My mother, Mary Lou Thompson, was diagnosed with Alzheimer’s disease two years ago at the age of 61. I had seen signs for at least four years prior to her diagnosis and at first my family dismissed my concerns and told me not to worry. After awhile my mother was also noticing these alarming symptoms and she became terrified by what they might mean. You never want to think of your own parents as being scared, but she was; it was a painful to see it.
Although there is currently no cure for Alzheimer’s, I knew that ignoring the problem would not make it go away and that if there were clinical trials available, then we had to get her involved with them as soon as possible. In 2007, we all went to the Memory Disorders Clinic at
It has been most painful to watch my mom’s personality change. My mom was a voracious reader, finishing several books a week alongside her daily newspaper dose. She loved to spend time talking about current events with her many friends. Today, she has trouble reading and conversing in a group setting. She is loosing touch with her friends because she is embarrassed by the diagnosis.
In the last two years, while her condition has continued to deteriorate, our ability to deal with Alzheimer’s as a family has greatly improved. One of the reasons for this is the New York City Chapter of the Alzheimer’s Association. My sister and I have attended the educational meetings and met with the social workers that specialize in helping early onset patients and their families. We learned strategies to cope with the changes while gaining a better understanding of what is physically happening to her brain. I also joined a wonderful support group for daughters of Alzheimer’s patients. It is nice to be able to meet and spend time with people who understand exactly what I am going through.
One of the many terrible things about Alzheimer’s is its impact on the caregiver. Watching my mom’s disease progress at such a young age has been hard on the entire family but seeing the impact on my dad’s life is especially challenging. My dad, a very healthy and active 62 year old, had recently retired in order for them to begin the exciting “Golden Years” that lay in front of them. Instead, he spends these times as the main caregiver, watching after various responsibilities for my mom. She needs help with many daily activities. I know that he would not have it any other way. I hope that when it comes time for me to take care of my husband in our golden years I can do as good of a job as my dad does for my mom. I am running in honor of both of them.
Running has helped me get through the last several years. I feel that the constant, rhythmic motion of my feet hitting the pavement helps to clear my mind, relieve my emotions, focus my thoughts and motivate me to continue being the most supportive and helpful daughter that I can be . I feel that caring for an Alzheimer’s patient is very similar to running a marathon in that it requires a deep level of commitment and discipline, it will be very painful at times and it is a long process that you plug away at both day in, and day out. I am honored to be running my first marathon in the city I love on behalf of my mom and dad and the millions of patients and caregivers who run their own Alzheimer’s
I'm running on Team Run 2 Remember in honor of my grandmother, in memory of my great aunt, and for the millions of people affected by this disease and their caregivers. I joined the Alzheimer's Association Junior Committee in March 2008. In June 2009, I became the Community Service Chair for the committee, which means I coordinate volunteer trips to visit Alzheimer's patients in
My grandmother used to be a caterer for the Beth Judah congregation in
My grandfather is her caregiver. They're high school sweethearts, married since 1942, right before my grandfather went to fight in World War II. He takes her camping in their motor home, traveling from
Running the NYC marathon has always been in the back of my mind as a goal I would one day achieve. I assumed I would do it one day, but every year seemed to not be the right year to run the
This past spring I went for a jog where I live in
My grandmother passed away in 2004 after suffering from Alzheimer’s disease for about 6 years. It was really hard for my entire family to watch her become so confused and scared. Her face would no longer light up when you visited, but rather give you a blank stare. As with any terminal illness, my family felt helpless and hopeless in watching my grandmother slowly deteriorate. I’m honored to run the marathon on team Run2Remember because they are giving families hope that Alzheimer’s disease will one day be cured.
With this as my mantra, and as a member of the Alzheimer’s Association’s Team Run To Remember, I have committed to run the 2009 ING New York City Marathon on November 1st. I am running in honor of my mom, Manche, who is battling this heart-rending disease.
For those who have not had the privilege of personally knowing my Mom over the years, I proudly share with you the fact that those, whose lives have been touched by her, consider her to be a woman of gentle spirit, with a gracious smile for everyone. Today, my father, myself, family and friends, sit helplessly by watching this ruthless thief, called the Alzheimer’s disease, slowly and mercilessly steal her away from us. For my Dad, life has become a round-the-clock vigil; an act of stoic devotion to his wife of more than 50 years, ensuring that my Mom retains a sense of dignity, happiness and peace.
Running 26.2 miles is certainly a great accomplishment, but it pales in comparison to enduring this painful journey that many have called “the long goodbye”.
I remain overwhelmed and touched by the ongoing support I’m receiving from friends and loved ones. It is amazing to me how many people in my life have also been affected by this horrific disease. I am so thrilled to be a part of New York City Run To Remember Marathon Team. I take great pride and comfort through our collaborative efforts, we will raise not only funds, but awareness to one day eradicate Alzheimer’s.
Each week we will be picking three (3) members to spotlight to tell their alzheimer's story and why they are running in this year's New York City marathon. Check in each day or week for new updates on who will be spotlighted and get to know your teammates...(each person is picked at random)
SPOTLIGHT: Lucia Domville
I ran NYC marathon back in 2000 and found it to be one of the most rewarding experiences in my life. To be a true New Yorker, you need to be a runner and to really get to know New York and New Yorkers you need to be able to run a marathon, see the streets, the people, the fun, the care and the support. When I finished after all months of training, commitment and soared muscles, I said to myself that I would want to do another marathon some other time in my life. After a child and aging, I revisited the idea and applied for the NYC lottery twice but got rejected… In talking one day about marathon with my boss, Anne McBride, she told me story of how she and Lou Ellen had discussed getting marathon spots to run for the Alzheimer NYC Chapter Association.
Before I knew it, the Alzheimer’s Association NYC Chapter had landed 50 marathon spots and I was already involved to help the organization raise its visibility by hosting an opening bell at the NYSE. As a financial communications consultant, I had close relationships with the Exchange and was able to secure the opening bell on June 8th. That day we hosted a nice breakfast at the Board room and met many of the board members of the Alzheimer Association; it was a very exciting day for all and a good opportunity to be seen around the world. Next step was to commit myself to running again and I applied to NYC marathon.
Every day I get up, even when I don’t feel like it, either because I’m too tire or soared or rather be having a nice breakfast with the family, I remind myself, I am running to make a difference, even if it is just a small difference. Running has always given me the possibility of thinking, or coming up with new ideas for projects or solutions to problems. In the many days I have been running to train for this marathon, I have also asked myself why am I running, not only the marathon, but my connection to the Alzheimer Association, other than Anne McBride. Only a couple of days ago I was able to come up with an answer… in my family we also carry a different source of medical hardship. When we were growing up, we had an accident and my 14-year old sister was in comma for months and hospitalized for over a year. Her recovery was very slow, she, at 15, began being a baby and had to learn everything all over again, years went by and progress slowed down; the brain damage was so severe she has never been able to see or walk, it has been only her memory and the ability of having thoughts and ideas what has kept her going and alive all these 21 years, and hopefully all the support of the family. The family, the support, the love does make a difference, we all suffer and we learn. I am also running for her memory.
