Alzheimer’s & Managing Holiday Expectations

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“Expectations were like fine pottery. The harder you held them, the more likely they were to crack.”  ― Brandon Sanderson

Moments of true joy are often fleeting in our hectic, fast-paced 21st century lives. Add Alzheimer’s to the equation and things become more challenging. Even on the best days, caregivers struggle to find balance, contentment, and peace of mind.

As the holidays approach, we feel pressure to create a picture perfect Norman Rockwell backdrop, from the spectacular meals and family gatherings to the gifts, traditions, and festive decor. While some level of planning is obviously necessary during the holiday season, fully embracing reality and recognizing limitations is critical to avoiding disappointment.

Dreaming of Holidays Past

Back in 2010, I decided Thanksgiving would be just like old times if I cooked the traditional meal at Mom’s residential memory care home. That would solve everything; I actually convinced myself that if I tried hard enough, I could create holiday utopia. 

You can imagine how that turned out!

As is almost always the case, Alzheimer’s quickly reminded me who was in charge. This is an excerpt from a piece I wrote later that evening:

I cooked dinner, and all the while, my stomach was churning, my heart was breaking, and my mind was going in a million directions.

Who is this woman? What can I do to help? Get me OUT of here. What if I’m doomed to the same fate?? Why didn’t I bring a bottle of wine? Is this really my mother? This is just a bad dream, right? Will she let me hug her? Should I try to talk to her? Can I convince her to taste this stuffing? Should I back off and give her space? Why can’t ice cream fix everything? 

Quite honestly, I don’t care if I never cook another turkey in my life… celebrating Thanksgiving on a deserted island sounds like a spectacular plan, in fact.

Grand Illusions

I was crushed, but I had broken the cardinal rule of dealing with dementia – I had created a fantasy that would have been impossible to live up to under the most ideal of circumstances. Simply put, I set myself up for major disappointment.

Special occasions provide fertile ground for creating these grand illusions, and that’s why I share this story. Remaining firmly planted in reality doesn’t mean everything has to be gloom and doom. It simply means avoiding overinflated expectations.

Depending on how far along your loved one is in their progression, they may not even realize it’s a holiday. To them, Thanksgiving is just another day. Even just a few extra people in the house can be overwhelming. Routines are put on hold, noise levels increase, and what feels like a festive atmosphere to the average person may translate to full on chaos and commotion for someone living with dementia.

Keeping It Simple

Set aside some quiet time to spend with your loved one on Thanksgiving. Prepare visitors ahead of time, especially if they aren’t accustomed to dealing with dementia and its challenges.

Some other keys tips for making the holiday happy include:

  • Keep noise to a minimum. Speak clearly in a calm, soothing tone.
  • Minimize distractions, and remember that if you are tense, your loved one will pick up on that feeling.
  • Create a quiet area where one or two people at a time can visit.
  • Watch for signs of overstimulation and recognize it may be time for a break.
  • Keep some old photographs handy for reminiscing.
  • Realize that sometimes just sitting and holding their hand or rubbing their back makes for the perfect visit.
  • Don’t argue or correct them. Remember the best visits involve you entering their world, rather then expecting them to come to yours.
  • Know that the emotions stirred by your visit will last long after the memory of your time together has faded.

First and foremost, find joy in the simple things and avoid the temptation to create unrealistic expectations during the holiday season. The holidays will undoubtedly be different than they used to be, but they can still be very beautiful.

Wishing you and yours peace, joy, love, and a bounty of blessings this Thanksgiving….

Alzheimer’s Talks: Dr. Rudy Tanzi

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If you missed the October Alzheimer’s Talks call, I hope you’ll take time to listen to the recording. We don’t often have the opportunity to hear directly from a leading researcher, but thanks to our friends at USAgainstAlzheimer’s, we were able to spend 60 minutes with Dr. Rudy Tanzi last month. The discussion was fascinating, informative, and full of reasons to be hopeful.

Take a listen as Dr. Tanzi talks about his team’s recent “Alzheimer’s in a Dish” discovery and how it will allow researchers to screen potential drugs 10 times faster and cheaper than ever before. During the second half of the call, he takes questions from listeners – again, giving us rare insight into the latest research.

To listen, click here –> A Major Breakthrough: Alzheimer’s in a Dish – Dr. Rudy Tanzi, Alzheimer’s Talks – October 2014

Also, be sure to register for the November Alzheimer’s Talks discussion with Olivia Mastry of ACT on Alzheimer’s. Ms. Mastry will share Minnesota’s very successful model for creating dementia friendly communities.

Five Helpful Tips for Caregivers

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November is National Family Caregivers Month, an opportunity to focus on the challenges and needs of the more than 60 million Americans caring for family members across our country. As the population ages, so does the demand for caregivers. Consider this:  In 2013, over 15 million caregivers provided an estimated 17.7 billion hours of unpaid care for loved ones living with Alzheimer’s or another form of dementia. Those numbers are astounding, and they’re on the rise.

The natural tendency is to think of a caregiver as someone who cares for a loved one at home on a 24×7 basis; however, the role takes on many forms. Are you working full time and looking after a parent who still lives independently? Are you still raising children while simultaneously handling household tasks for your mother who is in the early stages of dementia? Do you oversee the care your spouse or parent is receiving in an assisted living or skilled nursing facility? These are all examples of the modern day caregiver.

If you or someone you know is a member of this ever growing demographic, I hope you’ll read on as I share five important tips to help caregivers achieve the balance and peace they dream of.

Accept help. Although most caregivers are stressed out, burned out, and worn out, they often have a difficult time asking for and accepting the help they desperately need. While doing some research in 2013, I came across the Lotsa Helping Hands website and it remains at the top of my list of recommendations. This powerful tool is free and provides caregivers with a central location to post tasks with which they could use help. Many times, family members and friends want to help, but just don’t know how – Lotsa Helping Hands solves that problem. Visit the website to find out more about how it works.

Consider some form of respite care. Simply put, you need a break. It doesn’t have to be a week in the Bahamas (although that would be nice), but scheduling an hour or two to go shopping, take a long walk, meet a friend for coffee, or just read a book can do wonders for the psyche in those moments where you feel ready to throw in the towel. To learn more about respite care, visit the ARCH National Respite Network or the Eldercare Locator website.

Find a support network. I can’t stress enough just how important this is. While friends will do their best to understand what you’re going through, nothing can replace connecting with another human being who has walked in your shoes. Contact your local Alzheimer’s Association chapter or Office on Aging for a list of available support groups. If schedules or lack of respite care prevent you from attending in person meetings, there are plenty of wonderful online options including the USAgainstAlzheimer’s, Memory People, and Alzheimer’s & Dementia Caregivers groups on Facebook, the Caregiver Action Network forum, and the Alzheimer’s Association’s ALZConnected online group.

Get organized! Check out technology designed to help caregivers stay organized; one of my favorites is a smartphone app called Carezone. If you aren’t tech-savvy, at a minimum, make sure important documents are in a safe place, preferably filed together in a folder or binder. Better yet, create a binder containing all pertinent information and documents from advance directives to a current medication list, insurance information, list of contacts, and medical history. There’s peace of mind in simply knowing that when you need something quickly, you know just where to find it.

Be gentle with yourself. We are our own worst critics, and caregivers are particularly susceptible to unhealthy self talk. Pay attention to your thoughts for a day and you’ll be surprised at how much time you spend beating yourself up. I recommend the book The Four Agreements, by don Miguel Ruiz, to all caregivers. The simple lessons found in these pages will increase your self awareness and help you manage guilt, stress, and expectations – both self imposed and those of others.

Please leave a comment if you have a tip to share with other caregivers. In the words of Charles Dickens, “No one is useless in this world who lightens the burdens of another.” 

Upcoming Event: Creating Dementia Friendly Communities with Olivia Mastry

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Olivia Mastry and ACT on Alzheimer’s have established dementia-friendly environments in 32 different communities in Minnesota.

In the next Alzheimer’s Talks call presented by USAgainstAlzheimer’s, we’ll learn more about the power of dementia-friendly communities and how to use the Minnesota model to create dementia-friendly environments in communities nationwide.

Olivia will answer questions and share her recommendations, including lessons learned and a toolkit with concrete steps in developing a plan.

Register today for the call on November 18th, from 3-4pm ET.

http://actions.usagainstalzheimers.org/p/salsa/web/common/public/signup?signup_page_KEY=6874

Postscript:  If you missed Olivia’s call, you can sign up to receive the highlights via email. Click –> here.