had written living wills wanted the same treatment course two years later.

Both articles are worth reading.

Serious Illness Conversation Guide and Family Communication Guide

There are two Interesting articles in today’s Economist magazine about dying and having a good death.  (I will post separately about those articles.)  The articles mention this resource:

Serious Illness Conversation Guide
by Ariadne Labs (founded by Atul Gawande, MD)

The Guide is a one-page checklist for clinicians to find out what a terminally ill patient understands about his/her condition and prognosis.  It’s also a way for the clinician to learn what the patient’s goals are.  You can find the one-page guide for clinicians here:

www.ariadnelabs.org/wp-content/uploads/sites/2/2015/08/Serious-Illness-Conversation-Guide-5.22.15.pdf

The Guide for physicians refers to the “Family Communication Guide.”  You can find this short guide here:

www.talkaboutwhatmatters.org/documents/Providers/SI-Family-Communication-Guide.pdf

This might be a useful resource to generate family discussion when someone has a neurological diagnosis.  “This booklet can help you talk with your loved ones about your illness and the future,” according to the guide.

Report on health brain aging summit; pathology explains only 40% of cognitive decline

Earlier in April, the National Institute on Aging (NIA) held a summit on healthy brain aging, focusing on cognitive reserve and resilience.  “The idea is that cognitive reserve helps the brain preserve cognition in the face of ongoing pathology, and if scientists better understand the processes involved, maybe they can boost reserve.”  One thing holding researchers back is that there isn’t a good definition of “cognitive reserve.”  One researcher proposed that “reserve modulates the effect of injury on cognition, such that for a given degree of pathology, people with more reserve show less cognitive decline.”  Similarly, there is no definition for “resilience” or “compensation.”

Alzforum has an interesting report on the NIA conference.  The report is a good reminder that pathology in the brain is not the whole story.  According to one research at Rush, neuropathology explained “only 40 percent of the cognitive decline.”

Here are some excerpts:

“Scientists generally accept that education and intellectual enrichment contribute to cognitive reserve, and that people with a lot of it live dementia-free longer. Beyond that, the concept remains something of a black box.”

“What can researchers glean from studying people, notably the lucky few who make it into their 80s and 90s with crystal-clear memories? Some of these spry minds have advanced pathology in their brains, while others harbor genetic risk factors for cognitive decline.  Data from the 90-plus study…suggest that at very old ages, the amount of amyloid in the brain has little bearing on how fast people decline cognitively in the years before death. In fact, the eight highest performers on memory tests who have come to autopsy had a wide range of pathology, ranging from little to full-blown plaques and tangles. This adds to evidence that a low pathology burden doesn’t explain better memory in older people, [the UC Irvine researcher] concluded. In support of that idea, Patricia Boyle, Rush University Medical Center, Chicago, analyzed 1,200 autopsied brains from the Rush Memory and Aging Project and found brain pathology explained only 40 percent of cognitive decline. That leaves 60 percent of total impairment unexplained, she said.”

“One possibility comes from the lab of Emily Rogalski, Northwestern University, Chicago. Her data suggest that atrophy, or the lack thereof, may play a role in resilience to age-related memory loss. She reported in the April 4 JAMA that the cortices in a cohort of 24 superagers—people over 80 with episodic memory scores typical of middle age—shrank at half the rate of the average 80-year-old.”

“Scientists led by Adam Gazzaley, University of California, San Francisco, have been creating games to improve cognition. How can they tell if those games have lasting benefits over time that generalize to daily activities? … He described efforts to construct double-blind trials using ‘placebo’ games. These games are designed to seem beneficial to participants, without actually exercising the cognitive domains being tested.”

The full Alzforum blog post can be found here:

www.alzforum.org/news/conference-coverage/nih-summit-examines-what-makes-healthy-aging-brain

Robin

“Why Many People Abandon Friends and Family” (Wall Street Journal)

Though this article is titled “Why Many People Abandon Friends and Family with Dementia–and Shouldn’t,” I think the concepts apply to those with any neurological disorder, not just dementia. Many with neurological disorders are abandoned by their friends and family.  (Or maybe I should say they are abandoned by their supposed friends and family.)

This blog post from a recent Wall Street Journal (wsj.com) is authored by Marc Agronin, MD, a geriatric psychiatrist in Miami.  He says that there’s “a lot that can be done to break negative and avoidant behaviors that impede the care and quality of life for individuals with various forms of dementia.”

Dr. Agronin suggests five basic strategies “to banish the fear and avoidance of individuals with dementia and their caregivers.”  These approaches “can make all the difference by helping them to have greater dignity, well-being and quality of life.”  The five strategies include:

1. Educate yourself about this disease.
2. Recognize the strengths that still exist.
3. Lend a hand [to the person with a disorder and their caregiver].
4. Offer some relief [to the caregiver].
5. Become an advocate for…disease awareness, early detection and research.

Here’s a link to the full article:

blogs.wsj.com/experts/2017/04/23/why-many-people-abandon-friends-and-family-with-dementia-and-shouldnt/

The Experts/Retirement
Why Many People Abandon Friends and Family with Dementia–and Shouldn’t
By Marc Agronin
Apr 23, 2017 10:01 pm ET
Wall Street Journal

Robin

 

Supporting, and getting support, from loved ones after a diagnosis

Though this newspaper article is about dementia, I think most of the concepts apply to everyone with a neurological diagnosis.

In Monday’s article in The Sacramento Bee, retired journalist Kent Pollock writes about his dementia diagnosis and how many with a dementia diagnosis struggle to receive support from their loved ones.

The article is here:

www.sacbee.com/news/local/health-and-medicine/article144682519.html

HEALTH & MEDICINE
APRIL 17, 2017 8:00 AM
Supporting, and getting support, from loved ones after a dementia diagnosis
By Kent Pollock
Special to The Bee

Robin

 

“Anticipatory Grief and Ambiguous Loss” – Webinar Notes

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

—————————–

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.