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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Caregivers.com

Emotions, Milestones, and Change

16 Friday Aug 2013

Posted by Ann Napoletan 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…

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Week in Review…

10 Saturday Aug 2013

Posted by Ann Napoletan in Alzheimers.net, Blogging, Care Options, Caregivers, Caregivers.com, Emeritus, Helpful Resources, Mom, Neglect and Abuse, The Early Years, Tips

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alzheimers, assisted living, dementia

week-in-reviewHaving spent the last two days in bed slathered with Vicks and sleeping in a Nyquil-induced haze, I’m starting to feel human again. What a miserable couple of days it’s been.

I guess I feel like I’ve been a little out of sorts since the Frontline piece on Emeritus aired; it brought back memories I’d rather forget. And yes, years later, I’m still so angry at myself for trusting the staff at Outlook Manor the way I did. How I hope Mom knows I did the best I could at the time with the knowledge I had. There are no second chances in matters like this, but the opportunity remains to educate people so they won’t make the same mistakes… at least that’s something.

What in the World is Dementiaville?

This week on Alzheimer.net, I did a piece about Hogewey Village (aka Dementiaville) in the Netherlands. How wonderful it would be to imagine that someday, care like this could be available all over the world. Right now, the biggest barrier to adoption is one we’re all too familiar with – cost. It took a cool $25 million-plus to build Hogewey, not to mention the astronomical cost of running it.

Still, it’s not something we should immediately dismiss as impossible. Perhaps there are aspects of this model that can be repeated on a less grand, but still effective, scale. The current model in the U.S. is in large part not working, and it’s our responsibility to figure out how best to take care of those who took care of us for so many years.

Dementia Dogs

Monday’s Caregivers post introduced readers to Kaspa and Oscar. These two dogs from Scotland have been specially trained to provide assistance to dementia patients, and the results have been overwhelmingly positive. In addition to helping with prompts,  reminders, companionship, and exercise, they also have a knack for sensing when a period of agitation is coming on, and they can often redirect their owner before things escalate.

Is It Time to Consider Assisted Living?

Also this week, I did a post on Caregivers calling out 8 signs that may indicate it’s time to start thinking about assisted living. Making that decision is one of the most gut wrenching things we’ll ever face, and when the time comes, it’s much easier to stick your head in the sand than face reality. Ask me how I know…

I hope that perhaps this list will allow you to step back and evaluate things a bit more objectively. The decision is extremely personal, and no two families or situations are the same.

Until You’ve Walked in Their Shoes….

Last but not least, this week I’ve seen several extremely harsh comments concerning placement in assisted living. I want to stress that, for a variety of reasons, not everyone is able to take care of loved ones at home. I find it terribly unfair to suggest that placing a spouse or parent in a care facility means they are loved any less. That is simply ludicrous. We must all do what’s best in our own situations.

Bottom line, never judge another until you’ve walked in their shoes. Although I do believe the system very much broken, there are without question some wonderful facilities that provide loving, compassionate care. Planning ahead is the best way to ensure adequate time for the due diligence necessary to find the right option for your family.

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Weekly Roundup

27 Saturday Jul 2013

Posted by Ann Napoletan in A Place for Mom, Advocacy and Awareness, Alzheimers.net, Blogging, Care Options, Caregivers, Caregivers.com, Events, Expectations, Family, Films, Finding a Facility, Grieving, Helpful Resources, Saying Goodbye, Signs and Symptoms, Tips

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animated_cowboy-cartoon

I honestly can’t believe it’s Friday again, and even more incredible is the fact that August 1st is just a few days away! Sometimes, I wish life would slow down just a bit.

Promotion for our Columbus screening of Angel’s Perch continues, and with 10 days left before our deadline, we’ve got 21 tickets left to go. I’m really hoping they’ll be reserved by the middle of next week… fingers are crossed. If you’re in the area and would like to join us for what promises to be a very special evening, you can reserve tickets here.

What’s Happening on ALZ.net?

Alzheimers.net is currently undergoing some exciting changes, so there was no post this week. However, stay tuned for an interesting piece on Alzheimer’s and turmeric coming soon. I learned a lot doing the research for this one and joke that now I’ll be drinking turmeric tea daily and following it with a coconut oil chaser…  (((smile)))

This Week on Caregivers

Did you know there are various conditions that can cause excessive confusion in the elderly? Not only can they exacerbate symptoms in dementia patients, but they can also wreak havoc on the mental status of individuals with no previous diagnosis. Learn about several of these issues and find out what signs to be on the lookout for in 3 Causes of Sudden Confusion in the Elderly.

Mothers Day_022On Thursday, I discussed the challenges of parenting your parent, providing tips on navigating the often rough and uncertain waters that come along with life’s ultimate role reversal. It’s not easy, but the sooner you begin to face the issues head on, the better. Preparation is so important. Read more in Parenting Your Parent: 6 Things I’ve Lived and Learned.

VoiceQuilt

Earlier this week, VoiceQuilt posted Memorial Ideas: Breaking Away From Tradition, a piece I recently wrote about creating a memorial befitting the person being honored. It’s a very personal decision, and different for every family, but the underlying point is, there is no “right” or “wrong.” ♥

Other Tidbits of Interest

I see so many articles each week, but today I want to share a few of the best from the past 7 days. There’s just such a wealth of wonderful information out there.

Martha Stettinius (Inside Dementia) featured a guest post by Ram Meyyappan, an expert on Social Security benefits. This piece does a great job of demystifying some of the benefits and eligibility requirements for dementia patients. Take a look at Dementia and Social Security Disability Benefits.

ghpThis week, NPR featured an enlightening and very relevant segment on The Green House Project, and it’s well worth listening to the clip. If you aren’t familiar with the concept, I guarantee after this 5-minute introduction, you’ll be sold on the unique alternative to traditional assisted living and skilled nursing.

Last but not least, Jeff Anderson from A Place for Mom did an informative article on how to check for assisted living violations. In 10 States that Make it Easy to Check Assisted Living Violations, he tells us what states do the best job of making sure this data is appropriately detailed, easily accessible, and updated frequently. If there’s one thing I’ve learned, it’s the importance of thorough due diligence; never choose a facility based simply on a tour of the building. Appearances are not necessarily what they seem and it’s critically important to research audit histories, make surprise visits, and speak to family members of current and, if possible, past, residents.

That’s about it for now – I hope you and yours have a lovely weekend and beautiful last few days of July. Until next time, carpe diem…

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Marilyn, BA (before Alzheimer's)

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