Sep 162015

Seattle Seahawks’ J.R. Sweezy is not the tough offensive guard most people know when he’s around his wife Gissell. “She’s everything I ever wanted. I became so much happier when she came into my life. She’s my support system,” he says, lowering his gaze shyly, petting their black Labrador Otis.

Gissell laughs, returning his smile. “There’s that soft side of him that people don’t see,” Gissell says. “I think everyone sees him as just a football player. Not me. That’s just what he does for a living.”

J.R. and Gissell met in sixth grade after she and her family moved to Mooresville, North Carolina. “We were in homeroom together,” said Gissell. “We would laugh and talk, and we became friends.”

Although Gissell wasn’t in the same popular crowd as J.R. in high school, they continued their friendship and attended senior prom together. “We dated and broke up three times from high school into college,” said Gissell. “I was done after the last one,” she said, as she shook her head laughing.

Gissell attended Peace College while J.R. attended NC State University to play football, following his paternal grandfather Roger’s footsteps. “It took time for me to grow up and realize how special she is,” said J.R.

They led separate lives for five years until running into each other at Duckworth’s Grill while visiting family. “We talked for a month after that and then were back together,” said Gissell. “I felt peace. When we’re together everything makes sense.”

J.R. nodded his head with assurance. “We make each other better.”seahawks

Soon after getting back together, J.R. was drafted and selected by the Seattle Seahawks.

“Football is something I’ve always loved, and I’m blessed enough to do it,” said J.R. “We’ve won a lot of games because of our fans, the 12s. It’s the only place like that in the entire NFL, and I’m lucky enough to call it home,” he said about Century Link Field.

“I love it. I get goose bumps just thinking about running out of that tunnel. The 12s are so loud; they’re great fans—they set the mood and keep us going.”

J.R. believes the 12s will also support him in raising awareness about Alzheimer’s disease. “They go above and beyond, and I think they’re doing that outside of football too.”

J.R.’s Papaw Gene, a successful businessman, was diagnosed with Alzheimer’s disease nine years ago. After seeing his maternal grandfather’s drastic decline last April, J.R. and Gissell decided to create #the12s Walk to End Alzheimer’s team to raise awareness nationally for Alzheimer’s disease.

“If we are raising money and have the right people researching and understanding it, maybe we will find a cure one day,” said J.R. “I want to raise awareness from coast to coast. We’re helping now for the future. It’s too late for Papaw Gene, but not for our kids.”

J.R. only gets to visit his papaw two or three times per year, but even now in the late stages of Alzheimer’s disease, Papaw Gene will sometimes ask, “Is that the boy that plays football?” and reach for his Seahawks hat.

Both of J.R.’s grandfathers were prominent role models in his life. His Grandpa Roger not only played football, but exemplified hard work and taught J.R. “not to doubt myself, to do what is right and to be my own man. He told me that ‘til the day he died,” said J.R.

They were successful men who led by example. “I’ve learned never to take a day for granted. God’s the only one who knows the in-story.” said J.R. “Just like in football, we can’t take a day for granted, because it could all end in one moment.”

Although J.R. was at the Seahawks’ hotel in La Jolla, California preparing for their third exhibition game on the afternoon of August 29, Gissell was at Seattle University Park with her mother-in-law, grandmother-in-law and other Seahawks’ wives and girlfriends representing #the12s team and raising awareness about Alzheimer’s disease.

“We’re soul mates living the dream,” said Gissell. “Every day he works to be a better man—in football and in our personal lives. I’ll do anything for him because he’s the love of my life.”

To read more blogs from the Alzheimer’s Association, Western and Central Washington Chapter, please visit this link.

Learn More

Sep 112015

Of the 5 million people in this country living with Alzheimer’s, about 200,000 have younger-onset/early-onset Alzheimer’s. It is not an “old person’s” disease. Some people are diagnosed in their 30s, 40s or 50s. One of them was my wife – my sweet Melinda.

Melinda is the reason I Walk to End Alzheimer’s.

Melinda was once a trial lawyer, a scratch baker, an excellent cook, needlepointer, crafter and seamstress. These talents, along with her incredible intellect, engaging smile, laughter and her love for her family made her a wonderful mother and wife.


In 2010, Melinda was diagnosed with younger-onset Alzheimer’s at the age of 54. We were shocked and frightened.  For whatever reason – which I cannot explain but am thankful for – Melinda did not seem to dwell on her diagnosis. She remained cheerful in the face of the disease.

Melinda was in an adult day center four days per week between April and August of 2014 so that I could continue to work to support our family and retain our health insurance coverage. On September 2, 2014, I made the hardest decision of my life, determining that she needed to be placed in a long-term memory care facility.

Younger-onset Alzheimer’s is life-shattering. Younger families have children who see the progression of the disease, and therefore experience the ongoing loss of a parent. Breadwinners in the prime of their careers struck with the disease become unable to work, and if they haven’t worked long enough, they won’t be entitled to disability benefits. Families in the prime of their lives are destroyed by a disease that never takes a day off.

bruce2I Walk with the hope that other families will not have this fate.

The impact on our sons Matt and Ben is impossible to measure. Despite the loss of the mother they once knew, they adapted, rallying to help both her and I deal with the day-to-day challenges we faced.  Thankfully, this has not impacted their education. Matt graduated with the highest honors and found employment with a Big Four CPA firm.  Ben is succeeding at the School of Engineering at Mizzou.  I hope they are able to take away from this journey the love, patience and devotion I have tried to give to their mom and that their experiences will make them better people, as I know mine has made me a better husband, father and person.

I Walk in memory of Melinda.

My sweet Melinda passed away on January 14, 2015. I miss her terribly. I believe she is free from this insidious disease that shows no mercy, and that she is now at peace.

Since Melinda’s diagnosis in 2010, I have immersed myself in Alzheimer’s science and research, attending symposia featuring eminent scientists and physicians whose mission is to find the cause and, ultimately, the cure for this dreaded disease.

Melinda’s Memory Warriors Walk to raise money for research and a cure.

There is an oncoming avalanche facing our society. Of the top 10 causes of death in this country, only Alzheimer’s cannot be prevented, cured or slowed. The thought of losing one’s memory and ultimately one’s dignity is frightening. By participating in the Walk to End Alzheimer’s, we are letting the world know that now is the time to increase the awareness of a disease that will cost our government trillions of dollars in the coming decades if a bruce1treatment or cure is not found.

This is a real crisis for our nation and for the world as a whole. The avalanche is out there, and it will be here before we realize it. Join me today by lending your voice and your legs to the cause in the Walk to End Alzheimer’s – for me, my sweet Melinda, and all of those who live with this devastating disease.


About the Author:  Bruce Friedman Walks on team Melinda’s Memory Warriors. He was a featured speaker at the Alzheimer’s Association St. Louis Chapter’s 2015 annual “An Affair to Remember” gala fundraiser and was recently nominated for a position on the National Advisory Council on Alzheimer’s Research, Care and Services. Bruce was selected in 2014 as the Best Lawyers’ Lawyer of the Year in St. Louis in the area Family Law.

Learn More

Aug 202015

My mother told me, when I was rather young, that no one’s soul ever dies. I imagine that each memory is a small flame, burning amidst so many others. They eventually create a swirling, shimmering glow, illuminated by love, flying up, up, up, until they light the sky with a brilliant glow.

As we walked through the halls of the clinic, I spotted a ninety-year-old woman on her bed, eyes wide, mouth open as if trying to scream. No sound came out. Her breath came in heavy gasps. A shriek, as a patient slumped over in his wheelchair. His orange juice splattered across his white t-shirt. A moan, as patients cast slow, lingering glances at random objects, their tennis-balled walkers gliding slowly across the cold, tile ground. A yell. A patient’s flare of anger at an invisible phantom, lurking behind the humming refrigerator. A groan. Patients forget, their old minds giving way beneath the weight of their disease. A cry. Another memory casually fizzled into the air. Wearing a red uniform, a nurse guided us into another depressing room, then another, and it seemed like the corridors and rooms were endless. Dark beige walls and dim lamps created a somber, gloomy effect, which is probably an understatement. Finally, we reached the hallway which led to where my grandmother was. Maliha, my grandmother.haris2

Silently, we walked to the television room, where there was a large group of elderly, white haired men and women, each focusing on the TV, although it was clear to me that they had no idea where they were or what was playing on that strange, small sound omitting box. Scanning the room, I finally located my grandmother in the crowd, sitting and chatting with another patient in her native language, Farsi. Because she was the only one in the entire room who was saying anything, we walked over towards her. Once she looked up at us, my mother and father bent down and kissed her on the cheek, and, as usual, there was not a significant sign of recognition radiating from her. However, she did say hello and converse with us; some friendly habits die hard. My sister gave me the usual quizzical looks whenever my grandmother would address her, due to my grandmother’s no longer sensical or straightforward phrases. Then, she looked me in the eyes, an unfamiliar look on her face. Studying her very closely, I noticed a food stain her collar. Her hair was turning gray. Her eyes, though, were the same as ever. She said to me, “What is your name, honey?” Each word came out with a struggle; she was slowly losing her English. I remember the precise way she said those four words: Long, drawn out syllables and consonants fighting, clawing their way out of her quivering lips. This question was common. I usually simply replied and told her my name over and over. However, it was as if suddenly, I could not speak; my whole body went rigid. Tears welled up in my eyes, and my throat constricted. Slowly, my palms went damp, and, in a long, reluctant, moment, I quietly mumbled my name to her. Distractedly, she nodded and smiled, clearly having no clue as to who I was. She continued to speak nonsensically, but I could not take it anymore. Feeling suffocated, I excused myself, and I burst out of the room and went to the bathroom.

Perhaps I should not admit it. Maybe I should hide it out of fear of being judged, but I will not. I will tell everyone: I cried.

harisNever again would my grandmother recognize me. It is not fair that someone who was once a kindergarten teacher, who had done so much for me and my mother, was now robbed of what was so rightfully hers, her memory. Nothing belongs to one person more than their own thoughts and memories, but hers were taken from her. I could not, perhaps still cannot, understand why she was chosen, why she was the one to lose her own beliefs, theories. It is one of the questions I would ask God, or whoever or whatever took my grandmother from me.

When I felt more relaxed and slightly less distraught, I walked back out. Quietly strolling down the hall, I stopped at her room. No one was there because my parents, sister, and grandmother were in the television room. So, slowly, I crept inside and sat on the bed. Reaching under her bedside table, I brought out a box my mother made for her, filled with pictures of my grandma, mother, uncles, aunts, cousins, and friends. As I looked, I suddenly stopped. In front of me was a picture of my grandmother. Standing in front of a tree, she looked to be in her mid thirties, with long black hair. All my life, I had been told that my grandmother was a beauty, so I was not surprised by her striking appearance. Instead, I was transfixed by the depth of her calm, knowing gaze, and the picture revealed a profoundly subtle side of her that I had never seen in other pictures. Her smile showed no teeth, just a small upward curve of her thin lips, and there was, somewhere, a shimmering inward beauty radiating from her. That image woke something, it illuminated something, a rare acceptance that I had not experienced since before my grandmother was diagnosed.

Out of nowhere, I remembered a quotation from her favorite poet, Hafiz, that she would always recite: “Even after all this time The sun never says to the earth, “You owe Me.” Look what happens with A love like that, It lights the Whole Sky.”

Looking at the picture of my grandmother, a flood of memories of how she was before the disease rushed back to me. How her eyes twinkled when telling a story, how she would hum when music was playing, how delicious her cooking was, how much she loved me and my sister and my mother, and not once did she ever say, “You owe me”. Not when she raised and cared for my mother, nor did she say it when she watched and gave advice to me and my sister. Now, she was the vulnerable, weak one, who needed our love more than anything in the world. So, we gave our love, as freely and plentily as she had given her love to us. Hiding the picture in my back pocket, I carefully closed the lid of the picture box. Stowing it beneath the table once more, I walked out to the television room.

Everyone was preparing to leave, so I followed them. When we left, I looked behind me, and for just a brief second, I saw that familiar look of understanding, that twinkle in her eye, the calm smile. It was like old times, when she would tell stories and throw her head back and laugh with me. In an instant, she was Maliha again. But, as all things do, it left.

I am glad, if not relieved, that the last image I can conjure of that day is of my grandmother’s eyes. They are sincere, genuine, and tender, welcoming me into her warm, loving embrace. They are not from a picture, or any clear memory I have of her. Just a figment of my imagination. Sunlight brightens the right side of her face, and I can tell she is outside.  I can almost smell the Earth around her and hear the grass rustle with the soft breeze as the sun slowly sets. I cannot say the image is clear. In fact, it is almost a blur in my memory, like an unsteady camera took the picture, only seen through an unclear, perfect haze. A slight glare from the sunlight taints the view. My grandmother’s deep, brown eyes are wrinkled at the edges, hinting to a smile somewhere else. The image just cuts off abruptly, so I cannot see her thin lips, her smile.

But I am not sad. No, no, all is well. No sadness or grief burdens me. She is there, my grandmother, still there, somewhere. That image makes me happy, not sad, because I know, even though I cannot see it, that she is smiling at me, a majestic, radiant smile.

About the Author: Haris Hosseini, 14, won a top prize in the National Council of Teachers of English Promising Young Writers Program with this essay. He and his family participate in Walk to End Alzheimer’s on Team Kayoumy. They walk in support of his grandmother Maliha Kayoumy, as well as countless others living with Alzheimer’s disease.

Haris’s father is New York Times best-selling author Khaled Hosseini, author of The Kite RunnerA Thousand Splendid Suns and And the Mountains Echoed.

Learn more:
Walk to End Alzheimer’s
Alzheimer’s Information for Kids & Teens
Inside the Brain: An Interactive Brain Tour

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.

Learn More:

For LGBT Caregivers

Caregiver Center

Take the Purple Pledge!



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

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 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.

Learn More:

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.


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.


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.

Learn More:

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.


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.

Nov 212014

Grandma always made you feel she had been waiting to see just you all day and now the day was complete. ~Marcy DeMaree

My grandmother was diagnosed with the early stages of Alzheimer’s disease when I was in fifth grade. At that point in my life, I was a kid. I was selfish as all kids are, so I didn’t think twice about it. I had no idea how it would eventually affect my life, as well as my family, in such a large way.

I have a very tight-knit family, and my grammy is the glue that holds us together. I remember going to my grandparents’ farmhouse every moment I could when I was a kid. My grammy would always make me chocolate milk and a peanut butter and Fluff sandwich. We would watch Winnie the Pooh movies and color—my grammy and I both love the smell of a new box of crayons. Sometimes, if I were lucky, she would take me to the barn to feed the calves or to see the new kittens. Little did I know, these would be the memories of my childhood that I would miss the most.hands

As I grew up, I noticed my grammy changing. At first, it was just little things. She would forget where she set her book, or she couldn’t find her purse. Once again, I didn’t think it was serious. I could never have guessed how it would progress, transforming my grammy into someone I could hardly recognize.

There was one incident in particular that was my wake-up call. I remember thinking, “This isn’t a joke, and my grammy isn’t my grammy anymore. This is a serious disease.”

About three years ago, a tornado went through our town. Although it was heading straight for my grandparents’ farmhouse, it died down before destroying my childhood sanctuary. My father and I went to visit my grandparents the day after the storm, just to make sure they were okay. I went inside to find Grammy. I gave her a hug and took my regular seat on the couch across from her. We passed the time by talking for hours on end, about anything and everything that was on our minds. The power was out, and it got dark in what seemed like a matter of minutes.

Then, Grammy turned to me, and with empty eyes that stared right past me, asked, “Now you’re graduating this year, aren’t you?” I was a freshman, so I was confused why she was asking me about graduation. Grammy was the type of person who could tell you the exact date and time when every one of her grandchildren came into this world. Her innocent question caught me off guard. I assured her that no, I was not yet a senior; I still had a few years until graduation, and casually moved the conversation along.

Soon, my father asked if I was ready to go home. I silently nodded my head yes, and we headed out. As soon as I got into the car, I started to cry. My father asked me what was wrong, and all I could manage to blurt out was, “Is Grammy going to be at my graduation?”

It took him a long time to come up with a response, and when he finally did, I heard the sadness in his voice. “Yes. She may not know where she is, but she will be there, no matter what.” I looked at my father, and I saw a tear running down his cheek. I had never seen him cry. The rest of the car ride home was silent. When we finally arrived home, I went straight to my room. I locked my door and I cried for hours. That night made me realize that things were going to start changing fast.

Ever since that talk with my grammy, I have matured and stepped up. Her Alzheimer’s has progressed to about stage 3 now. She is at the point that she can’t see what is directly in front of her. When I see her get that look that says, “I don’t know where I am or what I am doing,” it’s my automatic response to help her by getting her a plate of food or easing her into a chair.

At first, I didn’t notice the strange looks I got from the other members of my family. Then, last summer, when I was cutting Grammy’s food at a family picnic, I looked up and saw all my aunts, uncles and cousins looking at me. I just ignored them for the moment and went back to helping Grammy. Later on, I asked my mother why they looked at me like that. She explained that they still picture my grandmother as the one who takes care of everyone else. They had not yet realized that the roles had switched; after years of being the sole caregiver of the family, she was the one who needed their help.

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.

Now, at sixteen, I have a better understanding of Alzheimer’s disease. My grammy’s deterioration has had a huge impact on my family and has put a lot of stress on us all. It greatly upsets me to know that one day Grammy will no longer be able to look at me and say, “That is my granddaughter, Kayla.”

At my graduation, when I am sitting on the stage waiting to receive my diploma, I will look out over the crowded gym and see Grammy there, sitting with the rest of my family. She may not understand what is going on, but she will be there. After the ceremony, I will find Grammy in the huge swarm of people, and I will hug her. I know she will forget me someday, but I am not dwelling on that fact. For now, I try to cherish the good days and to get through the bad days as best I can. She will always be my grammy and I will always be her granddaughter.


Author: K. Thorp

Author’s note: Since the original version of this story was written in 2011, I graduated from high school. I am happy to report that I was able to give my grammy a hug as I walked out of the gym. As my father promised, she made it to my graduation.

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.

Learn More:

Oct 302014

In April 2013, Vern Gillmore was diagnosed with early-stage Alzheimer’s disease. When Vern first started to experience the warning signs, he was not prepared to hear the words “Alzheimer’s disease.” Today Vern and his wife and care partner Karen are working together to educate others about the disease while facing their daily challenges head-on. They are just one couple whose story shows the power of love and teamwork during National Alzheimer’s Disease Awareness Month.vk1

In Vern’s Words

I have been athletic all my life. I couldn’t accept not having a healthy body. I’ve always prided myself on physical fitness and staying in good health, and suddenly I had anxiety and double vision and difficulty using familiar devices like the home computer.

I was a volunteer in disaster response, and when you work in those situations, you have to be able to make quick decisions. I volunteered during Hurricane Sandy in New York and realized when I returned home that I wasn’t as quick or alert as I should have been. I didn’t want to hurt people who were suffering by making a bad decision – that would have torn my heart out. I realized something was wrong with me. My mother and brother had Alzheimer’s, but I was in denial that the cause of my symptoms could be the same.

I have accepted that I have Alzheimer’s. I handle my frustrations by keeping busy. I love taking my dog outside, running her hard for an hour and see her enjoy the exercise as much as I do. Her happy wagging tail makes me happy.

At first I didn’t want to share my diagnosis with others.  I was embarrassed and ashamed. But then I realized that I didn’t do anything wrong to cause this diagnosis. Things have changed since my diagnosis. I now look forward to being able to talk openly about my Alzheimer’s. I now speak at churches, city centers and hospitals in my area because I know that many people are uninformed and that the general population needs to understand and learn more about Alzheimer’s disease.

My wife Karen is my care partner. She is observant and sharp. She doesn’t miss a beat.  She is why I was able to get back to what matters: I volunteer, participate in the Walk to End Alzheimer’s, and stay involved in whatever capacity I can.

In Karen’s Words

Vern and I met through a newspaper advertisement in the San Francisco Chronicle during the ’90s. We were married for 20 years before the Alzheimer’s diagnosis.

I am the worrier in the family, vigilant 24/7. On a typical day, I manage our schedules and instill safe habits. Vern sets up his medications and I double-check them. I ask him the important questions before he goes out: do you have your wallet? Keys? Phone? GPS? We keep a list of phone numbers available should he become confused or need help when he goes out.

I have found the Alzheimer’s Association website to be a gold mine. It is simple – there is so much information on Alzheimer’s disease and it’s easy to read and understand. I chip away at the website, read books, and subscribe to neurology journals.

I think it is important for care partners and caregivers to know that it doesn’t make you a bad person when you experience frustrations. One of the biggest challenges I have come across is the changed communication style between Vern and I. It takes a lot of energy and never-ending patience to not take things he says or does personally.

When we went to a support group, it was the first time I didn’t feel all alone anymore. Everything I had been thinking and feeling was validated. Other people were experiencing the same emotions I was. I talked to people who were at the same place I was as a care partner and it gave me a renewed sense of energy.

Vern has renewed energy as well; he is now very interested in educating people about the disease as an Alzheimer’s Association National Early-Stage Advisor. He never really had a hobby other than running, and volunteering; but he has one now. His hobby remains volunteering, but he has added talking about Alzheimer’s and educating the public about how this disease impacts individuals and families.vk2

Vern and Karen’s story continues. And they are not alone.

In 2013, 15.5 million family and friends provided 17.7 billion hours of unpaid care to those with Alzheimer’s and other dementias – care valued at $220.2 billion. More than 60 percent of those Alzheimer’s and dementia caregivers and care partners are women. Karen is just one of millions who found resources that have helped her on her journey as a care partner.

Vern Gillmore is a member of the Alzheimer’s Association 2014 National Early-Stage Advisory Group (ESAG) and is actively involved with the Utah Chapter of the Alzheimer’s Association. As an Advisor, Vern shares his story to raise awareness about Alzheimer’s and help reduce the stigma attached to the disease.


Learn More: main site  |  Research  |  Advocacy  |  Care and support  |  Message boards  |  Disclaimer  |  Donate  |  Contact us  |  Sign up for e-news
© 2011 Alzheimer's Association | Blog Suffusion theme by Sayontan Sinha