“The Unsung Longevity Factor of Social Connection” – webinar notes

I first heard about the negative affects on health of social isolation at an atypical parkinsonism caregiver conference we organized several years ago. People who are socially isolated have mortality rates similar to smokers and twice the mortality rates of obesity. The advice given by the conference speaker was that we should do all that we can to address isolation — whether we be caregivers or those with a neurological disorder. This is especially important because caregivers tend to become isolated and those with atypical parkinsonism disorders tend to become isolated.

Recently, I came across an early 2019 talk on a similar topic — “The Unsung Longevity Factor of Social Connection.” The speaker was Amy Yotopoulos, who was then with the Stanford Center on Longevity. The focus was on the physical and mental health affects of loneliness and social isolation. On the flip side, people who are socially connected are happier, healthier and live longer.

Ms. Yotopoulos addresses how we can make more health-enhancing social connections. Here’s an excerpt from her talk about what three “action steps” can create more connection in our lives:

#1 Prioritize social engagements in your own life and make it a healthy daily habit. (As important as physical exercise. Examples – text a friend; take in neighbor’s garbage.)

#2 Be intentional and make it personal for you. Don’t put it on autopilot or wait for it to happen “naturally.”

#3 EASE back in to these 4 steps to end loneliness: (from “Loneliness” book by John Cacioppo and William Patrick)

— Extend yourself: do it safely, a little at a time

— Action plan: recognize that this is hard; ask people about themselves; get others talking about their interests. You don’t need to hit it off with everyone.
Commit to having 6-8 conversations with someone. See past your differences. Don’t worry about rejection.

— Seek (or select) collectives: find groups with similar interests, activities, and values. That makes it easier to connect.

— Expect the best: having a positive outlook about the outcome will make it easier to act.

Granted these suggestions were pre-covid but I think nearly all of the suggestions are applicable to our lives during the pandemic. So much can be accomplished over the web, over the phone, or in a physically-distanced setting.

The recording of the talk is available here.

My notes from the talk follow.

Be sure to check out the questions and answers at the bottom. The speaker answered this question — “How to help older, retired men who have few friends, not interested in volunteering, and not interested in making new friends?”

Best,
Robin
————————————–

“The Unsung Longevity Factor of Social Connection”
Webinar sponsored by Stanford Health Improvement Program
Speaker: Amy Yotopoulos, Stanford Center on Longevity
January(?) 2019

Notes by Robin Riddle, Brain Support Network

We can keep people happier, emotionally-engaged, and mentally sharp through purposeful activities and meaningful interactions with others.

We are inherently social beings. We need each other to survive. We all want to be connected and to feel connected.

This talk will address:
* Risks of social isolation
* Benefits of social connection
* How to improve your relationships with social connection

Social isolation is deadly. Feeling socially isolated is associated with:
* 29% increased risk of coronary artery disease
* 32% increased risk of stroke
* 64% increased risk of developing dementia
* 26% increased risk of death
* and increased risk for high blood pressure and addiction

Terms:
* Social isolation – objective
* Loneliness – subjective; self-reported; can be around others and still feel lonely

People who are isolated or disconnected have a mortality rate that is three times as high as those with more and deeper social ties. Twice the mortality rate as those who are obese. Mortality rate is the same as those who are smokers (smoking 15 cigarettes or more a day).

Look at all the things our society (public health work) has done for smokers and the obese but how little we’ve done for those who are isolated.

Like obesity, this is stigmatized. People feel ashamed to admit feeling lonely or being isolated.

This is an issue for all ages, not just older adults. The prevalence of loneliness is highest among adult freshmen.

“During my years caring for patients, the most common pathology I saw was not heart disease or diabetes; it was loneliness.” — Dr. Vivek Murthy (surgeon general, 2014-2017)

In the UK, there is a minister of loneliness. They recognize long-term health effects.

Why are we becoming more disconnected? Decrease in meaningful relationships and purposeful activities.

Research showing we are more alone in middle age. More of us are living alone, especially at younger ages.

50% of US adults are single. Marriage rates (and divorce rates) are declining.

Up to 40% of Americans feel lonely, feel isolated from others, lack companionship, and feel their relationships aren’t meaningful. In this group, 54% feels that no one knows them well.

“Sightlines Project:” Only half of Americans are doing all they can to stay socially engaged.

Baby boomers are least socially-engaged of all the adults in the US.

Social networks are getting smaller. When asked how many confidantes they have, “zero” is the most common answer. This is one in four Americans.

Story of Lyft driver who is a caregiver to his father. The driver has no one to care for him. The driver has diabetes.

One consequence of our increased longevity and decrease in social connection is that an estimated 22% of hospitalized older adults are “unbefriended.” aka, kinless older adults or elder orphans. No family or friends to help with medical decisions or visit them.

8 million people in the US age 50+ have no close kin. Women are more likely to be kin-less than men.

Americans increasingly need to rely on friends. We need to cultivate these relationships. Even if we are married or have children, they may not be able to assist us later on. Friends are important.

We are finally becoming aware of the problem. Naming the problem is a first step. Stigma (of admitting loneliness) plays a big role in not getting help.

Stanford-Harvard-AARP study: the lack of social connection among older adults is costing Medicare $6.7 billion/year.

What is social engagement? Quantity – Number of social relationships we have and the frequency of interaction. Quality – Number of people on whom we can depend and can depend on us. Depth of relationships.

Social engagement leads to better health, higher income, employment, and purpose/meaning in life.

10 Domains of Well-being: (Stanford research)
* Social connectedness – most important domain.
* Then, lifestyle behaviors.
* Then, physical health.
* Next is stress and resilience.
* Next is emotional/mental health.
* Others: purpose/meaning, sense of self, finance, spirituality/religiosity, creativity.

Quantity vs. quality of relationships.

Books: “Bowling Alone” and “Alone Together” (affect of technology)

Depth of relationships:
* meaningful conversation
* sense of support
* can you call someone at 4am?
* can you borrow $400?

Socio-emotional selectivity theory (from Laura Carstensen, Stanford): as a person ages, their social goals shift from being knowledge-related to being emotion-related.

Emotional well-being increases with age. We focus more on the positive aspects of our lives, as we age. A large body of research shows that emotional experience improves with age. People are slower to show anger and more prone to see silver linings. They solve emotionally charged conflicts more effectively and are more likely to forgive and forget.

U-shaped curve of happiness. International phenomenon. Also inter-species! We are least happy in mid-life (40s and early 50s).

Book – “The Happiness Curve: why life gets better after 50,” by Jonathan Rauch

“Baby boomers are isolating themselves as they age,” Laura Carstensen, May 12, 2016.

Older adults may downplay the affect of retirement on their social lives and well-being. Retirement can also be a hit to one’s identity.

Boomers might be empty-nesters, they may have millenials living at home, or they may be caring for older parents.

Stanford survey of those who are primary caregivers of elderly relatives —

Percent ages 55-65 who interact with family:
General US population: 64%
Family Caregivers: 82%

Percent ages 55-64 who have family support:
General US population: 69%
Family caregivers: 54%

So family caregivers have more interaction with family but feel less supported by family. Caregivers may have one-directional relationship with the elderly person they are caring for.

Caregivers are more likely to feel lonely and need support from family and friends.

“Dunbar’s Circles”:
3-5 – very close friends and kin; needed for optimal well-being
20 – friends and broader family
50 – acquaintances
150 – familiars (might be neighbors, barista who knows your order, someone you see and chat with at dog park daily)

When inner circle dips below 2 or 3, we feel lonely. This is your body’s way of telling you that you are lacking something. Like hunger or thirst.

You can diversify by:
* type of connection (like the circles)
* age

We miss out by not having friends of all ages (20 years older, 20 years younger).

How do we get inter-generational contact?

Meaningful relationships:
* Friend social support
* Meaningful interactions with spouse/partner
* Family social support
* Frequent friend interactions
* Frequent family interactions

Group involvement:
* Workforce participation
* Participation in community or religious activities
* Volunteer
* Converse with neighbor

Sightlines Project researched these 9 actions (above). Americans are not as socially connected as they were 20 years ago.

We can become more connected by focusing on friendships. This takes time:
* 50 hours before we consider someone a casual friend.
* 90 hours before we consider someone a real friend.
* 200 hours before we consider someone a close friend.

We need to develop supportive friends, which means being willing to be vulnerable as this creates connection and intimacy.

We need to be better at being a good listener, asking good questions, and sharing.

Maybe have a goal of one friend from each decade.

7 in 10 say they can rely on family members when facing a serious problem.

Family more likely to help in time of need, while friends are more likely to help you enjoy life. We need both. “Family” can mean “family we choose.”

7 in 10 married Americans say they share meaningful conversations with their partner at least once per week. Husbands report more meaningful conversations than wives.

There’s an important role for purposeful activities to better health.

Relationships with neighbors are considered an important aspect of social integration. Feeling like you belong. Creates a sense of community.

Only 1 in 3 say they interact with their neighbors on a weekly basis. This has decreased over time.

NextDoor – trying to address this.

Only 1 in 4 Americans volunteers. Similar percentage over the last two decades. This is not a social norm in our culture. Most who don’t volunteer say that no one has asked them to, and they don’t know of opportunities for this.

VolunteerMatch – trying to address this.

Who volunteers?
* Women more than men.
* 40% of college graduates volunteer vs. 9% of those with no high school degree.
* 35-44 year olds – most likely to volunteer, probably at kids’ schools and with kids’ sports. This is a cultural norm for this age group.

Maybe MDs should give a prescription “to volunteer.” Like a flu shot.

Employees think they will miss their paycheck most when they retire. But what do actual retirees miss the most? Their social connections.

Telecommuting and open office plans contribute to feelings of social isolation.

Standing desks (in an open office plan), which allows for more eye contact, reduces feelings of social isolation.

All age groups have declined participating in community and religious activities. Highest drop among those age 55 and older.

Loneliness is contagious and so is kindness (pro-social behavior). One person can infect many others.

“Social fitness training” – doing five acts of social kindness a day. Even smiling at someone. Both givers and receivers were happier. Benefits lasted for months. People began to “pay it forward.”

Meaningful relationships between old and young create a “secret sauce” that can benefit both generations.

Older adults are the only natural resource that is growing.

Our society is age-segregated.

Conflicting research about the effect of social technology on well-being (loneliness, anxiety, depression). Social media and the internet can be both a boon and a problem. Perhaps it’s different for different age groups. Perhaps asking question of “doing what” is more important than “how long.”

We believe that social technology can be beneficial when it enables us to connect with loved ones but can be a detriment when it creates more social isolation or derision.

Even one text can create a connection.

Teens say social media helps strength friendships and provide emotional support, but can also lead to drama and feeling pressure to post certain types of content. (Pew Research, 2018) There are trade-offs.

This is a natural human instinct to build social connections.

Action steps to creating more connection in our lives:

#1 Prioritize social engagements in your own life and make it a healthy daily habit. (As important as physical exercise. Examples – text a friend; take in neighbor’s garbage.)

#2 Be intentional and make it personal for you. Don’t put it on autopilot or wait for it to happen “naturally.”

#3 EASE back in to these 4 steps to end loneliness: (from “Loneliness” book by John Cacioppo and William Patrick)

— Extend yourself: do it safely, a little at a time

— Action plan: recognize that this is hard; ask people about themselves; get others talking about their interests. You don’t need to hit it off with everyone.
Commit to having 6-8 conversations with someone. See past your differences. Don’t worry about rejection.

— Seek (or select) collectives: find groups with similar interests, activities, and values. That makes it easier to connect.

— Expect the best: having a positive outlook about the outcome will make it easier to act.

Take-home points:

1- Research shows that staying socially connected is an important way to increase long-term well-being and longevity.

2- Feeling lonely is a normal response to a vital need. It is your body’s way of telling you to connect more with others. Only you know what your personal RDA of connection is!

3- Remember the two main ways people can reduce social isolation and feelings of loneliness — cultivate meaningful relationships and participate in purposeful group activities.

Questions-and-answers:

Q: Does introvert or extrovert make a difference to how much connection is needed?
A: This is very personal. It could be that an introvert prefers meaningful one-on-one relationships over group activities. What brings you a feeling of joy and connection?

Q: How is loneliness contagious?
A: When people are feeling isolated and lonely, they aren’t reaching out to other people. Others avoid people feeling this way (as this is visible). Those others become more self-conscious about their social connections and therefore less likely to engage with others in the presence of those who are feeling isolated. (Based on “subtle” research by Nicholas Cristakis, now at Yale.)

Q: How to help older, retired men who have few friends, not interested in volunteering, and not interested in making new friends?
A: (Common question, especially from women.) Women have historically been the carriers of the social life in a heterosexual marriage. In our culture, men are not as able to be as vulnerable and open. I’m OK calling a friend, asking her to come over and talk if I’ve had a bad day. Whereas my husband would probably want to talk to me. This is why wives who are widows do much better than men who are widowers as they are not able to reach out themselves.

It’s difficult to be the spouse as we aren’t able to change our spouse’s behavior. Encouraging people to come into the house, if the husband is less able to leave the home. Invite people over.

Most people over the age of 70 have hearing loss. Most either don’t know it or do they know it but aren’t wearing their hearing aides. Untreated hearing loss has a substantial relationship with our social connections. On average, people wait 10 years before getting hearing aides. If people wait 10 years before getting hearing aides, they’ve already lost cognitive ability and brain power. Men are more likely to have hearing loss. So she recommends getting hearing checked and wear hearing aides. The aides are so much better.

Q: Is there research on a reduced ability to converse after prolonged social isolation for years and years?
A: Not that I’m aware of.

Our social interactions are learned behavior. If this is a muscle that gets un-used, it can go away. But it can come back. Start small.

Q: Is the Stanford Center on Longevity researching remote work spaces (like those recently opened in SF and SJ)?
A: We should be but I’m not aware that they are.

Q: I just moved and got divorced. How do I make new friends?
A: We assume that our friends are going to stay with us our whole lives (from high school on, or from college on). There are milestones (moving, starting a new job, divorce, widowhood) that happen throughout our lives where we need to be mindful about making new friends. Important to prioritize this. Go back to the EASE acronym. Start small in outer ring. Select one or two people in the middle space who might have potential; put more time into those people.

 

“Strategies for managing feelings of loss and grief” (Elaine Book, MSW)

This wonderful list of strategies was compiled by Elaine Book, social worker with the Pacific Parkinson’s Research Centre in Vancouver, BC, Canada, in July 2020. This list was shared at a recent WellMed Charitable Foundation teleconference that featured Ms. Book, in conversation with Parkinson’s caregivers. (There is little about this list that is Parkinson’s-specific. Nor is it specific to caregiving.)

Ms. Book’s list includes this quotation:

“Grief is like the ocean; it comes on waves ebbing and flowing. Sometimes the water is calm, and sometimes it is overwhelming. All we can do is learn to swim.” (Vicki Harrison)

There are many good ideas here. The last one resonated with me:

Reframe the loss as a change, not an end to a relationship or ability or role. Notice what has changed and focus on what remains. It can be seen as the closing of one chapter and the opening of another.

Happy reading,
Robin


Strategies for managing feelings of loss and grief
by Elaine Book, MSW, RSW
Pacific Parkinson’s Research Centre, Vancouver, BC, Canada
July 2020


Keep a journal

  • Writing out thoughts and feelings is an effective way to look at what is happening. Writing about your insights and reflecting on them can be empowering, can help you to find fresh opportunities and move in a new direction.  Sometimes writing about your losses can help you gain some emotional distance, make it more manageable and less frightening. Feeling the pain is healthier in the long run than denying the fears, anger, sadness, loneliness or resentment.
  • If you are new to journaling, start with writing down a daily highlight or gratitude. Or use prompts like “What makes me angry or sad or scared” or “What have I learned about myself” or “I found it funny and endearing when the PWP …” or “The unexpected gift I received”. [PWP = person with Parkinson’s]

Establish goals for yourself

  • Facing losses can leave you feeling out of control…try to counteract that feeling by setting goals for yourself like learning a new skill or taking a course or volunteering. Set up a plan that can work, one that is reasonable and rewarding.

Take action to stay healthy

  • Eat well, exercise, laugh every day, take breaks, sleep, maintain spiritual connections, remain intellectually stimulated, socially connected, use stress management and relaxation techniques like breathing.

Mindfulness

  • Grounding practices like yoga, meditation or even walks in nature help to pace yourself.
  • Apps for mindfulness practice – www.headspace.com, 10%happier, Breathe

Surround yourself with those who feed you

  • Be with people whose presence energize you and stay away from those who drain you.  Create a “psychological family “…. the people you turn to in times of crisis and celebration. This circle of support can go beyond family.  The people who are there for you in good times and bad are the ones who will be able to understand the losses of the caregiving experience. They can provide a healing hug. Also recognize the formal resources and support systems that are available to help you if your psychological family needs expanding.

Work together

With your loved one, address and come to terms with the losses and changes in function. A condition can bring you closer for having a shared experience.

Create something new

  • New plans, new connections based on how your life is now. Look for ways to connect with the PWP as he/she is today. Seek out joy in your relationship with the PWP.  [PWP = person with Parkinson’s]

Reflection

  • Think about past challenges in your life and how you navigated through them. Then use those experiences to remind yourself of your courage and strength and possibly use some of the same strategies again. What was helpful and what was not. Trust in yourself that you have the ability to meet the present challenge.

Reframe

  • Reframe the loss as a change, not an end to a relationship or ability or role. Notice what has changed and focus on what remains. It can be seen as the closing of one chapter and the opening of another.

Caring.com’s List of the 8 Best Medical Alert Systems

Caring.com occasionally evaluates the best medical alert systems.  This summer, they took a look at eight systems and said that they were the “best.”  Here’s an excerpt from their blog post:

At a Glance: The 8 Best Medical Alert Systems

Bay Alarm Medical – Best for Customer Service
MobileHelp – Best for Those Without a Landline
Medical Guardian – Best for Premium Features
LifeFone – Best Standalone Mobile App
Life Alert – Best for Industry Experience
Medical Care Alert – Best for EMT/EMD Certified Monitoring
QMedic – Best for Two-Way Communication
RescueTouch – Best for Two-Way Communication

Our family used the Philips Lifeline, which has fallen off the Caring.com list the last couple of years.

You can see the full blog post here:

www.caring.com/best-medical-alert-systems/

Robin

“Protecting Your Mental Health During COVID-19” – Notes from a caregiver chat

In June, the Parkinson’s Foundation (parkinson.org) hosted an event called “Caregiver Coffee Chat: Protecting Your Mental Health During COVID-19.”

This event featured Martha Anne Tudor, MEd, NCC, LAPC, who discusses how to protect your mental health while sheltering in place (or, slowly rejoining society). Her focus is on caregivers; however, the suggestions in this webinar apply to all of us. This chat contains one comment that is specific to Parkinson’s Disease.

Here’s an excerpt from the introductory remarks:

Most of the news right now isn’t good and there is a lot of uncertainty. We know about the human brain that we don’t do well with uncertainty. Our response is anxiety, worry, stress, and alarm. These initial reactions have been protective in history and have helped us survive. But with the current situation, with so much uncertainty, and no clear end in sight, it is easy to get stuck, and that can be damaging to our physical health, emotional health, immune systems and relationships. There are ways we can take control over how we respond to the things that are happening outside of our control. Uncertainty is always with us, and there are things we can do to not only survive but also come out more resilient.

The speaker encourages us to ask six questions of ourselves each day. She suggested that these are “quarantine-time” questions. However, these questions seem appropriate for every day, with or without a pandemic. The questions are: [Editor’s note: question #6 was re-worded.]

1. What am I grateful for today?
2. Who am I checking in on, or who am I connecting with today?
3. What expectations of normal am I letting go of today?
4. How am I getting outside today?
5. How am I moving my body today?
6. How am I cultivating, creating or inviting beauty into my life today?

The archived recording of this webinar can be found on the Parkinson’s Foundation’s YouTube channel here:  https://youtu.be/6TTVenqalqo

Friend of Brain Support Network, Adrian Quintero, took notes during the caregiver chat and has shared them.

Robin

————————————————————

“Caregiver Coffee Chat: Protecting Your Mental Health During COVID-19″
Hosted by Parkinson’s Foundation
June 4th, 2020
Notes by Adrian Quintero, Stanford Parkinson’s Community Outreach


Martha Anne Tudor, MEd, NCC, LAPC, is a Mental Health Counselor & Outreach Coordinator Movement and Memory Disorders Program, Department of Neurology, Augusta University/Medical College of Georgia.

Most of the news right now isn’t good and there is a lot of uncertainty. We know about the human brain that we don’t do well with uncertainty. Our response is anxiety, worry, stress, and alarm. These initial reactions have been protective in history and have helped us survive. But with the current situation, with so much uncertainty, and no clear end in sight, it is easy to get stuck, and that can be damaging to our physical health, emotional health, immune systems and relationships.

There are ways we can take control over how we respond to the things that are happening outside of our control. Uncertainty is always with us, and there are things we can do to not only survive but also come out more resilient.

Daily Questions

Martha Anne calls them “Quarantine Daily Questions,” although they are good anytime:

1. What am I grateful for today?

(Participants submit answers over chat. Many people said health of family, many others said nice weather)

We remember in times like this that our attitude and gratitude are not challenges, but they are choices we make.

There is research that shows an attitude of gratitude with improved immune systems. It can help to keep a journal and write 3 things at the end of the day that you’re thankful for.  These can be small things (a good movie, birds chirping, good cup of coffee). In a year you have 1,000 things you are thankful for. This can be a good resource when you are going through a challenging time. Many of these will probably still be true.

Some people have a habit of sharing over dinner with loved ones what went right that day. These types of things we really train ourselves, and the more we look for things to be grateful for, the more it becomes a habit to see it. We might have to be particularly proactive with this right now, as we are bombarded with stressful and scary information.

We need to remember there is good to help balance out the negativity. Another way we can do that is limit our exposure to the media, so we don’t dwell on what is going wrong. Perhaps checking news only once or twice a day, and filling the day with things like activities you enjoy, healing music, and positive relationships.

2. Who am I checking in on, or who am I connecting with today?

(Many participants said a family member, and others said a fitness buddy)

There are multiple levels of benefit to fitness programs such as boxing, as there is also an emotional/ social component to them as well (many programs are happening virtually right now).

Perhaps there is someone in your life who lives alone, or may be more isolated than others, that you can check in on. Isolation is of course so profound now. There aren’t in person fitness programs, church services, or support groups right now as we had before. Connecting with someone might be a phone call or a note you write. It’s important to remind ourselves we are not alone during this time; we are actually very much in it together.

Feelings of isolation are associated with negative health effects such as increased stress, decreased immune systems, etc.

3. What expectations of normal am I letting go of today?

(Participants said attending community events, sticking with schedules, shopping without anxiety)

There is very little that is normal right now. Getting groceries, exercising, even attending doctor appointments are all different these days. It’s important to remember this is probably not the best time to put a lot of pressure on ourselves to learn a new language, or tackle a big project. We are so bombarded with information that is unsettling and worrisome. There are many questions we don’t have answers to, and our nervous systems can barely keep up with what the latest information is about health, finances, and employment. This is a good time to practice some self-compassion, as it is a very stressful time. It is a lot to just wake up, be, and get through the day right now.

We do tend to do better when we are sticking to a schedule. This might be different right now, but it can help to try to get up at the same time everyday, as well as eat meals, exercise and go to bed around the same time everyday. Having some kind of routine can help reinforce a sense of security and control.

There are more options right now to participate in activities that don’t involve leaving your home.

4. How am I getting outside today?

(Participants said taking walks, taking a drive, doing yard work)

Research shows just getting outside/ being outside is so healthy and restorative. There is new research that shows just being around the color green outside is very soothing, and associated with lowering stress levels and being very comforting. The sounds of nature outside, such as birds, wind, stream, help us focus in the here and now, and step back from worry of tomorrow.

This touches on the mindfulness exercises that we know are so helpful. Parkinson.org hosts a Mindfulness Monday every Monday. These are techniques that you can carry with you anywhere you are.

5. How am I moving my body today?

(Participants said taking walks, walking the dog, virtual exercise, cleaning)

There is no way to count the research that we already have about the health benefits of moving your body. It doesn’t have to be a lot. 30 minutes a day is associated with optimum benefits. This could be chair exercises, a walk around the neighborhood, walking a dog (which can also help the isolation we may feel, as a conversation starter with people outdoors). Moving the body is associated with improved immune system and greater physical and psychological resilience. Really all areas of our health are positively impacted, and it may be one of the most powerful tools we have to take control of our own mental health.

6. How are you cultivating, creating or inviting beauty into your life today?

(Participants said gardening, spending time with a loved one)

You may notice many of these touch upon multiple areas. For example, gardening can be cultivating beauty, getting outside, and moving your body. Getting our hands in the dirt and watching something grow and bloom can be very therapeutic and counteract messages of doom and hopelessness.

Right now there are ways to virtually participate in museum tours, listen to opera or other musical performances, even visit parks and zoos, all through a screen.

Questions from participants

  • My mother lives with me and relies on me solely for entertainment and interaction and won’t do things on her own. I also have two grandchildren I watch almost everyday. How do I juggle my life, especially in these times?

Many caregivers are finding themselves with these questions. Home health has ceased or diminished, we can’t attend support groups or spiritual gatherings or other outlets we used to have. This caregiver probably can’t make her mom chose anything different, but there are things the caregiver can make sure she is filling her own bucket. We cannot give out of an empty bucket. This caregiver should make sure she is getting some breaks, has people she can talk to, has some time she can get away, and that she is getting enough sleep and eating right, thinking of her own gratitude. Maybe there is something the mom and the kids can do together, a joint project like painting or growing plants.

  • In terms of staying safe during these times, what kind of questions should someone be asking of a person to come into the home for caregiving support?

First off, it’s important to get the okay from your health care provider. No two people are exactly the same, and your provider will know more your particular risk level category. Next, find out from the organization/ agency what they are doing to take precautions. You can share this with your doctor to make sure this sounds reasonable. Also important is your own comfort level. Some people are more comfortable with no one coming in right now, while others might be more comfortable with what they were doing prior to the pandemic. The CDC guidelines are important to adhere to. We all have to take the guidelines, adhere to them, look at the risks, and find a way to live our lives, and decide with our loved ones how we are going to do that. When we feel like we have no choice, that can be profoundly depressing. Even in a circumstance like this, we all have choices.

  • When you’re with someone all the time now, when you had breaks before, how do you manage the frustration that can come up?

This question doesn’t just apply to caregivers and those receiving care! There are parents homeschooling and couples together who are also asking this question. Being able to recognize and acknowledge the feelings we are having (anger, frustration, impatience) is a step in the right direction.

How can I handle these feelings? Taking a moment to step back, step away, practice deep breathing, going outside, all the self-regulation behaviors can really help here. There is the 4-7-8 breath which is breathe in for a count of 4, hold for a count of 7, and breathe out for a count of 8 (exhaling longer than inhaling). These can be ways to give our emotional brain a moment, which can help us respond instead of react.

When it comes to caregivers, they can often forget that they have needs that deserve care and attention too. Caregiver strain is real and can be devastating. For having conversations with people we are caring for, Martha Anne recommends coming from a place of respect, honor, love, and kindness. She says to hold the point of view of being on a team and a journey together, with both people needing to be able to go the distance. Often times the person being cared for feels guilt as well, and concern for how the caregiver is doing.

  • What are some things a care partner needs to look out for in regards to their own mental health?

There is an excellent care partner summit that Parkinson’s Foundation hosted in May that is now available to view online and is a great resource (https://www.parkinson.org/Summit).

Ideally, as part of the plan from the beginning, care partners would add in their own support being part of the picture. A lot of times care partners think they can manage on their own, without having to ask for help. Asking for help is a wise decision.  

As for what to look out for, feelings of guilt, feeling ashamed, feeling guilty for feeling guilty, being short and irritated with the person receiving care, and examining self-talk. With Parkinson’s Disease, there can be symptoms that are extremely hard to deal with such as hallucinations, or the person becoming belligerent. The more you can get support and keep yourself healthy and strong, the more you can see what is the disorder/ pain and what is your loved one. We all need someone to talk to. This doesn’t have to be counseling, it can be good relationships, a neighbor, or spiritual mentor. Counseling is a good idea when you find yourself repeating behaviors you don’t really understand and that are causing more problems than they are helping.

“How to Build Resilience While Living with Parkinson’s” or other disorders – webinar notes

With the pandemic, I’ve been reviewing materials received in the past on the topic of resilience. This blog post is about a webinar in January 2019 on building resilience while living with Parkinson’s Disease (PD). The webinar featured the wonderful palliative care chaplain at UCSF, Judy Long. Though the webinar’s title includes “Parkinson’s,” there is nothing in Ms. Long’s presentation that is specific to PD. Several of the questions are about coping with PD but these questions (and their answers) relate to coping with any neurological condition.

In this webinar, Ms. Long notes that it is only when we notice feeling upset or threatened that we can make a choice about how to respond.  If we don’t notice how we feel we have little hope of making a choice of how to respond and will only react instinctively.  

Through a series of explanations and exercises, Ms. Long presents four obstacles to resilience and tools to overcome each of them through intention and practice.

Obstacles to resilience, or what gets in our way of bouncing back the way we want to:

  1. Not noticing how we feel.
  2. Believing the current circumstances don’t make sense, shouldn’t be happening or are meaningless
  3. Believing I’m all alone and nobody else understands, or feeling isolated
  4. Believing you are helpless and there is no skillful action you can take to change the situation

What can we do to counter these obstacles? There is an opposite to each of these obstacles.

  1. The opposite of meaninglessness is what matters to you most or purposeful positive intentions.
  2. The opposite of isolation is authentic connection with others.
  3. The opposite of helplessness is realizing the choices you have.

Ms. Long offers exercises to overcome these obstacles.

The speaker makes some observations about caregivers:

Even though your inclination may be to handle difficult situations alone, if you do that all the time it is stressful both emotionally and physically and, therefore, unhealthy.  Caregivers tend to fall into this category.

Even when [the caregiving] is difficult and we feel exhausted, it makes a difference to our energy level to remember why we are caring and that it is based on love.  Burnout includes meaninglessness, isolation and helplessness…

Brain Support Network volunteer Denise Dagan listened to the webinar back in January 2019, and shared her notes. (Unfortunately the webinar recording is no longer available online.)

Robin

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

How to Build Resilience While Living with Parkinson’s
Davis Phinney Foundation
January 15, 2019
Notes by Denise Dagan
Speaker: Judy Long, outpatient palliative care chaplain at UCSF


We all have resilience but we can always strengthen our resilience so we can sustain demands of caregiving or other stresses.

When we feel something is difficult there can be a sense that something is threatening us, like pain, exhaustion or other discomfort.  We may feel as though we need to fight the threat.  This is due to the fight or flight response, which is instinctive. The alternative is to freeze and not do anything.  There may be better responses that will help us bounce back to a more normal state, as opposed to feeling threatened.

A prime skill that will precede everything else, if you can notice that you feel threatened or upset, that noticing is the most important thing you can do because it allows you to make a choice about how to respond.  If you don’t notice how you feel you have little hope of making a choice of how to respond and will only react instinctively.

Obstacles to resilience, or what gets in our way of bouncing back the way we want to:
1. Not noticing how we feel.
2. Believing the current circumstances don’t make sense, shouldn’t be happening or are meaningless
3. Believing I’m all alone and nobody else understands, or feeling isolated
4. Believing you are helpless and there is no skillful action you can take to change the situation

What can we do to counter these obstacles? There is an opposite to each of these obstacles.
1. The opposite of meaninglessness is what matters to you most or purposeful positive intentions.
2. The opposite of isolation is authentic connection with others.
3. The opposite of helplessness is realizing the choices you have.  

Overcoming meaninglessness is positive intention — positive intentions for the good of others can be values you hold dear, like kindness, patience or love (giving and receiving). The most important thing to you may be your family or courage. There are many options, but it should make you feel positive and that you care about the wellbeing of others.

Exercise: Choose an intention each day.  Try this exercise more than one day to see how it works for you. In the morning, before you rise from bed, choose an intention and try to remember that intention throughout the day.  When you’re speaking with someone and begin to feel stressed (annoyed, etc.) use that as a cue that employ your intention.  See if that intention changes the way you respond to that person and in other situations throughout the day. At bedtime review if/when you remembered your intention throughout the day and how it improved the way your interacted with others.  Decide if you will keep with the same intention the next day or try another (kindness, patience, courage, etc.)

Exercise: Think of an interaction that will happen in the next day that will be challenging and pick a specific intention for that interaction that is positive.  If you hope not to get angry or annoyed, turn it around and intend for the other person to feel loved or that you are being patient, etc.

Overcoming isolation is authentic connection with others — connection is protection. This is true from the time of cavemen.  If we hadn’t connected as early humans, we wouldn’t have survived to modern times.

Many of us want to be alone when we are upset.  Sometimes, we need some alone time to process what is going on, how we feel about it and how to respond.
Even though your inclination may be to handle difficult situations alone, if you do that all the time it is stressful both emotionally and physically and, therefore, unhealthy.  Caregivers tend to fall into this category.

Exercise: Notice if you are going it alone too much of the time and make the choice to connect with someone else. Think about who you can bear talk to even though you are upset and make the effort to reach out to them for input and support.

Overcoming helplessness is to make a skillful choice
. Ms. Long tells the story of a concentration camp survivor who emerged whole and developed a psychological theory of meaning.  Everything can be taken from a person excepting the freedom to choose one’s own attitude in any given set if circumstances and the capacity to act even.

Skillful choices you can make are positive intentions, connecting with others or this grounding exercise.

The psychology of positive thoughts is that even when we have a positive series of negative thoughts, we can overcome them with a series of positive thoughts. The benefits of positive thoughts is both emotional and physical.

Exercise: Toward the end of your day think back over the things you were grateful for.  Try to come up with three things.  Name it and say in your mind specifically what you are grateful for.  Jot down on a piece of paper each thing you are grateful for and why.  Go to sleep.  Repeat this exercise for at least two weeks.  At the end of that time reflect back and see if you notice positive things throughout your day, not just at night.  Where we place our intention is what we notice and how we act.

Example: I am thankful for my hot shower this morning.  I am grateful for the massaging way the water hits my back.

Example: I like my hot oatmeal this morning.  It was tan, lumpy, hot, sweet and lumpy.

Example: I am grateful for my husband/child.  Be specific:  My daughter gave me a big hug when I was feeling sad. I was grateful my husband brought the trash can behind the house.

Grounding Exercise: If you know thinking about your breath makes you nervous, you may want to skip this exercise. Extensively studies and found to bring humans into a calmer state of mind when our nervous system is stressed.
Direct your imagination to your heart area.  Place your hand over your heart to enhance the experience. On the in breath, notice that your chest expands.  On the out breath, notice that your chest deflates.   Pretend you can breathe in directly into your heart, as opposed to your lungs.
If your mind wanders, just notice that has happened and bring focus back to your heart and resume breathing into and out of your heart.

Questions-and-Answers

Q. I have early PD and my husband/care partner has early Alzheimers.  We don’t have close family and I have always cared for him.  We are in our mid-70s.  I am so tired.

A. People in early stages of memory loss can remain in the stage of mild cognitive impairment for quite some time.  The best way to encourage that is to have him continue to do as much for himself as possible, keep socially engaged, maintain your physical closeness and foster an intent of patience and care for each other.  When you do something that is beneficial for someone you care about you benefit, yourself, emotionally.  Part of the caregiving instinct comes from evolution of tribal and parental caregiving.  Even when it is difficult and we feel exhausted, it makes a difference to our energy level to remember why we are caring and that it is based on love.  Burnout includes meaninglessness, isolation and helplessness so these exercises counter burnout.

Q. How do you deal with the reality that PD is your future and will only get harder?

A. I am, by nature, someone who likes to look issues directly in its face.  A little information gathering helps me prepare and realize how it will get worse so you can prepare and plan ahead.  That may include some home remodel or relocation, for example.  Taking action to put steps in place can reduce stress. Alternatively, using the tips from this webinar will help you get through each day and life’s others heartbreaks that have nothing to do with PD.

Q. What about the role of a PD care partner who is more concerned with the illness than the person with PD?

A. My inclination is to meet with one, the other, or both partners one-on-one.  Not being in the room with these people to have a conversation about it, I will share how emotions work.  We need to understand how to meet difficult emotions.  It is hard to be around someone who is experiencing difficult emotions.  Try transparency: at a time when you don’t feel upset about this situation, try telling your partner that you would like to share with them at some point how you feel about having PD and have a conversation about it.

Some people find gathering information is useful.  What you do with that information can be practical and helpful and make them feel in control.  It can also be a way to avoid dealing with the emotions the other person is dealing with.

Q. As a care partner to my friend, I notice he/she (has had PD for 11 years) becomes childlike and needy when I’m around, but not so much when his aides are with him and I am not.  This co-dependence is exhausting.  How do I help him learn to be self sufficient?

A. Think about how you can tell the truth in a way that is kind.  You might say to your friend that you’d like to see if he/she might be able to do ___ on his/her own.

Q. What if the person with PD wants to talk about PD all the time and the care partner does not?

A. Try to redirect toward areas of resilience the person with PD can build for themselves.  Suggest some of the exercises in this webinar.  Do them together. Empathize with their feelings underlying their desire to talk about PD, but redirect to resilient skills or social activities to help them feel more emotionally strong and more healthy.  The gratitude practice can be the most beneficial for everyone, including those with PD.