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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: The Early Years

OstrichUK Guest Blog

13 Sunday Oct 2013

Posted by Ann Napoletan in Advocacy and Awareness, Blogging, Caregivers, Expectations, fear, Guilt and Regrets, Helpful Resources, Life After Caregiving, Mom, Ruminations, The Early Years

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alzheimers awareness, alzheimers story, caregiving, dementia, dementia aware communities, purple angel

ostrich-logoA huge thank you to OstrichUK for inviting me to be a guest blogger on their site this past Friday. I truly appreciate the opportunity and love everything this company is doing to help #ENDALZ.

Did you know that earlier this year, the wonderful folks at Ostrich donated thousands of window stickers and information posters to Norman McNamara’s Purple Angel campaign? Their generosity is helping to create dementia aware communities all over the world!

Here’s a link to my guest blog, a bit on the journey from denial to acceptance and the lessons learned in between. I hope it will strike a chord with other caregivers and loved ones, so please feel free to share Life After Caregiving.

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The Face of Alzheimer’s: Michael Ellenbogen

03 Thursday Oct 2013

Posted by Ann Napoletan in Advocacy and Awareness, Books, Early Onset, Face of Alzheimer's, Helpful Resources, Mom, Ruminations, The Early Years

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alzheimer's books, alzheimers, alzheimers story, dementia, early onset alzheimers

bookI recently read Michael Ellenbogen’s book From the Corner Office to Alzheimer’s and found this poignant account of living with the disease to be touching, heartbreaking, and eye-opening to say the least.

Ellenbogen, a former IT exec and self-proclaimed workaholic, was diagnosed with Early Onset AD in 2008. At that time, he was just 49-years-old and had noticed his earliest symptoms ten years earlier – before his 40th birthday. His forthright style helps us to understand what it’s like – from noticing the initial subtle changes, to trying to keep the wheels on the bus, so to speak, and live a “normal” life, to the search for a diagnosis, and beyond.

Yesterday, Ellenbogen wrote an enlightening post on katiecouric.com. When you have a few moments, pop over there and read My Name is Michael, and I Am Living with Alzheimer’s.

Stories like this not only serve to help crush the stereotype and stigma surrounding dementia, but they allow us – the family members, friends, and caregivers – to understand what it feels like to be that person.

In those early years with my mom, we didn’t know what was happening, and even once we did, we tended not to talk about it to avoid upsetting her. Maybe we thought if we buried our heads in the sand, it would go away. We spent years living in denial. I so wish we’d handled it differently.

Courageous people like Michael Ellenbogen who are willing to share their story are helping today’s families see that it’s okay to talk about it. In fact, it’s really only through talking that we have any chance of solving the problem…

Learn more about Michael by visiting The Michael Ellenbogen Movement on the web.

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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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Marilyn, BA (before Alzheimer's)

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