“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.