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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Pat Summitt

Remembering Pat Summitt

28 Tuesday Jun 2016

Posted by Ann Napoletan in Advocacy and Awareness, Celebrities, Face of Alzheimer's, Grieving, Pat Summitt, Quotes, Saying Goodbye, USAgainstAlzheimer's

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alzheimers, dementia, Pat Summitt

pat_summitToday, our hearts are heavy with the loss of a legend – a loss at the hand of Alzheimer’s.

May Coach Summitt rest peacefully knowing she impacted countless lives during her time on this earth. What a tremendous coach, role model, and human being.

My mother was an avid follower of women’s basketball and a big fan of Pat Summitt. Both were beautiful, strong, vibrant, seemingly invincible women – and then came Alzheimer’s.

Attitude lies somewhere between emotion and logic. It’s that curious mix of optimism and determination that enables you to maintain a positive outlook and to continue plodding in the face of the most adverse circumstances.

Coach Summitt’s spirit and memory will live on, continuing to touch lives, empower women, and inspire people of all ages. We can honor her life and all the lives lost to Alzheimer’s by boldly continuing to fight this horrific disease. We must be resolute in our determination to #ENDALZ, and we simply cannot stop until the battle is won.

In the coming days and weeks, our hearts and prayers will be with the family, especially son, Tyler, as well as Coach Summitt’s many friends, colleagues, and former players.

Read more about Pat Summitt in this New York Times article and in this press release from UsAgainstAlzheimer’s.

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Guide to Evaluating Residential Dementia Care

22 Thursday Aug 2013

Posted by Ann Napoletan in A Place for Mom, Caregivers, Caregivers.com, Emeritus, Finding a Facility, Helpful Resources, Mom, Pat Summitt, The Early Years, Tips

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alzheimers, assisted living, dementia, long term care

Pat Summitt Foundation Guide

Kudos to the Pat Summitt Foundation for putting together this free 50+ page publication on evaluating long-term care options. 

Extracting my head from the sand

Long-term care decisions are among the most difficult you will ever face, and unfortunately it’s often a “baptism by fire” situation. That was certainly the case for us; my mom had been in the hospital and I’ll never forget standing in the hallway, numb, as the OT, PT, and social worker told me she couldn’t go home. Living independently was no longer an option. 

I shouldn’t have been caught off guard, but I was. Oh yes, I knew in my heart the day was coming, but I had buried my head deeply in the sand on the vast beach of denial. I didn’t know a darn thing about long-term care. Nothing.

So, with one week to find a facility and get Mom moved in, I dove in head first armed with — not much of anything. I had enlisted assistance from A Place For Mom, which helped immensely, but oh how I wish I’d had the Pat Summitt Foundation guide. This was all uncharted territory for me, and I learned as I went.

Business is business

While it would be lovely if everyone had their heart in the right place, the bottom line is – well, the bottom line. It comes down to dollars and cents, sales, and monthly numbers. All too often, the focus is on keeping the building full regardless of whether or not the facility can provide adequate care to meet the needs of potential residents.

In fact, a recent Frontline exposé on Emeritus Senior Living points out that facilities sometimes even seek out advanced dementia cases. Why? Well, those residents require a higher level of care, which equates to a higher monthly payment. And after all, it IS all about the bottom line, isn’t it? The facility may not be equipped or staffed to handle the care, but somehow that becomes secondary to filling the building. 

Asking the right questions

This is why it’s so very important to know exactly what to look for – and what to ask – when you’re evaluating options. The Summitt Foundation guide is divided into five chapters:

  • Dementia care options and services
  • Publicly available information about quality of care
  • Who to interview and what to ask
  • The value of observation
  • Strategies for being the best advocate you can be + list of additional resources

In addition, the e-booklet provides valuable interview guides specific to staffing, satisfaction surveys, chronic pain screening, and food service, as well as a worksheet for documenting observations. These comprehensive tools also include scoring guides and rationale to help you quantify your findings.

Eyes wide open

My nuggets of advice for families embarking on this journey:

  • Don’t wait until the last minute; start early so you’re somewhat prepared when the time comes.
  • Ask tons of questions and observe, observe, observe while you’re in the building.
  • Make unannounced visits at various times of the day/evening.
  • Talk to current residents and family members.
  • Listen to your gut – it will rarely lead you astray. If your instincts tell you something doesn’t feel right, trust yourself.
  • Download How to Evaluate the Quality of Residential Care for Persons With Dementia, by Sandra F. Simmons, Ph.D., John F. Schnelle, Ph.D., and Anna N. Rahman, Ph.D., and put it to good use!

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Tribeca Film Festival 2013 – Shining the Spotlight

23 Tuesday Apr 2013

Posted by Ann Napoletan in Advocacy and Awareness, Celebrities, Events, Inspiration, Pat Summitt

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It’s both wonderful and encouraging to know that two films featured at this year’s Tribeca Film Festival are helping to shine the spotlight on Alzheimer’s. This is the very sort of exposure we need to bring a critically important issue to the forefront, while giving it a human face and removing the stigma that comes with the disease.

The first, Pat XO, is a documentary produced by the great Robin Roberts. As I watched the trailer, I couldn’t help but smile. What an incredible idea to hand out video cameras to those closest to Pat Summitt and ask them to talk about this legend – the winningest coach in all of college basketball. I truly cannot wait to see this film! Coach Summitt is an inspiration in so many ways.

Also at Tribeca this year, the premiere of The Genius of Marian, a son’s intimate portrait of his mother’s struggle with Alzheimer’s.

John Anderson’s review for Indiewire describes the film as follows:

It’s remarkable film, not only for the obvious affection with which it was made, but as art. The downward trajectory of a woman in the grip of ever-worsening dementia provides only so many opportunities for visual storytelling. And while White and Fitch do have wonderful archival material to work with – their subject, Pam White, was a model, and the footage of her as a young woman sparkles in its poignancy. But for a great deal of the film, White is creating something out of imagery that occurs with a seeming randomness, but which ultimately coheres in a way that’s quite moving and singular: As well it should. Pam White isn’t a medical statistic, she’s a person with a history, albeit one that’s slipping away, at least from her.

Three cheers for Robin Roberts and ESPN, filmmaker Banker White, and of course the Tribeca Film Festival for bringing much needed attention to our fight.

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