Five points in helping elderly maintain dignity and sense of control

In this 2012 article in The Atlantic (, two researchers offer caregivers “advice on how to best help the elderly maintain their dignity and sense of control, and strategies to ensure that they don’t sacrifice their health in the process.”

The advice focuses on five points:

1- Reinforce the positive.
2- Allow the senior to make decisions.
3- Remember that seniors are unique individuals.
4- Help them maintain social and family connections.
5- Focus on the little things.

I don’t find that this article has much to do about “self care,” but there may be worthwhile points here, such as focusing on the little things.

Though this article seems written for professional caregivers, I think the message can apply to family caregivers as well.

Here’s a link to the article:

How to Care for Your Aging Loved Ones While Still Taking Care of Yourself
by Hans Villarica
April 19, 2012
The Atlantic



“Family Meetings: Even when a Loved One Resists” – Conference Call Notes

CaregiverSOS ( is a website run by the WellMed Charitable Foundation in Texas.  They offer some services nationally, including Caregiver Teleconnection, which are conference calls with speakers on caregiving topics.  Today’s teleconference was about family meetings.

Caregiver Teleconnection calls are archived within a week of the original presentation.  In about a week, you can find the archived audio recording of this teleconference at:

(You may need to scroll down a bit to find the list of archived recordings.)

Today’s conference call covered these topics:
– What is a family meeting?
– When should a family meeting be held?
– Why do we need a family meeting?
– Identify the purpose of the meeting.
– How to address the issue of a resistant elder.
– Who needs to attend a family meeting?
– Things to consider when inviting people to a family meeting.
– Where to have a family meeting.
– Tips for a successful family meeting.
– A Case Study
– Resources

There are four family meeting-related resources mentioned by the speaker:

1- Book titled “The Caregiver’s Path to Compassionate Decision Making,” by Viki Kind, 2010

2- MN Board of Aging webpage of family meetings at

3- Family Caregiver Alliance webpage on family meetings at

4- webpage on family meetings at

Brain Support Network volunteer Denise Dagan listened in on this morning’s call and shared these notes.



Notes by Denise Dagan, Brain Support Network Volunteer

Family Meetings: Effective Planning for Aging – Even when a Loved One Resists
Speaker:  Kim Olmedo, LCSW, social worker
Caregiver Teleconnection (conference call), by Caregiver SOS
February 12, 2018

What is a family meeting?
Any formal, structured meeting of family members that may also include professionals and/or clergy to communicate about an older adult’s care due to declining health or difficulty functioning.

You can have a family meeting to discuss:
– What kind of care do they want at the end of their life?
– What arrangements must be made to care for their increasing medical needs?
– What arrangements must be made due to their declining cognitive functioning?
– Where shall they live after a medical crisis?

When should you have a family meeting?
– When there are unresolved issues, like the family doesn’t know what kind of advance care planning is already in place.
– When there are new problems, like the elder is no longer able to live alone.
– When safety is an issue, like driving, home safety (stairs, gas burners, etc.), inability to prepare meals or shop, etc.

What is decided during a family meeting?
* Resolve issues, like who will be the primary caregiver?  Who is the back up caregiver when the primary caregiver is ill, working, or on vacation?
* Identify goals, like the timeline for moving into assisted living.  What is the preferred outcome?  Is there a set outcome, or is a final decision something that can be negotiated?  Identify goals for rehabilitation or long-term care.
* What does the family want to accomplish?  What type of care facility is appropriate for their care?  Where should that facility be located?  Nearer to children or in the same community where they have been living.  What are the needs and issues of the care recipient?

Identify the purpose of the meeting:
* Sometimes, the purpose is simply to clarify things, such as an advance care planning meeting, where the issue is determining who the decision maker will be, learning the person’s wishes for end of life care, and completing advance directives.
* Other times there may be a specific purpose or issue, such as lack of safety in the home and what choices there may be to mitigate the safety issues, like private duty home care, moving the elder to a child’s home or into assisted living.
* Have an agenda to keep the meeting on track and moving forward.
* Sometimes, you need to break the decision-making process into a few meetings because it would take too long and be too overwhelming to do all at once.  Sometimes, during the first meeting you find information is missing and it is wisest to break and gather the missing information, then reconvene to discuss how to move forward.

How to address elders resistant to making changes:  
* How resistant is the elder?
* Giving them choices helps them to accept change and adjust well.  However, only present truly available options (that are feasible and which they can afford).  They may not be ideal options the elder prefers, but by having a choice the elder feels a certain amount of control.
* If there aren’t choices available, how can the news be presented in the best possible light?  See the Case Study for an example.  See “The Caregiver’s Path to Compassionate Decision Making,” Viki Kind.  In this book, the author explains how her father could not make decisions, but could have some choice in the big picture.  She researched care facilities and took him to her top two options and let him decide that.  Sometimes, presenting the facts of the situation helps an elder person be able to see that change is necessary.  Treating them as an adult with some choices is helpful to getting their buy-in.

Who should attend a family meeting?
* The care recipient?  Sometimes, No.  If they have dementia or critically ill, they are unable to participate.
* Close family – children and spouse.  Even distant children via Skype.
* Extended family.  Sometimes siblings, nieces, nephews, etc. are very involved.  Don’t leave them out.
* Neighbors and chose friends
* Professionals.  They can be the bad guy, deflecting blame from adult children who must be the hands-on caregiver and suffer wrath.
* A Geriatric Care Manager or Social Worker, if involved.  They can be an objective voice and present disappointing news to the elder person.  If family members present disappointing news, the elder may resent them and be uncooperative toward them.  It is best if a professional or clergy presents disappointing news to elders, especially if they have dementia.
* A long-time friend or clergy member as an ally to the elder person, so they don’t feel “ganged up on” or betrayed by the family & professionals.  Before you choose this person, be sure they will both support the elder as well as the family’s goals, so he/she doesn’t undercut the family’s efforts.

Where do you meet?
* At the elder’s home.  This can be the safest, most convenient place, but if you are discussing moving them from this home it can reinforce resistance to moving away.
* At a family member’s home, although this may not feel safe to the elder.  They may feel “ganged up on” or attacked by the home owner and family.
* At a neutral location; doctor’s office, hospital, lawyer’s office, church, a friend’s house, etc. can minimize extreme responses to the suggestion of a move.

Tips for a successful family meeting:
* Listen to all parties respectfully.
* Treat the elder as an adult and speak directly to him/her.
* Stay focused, don’t bring up family history, etc. that is distracting from the purpose of the meeting.

Case Study:
Lenora (late 70s widow) living at home with mild dementia & in-home caregiver whom she didn’t like.  Didn’t want a caregiver.  Move to assisted living was nearing.  Daughter, Emily, lived out of state and going through divorce.  These two had a difficult relationship and usually argued when talking.  Daughter asked Kim to mediate their phone calls.  Emily was increasingly worried about Lenora’s home safety.  Kim visited Lenora weekly and Lenora frequently commented on Emily’s wellbeing.  Emily and Kim had more frequent conversations about what to do next for Lenora.  Kim met Viki Kind (book author) and asked how to proceed to speak with Lenora about assisted living.  Viki’s input helped Kim realize that Lenora’s worry over Emily could help her transition to assisted living.  Kim acknowledged Lenora’s concern over Emily’s wellbeing and, together, Kim and Emily suggested Lenore move to assisted living as something Lenora could do for Emily to ease Emily’s worry over Lenora during her divorce and with all she had to do daily for her kids and full-time job.  Moving to assisted living in this case was cheaper than in-home care.  Lenora didn’t want to move, but felt she was doing something to help her daughter, so agreed and adjusted to assisted living.  Of course, she missed her home, which Kim and Emily validated, but they continued to thank her for making this adjustment for Emily.

• Kind, Viki. The Caregiver’s Path to Compassionate Decision Making: Making Decisions for Those Who Can’t. TX: Greenleaf Book Group Press, 2010.

Question & Answer:

Q.  Support group leader now finds her own mother has dementia.  Mother lives independently, drives and has big house with several pets.  She has announced over the years she will never leave her home.  Is there anything besides in-home care?  Live-in caregivers?  Daughter lives 3000 miles away.

A.  Most of Kim’s experience with live-in care has not been successful.  There are some situations where it can work, especially if you can find someone younger who is more of a companion than caregiver or a grandchild who would benefit from having a free or cheap home in return for caregiving.  You may start with someone coming in to help with the animals to get her used to having someone coming in.  Once she realized how much help that is, that person (or someone else) may be able to come in and drive for her, or help with other things.

A.  Contact your local animal rescue services.  They may be able to provide an animal care volunteer or find adopted homes for some of the animals.

Q.  How have you found people manage when they have promised their family they would not put them in a nursing home?

A.  It’s not always realistic because of dementia or safety.  It may be physical reasons, like stairs.  Because women work so much more than prior generations, it is unrealistic to promise you will not be placed in a care facility.  Sometimes, a doctor can present reasons why they can’t stay in their home.  Care facilities are SO much better than they used to be, taking them to a few can make the option better than they imagined.

Q.  In Florida, the PACE Program provides in-home support (some dementia, depending on degree).  This can be a gap-filler before Medicare kicks in.

A.  Every state is different.  Area Agencies on Aging (AAA) can provide vouchers to cover some in-home care, but it will be minimal.  Your State’s AAA will know all the resources in your area.  Other resources:  Elder Care Locator: 1-800-877-8116,  You can search by city and need (legal assistance, home modification, etc.).  Aging and Disabled Resource Center (ADRC) for your state/county may also be helpful.

A.  Sadly, demand is expanding, but resources are not.  Assisted living centers are expanding, but they are prohibitively expensive for many families.  There are very few federal dollars for long term care.  Mostly, long term care needs are covered by non-profits.

Q.  In a family meeting, how do you balance the conversation when one or more participants are dominating the conversation?

A.  It doesn’t happen very often, but sometimes there is one participant who defers to another, which can complicate the dynamics of the meeting.  Having an outside, objective participant helps with this.  Having an agenda helps.  Set an end time for the meeting helps.

Q.  My husband’s sons are not capable of care taking and they all have crazy work hours, so I am the conduit to coordinate communication.  I give them each information about advanced directive, etc.  It’s challenging.  It may not be feasible to have everyone in the same meeting.

A.  Use email, closed Facebook group to communicate with everyone simultaneously.  That way everyone received the same information.

Q.  My parents want to stay at home and die at home.  Dad has COPD and Mom has dementia.  It is more expensive than a facility.  Family fear is that we are too late for Mom to move her to assisted living because she needs more care.  Do you get to the point where you have to make the choice for them?

A.  Sometimes they are not able to make that decision.  Viki Kind talks about different kinds of decision making (sliding scale).  Their ability to make decisions depends on their level of dementia.  She had to make that decision for her Dad, but he could decide which one he felt most comfortable with, even which room he would have.  Getting all five of their children on the same page is another issue.

Q.  How is Viki’s sliding scale set up?

A.  If a person has no capacity that is one end of the scale and makes no decisions.  In some assisted living facilities staff puts out two outfits so they make a choice without being overwhelmed.  Depending on their level of dementia, you would limit their options.  They would not participate in medical decisions because they can no longer comprehend the options and potential outcomes, but can say who their medical power of attorney will be.

Q.  What happens for people who have zero resources?

A.  The family would ideally have an assessment from a geriatric care manager, but it costs several hundred dollars.  Beyond that you are looking at services from the Alzheimer’s Association or other organizations.  Often an elder winds up in the hospital and the social work staff will get involved and help the family find options for the elder’s future care.  Some churches have ministries for older adults so look outside the proverbial box.

Q.  How does somebody find a geriatric care manager.  Even though it costs a few hundred dollars it is well worth it, especially if your family dynamics are challenging.

A. – Professionals with training and experience on doing aging assessment.  You may be able to access them through your hospital’s social work office, if your elder is already hospitalized it is worth asking.

“The Coming Family Caregiver Crunch: 8 Tips to Survive” (Forbes)

This is an interesting article from Forbes magazine ( about the idea that 90% of family caregivers are “contributing to and/or coordinating finances for their loved ones. … On average, they’re spending $7,000 a year out of pocket. … Three out of four family caregivers have never discussed their financial role with their care recipient. … Do your parents have a financial caregiving plan? Hint: it’s you. For many baby boomers, it’s an unspoken plan.”

The authors of the study on which these findings are based propose eight tips for adult children caregivers to survive this “caregiving crunch”:

1- Start a family conversation about caregiving.
2- Seek out financial wellness program at work.
3- Explore community resources. 
4- Sign a financial power of attorney. 
5- Sign a health care power of attorney.
6- Write a will and update beneficiary forms.
7- Share financial account information. 
8- Set up a financial advisor meeting.

Here’s a link to the article:

The Coming Family Caregiver Crunch: 8 Tips To Survive
by Ashlea Ebeling, Forbes Staff
1 November 2017


“Choose Your Attitude for the Journey” (empowering caregivers for the long journey)

Though this handout is for a dementia caregiving class by a woman whose husband had Lewy body dementia, I think this resource applies to all caregivers. In the few places below where you see “LBD,” replace that term with the disorder with which you are coping (if it’s not LBD).  See what you think….

Online friend Pat Snyder’s husband John died with Lewy body dementia in November 2015. She is the author of a wonderful book for those coping with the early stages of LBD titled “Treasures in the Darkness: Extending the Early Stage of LBD” (available through Pat generously gave us a copy, which is circulating among local support group members.

Pat is teaching a dementia caregiver class in Wake Forest, NC. Her mission is to teach as many “rubber meets the road” tools and techniques as she can, in a context of preserving personhood for the patient while educating, encouraging, and empowering the caregiver.

Pat recently shared the notes from the first lesson of this caregiving class. She recommends five initial steps that all caregivers take at the beginning of their caregiving journey so that they can be strong for the duration of that journey. The five steps are:

• Be positive
• Be proactive
• Be perceptive
• Be persistent
• Personify the disease

The lesson goes through these five points. Pat gave permission for me to share her lesson notes here.


“Choose Your Attitude for the Journey” (Lesson 1**)
from Dementia Caregiver Class in Wake Forest, NC
by Pat Snyder ([email protected])
February 2018

There are five first steps that I recommend for you to take as you begin your dementia caregiving journey. These approaches will strengthen you in that role for the duration:

• Be positive
• Be proactive
• Be perceptive
• Be persistent
• Personify the disease

Be positive.

After your Loved One’s diagnosis of dementia you are likely to be overwhelmed with negative emotions. These emotions are your first hurdle to overcome, and they tend to be ongoing.

Therefore, a commitment to use positive choices to overcome negative feelings is a technique that will serve you well throughout your time as a caregiver.

Using a positive attitude to overcome a negative situation is not denial of it but a conscious effort on your part to override its impact. There are a number of ways to address this choice of being positive. It takes self-discipline and commitment to fight back an enemy that is trying to steal precious moments from your lives. It often involves doing the opposite of what you are feeling in the moment. So first, identify that negative feeling. Then choose to go in another direction. For example, if you feel sad, try to spend time with a friend who makes you laugh. If you feel empty, make a list of three things for which you are grateful.

These kinds of choices may feel simplistic and artificial when you first start to practice them. Over time, you will feel the benefit of not allowing the negative emotions to swamp you, keeping you in a slump of inactivity and helplessness. You will begin to feel empowered and purposeful in your role. Then you will realize that your positive choices have a profound impact on your Loved One’s experience of dementia.

Be proactive.

You need to take action and not just react to what happens. Being proactive is an ongoing requirement. As you begin to assume your role, these actions will empower you:

• Learn about dementia symptoms.
• Learn about treatments for LBD symptoms.
• Learn about non-pharmacological (non-drug) interventions.
• Learn to identify the specific triggers that affect your Loved One’s experience of LBD.
• Find the right doctor who knows how to treat LBD
• Connect with other LBD caregivers to continue strengthening yourself.

When your Loved One received the diagnosis, you likely also received some printed materials that defined LBD and directed you to some helpful resources available in your community. However, you will need to seek out more in-depth knowledge in order to fulfill your role as the caregiver.

Do not overwhelm yourself in the beginning. Learn about the basics and gradually add more knowledge. It is important to get information from reliable sources. Use only trusted print and non-print resources. Look at the websites of government agencies, universities, hospitals, and associations like LBDA. Find medical journals, articles, and books written by experts and online support groups that offer reliable information and social support. Search for the right doctor who specializes in LBD care or who is willing to learn about proper treatment for this challenging and complex disease. Do not settle for one who does not respect you as the key member of the care team.

Be perceptive.

Be sensitive to the emotional and psychological impacts that dementia can have on you and your family. If left unaddressed, these things can have devastating physical consequences for you and your Loved One. They may determine how gentle the journey is for all of you. The diagnosis is likely to magnify any pre-illness emotional and interpersonal issues. Therefore, it is important to clearly identify those and learn how to manage them better. Doing this could provide significantly better outcomes for everyone. Consider including a counselor as a member of your health care team to help you address communication issues that need attention, relationship dynamics, and any pre-illness issues that can affect how you manage the symptoms of LBD, forgiveness of past hurts, and grief issues.

A second element of being perceptive is to be sensitive to your Loved One’s symptoms. You see him every day, unlike doctors who see him only for a short time during office visits. You need to observe and record changes in physical, psychological, and behavioral symptoms. Report these changes to the dementia specialist and work together to find solutions. Dementia patients may practice “Showtime” behaviors at doctor appointments, which make them seem to be much better than they are on a daily basis at home. Your report to the doctor keeps the information balanced, honest, and accurate. Sometimes changes in medicine can bring about an improvement of symptoms. At other times, non-drug choices can address these issues.

The third element of being perceptive is to identify the specific triggers that affect your Loved One’s experience of LBD in a negative way. This is where many non-drug interventions can have huge positive impacts on living daily with dementia.

Examples of simple changes with big impacts may be:
• Softening the light in the room
• Using oils like lavender to calm agitation
• Playing favorite music
• Having only one person speak at a time while in the room
• Explaining what you are about to do before you begin to do it

These may seem like small things, but they can make a big difference in the person’s disease experience. You must be alert and perceptive to see what things trigger agitation or frustration. Then you can communicate with key individuals how those things must change in order to make the best care choices.

Be persistent.

Being an dementia caregiver is a long-term commitment. It is a marathon, not a sprint.

The term Lewy roller coaster for LBD folks has been coined to describe the experience due to the ups and downs in cognitive, physical, behavioral, sleep, and psychological symptoms. Your choice to be positive, proactive, and perceptive must be of a continuing, ongoing nature. You need to persist through these fluctuations as your Loved One progressively declines. It is a daily choice.

As new symptoms emerge over time, you will need to learn more and stay up to date about research and treatments that could be helpful. As your care continues, you will monitor disease symptoms daily. At times, you may question the efficacy of an intervention. Is the intervention working, or is this symptom simply a manifestation of the fluctuations of the disease? This is a typical question for you to ask in your role as care partner. Sometimes you will use your intuition correctly and change course. Other times you may not discover the answer. That is also typical, so do not blame yourself at these times.

You will also monitor those who are involved in your Loved One’s treatment and support. Part of your role is to teach any new person on the health care team about your Loved One’s expression of dementia. You may also need to teach them how to best approach the situations that arise in his care. You will deal with significant family members and friends who encounter him. All these things involve a consistent approach on your part. If your Loved One moves into a nursing home or similar facility, your role as advocate and educator will escalate.

Your steadfast persistence will pay off in a gentler LBD journey for everyone. This is one of those places in life where you clearly will make a difference. It is not easy, but it is doable — and it is worth it.

Personify the Disease

One of the most helpful decisions I made early in my Lewy Body Dementia journey with my husband was to personify “Lewy”. It had a huge impact on my grandsons as well as on John and me.

John’s neurologist, Dr. Daniel Kaufer, told us on our first appointment with him that preserving personhood was our key goal for John in all decisions about his care. That resonated with me. It became my touchstone when I had to decide what to do as various symptoms and events presented themselves in our journey.

In my mind, I separated John from his disease. I gave the disease a personal kind of name—Lewy. It gave me someone to blame, who clearly was at fault for whatever was happening. It gave me the power to separate John from actions or words he might do or say that were hurtful. “That’s Lewy talking right now. Just ignore it.” I could say that to myself and know that I was correct. John was not at fault. Truth was not being spoken. A clear enemy was in the room with us, and my job became how to outsmart that enemy. It gave me emotional distance so I could think clearly, problem solve better, and respond kindly to John.

I saw it as a kind of psychological and emotional warfare for a good purpose. Although my enemy was formidable, I still won significant battles along the way that made our overall experience of LBD less damaging to both of our lives. There was victory and empowerment in winning those battles. I was preserving personhood for John and for myself by personifying Lewy.

It also worked beautifully with our grandsons, who were young when John had LBD. When the oldest, Michael, was about five years old, he was chatting happily in the backseat of our car as we drove along a lovely country road. All of a sudden, John barked at Michael harshly and told him he needed to be quiet. Before I had time to think it through, I spoke up and said, “Michael, that is just that mean old Lewy talking to you right now. Your Pops would never talk to you like that. Pops loves you, Michael.” Fortunately, John responded with silence. This caused me to begin using the “mean old Lewy” explanation with all the grandsons from that point on. I would tell them if they entered the room and Pops looked angry or spoke harshly to just leave the room right away. “That was Lewy, not your Pops. Wait a bit and go back to see Pops later.” The boys all seemed to accept that explanation as making complete sense to them. It likely worked because it matched what happened to them. They would reenter the room later and find their sweet Pops happy to see them as usual.. Sometimes I would speak to John and remind him to be especially kind to the boys. We also tried to have only one child at a time in the room with John if he was agitated or tired.

Another example shows how personifying Lewy played out with John. One day John began to have trouble speaking. He babbled a kind of gibberish. I touched his head tenderly and said, “Sweetheart, I can see that you know exactly what you want to say. Right now Lewy is messing with the connection between your thoughts and your ability to speak. Close your eyes, take a nap, and when you wake up you will be able to say whatever you want.” John closed his eyes immediately and went to sleep. When he awakened, he was able to speak normally. That level of trust had been established over a period of years along with the habit of blaming Lewy when a bad symptom presented itself. John had learned that Lewy came and went, and he trusted me to point that out for him. It seemed to keep his anxiety lower.

Personifying Lewy gave the boys more of a sense of empowerment. They clearly stopped taking it personally when John’s disease made him appear mean to them. It also gave them someone to blame for what was happening. It made everything make more sense somehow for all of us while it protected John from the blame he did not deserve. Personifying Lewy enabled me to do a better job of separating the disease from my husband, thereby preserving his personhood while protecting my own heart from being bruised by some of Lewy’s antics.

These first steps lay a foundation for a more gentle journey. Each of them helps you to stay ahead of the disease so you have more control over your daily life. Each of them will make you a better caregiver.


**A draft form of this lesson first appeared in a free online booklet, “Prepare to Be an Engaged LBD Care Partner,” by Rosemary Dawson, Jeff Maruna, and Pat Snyder. The booklet may be found here:

**A briefer form was published by in Resources section.


5 Things Family Caregivers Need to Know About Family Leave (NextAvenue)

This week is the 25th anniversary of the Family and Medical Leave Act (FMLA). This law allows employees up to 12 weeks of unpaid time off from work to care for family or their own health without losing their job. Of course, many families can’t manage so long without pay. Currently, there is talk of an expansion of the law to include paid leave.

Here is an article from NextAvenue ( explaining more about what FMLA currently covers and where it may be headed.



“5 Things Family Caregivers Need to Know About Family Leave”
February 7, 2018
Diane Harris

This week marks the 25th anniversary of the Family and Medical Leave Act (FMLA), which allows employees to take up to 12 weeks of unpaid time off from work to care for a new child or sick relative or to manage their own serious medical condition without fear of losing their job. The biggest cause for celebration, however, isn’t for what the law has accomplished over the past quarter century, but rather what may come next.

“Momentum is clearly growing among policymakers and employers for an expansion of the law that will include paid leave,” says Lynn Friss Feinberg, a senior strategic policy adviser for the AARP Public Policy Institute. “It’s increasingly seen as a bipartisan issue.”
What Could Help America’s Family Caregivers

That would be especially good news for the nation’s 24 million family caregivers who hold down a job while looking after an ailing family member. Employees who take a leave after having a baby or to deal with their own health issues may be able to partially fund that time off with state- or employer- provided short-term disability insurance, but that option isn’t available when you’re caring for someone else.

Says Feinberg, “Most family caregivers can’t afford to take a leave.”

That is, if they’re even eligible for time off under the FMLA to begin with. Businesses with fewer than 50 employees are exempt and recent hires and part-time workers are excluded. The upshot: Only about 60 percent of the workforce qualifies.
5 Things Family Caregivers Should Know About Family Leave

If you need time off to care for your spouse or an older relative, here are five important things to know about what the law can and can’t do for you — and the changes that may lie ahead:

1. FMLA isn’t just for new parents. “People often assume the law only applies to moms and babies, but the most common use is to deal with your own health issue,” says Vicki Shabo, vice president for workplace policies and strategies at the National Partnership for Women & Families.

In fact, more than half of the employees who took a leave over a 12-month period used the time to manage their own illness, according to a Department of Labor survey. The second most common reason was to care for a new child (cited by 21 percent); 18 percent needed time off to help a parent, spouse or child with health problems.

Yet as the public discussion over paid leave heats up, parental leave and family leave are still often conflated. In his State of the Union address, for instance, President Donald Trump called on Congress and the country to “support working families by supporting paid family leave.” But the proposal he included in his budget last year was limited to paid time off for new parents.

Says Shabo: “It’s important to look beyond the language at the comprehensiveness of a proposal or policy to make sure it includes all of the FMLA reasons.” More about such proposals shortly.

2. You can’t use the federal law to care for your father-in-law or mother-in-law. You typically can’t get time off under the FMLA to help your brother, sister, grandmother, grandfather or adult child either. That’s because the law narrowly defines “family” as a spouse, parent or child under 18.

Exceptions are made for a relative or other person who helped raise you as a minor by providing substantial day-to-day or financial support, and for a grown child who is severely disabled.

All told, more than one-third of family caregivers provide help for an adult family member who falls outside of the FMLA’s parameters, according to a National Alliance for Caregiving and AARP report.

3. You may get more family-leave help from your state or city than from the federal government. States have been the pioneers in pushing family leave laws beyond the boundaries set by the FMLA.

About a quarter of states have protections for unpaid leave that go beyond the FMLA, providing coverage for people who work for small businesses, extending time off beyond 12 weeks or defining family more broadly to include grandparents, in-laws and other relatives. (A summary of the state rules is in this National Partnership report.)

Meanwhile, paid sick days are now available for family caregiving duties in nine states and 35 localities. These help with some common caregiving tasks that may not be covered under the family leave law, such as taking Dad to a doctor’s appointment or getting Aunt Emily settled in at a new care facility. (What’s available in your area? Look here.)

Plus, a handful of states now have paid family leave policies, including California, New Jersey, Rhode Island and New York. Bills passed last year by Washington and the District of Columbia are scheduled to take effect in 2019 and 2020.

The California law, as an example, replaces 60 to 70 percent of wages for up to six weeks; the New York law now offers up to eight weeks with 50 percent of pay and will expand to 12 weeks at 67 percent of pay when it’s fully implemented in 2021. (Details on the state programs are here.)

Look for more states to hop on the bandwagon. Shabo says Massachusetts is likely to pass a paid family leave law this year, and campaigns are heating up in Colorado, New Hampshire, Oregon and Vermont.

4. Employers are lagging on paid leave for family caregivers. More than 100 leading and brand-name companies — such as Deloitte, Facebook, Microsoft and Nike — have added or expanded paid leave policies in the past three years, but still only 13 percent of private-sector employees are covered, the Bureau of Labor Statistics reports.

Worse yet for anyone caring for parent or spouse with health problems: Most of the new corporate programs, despite being called “family leave,” only cover new parents; just 20 percent including provisions for family caregivers. Those that do often fall woefully short of need, with many capping replacement pay at two weeks or less — a mere three days in the case of Capital One and four days for FMC, according to a National Partnership report.

Still, AARP’s Feinberg is hopeful that demographics and personal experience will motivate more companies to cover family caregivers in the future.

“By 2024, nearly one in four people in the labor force will be age 55 and older, including midlife and older women who are more likely to take on a caregiving role,” she notes. “More people in C-suites are being personally affected by caregiving challenges too, and that will help drive awareness of the need for paid leave policies across the life span of working families.”

5. More federal help may be coming (emphasis on may). As part of the new tax law, starting in 2018, employers that provide paid family and medical leave to workers who earn less than $72,000 a year are now eligible for a tax credit of 12.5 to 25 percent of the cost of each hour of paid leave, depending on how much of the worker’s earnings the benefit replaces. Employers must compensate workers for at least 50 percent of their regular earnings.

Don’t cheer yet.

Critics point out that the leave can be as little as two weeks, employers are only required to cover one or more of the purposes outlined in the FMLA, the tax credit is scheduled to end in two years and it only covers caring for the family members in the original FMLA law (in other words, no credit for assisting an in-law, a grandparent, a brother, a sister or an adult child).

Also troubling: “Economists across the ideological spectrum agree that the provision is unlikely to incentivize new policies to be put in place but rather will just be a subsidy for employers with existing policies,” says Shabo. That echoes the conclusion of 14 experts in a joint report on paid family leave from the American Enterprise Institute and the Brookings Institution last year.

Caregiving experts are more enthusiastic, however, about the growing number of supporters for the Family and Medical Insurance Leave (FAMILY) Act, introduced five years ago by Sen. Kirsten Gillibrand (D.-N.Y.) and Rep. Rosa DeLauro (D.-Conn.) and now co-sponsored by an additional 28 senators and 146 representatives (but no Republicans).

The bill would allow workers at any size employer to get up to 66 percent of their pay for as many as 12 weeks of leave to manage serious family or medical issues for care of a child, parent, spouse or domestic partner. The program would be funded through small employer and employee contributions of 0.2 percent of wages each, up to a cap of $128,400 in wages in 2018 (about $1.50 a week for a typical worker), with self-employed people paying both parts, as they do now with contributions to Social Security.

Among Republicans, Sen. Marco Rubio (R.-Fla.) is working with Ivanka Trump on a proposal that would let workers who want to take parental leave tap into their Social Security benefits to fund it, then delay getting payouts at retirement age by the time off taken. For example, according to Politico, someone who’d begin receiving full Social Security benefits at 67 but wants to take six weeks of paid leave wouldn’t start claiming Social Security until six weeks after turning 67.

Critics point out this poses particular risk for women, who are more likely than men to take time out of the workforce for caregiving, more reliant on Social Security for income in retirement and more apt to struggle financially as they age.

No one is placing bets yet on which plan, if any, will actually pass.

Advocates like Shabo worry that the idea that something is better than nothing could lead to a program that leaves out large groups of family caregivers, sets length and wage replacement limits too low or doesn’t provide for an adequate and sustainable method of funding.

“This is a huge moment of opportunity,” she says. “But the stakes for getting a policy right, one that is reflective of the needs of the entire U.S. workforce and their families, have never been higher.”

“Healing from Bad Luck Fatigue” – Webinar Notes

Last week, Denise Brown of hosted a webinar titled “Healing from Bad Luck Fatigue.”

The title is a little strange (I think). The premise is that caregivers sometimes feel as if they have bad luck as they are constantly coping with problems. Denise Brown provides some tips on dealing with the associated fatigue.

The webinar recording can be found here:

Brain Support Network volunteer Adrian Quintero listened to the webinar and shared notes.


Notes by Adrian Quintero, Brain Support Network volunteer

“Healing from Bad Luck Fatigue” Webinar
January 31, 2018



  • The advice of taking a break may feel counter-intuitive. We can believe that if we are not actively trying to find solutions to the problems, we are not taking the problems seriously enough. 
  • It is possible to overwork a problem, over work your brain. With too much stress, we can’t think clearly and find solutions we need. One suggestion is to tell yourself “I’m going to go to bed, when I wake up I”ll know just what to do.” This allows a way to both take a break, and also be working on the problem too, subconsciously.
  • It can be easy to obsess about the past, what has or hasn’t happened. The suggestion is to “face forward”, and that the solution is ahead of us. 
  • Taking a break could mean a day to not think about it, or even just for a moment. 
  • Important to remember taking a break is not giving up responsibility, but “giving solutions a chance to find you.”


  • Moving from resentment and bitterness into possibilities and opportunities
  • Being present in what is can help with figuring out what to do next
  • Rather than beating ourselves up over something we can’t change or control
  • To remember mistakes are okay, we are all human
  • Letting go of emotions that can drain our energy, such as past hurts
  • Letting go of the idea we alone must fix the situation we are facing


  • Releasing feelings such as irritation, anger, frustration. Remembering that bad luck has happened in our lives, and we have every right to be mad about it
  • Releasing in a physical way- walk, jumping up and down, any thing that feels good. Physical activity, even simple, can help let it out.
  • There is much research that says exercise can really help our mental health
  • Writing, venting to friend or support group, helps bad luck not take a hold so tightly
  • “Once you let it out, you can let in” Releasing what’s not wanted or needed allows space for answers, support, resources, new insight into our situation and problems we are facing
  • We want to let in the idea that others can help, even if this may be others we don’t yet know


  • We alone, as individuals, don’t have to fix everything 
  • Our faith (if that is part of our lives, support, ideas
  • Often times shame (maybe of how we are handling a tough situation), can keep support away from us
  • Remembering we deserve support from people who understand our situation and struggle


  • Curiosity is a great skill to have in life. It can be a way we stay well, though we often don’t think of curiosity this way
  • When we are open and curious in our lives, we remain out of judgement of ourselves, situation, and others
  • Suggestion to think and ask ourselves “how will this work out?” 
  • We could start the morning with question such as “who will help me today?” or “what will make me smile today?” 
  • When ask a question, our minds search for answers. Asking a question that can lead to an answer that will help. 
  • Think about questions want answers for. We can start the day with question


  • May sound goofy! It can be thought of as a practice in accepting abundance
  • When we are deep in bad luck, we are fighting scarcity, and feeling there is not enough. Pennies can be a simple way to think about abundance differently
  • Working with the idea of not to walk by and dismiss abundance, but take it and receive it


  • We might feel like “I am the only one with the worst luck in the world” This can feel very true, but doesn’t serve us well to see life this way
  • Can be helpful to understand it’s not just any one of us. We have bad luck right now, and we are not the only one. This idea can be isolating and make it harder to see an end to bad luck. Our shared experience with others, and reminders the bad luck is not personal, even though it can feel that way
  • Looking to nature for inspiration: There are 4 seasons, winter doesn’t stay for 12 months, we move through changes just like nature does. Bad luck might be the winter of your year, you will move into spring (that could be part of the curiosity questions “When is my spring coming? When will days be longer and heart be lighter?”)


  • Giving thanks to other things we may see (nature, etc.) even during times of bad luck. Perhaps feeling grateful for opportunities to learn from nature
  • Looking for opportunities in our day to give thanks. Maybe in ordinary parts of the day we normally overlook. (gas in car, food in fridge, etc)
  • Could create rituals around gratitude during an activity we love. She gives an example of swimming laps, touching the wall, thinking “thank you,” each time. Could be giving thanks in the morning for a fresh start, new chance
  • This can be a calming way to manage the chaos of bad luck


  • This might seem odd when you are barely able to help yourself, overwhelmed caring for another, and overtaken by things not going right. One of best ways we can help ourselves is to help another. How can we help without it feeling like a burden? Could be a simple thing- smiling at someone, opening a door, something small and simple, that doesn’t cost you anything
  • This can serves as a way to see oneself in a new light. Sometimes caregiving can feel like we aren’t making a difference, the declines are winning, and helping other in a tangible way where the difference can be seen can be inspiring.


  • During times of bad luck it can feel as if there is no good magic in the world, and no possibility of miracles
  • Magic could be defined by faith, such as a bigger purpose, or higher power, someone/ thing that we can’t see but touches our lives. In this way, magic is always there, even during bad luck times
  • Magic could be that the sun rises the next day, and we can too
  • Think about what you’ve achieved. Not the traditional achievements we might think of, but in standing up and supporting another during a difficult time, you bring magic to that, you make that happen.
  • You’ve been magic or a miracle for others in the caregiving work that you do

“Life After the Diagnosis: Expert Advice on Living Well with Serious Illness” – podcast

Last summer, Steve Pantilat, MD, was interviewed by GeriPal, a blog ( that focuses on geriatric medicine. Dr. Pantilat is a palliative care physician at UCSF. The interview occurred shortly after his book was published — “Life After the Diagnosis: Expert Advice on Living Well with Serious Illness for Patients and Caregivers.”

We posted a link to the podcast of the interview on Brain Support Network’s Facebook page at the time, but I just got around today to listening to the podcast. Here’s are some highlights for me:

* “There’s this idea that somehow if we talk about what’s really happening, like how serious your prognosis is, or the fact that you have in fact a life limiting illness, that somehow that’s gonna take away hope and so, let’s not talk about it, we need to leave people with hope. But I worry that what that leaves people with is false hope. And that fundamentally, false hope is no hope. And if we talk about hope, we can really promote it and we can encourage it and to recognize that people have hope, even when we take care of people who are days away from the end of life, who are actively dying. They still have hope for things that are meaningful to them. And by talking about it, we can really encourage people to have hope, and to build on and to recognize, yeah, there’s hope for cure, sure. But there’s hope for a lot of other things that can coexist within the hope for cure, or alongside that hope, and we can encourage that.”

* “[We] talk about a good death but I don’t see death as good. I’ve seen it only as being sad and filled with grief and loss, and nothing we do seems to make it good. And the tragedy … I recently took care of a forty-two-year-old woman with an eight-year-old child in the hospital. She died in the hospital. People would say, ‘Oh, that’s a bad death,’ but you know, what was bad is that she died. And if she had died at home, it wouldn’t change the tragedy and the sadness and the grief and loss associated with her death.”

* The interviewer mentioned a story in the book about Sergei, an 80-year-old whose wife has dementia. Sergei hopes that the wife will get better. The interviewer asked Dr. Pantilat if this is false hope. “That I would say is false hope, we know that dementia does not reverse. …I realize that there was nothing I could say that would fundamentally change his hope in his wife getting better and I realize my role at that point was just to support him in that hope. … But, you know, there’s a time to push and there’s a time to accept and support and that was a time to accept and support.”

* “Realistic prognosis focuses hope. They give patients reliable and realistic information they can use to make decisions.”

* “[We] often give people this false choice, we say, ‘Do you want quantity of life or quality of life?’ And it’s somehow, if you want quantity of life, you have to accept all the possible interventions to attack your illness or to treat your illness. Every chemotherapy regimen, every procedure, and so on. And what we know now is that, in fact, there comes a time when some of those things not only don’t help you live longer but may actually ruin your quality of life. Chemotherapy in the last six months of life, for example. And that somehow if you want quality of life, it means you’re not gonna live quite as long. And what we know from Palliative Care, from the research, from the literature in our field, is that you can get both. And Palliative Care helps you live better and at least as long, maybe longer, but certainly no shorter, and you can live well and long. And part of my book, the point is to really get people to engage with and ask for and demand Palliative Care to live well and to live long.”

* He talks about using a word like “progress.” “Like progressive illness, your illness has progressed. ‘Oh, that’s great!’ No, that’s terrible. So I now think about this when I talk with my patients and I say, ‘Your heart failure is worse,’ rather than saying, your heart failure has progressed…”

* “Dignity is one of those very loaded words that’s in fact very personal. … And so we often use this word as a code for certain things. Like, respect your dignity by withdrawing interventions and what we should … If we’re gonna use that word, we [physicians] really need to embed it in what the patient and family think of as dignity and their interpretation of dignity and try to support that idea, not our own.”

* “If despite CPR, you die, your final moments will have been spent at the center of a tornado and while a team works on your body, your family will be watching the horror or be banished from the room. In either case, they won’t be with you, at your side, holding your hand.”

* “I think there’s a way in which people with serious illness think, ‘Why not? Why not just try it?’ And the evidence really suggests that when your illness is very advanced, to the point that you die of it, CPR isn’t really gonna help you. It’s not gonna help you at all and you’re gonna end up sicker. I think there’s a way that people think it’s like reset the computer. … But we all know that even if you survive CPR, you’re gonna be worse off than you were and there are implications, maybe not for you, I think this idea that somehow it’s suffering for the patient, I think is not right. We do CPR generally on people who have died. And so I don’t see that there’s a lot of added suffering to the person who’s died but there is this impact on their loved ones who might be at the bedside. And we have to remember what their experience is as well.”

* “[We] have to be careful to remember that all we’re saying is, ‘When you die, when your heart stops and you stop breathing, we will not try to revive you because it won’t work. We’ll let you die peacefully.’ But that has no bearing on all the other care that we will continue to provide. And we have to emphasize what we’ll continue in the meantime and all the care we will provide to make sure people are comfortable and well cared for so that we don’t see this decision about CPR at the very end as somehow implicating something more than it is.”

You can read the full transcript and listen to the podcast here:

Dr. Pantilat was also interviewed at the Commonwealth Club of California last summer. A recording of that interview can be found here:

And he was interviewed on KQED’s Forum show last summer. That recording is here:

Happy listening!



“Caring for the Caregiver: How to Prevent Burnout”

In mid-January 2018, CBC, a broadcasting network in Canada, aired a documentary called “The Caregivers’ Club.”  It is the club that no one wants to join.  This documentary is only viewable in Canada.  (I couldn’t find it on YouTube.)  The documentary follows three families coping with dementia.  I suspect that most of the documentary applies to all caregiving situations, not just those coping with dementia.

There are several good articles on the CBC’s website about caregiving.  These articles accompany the documentary.  One of the articles is on “Caring for the Caregiver: How to Prevent Burnout.”  Though the article is focused on dementia caregiving, most of it applies to all caregivers.

The author, an occupational therapist, shares these warning signs of caregiver burnout:

• You are not enjoying social activities and friends
• You find it a chore to leave the house
• You are more irritable and have mood changes
• It is difficult to concentrate and get things done
• You are having trouble sleeping
• Your weight may be affected (up or down)
• You feel anxious or depressed
• You have physical complaints such as headaches, pains
• You get sick more often, with both minor and major ailments

Most of the article is copied below.


Caring for the Caregiver: How to Prevent Burnout
Published about Sunday, January 14, 2018
by Nira Rittenberg

As Canada’s population ages, the number of caregivers who are involved in dementia care is on the rise.  The latest statistics from the Alzheimer Society show that there are 25,000 new cases of dementia every year and by 2031, the number of cases will increase 66% from today.

Individuals with dementia often require quite a lot of care, and it’s usually the family that provides it. CBC documentary, The Caregivers’ Club profiles three Ontario families as they struggle to care for their loved ones.

Caregivers for People with Dementia Burnout More Often
Caregiving is challenging, and people with dementia often require long care hours. This type of caregiving is associated with higher levels of burnout than non-dementia caregiving.  Research has shown that it is much more difficult to do than caring for someone with a physical disability.

For almost all carers there is the balancing act of family life, careers and other relationships. Some caregiver demographics, such as homosexual, Indigenous and caregivers of individuals with early onset dementia, may experience additional stressors in their roles. Each of these caregiver groups has challenges that are specific to their situation.

Early onset dementia caregivers are often in the phase of life where they are raising younger children and carry more of a financial burden. They may have not fully developed their caregiving skills and feel more unprepared for the task. Homosexual caregivers often have to deal with prejudice and lack of sensitivity in the healthcare system; while Indigenous populations may not have access to mental health services.

Stress Warning Signs
The stresses of caregiving can be insidious and often trace back to the caregiver neglecting their own mental and physical health. These triggers may happen slowly and make burnout hard to identify.

Some warning signs include:

•         You are not enjoying social activities and friends
•         You find it a chore to leave the house
•         You are more irritable and have mood changes
•         It is difficult to concentrate and get things done
•         You are having trouble sleeping
•         Your weight may be affected (up or down)
•         You feel anxious or depressed
•         You have physical complaints such as headaches, pains
•         You get sick more often, with both minor and major ailments

Caregiving Will Not Change the Course of the Dementia
Some caregivers feel the self-imposed responsibility that their efforts can somehow change the course of the illness by keeping the individual with dementia “happy and healthy.”  Many caregivers report that they end up feeling upset with the person they are caring for. Though they are aware that feeling this way is not rational, it makes them feel worse.

Many caregivers saddle themselves with unrealistic expectations of what they can handle on a daily or practical level. Money, resources and ability to manage may not be adequate and can make a caregiver feel impotent.  The lack of ability to control this situation combined with a complex health care system can be difficult and frustrating.

Fortunately, not all symptoms occur for every caregiver, and there is no timeline on when they will feel that things are not working.

How to Access Support for Caregivers
The good news is research has shown that support can make things easier for caregivers.

Interventions can come in different forms like receiving help to get things done and assistance with housework, bathing or other tasks.

The caregiver also needs support to deal with the stress of watching someone they care about deteriorate to help them cope with the emotional struggles that are part of the journey.

These supports can come from both professionals as well as peer caregivers. Every situation is different and supports should be built around need. There are a variety of services and resources that can help. The key is to find one that suits your family.

Reach out to your doctor or your local health agency. Find someone who will help your family to find what it needs to get the care, education and support to be both effective and healthy.

Nira Rittenberg is an occupational therapist who specializes in geriatrics and dementia care at Baycrest Health Sciences Center and in private practice. She is the co-author of Dementia: A Caregiver’s Guide.

“Life Lessons From Dad” (Wall Street Journal)

This article is about a son and his wife caring for the son’s parents in the son’s home.  The parents were in their 80s.  The father had a diagnosis of dementia.  The author says:  “Caring for an ailing parent is a life-changing event. Beyond the sadness and suffering, the experience can teach caregiving children a lot about toughness, perseverance and especially love.”

On the Wall Street Journal website (, there is a 4-minute video interview of the author.  The video can be watched at no charge, after an advertisement.

Here’s a link to the full article about “life lessons from dad”:  (the full article is viewable only if you make a payment to the WSJ)

Life Lessons From Dad — Caring for an ailing parent is a life-changing event; beyond the sadness and suffering, the experience can teach us a lot about toughness, perseverance and, especially, love
By Dave Shiflett
28 June 2014
The Wall Street Journal


A revolution in health care is coming (The Economist)

This interesting lead article in the Economist magazine ( is about how we will all become our own doctors, leading a health care revolution.

Here’s an excerpt:

Better flow of medical data “is likely to bear fruit in several ways. One is better diagnosis. … A second benefit lies in the management of complex diseases. … Patients can also improve the efficiency of their care. … A final benefit of putting patients in charge stems from the generation and aggregation of their data.”

And a full link to the article: