“Their Dementia Diagnosis Doesn’t Mean They’re Keeping Silent” (WSJ)

This terrific article from the Wall Street Journal in the fall of 2021 notes: 

“As the number of people with dementia grows, more of them are speaking out to challenge assumptions about what they can and can’t do.  A group of advocates, many in the earlier stages of this condition, say that people around them often struggle with understanding the full range of symptoms. …  Life expectancy for those with early-onset dementia varies. One 2019 study showed a mean survival time of 17 years after symptoms start and 10 years after a diagnosis.” 

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“Learning Spanish” – a Lewy body dementia caregiver’s story

This is a beautiful story written by Lyn Preuit, whose wife Wendy had Lewy body dementia (confirmed through brain donation).  Lyn is a long-time member of our local support group.  The story is captures part of Lyn’s caregiving journey and some of Wendy’s LBD symptoms, such as dementia, difficulty concentrating and multi-tasking, speech problems, and swallowing issues.

Robin

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“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 and Safety
– Incontinence
– Meal-time
– Dressing
– Voice and Mouth
– Medication management
– Exercise

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 from the meeting are below.  Thanks to BSN Board Secretary Mindy Lumm for taking notes during the rapid-fire exchange of gadgets!

Robin


 

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.
https://www.caregiverproducts.com/stand-a-roo-standing-aid-single.html

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
https://www.caregiverproducts.com/stand-a-roo-standing-aid-single.html

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:
https://www.amazon.com/Waterproof-Silicone-Washable-Clothing-Protector/dp/B07NV13GS9

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.


MEAL-TIME

(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.


DRESSING

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 

Stadium blanket

 

MEDICATION MANAGEMENT

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


EXERCISE

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.