Jun 142014
 

father's day blog 2Father’s Day – or any day, for that matter – is not a typical day for Jason.

Jason is a teenage caregiver.

While many young adults of 18 are thinking about final exams and high school graduation parties, Jason Hatke’s mind is looking much further into the future. At age 46, Jason’s father Mike was diagnosed with younger-onset Alzheimer’s disease. Jason was only 13.

There were signs in the years before Jason’s father was diagnosed. In the 6th grade, Jason was in his school classroom viewing a video about Alzheimer’s with his fellow students. Jason immediately recognized the signs of Alzheimer’s shown in the video as behaviors his father had been displaying at home. He breached the topic with his mother Rita. Then, other issues began to surface. Mike’s boss noticed he had been experiencing trouble with his memory, especially in the afternoon hours after lunch. Soon Mike was seeing doctors to figure out what was going on.

Two years and many tests later, the truth was revealed.

Mike received a diagnosis of Alzheimer’s, and it changed the course of Jason’s life.

At 15, Jason became his father’s primary caregiver. Jason chose to step up to the plate, taking on the task of determining his father’s daily needs. With his mother working full-time more than 30 miles from their home, it became Jason’s responsibility to watch over his father. “It’s an everyday struggle,” Jason says. “There are days when my dad doesn’t know if he’s hungry or thirsty. It makes every day very real.”

As with all Alzheimer’s patients, scary situations arise and the reality of the situation is often raw and emotional. Jason manages to keep afloat while growing up a lot faster than his peers. “I feel like I am closer to 35 than 18,” he says. “Support from the Alzheimer’s Association and aid from other caregiver children coping with the disease has offered me a lot of comfort.” Jason has attended a ranch camp twice since his father was diagnosed. This is where he made new connections, supportive friends and where he met his girlfriend, whose father recently passed away with frontotemporal dementia.

Inspired by his father’s strength, Jason become an Alzheimer’s advocate. He has traveled to D.C. alongside his father to ask representatives to make Alzheimer’s a national priority and encourages other young adults to become involved in the fight. He’s learned to “make every single day count.”

Advocating is a passion that requires compassion, much like Jason’s caregiver role. “It is a blessing and a curse,” he says. “I’ve had to figure out who I am quickly, more quickly than my peers. I see the future more clearly, and I’ve learned the advantages of the family unit and how to not take it for granted. Where other people my age are rebelling and turning against their parents, I have learned how to appreciate mine.”

Although Jason feels a strong moral obligation to remain in Indiana to support his dad, he recently enlisted to join the Navy. That isn’t to say that he doesn’t worry about his decision. He does. He worries about the “what ifs.” What might happen when he returns? What if his father doesn’t recognize him?

Like Jason, many caregivers and family members of people diagnosed with Alzheimer’s experiefathers day blog 1nce feelings of guilt. But Jason’s family is encouraging him in his decision and is committed to him pursuing his passions. His father insists that he won’t “weigh Jason down” by insisting that he stay in Indiana. Until Jason leaves for the Navy, he continues to live every day as it comes, taking to heart the many life lessons he is learning from his father — particularly his attitude toward Alzheimer’s. “He decided to step up and fight this disease. He advocates for progress and change and shares his voice on Capitol Hill. I respect my dad so much because of that,” Jason said.

Jason’s work as an advocate is a calling that he plans to continue to pursue beyond his years as a teenage caregiver, because he knows the difference he can make. “Imagine if my situation was your situation. Imagine how helpless you might feel, and how it would make you feel to lose your memory. My family and I advocate for change on the federal level and in our community to change the future for other families. I fight because my dad fights. I fight for those who can’t. Go big or go home.”

About Jason: Jason is sharing his story during Alzheimer’s & Brain Awareness Month in hopes that he can inspire others to get involved with the cause. He currently serves as an Ambassador for the Alzheimer’s Association, recently attending the Alzheimer’s Association Advocacy Forum for the third time. He is also working on launching a dementia website of his own.

Learn More:

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Take Action: Tell Elected Officials to Invest in Alzheimer’s Research
Alzheimer’s & Brain Awareness Month

Mar 112014
 

A few weeks ago, I developed a cough. I went to the doctor, they checked everything out and sent me home. But I wasn’t getting better. I started to worry when the cough got really bad and I was having a hard time breathing.

I called my son, who told me that if it didn’t get better, I should go to the emergency room. By three in the afternoon, I was still Cynthia_alz_bloghaving trouble breathing, so I took a cab from my home in a retirement community to the emergency room.

As with most emergency rooms, the waiting room was pretty full. I checked in, waited my turn and was finally called in.

My first stop was a little room where I talked to someone who got all of my billing and insurance information squared away. She asked me if there was anything she should know about my health history.

“Yes,” I said. “I have Alzheimer’s disease, so you might have to explain things more than once and go slow. And if something is really wrong, you will need to call my son to explain everything.”

She responded with, “You sure don’t look like you have Alzheimer’s!”

My next stop was intake, where I encountered the same question – is there anything the nurse should know?

I went through my spiel again, letting the woman know that I have Alzheimer’s disease and may need to hear things more than once and to call my son if there was a very serious or complicated issue. “I can’t believe it. You just don’t look like you have Alzheimer’s!”

Then, the doctor came in. He, too, asked if there was anything he should know about my health history. I told him about my Alzheimer’s and explained that even though I had been a nurse for many years, sometimes I just don’t understand. He said, “You’ve gotta be kidding me! You don’t look like you have Alzheimer’s!”

This conversation was repeated three more times that day – with the respiratory therapist, another nurse and an x-ray technician. Needless to say, having six different health care professionals tell me that I don’t look like I have Alzheimer’s disease was surprising and a bit troubling.

What exactly does someone with Alzheimer’s “look like?” What should I look like? Should I be unresponsive to my surroundings and bed-bound in a nursing home? Should I be incoherent and confused about where I am?

Understand that I was treated with the utmost respect and kindness by everyone in the emergency room, both before and after I told them I had Alzheimer’s disease. They even took an extra step to show me to my taxi back home so that I didn’t get lost along the way. My experience was a positive one – but it is a telling example of how deep stigma runs with this disease.

The fact that even health professionals – who should know more about this disease process than the average person – were surprised by seeing someone with Alzheimer’s who is vibrant, energetic and articulate speaks volumes.

I hope medical professionals at all levels make an effort to better understand what Alzheimer’s disease “looks like.” I hope that people in the early stages of Alzheimer’s share their diagnosis with more people. This disease may be fatal, but it doesn’t start with bed bound patients and utter confusion. It starts with people like me, who have a face, name, opinion and fulfilling life.

During my visit to the emergency room, I had a meaningful conversation with the x-ray technician, who was one of the people who told me I didn’t look like I had Alzheimer’s. Whenever I speak in public or speak as an advocate for Alzheimer’s awareness and the Alzheimer’s Association, I ask people to remember me. But before I could even ask, she said, “I will always remember you. When I am feeling down, I will think of you and of today and I know it will help me.”

It made my day to know I could positively influence someone’s life – and it keeps me motivated to advocate and share my story so we can end the stigma associated with this terrible disease.

 

About the blog authorCynthia Guzman is a member of the Alzheimer’s Association 2013 National Early-Stage Advisory Group (ESAG) and is actively involved with the Northern California and Northern Nevada Chapter of the Alzheimer’s Association. As an Advisor, Cynthia wants to do her part by spreading awareness about Alzheimer’s and reducing the stigma attached to the disease. Cynthia believes in early diagnosis and the importance of educating physicians on the best ways to support an individual throughout the diagnostic process. Cynthia lives in Napa, California. She has three children and three grandchildren.

This post originally appeared on www.alzheimersblog.org.

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Dec 232013
 

treeI miss Jim so much during Christmas time. I miss our discussions about what to get the kids and our families. I miss sitting next to our tree, looking at the lights and sharing quiet time together. I miss feeling excited, wondering what thoughtful present he placed under the tree. I miss singing songs, watching movies and so much more. Jim still throws out a hum (actually, lots of hums) during Christmas songs, but it isn’t the same. He is here, but he isn’t here.

Ever since I moved out into this great big world on my own, I have sent out cards every December. Except for last year. And the year before. And the two years before that. I haven’t had the energy. I haven’t felt jolly. And what would I put in there? Oh, life is great. We are watching Jim progress with Alzheimer’s and have no idea what our life will be like next year at this time. Merry Christmas.

The holidays are hard for Alzheimer’s families. I know this, yet I try to think that our holiday will be different. Last year, I was talking to a good friend and lamenting that I didn’t know if it would be our last “good” Christmas with Jim and that I needed to make it special. She very sternly replied, “You don’t know what is going to happen. This may be the best Christmas ever and next year may be even better. You need to just enjoy this Christmas.” It turns out, she was right! Last year we had an awesome Christmas. We probably had the best one ever.

I approached this year with similar hopes. But when I left for work on a recent Monday, I asked Jim to put the greenery and lights up on the porch, as he has done for as long as we have been together. While I was in a lunch meeting, Jim called. I heard him crying. “I just can’t do it. I can’t put them up.”  Why? Why did I ask him to do this? Why do we have to decorate our house for Christmas? Why can’t I find the time to do everything? Why? Why? Why?

I told him I was sorry, that I should have never asked him to do it. There really is this very fine line to walk. I have to give Jim tasks to do, yet I must make sure they are tasks he is able to do. Sometimes the “simplest” thing he did just a week ago seems foreign to him. Sometimes I forget he can’t do it. On top of that, Jim is still aware of what he isn’t able to do and it is a very hard pill for him to swallow.

Despite these moments – and the moments I feel the sadness and isolation this disease brings, I am still thankful for many things. I start with being thankful for my children. They are what motivates me, inspires me and keeps me smiling. I am thankful that I have Jim as my husband. He has been the most wonderful man, father and friend. Each day he continues to lead our family by example. He shows us all how to put our big pants on, live each day as it comes and do the best you can. He has no expectations, so he is never disappointed. That is all any of us can ask or hope for, no matter what our situation.

I am also thankful to all of those who donate time, money and energy to finding a cure to this horrible disease that has taken over my life and so many others’ lives. Thank you for being so generous and for believing that one day, we will all feel a sense of accomplishment. We will feel we were part of the solution.

Until that day, we will carry on our traditions for as long as we can. We may start new ones. We may lose a few along the way. But we will do it with each other. I love my family. I am grateful we have so much, when so many are in need. I am grateful it has been such a great year. I am grateful for all I have—and yet I still feel sad.

I miss Jim.

missingjim

About the blog author: Karen Garner is a mother of a 9-year-old son and a 12-year-old daughter.  She works full time and is care partner for her husband, Jim, who is living with younger-onset Alzheimer’s. She shares her journey through her blog, Missing Jim.

 

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Dec 102013
 
warrior

I love participating in the annual Walks to End Alzheimer’s, but let’s face it – walking can be boring. For my first Walk to End Alzheimer’s in 2012, I raised more than $1,500. One year later, my donations netted nearly $9,000 for my local Alzheimer’s Association through a fun and creative tribute to my brother, Kevin.

Prior to the summer of 2013, my summer hobby became the campaign “Bobbleheads United to End Alzheimer’s.” I collected my own and also asked people to send me their stadium bobbleheads; for each bobblehead I received, I would in turn make a donation to my Walk effort. I was in the midst of my 2012 tour when I received the news that my brother had passed away.

Distance had unfortunately separated us for much of our adult lives, and I never had the experience of riding the rails with my brother as an adult. Kevin would travel the world seeking thrills on all kinds of roller coasters, from the modern steel hyper-coasters of today to classic “woodies” from the mid to late 20th century. At Kevin’s memorial service, the topic of coasters was discussed at length. It was at that time that I decided that in my bobblehead chasing travels, I would ride as many roller coasters as I could find along the way as a tribute to Kevin.  As fall and winter set in, a proverbial light bulb was lit. What if, in preparation for the 2013 Walk, I set out to ride as many roller coasters as I could, and see if friends and family would pledge a per-ride donation? I began planning my new summer tour and fundraising effort: “Roller Coaster Crawls to End Alzheimer’s.”

Laying Tracks

I set a goal of 100 roller coaster rides in 100 days from Memorial Day to Labor Day. I hit every theme park within a six-hour drive from Rochester NY, from the big corporate parks to the smaller, family-run parks. I purchased season passes to several theme parks, but I quickly came to the realization that this might be a costly endeavor. My friend Marian had experience in professional fundraising, and she helped me contact the smaller parks to spread my mission. She even established a great relationship with Six Flags Great Escape. Meanwhile, the pledges started rolling in. My friends stepped up to the plate, with pledges ranging from 25¢ to $2.00 per ride! I had to get over any fears I may have had, suck it up, and ride.

On each ride, my brother rode with me in spirit. In fact, Kevin’s Facebook account was still active for some time after his passing, so I was actually able to “tag” him as being with me on virtually every ride. Although this was mostly a symbolic action, there were several instances throughout my travels that I know he was with me… if not physically, spiritually.

Media Attention

As the tour began to pick up speed, Marian and I had reached out to media in the cities I would be visiting. A local news outlet expressed interest in my mission, and reporter Seth Voorhees and I spent much of the day filming my rides and talking about my brother, his plight and the scourge that is Alzheimer’s. The 2 ½ minute piece they aired was a hit! Calls began coming in with new pledges and well wishes. The story caught the eye of Sal Fantauzzo, founder of Salvatore’s Old Fashioned Pizzeria, a large chain of pizzerias in the greater Rochester region. Sal was so touched by the story that he offered to match all of my pledges at the end of the tour. The news story and matching donations from Salvatore’s provided a catalyst for even more growth, and I was back on the road again.

Fearless Fun

I plotted out the rest of the tour, conveniently scheduling ride #100 for August 21st on Coney Island’s “Cyclone”. This ride would be especially significant as not only would it be the ride that fulfilled my goal of 100 rides, but it was also the last coaster Kevin rode before his passing. In the end, I actually rode 122 roller coasters in as many days, including:

  • Seabreeze Amusement Park on the shores of Lake Ontario in Rochester
  • Six Flags New England on Memorial Day weekend
  • Waldameer Park in Erie, PA. When people ask “What was your favorite roller coaster of the tour?” I immediately respond: “Ravine Flyer II at Waldameer Park.”
  • Rye Playland, Knoebel’s Amusement Park, DelGrosso’s, Six Flags Great Adventure
  • Lakemont Park, a small amusement park with the prestige of having the “Oldest Operating Roller Coaster in the World”, Leap the Dips, a landmark dating back to 1902
  • Lake Compounce and Quassy Amusement Park
  • Morey’s Piers in the Wildwoods, NJ, boasting three ocean side piers of entertainment
  • Sylvan Beach, where I enjoyed the “Galaxi”  for ride #95

Hershey Park is where I had the strongest feeling that Kevin was accompanying me on the tour. He was passionate about the Grateful Dead, so it seemed like more than coincidence that the music in the park that day was Jerry Garcia material seemingly direct from his collection.

The Cause

My pledges were all based on the “honor system”; I cannot tell you how impressed I am with my donors for their willingness to fulfill their pledges. Some apologized for not contributing “enough” due to their particular situations. I assured these folks that any amount would be appreciated by those facing Alzheimer’s.

This cause is passionately burned into my personality now. I don’t think that I shall ever stop raising funds and awareness for this cause. The things I’ve learned, the people I’ve met and the places I’ve seen are easily the best things I’ve ever done in my 52 years on this earth. But I still miss my brother. A lot…

What Next?

How about a 16-hour roller coaster marathon for Alzheimer’s Association The Longest Day on  June 21, 2014? Sure… why not? Two of my planned stops are Cedar Point in Ohio and Six Flags Great America in Illinois for the new coaster “Goliath”!

Did you Walk to End Alzheimer’s in 2013? Leave a comment about your experience and why you Walk – or ride, like Michael!

About the blog author: Michael joined more than 400,000 others by Walking to End Alzheimer’s in 2013. He walked in memory of his brother Kevin J. Moran who succumbed to early on-set Alzheimer’s at age 54 after a three-year battle with the disease. A card-carrying ACE (American Coaster Enthusiasts) member, fun-loving Kevin traveled the world riding new and vintage rollercoasters, and Michael followed suit. Share your stories from the 2013 Walk season on Facebook and Twitter and on ALZConnected.

 

Sep 242013
 
single flower walk

The first change I noticed in my dad was his inability to write out checks.  I stopped by his office one day, and he was sitting at his desk with the checkbook open.  Several balled-up checks were scattered on his desk. He was slow to speak, but finally admitted that he could not write out the check correctly. On one check, he had transposed the numbers for the amount to be paid.  On another check, he had attempted to write his name on the “payee” line, but the scrawl did not look like his signature.  He was so frustrated, confused and scared. This was so unlike him—a man who had always been so confident, organized and in control. This was just the beginning of many changes in his personality and behavior.

My dad had Alzheimer’s, a progressive disease that robs the mind. It also breaks the hearts of family members who helplessly watch as their loved one slips away.

Fred Is Not ForgottenAs time went on, my dad, who had always been an impeccable dresser, no longer seemed to care about his appearance. He would mix prints with plaids, and chose to wear the same red sweater every day, even though he had a closet full of clothes. Eventually, he had to go into a 24-hour nursing facility, as he would wander at all times of night and became combative.

It was devastating for family and friends when we realized that he had slipped into his own little, confused world and did not recognize any of us. At times he mistook me for his sister or his wife.  Later, he ignored everyone but my brother, and their discussions were limited to talking about the family business. Eventually, all of his visitors were greeted by a blank stare.  As his journey came to an end, his muscles became rigid.  He could no longer sit up or walk.  He died in a fetal position, three years after the initial diagnosis.

His bout with the disease was relatively short in comparison to that of many victims, but his condition, decline and death have had a lasting effect on me. Twenty-five years later, every time I forget a word needed to complete a sentence or forget where I put something, I fear I may have the same fate.  Since his death, more attention has been given to Alzheimer’s; however, more attention is needed. It is now the sixth leading cause of death and the only cause of death among the top 10 in the United States that cannot be prevented, cured or even slowed.

On October 13, 2013, I will Walk to End Alzheimer’s at Tower City Center in Cleveland, Ohio.

I will walk in memory of my dad, Fred Grair, Sr., and other family members who have been affected by Alzheimer’s.

walk to end crowd

I will walk to allay my fear of contracting the disease.

I will walk on behalf of the more than 5 million Americans who are living with Alzheimer’s.

I will walk to raise money for Alzheimer’s awareness, support, care and research.

I will walk for you.

Today, more than half of all Americans know someone with Alzheimer’s.  If you have not been impacted in some one by this terrible disease, consider yourself fortunate.  Soon, no one will be untouched.  Please walk with me to end Alzheimer’s.

About the blog author:  Stephanie Grair Ashford is steering committee member and team captain for the 2013 Walk to End Alzheimer’s in Downtown Cleveland, Ohio.  You can donate to her team, Fred’s Not Forgotten.

This column originally appeared in the Sun News.

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Jun 212013
 

toddpI’m an actor from San Francisco who came home for Christmas and stayed.  My Mom is in Stage 4 of Alzheimer’s. My Dad is in denial, but he is getting better.

I went to the Alzheimer’s Association and they gave me lots of support, ideas and the skills to move ahead.  They also asked me to do The Longest Day, a 16-hour event to raise funds for Alzheimer’s support, care and research.

I chose theatre.  What was I thinking????

I was worried about my choice, but then I watched “Madagascar 3.” That’s right.  You heard me.  “Madagascar 3.” And I got all teary and emotional…but not when you would expect. It happened when they PUT ON A SHOW in a crazy, grandiose Cirque d’ Soleil way. I wept…..openly. And then I knew I had made the right choice.
directors_chair
So, at 5 a.m. this morning, I got up to prepare for the day of theatre ahead of me.

Thank goodness my pal Ian Smith in the United Kingdom did a comedy radio show in the wee hours. But, now it’s my turn. I’ve got to get down to the Mill Coffee Shop in the Haymarket of Lincoln, Nebraska, to meet my co-hostess Jessica West Bower for our morning talk show “Mornings Are a Drag.”  Drag Queens are always late so I might be vamping a bit there.  Then off to the Tada Theatre across the way for a day of show tunes and Chopin, sonnets, soliloquies and schtick.   I have all ages signed up to perform for 16 hours and it will be open to the public. It is going to be an amazing day of making memories – memories that seem more important than ever before.

One of my friends, Brendan Kelly, who is a fellow actor, stated in his donation comment box, “In support of live theatre everywhere and the healing the arts provide.”  And that is why I am doing this:  My mom gave me the support when I boldly stated I wanted to be an actor ,and it’s only fair I give back. The thought of keeping someone and their family from going through this would bring me so much joy and what better way to celebrate than by doing what has always given me the greatest joy in my life—performing.

About the blog author: Todd Pickering is participating in Alzheimer’s Association The Longest Day®, a sunrise-to-sunset event on June 21, 2013, to raise awareness and funds for Alzheimer’s care, support and research. 

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