• Home
  • Helpful Resources
  • Reading List
  • Recommended Blogs
  • Marilyn’s Legacy: A World Without Alzheimer’s
  • About Me
  • Contact Me

The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: A Place for Mom

PBS Next Avenue

18 Wednesday Sep 2013

Posted by Ann Napoletan in A Place for Mom, Alzheimers.net, Blogging, Care Options

≈ 1 Comment

Tags

assisted living, dementia, dementia village, Hogewey

logoMy friends at A Place for Mom and I are very excited to share a compilation piece recently published by PBS Next Avenue.

Welcome to ‘Dementia Village’ is based on several of our articles regarding a unique dementia care community located in Holland.

At Hogewey, residents have the freedom to roam about without restriction. They can visit with friends, shop for groceries, stop by a cafe for lunch, or just relax by the pond and enjoy a sunny afternoon. Nurses and caregivers, dressed in street clothes, are there to provide 24×7 care; however, the environment is far from “clinical.”

Sound interesting? You can read more in the PBS Next Avenue article, which can be found here.

Share this:

  • Share on X (Opens in new window) X
  • Share on Facebook (Opens in new window) Facebook
  • Share on Pinterest (Opens in new window) Pinterest
  • Share on Reddit (Opens in new window) Reddit
  • Share on LinkedIn (Opens in new window) LinkedIn
  • Share on Tumblr (Opens in new window) Tumblr
  • Email a link to a friend (Opens in new window) Email
Like Loading...

Coming Soon….and a Fabulous Read for Caregivers

29 Thursday Aug 2013

Posted by Ann Napoletan in A Place for Mom, Advocacy and Awareness, Blogging, Caregivers, Films, Inspiration, Life After Caregiving

≈ Leave a comment

Tags

alzheimers, caregiver, caregiver burnout, caregiver stress

Ah, it’s been a busy week and I’m already asking myself how in the world I was managing three weekly posts for APFM. For some reason, this week I feel like I’ve been running at hyper-speed yet have gotten very little accomplished!! wheel

I promise a review of Angel’s Perch by the weekend, so be sure and check back. It’s been two weeks since the Columbus screening, and I’m still hearing from people who thought the movie was just incredible!

In the meantime, I want to leave you with this wonderful article from Mark B. Perry for dnj.com. It’s been awhile since I’ve read something that hit home so deeply and on so many levels.

The original article can be found in its entirety here –> PERRY: Alzheimer’s takes its toll on those in daily battle

____________

Alzheimer’s takes its toll on those in daily battle

by Mark B. Perry

For those of you who have had an experience with someone with Alzheimer’s, you are fully aware of the toll it can take on you.

I recently saw pictures of soldiers that had been in Afghanistan; they were before and after pictures. It was obvious that the constant worry and stress of their situations as well as the loneliness of missing their loved ones back home, had taken its toll on them. It reminded me a bit of what I see in the mirror every day.

I know I haven’t had to go through the horrors of what our soldiers have gone through, and I haven’t had the stress of literally fearing for my own life on a daily basis, but in the mirror, I can see what a long drawn-out battle has done to me and the toll it has taken.

I can see it in the faces of people who are taking care of their parents and their spouses. The hours of furrowed brows and thousands of tears have etched and grooved and new landscape across our faces that no amount of smiles can smooth away. Just as gravity pulls at the body and ages it, so stress and worry weigh us down

We are at war; we are in a battle. We are fighting something bigger than ourselves that we cannot defeat. Our days are long and drawn out and we are forced to do things we never thought we could do mentally or physically.

We are fighting a disease that knows no enemies and has never been defeated. We fight to keep our loved ones safe from harming themselves, wandering off, or simply from falling down. We fight to keep them involved while fighting to protect their dignity. We fight our frustrations in them not knowing who we are.

We fight the urge to argue when they want to go home even though they are already in their own home. We fight to convince them to do the basics of daily life. We fight to keep it together when they tell us the same thing every five minutes.

We struggle daily with the guilt of our bad decisions and letting someone else help to take care of our loved ones. We worry when we leave them alone with caretakers that they will be watched after and cared for and that no one will show them their own anger and frustration. At night we lie awake and worry about the day we just had and how we will handle the next one.

But each day, we gear up and face the battle. We do it to protect our loved ones. We do it because we have to and we want to and we are scared to death not to. The toll it takes on us is great. As hard as we try, our minds never really wander away from our task at hand.

Just like a soldier that comes back from war, when our loved ones have passed away, we need time. We need time to re-adjust when it is all over.

We are battered, shell-shocked and tired, but in time, we will pick up the pieces and find the good to remember and take pride in knowing that we made a difference; we did our best, and even though probably never expressed, it was appreciated. No one can really understand unless they have been through it. We can’t expect them too. What we must do is continue to pursue a happy life that we know our loved ones would so desperately want us to have.

Once a year we all come out of the trenches for a moment, and we join together, we march, we walk. In over 600 towns across this country, we gather in groups and walk to show our support for all the work that is being done to fight this horrible disease.

If you would like to help and join forces in time, support or even with finances, you can go to www.alz.org and look for the Walk To End Alzheimer’s in your area. There are many teams from healthcare organizations, caregivers and families. For my mom, Ann Perry, we are www.thememoryjoggers.com.

Don’t be discouraged if you don’t have the funds to help out financially. There are other organizations that require nothing more than a click.

One great organization that is working hard to get the government to increase the funding for Alzheimer’s research is http://www.usagainstalzheimers.org.This is a powerful group that is really starting to make things happen by making our government understand the epidemic situation we are facing and the economic impact it will have on our future.

Another that I love is the grassroots campaign to get a postage stamp (much like the one for breast cancer) for Alzheimer’s. These type stamps have raised millions in the past. That site is https://www.facebook.com/HelpStampOutAlzheimers.

Whatever you can do, do it. Do it for those you love and do it for future generations so that years from now, the Walk to End Alzheimer’s will be nothing more than a distant memory.

Source: http://www.dnj.com/article/20130820/OPINION/308200013/PERRY–Alzheimer-s-takes-its-toll-on-those-in-daily-battle?source=nletter-news

Share this:

  • Share on X (Opens in new window) X
  • Share on Facebook (Opens in new window) Facebook
  • Share on Pinterest (Opens in new window) Pinterest
  • Share on Reddit (Opens in new window) Reddit
  • Share on LinkedIn (Opens in new window) LinkedIn
  • Share on Tumblr (Opens in new window) Tumblr
  • Email a link to a friend (Opens in new window) Email
Like Loading...

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

≈ Leave a comment

Tags

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!

Share this:

  • Share on X (Opens in new window) X
  • Share on Facebook (Opens in new window) Facebook
  • Share on Pinterest (Opens in new window) Pinterest
  • Share on Reddit (Opens in new window) Reddit
  • Share on LinkedIn (Opens in new window) LinkedIn
  • Share on Tumblr (Opens in new window) Tumblr
  • Email a link to a friend (Opens in new window) Email
Like Loading...
← Older posts
Newer posts →
© Copyright 2025
All Rights Reserved
The Long and Winding Road

Marilyn, BA (before Alzheimer's)

Contributor

Contributor

Recent Posts

  • The Latest Alzheimer’s Research Developments
  • National Caregivers’ Day: February 21, 2025
  • June 7, 2021: A Historic Day
  • UsAgainstAlzheimer’s National Alzheimer’s Summit: Don’t Miss It!
  • Happy 84th Birthday, Mom.

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 443 other subscribers

Archives

Blog Directory & Business Pages at OnToplist.com

Blog Stats

  • 139,410 hits

Meta

  • Create account
  • Log in
  • Entries feed
  • Comments feed
  • WordPress.com
stats for wordpress

Categories

Popular Posts

  • About Me
  • Thank you!
  • A Special Bond
  • Monday ... on Caregivers
  • Telling the Story
  • Hiding In the Canned Goods Aisle...and Other Stuff
  • Walking a mile in his shoes...
  • CGSN: Focus on YOU!
  • Look for me on VoiceQuilt!
  • Caregiving: Imperfections, Weaknesses, Acceptance, and Forgiveness

Recent Comments

  • Motherhood: Lost and Found, a Memoir of a Mother’s Alzheimer’s | The Long and Winding Road… (alzjourney.com) | Ann Campanella on Motherhood: Lost and Found, a Memoir of a Mother’s Alzheimer’s
  • Betty Trimble on Film Review: Angel’s Perch
  • Carol on Caregiver PTSD: Fact or Fiction?
  • (3) Ritamae Reichardt on When Caring Takes Courage: A MUST HAVE Caregiving Guide
  • Mary Jo George on June 7, 2021: A Historic Day

Pages

  • 2013-2014 News Archive
  • Helpful Resources
  • Latest News & Events
  • Postmaster General Letter – Alzheimer’s Semipostal
  • R E S I S T Resources
  • Reading List
  • Recommended Blogs
  • About Me
  • Contact Me
Coming Soon!
Marilyn's Legacy: A World Without Alzheimer's, Inc.
Stay tuned!!

Blog at WordPress.com.

  • Subscribe Subscribed
    • The Long and Winding Road...
    • Join 443 other subscribers
    • Already have a WordPress.com account? Log in now.
    • The Long and Winding Road...
    • Subscribe Subscribed
    • Sign up
    • Log in
    • Report this content
    • View site in Reader
    • Manage subscriptions
    • Collapse this bar
 

Loading Comments...
 

    %d