“Practicing Wellness to Build Resilience” – Webinar Notes

On April 1st, the Parkinson & Movement Disorder (PMD) Alliance (pmdalliance.org) presented a wonderful webinar on “Practicing Wellness to Build Resilience.”  The webinar focused on the connection between resilience and physical health.  The speaker, Julia Alleyne, MD, defined resilience as finding our own inner strength to deal with discomfort, distress, and uncertainty, when we are unsure what the outcome will be. 

She believes that resilience can be built by:

  • Having gratitude
  • Having empathy for others
  • Understanding happiness and the ability to experience human connection
  • Having a sense of purpose

One issue we see a lot with caregivers is their unwillingness to practice self-care. Dr. Alleyne ties self-care to this sense of purpose:

Having purpose to fulfill your own needs is not selfish. It’s self-care. You are lessening the burden to others, and increasing your ability to care more for others. Change the idea of selfish to self-care, that you are helping others as well as yourself.

Dr. Alleyne says creating a wellness corner in your own space is very useful. It doesn’t have to be big or elaborate. Some advice:

  • De-clutter it. Clutter represents a to-do list, which is interfering with ability to focus on the here and now. Try to create a space to refocus.
  • Have something to focus on. This might be a painting, picture, fireplace, etc.
  • Plants to nurture
  • A place you feel relaxed and grounded
  • Could be a windowsill, maybe with plants, statues, stone, picture, etc.

The webinar is worth watching or reading the notes (see below). The webinar was recorded and can be accessed here:


Adrian Quintero, with Stanford Parkinson’s Community Outreach, took notes from the webinar. See below.



“Practicing Wellness to Build Resilience”
Webinar by Parkinson & Movement Disorder Alliance
April 1, 2020
Notes by Adrian Quintero, Stanford Parkinson’s Community Outreach

Julia Alleyne, MD became interested in wellness at the age of 13 when her father broke his leg while skiing. She was the oldest of five kids, and believes her resilience started with having to take on responsibility and use skills she didn’t know she had in a situation she didn’t quite understand.

Dr. Alleyne went on to become a physiotherapist. In her practice she had a focus on exercise, prevention and health maintenance. She believes the partnership between patient and provider is key. Early in her career she wanted to empower people to have better self care and feel they could have a say in their well-being.

Later on, Dr. Alleyne went into sports medicine, and worked with Canadian Olympic teams. A survey was given to the athletes that found 75% of them didn’t sleep well during the games, and as we know, sleep is so important. Also they found that athletes who did yoga at home didn’t do it during the games.

At some point a wellness center was established during the games. Another doctor on Dr. Alleyne’s team got a cancer diagnosis during the Olympic games. He went to the wellness center everyday to get peace of mind. The center was a peaceful and calm place made for rejuvenation. It helped the doctor cope better, and athletes benefited from the center as well.

Wellsense Website

Dr. Alleyne was not “into” social media when COVID hit. But with more people working at home, news stories building, she decided to put up a post. The post was about framing this current situation with inner strength, not letting worry erode what we already have. She made a commitment to do something everyday we are in this together. This lead to the creation of a website, Wellsense (wellsense.net), which serves as an open, public website of wellness. Dr. Alleyne wishes to turn science into common sense so people can connect with it.

A post about resilience has been the most popular post on the site. How do we define resilience? She says it’s finding our own inner strength to deal with discomfort, distress, and uncertainty, when we are unsure what the outcome will be. Dr. Alleyne sees the definition to be about our own inner strength. How do we build resilience? It’s about our mindset, how we look at the world.

When we look to people who have overcome difficulty, we see they continued to have hope, and they didn’t get lost in the big picture. These people are not unrealistic optimists, but rather they see there has to be a way to do things, and that attitude becomes practiced.

Some Resilience Builders

  • Having gratitude is a wonderful resilience builder
  • Having empathy for others, we actually build our own empathy and strength to deal with ourselves
  • Understanding happiness and the ability to experience human connection
  • Having a sense of purpose, which contributes to a sense of value and worth

Wellness List

When Dr. Alleyne worked with the Olympic team, the athletes had a wellness list as a reference. This was based off of indigenous people’s medicine wheel with four quadrants to wellness — physical, emotional, intellectual and spiritual. When you nurture and balance each of the quadrants, you have health.

  • Physical: How am I physically feeling today? (Sleep, eating, hydration)
  • Emotional: How am I doing emotionally? (If it’s the blah zone, where do I need to be? How can I get more energy going? Listen to music? Positive self talk?)
  • Intellectual: How am I doing intellectually? (Starts with awareness of self, of relationships, and surroundings)
  • Spiritual: How am I doing spiritually? (What’s my belief system? Is it “Do unto others as you would have them do unto you” Whatever it is, make it an action. Maybe you need to listen to music, read a reflection, pray, etc.)

The emotional zone you can shift; you can change your emotions. Examples are using music or self talk. Scientifically, self-talk is based in Cognitive Behavioral Therapy (CBT). You look at the three different realms of feelings, thoughts, and actions.

  • What are my feelings? (Down – news not getting any better.)
  • What are my thoughts? (I don’t want to get out of bed. Is this really ever going to end? What’s the point?)
  • What are my actions? (At that point, I say to myself, before I take action, can I change my feelings or thoughts? What’s my choice for today? The choice gives us control.)

Creating a Special or Sacred Space for Self-care

Dr. Alleyne says creating a wellness corner in your own space is very useful. It doesn’t have to be big or elaborate. Some advice:

  • De-clutter it. Clutter represents a to-do list, which is interfering with ability to focus on the here and now. Try to create a space to refocus.
  • Have something to focus on. This might be a painting, picture, fireplace, etc.
  • Plants to nurture
  • A place you feel relaxed and grounded
  • Could be a windowsill, maybe with plants, statues, stone, picture, etc.

Possible Silver Linings from this Pandemic

  • Having more time with our “home buddies” (pets- for her, bonding with a cat)
  • She thinks when this is over we will have deepened connections to those most important to us
  • Hoping we will understand much better how to care for elders as valued members of society who need help
  • We have to emerge as a stronger society. The virus is most destructive with vulnerable people, and we have to learn how to care better for the vulnerable.
  • Become barrier free. Right now there are lots of opportunities to learn technology and do things on-line. She thinks that’s good, it’s pushing us to modernize, and not be as dependent on physical experiences. In communities with disabilities there are so many barriers, taking down these barriers is good.

Social Connection

There is research in the Parkinson’s Disease world that social connection is a good prognostic. In aging and wellness spaces, talk about socially connecting is helpful; whether it’s a walk, yoga class, dancing in a group, etc.

How do we continue to socially connect in this social distancing era? And how do we access people who are not connected to Internet?

In Europe, we saw the need to connect without technology. Opening windows and singing on balconies and hearing another voice is a connection.

That can go further with the telephone. You don’t need the Internet to feel connection. It can happen through a window, leaving something on a doorstep, ordering or receiving a delivery, etc.

The news is starting to show stories of connection. In Toronto people are opening their windows and singing the national anthem. Then they are honking their horns at evening as thanks to frontline workers.

We have to reach out and we have to be able to respond. If you’re feeling isolated, reach out. If someone is trying to reach out, respond. Reach and respond keeps us connected.

Sense of Purpose

What happens to people who feel they can’t give and help right now? What about people who are being told to stay inside when they volunteered before?

Dr. Alleyne has some tips on keeping a sense of purpose in this time frame. She says purpose is filling a need – it might be our own or another. The problem is we don’t know how it will all fit together until years later. We don’t know the full value of our actions. Does it fill a need? If so, go further with it. Don’t worry about evaluating the purpose. All purpose is good. How do we pivot or reshape our own expectations when what we have been doing as a purposeful activity has changed? This requires coping skills and creativity.

Having purpose to fulfill your own needs is not selfish. It’s self-care. You are lessening the burden to others, and increasing your ability to care more for others. Change the idea of selfish to self-care, that you are helping others as well as yourself.

At this point, Dr. Alleyne asked attendees a survey question: On a scale of 1-10, when faced with a difficult situation, how did you actually cope?

1 means “I did not cope. I needed lots of help.”

4 means “I managed eventually but had difficulty figuring out my way.”

7 means “I did better than I expected and learned new coping strategies.”

10 means “I copied much better than expected and I even helped others.”

Based on the answers, her input is:

1-3: If your answer was in this range, call for help early. Don’t let it overwhelm you. The longer you aren’t coping well, the harder it gets.

4-6: You want a bit of number one – ask for help early.

7-9: (no comment here)

10: That builds confidence, and confidence is a tremendous resilience builder.

The reality is we learn from every situation. We learn what we know, and we learn what we don’t know. That helps us shape how we will deal with the next situation.

“Managing daily activities and fall prevention” in Lewy body dementia – UCSF webinar

In early April 2020, the UCSF Memory and Aging Center (MAC) hosted a webinar on managing daily activities and fall prevention — the third in its ongoing series on Lewy body dementia (LBD).  The two wonderful speakers were Sarah Dulaney, RN, clinical nurse specialist with UCSF, and Helen Medsger, long-time Brain Support Network LBD support group member.  Helen cared for her sister with LBD.  They discussed the importance of establishing a daily routine and preventing falls, plus provided activity suggestions and tips for communication.

While the webinar was geared towards LBD caregivers, caregivers to those with all dementia types may benefit from these webinar notes.

Thanks to Helen Medsger for alerting us to the MAC’s LBD webinar series.  You can find the list of the full series here:

UCSF Lewy Body Dementia Caregiver Webinar Series

The April 7th webinar featuring Sarah Dulaney and Helen Medsger was recorded and is available on YouTube:


The MAC is asking that everyone who views the recorded webinar provide feedback through a brief survey here:


This webinar is worth listening to and/or reading the notes (see below)!

If you missed the first two webinars in this series, check out some notes here:

What is Lewy body dementia?

Behavior and mood symptoms in Lewy body dementia

For further information on Lewy body dementia, look through Brain Support Network’s list of resources:

Brain Support Network’s Top Resources on LBD

Lauren Stroshane, with Stanford Parkinson’s Community Outreach, listened to the webinar and shared her notes.  See below.


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Managing Daily Activities and Fall Prevention – Webinar notes
Presented by the UCSF Memory and Aging Center
April 7, 2020
Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach

In the third webinar of the UCSF Memory and Aging Center (MAC)’s webinar series on Lewy body dementia (LBD), speakers Sarah Dulaney, a Clinical Nurse Specialist with UCSF, and Helen Medsger, who has personal experience caring for family members with LBD, discussed practical strategies for daily activities and maintaining safety in those with LBD.

Why establish a daily routine?

Creating and sustaining a daily routine can help your loved one to maintain autonomy and function for as long as possible. A routine also helps accommodate for the loss of executive function, apathy, daytime sleepiness, and anxiety that often go along with LBD.

When establishing a daily schedule, it is important to adjust expectations and adapt your approach for your loved one’s current abilities and needs — which may gradually change over time.

Our role as care partners is to support the individual, to help them maintain as much of themselves as possible, and to adjust with them as the disease progresses.

How to establish a daily routine?

“Knowing what to do for an ill person and what to cease doing begins with understanding what life is like from that person’s perspective.” 
– Wendy Lustbader, “Counting on Kindness”

Put yourself in your loved one’s shoes:

  • What may they feel like? How has their daily life changed? How do their thought processes work differently now?
  • Can they still do their daily hobbies? Have they had to stop working? Have they lost friends?

Spend some time observing their existing habits and preferences, as well as safety needs. If he or she is able to converse with you, have an open discussion about the following topics as well. Try to learn what in the environment triggers positive or negative responses from them. Note any safety concerns to be addressed. Determine what activities or items they seem to enjoy. It can be helpful to use tools – such as a list, calendar, whiteboard, or other technology to help stay on track throughout the day. It’s important to start simple and be flexible.

Micro-managing is exhausting for you and for them, but making a list of general tasks and activities can be helpful. A sample morning routine could include:

  1. Get up, wash your face, and get dressed
  2. Prepare breakfast
  3. Eat breakfast and take morning medications
  4. Discuss the news over coffee
  5. Brush teeth
  6. Work on a project or reminisce over old photos
  7. Take a break with quiet time
  8. Take a walk, dance, or toss a ball
  9. Do simple chores together

Certain environmental strategies can go a long way to supporting independence, by making the environment more conducive to their safety and independence:

  • Ensure good lighting to minimize shadow and glare.
  • Reduce clutter – visuospatial deficits make it harder for them to see different objects clearly. For example, rather than keeping all your loved one’s clothes hanging together in a full closet, consider boxing some of the closet contents and gradually cycling through them, to keep the closet emptier and easier for the patient to use.
  • Avoid overstimulation; when possible, reduce visual and auditory noise.
  • Use color contrast to help them navigate the home despite visuospatial challenges. One example is using red for essential items in the bathroom like grab bars, doorknob, towels, toilet lid – each of these essential items was bright red. For meals, you could use cutlery and dishes that are all the same bright color to help them function.
  • Set up items needed for a task in the order the patient will use them.
  • Consider adaptive devices and home modifications – see if you’re covered under Medicare or your other insurance to undergo an OT eval at home & see what you can do to make the home safer.

The Alzheimer’s Association has a helpful home safety checklist, available for download as a PDF here:

Keep track of “security items”

Those with LBD often have “security items,” personal belongings to which they are particularly attached, often a purse, wallet, keys, eyeglasses, or a book. Without their security item, they may become agitated and suspicious, believing it has been stolen. Helen recommended keeping those items readily available for your loved one so they don’t become anxious.

She also offered the suggestion that you keep a “backup” for each of their security items in case the items do get lost, which can trigger anxiety and agitation. For instance, if the patient always needs to her purse handy, with her wallet, credit cards, and eyeglasses, you could keep an older purse (or a duplicate of her current purse) with old, expired credit cards, and older prescription glasses as a ready substitute. Make sure you keep photocopies of any active credit cards, in case they do go missing.

Use verbal, visual, and tactile cues

Individuals with LBD gradually lose the ability to sequence actions and complete multiple tasks or steps in order. Helen gave an example of her sister, who had LBD, who would rush to the bathroom sometimes, but then forget what to do next once she was in the room. By giving simple verbal instructions, one small step at a time, Helen was able to coach her through using the bathroom:

  1. “Do you need to go to the bathroom?
  2. “Walk to the toilet.”
  3. “Turn to face me”
  4. “Back up.”
  5. “Pull down your pants.”
  6. “Pull down your underwear.”
  7. “Sit down now.”
  8. “Relax.”

With this type of support, the individual can sometimes still do some things for themselves. The key is to stick to one or two step instructions, often “yes or no” questions, and providing no more than two options (i.e. this one or that one, now or later). For some people, demonstrating visually what you are encouraging them to do is more helpful than verbal cues. For others, tactile guidance – such as guiding their dominant hand to do the task – is most useful.

Other communication tips

Focus on connecting with the person. Set a positive mood with your tone and body language – stress is palpable even across the room. Take your time and don’t rush. Use gentle humor – but respectfully, not making fun of them. Rather than asking if they “want to” do an activity, say “it’s time” to do it. Ask the person to help or “give it a try” to encourage them to do things they can still do independently.

If it’s not working, move on, and try again later. Consider using rewards if nothing else works. Some people use food treats, though it doesn’t have to be that. Helen prefers activity rewards or positive feedback instead. Simple incentives are best.

Ideas for in-home activities

Try to keep the person physically and socially engaged. Once we get past the current COVID-19 isolation, outdoor activities will be possible again.

  • Grooming: manicure, hairstyling, “dress up” or “spa day”
  • Exercise: bicycling, boxing, aerobics classes or videos, seated exercises
  • Chores: gardening, sweeping, wiping, sorting, folding, cooking
  • Entertainment: magazines, books, television, audiobooks, music, podcasts
  • Recreation: simple games, puzzles, coloring, painting, clay, ball toss, singing, trivia
  • Relaxation: prayer or meditation, reading or audiobooks, nature walk, scenic drive, music, massage, nap, stuffed animal or soft blanket
  • Animal therapy: pets can be great companions for those who like animals

Take a pragmatic approach to activities

Pace yourself! It’s not a race. You’ll be dealing with apathy, decreased attention, and daytime sleepiness which are common barriers to engagement. If daytime sleepiness is a major barrier, consider contacting the healthcare provider to see if there are medications that might help, though this is not a first line option.

Shorter, more frequent episodes of activity (5-15 min) may be a more realistic goal. Say “please join me” rather than “do you want to.” Find ways to connect through activities of daily living, such as laughing, singing, conversation, and touch.

An example of how to simplify an activity – how to retain the pleasure of an activity as the disease progresses – is knitting, if the person was an active knitter previously:

  • Knit a simple potholder with bigger needles
  • Try using a square weaving frame for children
  • Roll loose yarn into a ball
  • Choose colors and “direct” others
  • Glue bits of yarn and fabric onto cardboard
  • Look at knitting photos in a book or magazine
  • Watch knitting videos
  • Hold soft pillow or lap blanket with tactile yarn, ribbon, or beads sew onto it

Connect remotely through technology

For those with LBD, having to “pick up” when someone calls can be stressful and confusing. Drop-in video visits that don’t require the person to “pick up” may be best, such as the Amazon Echo Show, a smart speaker that can be programmed with friends and family who can drop in, or other technology like GrandPad, Nest, or video baby monitors. Other options that do require someone to be able to accept the call include FaceTime, Skype, Zoom, or Google Duo. The Amazon Fire Stick with smartphone app provides a remote that can control programming remotely through existing subscriptions or YouTube.

Preventing falls

People with dementia are at higher risk for serious fall-related injuries. Mortality from falls has been increasing in the last few decades; we’re not entirely sure why. Falls were the cause of injury in 90 percent of injury-related hospitalizations among older adults with dementia, and can cause life-changing injuries such as hip fracture, often precipitating a cycle of increased dependence on others for their care.

Injuries can set off a downward cycle in which the person is unable to exercise due to injury, thus becoming very deconditioned and losing a lot of muscle strength. This leads to greater dependence on help from others, which in turn increases the risk of future falls due to a lack of strength and independence. Not only does this decrease the quality of life for the patient, it also increases the burden on the caregiver.

Why are people with LBD more prone to falls?

  • Mobility changes: they can’t move as well as previously due to stiffness, slowness, and sometimes tremor or freezing of gait.
  • Problems with blood pressure regulation can cause fainting and falls.
  • Urinary urgency means sometimes needing to get to the bathroom urgently.
  • Visual processing changes make it harder to navigate the environment safety.
  • Slowed thinking, deceased safety awareness, inattention, and impulsivity are common.

Strategies for improving gait and mobility

There are a lot of little tricks that can help the brain get out of episodes of freezing of gait (FOG), if they occur. Working with an experienced physical therapist can be very beneficial for practicing some of these strategies:

  • Counting, marching, or singing a marching song while walking
  • “Skating” movements to shift weight rather than stepping
  • Walking sideways
  • Using a scooter! Not necessarily recommended due to safety concerns.
  • “Dribble” a tennis ball so the brain focuses on the dribbling motion and forgets to freeze
  • Leaning forward and picking up a large ball to combat the risk of falling backward, for those who tend to lean backward as is common in LBD

Again, a physical therapist is best equipped to each you some of these techniques. They can also provide instruction in how to fall safely and how to get up from a fall; make recommendations for home modifications and assistive devices; develop tailored exercises to optimize function and minimize risks; and provide referrals to community-based fall prevention and/or exercise programs.

Some programs may be available to you locally, once shelter-in-place orders have lifted. Check the program website to see what they may be offering remotely during the COVID-19 crisis:

Parkinson Wellness Recovery (PWR!)
Dance for PD
Rock Steady Boxing

Problems with blood pressure regulation are a major fall risk in LBD

As discussed in the previous webinars in the series, autonomic dysfunction is common in LBD, causing dangerous fluctuations in blood pressure that can lead to dizziness, weakness, and falls. This is called orthostatic hypotension (OH). Common triggers for these fluctuations:

  • Sudden changes in position, such as bending over, getting out of bed, or standing up
  • Overheating, due to hot weather, exercise, or a hot shower
  • Standing for too long
  • Eating a large meal
  • Using the bathroom

What should you do if episodes of dizziness, lightheadedness, and falls are occurring?  

Most importantly, report any falls or new symptoms to their doctor. When you go in for a visit, ask if they can check orthostatic blood pressures, which means checking and rechecking the patient’s blood pressure when they are lying down, sitting, and standing, to assess if they are having episodes of OH. It may be wise to purchase an automatic blood pressure machine so that you can monitor their blood pressures at home, particularly when episodes of dizziness or lightheadedness occur.

Ask the doctor if any of your loved one’s current medications might be exacerbating these issues. For instance, levodopa is a medication commonly used to treat the motor symptoms of LBD, such as tremor, stiffness, and rigidity, but it also tends to lower blood pressure and might need to be decreased if episodes of OH are happening.

Also check with the doctor if it is safe to try “conservative measures” to support the blood pressure, such as increasing fluid intake, wearing pressurized stockings or an abdominal binder, or increasing salt intake. It is important to ask because, for some individuals who have a history of heart disease or high blood pressure, these conservative strategies may not be safe.

Other things that might help:

  • Have the person sit at the edge of the bed for a few minutes before standing up in the morning.
  • Offer smaller, more frequent meals and snacks rather than fewer large, heavy meals.
  • If blood pressure is low or the person feels dizzy, help them sit or lie down.
  • If these symptoms keep happening and are causing falls, ask the healthcare provider about medications to increase the blood pressure, which are sometimes necessary.

Visuospatial deficits can contribute to falls

People with LBD no longer process visual information the same way as the rest of us. They typically experience difficulties with depth perception and spatial awareness, and may have trouble distinguishing shapes, colors, shadow, and glare. These changes can lead to freezing at doorways and rugs, being unable to see stairs, missing the chair or bed, or reaching for objects that may not help with balance, such as a tall plant. It may be more difficult for them to recognize things, people, and places; these perception problems can trigger visual hallucinations as well.

Fortunately, there are ways you can help accommodate for these changes in their visual processing:

  • Decrease clutter
  • Increase color contrast
    • Apply brightly colored tape to edge of stairs
    • Choose a colored toilet seat, grab bar, shower bench, etc.
  • Avoid high contrast patterns on the carpet, walls, or flooring
  • Remove or secure rugs
  • Improve lighting to prevent shadow or glare
  • Consider covering windows & mirrors
  • Choose chairs with armrests and appropriate seat height/depth to make it easier for them to get up and down

Supervision and other strategies to prevent falls

Cognitive changes in LBD lead to decreased safety awareness, difficulty with attention and multi-tasking, and impulsivity. Strategies to prevent falls due to cognitive decline include:

  • Hands-on guidance and vigilant supervision
  • Reduce distractions

Some families do use forms of restraints, such as bed rails, but Sarah expressed reservations about these types of interventions, which can lead to other injuries such as if the person attempts to climb over the bed rails. She recommends harm reduction rather than restraints: put the mattress on the floor, or get a low bed frame, maybe put a mat on the floor beside the bed. Consider a bed alarm (not one that would be startling to the person) if you’re sleeping separately.

As mentioned previously, check with a healthcare provider if there are any concerns about episodes of OH that might be causing fainting or falls. Also let them know about any urgency or frequency with toileting, and consider asking for a referral for outpatient occupational and physical therapy. Make sure their eyes are healthy and that they are wearing prescription glasses if needed. They should also wear well-fitting shoes with heel support and non-skid soles; avoid loose shoes such as flip-flop sandals that can heighten the risk of falls.

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Question & Answer Session

Q: When establishing a routine, how to work around the fluctuations in cognition that are characteristic in LBD?

A: This is a big challenge. Flexibility and simplicity are key. Get to know where your loved one is at; do they tend to fluctuate day by day or more at certain times of the day? Build flexibility into your routine. Help them be the best they can be, for them, not for our needs and wants or ticking off activities on a list.

Q: If a person has an episode of orthostatic hypotension (OH) in the middle of a PT session or exercise, what should we do?

A: They need to sit down or lie down right away to prevent falling. It’s a good idea to let the class instructor know beforehand and see what modifications are possible, maybe having an assistant or a chair handy. Make sure they are really hydrated beforehand. Increase ventilation to prevent overheating. They may need to decrease the workout intensity to avoid such issues.

Q: How is the COVID-19 pandemic impacting people’s daily routines and any advice for caregivers during this difficult time?

A: Do your best, be gentle with yourself, and take one day at a time. Try to manage your own stress so that it isn’t contagious. TV gets a bad rap but may be helpful during this time. Watch something funny or that helps bring back memories, or documentaries or travel shows that may help you learn things. Reach out! Pick up the phone, FaceTime, or text your friends and family.


“Running in Circles: Gerbil Wheel Caregiving” (The Caregiver Space blog)

In this blog post, author Harriet Hodgson says she’s in her 23rd year of being in the caregiving trenches.  Recently, she says she felt like she was running on a gerbil-wheel, never accomplishing anything.  She figures she’s approaching burn-out.  She describes the steps she took to get off the gerbil-wheel of caregiving.  The steps included:

I had a frank talk with my husband.

I ask John to wait.

We modified the daily schedule.

I take better care of myself.

For the full blog post, see below or click on the link.



Running in Circles: Gerbil Wheel Caregiving
by Harriet Hodgson
Apr 14, 2020 
The Caregiver Space

This is my 23rd year in the caregiving trenches. Because I’ve cared for three generations of family members, I know the drill: medication management, making medical appointments, going to appointments, doing laundry daily, finding clothes that fit, activities coordinator, grocery shopping, and cooking healthy meals.

In the last few weeks, I’ve felt like I’m running around a gerbil wheel. It’s upsetting. No matter how fast I run or how long I run, I don’t seem to make any progress. I feel like I’m behind constantly. Why is this happening to an experienced caregiver like me?

To be honest, I think I’m approaching burnout. I haven’t been my usual patient self lately. My husband is paraplegic and says “okay” constantly—his signal to come to his side immediately. I hear “okay” dozens of times a day. “I’m not pressuring you,” he declares, but it feels like pressure.

Health problems influence my feelings. In 2018 I had surgery for uterine cancer. In 2019 I had open heart surgery and a pig valve was installed in my heart. Last week I broke a bone in the arch of my left foot. Hobbling around with a boot on my foot slows me down and makes me clumsy.

Clearly, I needed to take some proactive steps and get off the gerbil wheel. What steps did I take?

I had a frank talk with my husband. At the end of our discussion, he described his “okay” comments as reminders of what comes next—an astute observation. John is more forgetful these days and, now that I know why he says “okay,” I’m more patient. The word doesn’t upset me like it used to.

I ask John to wait. Instead of rushing to his side immediately, I tell him I’ll be there in a few minutes, and explain what I’m doing. “I’m loading the dishwasher.” “I want to finish folding the laundry.” “I’m getting your medications ready.” He understands this and is willing to wait unless there’s an emergency.

We modified the daily schedule. Since it takes an hour to get John ready for bed and takes me longer to do tasks, we start the bedtime routine earlier, around 8:45 p.m. Being in bed by 10 p.m. is my goal and I usually make it. Since John wants me to get a good night’s sleep, he is extremely cooperative.

I take better care of myself. For me, writing is self-care and I love it. During my 39 years as a freelancer, this is the first time I have three books in production at once, and I’m excited. At 84 years of age, I’m still creative, still productive, and still meeting deadlines. This is reassuring, satisfying, and energizing.

I still try new things. One of my recent books is illustrated with doodle art. Though I have a graduate degree in art education, I’d never heard of this art form and did some research. Doodle art is a recent form based on the natural human desire to doodle. The doodle art in my book was so intriguing, I bought a sketch pad and black ink pens to try doodle art.

I’m kinder to myself. If I need a nap, I take one. If I need to put my feet up, I lie on the couch and read. Laundry cam be postponed to the next day. Small as these changes are, when they are added together, the changes are significant. These changes make me a better caregiver. I proved that I have the power to stop running in circles. You can too.


Rochester resident Harriet Hodgson has been a freelance writer for writing for 38 years, is the author of thousands of articles, and 36 books. She is a member of the Association of Health Care Journalists and the Minnesota Coalition for Death Education and Support.  She is also a contributing writer for The Caregiver Space website, Open to Hope Foundation website, and The Grief Toolbox website. Harriet has appeared on more than 185 radio talk shows, including CBS Radio, and dozens of television stations, including CNN.  A popular speaker, Harriet has given presentations at public health, Alzheimer’s, caregiving, and bereavement conferences. Her work is cited in Who’s Who of American Women, World Who’s Who of Women, Contemporary Authors, and other directories.  All of Harriet’s work comes from her life. She is now in her 19th year of caregiving and cares for her disabled husband, John. For more information about this busy author, grandmother, wife, and caregiver please visit www.harriethodgson.com

“Things Keep Getting Scarier. He Can Help You Cope.” (NYT, 4/13/20)

This recent New York Times article may be of interest to those of us trying to cope in these uncertain times.  Here’s the introduction:

In this turbulent moment, a lot of us — myself included — are feeling fear, anxiety and grief. And a lot of us, I suspect, could use some help managing those difficult emotions and thoughts. I had been wanting to talk to someone who could answer that question with practicality and steadying wisdom, so I got in touch with Jack Kornfield, whose work has offered that to me and a great many others over the years. A clinical psychologist and author whose books have sold over a million copies, Kornfield is one of America’s true mindfulness pioneers, a man who helped popularize the once-exotic practices he learned more than 50 years ago when he began training as a Buddhist monk. “Epidemics are a part of the cycle of life on this planet,” Kornfield said. “The choice is how we respond. With greed and hatred and fear and ignorance? Or with generosity, clarity, steadiness and love?”

Read the full article here:

Things Keep Getting Scarier.  He Can Help You Cope
By David Marchese
New York Times
April 13, 2020



Caregiving in the Time of Social Distancing – Chat notes

Sheltering-in-place is particularly challenging for caregivers who relied on day programs and in-home caregivers to provide routine as well as caregiving assistance and respite.  Many day programs are now closed, and some families are choosing not to have in-home care services until the shelter-in-place order is lifted.  In addition, caregivers with family members living in care facilities are not permitted to visit and, in some cases, cannot even send or deliver food or other items.  So, how to keep our loved one busy or connect with them until things get back to normal?

Home Instead Senior Living is hosting a chat series on “Caregiving During Covid-19” on Facebook Live.  The fourth in the series was on April 9, 2020.  Gerontologist Lakelyn Hogan spoke with David Troxel, an expert in dementia care and author of “The Best Friends Approach to Alzheimer’s Care.”  Ms. Hogan and Mr. Troxel discussed this challenging caregiving situation.  They believe that caregivers may find respite in taking a new approach to activities with your loved one.

Though the focus was dementia caregiving, this approach is applicable to all caregiving situations — not necessarily those who are caring for someone with dementia.

Ms. Hogan and Mr. Troxel argue that to provide person-centered care during shelter-in-place means taking the time to gather your thoughts and information about the person you are caring for before you suggest activities to do with them.  Personalize those activities so they have to meaning or interest to your family member, based on the life your family member has led.  Consider:

  •     What sort of personality do they have (shy or outgoing)?
  •     What type of career did they have (and did they love it)?
  •     What hobbies did, or do they enjoy (make a list!)?
  •     Write down 10 things about the person you care for.

Brain Support Network staff member Denise Dagan took notes during the conversation, and shares those notes below.   The question-and-answer portion of the event was focused on dementia caregiving scenarios.


Dementia Care in the Time of Social Distancing, A Live Chat with David Troxel
Facebook Live, hosted by Home Instead Senior Living
April 9, 2020
Notes by Denise Dagan, Brain Support Network

Moderator:  Lakelyn Hogan, gerontologist
Guest:  David Troxel, expert in dementia care and author of “The Best Friends Approach to Alzheimer’s Care”

Lakelyn – Does having dementia increase the risk of contracting covid-19?

David – No, but dementia doesn’t travel alone.  Most people with dementia are elderly and have co-existing conditions, which can make them more fragile and make covid-19 a more severe illness, if contracted.

Lakelyn – It is difficult to keep someone with dementia safe from covid-19 because they aren’t able to remember about social distancing, washing their hands, etc.

David – People with dementia need cueing.  Caregivers should not just remind someone with dementia to wash hands, etc. but wash hands with them or provide hand sanitizer, etc.  If you are living with someone who has dementia you don’t need to stay 6′ from them.  It is more challenging being a caregiver during the shelter in place order because day programs are closed and you may not be having in-home care come into your home at this time.

Lakelyn – Person-centered care is so important for those with dementia, especially now.  Can we talk a little about what person-centered care means?

David – There is no medicine that improves dementia symptoms much.  It has been more than a decade since a new medication has been approved for Alzheimer’s.  Person-centered care is listening, communicating, doing activities together. reminiscing, etc.

“People don’t remember what you said or did, but they always remember how you made them feel.” – Maya Angelou

If you are challenged by being your loved one’s sole caregiver, now is the time to look online and learn tips and tricks for how to provide person-centered care.

Person-centered care is really tailoring every moment toward creating meaningful engagement with someone who has dementia.

There should also be ritual in your day.  One woman I spoke with recently has added a daily happy hour for herself and her husband.

I want to talk a little about keeping the news on all day.  This is not the time for that.  It increases everyone’s anxiety.  Even if the person with dementia doesn’t understand what’s going on with the quarantine,  they do pick up on your anxiety.  Put positive things on TV.  Consider using headphones when you listen to or watch the news.

Lakelyn – What have you heard people doing to cope with this quarantine period?

David – To incorporate person-centered care, start with the person’s life story.  That will inspire you as to which activities to do with your loved one.  Maybe write a ‘top 10′ card with things about your loved one, sort of a mini-memoir, to help you think of things to do with them.

Go through old boxes (cleaning out) with your loved one, is a great way to reminisce and be productive.

Take pictures of things you won’t keep and put them in an album by category (former residences, vacation souveniers, etc.)

Write letters of appreciation together for community services and businesses.

Share or play music together for an hour every day.

If your family member is in a facility, make sure they have access to a personal music source in their room.

Develop a new daily ritual like afternoon tea or happy hour.

Maybe engage some old memories or former places your loved one used to live into your rituals or reminiscences.

Look up places online where they used to live

Stream museums they have been to – or wish they had visited

Stream opera or other performances that connect with their history.

Get out in nature for some vitamin D, exercise – even if you can’t walk, sit on the patio and soak in some sun.

If your family member is in a facility, ask caregivers to be sure to get your family member outside.

Maybe do Facetime with them, even while they are out for a stroll.

Lakelyn – Caregivers have some fear now about their health and their loved one’s health.  A recent survey showed:

– nearly 3/4 of dementia caregivers were unsure what would happen if they were unable to care, and

– 2/3 didn’t know what to do if their loved one became ill.

David – Statistically, caregivers are more likely to become ill and/or die before the person they are caring for.  Everyone should have a Plan B.  Fortunately, dementia is a slow moving illness, so caregivers do have time to investigate who would step in if you become ill.  Now is the time to put some thought into this, especially if your family member is in a facility and you are unable to visit.  You probably have the time to make a Plan B, now.  Socialization is the best treatment for dementia, depression, etc. and asking others is a good place to start your investigation into what others are doing for a Plan B.  So get out there and talk with people about stepping into your shoes, if you should become ill.

If you are not already, make use of day programs or place your loved one in a facility to relieve your caregiver burden is sometimes the best thing you can do for your loved one.  Caring for your own health means you can look after your loved one longer.

Remember, the Alzheimer’s Association has a Helpline available 24/7.  You can call them to relieve stress as a caregiver and ask them to give you a start on your Plan B.

Lakelyn – How about some more suggestions for engaging with your loved one at home?

David – If you do not live with your loved one who has dementia you can visit 6′ apart.  You will have to explain and remind about the quarantine.  Most care facilities will not permit visiting at this time.  Pretty much everything we do together can be adapted by using technology, particularly Zoom, WhatsApp, Skype, Facetime, Webex, etc.

Read aloud, share family news, have a chat

Ask your loved one’s opinion about whether to keep or toss items in a wardrobe, closet or attic

Share music and/or sing together

Do yoga, tai chi, or other exercise/meditation

Play games (blackjack, Yahtzee, Monopoly, Clue, etc.)

Lakelyn – Technology is huge right now.  I came across an article about using apps with people who have dementia.  It categorized apps for different uses.  I love Grandpad.

[Lakelyn didn’t provide a link to the article she mentioned, but I found an article online which categorizes “25 Useful Apps for Dementia Patients and Carers,” at: uksmobility.co.uk/blog/2016/07/25-useful-apps-for-dementia-patients-and-carers/]

Low-tech socialization, like drive-by visits with cheers and music to greet family members whom you cannot get physically close to.

David – Self care looks different for everyone, but all caregivers need to find out what respite they can do for themselves now.  These are the proven methods for reducing stress:

Get outside


Meditate – Doesn’t have to be formal, just sit in the garden for 5 minutes and breathe

Connect with old friends or family (cards/letters, phone, video chat, email, text, in person 6’ apart)

If you’ve had difficult relationships with family members, or a row with a friend, consider forgiveness

Sometimes, when someone develops dementia, they have forgotten the bad history and you can reconnect without that baggage in the way – at least from their perspective

Laughter (any source: sitcoms, internet memes)

If you have been disconnected from caregiving for someone in your family, consider getting more involved when the shelter-in-place is lifted.  Connect with that person’s primary care partner now to work out the place where what they would find helpful overlaps with what you are able/willing to do to help.

Appreciate those who are still doing hands-on caregiving, whether it be family, in-home carers or facility staff.


Q:  Mom temporarily living with daughter and has sundowning, is swearing and upset.

A:  Google ‘sundowning’ for some tips. When you have dementia, your day is exhausting. Plan for a late afternoon snack, ice cream, tea party, easy activity/craft do distract your Mom.  Turn on lights to prevent shadows.  Declutter your home.  Encourage a short afternoon nap.

Q:  As a caregiver, I want to wear masks and gloves but feel it may cause fear in someone with dementia.

A:  Stand 6′ away and reveal your face while you introduce yourself, put it back on before you move closer. Explain that the doctor wants you to wear PPE because of the quarantine.

Q:  How do I help my loved one to understand what’s going on with the quarantine and why we can’t get physically close?

A:  Everyone with dementia is different. Some will understand, others won’t. Some will remember for awhile, others won’t.  Wear PPE and explain why you aren’t hugging, etc.

If you live with a senior or other person who is at risk for serious illness if infected with covid-19, you can designate a ‘sterile’ zone in your home where visitors must where mask and gloves or wash up before entering.  This can work especially well if you have two bathrooms in your home and a bedroom and/or sitting area for the at-risk person.

Q:  What to do when you have a loved one in a facility and you can’t visit. Some facilities are so strict, you can’t even send in things.

A:  Ask the facility to make Facetime, WhatsApp, Zoom, etc. opportunities available.  This doesn’t always work well.  Consider an old fashioned phone call.  Drop off favorite foods or care packages, if it is permitted.  People with dementia are more resilient than we give them credit for, especially if they have short term memory loss and don’t realize it has been weeks since they’ve seen you.

Q:  How to find online sessions to engage Mom in conversation or music?

A:  YouTube has a bunch to watch. Grandpad is a good tool to use with seniors. There are a bunch of free concerts, plays, museum tours, zoo cams, etc.  Invite your Mom to dress up and attend an ‘evening’ concert, then connect with Facetime and cue up something online.  Take a ‘vacation’ by Googling scenes from Hawaii, or elsewhere.  Create a restaurant in your home (print a menu, dress up, add light music, flower or candle on the table, etc.)

Q:  Dad has no hobbies and can’t get around well. Family struggles to engage with him.

A:  Apathy can be a symptom of dementia. If your father had always been more engaged in life, ask his doctor about depression. Tell him you need exercise so please toss ball with me.  Easter Sunday service online, please join me.  Cat or dog visit or brushing.  Spilled poker chips, please put them back in the tray by color.  “30 Things To Do in 30 Seconds or Less” is a chapter from David’s book.  The list is available online at: bestfriendsapproach.com/wp-content/uploads/2017/02/30-Activities.pdf.   Hand massage, opinion about clothes, wrapping gifts, going through catalogs to shop for a birthday.