March 15, 2017 - Haley Richman

Kid Caregivers

My grandmother was diagnosed with Alzheimer’s disease when I was 4 years old. (I am now 9 years old). I wanted to help care for her, so my mom gave me easy puzzles to solve with my Grandma. I felt like I was doing a good thing because when we worked on puzzles we were both very happy. As the years went by, I learned about different ways of helping my grandmother. For example, “Go into her world.” My grandfather passed away, but Grandma asked me, “When will Grandpa come home from work?” If I told her the truth she
March 07, 2017 - Jason Resendez

Out at Sea: Two Stories of Dementia and Caregiving

There are over 15 million family caregivers providing care for a loved one living with Alzheimer’s disease or another form of dementia yet these stories are rarely found in the media, particularly the experiences of the black and brown folks that often struggle to access a diagnosis, treatment and care support. (Continue reading on Huffington Post) Jason Resendez is the Executive Director of the LatinosAgainstAlzheimer’s Network & Coalition - a network of UsAgainstAlzheimer’s.
February 28, 2017 - Jill Lesser and Stephanie Monroe

Heart Health, Black History Month and Brain Health: An Unlikely Connection

Two major advocacy campaigns are underway in February: Black History Month and Heart Health Month. While their connection to Alzheimer’s disease may not be obvious, each is vitally important. ( Continue reading in Morning Consult.) Jill Lesser is president of WomenAgainstAlzheimer’s and has been a caregiver for the past nine years to her mother, Barbara Lesser, who has Alzheimer’s disease. Stephanie Monroe is executive director of AfricanAmericansAgainstAlzheimer’s, the first national network created specifically to respond to Alzheimer’s disease and its disparate impact on African Americans.

I Miss My Sister

My older (by one year) sister, Lucyann, now 60, was diagnosed when she was 58.  She was a well-liked (by peers and students) professor, a great daughter and the best sister anyone could have.  She cared for my dad during the last 10 years of his life, while she was still teaching and/or working at the university, until his death about four years ago.  During the last three years, we started to notice that she was angry a lot, particularly with my mom, for whom she had absolutely no patience.  She would not go to work and claimed headaches and/or migraines. She took a lot of naps and always went to bed early.  She would spend a lot of time watching TV, the same happy-ending movies or tv shows, over and over.  She was a great baker, but her cakes were definitely not the same.  When she stopped paying her bills, we realized something was very wrong and we convinced her to see a psychologist. To make a long story short, the psychologist ordered a lot of tests and referred her to a neurologist, and there it was: frontotemporal dementia (FTD).  She retired from work and applied for Social Security Disability, which was granted about nine months later. She cannot live with my mother, and my mother cannot live alone, so we had to separate them. My mom lives with my brother because she cannot live by herself anymore. Social Security is not enough to cover my mom’s bills, so we are selling her house to pay for her care. Lucy has reached the stage in which she cannot be alone either, so she spends time in Puerto Rico, Tennessee, and Massachusetts, where some of my siblings and I care for her. We are still figuring her out. Her diet has changed—sweets, soda, pizza, and hot dogs have become her favorite foods—so she has gained weight, and we had to upgrade her wardrobe. We never know when she will agree to exercise (mainly walk), but she will always agree to go shopping or to the movies. She has lost empathy and there are absolutely no filters, especially between brain and mouth. There is no secret she is able to keep. 

I miss her phone calls, advice, hugs . . . I miss talking to her. I can’t figure out what she is thinking when she is staring into space, and I think that she is actually unable to tell me. I hope she is somewhat happy. I hope she feels safe and cared for.  I hope she feels how much we love her.

February 13, 2017 - Marie Marley

Do You Want to Be Right or Have Peace?

One night I was helping Ed, my Romanian life partner of 30 years, pay his bills. He’d been showing signs of dementia and always needed assistance with that task. Unfortunately, I put the stamp on an envelope a little askew. When Ed noticed, he lost it. “Marie,” he hollered, putting his glass of vodka down forcefully and slamming his fist on the table. “Look what you did. It’s crooked. You r-r-ruined a perfectly good stamp!” “Ed,” I said loudly, caught off guard and angered by his outburst, “It doesn’t matter. The post office doesn’t care if it’s on straight. They
February 06, 2017 - Jill Lesser

Driving Progress in 2017

In the United States, a change of administration always brings uncertainty. With new leaders entering Congress and the White House, we at WomenAgainstAlzheimer's (WA2) know we can turn that uncertainty into opportunity. Opportunity because we know finding a cure for Alzheimer’s and alleviating its burden on families can bring us together. WA2 is committed to continuing to lead a campaign to promote women’s brain health and fight against Alzheimer’s. 2017 is a critical year in our battle to stop Alzheimer’s in its tracks by 2020. We are confident in the progress we will make because we know that our passionate
January 27, 2017 - Michael Ellenbogen

Mixed Feelings

As a person who is living with Alzheimer’s, I have very mixed feelings about how I should talk about it. I have become an outspoken advocate in the dementia arena, but I feel like I am always at odds with so many. And it is sometimes hard for me to decide what my message should be. Should it be about living life to the fullest or all doom and gloom about the horrible disease? When I started my work as an advocate, I realized early on that if I painted too positive a picture of Alzheimer’s I would not get
January 10, 2017 - Karen Garner

Thankful

Last year, my husband, Jim, lost his 7-year battle with early-onset Alzheimer’s disease. He was just 53 years old. It hurt to spend the holidays without him. But as I reflect on the most difficult year of my life, I’m filled with gratitude for all those who find the strength to keep fighting this devastating disease. I am thankful for those fighting so hard for critical research funding, including UsAgainstAlzheimer’s, and for researchers who are in the trenches trying to find a cure. It must get frustrating going to work each day when for every step forward it seems there
December 19, 2016 - Ann Napoletan

Alzheimer’s & Dementia Gift Ideas

When my mother was alive, every year as the holidays approached I found myself struggling to come up with gift ideas for her. She was living with Alzheimer’s, and I wanted to get something useful that she would enjoy. Not something that would end up in a drawer or closet never to be seen again. However, as her dementia progressed, the options dwindled, requiring more and more creativity. The good news is that in recent years, there’s been an increase in items designed specifically with dementia-related needs in mind. In fact, a simple search on Amazon yields many great products
December 13, 2016 - Trish Vradenburg

It Is Getting Harder and Harder to be an Optimist

The recent announcement by Eli Lilly that a new drug intended to slow memory loss in people with Alzheimer’s had failed a late-stage clinical trial felt like a punch in the gut. Look, I know that finding a treatment for dementia is a complex, Herculean task. But I was so sure that this time it was going to happen. And when it didn’t, I knew the devastation that the thousands of people who volunteered for this clinical trial must have felt, as well as the dedicated Eli Lilly researchers and all those who’d devoted their time and energy to crushing
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