Apr 272016

Being a mom is no easy task. It involves headaches, backaches, heartaches and plenty of exhaustion. It can also be one of life’s greatest joys.

Being a caregiver is a difficult role. Approximately two-thirds of caregivers are women, and over one-third of dementia caregivers are daughters.

We know that mothers and daughters share a unique bond, and this Mother’s Day, we are celebrating mother-daughter relationships that are truly as unique as they come. Watch these videos to hear women with Alzheimer’s in conversation with their daughters about motherhood, their most important life lessons and living with and supporting each other through the journey that is Alzheimer’s.

Carol and Lydia:

Pat, Lita and Laura:

Barb, Caroline and Kimberly:


View the full playlist and watch all the videos at this link.

Feb 112016

In honor of Valentine’s Day, we are featuring video blog stories of couples who are dealing with Alzheimer’s. Setting any commercial hype around the Valentine’s Day holiday aside, love is all that really matters. Love is what brings couples together and helps them build lives together. Love is what keeps a care partner going on the difficult days. Enjoy the videos below to learn what Valentine’s Day means to those living with Alzheimer’s, from wedding days and lifelong commitment to the simple and sweet ways they show each other love on a daily basis.

Angie and John discuss John’s special way of showing Angie his love on the Valentine’s Day holiday before and after his Alzheimer’s diagnosis.



Nancy and Rod reflect on the best parts of each other and what they love most.


Tracy and Jennifer talk about getting married and the importance of being there for one another for the rest of their lives.

These videos originally appeared on www.alzheimersblog.org.
Jan 122016

Let me start by simply saying thank you! Thank you for your tireless work in the medical field. You may be prescribing or handing her medication, and checking for side effects. Maybe you are the nurse’s aide who helps her get dressed in the morning and reminds her where the dining room is. Are you the social worker who takes my concerned calls? Or the lab technician who draws her routine blood work? Maybe you are the one who did her chest X-ray when she had that horrible cough.dil

Whatever role you play in the care of patients with Alzheimer’s disease, please know that I see you. I see how you care about and even love her. I hear you lovingly call her “honey” and “sweetie” and laugh with her when she is confusingly silly. You are so important in the life of a patient with Alzheimer’s disease.

I am a healthcare professional myself, a nurse, but first I am human.  I am the daughter of an amazing woman who has been stricken with a horrible disease. I would like you to see the person my mom was, not the person she is now. Everyone with Alzheimer’s disease has a life story behind them. I would like you to hear Mom’s. She had a life before this disease took her away from us and into your care.

My mother is one of 15 children, and was raised on a farm in upstate New York. Of those 15 children, seven of them have died from, or currently have, Alzheimer’s disease. Our family suffers continually as we watch our dear mother fade farther and farther away from us. I hope you realize, that sometimes, you are not only taking care of my mom, you are taking care of her family. That sometimes your words comfort us and sometimes they anger us. We are really doing the best we can with this very important loss in our life.

So thank you for taking a step back — to see who my mom was before Alzheimer’s — as you care for her every day. And thank you for taking the time to get to know the stories of all the patients in your care with this disease. I bet you will find they led interesting lives. Please find the joy in them.

They need you so much. They need you to see them, to see they are just as human as you are. They need kindness and respect. They need you to help maneuver their very confusing days. They need dignity. They need silliness and smiles, compassion and love, patience and hugs. They need you, and their families need you.

About the Author:

Christine Dileone MSN, RN, is an Assistant Clinical Professor at the University of Connecticut School of Nursing.  She uses the resources of the Alzheimer’s Association in her teaching, specifically on communication techniques with dementia patients to maintain dignity.  She is a Ph.D. nursing student at the University of Connecticut, and plans to continue research with individuals with Alzheimer’s.  She coordinates a monthly Alzheimer’s support group and is actively involved in the annual Walk to End Alzheimer’s® as well as The Champions in the Fight Against Alzheimer’s Women’s Campaign.


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Dec 092015

“I don’t know if I’m lost or not,” Mom said as walked in the city. We were holding hands, the sun gracing us with warmth, the sheltering sky bright and blue.

I keep wondering what it’s like to feel that everything around you lacks substance, that what you knew a minute ago is now no longer familiar. What happens when your depth perception goes, and the general hubbub of the city becomes not just loud, but physically overwhelming? Or when you’re constantly feeling like something is missing—your bag, a shoe, your young child—but you don’t remember what it was or how to explain it.miriamblog

The other day as I was driving aound town, I suddenly realized I didn’t know where I was going. I could not remember how to navigate from point A to point B. The information I relied on was missing; it felt utterly blank inside my head.

Compared to some, Mom is doing great. She can still function in the world, to a lesser extent. We had a strange conversation at lunch where she asked me if my mother sang to me as a child. Who was I in her eyes, I wondered? Not her daughter. Not her sister. Who could I have been?

Sometimes it is enough to know that she enjoys my company. As I enjoy hers. As I leave my house each Tuesday and set out on my journey, I start narrowing my day’s focus. I put aside other thoughts, other chores, other aspects of me. I pack away my ego. I steel myself to the mystery, delight, and heartache of being with my child mother.

As we light the fourth candle of Chanukah tonight, let the light that shines so brightly from our individual flames light the darkness that is Alzheimer’s. Let us bring our precious loved ones into the light with us and treat them as kindly as we can.

I couldn’t let Chanukah pass by without making doughnuts. I love those ubiquitous fried dough balls. But who needs 600 calories every time you eat one! It’s not really about need, I know, but there are alternatives if you want to indulge without the shemen, oil, making you shamen, fat.

No-fry Doughnuts

These doughnuts are nearly as good as the real thing—sweet and light, and a whole lot fewer calories. Makes 12-16 bite-size doughnuts.

1 cup soy milk
¼ cup oil
¼ cup date honey
½ Tbsp yeast
1 tsp salt
2-3 cups flour

Coffee Glaze:

1 cup powdered sugar
2 Tbsp prepared coffee

Chocolate Glaze:

½ cup chocolate chips
½ tsp vanilla
½ tsp water


Heat soy milk, oil and honey in a small saucepan. Bring to a boil then let cool. In a large bowl, mix flour, yeast and salt, and form a small hollow in the flour. Pour warm milk mixture into bowl with flour and mix. Kneed, adding flour if needed, until dough is springy to the touch but not sticky. Form dough into small round balls and place on baking sheet, making sure to leave room for them to rise. Let rise in warm room for up to 1 hour. Bake at 350° for 10 minutes. For toppings: Coffee—Mix 2 Tbsp prepared coffee with 1 cup powdered sugar. Stir to remove lumps. Chocolate—Combine ingredients in a microwave-safe bowl and cook on high for 40 seconds. Stir to melt all the chips. Dip rounded top of doughnuts into one or both mixtures, then let sit so glaze will harden.

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. You can visit her Facebook page here.

Nov 182015

Laura HanniganIt’s a lot easier to say change isn’t easy than it is to experience change yourself.  I recently found this out firsthand when I said goodbye to friends, residents and coworkers at Brookdale Hillsborough, where I served as the Clare Bridge program manager for two years. In becoming the new executive director at Brookdale Hamilton, I wouldn’t be far away geographically, but away from the “family” I had grown to love.

Clare Bridge is Brookdale’s individualized and person-centered program designed to meet the specific needs of those living with Alzheimer’s and dementia. We celebrated many daily moments of success at Hillsborough, including the success of our Hillsborough Walk Team’s efforts and fundraisers.

Brookdale Hillsborough WalkOver the past three years, the Hillsborough Walk Team picked up momentum and grew from raising $600 the first year, $1,800 the next year, to $6,000 with matching gifts in 2014.

Brookdale working TogetherWalk to End Alzheimer’s is an energizing event that we all look forward to all year long. It was a chilly day this year, but our hearts were warmed by the incredible crowds and inspirational speeches, as people proudly carried team banners. We were all so honored to be part of this impressive turnout supporting the Alzheimer’s Association. Words cannot express the warm feeling we all shared and carried home in our hearts from hearing the speeches, receiving the flowers, and for sharing such a special day with so many people.

After this year’s Walk, we asked residents, their families and each other for additional fundraising ideas. Boy, did we get some good ones! Our tireless team entertained guests, prepared and served great food, decorated the building and made these events a wonderful time for all. A silent auction was our biggest hit.

Brookdale Taking in the Autction Bids

The silent auction really was a family affair.  Residents, their families and Brookdale associates donated all types of items to be auctioned off.  From hand knitted afghans to new appliances and Waterford crystal, the spirit of giving filled the community.  It was lots of fun and, at times, seriously competitive.  Our assisted living resident Roz and a Clare Bridge resident’s family helped man the silent auction, challenging others to outbid each other, and thus encouraging families to donate more to this great cause.

Brookdale Families Enjoying Silent Auction

Between our Walk and our other fundraising events, I couldn’t help but feel an overwhelming sense of pride in the Brookdale Hillsborough family. I, like so many others, have had family members who have had Alzheimer’s. I was touched by my grandmother’s experience and by the rough time my fun-loving uncle had with the disease.  When I play a tiny part in helping someone live at the highest level they can, I am so touched by the moment, and know I’m getting far more than I give.

Laura Hannigan and her Brookdale team of community associates, residents and resident families exceeded their wildest fundraising dreams for the 2015 Walk to End Alzheimer’s.

Oct 272015

I first met my now-wife Shannon at work. I was her supervisor, and since she knew the responsibilities of the department inside and out, I leaned on her for assistance.

We started to get to know each other on a more personal level and then we started dating. She asked me out – I had no idea she liked me in that way! After dating for some time, she took me to Disney World and “proposed”; we had a beautiful wedding on the sands of Pensacola Beach by the Gulf of Mexico and rest is beautiful history.

Learning of my diagnosis sticks in my mind, but not due to feelings of sadness. I was focused on the beauty of my wife. After I asked my neurologist if I had Alzheimer’s and he said “yes,” I remember crying uncontrollably. All I could think of at that moment was what my mother was going through at the time. (Brian’s mother died of Alzheimer’s.) Shannon sensed that. She took my hand and said, “I love you and you will NOT go through this alone. I will always be right here.”

Since then, she has beautifully kept her word.brisha

Before my diagnosis, we travelled a lot; short trips, cruises, trips to New Orleans (my hometown) or Fayetteville, NC (hers) and our favorite destination, Disney World. I used to tell her: “I’m your driver, you’re my navigator and we will go wherever you want to go.” We laughed a lot.

Sadly, the travelling had to stop due to finances. When both of us were working, we could basically do whatever we wanted. That changed when I was no longer able to work. Shannon became the sole financial support. We had to downsize in order to maintain a healthy lifestyle for our college-aged daughter and our son in high school. Shannon has had to adjust to my mood swings, my confusion, my argumentative moments (wanting to do the things I used to but can no longer do, like driving) and losing part of who I used to be.

She has done it all with no complaints and with only unconditional love. She is simply amazing. I’m not sure what I did to deserve her.

Shannon’s biggest strengths are consistency and loyalty. When she makes a commitment, whether it’s professional or personal, she sticks to it – and expects everyone to do the same. These qualities have allowed her to reach a position of great responsibility as an operations manager for a realty company. Her job is hard work and requires long hours but she does it in order to provide for her family. I admire her every day for her strength as a person.

Her personality is a mystery to most but not to me. She is loving, tender, somewhat adventurous, quiet and the funniest person I have ever known. She doesn’t know she is funny, but her dry sense of humor keeps me in stitches most of the time. She talks back to the TV, she figures out who did it on the ‘Who Dunnit’ shows long before the plot is revealed and she loves the ID network. We still laugh a lot, which is wonderful.

I want to thank her and all caregivers. Caregivers – I saw how you took care of my mother, my father, my grandfather and my wife’s grandmother. It takes a certain special type of person to be able to do what you do, but you do it day in and day out. You never complain, you always wear a smile and you’re always there, taking care of your own family or of other families you treat like your own. You are unbelievably wonderful people and for those who are unable to thank you themselves, I thank you!

We can honor caregivers and care partners by giving them something they probably need or deserve – a period of time, whether it’s a few hours or a few days, to have time to relax. This could be a spa treatment, a weekend at a hotel, a manicure/pedicure. Don’t be afraid to ask a caregiver what they want so that you can give them something you know they would enjoy.

I want my care partner Shannon to know that plain and simple, she is my hero.

Shannon, I hope you never feel that the things you do go unnoticed or unappreciated. The vows we took were for better or for worse, in good and bad times, in sickness and in health. You probably never thought it would go to this extreme. Just know, if the tables were turned, I would be right where you are now. I love you unconditionally and you show me that love every day. My only hope is that you can see and feel it in return.


About the Author:  Brian LeBlanc was diagnosed with younger-onset Alzheimer’s in 2014 at age 54. He carries the APOE-e4 genotype, a genetic mutation which increases the risk of developing Alzheimer’s disease. His mother, father, and maternal grandfather have all died with symptoms of the disease. As a member of the Alzheimer’s Association 2015 National Early-Stage Advisory Group, Brian would like to raise awareness of the impact of younger-onset Alzheimer’s disease and be a positive example for other newly diagnosed individuals. His mantra is, “I have Alzheimer’s, but it doesn’t have me!”

Brian and Shannon live in Pensacola, FL. Together they have three children.



Oct 272015

Photo credit: Heather Weston

Two years ago, when B. got her diagnosis, I made the same assumption that almost all newcomers to this challenging subject do. I thought it was all about the loved one who now had Alzheimer’s. She was the patient — or maybe the word I used more often was “victim.”

She was, and she is. But the challenge, I came to see, was just as formidable for me as it was for her. I don’t mean to sound cavalier here. Any of us, given a choice between having Alzheimer’s and caring for someone who does, would choose the caregiver role. I know that. I don’t ever minimize what B. faces every day, and how that challenge grows. But being a caregiver is hard. It is definitely the hardest thing I’ve ever done in my life. Growing up in Bed-Stuy at the time I did, breaking out of what was one of New York’s toughest inner-city neighborhoods, finding jobs as a very black man in a white man’s world — that was easy compared to taking care of a wife with Alzheimer’s, day by day, hour by hour. Here are a few helpful suggestions I’ve learned through experience.

    • Read the literature. I know that sounds obvious, but the fact is that most caregivers read very little. For one thing, they’re occupied with caring for their loved one. I get it! But frankly, most feel they’ve done enough by just listening to what their doctor tells them. They really haven’t. There’s so much to learn in terms of diet, activity, ways of coping . . . I think you can get a lot of that from our book, but I’d urge you not to stop there. Knowledge helps. It helps your loved one, and it helps you, with specific suggestions on what to do and what not to do.
    • Learn as much as you can about the disease. Maybe this seems like extra homework, but I got fascinated by learning the science of what Alzheimer’s is. I found it oddly comforting to know what doctors have figured out so far—more so to learn what the paths are to a possible cure.
    • Get in touch with your local branch of the Alzheimer’s Association. There are many wonderful organizations out there, from those promoting research and drug trials to commonsense help for caregivers, and we list a number of them in our book. But the national Alzheimer’s Association is in a class by itself—a fount of information, with an unequaled network of local branches to offer all kinds of hands-on help.
    • In groups of three or more, don’t treat your loved one as if she doesn’t exist, and don’t refer to her in the third person. The most loving and well-intentioned caregiver can find himself icing his loved one out of the conversation—with her sitting right beside him. It’s understandable, especially if the disease has progressed to the point where the patient has lost all ability to follow the conversational thread. But even severely impaired patients tend to sense when they’re being excluded— I’d put that more in the spiritual than scientific realm—and to feel hurt and humiliated as a result.

Visit bsmith.com to learn more about the book Before I Forget.
  • Don’t try to finish a loved one’s sentences. Give her time to respond. If she can’t retrieve her thought after a long pause, gently prompt her with what you think she’s trying to say. When this started with B., I made the classic mistake of letting my frustrations get the better of me. B. would let a sentence trail off into space, and I’d jump in to finish it for her. As soon as I knew what she was trying to say, I’d go there first. I still get impatient—I’m only human—but I’ve gotten a lot better at letting B. take the time she needs. I try to be zen-like about it. I mean, after all, what’s the hurry?
  • Avoid being condescending or critical at all costs. It’s debilitating and simply doesn’t work. I tell you this from bitter experience. Before Alzheimer’s, B. and I never— ever—argued. Frankly, that wasn’t because we were both so level-headed. It was that B. was! I was the one with a temper; B. was just gracious enough to keep me calm. When her Alzheimer’s came on, B. was still calm—but I no longer was. I was mad—at fate, and yes, too often, mad at B. Slowly, I got over that and came to terms with the obvious. Alzheimer’s wasn’t B.’s fault, and my lashing out at her—when she forgot something I told her ten minutes before— was of no help or justification whatsoever. Here’s one thing that helped me: I started consciously keeping my conversation with B. to questions that could be answered “yes” or “no.” Instead of “What would you like to wear today?” I’d say “How about these black pants?” In the supermarket, same thing. Not “What shall we have for dinner tonight?” but rather “How about this salmon? With a little salad?” It made for a much happier B. She could participate in the decision and not feel left out—or, worse, hurt by a snappish remark from me.
  • Above all, never lose sight of the dignity within the human being who has the disease. This is so, so critical. Maybe it’s the most critical point of all. Patients get worse with Alzheimer’s—so far, that’s the unavoidable truth, without exception. As they do, they lose physical mobility along with their functioning minds. This is a terrible, terrible process for them—and for those who love and care for them. But even those with severe Alzheimer’s retain their humanity and remain, somewhere inside, the people we knew. We have to honor that, always, even to the last, both for their sakes and ours.

About the Author: Dan Gasby is husband and care partner to supermodel, restaurateur, magazine publisher, celebrity chef, and nationally known lifestyle maven B. Smith, who has younger-onset Alzheimer’s.

Dan has been a television media sales executive and a television producer for both network and syndicated programs. He helped publish and launch wife B’s eponymous magazine and helped cofound her lifestyle retail brand.



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 alz.org 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.


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Feb 212014

Volunteers – both with and without Alzheimer’s disease – are needed to participate in actively enrolling clinical trials about Alzheimer’s and related dementias. Recruiting and retaining trial participants is one of the greatest obstacles to developing the next generation of  treatments and possibly future cures for Alzheimer’s and other dementias.

TrialMatch® is a free matching service that connects individuals with Alzheimer’s and other dementias, caregivers, healthy volunteers and physicians with current clinical studies. With a database of 130+ Alzheimer’s clinical trials, including both pharmacological (drug) and non-pharmacological (non-drug) studies being conducted across the country, TrialMatch is a unique opportunity to make a difference in your life and the life of others with Alzheimer’s disease.

The Alzheimer’s Association spoke with TrialMatch user Wanda Young regarding the benefits of her participation in these clinical studies. Wanda is caregiver for her husband, mother and brother, all of which have forms of dementia.  She is participating in clinical trials as a healthy volunteer.

Wanda initially called the Alzheimer’s Association to receive information about brain donation and was told about TrialMatch. “I Cwas interested in the opportunity because I wanted to learn; I’m always trying to learn more. I’m actually taking a psychology course right now, studying the brain. My kids think I’m a bit of a geek, always trying to absorb the most I can about a subject… Education is the key to everything.”

“TrialMatch allowed me to plan my days as a caregiver better. It helped me take a look at myself and how I was coping, and how I could better care for my loved ones. TrialMatch prepared me for what to expect and how to respond as my family members progress with their various dementias. The TrialMatch experiences allow me to think further beyond today and into the future.”

Wanda says that she saw the TrialMatch process not only as an outlet, but as a helpful planning tool that allowed her to plan major life decisions. “My time at the computer is my time alone and my time away from everything else I am experiencing. Using the computer on my own schedule is an easy way to receive new information. The studies I participated in helped me write my advance directive and allowed me to look at my own life and health. I also received tips for managing the medications of my family members, as well as helpful information about daily toiletry, tactful ways to redirect, travel to doctor appointments and so many helpful resources for each of them (my husband, mother and now my brother.) These are not easy tasks. They take time to complete, and only someone in my situation knows what it is like.”

Whether you are a caregiver, someone with Alzheimer’s or other form of dementia, or even a loved one of a caregiver or person with dementia, you are needed for future research. “I wish more physicians knew about TrialMatch and could tell their patients and their families about it. I used to have my own business; needless to say, my life is very different from what it used to be. Caregiving takes a major hit on your self-esteem. As a caregiver, I have gained a lot of weight due to the stressors in my life.  Without a support group or outside help, you can begin to feel like a non-entity, like you don’t exist. Thankfully I have been able to join a support group and have participated in groups at the Alzheimer’s Association to help with these feelings.”

Wanda recognizes that the more that she learns, the more she can change her life and the lives of others. TrialMatch educates caregivers and offers researchers valuable information only caregivers and those with Alzheimer’s  and other dementias can provide. “I believe I have become an advocate,” Wanda says. “I read, I experience, I learn, and I take what I know back to the nursing home to help those in need. I share what I have learned with the staff, other caregivers, the residents and their family members. You don’t feel so far-removed from researchers when you are able to participate in a trial. I felt as though someone heard me, and that in itself is empowering. TrialMatch has been a way to de-stress. Being a caregiver is a full-time job. People don’t realize how difficult it is. It is important that caregivers have a voice.  I thank TrialMatch for giving me this platform.”

Ultimately, the goal is always the same. “The TrialMatch studies help caregivers cope with the difficult task of taking care of our loved ones. You feel less alone, and more educated. You feel like someone cares – and understands. Ultimately, the reason anyone should participate is to get us closer to a cure. The goal is always to find a cure.”


Wanda Young has been married to her husband Lou, a former teacher, mentor and coach for nearly 30 years. They have two wonderful sons. Wanda participated in the Medications Assistance study and the Relationship between Chronic Stressors and Eating Behaviors in Dementia Family Caregivers study through the Alzheimer’s Association’s TrialMatch® program. She is the primary caregiver for her husband, her mother and her brother.FOTFE12_A

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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.


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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