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).
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
He Won Super Bowls. Now He’s a Full-Time Caregiver.
Aug. 24, 2021
By Kathleen Kingsbury, Opinion Editor
New York Times
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 and Safety
– Voice and Mouth
– Medication management
Here’s a spreadsheet (posted to Google Drive) we prepared with info on all the items shared:
Here’s the recording of the meeting, where many of the items are shown (in a show-and-tell fashion):
Notes from the meeting are below. Thanks to BSN Board Secretary Mindy Lumm for taking notes during the rapid-fire exchange of gadgets!
Gadget Meeting (virtual)
June 27, 2021
Co-hosted by Brain Support Network and Stanford Parkinson’s Community Outreach
Notes by Mindy Lumm, Brain Support Network Board Secretary
MOBILITY AND SAFETY
(Marnie) Ustep Walker – watch videos on their website, helpful. Weighted on the bottom and wide base. Default position is brakes on – helpful when walker tends to run away or unsteady. Can turn up resistance if it’s too loose. Not as easy to cart around, but very stable.
(Marnie) Pivot Disc – when person can still bear weight but has trouble with a transfer. Helps to turn into wheelchair or other. Caregiver needs to use their foot to stabilize and do the pivot. Not recommended for them alone or unstable (toilet). They make one with a handle – Marnie has 4 so one is available where needed. Easy to kick away as needed.
Gait Belt – Strapped around upper chest – one hand in the back of the belt to move body and stabilize. Doesn’t always prevent a fall but allows to bring them down more slowly and safely. Can also be used on the waist.
What SUV cars are best for getting folks in and out of? Nissan Murano – still difficult, had to use a stool. Nissan Sentra is much easier. Handle for the car door can be useful – careful of the fit for stability.
(Keith) Bed cane: Piece of plywood that slips under the mattress and belts to the mattress with a handle. Feels secure (psychologically) – little tricky to install but helps feel more secure about getting in and out of bed.
(Pat H) Under cushion sofa grab bars. Very similar to the bed cane, bed rail supports person.
Chair or Bed Alarms – good if your loved one doesn’t want to wake you, lets you know they are trying to get up. Bed alarms come in various sizes. One person’s (Robin’s) is wireless and interfaces with monitor, knows if patient gets up. Pads do have a lifespan of 1 or 2 year, so watch for battery or pad needing replacement.
(Joyce) Elderly bed rail with attached bear bell, can hear that bar was grabbed.
Video Baby Monitor – used with a camera and audio, can aim it (Infant Optics) or use a wide angle. Recommended by support group member.
(Chuck) Cloud Baby Monitor (app on phone or ipad) – allows to hear and see for free. If you must step out of the house, can connect to internet for small fee – can talk back if that doesn’t scare them. Cloudbabymonitor.com
(Dianne) Soft inflatable u-shaped for wheelchair – reminder to stay in chair versus an active restraint.
Remote controlled lift – expensive, $2K, from Norway. Margo showed at a previous meeting, used to get her husband off the floor after a fall.
(Candy) Calling non-emergency fire for help with falls. Recommend putting that number by the phone.
(Tiffany) EMS recommended a flat gurney for falls, also one with a seat only takes 2 people.
(Denise) Liberty Lift Standing Aid: Handle on each side, allows person to pull against and lift up off a chair.
Power Toilet Lift Seat – liftseat.com
(Robin) SuperPole with a trapeze
Garbage bag trick – easy to turn and position! Beaded car seat covers are also recommended for ease in turning.
HYGIENE AND INCONTINENCE
Bidet – brondell.com
Urinal for men – plastic, cheap, spill-proof
Purewick for female?? One person (Tiffany) investigating from TV ad
Unisex disposable urine bag – traveljohn.com – good for traffic, hiking, etc. too!
Depends for Men – husband says they leak, uses 5 or 6 without saturating them. Make sure to use the proper size, can add an extra pad inside that may help with feeling of leaking. Poise – “booster” or flow-through. Makes a difference how you are sleeping as to where the booster pad is placed.
Condom catheter – Hollister brand mentioned by one person (Robin): come in sizes, bag and tube connect on the condom so urine drains into the bag (either a leg bag or a hanging bag on the bed). Retracted penis pouch if condom catheter doesn’t work well is another option. Medicare paid for 30 per month – very inexpensive.
Disposable pads for around the toilet: https://www.webstaurantstore.com/23-x-22-gray-disposable-toilet-floor-mat-imp-1550/9991550G.html (look on Amazon if your toilet has a round front) – works wonderfully and lasts a while. One person (Joyce) recommends too, helps husband know where to position feet as well. Has a fragrance to help with odor. Better than washable rugs where the backing deteriorates.
Quilted, washable pads for the bed – many sizes, can go under the fitted sheet or over – clean up well with bleach. Can double as a method to help move or reposition.
(Dianne) Spoon/utensils with a large handle so it’s easier to grip. Plates with an edge where food doesn’t fall off the plate – quiche dish or tart pan. Clothing protector was very helpful (don’t call it a bib!!), or an apron for eating.
Waterproof adult bib:
Women and incontinence – recommend Depends, Purewickathome.com, Poise pads. There are bedside urinals for women, or bedside commodes.
Pre-moistened, disposable washcloths – throw in the microwave for 30 seconds to warm up, good alternative when showers are dangerous/difficult. Rinse-free. Brand: Sage. Also have a shower cap with no-rinse shampoo.
(Marnie) Food thickener; it matters which one you use. Started with a cheap one from the store, made with modified food starch. Speech pathologist had better recommendations – Simply Thick, in liquid or powder. Want to look for xanthan gum. Nestle Resource Clear (not the starch) or Clear DysphagiAide. Helps when coughing a lot with thin liquids. Doesn’t quench thirst, so give water as well.
Hormel Thick and Easy Meals – pre-made, pre-thickened liquids, meals
Plastic Syringe for when opening mouth is harder, can use to give liquids/purees.
Device for getting pants/socks on – avoid balance issues: https://miracledressingaid.com/store/ols/products/miracle-dressing-aid-gen-811
Hands-free shoes: https://kizik.com/ Collapses back of the shoe so they can get foot in
Coiler laces – can transform shoes to slip on, no tying
Hero – pill organizer; 90 day supply, company coordinates ordering; interfaces on your phone with reminders. Handles up to 10 medications. https://herohealth.com/
MedReady dispenser with alarm – lockable
MOUTH and VOICE
MouthKote – spray helps with meds that are difficult with a dry mouth
Voice Amplification Options: Chattervox or Shidu – when projection is an issue, amplifies voice through speaker
Styrofoam Roller – widely available. If one person’s (Keith’s) wife lies on it before bed, makes a big difference with mood and ability to get up in the morning.
Stationary recumbent bike – popular as you can lay back, more comfortable position, get exercise and keep limber. Look for used bikes on local websites.
Pedal exerciser – budget model, use seated (adjustable resistance) – put against wall or use a weight. Can also use on a table for arms. Look for $30 version (too cheap – not as good). DRY brand. Keeps count, can set a goal.
- 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.
Can Caregiving Cause PTSD?
What experts say and what role the pandemic is playing
by Juana Poareo, Freelance Writer
August 21, 2020
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.
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:
7 Ways Family Caregivers Can Combat Compassion Fatigue
Guidelines from an expert who’s also had personal experience
By Stephen Chee
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:
- 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.
- 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.
- 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.
- Follow the Caregiver’s Bill of Rights
- Build Your Support Network
- Seek Physical, Mental and Emotional Recovery
- Celebrate and Have Fun
Check out the full article for more details.