Jun 262015
 

Tim, diagnosed with Frontotemporal dementia in 2012, living with HIV

Working in information technology and then for many years as a part of a management team, my career was very important to me. At the end of 2009, however, I realized that I was having trouble focusing on my job, and one day after a lunchtime walk, I felt like I had lost sight in one of my eyes. Thinking it was due to stress, I didn’t tell my partner Ron. I explained it away.

In early 2010, I took a work trip to Denver. During that week I had issues typing and communicating. When I met with my boss to discuss the trip, I had trouble speaking. That’s when I decided to see a doctor. “After talking to you, I think you need to go to ER right now,” he said.  I found out that I had had a stroke, and doctors suspected that several mini- strokes had also occurred, which accounted for my vision loss.timblog

Despite having some answers, I didn’t have them all. After returning to work a couple of months later, I was still struggling to do my job, which resulted in my being demoted. In January 2012, I was laid off. Due to all of the anxiety I was experiencing, I started seeing a therapist, who suggested that I make lists of coping strategies, but I never made the connection in my head to actually complete the tasks.

While in therapy, I was also undergoing testing and not sharing the results with Ron. I would come home and say “everything is fine” very nonchalantly. Ron knew everything wasn’t. “Either you are not communicating properly or you are just not telling me something,” he said. From then on Ron accompanied me to my appointments. We learned that the results of the testing indicated that there was a problem, but no conclusive diagnosis. Ron crusaded to find out what was really going on.  Eventually, in 2012, after many tests and much anxiety, I was diagnosed with Frontotemporal dementia (FTD), which is caused by progressive cell degeneration that affects the frontal and temporal lobes of the brain.  

Ron is my everything. He is my advocate, my only support, and my protector. If it wasn’t for him, I probably would not have received a diagnosis. I don’t even realize how many times a day he helps me make decisions. He’s good at subtly guiding me, as I can get very easily lost in a task. He is always looking out for my best interest. Because of FTD, I don’t have a perception of what repercussions exist due to my actions. I can’t even imagine what my life would be if I did not have him here.

Having been HIV positive for 25+ years, I treat the diagnosis of dementia like HIV; it doesn’t define who I am or what I can do. I don’t let the dual diagnosis control my life. I present myself first – work experience, life experience – and eventually my story unfolds. When I introduced myself to Congressman Cory Booker, I said, “Something you might not know about me is that I was diagnosed with dementia in 2012.” It was amazing how his constitution changed. “I wouldn’t have known,” he replied. It changed his whole perspective.

I tell people who I speak with on Peer-to-Peer Outreach Program calls that they have to look at their diagnosis as a new adventure. (Peer-to-Peer Outreach is a program of the Alzheimer’s Association that connects newly-diagnosed individuals with others living with Alzheimer’s and other dementias via telephone in order to share their experiences.) It’s a new challenge in your life. You will find different ways to accomplish tasks and you will find talents that you never had before. I never used to be able to speak in front of people. Because of my diagnosis, I can now give a speech. I still have challenges, I still have anxiety, but I have been able to do things I couldn’t do before as well.

As a care partner, Ron has a thankless job. I don’t always acknowledge what he does for me. Some doctors have suggested that the word dementia not be used in front of me and I appreciate that Ron is so honest with me about the diagnosis. Individuals living with dementia deserve to have advocates. You need someone who will go to battle for you. Ron does that for me.

I was losing direction and I needed to find a new outlet, so Ron encouraged me to get involved with the Alzheimer’s Association. Being an Early-Stage Advisory Group (ESAG) member has allowed me to let people know that their life is not over – that life is what you make of it. If I had a tagline like the women do on the Real Housewives reality shows, mine would be: “Get to know me first. I am more than my diagnosis.”

Ron, Tim’s care partner

I knew something was wrong long before Tim received a diagnosis. As his advocate, I helped coordinate his medical team and began making plans for the future. We went to an elder care lawyer (who was very helpful) and sold our home that we spent 10 years renovating .A lot of people wait too long to plan. The sooner you do that the better.

Dementia happened to Tim much earlier than it does for most. He was hoping to work up to 15 more years, build funds for retirement and travel. We moved from the suburbs to a 55+ community, and we live a very different life here. Tim and I have attended support groups through the Alzheimer’s Association, but I have also found support in our community by connecting with other caregivers. While other community members are older and their experiences more varied, their support is still valuable. Almost all of the people that are involved in support groups and services in the community are much older than us and it’s hard to relate to one another. Prepare yourself, because as a care partner, you have to realize it will only become even more intense.

You have to seek out advice. You have to be realistic. It won’t get any better. You have to take advantage of every moment together and celebrate what you have. Your relationship will change greatly. There are times when it’s difficult, and it’s usually little things that push you over the edge. You get by, but it’s very difficult. It is very hard to see your loved one diminish in front of you. I love Tim, but he isn’t who he used to be. As a care partner, you sometimes feel like you have the weight of the world on your shoulders.

It is a heavy journey and it is a process, but you do what you can do. It’s not all gloom and doom, but it has been difficult reflecting on the past three years. Neither of us have a career anymore. We had to sell our home and settle into a new place. Amongst all that, we were working on getting Tim’s diagnosis. I lost both of my parents and Tim’s brother and father passed away – we’ve had so much happen. But we don’t give up. You have to make the best of your situation. I want other care partners and caregivers to know that they shouldn’t give up their whole identity. You have to do things for yourself. Our situation is what it is. You have to try and take in every moment you have and hold on to what you can.

As a member of the Alzheimer’s Association 2014 National Early-Stage Advisory Group (ESAG), Tim Kaufman raises awareness of the financial impact of the disease and the value of an accurate and early diagnosis. He also addresses the needs of lesbian, gay, bisexual and transgender (LGBT) individuals living with dementia. Tim and his partner Ron live in Southampton, New Jersey.

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Jun 212015
 

“There is hope in the future and beauty in the moment.”

The Longest Day has afforded us the promise of this statement.

When my incredible husband Steve was diagnosed nearly four years ago with younger-onset (also known as early-onset) Alzheimer’s, we knew we needed guidance. The Alzheimer’s Association has provided us with that and more.

The Longest Day gave us an opportunity to take an active role. It also provided us with a chance to have friends and family gather and rally around Steve to let him know how loved and supported he is. We honor him by hosting a day filled with some of his favorite activities, and our grandchildren are empowered as they use their small but poignant voices to honor their Gramps and raise awareness. They have even coined the phrase “When life gives you JUDYTEAMAlzheimer’s…make lemonade!” Selling lemonade is only one of today’s activities.

lemonadeWe have run, walked, biked, swam, played horseshoes and danced Zumba. We have spiffed up the exterior of our old beach house, done puzzles and sang. We have shared old memories and created new ones. We have laughed and cried. We have honored those living with Alzheimer’s and memorialized those whom we have loved and lost. This is our day to celebrate life with Steve, and assure ourselves of what can’t be taken from us with this disease—love!SteveTLD

As the sun sets, a soft glow of purple washes across the faces of the nearly 50 people in our beach circle. We take time to reflect on what we have accomplished, and we ceremoniously offer an intention of hope and honor. Each of us ignites our individual light in the sand and then we join them together. As each is lit, we watch the dim light of a single candle grow from a faint glow to a radiant brightness. It’s then that we realize that there is hope in the future glowand beauty in this very moment.

It’s now time for contemplation of what has been achieved today, The Longest Day.

We have raised substantial funds for the Alzheimer’s Association, which has not only been an incredible wealth of resources for us on this journey, but also the force behind making global strides in research, care and education.

We have exhausted our muscles from our various activities. Our faces are sore from the shared smiles. Our arms and shoulders carry the weight of both giving and receiving numerous “strength-giving” hugs.

Our lungs are contented by being filled with fresh sea air. Our hearts are warmed and overflowing with the love and support of our family, friends and neighbors. As a group, we have turned Wells Beach purple to raise awareness. We have fought hard for future generations to realize a time when Alzheimer’s disease is just a memory. We have witnessed the true power of a community effort.endalz15 (1)

Thank you to all who are fighting this good fight! And to those who will face another “longest day” tomorrow…we do this for you.

About the Author: Judy Johanson is care partner for her husband, Steve, who was diagnosed with younger-onset Alzheimer’s at age 59. Together with her family and friends, Judy is participating in Alzheimer’s Association The Longest Day®, a sunrise-to-sunset event on June 21, 2015, to raise awareness and funds for Alzheimer’s care, support and research. 

 

Jun 212015
 

June 21 is my mom’s 80th birthday, but she doesn’t know that. She doesn’t know what day it is anymore. She doesn’t even know what a birthday is. My mom has late-stage Alzheimer’s.

Today, on her birthday, I am climbing a mountain in her honor by participating in the Alzheimer’s Association’s annual event The Longest Day. Along with 10 friends, I’m climbing Mount Whitney, the tallest mountain in the continental U.S., to raise money so that the Association can continue to provide support for people living with this disease. The climb will take 16-17 hours to complete and is certainly the longest hike I have ever undertaken. Every step is for Mom.JOHNBTLD

We started this hike in the darkness at 3 a.m. and we are still on our way to the top. As I take each step up this incredible 14,500-foot mountain, I am remembering all of the steps it took to get to this moment: all the training hikes and gym workouts, all the fundraising, and all of the long, seemingly impossible days of my mother’s disease.  All along the way, The Alzheimer’s Association was an invaluable resource for advice, referrals and strategies for handling my mom’s illness and decline.
JOHNTLDMy mom’s Alzheimer’s diagnosis was devastating news for the whole family, but especially devastating for her. She always loved learning, reading and discussing current events. The first in her family to go to a four-year college, she worked for Planned Parenthood and as a lobbyist for the Oregon Legislature. The last job she held was as an editor for a bilingual newspaper. At the same time, she was studying to become an ESL teacher.

johnmomThen she started forgetting things; appointments, bills, daily tasks. She lost her purse over and over again. She couldn’t read books anymore, since by the time she would get to the end, she had already forgotten the beginning.

She ended up losing her job due to her frequent mistakes. She lost friends because she would forget to call. She forgot to pay her taxes and her rent. She was ashamed of her symptoms, and became really good at hiding them by writing everything down in a notebook and carrying it with her everywhere. But then she started losing the notebook, too.

Mom forgot the day, the month and the year. She even started imagining she was living in the past. Eventually she forgot her own name and her family, including me.johnfriends

Every step of the way, The Alzheimer’s Association was there with the advice and resources I needed. Now I am seeking to give back so that others facing this awful disease can be supported. I’m climbing because it’s my mom’s birthday, and because I can’t celebrate with her anymore. Participating in The Longest Day seems a fitting tribute to her 80 years of life.  My team and I have raised over $15,000 and know that it will help a lot of people dealing with this disease.JohnGroupTLD

It feels empowering to be able to give back and to honor my mom in this way on her birthday, The Longest Day.

About the Author: John Binninger and his friends that make up The Whitney Summiters are participating in Alzheimer’s Association The Longest Day®. Click here to visit John’s team page.

Jun 212015
 

Good morning! Today is an important and exciting day in the making. This morning, members of the San Diego Harley Owners Group (H.O.G.) chapter are joining members of the San Diego Bridge Academy and Redwood Bridge Club in the fight against Alzheimer’s.  The American Contract Bridge League (ACBL) leads the fundraising to benefit the Alzheimer’s Association on The Longest Day, along with raffles, a fine art silent auction and an appearance by Chopper the Biker Dog!

Forget what you may think about people who ride motorcycles or people who play bridge. Not only are many of the stereotypes untrue, but Harley riders are just as active in their communities and willing to step up and make their voices heard as the bridge players are. Together this diverse group of backgrounds will ride across the 30+ bridges of San Diego and play bridge from sunrise to sunset.

Alzheimer’s affects more than 60,000 people in the San Diego area, and with the average age of an ACBL bridge player being 69, those in our community are susceptible. We are speaking with local television stations first, and after that, we will be making a stop at the local Harley dealership to bring together a unique group of Harley riders and bridges players so that our voices can be heard together.trishwhite

I myself have a personal connection to Alzheimer’s disease. When I was diagnosed with a plaque on my brain in 2010, I knew I had to stand up. I spent very little time feeling sorry for myself, and told myself that I couldn’t give up. I could lose my limbs and live without them, but my brain? Not my brain. My brain is my best friend.

Bridge is known as “aerobics for the mind.” I also have focused on mentally-stimulating games such as Scrabble and crossword puzzles. I stay social in order to keep myself sharp. I do whatever I can, as I always have in life, because sitting down solves nothing. It’s time to stand up!

There was a day recently when I wasn’t feeling up to going to my evening bridge game, but something inside me told me to go anyway. I ended up meeting a woman whose husband was just diagnosed with Alzheimer’s. They have only been married for five years. It was so important for her to see the information available and have someone to talk to and discuss caregiver issues with. I hope that today’s event will create progressive thinking in the world of bridge. Alzheimer’s creates a devastation of families; everyone in the family unit “gets” Alzheimer’s. Our voices are more powerful together, and we know we will be heard today.

I thank Robin Parker of the San Diego H.O.G. chapter who helped Harley riders set a goal of $1,600 on top of the bridge clubs’ goal of $2,500. I thank Robert Hartman, CEO of the ACBL.  I thank David Walters, the best bridge teacher imaginable, for lecturing today – half of the proceeds of his speech will go towards the cause. I thank Stuart Showalter, president of the Redwood Bridge club. And I thank all of the people who have made a difference in the fight to end Alzheimer’s.

About the Author: Trish White is an avid bridge player participating in Alzheimer’s Association The Longest Day®. 

 

 

Jun 192015
 

I am sitting at a dinner party in Deauville, France, listening to my grandfather recount stories I’ve heard him tell a thousand times before; times spent with Peter O’Toole in the desert, his love affair with Barbra Streisand and with other leading ladies, past exploits at card tables and racetracks.omar1

But this night is different. The stories are off; rich details normally embedded like fine jewels are missing. The characters are colorless and the anecdotes lack grounding in space and time – they just seem to float out of place and order. Attempts at humor have been replaced by an obvious air of anxiety and frustration brought on by his trying to remember.

He’s just tired, I think to myself. He’s been traveling too much. Pay it no mind.

But then he starts the stories over again, seemingly unaware that he’s just finished recounting them.

Something is wrong.

This was my first indication that my grandfather had Alzheimer’s disease, and in the subsequent years, many clues would follow.

omar2It’s the quintessential irony — creating a life filled with cherished memories and relationships only to lose them.

A World Champion bridge player, an Academy Award nominated actor, a man proficient in seven languages with a higher IQ than anyone I’ll likely ever meet…Alzheimer’s does not discriminate in its victims.

It has been a slow and steady decline made all the more apparent by a lack of forward progress towards finding a cure.

So we must unite.

Throughout the month of June, join me in taking the pledge to “Go Purple” for Alzheimer’s awareness and let’s find purplepledgeomara cure together.

Alzheimer’s is a thief — stealing brilliant minds. This disease must be stopped.

 

About the Author: Omar Sharif, Jr. is an Egyptian actor and spokesperson. An advocate for equal human rights, he is the grandson of legendary Hollywood actor Omar Sharif.

Jun 022015
 

My name is Grace, and I am 15 years old. For nearly 10 years of my life, my mother was a caregiver for her two aging parents. My grandmother was broken physically, but my grandfather Jim slowly deteriorated due to Alzheimer’s disease, passing in February of 2014. Watching my grandfather lose his identity was one of the hardest situations my family has ever had to cope with. I live with images of how this incurable disease changed him; dealing with the grief of his passing was not easy.grace2

Ever since my grandfather’s death, I have wanted to do something to raise awareness and funds to combat Alzheimer’s. My opportunity came this year in my English class.

For my 10th grade service project, I had to choose a charity or foundation to volunteer for. Naturally I chose the Alzheimer’s Association. I raised $200 and made phone calls to people who had started their Longest Day teams to encourage them in their activities. After that, I took the next step. I set up my own team for The Longest Day, where I committed to use my passion, swimming, as a tribute to my grandfather and all people who have lost their life to Alzheimer’s. On The Longest Day, I will swim 16 miles to “Swim for Jim” as a symbolic tribute to those caregivers who work from sunrise to sunset to care for their loved ones.

People recognized my passion right away and so many were excited to donate generously to the cause. I have nearly reached the three thousand dollar-mark on my Longest Day Web page, and I can’t thank my donors enough for their tremendous support!grace3

This opportunity to raise awareness and funds for Alzheimer’s is much more than a school project. It’s personal. It is a fight for those who have their memories and identity stolen from them. It is a call for others to support the caregivers, researchers and those who have fought this battle. It is a commitment to remember for people who no longer can. It is also a pledge to honor lost loved ones so their agonizing fight will not be in vain.

I hope you will join me on The Longest Day. I can wholeheartedly say that this experience became part of the healing process for me and my whole family. We now have a sense of closure. The donations given and awareness raised will be instrumental in decreasing the number of people who live the longest day every day. Cherish your memories – support the fight to end Alzheimer’s.grace1

About the Author: Grace Arredondo is from Charleston, South Carolina. She swims for her high school swimming team, the Shadowmoss Sharks summer league team and The City of Charleston’s Southern Marlins Racing Team. She has chosen to use her competitive swimming skills to honor her grandfather, Jim Whaley, by participating in The Longest Day. You can visit her team page here.

 

 

May 142015
 

When I presented Mom with her birthday present, I couldn’t get my phone to record her reaction. The present was a big frame with eight photos of our family, and she loved it. So, what did I do? I took back the present, waited about 10 minutes, and gave it to her again. This time I filmed it—the same, wondrous reaction to seeing all her loved ones is now recorded.

I’m both amused and horrified by my use of Mom’s Alzheimer’s to get what I wanted.

What I really want is my mom back. I don’t want the child-like adult who needs constant watching, who can’t remember how to get dressed or brush her teeth, who thinks washing dishes is running them under a stream of water, who is inactive unless someone engages her in conversation, who does whatever I tell her because she trusts me.

If I could only eliminate her confusion, repair her dying brain functions.

We say goodbye a little at a time to the people we love. Mom is there in body but not in mind. And as she slips away from us, her memories, her life force, her very existence, become hollow. I shower her with love because my feelings towards her have not changed. We are bound by the inexplicable bonds that exist between a parent and a child. She is still my mom.

We’re in a hard transition. She is both present and absent, herself and someone else. It is painful to make the best of it, put on a happy face and care for Mom as if it were not a difficult burden. Sometimes I wish she were more compliant, less ornery, and less needy. Then I feel remorse. The alternative is too awful to contemplate. But it’s coming whether I like it or not. I need to accept and appreciate where she is now for soon she will only be absent.

squirrelThis week, in order to distract myself and raise my spirits, I made sugar cookies. What’s fun about these cookies is the cookie cutters I found—all fun animal shapes, including a moose! Yes, Boris Badenov’s nemeses, “Moose and Squirrel.”

Sugar Cookies
There are many variations of sugar cookies, each with a slightly different set of ingredients. I like this recipe with the added colored sprinkles. You can also decorate the cookies with sugar granules on top.

¾ cup oil
2 eggs
1 cup sugar
1 tsp vanilla
2¼ cup flour
½ tsp baking powder
½ tsp salt

Directions:
Pre-heat oven to 350°. In a bowl, whisk together oil and eggs. Whisk in sugar and vanilla. Add remaining dry ingredients until a soft dough forms. Using a rolling pin, roll dough on a flat, floured surface until about ¼ inch thick. To add sprinkles, place sprinkles on dough and gently roll them into the dough. Press cookie cutters into dough and wiggle slightly so that the shape detaches from the dough. Lift and place on a cookie sheet. When you cannot make any more cookie shapes, gather remaining dough and roll out again on a floured surface. Repeat process. Bake cookies for 10 minutes at 350°.

About the Author: Miriam Green writes a weekly blog at thelostkichen.org that chronicles through prose, poetry and recipes her mother’s battle with Alzheimer’s.  Her unpublished cookbook, “The Lost Kitchen: An Alzheimer’s Memoir and Cookbook” is filled with advice for the novice cook, easy and elegant recipes and home-spun caregiver advice. Her poem, “Questions My Mother Asked, Answers My Father Gave Her,” won the 2013 Reuben Rose Poetry prize. Miriam is a 20-year resident of Beer Sheva, Israel, and a mother of three.

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May 072015
 

The purpose of life is a life of purpose. ~Attributed to both Ludwig Wittgenstein and Robert Byrne

I was a nurse for thirty years. Near the end of my career, I began to notice that I was struggling to complete daily tasks. There was always an excuse; I was tired or had worked too many hours. I began having trouble with my knee and took time off work to have surgery. It was during this time that I started to take note of my problems.

I had days that I called “lights on” or “lights off.” When the lights were off I didn’t know when or what I ate, I had no idea if I slept or how long I had slept. Verbal and written information was hard for me to understand, and I got lost in familiar places. If I only lost my keys on any given day that was a good day.

cynthiaGWhen the lights were “on” I had to clean the mess I had made while the lights were “off.” Once, I went to wash clothes and there were no dirty clothes. I had been wearing dirty clothes for days, unaware of how long this had been going on.

In 2011, I found myself at a stop sign and I didn’t know where I was or how I got there. In that moment I decided to make an appointment to see my doctor. I had an eight-year relationship with my primary care physician and felt she knew me really well. During my office visit, I cried while talking with the nurse, and my physician agreed that the changes I was experiencing were not like me.

dinner

My doctor referred me to a neurologist and on my sixty-third birthday, with my son at my side, I underwent testing and was diagnosed with Alzheimer’s disease. My son asked questions, but I didn’t. I was happy to know there was a word for my problem, and although I know how this disease will end, every day I wake up and accept who I am that day.

pam

In May 2012, at the urging of my son and son-in-law, I moved into a residential community they both felt would be a good fit for me. I would be close to my family, my care team, and the specialists who conduct the clinical trial in which I am a participant. Yet, the most important part of my care team is my supportive children, and I was grateful to be closer to my son.

Shortly after moving, he spent Mother’s Day with me and afterward he wrote me a letter. I cherish this part:

Mom, I don’t want you to worry or be afraid. Let’s enjoy every single day and not think too much about whether you can remember as well as you could in the past. I will watch over you and won’t let anything bad happen to you. If the time comes when we need to do more for you, I will make sure you have everything you need to have a great quality of life. I wish I could change things. I wish I could take your illness for you and I can’t. All I can do is be there for you and love you.

Yes, I have a loving and supportive family. I am a very positive person and if something starts to bother me I ask myself, “Does this really matter?”


Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias is now available for purchase, with all royalties going to the Alzheimer’s Association. Read all the inspiring stories.

I accept my disease and am proud to be a National Early-Stage Advisor for the Alzheimer’s Association. I have made it my goal to inform the public that I live a great life with support from my family. I am very active, and I want to work to change the stigma associated with the word Alzheimer’s. I have met so many wonderful professionals who have allowed me to share my story in an effort to educate others who are dealing with the effects of this disease. With the support of the Alzheimer’s Association, I have advocated for the needs and rights of others with the disease.

I may be just one voice, but together with other advocates, we are unified.

To put an end to this fatal disease, we need to advocate for more research and clinical study participants. As a participant myself, I know I may not benefit from the studies, but someone else will—and thinking about that makes me smile.

As a legacy to my family, I want to be a part of a movement that educates others and helps advocate for people with Alzheimer’s and their families. As this disease progresses, I won’t remember anyone, but I want to live my life so that people will remember me.

 Author: Cynthia A. Guzman

 

From the book Chicken Soup for the Soul: Living With Alzheimer’s & Other Dementias by Amy Newmark and Angela Timashenka Geiger. Copyright 2014 by Chicken Soup for the Soul Publishing, LLC. Published by Chicken Soup for the Soul Publishing, LLC. Chicken Soup for the Soul is a registered trademark of Chicken Soup for the Soul Publishing, LLC. Reprinted by permission. All rights reserved.

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Feb 132015
 

Mark’s basketball career has spanned the entirety of our 20-year marriage. We have moved a lot – experiencing an ever-changing landscape of varying cities, schools, friends and basketball seasons, with invariable ups and downs. My role in Mark’s career has always been to find stability in these times of change, drawing from my relationship with my family. Some changes, however, are harder to face than others.

Nearly nine years ago, my father died of younger-onset (early-onset) Alzheimer’s disease; he was 68 years old. Mark and I were living in Wichita, Kansas with our three young children – Will, 7; Ella, 4; and Leo, 1. I was devastated not only by my own loss, but the thought that my children would not grow up around my father.

Both Mark and I are extremely close with our families and derive much of our identities and strength of character from the foundations of our childhood, specifically from our parents. I grew up in a close family – the kind that sat round the dinner table together and did family chores together. My dad was a huge influence on me and my siblings. I had a lot in common with him; we shared a love of cooking and wine, and enjoyed exercising our creativity. I credit my work ethic, loyalty and family-first mentality to him.

Both my parents had always enjoyed sports, but it wasn’t until I fell in love with Mark that they fell in love with basketball. I was still in college when Mark and I began dating, so Mark met my dad when he was still himself, still the man who raised me, the ever-consummate business man. He and Mark forged their own relationship right away. There was a lot of mutual respect and admiration, a lot of overlapping drive for success despite odds and obstacles in both of their respective careers.

Mark still remembers my dad that way. I am so grateful that he calls upon those memories when sometimes I struggle to remember the man he was before Alzheimer’s. I think of his state during the final years when he and my mother lived in Wichita, when I took on a major role in his caretaking and decision-making. While difficult, mine and my father’s bond was solidified during this time.

When assisting my mother in his caretaking, my biggest challenge was not being able to help him when he was scared. Sometimes I would lose patience with him because you can’t “see” the effects of Alzheimer’s at first. He would look perfectly healthy and like his old self but wouldn’t be able to carry out a simple task like putting his coat on and getting in the car. I wanted to protect him and tell people he had Alzheimer’s because his behavior was so different from when he was healthy. He had always been this big, strong, brilliant, charismatic man and the disease took that away. My mom would always tell me that I had a way with him; he trusted and listened to me. I made him feel safe. That is by far the biggest reward – to give something back to the man who gave me everything.

turgeon-family

Mark and I feel fortunate that, as the basketball coach for the University of Maryland, he can bring awareness and support to a disease set to escalate rapidly as the baby boom generation ages. We feel that we have been given this platform to help make a difference in the fight against Alzheimer’s. No one should have to watch their father or other loved ones suffer from this devastating disease.

About the Author: Ann Turgeon, wife of University of Maryland Basketball Coach Mark Turgeon, assisted her mother in caring for her father, who had younger-onset (early-onset) Alzheimer’s. She shares her story here to let other families know they are not alone—and in hopes of inspiring more people to take action in the fight against Alzheimer’s.

Feb 052015
 

A French writer once said that “a recipe has a hidden side, like the moon.” In every recipe there’s a little something that makes it special, and, hopefully, better. – Paula Wolfert

The symptoms of dementia can vary greatly from person to person. In Paula’s case, it was her response to a simple request that acted as an early warning sign. One day her husband Bill asked her to make an omelet and her reply was: “I don’t remember how to make an omelet.”

For Paula Wolfert, 76, a woman who spent decades mastering the art of cooking cassoulets, stews and Moroccan dishes  – as evidenced by her nine Mediterranean cookbooks and five James Beard awards – this was more than unsettling. “Of all things – an omelet!”

wolfertparis

Studying baking in Paris, 1980.

Not long after that exchange, before her last book was released in 2011, Paula conducted interviews with industry professionals who had received advance copies of her cookbook. During interviews, she struggled to remember the questions asked and had a difficult time responding appropriately. During a visit with her physician, Paula shared her concerns, but the cause of her symptoms was still undetermined. In 2013, after getting a second opinion, it was confirmed that Paula had an atypical variant of Alzheimer’s called Benson’s syndrome.image7

Paula has always been untraditional. “One year on Christmas I made my daughter couscous and my son stuffed pig’s foot! I have always been a bit unorthodox.” Her children were born in France in early 1960s and grew up in Morocco. “Our family had a daily shared mealtime. Those meals helped create a sense of belonging, and I still enjoy preparing food for my children. When my daughter visits, she always asks for a tagine. I have to run back to my book and look at the recipes, but as I cook –sometimes, somehow – memories come back. They may not be memories from that exact day, but memories do come flooding back when I make certain dishes.”

image8

Working on her first book in 1971.

Despite her professional background, Paula grew up in a household where food memories were rare. “My mother didn’t like to cook during the holidays or otherwise and wasn’t adventurous. Her idea of cooking was melon, cooked beans, cottage cheese and iceberg lettuce. I truly have no recollection of sitting around a table with my family. The family I created with my children was different. We had meals together that created powerful memories.”

Today, in addition to her husband, Bill, Paula cooks alongside her son and care partner, Nick. “When I see my children, we live in the now.  I still get pleasure out of talking about food and showing them how to coax and make food come alive. I just can’t get in front of a stove and do it alone anymore. I can still laugh, and my wit hasn’t left me. I don’t think it will. I can’t write anymore; the letters jump around. You can’t dictate a cookbook. That part of my life is over. I can’t turn back the clock, but I also can’t walk away from my friends and family.”

image2

Paula’s husband Bill.

“I may not write cookbooks anymore, but I have a different kind of job now. I have always been a researcher. I researched cultures and food and that part of me has not changed. Today I research ways I can live better. I can’t cure my disease, but I can make living with it easier. I may have to read something five times or more to finally remember some of it, but I do remember some of it if I keep at it.”

According to Bill, the recipe that Paula likes to make most is oxtail ragu, which is conveniently also Bill’s favorite dish. For the first time in a year, Paula cooked for guests – a French family that came to visit – this past holiday season. Her husband helped her plan the menu, which included a spin on his favorite: ragu of duck with prunes and onions, a French favorite from the southwestern region.

Everyday meals aren’t cuisine of the ragu sort. Cooking is very different than it was before Paula’s diagnosis. She cooks three times per week, primarily vegetables that she can freeze and store for later use. She enjoys using Vital Choice wild Alaskan king and sockeye salmon as a protein and incorporates a variety of ingredients into her diet, including Brussels sprouts, olives, pomegranates, fennel, red pepper and coconut oil.

Paula has simplified her cooking due to changes in her sense of taste and smell.

“Some things I can still smell, like rosemary. I can’t smell roses. I can’t smell smoke. But I am still so focused. When I wrote my books, I would learn the language of the country I visited. When I went to Sicily, I hired someone to teach me Sicilian. I learned enough to charm people so that they would show me things they never showed anyone else. I did this for decades. Now I have to put the focus on taking care of myself.”

Paula at her desk.

Paula at her desk.

“The reason I contacted the Alzheimer’s Association is because I could not take care of myself alone,” she says. “I needed guidance.”

Today she puts a focus on clean living and staying social with family and friends. She has lost 25 pounds due to frequent treadmill and yoga exercise. She drinks a smoothie every day chock full of greens and vitamins. She dines with a group of women her age who are still in the workforce (the “Lunch Bunch”) once a week. “I consider what I am doing to take care of myself to be working”, she says.

“The thing that’s most important to me is that I live in the now. I am not the professional person I once was, and I can’t turn back the clock, but I do what I can now to live my best life. After my diagnosis, I felt sorry for myself for about 15 minutes. I am very proud of what I have accomplished in my life; I feel very lucky to have the life I have had. I have lost some things but not others.”

One of the first warning signs of Paula’s disease was that she would watch favorite shows like “Mad Men” and couldn’t remember what she had watched the following day. What did stay with her is a quote from the show’s main character Don Draper. “This quote struck me because it made me remember a time of my life where I had the feeling of love. I live in the now, but I also want to live for the then and the future:”

Nostalgia – it’s delicate, but potent. Teddy told me that in Greek, “nostalgia” literally means “the pain from an old wound.” It’s a twinge in your heart far more powerful than memory alone. This device isn’t a spaceship, it’s a time machine. It goes backwards, and forwards… it takes us to a place where we ache to go again. It’s not called the wheel, it’s called the carousel. It lets us travel the way a child travels – around and around, and back home again, to a place where we know are loved. – Don Draper, “Mad Men”

 

About Paula: Paula is a member of the 2014 National Early-Stage Advisor Group. She is an advocate, wife, mother, and chef whose career spanned more than 40 years. For more than 20 years, she authored a column in Food & Wine magazine and was featured in numerous publications including Gourmet and Bon Appetite. She helped start a Memory Cafe to encourage social engagement with others living with the disease. She lives in Sonoma, California with her husband Bill.

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