May 072015
 

The purpose of life is a life of purpose. ~Attributed to both Ludwig Wittgenstein and Robert Byrne

I was a nurse for thirty years. Near the end of my career, I began to notice that I was struggling to complete daily tasks. There was always an excuse; I was tired or had worked too many hours. I began having trouble with my knee and took time off work to have surgery. It was during this time that I started to take note of my problems.

I had days that I called “lights on” or “lights off.” When the lights were off I didn’t know when or what I ate, I had no idea if I slept or how long I had slept. Verbal and written information was hard for me to understand, and I got lost in familiar places. If I only lost my keys on any given day that was a good day.

cynthiaGWhen the lights were “on” I had to clean the mess I had made while the lights were “off.” Once, I went to wash clothes and there were no dirty clothes. I had been wearing dirty clothes for days, unaware of how long this had been going on.

In 2011, I found myself at a stop sign and I didn’t know where I was or how I got there. In that moment I decided to make an appointment to see my doctor. I had an eight-year relationship with my primary care physician and felt she knew me really well. During my office visit, I cried while talking with the nurse, and my physician agreed that the changes I was experiencing were not like me.

dinner

My doctor referred me to a neurologist and on my sixty-third birthday, with my son at my side, I underwent testing and was diagnosed with Alzheimer’s disease. My son asked questions, but I didn’t. I was happy to know there was a word for my problem, and although I know how this disease will end, every day I wake up and accept who I am that day.

pam

In May 2012, at the urging of my son and son-in-law, I moved into a residential community they both felt would be a good fit for me. I would be close to my family, my care team, and the specialists who conduct the clinical trial in which I am a participant. Yet, the most important part of my care team is my supportive children, and I was grateful to be closer to my son.

Shortly after moving, he spent Mother’s Day with me and afterward he wrote me a letter. I cherish this part:

Mom, I don’t want you to worry or be afraid. Let’s enjoy every single day and not think too much about whether you can remember as well as you could in the past. I will watch over you and won’t let anything bad happen to you. If the time comes when we need to do more for you, I will make sure you have everything you need to have a great quality of life. I wish I could change things. I wish I could take your illness for you and I can’t. All I can do is be there for you and love you.

Yes, I have a loving and supportive family. I am a very positive person and if something starts to bother me I ask myself, “Does this really matter?”


Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias is now available for purchase, with all royalties going to the Alzheimer’s Association. Read all the inspiring stories.

I accept my disease and am proud to be a National Early-Stage Advisor for the Alzheimer’s Association. I have made it my goal to inform the public that I live a great life with support from my family. I am very active, and I want to work to change the stigma associated with the word Alzheimer’s. I have met so many wonderful professionals who have allowed me to share my story in an effort to educate others who are dealing with the effects of this disease. With the support of the Alzheimer’s Association, I have advocated for the needs and rights of others with the disease.

I may be just one voice, but together with other advocates, we are unified.

To put an end to this fatal disease, we need to advocate for more research and clinical study participants. As a participant myself, I know I may not benefit from the studies, but someone else will—and thinking about that makes me smile.

As a legacy to my family, I want to be a part of a movement that educates others and helps advocate for people with Alzheimer’s and their families. As this disease progresses, I won’t remember anyone, but I want to live my life so that people will remember me.

 Author: Cynthia A. Guzman

 

From the book Chicken Soup for the Soul: Living With Alzheimer’s & Other Dementias by Amy Newmark and Angela Timashenka Geiger. Copyright 2014 by Chicken Soup for the Soul Publishing, LLC. Published by Chicken Soup for the Soul Publishing, LLC. Chicken Soup for the Soul is a registered trademark of Chicken Soup for the Soul Publishing, LLC. Reprinted by permission. All rights reserved.

Learn More:

  11 Responses to “Remember Me, An Excerpt from Chicken Soup for the Soul: Living With Alzheimer’s & Other Dementias”

  1. I,too, have been diagnosed with Alzheimers. I wasn't surprised because my Mom had it. I am also a retired Speech-Language Pathologist and knew what is happening very soon. My family has been very supportive and I'm so fortunate. The best medicine is the care and concern of family and friends.
    AAD

    • I have been taking care of my mom for the last 8 1/2 years, she was 69 y. when she was diagnosed with dementia (my grandfather had alz. so it is in my family), and I believe she was not well long before that diagnosis. No one would step up to help her, not even my brother. But I saw what was happening, and I too knew what was coming. I never tell anyone that being the caregiver of someone is easy, it is not. And I have lost everything. But my mom worked so hard her whole life, so that I can be educated enough and strong enough to take on everything I have needed to do for her. No matter what I have lost or suffered, it is always the right thing to do.

      • My mother has Alzheimer's my dad takes care of her at their home, I am so grateful to him for all he does I know there is so much that goes unnoticed but be assured that you are taking your responsibility seriously and that our creator see, I admire your love and dedication for your mother, keep up the good work

        • Even tho your Daddy looks after your MOM………… you need to take the responsibility of totally looking after your Mom for him to get some rest for a day or two once a week or have ever ………….. My mom had Alzheimer's
          for 7 1/2 years.. Daddy looked after mom as long as he could but after couple of years she came to live with me full time…..I always went to see my parents when Daddy was looking after mom and a lot of weekends I would bring mom to spent the weekend me for Daddy to get a rest and do things that he needed to do… Caregiver is the hardest job in the world but it is worth it for your love one…

  2. Gracias por darme esta oportunidad, les comento que mi amada Esposa Delfina falleciò el 24 de enero 2015, en el mes de diciembre 2014 como uds. me dijeron…se le hizo el exàmen cerebral que diò positivo a Alzheimer, sufrimos mucho al no saber que eso esa, pero descansò con la ultima oraciòn de nuestra religiòn catòlica y se fue en paz, hoy estamos muy tristes por su partida pero hicimos todo lo posible en su cuido y ella nos respondiò sus ùltimos dias de vida con mucho amor y resignaciòn….Dios los bendiga hoy y siempre…desde Guatemala C.A. Luis Gonz+alez Soto…….

  3. Wow. that son is a keeper.

    And here is a woman who shows us by her actions that moving into an Assisted Living Facility early on, is an excellent idea.

    And congrats to her on participating in clinical trials.

    Wish I could meet her!

  4. An inspiring account of this gracious lady's life living with this terrible disease. I wish the best for her an the millions of others and their caretakers, family, and friends. For quite a few years I was my dear husband's caregiver when Alzheimer's made it so difficult for him to manage his days and nights without my assistance. My Bob was a wonderful man, friendly and caring. Until a massive stroke led to his death, Bob tried so hard just to do some things. I left my job and decided to stay with Bob at home. Good decision due to his frightening habit of wanting to 'go for a walk'. Long story about that and fortunately a better ending. I just wish that in rural areas such as the one we moved to from St. Louis, would be able to provide some assistance to the caregiver and the one with Alzheimer's.

    I worked for about a year after Bob passed away in the Alzheimer's/dementia unit of a local nursing home. Very rewarding to be with and help 'my' residents. And talking with their family and friends at times. I say rewarding because just about every little thing we did together brought a good reaction and smiles all around most of the time. Just had to remind a few people that it wasn't their fault that they may be acting so differently than before now. They did not choose to be this way. It, Alzheimer's happened to them. Hope and pray for research to lead to a cure with positive results, meaning return the patient to a meaningful and happier life. And bless you, Cynthia A. Guzman. Thank you for sharing so much. Also, thanks to your caring son as well as the others in your life.

  5. This is a very inspiring story to those both suffering with Alzheimer/demenia and those loving supportive caregivers. My Mother was diagnosed with Alzheimer and passed away at the age of 76. I know it is not an easy task caring for someone with Alzheimer, especially when this disease attacks someone that you love so much. You definitely need a supportive family and Cynthia A. Guzman have that family. God bless you and all those that suffers from this terrible disease.

  6. Great story Cynthia….so glad I can say you are my friend!
    We both share a lot with this disease, and all though we are opposite ends of the country we seem to be able to talk and laugh a lot about what we are going through……it helps to not be in this alone. One of my blessings is having met you and have you as a friend…..(((((Hugs)))))

  7. I lost my dad a year and a half to this disease, my mother was his primary caregiver – we had no idea – what she went through in caring for him. We had no idea until close to the end. My parents are old school and did not believe in sharing the problems of adults with their children. My parents have always been protective and wanted us to have lives free from worry and care. This attitude has carried over to our adult lives. We are now, 7 adults over the age of 50. I am the youngest. To even write this is difficult. We are now watching our mother go through this disease and we only found out her status when we tried to get her a computer. We now understand her resistance to a computer – she can not even boot it with graphics 🙁 Many in my family have Faith in the Lord Jesus Christ.

  8. Thanks Cynthia. Your entry is in this month’s “Perspectives” newsletter https://paper.li/f-1408973778

 Leave a Reply

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>

(required)

(required)

Alz.org main site  |  Research  |  Advocacy  |  Care and support  |  Message boards  |  Disclaimer  |  Donate  |  Contact us  |  Sign up for e-news
© 2011 Alzheimer's Association | Blog Suffusion theme by Sayontan Sinha