Spotlight: Rachael Bachleda

Rachael and her family

At 61, my mother, Mary Lou Thompson, was diagnosed with Early-Onset Alzheimer’s. I saw the warning signs for years, but my family dismissed my concerns. My mother had been an active stay at home mom, a voracious reader and an active volunteer. In 2003, while planning my wedding, I noticed that my mother’s demeanor was changing. She seemed confused and intimidated by organizational tasks she had thrived on for so many years. In 2004, I became increasingly concerned when she got lost driving on a familiar road, after which she became flustered and made excuses. There were countless other signs as well.

Although there was no cure for Alzheimer’s, I knew that we could not ignore the problem and had to seek a diagnosis quickly. In 2006, I contacted the NYC Chapter of the Alzheimer’s Association for help finding someone to make an accurate diagnosis. The Chapter was helpful and supportive, directing me to a great doctor and clinic. The social workers at the Chapter helped me strategize how to approach my family and stressed the importance of seeking medical attention. After some convincing, my family agreed. Together went to the Memory Disorders Clinic at Columbia University, where my mom was diagnosed.

Though the initial stages were heartbreaking, it has been most painful to watch my mom’s personality change, and watch her lose her identity. Today, she cannot read or write her name, converse in a group or follow a conversation very well. She forgets what she is talking about and cannot find even the simplest words to get her point across. She can no longer prepare even a simple meal for herself and has difficulty getting dressed. In short, my mom cannot do anything on her own, which makes her feel like a child.

One of the terrible things about Alzheimer’s is its impact on the patient’s primary caregiver. Watching my mom’s disease progress at such a young age has been hard on the family, but seeing the impact on my dad’s life is tough. He is a healthy and active 63 year old, he had retired just before her diagnosis in order to begin the exciting “Golden Years” ahead. He gave up that dream, instead shouldering the care-giving responsibilities as her primary care giver. He would not have it any other way, but this responsibility is increasingly taxing. He is with her almost 24 hours a day and it is a challenge for him to maintain a balanced lifestyle.

Recently, my sister stayed with my mom while my dad went away for a couple of days. When my dad returned, my mom got angry with him, accusing him of leaving her for weeks. He knows this is a result of the disease, but he feels guilty and helpless as we all do. My sister and I have always had a strong relationship with our dad, but it has grown more so as we support each other.

In the last three years, while my mom’s condition has deteriorated, our ability to deal with Alzheimer’s has improved. The reason for this is the support of the Chapter. We attend the educational meetings and meet with social workers who specialize in helping Early-Onset patients and their families. We learn strategies to cope with the changes around us, while gaining an understanding of what is physically happening to her brain.

I joined a support group for daughters of Alzheimer’s patients. Prior to joining, I did not know anyone with a parent suffering from Alzheimer’s. It was comforting to meet and spend time with people who understood what I was going through. As a group, we have helped each other through many milestones. I joined shortly after having my first child, and while this was a joyous occasion, the group offered support when my mother was unable to help me. I would not want to go through this experience without the help of the Chapter staff and services for which I am truly grateful.

Last year, I joined the chapter’s Junior Committee and the inaugural “Run2Remember” Marathon Team. Running in the marathon was, in a sense, like caring for an Alzheimer’s patient. Both require a deep level of commitment and discipline, and it is undoubtedly a long (often painful) process that you must plug away at day in, and day out. It was an honor to run my first marathon in the city that I love, on behalf of my mom, my dad, and the millions of others affected by Alzheimer’s, who must trudge through their own “marathon” every day. I am excited to be running the marathon again with the 2010 Chapter team.

Spotlight: Judy Schuchart

Judy Schuchart: After the 2009 ING NYC Marathon

As many of you know, last year I ran the New York City Marathon in order to raise funds for the research necessary to find a cure for Alzheimer’s disease. This was in honor of my Dad who was diagnosed with Alzheimer’s over 6 years ago.

On June 15, 2010, my Dad passed away, leaving an emptiness that is difficult to express. Although I had already signed up for this year’s marathon, honestly I was thinking of withdrawing my registration. I was working a lot of hours, traveling a lot, trying to plan a wedding, and just lots going on. The early morning training runs just seemed unbearable. Then, during the week of my Dad’s funeral, the reminders of my Dad working 3^rd shift, then coming home and working on the farm all day in order to make sure his 11 kids were well cared for, made my excuses of not wanting to get up early seem pretty lame.

So….in memory of my Dad, Lester Leese, and the love, motivation, and support that he always provided, I will once again be running in the New York City marathon this year, on November 7, 2010 in order to raise funds to cure Alzheimer’s disease. Through our fundraising, if we can prevent one more person, one more caregiver, or one more family member from having to endure the pain that this disease causes, it is worth every step of the 26.2 miles!

If you would like to contribute to the cause, please see the website at http://2010teamr2r.kintera.org/judy .

Spotlight: Trish Conron

Trish with her Dad

My father was the greatest person I have ever known. He was kind – I can never remember him saying a negative thing about anyone. He was funny – not in the most obvious way, but in the best way imaginable. He was incredibly intelligent – he graduated from Notre Dame with a degree in Electrical Engineering. He was the most loving husband anyone could ever ask for. He still called my mother his girlfriend and considered himself the luckiest man alive to have met her. But most important of all, he was the most incredible father I could possibly imagine having. Nothing mattered to him more than his family. He was never as happy as he was when we were together.

My father suffered from many health issues over the last 10 years. Due to poor genetics, he suffered from vascular disease and had to undergo more surgeries than I can count on my hands in a 4 year span. Somehow he managed to make it though them all…even his double bypass surgery. Many of these were considered “emergency” surgeries, and there were many hours when we sat in the waiting room begging God to get Daddy out of the ER and back to us in one piece. Somehow, he always did.

We knew we were blessed and lucky to still have him with us. Though he had become weaker as a result of the trauma his body went through, amazingly, he was still as sharp as ever. We marveled at the way that after everything, he was still the incredibly intelligent engineer we were so proud to call our Father.
Slowly, about a year and a half ago, that began to change.

It wasn’t so obvious at first. He would forget what he was saying mid-sentence, or get somewhere and realize he hadn’t brought something he needed. I know these are things that most of us do on a daily basis, but my father never forgot anything, which made it alarming to those of us who were closest to him.

The biggest sign was his sleep problems. At first, my mother was the only one who really ever witnessed them. For the last few years, he would wake up in the middle of the night and act out whatever it was he was dreaming about. At times, he would be terrified, and occasionally even aggressive.

Finally last summer I begged my mother to take him to a sleep doctor. That began a long process of testing which eventually led to a neurologist. We were terrified to hear the word Alzheimer’s, but at the same time, we were sure that was the answer. In late November of 2009, almost 6 months after testing began, we finally got our answer. At first were relieved to find out that we were wrong - Daddy didn’t have Alzheimer’s. We weren’t relieved for very long though, because what Daddy had was Lewy Body Dementia.

Though widely unknown, even to those in the medical profession, LBD is the second most common form of Dementia behind Alzheimer’s. Approximately 1.3 million Americans suffer from this horrendous disease. There is currently no cure. Most simply stated, my father suffered from symptoms of both Alzheimer’s and Parkinson’s disease while my family could do nothing but make him as comfortable as possible and pray. He hallucinated, lost his short term memory, had night horrors and acted them out(this is known as REM sleep disorder), didn’t realize his home was his home, and most devastating of all, didn’t know who my mother was. In addition, he walked with a shuffle, became extremely stiff, slept almost all day long, and fell frequently. It was one of these falls which finally resulted in us taking him to a nursing home, where he only stayed 7 days before being transferred to a hospice.

After 6 nights in hospice, my father died on June 9, 2010, less than 7 months after being diagnosed with LBD.

One of the hardest parts about my father’s illness was knowing that I was completely powerless to do anything about it. I am not a doctor or a scientist, and unfortunately, in this lifetime, I will not ever be able to discover a cure for these horrific diseases. I refuse to settle for just doing nothing though, so the least that I can do is support those who can.

I am honored to be a part of team Run to Remember this year. My father knew that I was going to be running for Alzheimer’s, and I know he was both proud of me and grateful that there are people out there who are working toward something that meant so much to him. While he knew that it was too late for a cure to help him, he prayed that one would be developed one day so that others wouldn’t have to suffer the way that he did.