“Nothing Could Prepare Me for Watching My Wife Slip Away” (NYT)

This is a sweet guest essay in today’s NY Times by Tom Coughlin, a two-time Super Bowl-winning head coach. He writes about caregiving for his wife Judy, with a diagnosis of progressive supranuclear palsy (PSP). The essay is about the difficulties of being a caregiver (not about PSP).

Excerpt:

After several years of doctors trying to pinpoint the disease that has been slowly taking her from us, Judy was diagnosed with [PSP] in 2020. It is a brain disorder that erodes an individual’s ability to walk, speak, think and control body movements. It steals memories and the ability to express emotions and, sadly, is incurable. … Admittedly, transitioning from being with an N.F.L. franchise to full-time caregiver wasn’t easy. It’s still not easy. The playbook is either changing by the minute or so numbingly repetitious, you lose track of time and self. … [To] all those who are caring for a loved one, take a break when you need it and don’t be too hard on yourselves. It’s not easy. And for all those wondering how they can help, it’s simple: Don’t forget about the caregivers.

Read the full article here

Opinion: Guest Essay
Nothing Could Prepare Me for Watching My Wife Slip Away
Aug. 24, 2021
By Tom Coughlin
New York Times

And read a commentary by the opinion editor of the NY Times here

Opinion
He Won Super Bowls. Now He’s a Full-Time Caregiver.
Aug. 24, 2021
By Kathleen Kingsbury, Opinion Editor
New York Times

Gadgets, equipment, and supplies for mobility, safety, incontinence, mealtime, etc.

Brain Support Network and Stanford co-hosted a virtual meeting on Sunday, June 27. Attendees were invited to share “gadgets” (equipment, tools) they find useful in caregiving for family members with Lewy body dementia, progressive supranuclear palsy, multiple system atrophy, corticobasal degeneration, and Parkinson’s Disease. Gadgets fell into various categories, including:

– Mobility
– Safety
– Incontinence
– Meal-time
– Medication management

Here’s a spreadsheet (posted to Google Drive) we prepared with info on all the items shared:

>> Spreadsheet

Here’s the recording of the meeting, where many of the items are shown (in a show-and-tell fashion).

>> Video

Notes about the meeting will be coming soon!  Keep your eye on this blog post!

Robin

 

“Can Caregiving Cause PTSD?” (NextAvenue)

This is an interesting article from NextAvenue (nextavenue.org) on post-traumatic  stress disorder (PTSD) being caused by caregiving.  Advice given to family caregivers includes:
  • Don’t put the brakes on your personal life and feelings.
  • Be aware of your thoughts and your feelings.
  • Take regular breaks, even a short walk or enjoying personal time alone.
  • Get some help, from an aide or respite care.
  • Have a healthy diet, get adequate sleep, get regular exercise, enjoy nature, and engage in pleasurable activities.
The full article is copied below.
Robin

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CAREGIVING

Can Caregiving Cause PTSD?
What experts say and what role the pandemic is playing

by Juana Poareo, Freelance Writer
August 21, 2020
NextAvenue

Kaci Smith, 36, recalls the gradual emergence of her PTSD symptoms about three years ago when she’d been caring for her mother at home following her mom’s 2012 stroke.

“It would be things like almost feeling like a panic attack,” says Smith, a Rochester, N.Y. teacher. “If she would complain of leg pain, I would think, ‘Oh, no. It’s a blood clot. We’re going to have to go through all this medical stuff again.’”

Smith, who stopped working when COVID-19 forced the U.S. into lockdown, has been a 24/7 caregiver for her mother during the pandemic and is on anti-anxiety medicine.

As the “Caregiving in the U.S. 2020” report from AARP and the National Alliance for Caregiving documented, being a family caregiver can be high stress. It can also, in some cases, bring on PTSD (Post Traumatic Stress Disorder), an anxiety disorder caused by trauma. PTSD symptoms typically range from flashbacks and recurring dreams to insomnia and poor concentration.

Researching the Caregiving PTSD Link

Exactly how often caregiving can lead to PTSD is unknown.

“There remains very little research or attention on PTSD among caregivers,” says Dr. Ranak Trivedi, an assistant professor of psychiatry and behavioral sciences at Stanford University.

But, Trivedi adds, “As clinical psychologists, we are also recognizing that chronic stress that is unrelenting — such as through caregiving — can lead to PTSD.”

Jennifer McAdam, an associate professor in the School of Nursing at Samuel Merritt University who co-authored a study about family caregivers of ICU patients, says more research needs to be conducted to establish the true impact of caregiver PTSD.

“It is difficult and challenging to get money to study families as this area is typically not considered a high priority in research,” McAdam says.

The Pandemic’s Effect on Family Caregivers

The pandemic may well be making PTSD among caregivers more common.

A recent Centers for Disease Control and Prevention (CDC) report said the rates of symptoms of anxiety disorder and depression, as well as serious consideration of suicide, have been much higher for unpaid family caregivers than the public in general lately.

PTSD symptoms can also emerge for caregivers when a person receiving care has a chronic illness or disability, like Smith’s mother.

COVID-19 has put a stop to in-person social interaction for Smith and her mother. Before the coronavirus spread, Smith’s brother would visit regularly. No more.

“It’s just made my world very, very small,” Smith says.

What Can Trigger PTSD for Caregivers

Whether you’re prone to develop PTSD due to caregiving depends largely on your emotional and physical resilience.

For example, if you suffered from anxiety or depression before caregiving, you’re more likely to develop PTSD symptoms than someone who doesn’t have those conditions. And if you struggled with trauma in the past or are suddenly thrown into a caregiver role without preparation, experts say, caregiving can lead to PTSD symptoms.

Life experiences can adversely affect caregivers, too, including their socioeconomic status, divorce or the death of a child or parent. The more unresolved loss or trauma, the more likely a caregiver will carry extra stress. That’s been true for Smith, who lost her father when she was 12.

“Part of my PTSD also is around abandonment. I think that’s why, with my mom, it [PTSD] definitely gets very triggered when it comes to her health,” Smith says. “She’s also been suffering from cardiovascular disease since I was ten, so even though I became a full-time caregiver at twenty-seven, her health has been something that we’ve been struggling with my whole life.”

Another potential factor for PTSD among caregivers: a lack of family and community support. According to a BMC Psychiatry article, reliable support can make the load more bearable for a caregiver under severe stress.

Advice for Family Caregivers

Navigating a whirlwind of emotions as a family caregiver can be draining. It’s all too easy to put the brakes on your personal life and feelings, but that’s unwise and could be unhealthy.

“Even if you feel like you don’t have time to do anything, be aware of your thoughts and your feelings,” Trivedi says. “Honor those and know that those are real and true.”

Taking regular breaks can help, too. Even a short walk or enjoying some personal time alone can be enough to recharge your batteries.

You may also want to look into getting some help, either from a home health aide or respite care. State and local programs may pay for this kind of assistance. And if the loved one you’re caring for is on Medicare, that federal program might cover this kind of support, too.

Trivedi says these services “often go unused because people don’t realize they can use” them.

A healthy diet, adequate sleep, regular exercise, enjoying nature and engaging in pleasurable activities can be useful, too.

————————

Juana Poareo is a freelance writer and blogger in New Mexico who specializes in writing about health. She has worked with HuffPost, Saatchi&Saatchi, OncoLink, MBLM and Ambrosia Treatment Center. Her website is JuanaWrites.com.

“7 Ways Family Caregivers Can Combat Compassion Fatigue”

Compassion fatigue is the physical, mental, and emotional exhaustion that can come from caregiving.  It can reduce our effectiveness caring for our loved ones and ourselves.

This is a good article on how family caregivers can combat compassion fatigue:

www.nextavenue.org/7-ways-family-caregivers-can-combat-compassion-fatigue/

7 Ways Family Caregivers Can Combat Compassion Fatigue
Guidelines from an expert who’s also had personal experience
By Stephen Chee
NextAvenue
August 18, 2020

The author says:

The most effective mantra to surmount compassion fatigue? Don’t be your own worst enemy. Instead, be your own best friend. Speak kindly to yourself and give yourself grace. When we befriend ourselves, we can love and serve others more abundantly.

The seven guidelines described include:

  1. Take Care to Give Care.  Many family caregivers have trouble asking for help. … Yet if we fail to care for ourselves first, we will be ineffective in caring for others.  Remember these three principles: We must receive before we can give; we must learn not to put ourselves last and we must be kind to ourselves by taking time to rest, recharge and recover.
  2. Plan Each Day.  In caregiving, it’s a four-step process:  
    * Choose your planning medium.
    * Schedule a one-hour weekly planning session.
    * Block off time for each daily activity beyond caregiving, such as maintaining your work schedule, shopping, exercising, sleeping, having quiet time, nurturing your spiritual practices, keeping doctors’ appointments and spending time with family and friends.
    * Be flexible and realistic, leaving room in your life for unexpected events.
  3. Cultivate Emotional Intelligence.  [This includes] self-awareness, positive outlook, self-control, adaptability and empathy.  Empathy is needed not only in caring for others, but in loving and forgiving ourselves.
  4. Follow the Caregiver’s Bill of Rights
  5. Build Your Support Network
  6. Seek Physical, Mental and Emotional Recovery
  7. Celebrate and Have Fun

Check out the full article for more details.

Robin

In-home Activities While Sheltering in Place – UCSF Caregiving Webinar Notes

In response to the covid-19 outbreak and shelter-in-place orders, the UCSF Memory and Aging Center (MAC) hosted a weekly caregiving webinar series in April 2020.  These webinars are focused on providing information and resources to caregivers spending more time at home with their loved one and less caregiving support than usual.

The second webinar presented on April 8th was on the topic of “In-Home Activities While Sheltering in Place.”  A terrific RN at the MAC was the main speaker — Sarah Dulaney, RN, CNS. She spoke for the first 24 minutes. There was also a family caregiver speaker. As we didn’t find the family caregiver’s remarks so interesting for the atypical parkinsonism audience, they aren’t included in this blog post.

Ms. Dulaney’s main advice is to: Choose activities that can help reduce stress in your home because stress is contagious from caregiver to care receiver. In this webinar, she offers lists of activities that might be rewarding, relaxing, distracting, refreshing, or providing a social connection.

If you are home with your family member with no respite, pace yourself! Ms. Dulaney offers some advice in this situation:

  • Apathy, decreased attention, irritability, and daytime sleepiness are common barriers to engagement
  • Try shorter, more frequent episodes of activity (5-15 mins)
  • Find ways to connect through activities of daily living (i.e., laughing, singing, conversation, touch)

Here are Ms. Dulaney’s resources related to activities:

Here’s a link to recording of the April 8th webinar:

www.youtube.com/watch?v=S1nQVYQdsVg&feature=youtu.be

At this link, you’ll find the recordings of all five caregiving webinars along with PDFs of the slides presented:

memory.ucsf.edu/covid#caregiver-webinar

Thanks to Brain Support Network staff member Denise Dagan for attending the webinar, and sharing her notes.  See Denise’s notes below.

Robin

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

In-Home Activities While Sheltering in Place
Webinar hosted by UCSF Memory and Aging Center
April 8, 2020
Presenters:  Sarah Dulaney, RN, CNS and Pam Roberts, caregiver
Notes by Denise Dagan

What to do when stuck at home ALL DAY EVERY DAY?

Choose activities that can help reduce stress in your home because stress is contagious from caregiver to care receiver.  Stress can make caregiving more difficult as it will manifest in difficult and uncooperative behaviors, especially in those who suffer from dementia.  To reduce stress in your home:

  • Stick to a routine
  • Take one day at a time
  • Do your best
  • Be gentle with yourself
  • Prioritize connecting with others

How do activities affect your mood and energy level? Do things that regulate the neurotransmitters in your brain, or activities that are:

  • Rewarding
  • Relaxing
  • Distracting from negative thoughts and stress
  • Refreshing to your energy level
  • Connecting with others, socially

Rewarding activities reinforce a sense of purpose and accomplishment. Try to get the person you care for to help with these activities:

  • Work
  • Helping others
    • Caring for others can feel rewarding
    • Find tasks to make a care recipient feel they are helping
      • Help around the house
      • Give caregiver a back rub
  • Cleaning and household chores
    • sweep, rake, dishes, laundry
    • care recipients may need cuing or assistance.  They may not do tasks perfectly, but it makes them feel helpful/useful.
  • Home improvement projects
    • cleaning out closets
    • sorting clothes, photos, books, magazines
  • Cooking or baking
    • peeling, chopping, stirring, set the table, take things to the table
  • Gardening
    • even houseplants
  • Caring for a pet, or fostering animals
  • Creative arts or craft project
    • taking photos, baking together, arranging flowers, coloring mandalas
    • use found objects or recycled items (twigs, rocks, toilet paper rolls) if you have few or no craft supplies
    • take a photo of your project and share with friends and family
  • Puzzles and games
    • Springbuck brand 36 piece jigsaw puzzles with adult images
  • Learning a new skill
    • new language, song, exercise or hobby – doesn’t have to be ambitious to be rewarding

Relaxing activities ease tension and emotional arousal in the mind and body:

  • Mindful awareness or deep breathing
  • Meditation, mantra or prayer
    • Metta Meditation:  “May I be happy, may I be well, may I be safe, may I be at peace, may I be at ease.”
    • Repeat mantra wishing others the same
  • Nature walk, scenic drive, window watching or nature videos (TV, youtube)
  • Drink tea or other beverage in a mindful way (notice flavor, how it warms you, etc.)
  • Imagine a different reality
    • somewhere more pleasant, like a place where you vacationed.  Get out photos.
    • somewhere more distressing and be grateful that we are in a place that is relatively safe.
  • Warm shower or bath
  • Massage, hugs, holding hands, or cuddling with a pet
  • Wrapping up in a blanket, stuffed animal or soft stretchy or weighted blanked
  • Listening to music
    • choose a genre from the care recipient’s past
  • Eating chocolate

Distracting activities redirect our attention to something entertaining or amusing and away from the stress of news, worries and fears:

  • Manicure, hairstyling and dress-up with hats or jewelry
    • Take pictures or do a video call to share the experience
  • Magazines, books (read to them), coloring books, trivia, telling jokes, sharing memes
  • Video call with family or friends
  • Singing karaoke
  • Playing simple games like Jenga, blackjack, dominos or bingo
  • Digital games like solitaire, sudoku, crossword or Microsoft Flight Simulator
  • Classic movies or sitcoms, sports, cooking or home improvement shows, animal cameras, nature videos
  • Virtual museum tours, live-stream (opera, symphony, zoo, safari, Winchester Mystery House) online classes or lectures

Refreshing activities renew our strength and energy:

  • Exercise
    • Online videos
      • Silver Sneakers
      • NIH Go4Life Workout Videos
    • Put on music and dance
    • Walking
    • Chair sits, wall push-ups, etc.
  • Creative projects
  • Spiritual practices or rituals (walk in nature, honor religious traditions)
  • Reflect on and reaffirm your goals & values

Connecting activities build and deepen relationships

  • Reminisce, listen and tell stories
  • Find meaning in the mundane
    • Family recipes or food preferences
    • Quirky sayings of habits of friends and/or family members
  • Record meaningful moments on video
    • It will be nice to have these when the person you care for passes
  • Apologize
  • Forgive or let things go – over the phone, by video, write letters or email, journal to forgive those who have died
  • Use “love language”
    • Encouraging words (like compliments or appreciation), gifts, acts of service, physical touch
    • Find ways to be kind to each other and spend quality time together

(Resources for the above list: Gary Chapman, “The Five Love Languages,” 2015 and Ira Byock, “The Four Things that Matter Most,” 2014.)

Connect remotely:

  • Phone calls and texts
  • Covia’s Well Connected (senior center without walls, armchair travel, etc.)
  • Virtual/Zoom support group (through Alzheimer’s Association)
  • Letters or postcards
  • Social media (Facebook, Instagram, NextDoor, WhatsApp)
  • Video call technology (FaceTime, Skype, Zoom Google Duo, Amazon Alexa Show)
    • Consider how to get the most out of the connection.  
    • If the person you contact is unable to speak, share music with them or keep it short and tell them you love them
    • For those more cognitively aware be creative, get grandchildren involved (put on a play, read to each other, etc.)

Pace yourself if you are home with your care recipient without respite:

  • Apathy, decreased attention, irritability, and daytime sleepiness are common barriers to engagement
  • Try shorter, more frequent episodes of activity (5-15 mins)
  • Find ways to connect through activities of daily living (i.e., laughing, singing, conversation, touch)

Share your own tips and ideas!

  • Electronic Wonder Bible or audiobook bible
  • Animated/robot ‘stuffed’ animals (Joy For All Dog)
  • Jigsaw puzzles (high contrast color makes puzzle pieces easier to see)
  • Video calls with family/friends

Let’s Review

  • Do your best, and be gentle with yourself
  • Consider activities that might be rewarding, relaxing, distracting, refreshing and connecting
  • Observe, adapt and simplify
  • Explore behavior as communication

Resources

Questions-and-Answers

Q. Person with FTD who used to be outdoors-y and now can’t go to gym.

A. Try a recumbent bike or virtual personal training with home gym equipment.  Of course, you can still take them outside with supervision.  Social distancing is more likely to happen on bicycles. Go see if trails he enjoyed are still open and how crowded.  Try to find one you can still take him to.  Even just walking around the block twice a day would be helpful.

Comment: Make face masks with the person you care for.

Q. Is there such a thing as too much TV?

A. Yes, limit how much the person you care for watches the news.  Perhaps you can listen to the news through head phones to limit how much news they hear.  There is too much TV if if results in too much sitting.  You can get very involved conversationally by watching something like live streaming zoo animals or programs you both enjoy and talk about.  Especially older programming like Murder She Wrote, M*A*S*H, etc. that is familiar to you.  Religious services can be very meaningful for some people.  Be sure to take time to get up and move around.

Q. Barriers to engaging in activities, like apathy.  How to motivate?

A. This is a very common challenge.  Adjust your expectations.  Maybe it is a success to get the person you care for to get off the couch and come to the dining room or patio for a meal.  Try asking them to do something gentle at first, like sit on the porch, go for a drive, etc.  Sometimes, if you ask them if they want to do something you will get an automatic NO without them even thinking about what you said.  Try asking them to help you (take out the trash) or join you (for a walk).  Once you get them in the car their interest may be heightened.  Using rewards can get someone moving.  Show them a treat to get them moving.  Move the treat forward to keep them moving.  Promise a treat when a task is completed.

Q. How to remind someone of social distancing rules, proper hand washing, etc.

A. Wash your hands with them.  Provide verbal cues to remind them what you want them to do.   Example: someone with dementia approaching animals or children while out.  Solution: hold their hand to remind them.  Intervene and suggest taking a photo of the animal or child, rather than touching, may be a satisfying substitute for touching.

Q. Day programs running at reduced capacity is still dangerous to the attendees health.  Safety of taking seniors shopping, etc.

A. You can speak with the program’s management about how they are monitoring the health of staff, even if staff is keeping attendees apart.  Be sure to express your family member’s co-morbidities so everyone is aware of the level of protections needed to keep them healthy.  If you have in-home caregivers, be sure personal protective equipment is available to use in your home.  There are guidelines on the CDC’s website.  It is best to have groceries, etc. delivered.  If you can’t manage to arrange for this online, reach out to family, friends, clergy to ask them to deliver necessities to your home.

Q. Bedridden person and activities.

A. Playing music, reading aloud, massage (even just hands and feet), reminiscing with photos, relating family news, engage tactile sensations like a pet or stuffed animal.  Don’t forget their spiritual practices, if that is relevant to the two of you.  Reach out to people who know you to get support with your frustrations and for more ideas.