Category Archives: Caregiving – Dementia

“Anticipatory Grief and Ambiguous Loss” – Webinar Notes

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“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

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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.

Creating a care plan in 10 steps (from caring.com)

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Creating a care plan in 10 steps (from caring.com)

Although the article described below is titled “10 Steps to Creating a Dementia Care Plan,” I think nine of the steps apply to all caregivers, whether dementia is part of the picture or not.

The ten steps are:

* Step 1: Know the type of dementia.
(Robin’s note:  to make this more generic, I’d change this to “Know the diagnosis.”)

* Step 2: Connect with the Alzheimer’s Association.
(Robin’s note:  not necessary if you aren’t dealing with dementia.  And many caregivers for those with non-Alzheimer’s dementia would argue that the Alzheimer’s Association doesn’t know much about non-AD dementias.)

* Step 3: Start early.

* Step 4: Address current concerns.

* Step 5: Find out how much money and coverage is available for care.

* Step 6: Figure out where your loved one will live now.

* Step 7: Identify situations that will force change.

* Step 8: Talk to a lawyer.

* Step 9: Ask for help if you need it.

* Step 10: Take care of the caregiver.

If developing a care plan sounds daunting, note that there are some good resources available to help you.  You can:

* hire a geriatric care manager (caremanager.org).  These are often social workers or RNs.

* hire a social worker from a home care agency, from Family Caregiver Alliance (caregiver.org) if you are in the San Francisco Bay Area, or from one of the other California caregiver resource centers if you are in CA (caregiver.org/californias-caregiver-resource-centers)

* hire a law firm with a care planner on staff.

The full article is copied below.

Robin

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www.caring.com/articles/dementia-care-plan

10 Steps to Creating a Dementia Care Plan
January 24, 2017
Caring.com
By Madeline Vann, MPH

Creating a care plan for your loved one with dementia can give you and your family a way to anticipate and deal with the changes the illness brings. But you’ll also need time, a willingness to learn and an open mind to ensure that your loved one’s plan is well suited to him or her.

Dementia care planning breaks down into broad categories such as learning about your loved one’s type of dementia, facing logistics such as daily living and safety, medical care, and the emotional needs of all involved. There is no standard dementia care plan, however, because each person with dementia and their families are unique.

“The first thing I want to tell families is that nothing in your life has prepared you to be a caregiver,” says Nancy Alterman, LCSW, a geriatric social worker and a clinical instructor at the New Jersey Institute for Successful Aging (NJISA), part of the Rowan University School of Osteopathic Medicine.

This guide can help you get started with your loved one’s dementia care plan.

Step 1: Know the type of dementia.

“What we mostly talk about is Alzheimer’s disease because it is the most common [type of dementia],” says Alterman. But, she points out, there are many other types of dementia. Each form of dementia follows a different course over time. And each type, in combination with other health conditions your loved one may have, could require different approaches to management, either at home or in a memory care community. Getting a correct diagnosis and learning about the type of dementia your loved one has will help you plan.

At this stage, you might want to create a binder that will contain contact information for everyone involved in your loved one’s health care, including medical personnel, as well as information about the dementia and working documents related to the steps you’re taking to create a dementia care plan.

Step 2: Connect with the Alzheimer’s Association.

The Alzheimer’s Association provides a lot of information online, offers a free, 24-hour helpline, and hosts support groups throughout the country. Even if your loved one has a dementia other than Alzheimer’s disease, you can find information and local support for your whole family through the association.

Step 3: Start early.

It’s easy to put off planning, either because your loved one has days when everything is close to normal, or perhaps because you don’t want to grapple with difficult questions.

“We know that when people do plan early, as hard as it is, it’s like giving themselves and their families a gift. They’ve had those complicated conversations, they’ve made decisions, and so when they get into the more challenging stages of the disease, they’ve already talked it through and made a plan,” says Ruth Drew, Director of Family and Information Services with the Alzheimer’s Association. Perhaps the most important reason to start early with creating a dementia plan is that the person with dementia may still be able to express their preferences for care in the future.

Step 4: Address current concerns.

Plan around the problems that you and your loved ones are currently facing with dementia. The Alzheimer’s Association offers an online navigator tool to help you plan around your current situation. Consider whether you need solutions to problems with:

• Communication. Is it time for family members and caregivers to get some pointers from a dementia care expert about how to communicate well with someone who has dementia? Rebecca Axline, a licensed clinical social worker (LCSW) with Houston Methodist Hospital’s Nantz National Alzheimer Center, explains that communication strategies will depend on the type of dementia your loved one has. “Someone who has vascular dementia can be triggered to remember things while someone with Alzheimer’s disease can not,” says Axline. In some cases, family members will have to learn how to avoid unnecessary arguments with the person who has dementia.

• Emotional health. “Is the person with dementia dealing with anxiety and frustration, feeling like they are not at home when they are, or are they forgetful and confused but overall very content?” asks Drew. You might need to talk to a doctor or therapist about emotions that make everyday living difficult for your loved one.

• Medication management. Is your loved one able to take their prescribed medications at the right time, and not repeat doses?

• Money management. Is your loved one still able to handle money and balance their checkbook? Who will help or take over their finances when he or she can no longer manage? Be aware that financial scammers may target older adults with cognitive problems , so it’s wise to monitor your loved one’s finances.

• Safety. Is your loved one wandering, unsafe around appliances such as gas stoves, or losing their balance and vision? Can your loved one drive safely alone? Each safety challenge has its own solution.

• Sleep. Is your loved one’s sleep pattern changing? How is that affecting family life? Significant sleep changes can accompany some dementias.

Step 5: Find out how much money and coverage is available for care.

Take a look at any insurance plans, long-term care plans and other dementia care financing options so you know how much money your loved one has available. If this step is overwhelming, find a professional, such as a social worker experienced in dementia care, with the expertise to guide you. In some cases, the details of coverage for dementia care could determine where your loved one will live.

Step 6: Figure out where your loved one will live now.

Alterman is an advocate for moving to an assisted living community that offers memory care soon after a dementia diagnosis.

“If you go soon enough, you can almost guarantee you will never need a nursing home,” she says. The additional benefit to moving in sooner rather than later is that you will learn your way around the facility before too much damage is done to learning and memory. But, she says, make sure you choose a facility with a memory care wing. “At some point, you will need specialized care.”

However, some families prefer for their loved one to stay home for as long as possible if the family is large enough and close enough, geographically, to support them. This is a part of the dementia care plan that will likely change over time.

Consider issues such as:

• Who is available to help care for your loved one over time? Are they available to provide care at home, or will they be helping to oversee care at a facility?

• Is it better for your loved one to stay in their current community or move closer to a friend or family member who can help? Are there memory care facilities in the new community?

• What other forms of support are nearby? If your loved one wants to stay home as long as possible, learn about day care programs, respite care, and home health care options in their community.

Step 7: Identify situations that will force change.

“Home becomes unsafe when someone is big on wandering or is fecal incontinent,” says Alterman. These are two reasons families decide to move a loved one with dementia into a facility, but they’re only two possible problems you might encounter as dementia progresses. Once you know what to expect from your loved one’s type of dementia, everyone involved, including the person with dementia, should talk about what kinds of dementia symptoms would require significant changes in plan, says Alterman. You may need to include your loved one’s doctor in this conversation.

Step 8: Talk to a lawyer.

If your loved one does not already have legal documents sich as a will, living will, healthcare power of attorney and financial power of attorney, make an appointment as soon as possible with a lawyer whose practice includes eldercare law. This process should allow your loved one to choose a friend or family member to make decisions on their behalf if they are no longer able to do so.

Step 9: Ask for help if you need it.

By the time you tackle the first eight steps, you’ll likely know if you or your family need someone to guide you. Axline points out that for many families, dementia care planning can be very emotional. “It’s fine to say that maybe this is just too emotionally connected and you need to get outside help,” she says.

The center where Axline works facilitates family meetings to try to help everyone involved share their concerns and preferences. You can ask a therapist, social worker, or clergy member to help organize and run these family meetings. She points out that family members may also need individual therapy if the process of dementia care planning is triggering strong emotions and conflicts.

Step 10: Take care of the caregiver.

Axline recommends taking time to grieve over changing plans and relationships, and to practice good self-care throughout the dementia care planning. This means staying on top of your own health and fitness, and maintaining your relationships and interests. Taking care of the caregiver will make it more likely that the person who has dementia will be well cared for as well.

Finally, be flexible.

“You want to start early and make a plan, but then things are going to change over time, so you might need to tweak your plan,” says Drew.

It’s a good idea to revisit the dementia care plan at least annually to make sure it’s working well. If the disease is progressing rapidly, you may need to change the plan more often.

Anticipatory Grief and Ambiguous Loss in Dementia Care – webinar on March 29

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Anticipatory Grief and Ambiguous Loss in Dementia Care – webinar on March 29

Family Caregiver Alliance (caregiver.org) is hosting a webinar on March 29 at 11am on anticipatory grief and ambiguous loss in dementia care.  FCA defines these two terms 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.”

Register for the free webinar here:

attendee.gotowebinar.com/register/7926130116569883649

The organizers suggest attendees read “The Story of Rosie and Vince.”  (copied below)

See additional webinar details below.

Robin

Announcement from Family Caregiver Alliance

Wading in Emotional Quicksand
The Powerful Role of Anticipatory Grief and Ambiguous Loss in Dementia Care

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.

This webinar will provide information and practical coping strategies to enable caregivers to understand their own unique journeys of grief, and to learn ways to remain calm and hopeful in the process.

Objectives:
* Describe the role anticipatory grief and ambiguous loss play in caregiving process.
* Identify coping strategies to effectively deal with the multiple losses involved in caring for someone with dementia.
* Discuss the seven rules of survival for how to get out of “emotional quicksand” as a caregiver.

Speaker: Kay Adams
Kay Adams, LCSW, is an educator, writer, clinician, consultant, advocate, and trainer. Through her work, she educates, empowers, and supports people living with dementia, as well as the families, caregivers, and communities entrusted with their care. Kay currently works as a clinician in the diagnostic Memory Clinic and Geriatric Psychiatry Department for Kaiser Permanente Colorado in Denver. She is also a certified consultant and trainer for Teepa Snow’s Positive Approach™ to Care.  Kay has an extensive background in hospice, mental health, grief counseling, geriatric psychiatry, and dementia. She obtained her Master’s degree in Social Work at Augsburg College in Minneapolis.

When: Wednesday, March 29, 11 a.m. to 12 noon (PT)

Where: ONLINE

Cost: No charge

Contact: Calvin Hu, [email protected], (415) 434-3388 ext. 313

Additional materials: Please see “The Story of Rosie and Vince”

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The Story of Rosie and Vince

Rosie was a vibrant woman who came into the Memory clinic intake appointment dressed to the nine’s, right down to her designer glasses. She looked at least a decade younger than her 72 years would suggest. Rosie came accompanied by her husband of 45 years, Vince. You could tell by just taking one look at them that they were still madly in love after all this time together, and it was heart-warming to witness.

Rosie was referred to the memory clinic for diagnostic testing due to memory changes. Rosie was a highly educated woman who held advanced degrees, and had been at the top of her game in her chosen professional field before her retirement 4 years ago. Rosie’s memory changes had accelerated since retiring, and her short term memory had become severely impaired. Rosie was admittedly nervous about coming in for testing because dementia ran in her family, and Rosie was petrified that her own mental decline could be leading to that same eventual outcome.

In the intake appointment, Rosie stated that a lot of her current distress was related to fretting about her husband’s health. Vince had been recently diagnosed with a terminal illness and was “living on borrowed time.” Vince had his own stressors— not the least of which was worrying about Rosie’s progressive memory changes that were now impacting her ability to be independent in many areas of her life. Most heart-wrenching for Vince was the loss the of Rosie’s ability to be an equal partner in their marriage in the way she had always been due to memory, mood and functional changes along the way. So often now, Rosie was physically present, but seemed more and more “checked out” in a world of her own that Vince didn’t understand or know how to penetrate. Vince had a lot on his plate, but his love and dedication to Rosie’s well-being by far took precedence over his own mortality concerns that day.

When Rosie and Vince returned to the follow up appointment a few weeks later, the news that they dreaded most was delivered. Our team informed Rosie that testing results indicated that she had a probable Alzheimer’s disease which was already in the moderate stages. Even though Rosie and Vince both secretly suspected that diagnosis would come, hearing the words spoken out loud pierced the fragile bubble of denial they had cautiously been living in, and life as they knew it would never be the same again.

 

“Managing the Change that Nobody Wants”

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Though this blog post was written by a caregiver to someone with Lewy Body Dementia, the thoughts expressed apply to all of us, regardless of neurological condition or role. The author, an organizational development consultant who helps business leaders achieve transformational change, shares what she’s learned about “managing the change that nobody wants.”  Here’s a link to the post:

www.avasbutler.com/managing-the-change-that-nobody-wants/

Managing the Change that Nobody Wants
by Ava S. Butler
October 6, 2016

Ava’s advice covers 13 points, some of which are:

* Cherish the beautiful moments and keep them in the forefront of your mind.

* As they say on airplanes, ‘Put your own oxygen mask on before helping others.’

* Be kind to yourself.

* Don’t be afraid of medical terms or doctors that tell you things you don’t understand.

* Talk about your predicament with forthright honesty.

* Know that others are grieving too.

* Do your best to accept your ‘new normal’.

* Help others like you find their way.

* Pray for the best and plan for the worst.

The full blog post is below.

Robin

==================================

www.avasbutler.com/managing-the-change-that-nobody-wants/

Managing the Change that Nobody Wants
by Ava S. Butler
October 6, 2016

I’m an organizational development consultant and I specialize in partnering with business leaders to achieve transformational change. I’ve lead dozens of large scale change projects, most of them moving individuals, teams and organizations to a stronger and better place. I think of change as a positive thing and managing transformational change is my life’s calling.

But not all change is wanted and not all change has a happy ending. My dear husband has Parkinson’s disease and Lewy-body dementia. Its taken over our lives. We fight a battle every day that we will not win. Richard’s ending won’t be fast and it won’t be pretty. It’s costly, time consuming and emotionally draining. No drug will save him and although there is hope for future generations inflicted with these diseases, it’s too late for Richard. We make it the best it can be, but our efforts won’t change the outcome. I’m managing the change that nobody wants.

There’s an irony to unwanted change happening to the change expert. And although my background provides helpful skills and experience, I’m in uncharted waters. I’m learning every day, if I want to or not. And I’ve got a lot more learning to go as we move forward towards our inevitable fate.

Here’s some of what I’ve learned so far. I hope its advice that you can use if you too are dealing with a change you don’t want and can’t avoid.

Cherish the beautiful moments and keep them in the forefront of your mind.

There are plenty of moments of pure hell and they will take over your consciousness if you don’t try hard to balance your thoughts.

For me it’s the tender kiss that still takes my breath away, the gentleness of Richard placing his hand on top of mine, and his beautiful blue eyes on the days they still twinkle. Or the way that Richard’s face lit up when one of his caregiver’s daughters sang him a song she learned in school that day and we all sang the ABC’s song together.

Find joy in the beauty of the world around you.

Take time to acknowledge when the sun is shining, the birds are singing, a hummingbird is outside the window, the leaves are turning or the neighborhood children are playing gleefully in the pool.

Be grateful for the big and small acts of kindness that others show you.

Be vulnerable enough to let people help in ways you would never ask for or even think of. Kindness comes from people you know and also from complete strangers who jump to action when they see you need help.

A few years ago, a man at the Safeway came to our rescue when Richard was hallucinating (due to his Lewy-body dementia) and very afraid. He was running away from me calling for help and I couldn’t get him in our car. The man stopped pumping gas to tell Richard he would help. He told Richard that he was safe and offered him his water as I finally got Richard to take his anxiety medicine. His help allowed Richard to calm down enough that I could get him home. It was early in Richard’s diagnosis and I didn’t have it down yet. I think of that kind man often and am still so grateful for his help.

Do the best that you can every day.

And know that there will be days when your best may not be very impressive. But it’s the best that you can do for that moment. And that’s all you can ask of yourself.

As they say on airplanes, ‘Put your own oxygen mask on before helping others.’

You cannot help others if you are burning out yourself. Take the time to go out with friends, take a walk, or whatever makes you happy or at least gives you a break.

Be kind to yourself.

You will make silly mistakes due to stress, and big mistakes because you didn’t know any better at the time. There are days that you will not find joy in anything and that is to be expected. But try not to beat yourself up.

Don’t be afraid of medical terms or doctors that tell you things you don’t understand.

It’s their job to explain things to you. Ask questions and paraphrase back to ensure understanding. Ask again and again until you feel comfortable understanding the information you need to manage your situation.

Talk about your predicament with forthright honesty.

This lets others talk about it too. Learn to talk about uncomfortable topics that you never thought you would.

Know that others are grieving too.

And they might say or do things that are not helpful to you. But please remember that they are trying to do what they think is best. In the event that someone is not helping you at all with their attitude or advice, don’t hesitate to ask them to give you space.

Turn yourself into a project manager extraordinaire.

Being the primary caregiver means managing lots of moving parts. Be as organized as you can. If this is not your skill set or you are too stressed out or busy to manage the many aspects of your loved one’s life, ask someone you trust to do it for you. And don’t think that once things are set up that they don’t need constant oversight. Situations can get out of hand fast without attention.

For me, I manage a fabulous team of 24/7 caregivers, monitor the cleaning schedule I created, ensure Richard is eating a balanced diet, schedule appointments, and purchase supplies and groceries. I also work and make time to be with my husband. I couldn’t do all that without being a good project manager.

Do your best to accept your ‘new normal’.

There is no point in expecting your life to be like it was before disease struck your life or like the lives of others in your peer group. Your life is different and special now and do what you can to enjoy it. Focus on what you can do instead of what you can’t.

For us, international travel was a big part of our lives, and we can’t do that anymore. We can’t travel together outside our home town of Tucson at all. But we can get in the car with a caregiver and take a trip to our local mountains for an hour.

A good day for Richard isn’t anything like a good day for a normal healthy person. Using traditional standards to measure for a successful day is neither appropriate or gratifying. Measure success by your own customized standards.

Help others like you find their way.

Take the time to share what you’ve learned with others facing the same challenges you face. I’ve learned so much through my journey and have been able to help others who are not as far along in their journey as I am. In turn, they support me too.

Pray for the best and plan for the worst.

Of course you want the best for your loved ones and yourself. Miracles do happen and I pray for and even expect one. But I also must focus on more sobering things like financial planning scenarios and what to do when Richard needs a wheelchair.

I’m not the only one managing the change that nobody wants. There are millions of people just like me, with every imaginable background and story. I hope I can help others, just as so many others are helping me.

“Understanding the Emotional Aspects of Caregiving” – Webinar Notes

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“Understanding the Emotional Aspects of Caregiving” – Webinar Notes

Home Instead Senior Care regularly hosts webinars for its caregiver employees.  Family caregivers and anyone in the community may participate.  In January 2017, they hosted a webinar titled “Understanding the Emotional Aspects of Caregiving.”

Here’s a short description:  “Caregiving can be an emotionally intense experience. Many caregivers experience negative feelings, which they may bury or deny. Doing this can lead to unhealthy emotional and physical states.”

Here’s a link to the recorded webinar:

www.youtube.com/watch?v=0WhKbXMsp24

Understanding the Emotional Aspects of Caregiving
Webinar sponsored by Home Instead Senior Care
January 2017
Speaker:  Lakelyn Hogan

Brain Support Network volunteer Denise Dagan listened to the webinar and reported the following:

“The first half of this one hour talk identifies normal emotions of caregiving.  The second half shares strategies to manage those emotions, and there is some good advice for both caregivers and professionals, particularly the first couple steps: acknowledge your feelings and release them.  It is normal to feel anxious, frustrated, or guilty for any number of reasons, but keeping those emotions bottled up just damages your health and makes you miserable.  If you can get past the feelings and take action to make your caregiving situation more manageable, both you and the person you’re looking after will be in better shape for the caregiving journey.  She has good advice for building your caregiving team by reaching out to family, friends, your church, support groups, even your employer.  Ask for help with meals, specific tasks, a flexible work schedule, or just a friendly ear or dinner companion.  Anything your caregiving team can take off your plate lessens your stress, resentment, anxiety, and frustration.”

I liked this list of the five phases of caregiving (using the example of a spouse):

– Phase 1, a wife still feels like a wife, doing her own household chores, plus some that once were her husband’s.

– Phase 2, a wife still feels like a wife, but doing almost all the household chores alone.

– Phase 3, a wife is now doing all the household chores and helping with husband’s bathing/grooming, beginning to have trouble juggling everything.

– Phase 4, husband is almost completely dependent on wife, who feels more like a caregiver and not much like a wife.  Most caregiver spouses do not seek emotional help.  She may place husband in a caregiving facility, but without assistance they remain in a caregiving role.

– Phase 5, a wife brings in outside assistance from siblings, adult children, home care, home health, or may place husband in a facility. With this support, she may be able to revert back to the role of wife.

Denise’s extensive notes from the webinar and the question-and-answer session are copied below.

Robin

================================

Denise’s Notes on

Understanding the Emotional Aspects of Caregiving
Webinar sponsored by Home Instead Senior Care
January 2017
Speaker:  Lakelyn Hogan

Theory of emotional aspects of caregiving studied for over 20 years:
* The Caregiver Identity Change Theory developed by Dr. Rhonda Montgomery and Dr. Karl Kosloski
* There are systemic gradual changes along the caregiving journey in:
– change in activities (newly required tasks)
– change in the relationship w/care receiver (especially increased dependency)
– change in identity of caregiver (from spouse or daughter to caregiver)

5 Phases of Caregiving:  Example is that of a spouse
– Phase 1, a wife still feels like a wife, doing her own household chores, plus some that once were her husband’s
– Phase 2, a wife still feels like a wife, but doing almost all the household chores alone
– Phase 3, a wife is now doing all the household chores and helping with husband’s bathing/grooming, beginning to have trouble juggling everything
– Phase 4, husband is almost completely dependent on wife, who feels more like a caregiver and not much like a wife.  Most do not seek emotional help.  She may place husband in a caregiving facility, but without assistance they remain in a caregiving role.
– Phase 5, a wife brings in outside assistance from siblings, adult children, home care, home health, or may place husband in a facility. With this support, she may be able to revert back to the role of wife.

Stopping at phase 4 or continuing to phase 5, even combining phase 4 & 5 are common.

Professional caregivers, geriatric care managers, social workers, etc. can help at any phase.  Example is helping a couple deal with phase 1 or 2, when a husband may be having to step in and make all meals when his wife always did the cooking.  This brings up emotions they may not have the skills to deal with, not to mention the learning curve for the husband in the actual cooking skill set.

Some years ago Home Instead interviewed clients to discover what emotions they were experiencing and whether they viewed them as ‘good,’ or ‘bad.’  Most viewed the emotions related to caregiving as positive, but especially those caring for someone with dementia viewed them as negative.  No emotions are really ‘good,’ or ‘bad,’ but our perception of them influence how prepared we feel for the experience or how burdened we feel about it.  Professionals can help caregivers embrace their new roles and get the support they need to deal with new, especially unexpected emotions.

AARP & National Alliance for Caregiving did a study in 2015 called, “Caregiving in the US.”
* 40% of respondents felt highly burdened
* 2 in 5 felt their caregiving situation was emotionally stressful
* Respondents in these groups end up repressing their feelings, but they may still feel anxiety, frustration, or guilt.

They may they feel anxiety because:
– They have difficulty watching their loved one decline
– They feel they aren’t doing enough
– They feel they have to be present
– They feel alone
– They feel stress on their marriage & nuclear family

They may feel frustration because of:
– increasing demands on their time
– physical demands of caregiving
– lack of control over their emotions
– self educating and finding resources they need
– lack of support system

They may feel guilt from:
– Wishing they could do more for their loved ones
– losing their patience with their loved ones
– missing time with their own families
– feeling guilty about moving their loved one into a care facility (even thinking about or researching this option)
– complaining about the demands of caregiving

64% of Caregivers caregiving 20hrs/wk, or more, are feeling overwhelmed.

So, not all feel highly burdened or in an emotionally stressful situation, but especially those spending many hours providing care, caring for dementia, and those that had no choice in taking on a caregiving roll will have more emotional stressors.

This chart shows the Health Impacts of Caregiving, specifically the number of respondents who say they have experienced difficult or health related changes since becoming a caregiver.  Note that those who express their emotions or allow for them, somehow, have lower incidences of these health related changes.

Additional research found caregivers repressing their emotions have higher rates of diabetes, high cholesterol, hypertension, COPD, and heart disease.  They are more likely to have a higher behavioral risk factors like, smoking, alcohol use, and in other ways not taking care of their health (failure to take advantage of screening tests, vaccinations, etc.).  To fulfill their caregiving duties, looking after their own health is crucial.

Strategies to Manage Emotions:
* Acknowledge feelings
* Release difficult emotions
* Find solutions
* Engage in enjoyable activities

* Acknowledgement of Emotions Strategies
Caregivers – acknowledge all emotions – both positive and negative, and avoid judging feelings.  They are common and normal.
Professionals – be aware of what caregivers may be feeling, and normalize feelings and provide reassurance their feelings are normal

Some aspects of caregiving you can control, and others you can’t.  You can provide nutritious, appealing meals, but you can’t make somebody eat.  If a caregiver can accept what they can and can’t control, it can relieve that emotional burden.

* Releasing Emotions Techniques
Caregivers – journaling, support group, therapist or friend, exercise/meditation/yoga, prayer.  Once they feel the benefit, they will continue.
Professionals – encourage caregivers to take time to release stress, educate about negative consequences that can come from too much stress, make referrals, listen

* Finding Solutions (Getting help)
Caregivers – siblings, extended family, friends, faith community, professional caregiving support
Professionals – understand caregivers’ feelings/where do they need specific help, notice their readiness to ask for help, coach caregivers around how to ask for help, make referrals to sources of help (Family Caregiver Alliance, lotsahelpinghands, etc.)

* Engage in Enjoyable Activities
Caregivers – list things they enjoy (read, TV, church, exercise, friends), plan mini-breaks and getaways
Professionals – reinforce need to take breaks and recharge, help caregivers understand they are not being selfish, provide ideas for recharging, give positive reinforcement

Reasons why caregivers don’t get help:
Professionals should encourage caregivers to increase the size of their care team.

Professionals get burned out, too, from time-to-time.  Their work is emotionally exhausting, too.  Its called, Compassion Fatigue:
Symptoms:
* bottled up emotions
* isolation from others
* apathy, sad, no longer finds activities enjoyable
* difficulty concentrating
* mentally & physically tired
* preoccupied
* poor self-care (i.e., hygiene, appearance)
* chronic physical ailments (i.e. gastrointestinal problems and recurrent colds)

Overcoming Compassion Fatigue:  [The same advice you give caregivers!!!] * find someone to talk to
* understand the feeling is normal
* spend quiet time alone
* recharge your batteries daily
* identify what’s important to you
* hold one focused, connected & meaningful conversation each day
* start exercising & eating properly
* get enough sleep
* take some time off
* develop interests outside of your work

Resources
* CaregiverStress.com
* Caregiver Action Network: caregiveraction.org
* National Alliance for Caregiving: caregiving.org
* Alzheimer’s Association for Northern California: alz.org/norcal
[Specific to dementia caregivers] * AARP: aarp.org
* American Society on Aging: asaging.org
– 25 Organizations that Take Care of Caregivers
* Compassion Fatigue
– compassionfatigue.org
– aafp.org/fpm/2000/0400/p39.html

Q&A
What about caregivers with no family, but earn too much to get public assistance?
Try the faith community volunteers to give them a short break.  If caring for dementia, try helpforalzheimersfamilies.com.  Try your local Area Agency on Aging, and caregiverstress.com.  Call 211 to connect to your local Area Agency on Aging.

What do you recommend for a daughter caregiver at odds with siblings.  How to bring siblings into the situation?
On caregiverstress.com type. “50 50 rule” in the search box.  There is a brochure and a webinar for Helping Siblings Overcome Family Conflict While Caring for Aging Parents.
Make a list of all caregiving duties and list sibling strengths and physical distance.  Try to make a match between what needs to be done and who can do what from where they are.  A family meeting may help coordinate this or create a calendar of care to rotate coverage.

What about when a caregiver needs help or a break, but continues to refuse?
Take the approach that he/she needs to be in the best shape he/she can be for the person they’re caring for so you don’t end up in the hospital and someone else, entirely has to care for them.  Help them prioritize caregiving tasks or things they aren’t willing to relinquish hands-on help with, so they can see some things they are willing to let someone help with, even if it is just housekeeping, it’s a good place to start.  caregiveraction.org has a lot of tools to get started.

End of life/grief caregiver resources?
Don’t be afraid of hospice.  They are the best at end of life care and have grief resources.
On caregiverstress.com type in, “end of life care” for some articles.  caregiveraction.org also has some end of life resources.

Professionals who are also caregivers and need to take care of themselves?
The “working family caregiver” should talk with your employer to find flexibility in their schedule.  Ask HR.  Some companies have “working family caregiver” programs, EAP program, etc.  Enlist help from those around you – both coworkers and family/friends, perhaps a home care agency so your loved one is not left alone so many hours.
caregiver.com

What about when all responsibility falls on one family member, who becomes resentful because nobody else is helping?
Sometimes other family members don’t know how to help.  Tell them!  Bring a meal every Tuesday, or take Mom to a specific doctor appointment, etc.  Especially men aren’t intuitive about what needs doing.  Have them mow, shovel snow, make home repairs, etc. if you don’t want to have them do hands-on caregiving.