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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Helpful Resources

More Invaluable Holiday Tips

20 Friday Dec 2013

Posted by Ann Napoletan in Advocacy and Awareness, Caregivers, Expectations, Helpful Resources, Holidays, Support system, Tips, USAgainstAlzheimer's

≈ 2 Comments

Tags

alzheimers, caregiving, christmas with alzheimers, dementia, holidays with alzheimers

treeIf dementia has touched your life, you know how difficult the holidays can be. Expectations followed by disappointment and traditions slowly fading; a once joyous season often turns into what is perhaps the most stressful times of the year.

Earlier in December, I had the pleasure of being a guest on the USAgainstAlzheimer’s Activist Network call, and our very timely topic was – you guessed it – coping with the holidays. Trish Vradenburg, our co-founder, has compiled many of the tips from that call into a great piece for the Huffington Post.

Take a few minutes to read Making the Holidays Bright When Alzheimer’s Is in the Picture, and if you have a chance, listen to the recorded call. You’ll hear Susy Favaro, LCSW, from the Banner Alzheimer’s Institute, Virginia Biggar, Director of the USA2 Activist Network, and myself talking with both caregivers and several individuals who live with the disease every day. The callers who participated had many insightful comments and suggestions that could significantly improve this and future holidays for you and your family.

Do you have a holiday story or tip to share? If so, please leave a comment. By sharing our experiences, we have the potential to help each other immensely!

Happy Holidays!
Ann

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Reasonable Expectations: Key to a Happy Holiday

24 Sunday Nov 2013

Posted by Ann Napoletan in Caregivers, Eason House, Expectations, Grieving, Helpful Resources, Holidays, Mom, Ruminations, Tips

≈ 2 Comments

Tags

alzheimers, alzheimers expectations, caregiving, dementia, holidays

turkeyIt’s that time of year, and we’re seeing lots of tips on how to handle the holidays once Alzheimer’s comes calling. For me, it can be boiled down to these three words: Have reasonable expectations.

One of the easiest – and most dangerous – traps to fall into is building the holiday up in your mind, and creating a Norman Rockwell-esque image that probably wouldn’t be realistic even in the best of times. Nine times out of ten, doing so is going to result in stinging disappointment. It took me a long time to learn this, but it finally happened in 2010.

We had moved my mom into a beautiful residential memory care home, and I was envisioning the most perfect Thanksgiving. In my mind’s eye, the table was set beautifully, the food was delicious, and everyone was smiling. But I didn’t just imagine it; I was determined to make it happen. Instead, the day went something like this:

* Making Lemonade Out of Lemons… or Margaritas Out of Tequila

Donna Reed-kitchenDamn if I didn’t conjure up a glorious vision of mom having a great day and even helping me in the kitchen (I think in my vision, we were even wearing spiffy pumps with 2-inch heels and cute little gingham aprons trimmed in lace). Fantasyland. Big. Mistake.

Kitchen activities commenced at home last night, where I baked the pies and made our favorite cranberry sauce and salad. This morning, I did the candied sweet potatoes then loaded the car with all the prepared food plus fixin’s for mashed potatoes, corn, and stuffing. I had pre-ordered a fresh turkey and dropped it off at Eason House earlier in the week.

Reality Sets In

My fantasy began to crumble about seven-eighths of a second after I arrived at the house. When I went inside, it was very apparent that mom was having another “one of those days”. She was stony and silent – despondent. I quickly grabbed one of the pies and cut her a slice thinking I could turn things around.

Alas, she lit up at the sight of the pie and ate every single bite. Unfortunately, when it was gone she fell right back into her funk.

I was there for about seven hours, and aside from a few moments here or there, she was inconsolable. There were a few small stretches where she let me rub or back or head and hold her hand, but the vast majority of the day consisted of her pacing, screaming, sobbing, standing out in the rain, pulling her hair, and hitting. To put it mildly, it was awful. 

There is nothing worse than seeing her that way and not being able to do a single thing for her. She doesn’t want to be touched, talked to, or comforted. And she is very good at letting us know it.

I’ve never experienced such a feeling of complete and utter helplessness.

On days like today, I know there are moments of clarity where she realizes things aren’t right and that just frustrates, angers, and scares her more. Based on her facial expressions and behavior, I can’t begin to fathom what’s going on in her mind, but whatever it is, it’s horrendous.

The Show Must Go On

boiling-panI went ahead and cooked dinner, but all the while, my stomach was churning, my heart was breaking, and my own 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?
                  Am I in the middle of a bad dream?
                     Will she let me hug her?
                        Can I convince her to taste this stuffing?
                           Should I try to talk to her or back off and give her space?
                              Why can’t ice cream fix everything??

When it was all said and done, Mom’s caregivers sat down to dinner with Jess and I. I’m not sure I even tasted my food; it all just landed in a heap in the pit of my stomach. Mom wouldn’t come to the table, but after we finished, I did coax her over with another piece of pie.

Next Year: Thanksgiving in Bora Bora?

autumn-leavesSlowly, the rest of the ladies arrived home after having dinner with their families. The house was a bit chaotic with a lot of conversation and activity, which just adds to mom’s agitation. Eventually, everyone left and the house was once again quiet.

One of the ladies was hungry, so Susie fixed her a plate and she raved about how delicious the meal was. That, along with a text from Jess (“Thanks for a great meal!”) was the highlight of the day.

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.

(*Excerpt from post written November 25, 2010)

Well, as I recall, that night ended with a margarita (or two) and a vow to start a new Thanksgiving tradition which we did the following year.

Right up until the end of her life, I had remind myself to keep my expectations in check, but after that day, it became a little easier. It was all about realizing that the holidays would never be what they once were, but we could still have some incredible moments of joy.

 

Related Articles
Holidays & Alzheimer’s Families
Holiday Hoopla
The Alzheimer’s Caregiver: Tips for the Holidays
Grief and the Holidays: 10 Personal Tips for Grievers
Approaching the Holiday Season as an Alzheimer’s Caregiver
Grief Healing: Coping with the Holidays
8 Tips For a Great Holiday Season

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Alzheimer’s Prevention Registry: Who, What, When, & How?

23 Saturday Nov 2013

Posted by Ann Napoletan in Advocacy and Awareness, Facts & Figures, Helpful Resources, Prevention, Research

≈ 2 Comments

Tags

alzheimers, Alzheimers advocacy, alzheimers prevention initiative, alzheimers prevention registry, alzheimers research, banner alzheimers institute, dementia

apiI recently had the pleasure of participating in a webinar presented by the Banner Alzheimer’s Institute (BAI) in Phoenix. The hour left me feeling energized and more hopeful than ever that we can beat this disease. Without question, there are some great things happening in the world of research, but we have to help.

What Is the Alzheimer’s Prevention Initiative?

BAI is a non-profit organization dedicated to groundbreaking research, and the Alzheimer’s Prevention Initiative is one of their most crucial projects.

Jessica Langbaum, Ph.D., Principal Scientist and Associate Director of the Initiative, is passionate about this endeavor, and for good reason. Almost two years ago, she lost her grandfather – formerly a successful engineer – to Alzheimer’s, and she’s committed to doing whatever she can to save other families from similar heartbreak.

microscopeThe most essential component of the Initiative is the Alzheimer’s Prevention Registry, which was created to connect like-minded individuals interested in stopping this horrible disease in its tracks.

Members are kept apprised of the very latest news and information in the world of dementia research, but that’s just part of the mission. The Registry also seeks to create an unprecedented pool of potential study participants for prevention research.

How Does It Work?

It’s important to note that joining the Alzheimer’s Prevention Registry does not obligate you to participate in research.  What it does do is arm you with the knowledge you need to be a more effective advocate, while providing information on the latest study opportunities in your own community. From there, the decision is entirely your own.

As you might expect, a common question is, “What might a typical study look like?”

Prevention studies take various forms. Participating can be as quick and easy as completing an online survey in the comfort of your living room or visiting a nearby research center once or twice.

fresh veggiesOf course there are also larger randomized clinical trials. In these longer-term studies, participants are assigned to either an experimental group or a control group and are observed over time. Some of these projects involve investigational drugs while others focus on things like healthy lifestyle choices.

Why Does It Matter?

Over 5.2 million Americans are currently affected by Alzheimer’s or related dementias – a number that’s expected to triple by 2050. The economic impact is staggering. Consider this. The disease costs our country $203 billion annually and that will grow to $1.2 trillion by 2050 unless we find a way to slow or stop the progression.

If we stay on the current trajectory, by 2050, every Medicare and Medicaid dollar could be spent on dementia with nothing left over.

The Alzheimer’s Prevention Registry has set an ambitious goal of enrolling 250,000 healthy members, 100,000 of those by the end of 2013. Individuals age 18 and over of all races and ethnicities are welcome, whether or not they have a family history.

How Can I Get Involved?

According to Dr. Langbaum, as many as 85% of drug trials face delays because they are unable to attract or retain a sufficient number of participants. Quite simply, too few people are volunteering due to fear, concerns about time commitment, or just because they aren’t sure where to start.

pathThe fact is, most Alzheimer’s studies never get off the ground because they fail to meet recruitment goals. The good news is we can all be a part of the solution by joining the Alzheimer’s Prevention Registry today, and asking our friends to do the same!

Remember, becoming a member opens the door to opportunities, but in no way obligates you to take part in any research.

Every person who joins the Registry brings us one step closer to that breakthrough discovery! Visit the website to sign up today!

___
The Banner Alzheimer’s Institute is a non-profit organization; however, I was compensated for this post. I’ve been a member of the Registry since May 2013.

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