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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Expectations

Alzheimer’s, Thanksgiving, and Expectations

21 Wednesday Nov 2018

Posted by Ann Napoletan in Caregivers, Expectations, Holidays, Mom, Ruminations, Tips

≈ 1 Comment

Tags

alzheimers, alzheimers holiday tips, caregiving, caregiving at the holidays, dementia, holiday stress, holidays with alzheimers, thanksgiving, thanksgiving with alzheimers

There’s one Thanksgiving that is forever etched in my mind for all the wrong reasons. Although it occurred eight years ago, in many ways, it feels like yesterday. When I think of the November holiday that I once looked so forward to, the first image that comes to mind is from 2010.

As I thought about writing this post and what tips I might offer to help you make the most of your holiday, I found myself overwhelmed. It took several days of contemplation for me to come to the realization that it really all boils down to one simple – yet extremely difficult – concept.

Expectations.

Weeks before that fateful Thanksgiving in 2010, I had unwittingly crafted an idyllic vision of how it would go. This wasn’t deliberate, but my subconscious went to work on how the day would unfold, what the preparation would look like, how the meal would come together, and most importantly, how my mom would be that day – her mood, frame of mind, level of agitation, ability and desire to participate, and all the other things that go along with Alzheimer’s.

Of course, at some point, my subconscious went off the rails – thus the dreaded idyllic vision. I’m sure memories of beautiful holidays complete with cherished traditions, found their way into the mix. Without even realizing it, I had set myself up for disappointment, profound sadness, anger, grief, and a dozen other emotions. Naturally, there was no way this Thanksgiving could be compared to or measured against those blissful memories.

In this particular case, our reality bore no resemblance to idyllic. Mom was having a bad day.  A very bad day.

That evening, I, along with Mom’s two caregivers and my daughter sat down to Thanksgiving dinner. By then, the food was cold, and my stomach was in a million knots. My dear mother was pacing and screaming as she had been all day. She was utterly inconsolable. Severe aphasia had long ago robbed her of the ability to communicate verbally, leaving her unable to express what was bothering her – or anything else, for that matter.

To Mom, that Thursday was just another day. It wasn’t her fault; it wasn’t anyone’s fault. It was this damn disease, all part of the unexpected hand we’d been dealt. Simply put, the picture-perfect holiday I had envisioned dissolved into a pool of tears and when it was over, I swore off all future Thanksgivings.

I could close by listing my top 10 tips for a successful holiday celebration, but instead, I’ll gently remind you to be careful of your expectations. Keep them reasonable. Check yourself along the way and make sure your subconscious isn’t taking over and creating an expectation that the day can’t possibly meet.

Rather than working to create a holiday just like those of years gone by, focus on the current reality. Remember that too many people, a lot of noise and commotion, and sudden changes to routines can really throw your loved one for a loop. Plan accordingly. Spending quality time together and making cherished memories – when it’s all said and done, those things are much more important than setting an impeccable table or serving a perfectly plump juicy bird at 4pm sharp. Flexibility is your friend and goes hand in hand with maintaining reasonable expectations.

It sounds cliché, but the past is in the past, and today is all we have. Try to go with the flow, relax, and create moments of joy wherever you can. Treasure the simple things – an unexpected smile, warm hug, or the expression on his face when he tastes a favorite dish that just might trigger a moment of clarity.

Here’s wishing you a blessed Thanksgiving with the people who mean the most to you. And, don’t forget to be gentle with yourself…

 

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Alzheimer’s Roundup

22 Sunday Jan 2017

Posted by Ann Napoletan in Advocacy and Awareness, Care Options, Diagnosis, Early Onset, Expectations, Face of Alzheimer's, Prevention, Round Up

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Tags

alzheimers, alzheimers diet, caregivers, caregiving, dementia, dementia village, living with alzheimers

img_4896

Who will care for the caregivers?

“There are some 40 million Americans like my patient’s daughter. Every day, they help a parent, grandparent, relative or neighbor with basic needs: dressing, bathing, cooking, medications or transportation. Often, they do some or all of this while working, parenting, or both. And we — as doctors, employers, friends and extended family — aren’t doing enough to help them.”  ~Dhruv Khullar, M.D.      Read full article

After the diagnosis…

You’re worried. Your mom has shown increasing forgetfulness for months. She even got lost going to the grocery store she frequents. You hoped things would resolve themselves, but instead, they kept getting worse. You took her to the doctor, hoping the problem was due to a bad interaction of her many medicines or a treatable infection. Instead, you got the dreaded diagnosis: Alzheimer’s. Now what?    Read full article

Dementia Village coming to San Diego

A San Diego nonprofit is taking an unorthodox approach to help seniors cope with Alzheimer’s disease. It’s building a village for them to spend time during the day. It’s not residential. But the village is modeled on San Diego in the 1950s, complete with vintage cars, period music, payphones and shops from the pre-shopping mall, pre-Wal-Mart era. The nonprofit says research suggests this type of visual reminder might improve cognitive function and quality of life of Alzheimer’s patients over 65.   Read full article

Eating for good brain health

“Diet absolutely does play a role. The brain is like any other organ that is susceptible to (foods) that can protect against oxidation damage. … Think of oxidation like a fire getting started. These (good) foods act like little tiny fire extinguishers that help put out those fires that otherwise would cause damage leading to loss of brain function.” ~Liz Applegate, Professor, UC Davis    Read full article

Living with early stage Alzheimer’s

“These days my ministry is Alzheimer’s. I am so much happier now that I’ve accepted my diagnosis. There’s a stigma associated with memory-loss disorders and oftentimes people are afraid to ask for help; I believe my calling is to help reduce that shame. You don’t have to be embarrassed to have Alzheimer’s.”  ~Rev. Cynthia Huling Hummel, D.Min  Read full article

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Expert Tips for Making Your Visits Joyful

16 Tuesday Aug 2016

Posted by Ann Napoletan in Caregivers, Expectations, Helpful Resources, Tips

≈ 1 Comment

Tags

caregiving, dementia, eldercare, long term care, visits to long term care

20-Experts-Talk-1

It’s what all of us want – for the time we spend with our loved ones to be the best it can possibly be! We want to see them smile, we want to create moments of joy for them, and we want these to be memories we’ll treasure forever. Depending on the circumstances or the day, this can prove to be quite a challenge.

Our friends at the Association for Long Term Care Planning recently asked 20 industry experts to share tips on visiting loved ones living in long term care. I was honored to be among those asked to contribute, and I’m pleased to share the resulting article with you. I hope you’ll find some hints that are helpful in your situation.

20 Experts Talk: DOs and DONTs When Visiting Mom and Dad at the Long Term Care Facility

 

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Some of our favorite memories…

 

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Between 2009 and 2015, Marilyn’s Mighty Memory Makers have raised over $22,000 in the fight to #ENDALZ! To all who have supported us, THANK YOU!!

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