Sep 242013
 
single flower walk

The first change I noticed in my dad was his inability to write out checks.  I stopped by his office one day, and he was sitting at his desk with the checkbook open.  Several balled-up checks were scattered on his desk. He was slow to speak, but finally admitted that he could not write out the check correctly. On one check, he had transposed the numbers for the amount to be paid.  On another check, he had attempted to write his name on the “payee” line, but the scrawl did not look like his signature.  He was so frustrated, confused and scared. This was so unlike him—a man who had always been so confident, organized and in control. This was just the beginning of many changes in his personality and behavior.

My dad had Alzheimer’s, a progressive disease that robs the mind. It also breaks the hearts of family members who helplessly watch as their loved one slips away.

Fred Is Not ForgottenAs time went on, my dad, who had always been an impeccable dresser, no longer seemed to care about his appearance. He would mix prints with plaids, and chose to wear the same red sweater every day, even though he had a closet full of clothes. Eventually, he had to go into a 24-hour nursing facility, as he would wander at all times of night and became combative.

It was devastating for family and friends when we realized that he had slipped into his own little, confused world and did not recognize any of us. At times he mistook me for his sister or his wife.  Later, he ignored everyone but my brother, and their discussions were limited to talking about the family business. Eventually, all of his visitors were greeted by a blank stare.  As his journey came to an end, his muscles became rigid.  He could no longer sit up or walk.  He died in a fetal position, three years after the initial diagnosis.

His bout with the disease was relatively short in comparison to that of many victims, but his condition, decline and death have had a lasting effect on me. Twenty-five years later, every time I forget a word needed to complete a sentence or forget where I put something, I fear I may have the same fate.  Since his death, more attention has been given to Alzheimer’s; however, more attention is needed. It is now the sixth leading cause of death and the only cause of death among the top 10 in the United States that cannot be prevented, cured or even slowed.

On October 13, 2013, I will Walk to End Alzheimer’s at Tower City Center in Cleveland, Ohio.

I will walk in memory of my dad, Fred Grair, Sr., and other family members who have been affected by Alzheimer’s.

walk to end crowd

I will walk to allay my fear of contracting the disease.

I will walk on behalf of the more than 5 million Americans who are living with Alzheimer’s.

I will walk to raise money for Alzheimer’s awareness, support, care and research.

I will walk for you.

Today, more than half of all Americans know someone with Alzheimer’s.  If you have not been impacted in some one by this terrible disease, consider yourself fortunate.  Soon, no one will be untouched.  Please walk with me to end Alzheimer’s.

About the blog author:  Stephanie Grair Ashford is steering committee member and team captain for the 2013 Walk to End Alzheimer’s in Downtown Cleveland, Ohio.  You can donate to her team, Fred’s Not Forgotten.

This column originally appeared in the Sun News.

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  29 Responses to “There Are Many Reasons I Walk to End Alzheimer’s”

  1. Stephanie, Thank you for your story regarding Alzheimer's in your family. I live in Reno Nevada these days but my family members all come from Ohio. I will be participating in the Reno Nevada Chapter's event and walk.

    I was diagnosed with ALZ 4 years ago. As a scientest myself, I am very intested in anything we can do to stop this disease.

    Best regards to you and your family.

    Dr. James P. Hawke, Ph.D.

    • Dr. Hawke,

      I am so sorry to read that you have Alzheimer's disease. People who work in the healthcare field, know first hand how difficult it is for the patient and family members, when a person gets diagnosed with Alzheimer's disease. It is frustrating to see the patient just get worse, and worse as each month passes. I feel such dread, when I hear another person has the diagnoses of Alzheimer's disease. This dreadful feeling is because, no cure exists at this time, for Alzheimer's disease. My heart goes out to all people who are surrounded by Alzheimer's disease!

      Dr. James Hawke, I hope as I write this note, you are doing well. I hope you will be able to read and understand what I wrote you. I will keep you in my thoughts and prayers.

      Sincerely,

      Estelle Fromm
      Newberg, Oregon

  2. Wow.. this really touched me as well as scared me. My Grandmother had Alzeheimer's but back then it wasn't called that. Now my Mother has been diagnosed with early stages of this disease and I am so fearful for what you experienced. Thank you for sharing your story…

    • Tisa, Your story is exactly as mine. With my grandmother, we just didn't really talk about it. My mother, her brother and her sister are beginning down that same road. I am primary caregiver for my mother, although we now have a "sitter" with her for during the daytime so that I can go back to work. It has also helped the relationship some between my mother and myself because she doesn't see my as a "push know-it-all who thinks she's crazy and tries to be in charge of everything". We tend to fear the unknown, so educating myself regarding the disease has eased that somewhat. Of course, there's still a lot of unkowns. I have stopped doing the things I enjoy and pulled away from all friends. These things are my own fault. I now know that in order to care for my mom effectively, I have to care for myself. You'll experience just about every emotion there is. You may feel as though you are in the twilight zone at times – this is temporary, you will soon shake it off and return to real life! Smile! Be Happy! We are still living life – whether it's life with or without Alzheimer's!

  3. HI Stephanie, I will walk the Philadelphia 2013 ALZ walk for my Mom. I still have her and yes it is heartbreaking and yes she thinks I am her sister but I feel as long as she knows my face I am blessed. You are in my thoughts and prayers. I will put your Dad's name on one of the flowers I have hanging on my office wall in memory for you.

  4. Hi Stephanie, I will be walking this Sunday in Worcester, MA for my Dad. He died in 2011, after a six year battle with Alzheimer's. It's such a horrible disease. My Moms sister also developed Alzheimers. So I have it on both sides of my family. I hope research can go forward and we can find a cure and ways to deal with it when someone has it.
    Take care.

  5. This story is all too familiar.
    Stephanie, I will be walking in honor of my great-grandmother, and in the hopes for a better future with a cure so you and I don't have to worry about ourselves.

  6. I know what you went through. My mom had Alzheimer"s. She lasted about 3 years. I know my mom is in a better place because she now have her mind back. My daughter and myself we walk every year in memory of my mom. Hopefully a cure will be found. God Bless you and your family.

  7. After reading your post it brought tears to my eyes. My mom had Alzheimer's and passed away 4 years ago. My grandmother, her mother, had it too I believe but back in those days it really wasn't called Alzheimer's ….it was called "hardening of the arteries". It is a horrible disease and robs even the most active person, of their speech, motor skills and personality. My mom was so active and outgoing and in the late stages it was so hard to see her just sit and stare. I too worry about 'forgetting' words now but have to remain positive that I will not have the same fate as my mother and her mother. Thank you for sharing your story

  8. i Stephanie.. Reading your story is like my own. THANK-YOU !!!

  9. This is so like what happen to my dad. I am now 66 and near the age when his signs appeared. I am walking the Bangor Maine walk on October 5th as I have done for the past five years.
    .

  10. Stephanie, I understand your feelings and fears so well. My Mother was diagnosed with Alzheimer's. She was a vital, energetic, talented woman. Like you, the first thing I noticed also was her inability to write.checks, difficulty in dressing, and then the disease gradually took over. Six years later, she could not do anything for herself and I do not think she had any awareness of what or who was around her. Her Mother had dementia which was probably the same disease. My brother now has been diagnosed with Alzheimer's and we are losing him little by little. I live in fear that I too will be struck with this fate. I walk for my Mother, my brother, my aunt, my maternal grandmother, and for a cure so that no one else in my family or anyone else's family will have to deal with this horrible disease.. My daughter, my grandsons, and I are walking in Dayton this weekend for a cure.

  11. I think the first sign in my mother was repeating what she had just said. I think she thought she might not have told me and I needed to know . she wouldn't put her purse down and would constantly look in her billfold and then either my sister or I was getting her money. She wanted to go home all the time even though she was home, She said to fix her daddy's supper. he had been dead for years then later she wanted her mother and I made the mistake of telling her she had died when I was two and she started crying and said "my mothers dead and no one told me and I didn't to go to her service and see her one last time". I made several mistakes and my sister and I would take turns keeping her at our houses, we should have kept her in her own home where she knew where she was.She started running away and we was scared to death she would go in the street or woods. We tried ever way to keep her out of the nursing home. We went to a caretakers class and was told part of care was knowing you need help. We put her in senior care to see if there was any thing we could do. They gave a page of questions and she only got one right. In the nursing home we went. The purse went too and she was so smart, she would stand at the door and her friends thought she was visiting and let her out. She finally let me take her purse home with me and hide it. Then she waited until shift change and went to door and caught it before it closed. Another friend was going to visit her mother and stopped and walked her back, I think she was out the most of any others. She was going home, except she had no idea where home was. Once she went out with a friend and they were leaving and was on the highway just happened a man came by that knew mother and called the nursing home and asked them if they knew mother was out again and they ran and caught them and walked them back. Then all of the different stages she went through and about six more there like her and at sundown they came alive and started walking in a row around all night. They were always together and tried every way to leave. One had a car at home but she said it was in the parking lot and they told mother was going to drive. My mother never could drive. Sometimes you have to laugh at the things they did to keep from crying. The worse came when she didn't remember having children and our names. She stopped talking, eating and we had feeding tube put in when she couldn't swallow anymore and she was bed ridden from then until she was moved to hospital, she died with my sister and myself with her. Someone said we took such good care of Mother, we went every day, and we told them our mother took good care of us and this went on about ten years. I was the last person she knew we think, she would grin when she heard my voice. Watching this was the most depressing thing to watch and know you can't do anything to help. And as you said every time we forget something, lose our train of thought, look in our purse, we wonder if it's our turn.

    • Louise,

      When a person has Alzheimer's disease, they go through so many stages of physical decompensating. Your Mother displayed, some classic symptoms of Alzheimer's disease. This was evidenced, by her repeating words or phrases over, and over, again. When my Mother lived at home, with my Dad, we had private caregivers come to the house, and assist my Mom. Unfortunately, my Mother somehow got out of the house and went wandering, all night long. According to my Dad, it was all over the news in San Diego, when my Mother went missing. I received a phone call that my Mother went missing, due to "Sundowners from Alzheimer's disease". I did not know what to do ~ living in Oregon, as my beloved Mother was missing, in Southern California. Fortunately, a jogger found my Mother, the next day. She was immediately put into a Memory Care facility, for her own safety. It cost my Dad quite a lot of money, to have my Mother reside in a 24 hour Memory Care facility, but she could no longer live in her own house, due to wandering.

      May your Mother rest in peace now ~ God bless her.

      ~ Estelle Fromm
      Oregon

  12. I will be walking in Wichita Falls, Texas because I counsel caregivers and their families. I walk because my husband's grandmother had Alzheimer's and no one believed it. I walk because someone very dear to me is watching her husband disappear into this disease. I walk because this could be me.

  13. HI , I hear you loud and clear.my Dad battled this disease for seven years! I lost my dad to this horrible disease 3 years ago this past September and I miss him so much. I will be walking here in Massachusetts south shore on Saturday.. I do hope some day they find a cure and stop taking the lives of such remarkable people that hold such a special place in our hearts. Best of luck to everyone that will be walking in honor of your love ones..

  14. I share your same hopes and fears. I am the sole caregiver for my 93 year old mother with ALZ and The Alzheimer's Support Group in our local community has been my lifeline over the past years. I encourage everyone who is a caregiver or a friend of the family who occasionally gives support, to attend a support group meeting and make themselves aware of the information and help that is available. The knowledge that we gain will ultimately help ourselves to plan for our own futures.

  15. I WALKED AT ELIZABETHTOWN,KY. I WALKED FOR MY HUSBAND WHO PASSED AWAY DEC. 5,2011, HE CALLED ME MOM THE WHOLE TIME HE WAS ILL. HE WAS DIAGNOSED WITH ALZHEIMER'S IN FEB 2010 SO I HAD LITTLE TIME WITH HIM. I HAD A LADY STAY WITH HIM OF THE DAY WHILE I WORKED, BUT AFTER MY 8 HOUR DAY OF WORKING AT KROGER WAS OVER THEN THE REAL WORK LAY AHEAD OF ME AT HOME I TOOK CARE OF HIM FROM THE TIME I GOT HOME UNTIL THE NEXT MORNING WHEN I WENT BACK TO WORK. I CHERISHED EVERY MINUTE OF IT TOO. AT NIGHT HE WOULD SLEEP IN THE LIVING ROOM ON THE COUCH AND ME BESIDE HIM IN A RECLINER. AFTER HE BECAME BEDFAST HOSPICE MOVED IN A BED FOR HIM AND AT NIGHT I SET THE ALARM TO GET ME UP EVERY TWO HOURS SO I COULD TURN HIM THUS PREVENTING BEDSORES . I SLEPT BESIDE HIS BED IN THE RECLINER AND AWOKE TO TURN HIM. EVERY NIGHT AT 2 A.M. HE WOULD HAVE A PANCAKE. THEN AFTER TURNING HIM HE WOULD GO BACK TO SLEEP,
    I WENT THRU ALL THE STAGES FROM SUNDOWNERS TO BEING COMBATIVE BUT NOW CHERISH EVERY MINUTE.
    I ALSO WALKED FOR THE MANY THAT CAN'T WALK FOR THEMSELVES AS WELL AS MY HUSBAND.
    EVERY ONE PLEASE REMEMBER THAT IT IS NOT THE PERSON DOING ALL THOSE STRANGE THINGS IT IS THE DISEASE.

  16. I would like to walk. My father had severe dementia at age 62 and I lost him to the disease in 11 months (10/17/13). This is truly a horrible disease. It was hard to watch him decline so quickly.

  17. i Stephanie.. Reading your story is like my own. THANK-YOU !!!

  18. Omg…reading your story Stephanie it has inspired me to be part of this fight starting now 2/10/2014! My mother Nidia Ayala suffers from Dementia/ Alzheimer's…for a few years now, I really do not know where one ends and the other begins but the dreadful truth is that I see my mother slipping away from me…in her own world of no substance and it has been killing me slowly. I have read every testimonial on here and each story is so familiar to my own. My mother has developed a bed sore due to a colon surgery that has left her immobile for months where I feel this disease has taken more of its power. I feel so helpless and heart broken to not be able to help her in any way.
    I am part of Synergy Eduacation and I will be having a fund raiser on 2/16/2014 on behalf of Alzheimer's…"Let's find a cure..you're not alone" it will be my 1st of many. On behalf of my mother Nidia Ayala & I promise to be an instrument of power to advocate for the loss of my mother voice and so many others!! I am a responsible, loving and authentic leader and I have just found a passion that I thought was just my own suffering in silence thinking I was alone. I will voice my own voice to reach out for those who think they are alone letting them know they are NOT ALONE!! I will build a team to walk, I will find out what it takes to have one earlier in this year in my area, however I am in my early stages of pregnancy the dates in my area of New Jersey and New York start in September 2014 I will still support in every way capable to continue this fight in support of a cure, research and the promotion of Brain Health. Thank you for all your sharing of this dreadful illness and I also thank you all to have inspired me to open and offer my voice in this legacy of hope and unity to our lost loved ones who are so very dear to us. Bless it Be!!!!

    • Nance, This post is to help you understand the relationship between Dementia and Alzheimer's. Dementia is the umbrella disease. There are many types of Dementia with Alzheimer's being the most common. About 71% of Dementia sufferers have Alzheimer's. Think of it like Cancer. Cancer is the umbrella and there are many many kinds of cancer. Breast, lung, prostrate, etc. A person with Dementia can have more than one kind and often does. The only absolute way to discover exactly what Dementia a person has is through an autopsy after death. Jill Waltenspiel

    • I apparently hit a wrong button, Nance. My name is Jill Waltenspiel and I just posted an explanation of the relationship between Dementia and Alzheimer's for you. Hopefully, it will post for you. If not, feel free to contact me.

  19. Can anyone say how much money was raised in 2013 for THE WALK TO END ALZHEIMER'S. I walked in the Anaheim walk and would like to submit a picture and info in the Inland Empire, Press Enterprise. Can anyone quote an approximate amount that was donated?

  20. I certainly understand what you are going through, my mother suffers with Alzheimer and dementia. I care for her daily. Some days she is on point and others well not quite as alert. She has been my best friend and I cannot let her down. I try to make the most of everyday in her life. My family found out she had this disease about 6 years ago. It has been a long and difficult journey, to see some you love that once showered you with love but now don’t recognize you is painful. I am constantly being called her sister in law(who passed away about 2 years ago). My dad lives in a different city but have signs of senility. It really gets hard and the support group is about 45minutes away. It is truly as if I’m alone. I am praying to God for a medical breakthrough because I know it is hard for her to want to say something but cannot respond. I will walk for my mother who have been the root of all the positive progress in my life.

  21. My mother passed away in July 2013 I share with the first time I walk me my son daughter-in-law Grandson and great-grandson and husband and one friend i’m still down I want to know how Hausken that I help regarding this fight every day it’s hard for me because my mother was taken away from me family member use that towards me to keep my mother away I was her for all my life Worked hard for her gave her motivation one day it was taken away from me like a year and a half before she passed away my sister told her she didn’t have no more siblings living I was the only one who would take care of her she came into her life one year and my mother went downhill she wouldn’t let me see my mother no more my mother at the end didn’t even know who I was in the last five years I had six family members would passed away and I took care of all of them with no financial help but God knows I did it out of my heart so now that’s why I walk to help that bite of that sickness

  22. The greatest man I have ever known and my hero passed away two weeks ago today from dementia with lewy bodies. I watched my hero become confused and lose his zest for life. Many times he was unable to recall members of the family and would need to be reminded. My mother watched her soul mate slip away and it simply broke my heart. For his memory and the memory of all who lose their battle everyday we must find a cure. I know my father would want his family to stand up to this horrible disease and I stand committed.

  23. Good for you, Stephanie. I am sorry about your Dad. This is such a heartbreaking disease. At 61 my husband was diagnosed with FrontalTemporal Dementia. He was gone in three years. I learned a great deal living with his disease. Everyone does what they can, and some people can't do anything. That was a very hard lesson for me to learn. I really struggled with anger and disallusion in learning that lesson. I am co-captain for the Roseburg Oregon Walk this year. Good luck with all you do to help end this horrible affliction.

  24. Stephanie ~ thank you for sharing your personal blog, on Alzheimer's Disease. I can relate 100% to what you wrote, in your blog. How seeing your Father, decompensate to Alzheimer's disease, was emotionally devastating for you. I feel the same way, as my Mother currently suffers, from Alzheimer's disease. I have been surrounded by Alzheimer's disease, for most of my life. When I was a young girl, my Irish Grandma, had Alzheimer's disease. Eventually, my Irish Aunt, and both my Irish Uncles, were diagnosed with Alzheimer's disease. In 2009, my beloved Mother, was diagnosed with Alzheimer's disease.

    When I was notified about my Mother's diagnoses, felt such dread, hearing the news. My Mother currently lives in a Memory Care Facility in Southern California. I try to visit her as often as I can, flying down for Southern California, from Oregon 3 times a year. My Mother no longer remembers me, but I enjoy seeing her, and just holding her hand.

    My greatest fear is that some day, I too, will get Alzheimer's disease. When I forget a word, or name of a person, I feel my heart beating quickly, and begin to panic; that I am one day closer, to this dreadful disease called, "Alzheimer's Disease".

    Stephanie, I appreciate all the work you do, to bring more awareness about Alzheimer's disease. May your Father rest in peace now ~ God bless him!

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