“Role Reversal: Taking Care of Older Loved Ones” – Webinar Notes

Earlier this week, Fidelity hosted a webinar on the role reversal adult children caregivers experience in caring for their parents. Though focused on adult children caregivers, I think the webinar has lots of useful content for all of us.

A Fidelity estate planning specialist and a psychiatrist addressed these five topics:

– Having a series of conversations to identify the needs and desires of elder(s) in order to create a plan (or roadmap) toward achieving those goals.

– Consulting a legal advisor to learn what documents should be in place to ensure those desires are met.

– Consulting a financial advisor so you can plan in advance for where the elder(s) can afford to live.

– Anticipating the elder’s needs and making modifications to the current situation or moving the elder to someplace affordable, appropriate to his/her needs, and hopefully someplace he/she approves.

– Take care of yourself. Consider the personal and financial impact if you choose to do hands-on care.

Brain Support Network volunteer Denise Dagan attended the webinar and shares her notes (below). Fortunately it wasn’t a sales pitch for Fidelity.



Notes by Denise

Role Reversal: Taking Care of Older Loved Ones
August 16, 2017
Webinar Hosted by Fidelity

Role Reversal = They were there for you and now you need to be there for them.

The impact on caregivers is stress that impacts health, happiness and their financial situation.


Preparing for Care

You can’t gauge how long someone will live based on their parents’ longevity.

Best to have a conversation early about their finances, how they would like to be cared for, and to put all the necessary documents in place with instructions for family to follow when a parent dies.

Trying to have those conversations in the midst of a crisis just makes it more difficult.

Don’t think getting the necessary information and documents in place is a ‘one-and-done’ thing.

Start talking about it during natural gatherings, like holidays. Keep having those conversations until you have everything in place you will need.

Fidelity’s Aging Well Guide – More detailed information than this 1-hour webinar.

Fidelity’s Health Event Checklist – Pretty cool because you can download it and fill it in on your computer to document which documents you have completed and their location, and a summary of your care plan.

Fidelity’s Making Conversations Easier Booklet helps break down the overwhelming nature of the tasks.

1. Getting Grounded – What do you want to get out of the initial conversation? Where are you going with these conversations? Even people who do social work or are lawyers feel overwhelmed.

2. Get set – Specific conversations, even involving grandchildren, because it is a teachable moment. Approach these conversations as a family or team effort. Don’t give up if there is disagreement. Divide the tasks or research and come back together with new information to see if everyone can agree or compromise.

3. Get started – Pick a natural place to have a conversation that has no distractions, especially if you can find neutral territory. Involve distant participants through Skype or Google Hangouts. Verbalize your hope to put any family divides behind you by coming together to help a needy family member as a team.

Four Steps to Prepare:
1- Identify signals – unpaid bills, messy household, etc. are red flags they need help.
2- Push for autopilot – auto bill pay, etc.
3- Include both parents
4- Be part of meetings – meet their financial advisor, lawyer, but also neighbors and friends.

Key Documents:
* Power of Attorney – designates someone to be your health care proxy and/or legal proxy.
* Health Care Proxy – who has authority to make health care decisions for you if you are unable.
* Living Will – instructions for the health care proxy
* Will or Revocable Living Trust – an elder law attorney will help you know which is best for you.
* Documents you sign in the hospital only apply to that procedure and do not follow you forward, even at the same hospital.

Do all of these in advance. During a crisis is too late!


Managing & Paying

As soon as you finish one stack of paperwork, there’s another added to the pile.

Someone is ready for discharge from the hospital, but the family is unprepared to handle their care.

Do you have enough money to pay for care?

Where should an aging person live? Most people want to stay in their own home.

What would family have to sacrifice or give up in order to enable someone to remain in their own home?

You can put in your living will where you prefer to live.

Home Features for Added Safety:
– No-step entry
– Single Floor living
– Extra-wide doorways and halls
– Accessible electrical outlets

Build the cost or retrofitting a house for seniors or disability into a long-term budget.

Recognize that if you want to leave a financial legacy, you may be unable to do so.

Long-term care insurance considerations:
– Who are you buying the policy for? Consider the health spouse.
– Where are they likely to get care? Where do they want to live? Who’s going to provide that care?
– How will you fund long-term care insurance premiums as well as living expenses of the preferred location?

Continuing Care Communities combine standard living units with assisted living, memory units, and/or skilled nursing on one campus. It is ideal for spouses with very different care needs. Have a lawyer and financial advisor go over the cost/benefit of one of these places.

What about having elders move in with you?
– Maintaining privacy, grab bars, help with activities of daily living, etc.
– Many family members take this on themselves to the detriment of their own health and financial situation.
– You may be eligible for tax breaks if they qualify as a dependent.
– Flexible spending account may work for you. Talk with a financial advisor. It is not the same as a Health Savings Account.
– Does the care recipient qualify for veterans benefits?

Be aware of the stress you are taking on when you take in a loved one, especially if you are doing hands-on care, yourself. If you feel the stress talk to the care recipient, your doctor, your family, your religious leader. Brainstorm ways to relieve the stress for both caregiver and care recipient.

If you see the signs that your aging loved one need assistance, like unpaid bills, messy homes, body odor, etc. AND you don’t already have a plan in place, it is time to begin addressing the most urgent need first. Carve out some time to talk about those priorities and how they would like to handle it. It might be a private or a family meeting. This is the time you need to have (or get) your documents in place, before their ability to participate slips even further.

Know what documents your family member has already done. Where are those documents, who helped prepare them? Go meet the people who have helped put those documents together. It would be best to create a letter of instruction and suggestions for your inheritors to know where everything is and what to do in what order after you die. Hand it to your inheritors to be opened after you die.

Build the plan proactively. Done in an emergency they are not well thought out and are usually more expensive.

Understand Medicare doesn’t pay for long-term care, and never pays for lodging except in skilled nursing. Often, this leaves the well spouse bankrupt because they did not financially plan in advance and understand what their expenses will be in their elder and unwell years.


Taking Care of Yourself

Having others you can rely on, talk to, help make decisions with are really helpful.

Find some time for yourself every day to feed your own needs (nutrition, exercise, sleep, relaxation).

If your own health declines, you cannot be available to care for someone else.

More and more millennials are taking care of elders which often means leaving full time work, passing up promotions, depleting 401K contributions.

Caregiver burnout is a real thing that damages your health, when demands overwhelm your resources with respect to your energy and time. Who is the likely person to take over for you, but sometimes they live far away. They can still help financially, or by taking the time to find you local resources. Be sure to include some reserves in your financial plan for someone to step in if/when the primary caregiver becomes unavailable.

Be sure to have your elder sign a HIPAA form so you can have access to their medical information when they become unable to explain their medical circumstances, personally.

Getting all these things in place are also teachable moments for the youngest generation in your family.

Use these conversations as a way to connect with your elder, share family stories, what they want their legacy to be, etc. It can really bring families together when they take this good side with all the hassle and frustration of arranging documents and putting a plan in place.


Wrapping Up

– Take time to listen
– Ask, don’t assume
– Lean into your own well being
– Know your resources

Think broadly about getting documents together, not just about the unwell person but their well dependents.

Build a roadmap to ensure there’s a plan in place. No plan is perfect, but it guides you when things come up.

Have the conversation to tell people what you’ve done and where to find things

Take stock of who’s “family”? Who might come to depend on you and who do you depend on?

Identify documents and gaps
Put a team together to fill those gaps
Put the emergency plan in place.

Fidelity has documents and resources they recommend to address both financial and long-term care plans.

“A Stranger in My House? No Way!” (when someone refuses care)

Seniors At Home is a home care agency in the San Francisco Bay Area. Here’s a good article about talking to an older adult who refuses care:

How to Talk to an Older Adult Who Refuses Care
“A Stranger in My House? No Way!”
Seniors At Home
The article details “eight strategies you can use to navigate tough conversations if there is a resistance”:

1.  Be prepared

2.  Normalize aging and the need for care

3.  Address fears and concerns

4.  Focus on the positive

5.  Share your concerns

6.  Start small

7.  Stick with it

8.  Bring in a professional


“How to Take Care of Others Without Burning Out”

There’s a good article in Monday’s TIME Health on avoiding caregiver burn-out.

To avoid burn-out, we’re told that self-care is critical. “The question is: What does self-care look like, and how much of it do we need? As it turns out, the trick is to be other-focused and kind, but to balance that with taking care of yourself as well.”

The article lists three “practices” to help you find that balance:
* self-compassion
* social connection
* empathy and compassion

The article ends with this advice:

“Self-compassion, social connection, and empathy are powerful forms of self-care—but that doesn’t mean that traditional self-care activities have no place in our lives. Keeping your spirits up with exercise, sleeping in and making room for fun activities like movies or shopping are important. These pleasures give us short bursts of happiness that can help fuel us and keep us playful in life. To complement these more physical pleasures, however, giving and connecting with others in positive ways will bring us long-lasting feelings of joy that come from a life of purpose and meaning.”

Here’s a link to the full article:


Mental Health/Psychology
How to Take Care of Others Without Burning Out
Emma Seppälä
Aug 07, 2017
TIME Health



“Even healthy people need a living will, but many people don’t want to think about it”

This is a good article from today’s “Washington Post” (washingtonpost.com) on why people may not complete a living will. The author makes the point that even if you don’t have a living will, everyone (healthy or not) should designate in writing a healthcare proxy and, ideally, have a discussion with the proxy about end-of-life wishes.

Here are some excerpts from the article:

* Even though advance directives have been promoted for nearly 50 years, only about a third of U.S. adults have them, according to a recent study. People with chronic illnesses were only slightly more likely than healthy individuals to document their wishes.

* “Many people don’t sign advance directives because they worry they’re not going to get any care if they say they don’t want” cardiopulmonary resuscitation, said the study’s senior author, Katherine Courtright, an instructor of medicine in pulmonary and critical care at the University of Pennsylvania. “It becomes this very scary document that says, ‘Let me die.'”

* That’s where the health-care proxy comes in. Just naming someone isn’t enough, though. To be effective, people need to have conversations with their proxy and other loved ones to talk about their values and what matters to them at the end of life.

The full article is worth reading:


Even healthy people need a living will, but many people don’t want to think about it
By Michelle Andrews
Washington Post
August 7, 2017 at 7:00 AM



“Five Tips for Care Partners”

Here’s an infographic of the American Parkinson Disease Association’s (apdaparkinson.org) “Five Tips for Care Partners”:


In short, the five tips are:

* Manage your stress
* Keep your own needs in mind
* Be realistic
* Take a break
* Accept changes

Certainly these five tips apply to all caregivers, not just Parkinson’s caregivers.

Most of the infographic is copied below but it’s much nicer to read online!



FIVE TIPS for Care Partners
American Parkinson Disease Association

1. Manage your stress
Consider how stress affects your body stomach aches, high blood pressure) – and your motions (overeating, irritability). Find ways to relax.

2. Keep your own needs in mind
You are the emotional support of your loved one. But, you also need someone to support your emotional needs. Talk openly and honestly with a friend or another loved one. It is important to know you are not alone and that someone else somewhere is in a similar situation that you are.

3. Be realistic
The care you give does make a difference, but many behaviors can’t be controlled. Grieve the losses and focus on the positive times as they arise.

4. Take a break
As a care partner, it will be important for you to continue with your personal social life, exercise regularly and eat healthy. Don’t try to do everything for your loved one. If possible, allow him/her to do some daily activities on their own. This will allow you a break and it will allow him/her to be reassured that they do not need help with everything.

5. Accept changes
Eventually your loved one will need more intensive kinds of care. Research care options now so you are ready for the changes as they occur. There will be many transitions throughout the Parkinson’s journey, such as moving from a walker to a wheelchair. Don’t be afraid to ask for and accept help from your doctor, APDA, or your friends and family. Asking for assistance is a positive step for you.


“Caregiving Is Hard Enough. Isolation Can Make It Unbearable.”

This article from yesterday’s New York Times “New Old Age” Blog is about caregiver isolation. Here are key excerpts from the article:

* Like so many caregivers, [Ms. Sherman-Lewis] has discovered that along with the abandoned career, the hands-on tasks, the medical scheduling, the insurance tussles and the disrupted sleep, she faces another trial: social isolation.

* “Caregiving is done with a lot of love and affection, but there’s a lot of loss involved,” said Carey Wexler Sherman, a gerontologist at the University of Michigan Institute for Social Research. “People talk about friends disappearing, about even family members not wanting to be involved. It’s a lonely business.”

* Sometimes, caregivers isolate themselves.

* Yet a habit of avoiding others — or watching them avoid you — collides with a growing body of research showing how damaging isolation and loneliness can be. They are associated with a host of ills, including heart disease and stroke. Among older people, isolation is linked to depression, even higher mortality. Lonely old people, Dutch researchers have found, are more apt to develop dementia.

* “The support is what leads to less stress, less depression, better health and delayed nursing-home admissions,” Dr. Mittelman said. Interestingly, her team has found that “instrumental support,” in which others actually help with tasks, has less impact than emotional support. “Having someone outside who is paying attention and who cares is more important,” she said.

* “Don’t invite me for lunch — you know I can’t go,” Ms. Sherman-Lewis said. “Just bring a pizza and a bottle of wine and come by.”

The full article is worth reading:


Health | The New Old Age
Caregiving Is Hard Enough. Isolation Can Make It Unbearable.
by Paula Span
The New York Times
Aug. 4, 2017


Drawing and using a care map (Atlas of Caregiving)

This post is about creating a “care map.”
In November 2016, Brain Support Network volunteer Denise Dagan attended a seminar on developing a care map, according to the Atlas of Caregiving (atlasofcaregiving.com) approach. See those seminar notes here:
The Atlas of Caregiving website has three videos from April 2017 about drawing and using a care map.  A care map is “a hand-drawn representation of a caregiver’s network.  It illustrates the caregiver’s own support system, highlights what is working well, and often reveals duplication or gaps in care and resources.”  You can find the videos here:
The goal of a care map is to help family caregivers improve your daily life.

This might be something worthwhile to do with a geriatric care manager.


13 ways to practice self-care as a caregiver (CareGiving.com)

This recent blog post on CareGiving.com is about 13 ways for caregivers to practice self-care. These 13 ways include:

1- talk ourselves through incredibly stressful situations
2- spent time with our faith
3- politely correct the health care professionals who offer suggestions that won’t work
4- calmly request help from services and programs
5- forgive those family members and friends who disappear during the toughest times of our lives
6- let go of the frivolous because we choose the meaningful
7- stay present with our caree during those tough times
8- vent in ways that feel right for us
9- give back to other family caregivers
10- show up to work
11- sometimes just lay on the couch
12- prepare for a future without our carees
13- shed tears

The author gives the advice that if you see a tired, overweight, or stressed family caregiver, “avoid making the diagnosis that self-care is missing. What you see isn’t lack of self-care. It could be lack of help. It could be lack of understanding. It could be lack of support. It could be a lack of financial resources. It may be all of that and more. … You can minimize that stress by pitching in to help, by listening to him or her (and that’s it — just listen) and by thanking him or her.”

Here’s a link to the full blog post:


12* Ways We Care for Ourselves During Caregiving
Jul 21, 2017
by Denise




Apathy – description and treatment

Brain Support Network volunteer Denise Dagan came across this article in a recent Parkinson’s Disease (PD) organization’s newsletter about apathy in PD.  Certainly apathy occurs in many of the disorders in the Brain Support Network community as well — especially progressive supranuclear palsy (PSP).  That’s why I’m sharing the article within our network.

These statements in the article caught Denise’s eye:

“Persons with apathy generally do not recognize the symptoms, so caregivers will need to bring it to medical attention. … It is important to assess for apathy because those with apathy are 2.5 times more likely to report poor quality of life in comparison to those without apathy. Apathy is also associated with more severe motor impairment. PD patients with apathy are less physically active and may not adhere to medical recommendations. Relationships may suffer as well since caregivers often experience more frustration and stress.”

The author of the article is Rosa Chuang, MD.  She may be familiar to some in our multiple system atrophy (MSA) group.  She used to practice at Stanford but is now in Seattle.

The article is copied below.




Apathy in Parkinson’s Disease
Parkinson’s Pathfinder (Newsletter by APDA Northwest)
Summer 2017
By Dr. Rosalind Chuang

Apathy is a common non-motor symptom of Parkinson’s disease but often times not recognized or commonly mistaken for depression. Some studies show that 30-40% of PD patients have apathy, but the frequency can range from 20-70%, depending on how patients are asked. It can occur at any stage of PD and can even occur before motor symptoms develop. It is important to assess for apathy because those with apathy are 2.5 times more likely to report poor quality of life in comparison to those without apathy. Apathy is also associated with more severe motor impairment. PD patients with apathy are less physically active and may not adhere to medical recommendations. Relationships may suffer as well since caregivers often experience more frustration and stress.


Apathy is defined as:
• Loss of motivation or lack of initiative
• Loss of pleasure
• Decreased goal directed behaviors
• Decreased goal directed cognitive activity
• Decreased interests and emotions (reduced display of emotions)


A common complaint from family and friends is that the PD patient just “sits around” or “doesn’t seem to care about anything.” Nothing gets done and a person often declines social activities if given a choice. This can be misinterpreted as fatigue, laziness, or lack of empathy/ uncaring.

Persons with apathy generally do not recognize the symptoms, so caregivers will need to bring it to medical attention. Medical providers may ask specific questions from the Starkstein apathy scale to determine apathy. Some questions on the scale include:

• Any interest in learning new things?
• Does anything interest you?
• Do you look for things to do?
• Are you concerned about your condition? Or unconcerned about many things?
• Does someone have to tell you what to do each day? Do you need a push to get started on things?
• Are you neither happy nor sad, just in between?

As you can see, these questions are similar to those to assess for depression, so sometimes it can be difficult to separate apathy from depression. Often times, patients can have both depression and apathy, but in ~10- 28% of time, patients can have apathy alone.


In both depression and apathy, a person may no longer enjoy things. However, someone with depression may endorse feeling “blue” or sad. Other “negative” symptoms of depression include inappropriate guilt, loss of appetite, loss of sleep, or thoughts of death. An apathetic person does not cry frequently or have suicidal thoughts.


It is important to evaluate if the symptoms are from apathy alone because it can affect treatment. If apathy is associated with depression or anxiety, treatment of co-morbid conditions can help reduce apathy. Sometimes isolated apathy can also respond to the SSRIs used to treat depression, but generally studies don’t show good response. Dopamine medications (levodopa or dopamine agonists) may also improve apathy. (In some patient who have undergone deep brain stimulation for PD, rapid withdrawal of their PD medications resulted in apathy.) In one trial, PD apathy responded to rivastigmine, a medication used for dementia, even though the patients did not actually have dementia.

For isolated apathy, I generally recommend non-pharmacologic treatment. These include:

• Write down at least 3 daily goals and 3 weekly goals. These goals can be physical, social, or thinking activities.
• Daily goals should be specific and can be reasonably achieved.
• Create a schedule: be specific when each task will should be accomplished.
• Review the written list at breakfast, lunch and dinner to remind yourself of the next goal.
• Cross off each task as you complete them.
• Say “yes” to at least one thing every day even if you don’t feel like it.
• Maintain routine: continue to do things you used to do, even if you don’t feel like it.
• Recall an activity that you used to enjoy and try to restart that activity.
• Exercise even if you don’t feel like it.
• Must leave the house at least once a day

Even though apathy is not as easily treated as the motor symptoms of PD or other non-motor symptoms such as depression, simply recognizing and understanding apathy is an important part of overall management of Parkinson’s disease.

“How to Improve Resilience in Midlife” (NYT)

Several years ago, we helped put on a caregiver conference where the keynote speaker talked about building resilience and coping skills in the face of parkinsonism and neurological decline. He said that resilience is both nature and nurture; there are definitely things we can actively do to build resilience. This article in yesterday’s New York Times is about that. Here’s one short quotation from the resilience expert interviewed for the article: “Live your life in a way that you get the skills that enable you to handle stress.”

The expert suggests this approach to improving resilience:

* Practice Optimism
* Rewrite Your Story
* Don’t Personalize It
* Remember Your Comebacks
* Support Others
* Take Stress Breaks
* Go Out of Your Comfort Zone

Here’s a link to the article:

How to Improve Resilience in Midlife
By Tara Parker-Pope
New York Times
July 25, 2017