“Coping with Caregiver Role Changes” – Notes from talk

CaregiverTeleconnection is a service offered by WellMed, a charity based in San Antonio.  These are one-hour conference calls on topics of interest to caregivers and family members.  You can find information on these conference calls at caregiverteleconnection.org.  (That website isn’t working for me this morning.)

In mid-May 2017, one of the audio talks featured Evalyn Greb, LCSW, a social worker.  Her topic was coping with caregiver role changes. For long-term caregivers, circumstances will change over time as new symptoms develop for our family members.  Different coping skills are needed as things change.  Ms. Greb distinguishes between positive caregiver coping skills and negative caregiver coping skills.

Positive caregiver coping skills Ms. Greb discusses include:
– Get education about the disease
– Find available support resources
– Join a support group
– Find life for both you and your care recipient throughout the disease process
– Accept yourself as a limited human being
– Know your loved one’s behaviors are not really directed toward you

She also provides six problem-solving techniques for caregivers.

Here’s a link to the 54-minute teleconference:

soundcloud.com/caregiverteleconnection/im-not-the-same-person-anymore-coping-with-caregiver-role-changes-51717

Brain Support Network volunteer Denise Dagan listened to the talk and took some notes.  See below.

Robin

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

Denise’s Notes from

I’m Not The Same Person Anymore: Coping with Caregiver Role Changes
Speaker: Evalyn Greb, LCSW
CaregiverTeleconnection
May 17, 2017

Definition of Coping: a behavior tool used to offset or overcome adversity, disadvantage or disability without correcting the underlying condition.

All living beings use coping skills in daily life.

Not all coping strategies are healthy.

Examples of action-based coping skills:
* Financial difficulty – get a 2nd job
* Safety – alter a dementia person’s environment or take them to daycare for supervision

Examples of emotion-based coping skills:  Reduce stress by addressing the emotions/feelings of caregiving.  There are both positive and negative coping skills.
* Positive – talk with a friend about your feelings
* Negative – pretend you don’t have stress/resentment/angry feelings about caregiving (denying or repressing feelings), alcohol, substance abuse, untreated/denied depression, etc.

The role changes caregivers have to deal with over the course of our care receiver’s disease process are unavoidable.  Support and circumstances change which forces caregivers to adapt.  Your feelings for the one you’re providing care for change over time as they change.  Those feelings can make you question your role in life.  Especially if you’re in the sandwich generation you may wonder if its time to give up working or some things you love in order to meet all the demands on you.

There was some discussion about the real medical tasks caregivers are asked to do, sometimes without proper training, including blood testing, injections, oxygen, wound dressing, medication management, and more.  This is additional stress on a caregiver’s emotions, time, and organizational skills.

Specific coping skills for caregivers experiencing this role change:

– Get education about the disease you’re caring for so you can anticipate what to expect.

– Find available resources to support your care recipient and yourself: physical, medical, social, financial, spiritual, etc.

– Join a support group, attend educational seminars, find life for both you and your care recipient throughout the disease process.

– Accept yourself as a limited human being who cannot be the sole caregiver throughout the life of your family member.

– Know your loved one’s behaviors are not really directed toward you.  They are directed toward the disease.  Often these behaviors are not a choice on their part.  They are part of the disease.

Make a plan for the future, including education about the progression of the disease you are caring for and finding resources to support your care recipient and yourself.  This reduces stress and allows you to plan for eventualities as well as medical emergencies.  Who will care for him/her if you are not available or not well?  Don’t forget to make legal and financial arrangements while your care recipient can participate in decisions about their future care, will & funeral arrangements.  Having legal documents done by the care recipient avoids family disputes.  Get help from Area Agency on Aging social worker or your religious leader in making decisions and being an objective moderator among family members.

Don’t forget to plan for that type of un-anticipate-able emergencies.  How will you transport someone who’s not ambulatory or moves very slowly to a safe place?  Keep car keys away from those with dementia so they don’t follow emergency responders instructions to move cars, follow the police car, etc. when they are incapable of doing such tasks.

Problem Solving Techniques for Caregivers:

1. Name your emotions in very specific words. “I never thought this was in my future.  These are supposed to be my golden years.”  Once voiced, you can think through how you came to this point.  How can you keep your balance and deal with your circumstances?

2. Identify things that might cause the problem and keep you from solving it.  Are you over extended?  What is your care recipient doing?  Compare what you expect of yourself with what you are reasonably able to do.

3. Brainstorm creative ideas and options.  What can you change?  How can you feel joy in caregiving?

4. Weigh the pros and cons of each option.  Change your attitude. Take better care of yourself.  Learn to set limits with yourself and your care receiver.

5. Develop a Plan.  Write it down.  Discuss it.  Rehearse it. Examples:
* I plan to catch myself when negative feelings arise and turn my thoughts toward the positive.
* I plan to take better care of myself.

6. Evaluate your plan.  Is it working?  What modifications would work better?  Examples:
* Is just having a salad daily enough taking care of myself?  Is is time to add some exercise, too?
* Am I catching my negative feelings and finding the positive?  Do I need more help/respite to improve my positive feelings?

Resources to help build your coping strategies:

In your long-term care plan needs to be, “When I need help, where am I going to get it?”

Programs are provided through your local Area Agency on Aging, including support groups, health libraries, home delivered meals and medications, educational information, legal aid for wills and trusts as well as advance care directives.  Find your local AAA at www.eldercare.gov by zip code or call 211.

Disease-specific groups help with information and caregiving tips as well as medical equipment.

Medicare.gov has webpages for caregivers, especially geared toward hospitalization and transfers from home to/from a hospital, rehab center, or care facility.

The United Health Fund, Next Step in Care (www.nextstepincare.org), has done research on family caregiving.  They have the numbers of how many are in this situation and resources for families to cope.

Question and Answer:

Comment:  At the end of the day, don’t think about what you didn’t manage to finish.  Ask yourself, “Did I do the best I could?  Did I take care of myself first?”  Really focus on looking after your own needs first because you can’t take care of anyone else well, if your own needs haven’t been met.  If you are in need of rest, food, medical care, peace of mind, etc. you will be short tempered and/or forgetful, meals are less likely to be planned and nutritious, etc. Put your own needs first, then do your best for your family member.

Highlights from Oprah Interview with BJ Miller, MD, Hospice Expert, on Living

On Oprah Winfrey’s TV channel, she has a show called “SuperSoulSunday.”  Earlier this month, she interviewed BJ Miller, MD, a hospice and palliative care specialist at UCSF.  Dr. Miller shares “his revelations about a subject that is often taboo in our culture — the experience of death.”  You can watch the interview online at:

www.oprah.com/own-super-soul-sunday/BJ-Miller

If you’d like to read more about Dr. Miller, hospice specialist and triple amputee, check out Brain Support Network’s blog post from January 2017:

www.brainsupportnetwork.org/one-mans-quest-to-change-the-way-we-die-new-york-times/

The interview with Dr. Miller is followed by a short film about the late Paul Kalanithi, MD, who wrote the best selling book “When Breath Becomes Air.”

Deb, one of our local support group members, listened to the interview and shared some highlights with us.  Deb’s husband recently passed away with Lewy body dementia.

Robin

—————————

Deb’s Notes from

Guest:  BJ Miller
Season 7 Episode 709
Aired on 05/07/2017
OWN SuperSoulSunday

Here are my notes from a fascinating episode of the OWN (Oprah Winfrey Network) show “Super Soul Sunday.”  Oprah interviewed palliative care and hospice physician, Dr. B.J. Miller.

1. Life is not avoiding suffering, but finding meaning.

2.  Dying people are still living.  There is a continuity of existence such that death is part of living.

3.  Being a human being is hard.  It helps to have something to push against to get us to rise to the challenge.  (Miller suffered an accident as a teenager and is a triple amputee.)

4.  The fact that we all die makes life precious.  We realize that time is short and that delays have consequences.

5.  We should see the silver linings in our lives every day.

6.  In order to die well and be at peace with ourselves and have no regrets, we should live well.  Every day we should do a self-check: 1) Am I doing something I really care about?; 2) Am I doing what I really want to do?; 3) Did I tell my loved ones that I love them?

7.  We all have these negative feelings about death and losing control.  Yet given the choice to live forever, most people would not choose it.  So death is not so negative.  And you can get to the point that you even welcome death.

8.  One of the best things about living is being able to give and receive love.

Letter to newly-diagnosed MSAers in “MSA in South Africa with Sonja”

There was a lady named Sonja with multiple system atrophy in South Africa.  She had a blog aptly called “MSA in South Africa with Sonja.”

Many of her blog posts contain at least one scripture from the Bible. Copied below is her blog post from four years ago, addressed to the “newly diagnosed.”

The other blog posts with the label “My MSA Story (from 1st Symptoms to Diagnosis)” are all worth reading.  They are beautifully-written.

According to the home page, Sonja died in March 2017.

Robin

—————————–

msainsouthafricawithsonja.blogspot.co.za/2013/08/dear-newly-diagnosed-patient.html?m=1

Tuesday, August 6, 2013
DEAR NEWLY DIAGNOSED PATIENT
MSA in South Africa with Sonja

Although it is now almost 3 years since I’ve been diagnosed (6 Sept 2010), memories of that traumatic time flood back easily to make me relive that devastating period in my life.  Not only the patients, but also their families and friends are hit hard when receiving a diagnosis of an incurable, terminal disease.

Like many of you, the day I was diagnosed was the first time we had ever heard of this disease called Multiple System Atrophy (MSA). Back at home we looked it up on Google. I glanced only very briefly at the symptoms listed, and quickly closed the lap top. That was too much information too soon. Some people can take the whole bitter pill in one go, but I was far from ready to face all those symptoms.

My mind was racing with thoughts and questions: Will we be able to cope with this? How fast will all of this happen? Why did this happen to me? Did I do anything wrong? What do I do now? Where do we start? The only prayer I could manage was the desperate cry; “Oh God, please help me!”

The neurologist said we would need all the help we could possibly get and referred us to a psychologist.  Faced with the diagnosis of a dread disease that would require drastic changes in our lifestyle, we went through many emotions and all the different stages of grief.  This can, and did put strain on relationship. My husband’s patience was tested to its limits during my ‘angry stage’ and he often had to bear brunt of my frustrations.  He’s still here supporting me.  Bless him!

My emotions roller coasted from sadness, extreme guilt, and fear and uncertainty of what the future held.   Grief is a natural response to loss, and I was going to have to face many losses in the future.

On the psychologist recommendation I started writing down my feelings and experiences.  With my friend Karin’s help and encouragement I started my first blog post in my mother tongue Afrikaans, ‘Sonja se Griffels’, wondering whoever would want to read my first humble posts.  Writing however did help me to see my problems in perspective.

By the time of the final diagnosis I was fortunately past the first stage of denial.  This however didn’t mean that everybody in my life was past denial.  Some took longer to get past denial and others never did.  They were consequently unable to deal with me and the disease and were left behind.  Perhaps facing my physical frailty reminded them too much that, in the blink on an eye, it could happen to them.

At first I isolated myself from other patients, fearing that those in a more advanced stage would only depress me further.  Grieving has no time limit, it’s a very personal experience, and there is no ‘right’ way to do it.  It took me the best part of the first year to digest the diagnosis, the changes taking place in my body, and what I would have to face in the future.  This is an ongoing process as the disease progresses.

Before all this happened, I was fit and healthy.  When the first symptoms presented, I tried to fight it by becoming fitter and living healthier.  I bought organic foods from farmer’s markets, distilled our water, and juiced vegetables and fruits.  I still believe in, and reap the benefits of a healthy lifestyle, but going to extremes didn’t stop the disease from progressing.  I therefore concluded that life is best lived balanced.

Many well meaning friends have over the years suggested many therapies and ‘cures’.  If I had to try them all out, we’d be bankrupt.  I have come up with the following question for such suggestions; has the product/therapy been subjected to double blind clinical tests specifically for MSA?  I have yet to receive a positive answer.  There are currently dedicated researchers trying to solve the mysteries of MSA, but this is a process that takes time.  You’ll have to decide if there is anything out there that seems worthwhile to try.

I found the love and support of my family and friends, and avoiding stress as far as possible, to be the best medicines.  The support of my kind, and always available neurologist, who regularly attends conventions on movement diseases, has gone a long way in keeping me satisfied that I’m receiving the best care currently available.

Sometime before the diagnosis the doctor prescribed an anti-depressant, which I still take.  Some may not agree with this – I however don’t believe in unnecessary suffering.  I also found humour and laughter helpful the ward off the blues.

Attitude can make a huge difference in how we cope with difficult situations.  I have adopted Viktor Frankl’s philosophy from his book, ‘Man’s search for Meaning’, as my own;

“Everything can be taken from a man but one thing: the last of human freedoms – to choose one’s attitude in any given set of circumstances, to choose one’s own way.”

This is my life and I had a choice how I could respond to this.  I have an incurable disease and it will only get worse, but I wasn’t going to spend to rest of my life being miserable as well.  I had plenty of people to love and to live for, and I am blessed with their love in return.

It took me the best part of the first year before I tentatively started reaching out to others with the disease.  My first step was to register on ‘Patients like Me’, where I searched for others who were more or less at the same stage as me.  I found plenty in a far worse state than me.  Their plight triggered deep feelings of compassion, and I stopped feeling sorry for my self.

Concerned, I wondered how I could help them. When I first heard projects to create awareness for MSA, I was ready and eager to put my name and face to this disease and join these campaigns.  With plenty of help from my supporting friend Karin, we organised our first local awareness event.  This added new purpose to my life.

I have since been privileged to make contact and get to know many patients and/or their families from all over the world, as well as a few locally.  From them I have not only learned a lot about the disease, but also how to cope with it.  We support each other, and they have enriched my life. Now I can not imagine my life without my compassionate MSA buddies.

Being a fiercely independent person before, accepting the help from others was very difficult initially.  I have since learnt the valuable lesson that in accepting help you give a gift to the giver.  Don’t underestimate the value this can add to the lives of others, and the new depth in friendships/relationships this can lead to.  In turn, reaching out to fellow patients in their darkest hours has added value to my life.

Living with an incurable disease has caused my life to take on a new intensity.  I love more deeply, have more compassion, value friendships deeply, laugh more joyously, take more joy in music, and appreciate the beauty of nature more.  I live in the moment, savouring every beautiful moment.  The awareness that my earthy life, like all life, is finite has made it more precious.

One can never be fully prepared for the expected diminished capacities, but I hope my mental  and spiritual preparation will soften the impact.  Concentrating on what I have left has made what I have lost easier to endure.  I now see my physical body as only a part of the real me.  This allows me to look at the disease objectively, to accept it, but not succumb to it.  Coming to acceptance is an ongoing journey, a destination to aspire to.  I now often experience the inner peace that comes with acceptance.  At times I cry a little, but it is no longer tears of desperation for I am not without hope.

Dear fellow patient, you are at a cross road in your life now. Your journey will not be the same as mine.  It will be unique to you and how you respond to this extreme challenge.  The road ahead will be rough.  Open your heart to see the beautiful flowers along this road.  They will be there.

Blessings for your journey,
Sonja

Psalm 10:17 – You, Lord, hear the desire of the afflicted; you encourage them, and you listen to their cry

Lifting Techniques for Home Caregivers

Unfortunately we have lots of caregivers in our local support group who have shoulder and back injuries due to lifting or moving their loved ones. Quite a few caregivers have required surgery for these injuries.

This webpage on lifting techniques for home caregivers is from the American Academy of Orthopaedic Surgeons (AAOS). The webpage reviews how to help someone sit up in bed, stand up, and sit down. A few useful photos are shared. Here’s a link:

orthoinfo.aaos.org/topic.cfm?topic=A00096

Lifting Techniques for Home Caregivers
American Academy of Orthopaedic Surgeons
Last reviewed: December 2016

“Do as I say, not as I did” in building your care team

I recently became acquainted with Kate Burke of Montrose, CO. She had been caring for her husband with Lewy Body Dementia on a 24×7 basis for quite a few years. Her website, Caregiver’s Journey (caregiver-journey.com), offers some good advice for all caregivers as do her two books. Thus far, her books have not been LBD-focused.

Her website says: “[Like] so many of her fellow Caregivers, Kate ignored her own warnings and fell victim to Caregiver Burnout. Both she and her husband wound up in the hospital.” “Under extreme duress,” Kate made the heart-wrenching decision to place her husband in a nursing home.

“Do as I say, not as I did,” Kate advises, but then, many of us might still follow the same path that she did, waiting almost too long to accept that their own care must come first if they are to care for someone else. “That’s why we need a Care Team, why it’s so important,” she asserts. “Your team, and everyone on it offer support and (hopefully) help you avoid a Caregiver Crisis that could take you down!”

More recently she placed her husband on hospice, which she describes as “another difficult decision” but with a positive side — more one-on-one help. (He died in April 2017 at a hospice facility.)

“Your Care Team is fluid, constantly changing to fit specific needs. Caregiving is hard, but it has its rewards, too. Having a Care Team is one of them.”

In April 2017, she published a book titled “The Caregivers Journey, Building Your Care Team.” Her website discusses the book series and a few aspects of her journey.

Here’s a link to an article written by Kate for her local newspaper on the topic of “Building Your Care Team.” The article is posted to her website, caregiver-journey.com.

caregiver-journey.com/kathryn-burke-articles/building-care-team/

Building Your Care Team
Montrose Daily Press
By Kathryn R. Burke
March 19, 2017

“Caregiver stress: Tips for taking care of yourself” (Mayo Clinic)

Recently I stumbled across this article from March 2015 on the Mayo Clinic website that notes that caregiving is rewarding but stressful. The article recommends several strategies for coping with this kind of stress including: accept help; focus on what you are able to provide; set realistic goals; get connected; join a support group; seek social support; set personal health goals; and see your doctor.

Here’s a link to the full article:

www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/caregiver-stress/art-20044784?pg=1

Caregiver stress: Tips for taking care of yourself
Caring for a loved one strains even the most resilient people. If you’re a caregiver, take steps to preserve your own health and well-being.
By Mayo Clinic Staff
March 7, 2015

“3 Kinds of Grief Nobody Talks About” (by Ken Doka, PhD)

In April 2016, Ken Doka, PhD (drkendoka.com) published a book called “Grief Is a Journey.”  In this excerpt in O, Oprah’s magazine, he describes the three kinds of grief nobody talks about — the loss of a person we once knew, the loss of a person we haven’t yet lost, and the loss of the person we used to be.  Here’s a link to the excerpt:

www.oprah.com/inspiration/The-Kinds-of-Grief-Nobody-Talks-About

3 Kinds of Grief Nobody Talks About
The author of “Grief Is a Journey” explains how some of our most cutting losses can go unrecognized by friends and family—and even ourselves.
By Kenneth J. Doka, PhD
Oprah.com
April 15, 2016

Actress Dina Merrill had Lewy body dementia

Actress Dina Merrill died recently.  She was a guest on many TV shows, including “Bonanza,” “Mission: Impossible” and “Murder, She Wrote.”  Her son reported that she had Lewy body dementia.  The New York Times obituary says nothing about her LBD journey.

Here’s a link to the obituary:

www.nytimes.com/2017/05/22/movies/dina-merrill-dead-actress-and-heiress.html

Robin

Who converts from Pure Autonomic Failure to PD, DLB, and MSA?

There’s been quite a bit published this year about those with “Pure Autonomic Failure” converting to Parkinson’s Disease (PD), Dementia with Lewy Bodies (DLB), or Multiple System Atrophy (MSA).  (All three disorders are alpha-synucleinopathies.)

PAF is a disorder of the autonomic system.  The autonomic system controls things that the body generally handles automatically such as blood pressure, heart rate, eye blink, body temperature, sweating, digestion, etc.

This article, published in February 2017, is authored by the Autonomic Disorders Consortium, a group made up of the key autonomic specialists in the US.

In this study of 74 subjects at five US medical centers (NYU, Vanderbilt, Mayo Rochester, NIH, and Harvard), about one-third (34%) developed DLB (n=13), PD (n=6), or MSA (n=6) over four years. Overall, 14% of people converted from PAF to one of the three alpha-synculein disorders each year.  Many of those who converted had REM sleep behavior disorder (RBD).

Other symptoms were associated with who got MSA, DLB, or PD:

* “Patients who phenoconverted to multiple system atrophy had younger age at onset of autonomic failure, severe bladder/bowel dysfunction, preserved olfaction, and a cardiac chronotropic response upon tilt > 10 beats per minute.”  The “younger age” was early 50s.  On average, those in the PAF group who converted to MSA had PAF symptoms for fewer than five years.

* “Those who phenoconverted to Parkinson disease or dementia with Lewy bodies had decreased olfaction, a lesser chronotropic response to tilt, and a longer duration of illness.”  “Longer duration of illness” refers to the fact that, on average, those in the PAF group who converted to PD or DLB had PAF symptoms for nearly ten years.

And:  “The small group of patients retaining the pure autonomic failure phenotype had very low plasma norepinephrine levels, slow resting heart rate, no REM sleep behavior disorder, and preserved smell.”

Here’s a link to the full article (available at no charge online):

www.ncbi.nlm.nih.gov/pmc/articles/PMC5323269/

The abstract is copied below.

Robin

———————————————–

Annals of Neurology. 2017 Feb;81(2):287-297.

Natural history of pure autonomic failure: A United States prospective cohort.

Kaufmann H, Norcliffe-Kaufmann L, Palma JA, Biaggioni I, Low PA, Singer W, Goldstein DS, Peltier AC, Shibao CA, Gibbons CH, Freeman R, Robertson D; Autonomic Disorders Consortium.

Abstract
OBJECTIVE:
To define the clinical features and biomarkers that predict which patients with pure autonomic failure will develop Parkinson disease, dementia with Lewy bodies, or multiple system atrophy.

METHODS:
One hundred patients who presented with pure autonomic failure were recruited at 5 medical centers in the United States. Seventy-four patients agreed to be followed prospectively. Patients underwent clinical evaluations including neurological rating scales, sleep questionnaires, smell test, and sympathetic and parasympathetic cardiovascular autonomic function tests.

RESULTS:
At enrollment, patients were 68 ± 12 years old (median ± interquartile range) and had had autonomic failure for 5 ± 7 years. Within 4 years of follow-up, 25 of 74 subjects (34%) developed dementia with Lewy bodies (n = 13), Parkinson disease (n = 6), or multiple system atrophy (n = 6). The presence of probable rapid eye movement (REM) sleep behavior disorder was strongly associated with the development of a manifest central nervous system (CNS) synucleinopathy (odds ratio = 7.1). Patients who phenoconverted to multiple system atrophy had younger age at onset of autonomic failure, severe bladder/bowel dysfunction, preserved olfaction, and a cardiac chronotropic response upon tilt > 10 beats per minute. Those who phenoconverted to Parkinson disease or dementia with Lewy bodies had decreased olfaction, a lesser chronotropic response to tilt, and a longer duration of illness. The small group of patients retaining the pure autonomic failure phenotype had very low plasma norepinephrine levels, slow resting heart rate, no REM sleep behavior disorder, and preserved smell.

INTERPRETATION:
Patients presenting with pure autonomic failure are at high risk of phenoconverting to a manifest CNS synucleinopathy. Specific clinical features predict future diagnosis.

© 2017 American Neurological Association.

PMID: 28093795
www.ncbi.nlm.nih.gov/pubmed/28093795

Santa Clara County & San Mateo County Families in Need — Respite Funds Before 6-30-17

This email is ONLY for families who meet this criteria:
* live in Santa Clara County or San Mateo County
* have a loved one with dementia (LBD, PSP, CBD, etc)
* have a financial need  (On a temporary basis, this is somewhat flexibly defined.)
* have a way to spend caregiver respite funds before June 30th

Caregiver respite funds can be spent on in-home care, adult day care, or temporary facility care.

These funds must be spent by June 30th!

Generally the caregiver respite grants cap out at $1K but I think there’s even some flexibility with that.  The funds must be paid directly to the care provider, not the family.

Even if you might have unpaid in-home care bills (or adult day care bills) dating back to July 1, 2016, these are eligible for the respite grant.

The Alzheimer’s Association is distributing the funds.  Please contact our friend Alex Morris at 408-372-9940, [email protected].  She would be happy to hear from you to know that these funds can be used before they vanish.

Please let me know if you were able to take advantage of this!

Robin