“Are you a healthy caregiver” – 10 question test

Here’s a 10-question test for caregivers to determine if they are
injuring their own health.

The authors say: “On average, it takes family caregivers four years
to reach out and ask for help. Don’t be part of those statistics. Ask
for the help you want and need. You will be a healthier caregiver and
the person receiving care will be better cared for.”

Robin

—————————————————————

www.familycaregiversbc.ca/caregiving-parents/are-you-a-healthy-caregiver/

Are you a healthy caregiver?
July 19, 2018
Family Caregivers of British Columbia

Many caregivers understand the importance of caring for themselves
and, yet, in another breath, say things like, “I feel overwhelmed,”
“I’m stressed out,” “I’m too busy to eat, let alone find time to stay
healthy,” and “There are so many things to do, how do I make time for
myself?”

Start by checking in with yourself. Respond to the statements below to
recognize the positive steps you are already taking to ensure you stay
healthy, and to identify areas where you might consider action to help
keep you resilient.

1. I am satisfied with my overall personal health.

Yes No

2. I have the skills and information I need to give the required care.

Yes No

3. I maintain regular contact with family and friends and make time
to spend with them.

Yes No

4. I can ask for help and accept help when it is offered. I know I
don’t have to, and can’t, do this alone.

Yes No

5. I can communicate effectively with the person I am caring for, as
well as with others involved in their care.

Yes No

6. I am aware of community resources available to help support me in
my caregiver role.

Yes No

7. I am aware of caregiver support groups (locally or online) and/or
have a supportive network where I can share my challenges and
successes.

Yes No

8. I make use of respite options available and take breaks away from
my caregiving responsibilities.

Yes No

9. I have gathered information about the progression of my care
recipient’s disease, so I know what to expect and can prepare in
advance as best I can.

Yes No

10. I know how to navigate the healthcare system and who to ask if,
and when, I need help.

Yes No

****************

Give yourself one point for every “Yes” answer.

8-10 Points
You are already taking several important actions to take care of
yourself and make sure caregiving is sustainable for you. Look closely
at any statements where you answered “No,” and consider whether
accessing more resources would be helpful for you.

5-7 Points
You understand the importance of self-care, but you’re not always able
to take action to support yourself. Consider any barriers you have to
self-care and ask yourself whether these are external (you don’t know
about the resources that exist to help you) or internal (you have
trouble asking for and receiving support). Sharing the care is
essential to finding enough time and energy for yourself. Choose one
statement where you responded “No” to work on this week.

Fewer than 5 Points
Without contributing to your own well-being, caregiving quickly
becomes overwhelming and unsustainable. Use this list of 10 statements
as a guide to creating a self-care plan; start with learning more
about the caregiver support resources available to guide you. It will
be important for you to identify resources you’re not currently using
in your social circle, such as family, friends, acquaintances and
neighbours, to share the care and create some much-needed space for
addressing your own well-being.

On average, it takes family caregivers four years to reach out and ask
for help. Don’t be part of those statistics. Ask for the help you want
and need. You will be a healthier caregiver and the person receiving
care will be better cared for.

 

“Aikido communication – Align, agree, redirect, and resolve” – notes

Caregiver Teleconnection, a service of WellMed Charitable Foundation,
hosts periodic conference calls on caregiving topics.  Last week, the
topic was “Aikido communication – Align, agree, redirect, and
resolve.”  The speaker was a gerontologist with the Texas Extension
Service, Andy Crocker.

With Aikido, one listens for areas of agreement or common ground and
uses “I” messages, which are particularly effective when emotions run
high.  With “I” messages, rather than “You” messages, caregivers can
de-escalate potentially confrontational situations between themselves
and family members or healthcare providers.  This approach is also
useful in de-escalating situations between caregivers and care
recipients, even if the care recipient has cognitive impairment.

The conference recording (audio only) is available here:

https://soundcloud.com/caregiverteleconnection/finding-common-ground-aikido-communication-with-andy-crocker-91018

Brain Support Network uber-volunteer Denise Dagan listened to the
conference call and shared her notes below.

To sign up for email announcements about these conference calls, check out:

http://caregiversos.org/caregiver-teleconnection/

Check out the many examples.  This approach is definitely worth trying.

Robin

————————————————————

Notes by Denise Dagan, Brain Support Network volunteer

Finding Common Ground: Aikido Communication
Speaker:  Andy Crocker, Gerontologist, University of Texas Extension Service

Caregiver Teleconnection
September 10, 2018

Communication is a process or cycle.  When I speak, you respond based
on your individual interpretation of what I said (based on your
experience).  Your sensory perception, health, patience, etc. impacts
your response to my comment(s).

The process begins with how I choose to phrase what I say.  “I”
messages increase the chances of being heard with a positive tone.
“You” messages are confrontational and may result in conflict.

Example:  Conversation between siblings (Andy and Katie) caring for their Mom.

Andy: “You need to help around the house.”  The tone is accusing Katie
of not doing enough around the house and may result in conflict.

Andy: “I need help around the house.”  The tone is stating his need
for help around the house and is not accusing or blaming.

Another example:

Andy: “You made me so angry!”  Blaming Katie for Andy’s anger.

Andy: “I feel angry that you…”  Blaming Betsy’s action for Andy’s
anger.  One level removed is less confrontational.

Sometimes, it is best to make an appointment to speak about something
and actually plan what you will say to get your message across with a
level head.
* Take out “You” messages in the plan for how to communicate your
message or your ask.
* Keep out irrelevant factors from your history together from the discussion.
* Never say, “You always…,” or “You never.…”
* Be sure to express your appreciation for assistance others provide
in your caregiving so they feel appreciated.

Aikido Communication

Tenets / 4 Steps:

Align – find the other person’s perspective.  See the situation from
in the other person’s shoes.
* How would I feel if I were in their shoes
* What does this person need form me?  Praise, appreciation, control?
– Ask: Give me an example of something I can do?  If I could do one
thing to help you, what would that be?
– Rather than saying, “What do you want from me?!” or “What am I
supposed to be doing?!”

Agree – identify issue and concerns with common ground (goals, needs,
feelings) to get on the same page
* I share your concern about…,  I agree we need to do something about…,

Redirect – move to productivity
We both want to do what’s best for…

Resolve –
I think we should explore…,  I think…would be helpful for…

Sometimes, you have to agree that there is no resolution or solution
to the problem at hand.  That, in itself, is progress.

Aikido can be used in communicating with a person who has cognitive
impairment or dementia, where higher order functioning is not present.

Example: Grandson caring for grandfather with dementia who was a
Marine Colonel.  Every morning he rises at 4am and get the day
started.  You can’t tell him he’s no longer a Marine and has no place
to go because being a Marine is his experience of the world.  You must
align, agree, redirect and resolve to understand his motivation for
what he’s doing.  To help him maintain his dignity, activity,
independence as much as possible without adding fuel to verbal or
physical conflict.

* Align – he believes he is a Marine so you must cooperate with what
you can do at home within his ‘world’.  You cannot keep him in bed
longer.

* Agree – you know he always started with shaving, dressing,
breakfast, exercise – all things you can assist him with that align
with his belief that he is a Marine and are things he can do
productively at home.

* Redirect – ask for his help around the house today and direct his
attention to KP duty / cleaning up breakfast. You know he always
shaved twice daily, so be sure to include that activity to the daily
schedule.

* Resolve – In dealing with someone who has dementia, resolution is
that grandpa sleeps through the night and accepting that he rises as
4am, obtaining grandpa’s cooperation, calm demeanor, emotional calm
throughout the day.  Recognizing that what works one day may not work
the next day – just give your initial inclination / plan a try and see
how effective it is.

Aikido Communication is one more tool in your toolbox to help get
through your day, along with:
* Mindfulness & relaxation techniques
* Respite resources
* Caregiving or Home maintenance assistance (volunteer friends/family
or hired help)

Question and Answer

Q. Aikido is like Naomi Feil Validation.

A. Both her method and Aikido have the same understanding of how to
understand and manage someone with dementia, but Validation is less
useful for direct communication.  We can be assertive without being
aggressive or confrontational.  Using the “I” messages to identify how
you feel and what you need and suggest what needs to be done without
the conversation devolving.  It is not easy because it does not come
naturally to us, but it is effective.

Q. I found I always did what my father told me, but now that he has
dementia I find I am the one who needs to tell him what to do and how
to do it to keep him healthy and safe.  There is a big disconnect when
your eyes see your father, but your mind tells you he is not the same
man he was.  The disconnect is painful and challenging.

A. Good future topics are role loss or role change.  There is a good
amount of loss and grief when the person you used to look to for
direction and advice is no longer available to you because of their
cognitive changes.  At the same time, you need to take charge and do
what’s necessary to look after him.

A. There are family members surrounding the primary caregiver and care
recipient who are all struggling with grief before the care
recipient’s death (anticipatory grief).  There is grief with the loss
of each of the care recipient’s abilities.  Often there is a family
member who doesn’t want to help or visit because they don’t want to
see the care recipient in ’that’ state.  That’s anticipatory grief.
Sometimes, it is helpful to identify it as grief in a conversation
with them to try to help them work through their grief and garner
their help in caring until the person actually does pass away.  They
may be adamant that they don’t want to see their family member in
’that’ state.  It is sad but you must respect that avoidance is their
way of dealing with their grief.

“3 Legal Documents Caregivers Need to Manage a Senior’s Healthcare”

This short article is about the three documents — HIPAA authorization, medical power-of-attorney, and advance health care directive — caregivers should make sure they have if they are managing the care of a senior.  Although this article is directly to adult children caregivers, this advice applies to all caregivers, even spouse caregivers.  We have met many spouse caregivers over the years who do not have these documents either.

See AgingCare for the article:

www.agingcare.com/Articles/legal-documents-to-make-healthcare-decisions-for-your-parent-146623.htm

3 Legal Documents Caregivers Need to Manage a Senior’s Healthcare
Marlo Sollitto
Updated May 3, 2018
AgingCare

 

 

‘It can be isolating’: How caregivers handle the stress and find support

This short article from the Chicago Tribune is about how isolating and
stressful caregiving is.

Some people may recognize the name Denise Brown, who lives in the
Chicago area. She started the website caregiving.com as a result of
her experience caring for her elderly parents.

Denise Brown offers five suggestions for caregivers in the article:

* “If you are struggling, it’s not because you are failing. It’s
because what you’re doing is really hard.”

* If you need help and aren’t sure where to start, reach out to your
doctor, local area agency on aging, a disease-specific
organization…, a social service agency like United Way, or your
employer’s Employee Assistance Program.

* If the doctor you contact can’t offer suggestions, nudge him or her
to create a list of resources.

* Find ways to relax.

* Make self-care a priority. “We have a tendency to think that we’re
not doing enough,” she said. “I think it’s important for us to sit
still for a few minutes every day and know that we are doing enough —
that our work and our caring and our love is enough.”

Here’s a link to the article:

www.chicagotribune.com/lifestyles/sc-fam-caregiving-support-0911-story.html

Definitely worth reading….

Robin

 

“Dementia Spouse Caregivers’ Relationship Closeness” – Dissertation Excerpts

This is a doctoral dissertation from 2017 on the impact of the
relationship for a spouse caring for a husband or wife with dementia.
Though dementia caregiving is the focus of this dissertation, I think
the document applies to caregiver spouses where the care-recipient
does NOT have dementia.

The document is 280 pages so I didn’t read it all but skipped around.
Despite the fact that the language is scholarly, many of the pages are
worth reading.

I’ve provided two long excerpts below. The second excerpt includes
this sentence: “It is also known that a spouse’s vows, vigilance,
worry and tireless caregiving result in incredible morbidity.” I
think this refers to the caregiver’s morbidity. The dissertation’s
author indicates that “caregivers would be in better states of health
and wellness if clinicians were aware of the [couple’s] ability to
communicate…”

Here are the two excerpts I found the most interesting:

(From page 55 and 56, using the page numbers of the dissertation)

Couplehood. Lobo Prabhu et al. (2005) skillfully depicted the
relationship of husbands and wives… When dementia was introduced,
the fragile balance was thrown into chaos. The authors constructed a
framework to explain why couples stayed together and offered practice
implications to enable spouses to continue caregiving with sound
support. They reported that couples retained togetherness, despite
dementia, when the basis of stable marriage included concepts of:
1. quid pro quo (an equal exchange or substitution),
2. values of commitment (respect, pride, and accomplishment despite sacrifice),
3. holding on to the familiar (vs. letting go and abandonment),
4. rupture vs. repair of marital bond (what is the minimal
gratification the caregiver requires to sustain the relationship? will
a smile or eye recognition suffice?),
5. mastery of separation (decisional capacity and choice migrates from
care-recipient to caregiver),
6. spirituality (altruism and prayer),
7. changes in sexuality (loss of shared togetherness) and
8. emotional support (social connections, family support, and kin-care).

(From page 80 of the dissertation)

Regrettably, the couple’s “together life biography” and pre-dementia
relationship closeness are greatly underestimated in clinical practice
(Davies & Gregory, 2007). Pre-dementia relationship closeness and
current relationship closeness colors the way a spouse caregiver makes
decisions and renders effective and nurturing care, or not. It
triggers advocacy or ambivalence. It is also known that a spouse’s
vows, vigilance, worry and tireless caregiving result in incredible
morbidity. Moreover, empiric literature has shown relationships
characterized by kindness, respect, and warmth, or less criticism,
conflict, and family dysfunction are associated with better caregiver
and care-recipient morbidity and caregiving outcomes. Additionally,
the care-recipient behavior is a significant controlling factor for
the caregiver’s reciprocal emotions, relationship, burden, and
depression. Therefore, caregivers would be in better states of health
and wellness if clinicians were aware of the dyad’s ability to
communicate, the efficacy of their interactions, the strengths, and
weaknesses activated by dementia disease and the vulnerabilities now
present in the dementia dyad’s life together experience.

Here’s a link to the full document, in case you’d like to check out
more of the dissertation:

https://opencommons.uconn.edu/cgi/viewcontent.cgi?referer=&httpsredir=1&article=7648&context=dissertations

Heart and Soul: A Phenomenology of Dementia Spouse Caregivers’
Relationship Closeness
by Elena Schjavland, PhD
University of Connecticut, 2017

Thanks to an online friend who is an FTD caregiver for sharing this
dissertation with me.

Let me know if you find other parts that resonate with you,
Robin

Sept 2018, Speakers at Parkinson’s Support Group Meetings, Northern CA

In September 2018, some Parkinson’s support group meetings in Northern and Central California have guest speakers that may be of interest to those in the Brain Support Network community:


Lodi

Tuesday, 9/4, 10am-noon  (meeting on 1st Tuesday in Sept)
Guest Speaker:  Shelly Azevedo, myofunctional specialist
Topics:  Facial, speech, and swallowing issues in PD
RSVP?:  No.


San Andreas (Calaveras County)
Tuesday, 9/4, 10am-noon (speaker usually begins at 10:30am)
Guest Speaker:  Kenneth Renwick, MD
Topic:  Medical marijuana for those with PD
RSVP?:  No.


Roseville
Tuesday, 9/4, 1:30-3pm
Guest Speaker:  Ability Tools representative
Topics:  Selecting the right scooter and other services regarding
assistive technology, mobility, and medical equipment
RSVP?:  No.


Soquel (Santa Cruz County)
Wednesday, 9/5, 2-3:30pm
Guest Speakers:  Miriam Tutman and Holly Blue Hawkins
Topics:  Tricks and tips of healthcare and setting up affordable
care at home
RSVP?:  No.


San Jose/Willow Glen
Friday, 9/7, 10am-noon  (speaker begins about 10:15am)
Guest Speaker:  Kathleen Poston, MD, movement disorder specialist,
Stanford University
Topic:  Fatigue, drowsiness, and depression in PD
RSVP?:  No.


Auburn
Tuesday, 9/11, 11:30am (lunch meeting)
Guest Speaker:  Stephanie Watson, Sierra Senior Placement
Services
Topic:  Types of assistance, places, and cost
RSVP?:  No.


Palo Alto YOPD (Young Onset PD)/Stanford
Tuesday, 9/11, 6:30-8pm
Guest Speaker:  Robert Magbanua, Mark Green Sports Center,
Union City
Topic:  Rock Steady Boxing
RSVP?:  Yes, if this is your first time attending.  Please email group
leader John Mamin, [email protected]


Menlo Park/Little House
Wednesday, 9/12, 2-3:30pm
Guest Speaker:  Carrolee Barlow, MD, CEO, The Parkinson’s
Institute, Sunnyvale
Topic:  Causes, treatment, and latest research in treating PD
RSVP?:  No.


Stockton
Thursday, 9/13, 1:30-3pm
Guest Speaker #1:  Karen Fabreo-Hittle, PT, physical therapist,
O’Connor Woods, Stockton
Topic #1:  Successful transferring
Guest Speaker #2:  Anna Lissa Garcia, OT, occupational
therapist, O’Connor Woods, Stockton
Topic #2:  How speech therapy can help with swallowing, speech
volume, and articulation
RSVP?:  No.


Walnut Creek (Mt. Diablo)
Saturday, 9/15, 10am-noon  (speakers begin at 10:45am)
Guest Speaker #1:  Carol Fisher, RYT, yoga therapist
Topic #1:  Meditation and yoga
Guest Speaker #2:  Elaine Welch, CEO, Mobility Matters
Topic #2:  Transportation issues for seniors and disabled
RSVP?:  No.


Lincoln
Tuesday, 9/18, 10-11am
Guest Speaker:  Cate McGregor, nurse educator, Coalition for
Compassionate Care of California
Topic:  Importance of POLST
RSVP?:  No.



Merced
Thursday, 9/20, 10am-noon
Guest Speakers:  Claire Osborne, OT, occupational therapist,
and Judy Chi, PT, physical therapist
Topic:  LSVT BIG and LOUD programs
RSVP?:  Yes, preferred.  Contact Elina Lopez, Amie’s Senior Care,
[email protected], 209-384-3300.

 

For meeting location and other details, see the Stanford Parkinson’s Outreach website.

 

“Guardianship 101” – Webinar Notes

On August 9th, the Alzheimer’s Foundation of America (alzfdn.org) hosted a webinar on guardianship by Britt Burner, Esq., who specializes in wills, trusts and estates in New York state.

For adults who have been injured in an accident, suffer from an incapacitating physical illness or psychological disorder, or have some other condition that prevents them from caring for themselves, a legal arrangement called guardianship, or conservatorship, places the individual under the supervision of a guardian, or custodian, for their protection and care.

There are two main types of guardianship: guardianship of the person and guardianship of the estate or property. This webinar focused on situations in which a guardianship may be necessary, how to avoid a guardianship proceeding, and the impact that moving between states can have on an individual that has been subject to a guardianship proceeding.

You can find the webinar recording here:

alzfdn.org/webinar-archives/

Brain Support Network volunteer Denise Dagan listened to the webinar and shared her notes.

Robin

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

Notes by Denise Dagan, Brain Support Network Volunteer

Guardianship 101
Speaker: Britt Burner, Esq.

Alzheimer’s Foundation of America
August 10, 2018

What is guardianship or a conservatorship?

  • Based on local state law
  • Incapacity vs diminished capacity
  • Unable to make decisions for self and unable to understand the consequences of this inability in
    — Personal needs (health)
    — Property management
  • In NY, not a medical standard; factual determination
    — Medical records are not usually admissible (everyone still has HIPPA rights, so you may not have medical records)
    — Demonstration of determination is usually
  • Least restrictive alternative (person under guardianship is allowed to make decision which they are capable of, like last will & testamate, but not checkbook)

Roles:

  • Petitioner – person asking for guardianship on behalf of another
  • Cross-petitioner – another person who wants to be guardian when the petitioner ask guardianship be granted
  • AIP – alleged incapacitated person
  • Court evaluator – ‘the eyes and ears of the court,’ appointed by the court who does an investigation of the circumstances being claimed by the petitioner. May be a lawyer, but not always. Testifies to the court (in NY w/in28 days).
  • Counsel to AIP – hired by the court to represent the AIP. When guardianship is suspected to be needed, the Counsel to AIP is responsible for speaking the AIP’s wishes to the court, even if they don’t make any sense.
  • Other interested parties
  • Guardian of the person and guardian of the property (can both be appointed)

Who can commence a guardianship action?

  • Family member
  • Medical institution
  • Local municipality
  • APS investigations (Adult Protective Services)
  • An individual can request guardianship for themselves

Why does someone commence a guardianship action?

  • cognitive impairment
  • inability to balance a checkbook or make other financial decisions
  • check the mail/pay bills
  • coordinate care
  • vulnerability
    — Senior scams
    — Family member abuse
  • improper actions by appointed agents (inappropriate or untrustworthy people appointed power-of-attorney)
  • invalid documents (insufficient or incomplete powers-of-attorney in your advance directive)

Pros:

  • court oversight (to ensure those w/POA act in your own best interest)
  • orders from court on big decisions, i.e. sale of property, etc. (title company may question a POA’s actions, but not a court order)
  • third party institution recognition of authority (some banks don’t accept POA but not court orders)

Cons:

  • court oversight (can be a hindrance & delay when all parties are in agreement; annual accounting to the court can be costly & a hassle, especially when everyone is being honest)
    — reporting requirements
  • costs (court evaluator, accountants, bond – insurance on the estate, commissions to the guardian – not mandatory, lawyer’s fees, etc.) In NY the court decides on how much fees will be and who will pay them, usually the estate in question but sometimes the petitioner (especially if petition is unwarranted).
  • time
  • family disagreements
  • embarrassment

Examples of Powers: Guardian of Person

  • arranges medical care (usually specific court instructions to petition for major medical treatments, removal from life support)
  • consents for treatment
  • make sure ward is fed, housed, educated, entertained and supervised
  • may hire aides
  • if no guardian of property is appointed
    — arrange to be rep payee
    — initiate lawsuits
  • pay debts

Examples of Powers: Guardian of the Estate/Property (Conservator)

  • prudent investment of assets
  • management of bank accounts
  • maintain home
  • prepare tax returns
  • participate in operation or management of ward’s business (court orders will have very specific instructions for the guardian)
  • financially support dependents
  • establish and maintain fiduciary accounts (guardianship accounts cannot have checkbooks, debit cards so money is transferred into fiduciary accounts)
  • provide for cost of care (not arrange for it – Guardian of Person arranges for care)

Does a Guardianship last forever:

  • duration determined at hearing (can be temporary or permanent)
    (One example given was a situation where guardianship only lasted a year to move a woman into assisted living)
  • can petition court for termination (can be termination of guardianship or reassignment of the Guardian, themself)
  • can petition court for removal

How do you avoid a Guardianship?

  • power of attorney
  • health care proxy
    — Including power to make end of life decisions
  • MOLST form (POLST, in CA) – signed by individual and their doctor specifying what types of care the individual allows and disallows.

Guardians MAY NOT…

  • prohibit a ward from marrying
  • vote for the ward (but can assist)
  • Need court approval to consent to:
    — civil committment
    — electric shock treatment
    — dissolution of marriage

Uniform Adult Guardianship and Protective Proceedings Jurisdiction Act (UAGPPJA)

  • all states (excepting 4)
  • goals
  • jurisdiction
    — transferring guardianship between states
    Example: A ward owning property in NY has a guardian appointed in NY but moved to one of the 4 states not covered by UAGPPJA, so they will have to start over and have a guardian appointed in that state. If they had moved to a state covered by UAGPPJA they could have filed a single form to extend that guardianship to the new state, as well as NY.

This really comes in handy when moving an elder between states and keep a single person as guardian. Also allows family to bring suit in the most convenient state if another family member ‘kidnaps’ an elder to another state.

Additional Resources to find legal advice near you:

  • American Bar Association
  • NAELA (National Academy of Elder Law Attorneys), naela.org
  • Local Bar Association

Question and Answer

Q. Are self initiated guardianships always granted by the court? Is this process easier than when initiated by someone else?

A. A self initiated guardianship is fairly rare. Most people who have the ability to say that they want a guardian have the capacity to sign a power of attorney, which is easier and cheaper. There is still a court evaluator appointed and a full investigation and report done. Of course, the proceeding is much easier than when multiple family members are arguing, but you still need to establish a strong need to the court.

Q. Can an APS employee request guardianship for a client?

A. If an APS employee is called to a home and feels guardianship is necessary, they will make a report to the NYC legal department and the city is the petitioner. The APS employee testifies for the city, but they are not the petitioner.

Q. Is the POA short form can be used for benefits and entitlement instead of guardianship?

A. Yes. One way to avoid guardianship is to have a valid, comprehensive POA in place. In NY the standard POA is 16-pages long and that’s the short form. As long as it has all the powers required it can be used in place of guardianship and can be a defense to a guardianship petition.

Q. Please give a few more examples of the need for guardianship.

A. What are the functions of day-to-day living and is there someone appointed to accomplish those tasks for you? If you are not able to bathe yourself and do not have the ability to know who to call for help or to make arrangements to hire in-home care and to pay them, you qualify as someone who would benefit from guardianship. It is the physical and cognitive incapacity combined that usually can be demonstrated to justify a guardianship petition. If you have one or the other you probably don’t require guardianship.

Q. How can a family member get a guardian changed if they do not feel they are doing a good job?

A. Each state is different, but basically you file a petition with the court asking for the guardian to be removed and why. The court will evaluate the situation and make a decision. In NY there are guardianship offices to help families file the paperwork properly.

Q. Does a guardian appointed in a will have the same powers as those appointed by a court?

A. The only time we appoint a guardian in a will is for a minor, if both parents become unable to care for the child, so no. Usually, a guardian for a minor has full authority, not restricted as for an adult.

Q. How would the court decide between siblings disagreeing about the care of a parent?

A. This happens quite a bit. In a case one daughter decided her sister was mistreating their mom. She petitioned the court to have herself appointed guardian to save mom from the sister who was guardian. She needed to prove to the court her mom could not make her own decisions or was under duress by the present guardian or that mom was in danger physical or financially by the present guardian or that the present guardianship was being misused.

Q. Are attorney fees awarded to the victor in this type of dispute?

A. If a petition is brought and guardianship is appointed, the fees are paid for out of the estate. However, if there is a contesting of the guardianship and it is found to be unfounded, the court has discretion to assign fees to the petitioner.

Q. How many times can a ward change guardians?

A. Guardians stay in place until they retire, move, die, are petitioned to be removed for cause, etc. They do not change frequently.

Q. The POA documents my parents signed are in case they are unable to take care of their own affairs, but we feel they need to be used now, but we still have to petition the banks, clinics, etc. How is this simpler?

A. If you have a checking account with a POA not on file with the bank the bank doesn’t know it exists, so you have to submit the POA and have it approved before the agent can act. That is still simpler than going through the courts.

Springing POA is a document that only comes into effect if a person is incapacitated which may require a medical professional put it into effect and needs the POA to act on their behalf.

Q. Is there a standard amount a guardian is paid? It that monthly or annually?

A. Annually is typical, but it is up to the court. The amount varies based on the value of the estate and whether the guardian accepts payment at all.

Q. What happens if the AIP is low income and cannot afford the guardian fees and the court says they must pay them?

A. In NYC there are community guardians for low income cases, but on Long Island they don’t have those. There is a preference for family members to be guardian, which is often free or minimal amounts. If the court appoints a lawyer to be guardian the court can also choose not to assign payment for that service. Courts try not to spread these guardianships around so it does not become a financial burden on the lawyers providing guardianship services.

Q. Caregivers of those with dementia struggle with putting a POA in place so that it is in effect when it is signed.

A. In NY, the affidavit of full effect says, this document is valid at the time it is signed and the person signing has capacity and cannot be revoked due to incapacity. The same as a durable power of attorney.

“How to Ask for Help and Actually Get It – People want to help you. You just have to ask.”

This recent New York Times article is about asking for help. Advice is always given to caregivers to have a specific list of ways that you’d like others to help you or your family member.

The author refers to Heidi Grant, a social psychologist and author of
the book “Reinforcements: How to Get People to Help You.” She
indicates that people want to help you, but you have to ask for help.
Ms. Grant says there are four crucial steps to asking:

* “First, make sure the person you want to ask realizes you need help.
Thanks to a phenomenon called inattentional blindness, we’re
programmed to have the ability to take in and process only so much
information, ignoring the rest.”

* “Second, and the other side of that coin, make clear that the person
you want to ask understands your desire for help — in other words, you
have to ask.”

* “Third, be specific with your request and make sure your helper
knows why you’re specifically asking him or her and not someone else
(or worse, asking a group).”

* “Last, make sure the person you’re asking has the time and resources
to help. We’re all busy, sure, but you probably don’t want to ask for
help from the co-worker who’s juggling five different projects, moving
apartments and prepping for a vacation.”

Here’s a link to the article:

www.nytimes.com/2018/08/20/smarter-living/how-to-ask-for-help-and-actually-get-it.html

How to Ask for Help and Actually Get It
People want to help you. You just have to ask.
The New York Times
Smarter Living
By Tim Herrera
Aug. 20, 2018

 

“Compassion fatigue,” including typical trajectory – Notes

On August 1st, Caregiver Teleconnection hosted a teleconference by social worker, Amy Cunningham, on the topic of compassion fatigue as experienced by caregivers.

Amy explained the difference between stress, burnout and compassion fatigue. She identified the signs, symptoms and trajectory of compassion fatigue as well as the five habits of resiliency that can help caregivers to grow, rather than be traumatized by caregiving.

There are five habits you can develop that, when practiced every day, will not only make you the best caregiver you can be (happier, more energetic), but keep your health intact so you will be able to care for your loved one for as long as they need you.  The habits of resiliency include:

#1 – Physical resiliency
#2 – Spiritual resiliency 
#3 – Emotional resiliency
#4 – Psychological resiliency
#5 – Self care

Amy reviewed the typical trajectory compassion fatigue takes:

Phase 1 “Zealot” – full of enthusiasm, go the extra mile, handholding, extra care, willingness to do anything

Phase 2 “Irritability” – begin to take shortcuts, avoid people and conversation about work, make mistakes

Phase 3 “Withdrawal” – clients become irritants, enthusiasm disappears, avoid discussing your job, avoid people & work

Phase 4 “Zombie” – go through the motions, no humor, no fun, disconnected from emotions, lost compassion, lost hope.

You can find the audio recording here:

soundcloud.com/caregiverteleconnection/compassionfatigue8118

To sign up for email announcements about these conference calls, sponsored by the WellMed Charitable Foundation, check out:

caregiversos.org/caregiver-teleconnection/

Brain Support Network volunteer Denise Dagan listened to the conference call and shared the notes below.

Robin

—————————————————————

Notes by Brain Support Network volunteer Denise Dagan

Compassion Fatigue
Speaker: Amy Cunningham, Social Worker

Caregiver Teleconnection
August 1, 2018

Amy personally experienced compassion fatigue.  Afterwards, she recovered she developed a curriculum to share with others how to identify symptoms and overcome compassion fatigue.

During a flight with her 5 children under 9, even though Amy was attentive to the flight attendant’s instructions, a flight attendant came to check with her that Amy understood the importance of putting her own mask on before helping her children.  That’s how caregiving is.  Our first instinct may be to care for our family member before ourselves, but if we are incapacitated by the stress of the situation, we are of no help to our family.  You must look after your own needs first!

Stress is difficult to define because it is subjective.  What one person finds stressful, another person may not find stressful.  Stress is unavoidable and not a bad thing with the right mindset and self care.

A good place to begin is to do a self assessment – and don’t lie to yourself or others about how you are managing.

Deviation from baseline is what you want to pay attention to in your self assessment.  Consider these personal attributes:
* If normally you have a good memory but lately you can’t remember anything – you may be overstressed.
* If normally you are in good spirits but lately you are short tempered or moody – you may be overstressed.
* If normally you are well coordinated but lately you are dropping things constantly – you may be overstressed.
* If normally…  Can you identify areas where your normal is deviated from baseline?

We all wear many hats, but how do they affect your stress level?  What is the cost to your health, family or workplace?  If you are a tired, cranky employee, you come home and are a tired, cranky Mom/Dad/daughter/son etc.

Homework:  Take 10 minutes every day to do something you enjoy.  If you have more time to devote to your own joy – do it!  This homework is especially for those of you who feel as though you don’t even have 10 minutes to take care of yourself.
Run, walk, read, meditate, watch a video w/a coffee, tea or soft drink, call a friend or relative (but don’t talk about caregiving!)

What is compassion fatigue?  For today’s talk, it encompasses vicarious traumatization, compassion fatigue and secondary traumatic stress, as follows:

* Vicarious traumatization – a state of tension and preoccupation with someone whom you have helped or are helping.  It can manifest either as reliving (PTSD) a traumatic event another experienced – OR – you begin to avoid all reminders of a traumatic event.

As an example: when Amy was working in a group home she was listening attentively to a client’s traumatic event.  In the middle of that conversation Amy’s cell phone rang.  She grabbed it and swiped the screen to silence it.  Henceforth, whenever her cell phone rang she recalled the trauma her client was describing.

Having a vicarious traumatization response happen up to a few months from the original hearing of the trauma is normal for those who devote themselves to caregiving because they tend to have a higher threshold of empathy.  Empathy is the ability to put yourself into another’s shoes.  You should be concerned if you experience a vicarious traumatization response longer than a few months or it begins to deviate your behavior from your baseline.

* Compassion fatigue – used to just be called, ‘burnout.’  It is a state of tension and preoccupation with someone whom you are taking care of, a traumatized survivor.  Generally a work related secondary exposure to an extremely traumatic, stressful event.  ‘Work’ includes unpaid, family caregivers, as they are still at risk.

* Secondary traumatic stress is about being afraid.  This is especially seen in child protective services workers where they begin to believe everyone is out to threaten them and their family.  That is an extreme example of how stress affects your behavior.

The term, ‘burnout,’ encompasses a range of degree all the way up to compassion fatigue.  In its simplest form burnout is a state of extreme dissatisfaction with your work.  It is a work related hopelessness and a feeling of being ineffective.

To distinguish between burnout and compassion fatigue.  Ask yourself, “Do you love the kind of work you’re doing?”  If the answer is yes, but you feel some of the symptoms Amy will describe, you may have compassion fatigue.

Symptoms of compassion fatigue:  Significant deviation from your individual normal in these areas are common symptoms of compassion fatigue.

* Emotional indicators – anger, irritability, sadness, depression, prolonged grief, numbness (not wanting to feel anything).  There are some incidents where the timeframe for grief is nearly infinite.  Amy is not talking about those circumstances.

* Personal indicators – isolation (pushing others away, not wanting to communicate), cynical, pessimistic, critical, mood swings, substance abuse (alcohol, drugs, food, sex, attention, TV binging) to fill a void, memory or concentration problems, self entitlement (justification of negative maladaptive behavior because of the things you do, e.g. social worker stays up all night with a client but the next day they are cranky with coworkers, e.g. someone who worked 60hrs in a week helping others, then announce they will be wasted all weekend)

* Physical indicators – general sickness, cold of flu symptoms, sleep issues, no energy, insomnia.  Note: Disruption of normal sleep patterns can cement PTSD symptoms because sleep is when the brain cleanses itself of traumatic events.  If you are not getting good sleep as a caregiver, you should make sleep a priority by trading the night shift with another caregiver so you do not further traumatize yourself and contribute to caregiver fatigue.

* Work indicators – avoiding certain people, missing appointments, suddenly becoming tardy frequently, lack of motivation, just ‘going through the motions,’ being a workaholic (certain personality type: when things get tough, they get tougher), becoming demoralized, feeling under appreciated or under-resourced (when those challenges of the job didn’t used to bother you)

Compassion fatigue can be arrested and treated at any time.  You just need to identify it to be able to move beyond it.

The typical trajectory compassion fatigue takes:

Phase 1 “Zealot” – full of enthusiasm, go the extra mile, handholding, extra care, willingness to do anything

Phase 2 “Irritability” – begin to take shortcuts, avoid people and conversation about work, make mistakes

Phase 3 “Withdrawal” – clients become irritants, enthusiasm disappears, avoid discussing your job, avoid people & work

Phase 4 “Zombie” – go through the motions, no humor, no fun, disconnected from emotions, lost compassion, lost hope

One student of Amy’s compassion fatigue said she is in phase 1 Monday, phase 2 Tuesday, phase 3 Wednesday and phase 4 Thursday and Friday.  Amy wonders how true that is for many people.  The idea is that if you can take care of yourself and find balance between what you need and what you need to do, you can be your best for both yourself and your care recipient.

One study found people who experienced growth after trauma, so they studied them to find out what they did differently.

They found 5 habits of resiliency that, when implemented daily, result in retraining your brain resulting in personal growth and longevity.

#1 – Physical resiliency: good sleep (6-8hrs, 5dys/wk), nutrition (Mediterranean diet), exercise (take stairs, park at edges of parking lots to get more steps in a day).  It is important to tell yourself that you are intentionally doing these things for your own well being because our brains are hard wired to recognize threats to our safety.  You have to reinforce the positives that you do for yourself to get the most benefit, to remind yourself to make these changes and to reinforce these new habits.

#2 – Spiritual resiliency: prayer, meditation and strong relationships (at least 1-2 people who know your good, bad & ugly)

#3 – Emotional resiliency: cry (releases endorphins which are natural pain relievers), laugh (laughing can relax you for up to 45 minutes, reduce risk of heart disease), give & get physical contact (increases oxytocin, making you feel more bonded to others)

#4 – Psychological resiliency: acknowledge your own personal victories (even if it is for something you do every day like put food on the table for your family.  Acknowledge that the meal is well balanced, it is on time, or that you dressed the table with a cloth or flowers.  Give yourself credit for a job well done throughout your day, every day)

#5 – Self Care: especially in your transition from work to personal time – take off your badge, change clothes, give yourself some music or meditation on your commute home.

Question and Answer

Q. A couldn’t believe her mother was living this long and wondered how long will caregiving for her mother go on?

A. Don’t feel any shame around that.  It is normal and doesn’t mean you love her any less, but that you have a constant demands on you and pressure.  Taking time to implement these habits of resiliency is important so you are not only giving your best, but you are your best.

Q. It is interesting to say that stress is a deviation from whom we really are.  In my case I always enjoyed gardening.  Now I don’t feel like it.  To relieve stress should I go back to gardening?

 

A. Don’t force yourself to do a therapeutic activity because that would have the opposite of the intended affect.  At the same time, our natural mechanism is to push away those things that used to bring joy.  It may be like exercise, most people don’t want to do it, but we feel great after we’re finished.  Try to bring gardening back into your life.  If you find you no longer enjoy it, even after you finish, move on to some other activity you can look forward to.

Q. Someone told a listener that the best way to relieve stress is to get yourself physically away from the stressful situation.

A. That can certainly help to some extent, but you want to make sure that you’re not just running from the situation.  It is not always possible to get physically away so finding moments when you can find stress relief in the middle of the day like through meditation, funny videos, taking a short stroll, reading, etc. is beneficial to your health, boosts your energy and improves your interaction with your care recipient.

Q. What do yo mean by physical contact?  Can it be with a pet or child/baby?

A. Absolutely! doesn’t matter if you are touching another person (of any age) or a pet.

Registration now open – Multiple System Atrophy Conference, Sept 28-29

Registration is now open for the Multiple System Atrophy Conference!  The conference is co-hosted by the MSA Coalition and Stanford University.  Brain Support Network will be exhibiting, providing volunteers, and speaking on the topic of brain donation.

When:
Friday, September 28th, 10am-9pm
Saturday, September 29th, 8:30am-5pm

Where:
Hyatt SFO (in Burlingame, just off Highway 101)

Cost:
Free

Below, I’ve copied the agenda that the Coalition posted to its website.  Friday’s talks will focus on practical information for living with MSA, support services, and therapies. There’s a reception and dinner on Friday.

And Saturday’s talks will feature Stanford’s Kathleen Poston, MD,
movement disorders specialist, and Mitchell Miglis, MD, autonomic
disorders specialist. Other physicians from Stanford and various Bay
Area clinics will address topics of sleep, urology, bowel dysfunction,
etc. Researchers from around the US will give updates on the latest
MSA research.

The agenda doesn’t say but I believe registration opens around 9am on
Friday. The conference runs from 10am to 9pm on Friday. Registration
opens at 8am on Saturday. The conference runs from 8:30am to 5pm on
Saturday.

Register here

I don’t see a deadline for registration but I would think it’s several days before September 28th.

The Hyatt Reservations number is 800-233-1234.  The MSA Coalition’s room rate is $216/night.  A limited number of ADA rooms are available.

Robin

————————-

You can find the tentative conference agenda here:
(scroll down about half way)

Friday, September 28, 2018

[We are assuming registration begins around 9 a.m.]

10 a.m. – 10:15 a.m. Welcome by Stanford University Hosts and MSA
Coalition Board Chair

10:15 a.m. -11:00 a.m. Overview – MSA & Research 101 – Dr. Kathleen Poston

11:00 a.m. – 12:00 p.m. Support Group Meetings

12:00 p.m. – 1:00 p.m. Lunch

1:00 p.m. – 4:00 p.m. Afternoon Workshop Sessions

There will be multiple time slots with two or three sessions per time
slot and selected sessions will be repeated. Topics will ranch from
practical information for living with MSA, support services,
therapeutic approaches to address symptoms, and research information
and participation opportunities.

5:15 p.m. – 6:00 p.m. Reception

6:00 – 9:00 p.m. Dinner Program

Saturday, September 29, 2018

8:00 a.m. – 8:30 a.m. Registration & Breakfast

8:30 a.m. – 8:45 a.m. Welcome by Stanford University Hosts and MSA
Coalition Board Chair

8:45 a.m. – 9:45 a.m. Symptoms & Treatment Management

Movement Disorder Issues – Dr. Kathleen Poston
Autonomic Issues – Dr. Safwan Jaradeh and Dr. Mitchell Miglis
Sleep Issues- Dr. Mitchell Miglis and Dr. Michelle Cao

9:45 a.m. – 10:30 a.m. Medical Q & A

10:30 a.m. – 10:45 a.m. Break/Activity

10:45 a.m. – 11:45 a.m. Interdisciplinary Panel – Dr. Kathleen Poston
will facilitate a panel discussion among medical specialists in areas
such as urology, gastroenterology, and cardiology with specific
respect to MSA.

11:45 a.m. – 12:15 p.m. Panel Q & A

12:15 p.m. – 1:30 p.m. Lunch & Exhibits

1:30 p.m. – 3:00 p.m. MSA Research

Natural History Study & Update from 6th International MSA Congress
-Dr. Mitchell Miglis & Dr. Lucy Norcliffe-Kaufmann
Clinical Trials & Relevant Studies– Dr. Daniel Claassen
Research Highlights & Future Directions – Dr. Vik Khurana

3:00 p.m. – 3:15 p.m. Break/Activity

3:15 p.m. – 3:45 p.m. Research Q & A

3:45 p.m. – 4:00 p.m. Closing Remarks

4:00 p.m. – 5:00 p.m. Support Group Meetings