Tuesday, 11 October 2011

Read A Speech By Lindsey Jordan At An Alzheimer's Leadership Retreat

Dear All,

The National Caregivers Group would like to share with our caregivers and members a heart- warming speech given by Lindsey Jordan, a young student / performer / activist, whose father is in the final stages of Alzheimer's at an Alzheimer’s Leadership Retreat.

REMEMBER, Caregivers share things that no one else thought to tell. Her story offers hope to caregivers and their loved ones afflicted with the disease, and anyone who must deal with Alzheimer’s / Dementias that we are here to help and support each other through good times and bad times.


Read A Speech Given By Lindsey Jordan Recently At An Alzheimer's Leadership Retreat

Good evening everyone! My name is Lindsey Jordan and I am very honored to be speaking to you tonight.

You may be thinking to yourself, what does this thirteen-year-old know about advocacy and care giving and why has she been chosen to speak here tonight? Well, I am not a stranger to either. But first, I would like you to get to know me and so I'm going to tell you a little bit about myself.

As a young teenager, I am also a straight "A" student and I have a regular job performing as "Addy" and "Josefina" in the Los Angeles original cast of the American Girl Revue at the LA Grove. I have been blessed as a working actor and singer since I was four years old so I also have ongoing auditions, acting and singing jobs, and take dance and singing classes.

At a very young age, my Mom and Dad introduced me to volunteerism. I began volunteering and performing at various charity events. Soon, I discovered that I could bring a smile, if only for a few minutes, to strangers searching for hope.

I believe my advocacy work began when I was about six years old. I joined an organization called "Kids with A Cause", a charity group made up of entertainment children. I saw first-hand the sadness that comes with children who are sick, homeless, abandoned, abused, and or poor. I learned the importance of bringing hope and happiness to others and every moment feeling VERY fortunate.

At age eight, I was determined to make a difference in our community while being a good role model to others so I started my own annual charity event, "The Winter Warmth Program". To date, I have collected over 120,000 winter warm items that have helped warm our local less fortunate through agencies such as The Mental Health Association, The Domestic Violence Shelter, The Salvation Army, Migrant Farm Workers, The Children Center of the Antelope Valley, The Antelope Valley Boys and Girls Club, The Valley Child Guidance Clinic, Homeless Solutions, Lancaster Community Shelter, Grace Resources, Wilsona Healthy Start, M.E.N.F.O.L.K, SAVES, Penny Lane, and several church organizations.

Over the years, I have sung, raised money, cooked lots of pancakes, served at soup kitchens, entertained Veterans, adopted families for the holidays, sat and visited with many hospitalized children, visited with seniors, walked many miles for various causes, and have participated in many toy drives BUT, none of this prepared me for the long journey I would soon be taking with Alzheimer's.

Through my volunteerism, I have seen so much goodness and so much sadness. Volunteerism has taught me compassion and the true understanding of kindness and acceptance, and the power of hope. From an early age, I learned that ordinary people can do great things....

So now, you know a little bit about me. I AM Lindsey Jordan, age 13, a straight A student, performer, activist, and young community leader.

BUT, more importantly, tonight, I stand before you as a devoted daughter, an Alzheimer's advocate and proud "Caregiver". You see, sadly, MY FATHER is now in the final stages of Alzheimer's. My father, Charles Jordan, was formally diagnosed with the Alzheimer's disease in 2002 when I was just 8 years old - he was only 51 years old.

My Dad worked in the medical field for 30+ years. He has worked at several LA hospitals and taught X-Ray to students at various colleges and vocational schools. My Dad unselfishly worked 2 jobs so that my mom could stay home care for my brothers and me and drive me around to all my auditions and jobs.

As my mother and I reflect back to those early years prior to diagnosis, we were very uneducated about Alzheimer's. In the beginning, we were very much in denial that something was seriously wrong with my Dad. We live in Palmdale and sometimes my Dad would take 2-3 hours to get us home. We thought he just loved to drive and was taking the scenic route but in reality he couldn't easily remember how to get home.

Since my Dad worked in Los Angeles, he would leave the house about 5 in the morning but there were many times he wouldn't get to work until after 10 a.m. He would just tell us he had some errands he had to run. Because he was such a responsible husband and father, we never gave it a second thought.

A couple years later, my Dad's boss told my mom something was seriously wrong. My Dad who had worked in the same field for over 30 years was confused and couldn't perform his job. That was the reality check. It was then, that my mom thought he had a brain tumor or maybe he had a stroke or something. We took him to our family doctor who suspected something was wrong and referred him to a neurologist.

At first, the neurologist did some standard testing, and then told my mom he suspected Alzheimer's. Well, we didn't believe that diagnosis since my Dad was only in his late 40's. After many more tests, and many more neurologists, we finally accepted the fact that he had Alzheimer's.

Now, my mom and I were determined to learn everything about this unforgiving disease. Educating ourselves about Alzheimer's was the turning point in our emotional battle with Alzheimer's. We continually researched and read about Alzheimer's.

Immediately, my mom signed my Dad up for the clinical trial studies at UCLA. It is here that we were introduced to the Alzheimer's Association and to people who really understood what we were going through. Although, we had the initial support of our family and friends, many of them struggled and still do struggle with my Dad having Alzheimer's. Many years later, they are still in denial, won't accept, and still don't understand how it is possible for my Dad to have Alzheimer's.

As you know, caregiving is a 24 hour a day job and the Alzheimer's disease doesn't care how young or old are. My brothers are now married so caring for my Dad was a full time exhausting job for my mom...and me. Every morning before school, I would help my Mom get my Dad into the shower. Sometimes, when she was showering him, I would make his breakfast. We would get him dressed and there were many times that as we were getting ready, he would get undressed and we would have to start over again. At times, my Dad would help us fold and put the laundry away. Unfortunately, he would get the laundry from the washing machine and the clothes in the drawers would still be wet. One time we went out to eat and he went to the bathroom and got undressed.

All the simple things we take for granted became much more difficult - Getting him in the car, putting his seat belt on, opening doors, going to the bathroom, and now even walking and eating.

In the beginning, my Mom didn't take care of herself and rarely slept. She also took on a part time job. Between work and housework, my work and school, and taking care of my Dad, my Mom ended up becoming very ill. It was a nightmare because she couldn't help care for my Dad. Eventually, my Grandma had to come and stay with us until my Mom got better. We learned the importance of resting and staying healthy.

We were able to get my Dad into an adult day care. Unfortunately, it was only 6 months before he hit another patient. We took him to our local doctor who wouldn't believe he had Alzheimer's and refused to give him any medication for his violent behavior. The doctor told us he didn't know anyone that young who had Alzheimer's and even asked us who gave us this diagnosis. It was very frustrating.

Soon, my Dad started having hallucinations and was becoming more irritable and aggressive. I remember that every morning, he thought he saw Governor Schwarzenegger parking his car in front of our house and begin dumping all his things in our front yard. My Dad would get so angry and say, "Doesn't he have anything better to do?"

Eventually, my Dad had to be admitted to the hospital and in September, my Mom had to make the painful decision of transferring my Dad to a nursing home where he can receive the specialized care he needs. The doctors say that he will never return home to us.

Although I try to be strong for my mom, it has been extremely stressful and absolutely devastating to watch what this disease has done to my Dad...and my family. He cannot care for himself and he rarely recognizes us. I, along with our friends and family, have watched my mom struggle, shed tears of frustration and pain because she is worried about me, my Dad, and our future.

My biggest sadness comes from knowing that this disease has already taken my dad from me. Alzheimer's has stolen my Dad's mind and will forever rob us of sharing our life's adventures. Although I know he will always be with me in my heart, the reality is that my dad will never see me reach those special milestones in my life. He won't see me graduate from high school or college. He will not be by my side walking me down the aisle when I get married. And, he will not be able to hold and play with my children. I will never get to see the pride on my dad's face as I strive to realize my dreams.

Losing my dad to this disease has been devastating to my mom, our entire family, and me. However, we have been blessed with the unwavering support of our friends and family. More importantly, I am here to share information with our community about Alzheimer's awareness and the world's struggle to understand and cure Alzheimer's.

Although there is no hope for my Dad, there is still hope for others. I have always been an advocate for our various charities but since my father was diagnosed Alzheimer's, I have made learning about this disease, and sharing my story with others my priority. My promise to you is that I will continue to be an advocate for Alzheimer's sufferers. I have had the opportunity to share my story in the Alzheimer's Association's Awareness Video, Newsweek Magazine, and I have traveled to Sacramento to lobby State and local community leaders for funding which is so critical to the on-going search for a cure. I plan on returning to Sacramento in the near future to once again share my story of our family's struggle with this deadly disease and to ask for their continued support in our fight for a cure.

From the bottom of my heart, and on behalf of my dad and my family, I thank you again for taking the time to hear my story and I thank you in advance for your support.

With sincere appreciation,
Lindsey Jordan

(Source: www.patmoffett.com/lindsey.cfm)

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