Category Archives: Helpful Resources

Purple Angel: Who’s With Me??

29 Thursday Aug 2013

Posted by in Advocacy and Awareness, Helpful Resources, Support system

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ostrich-purple-angel-sticker

Norman McNamara is asking for volunteers to help take the Purple Angel worldwide. The UK is making great strides toward increasing awareness, and the Purple Angel has hit Florida thanks to Gary LeBlanc’s fantastic project.

Dementia Awareness Around Town

Now it’s time to make customer-facing BUSINESSES in the U.S. dementia aware.

Unless you’ve taken someone with Alzheimer’s or another form of dementia out shopping or to a restaurant, you can’t appreciate how challenging it can be. People just don’t understand, and we need to change that.

Those who come in contact with the public on a regular basis should understand dementia, recognize the signs, and know how to treat customers who have the illness with kindness, dignity, and respect. The Purple Angel campaign can help…

Enter OstrichUK

The wonderful folks at OstrichUK have given this project a massive boost. Thanks to Ostrich (ostrichcare.co.uk) tens of thousands of distinctive Purple Angel stickers and information posters are now available for distribution.

The idea is for customer-facing businesses to encourage dementia awareness in their associates by asking them to read an informational poster. Once the information has been shared, participating shops and restaurants will receive a special Purple Angel sticker to display in their window. When customers see that sticker, they can be assured the business is aware of the special needs of patrons who suffer from dementia.

Get Involved!

Are you willing to do a little bit of legwork to help spread the word in your town OR are you a business who would like to participate? The idea is very grassroots and beautifully simple – and just imagine the power of this campaign if everyone were to pitch in.

To order Purple Angel Dementia Aware stickers FREE, email hello@ostrichcare.co.uk. The stickers come in batches of 50 and are accompanied by informational posters and basic tips for sharing. Remember to include both your email and postal addresses in your request.

If you are a business who would like to become dementia aware and proudly display a Purple Angel in your window, contact me at anapoletan(at)gmail(dot)com for more information.

And Speaking From Experience…

Let’s do this. As someone who has personally experienced the discomfort and awkwardness of taking my mom out – even early in her illness – I can assure you the Purple Angel campaign will make a positive difference to many families!

Guide to Evaluating Residential Dementia Care

22 Thursday Aug 2013

Posted by 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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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!

Emotions, Milestones, and Change

16 Friday Aug 2013

Posted by in A Place for Mom, Advocacy and Awareness, Alzheimers.net, Blogging, Caregivers, Caregivers.com, Grieving, Helpful Resources, Life After Caregiving, Mom, Ruminations, Saying Goodbye

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That faceAh, it feels good to stop for a bit and just sit back and breathe. The past couple of weeks have been emotional. I’ve made some difficult decisions, felt some great triumphs, sobbed uncontrollably, and felt overwhelmed with joy. Wow, talk about a mixed bag. No wonder I’m tired! (((smile)))

Another Milestone

Yesterday marked the 8-month anniversary of Mom’s passing. Truthfully, I can’t believe it’s August, and I really can’t wrap my head around the fact that she’s been gone eight months. How can that be? It was just about a year ago that Rodney came to Eason House and sang that beautiful song to her… one of my favorite memories. So bittersweet.

It was the end of August last year when things started to decline rapidly. A year ago. Four months later, she was gone. The other night, I wrote a piece titled, And in the Final Analysis, for Caregivers. I struggled with it initially, and then the words flowed easily and freely, like clear crisp water trickling down a gentle stream … It took me to some places I hadn’t been since those absolutely dreadful last three weeks of her life. Ultimately, I think it speaks to where I am right now – in my head and in life.

A Change in Direction

And that brings me to a decision I made a week or so ago. I’ve been writing for A Place for Mom for a year now, and have enjoyed every second of it. The team out in Seattle has embraced me as part of their group and I’ve learned so much and grown a great deal as a writer. Perhaps most importantly, those same folks I’m pleased to call my friends have given me the confidence to go forward and continue reaching out to others through my writing. It’s without question one of the most fulfilling things I’ve ever done.

But, all of that said, I’ve decided to step back and slow things down a bit. Yesterday’s Caregivers post was my last as a contract blogger for APFM. I hope to contribute as a guest from time to time, but I’m going to focus my attention on redesigning this blog and making it what I know it can be – a comfortable, compassionate place where families traveling this Alzheimer’s/dementia journey can come for support, solace, and information from someone who has been there.

A Note of Appreciation

So… all of that said, I hope you will continue to follow me here on The Long and Winding Road and spread the word to others who may be interested. In return, I will do my best to provide insightful posts from the heart, as well as the latest news, links to other valuable resources, and much more.

As I mentioned, I also hope to do some guest posts for APFM and others, so I’ll keep you “posted” (no pun intended) on that. In the meantime, I sincerely thank everyone who has taken the time to read my writing, whether here or over at Caregivers or ALZ.net. Being able to connect with other caregivers and family members has helped me through what has been a very difficult year. And just the fact that you care enough to keep coming back is beyond humbling…