Sep 202011

February 16, 2004. That’s the day we lost my grandfather. Well, my dad’s stepdad, but he was always considered my grandfather, affectionately P-Pa, from the time I was born. That year, I was in my final semester of college and didn’t expect the end so soon.

The Diagnosis
I’ll never forget my grandmother sitting us down to tell us the diagnosis. My sister and I were in our early teens. Alzheimer’s disease. Sure, we had heard of it, but that was supposed to be an old person’s problem. Our grandfather was only in his 50s. Okay, so he forgot where his keys were or left something behind somewhere. Who hasn’t done that before?

The diagnosis didn’t ring true for me for quite some time. He seemed like the same loveable man I had always known. The grandfather that would rush home for lunch on the days he knew we were staying at their house. The same grandfather who had climbed around on the floor with us, let us play dress up with him, and played music for us. Surely this old person’s disease wasn’t going to affect him. He was still young. There was still time.

Our sweet grandmother tried to get us to read literature on Alzheimer’s, but being a typical teenager, I just didn’t want to know. I didn’t want to think about what may be coming. I didn’t want to think about how it might end, would end.

The Progression
The progression was slow at first. It was early onset, as they say. He would forget little things. For the longest time, I didn’t really notice much of a difference. And then it seemed to grow steadily worse. He wouldn’t remember us when we’d visit. I know many people have experienced this and I know I’m not alone when I say that it feels like a slap in the face the first time. This tall, strong, loving man was starting to drift away from us.

The family would visit for holidays, birthdays and random gatherings. We’d find our usual spots in the living room and glance at P-Pa, sitting in his usual chair. The chair he held me in when I was a baby. The chair he sat me in when I was barely a toddler with his headphones balanced on my ears. The chair where he shared his interest for CB radio. That chair had been there for years, but the man in the chair wasn’t the same. Every now and then he’d reminisce about something from his youth. Something I had never heard before, but then he would grow quiet and not recognize any of us in the room. Including my grandmother.

He was the love of her life. She had found a second chance with him and the love they had still continues to inspire me. He made her so happy. It was so hard to watch her suffer as he suffered. She continued to stand by him as the disease took him away from her. She served as his primary caregiver almost to the very end. She is so much stronger than her little five-foot frame would suggest. She is a fighter. They both are the reason I fight.

The End of Alzheimer’s Starts with All of Us
Through a leadership program in 2010, I had the opportunity to help start a young professionals group in the local Alzheimer’s Association Chapter. I now serve as co-chair for that group. This is my opportunity to remember my grandfather and to honor the strength and resiliency of my grandmother. This is my chance to make up for those teenage years when it was too frightening to learn about this disease. This is my chance to demonstrate to our society that this is not just an old person’s disease. This is my chance to show that that The End of Alzheimer’s Starts with Me.

Kelly Williams is being honored by the Alzheimer’s Association as an Alzheimer’s Hero during September, which is World Alzheimer’s Month.  Wanting to help others after losing her grandfather to the disease, Kelly helped launch YAAA! (Young Adults for Alzheimer’s Awareness) in her community. As YAAA! co-chair, she created the group’s first fundraiser, a black tie bowling event.

  36 Responses to “This Is How the End of Alzheimer’s Starts with Me”

  1. All of us who touch or have been touched by Alzheimer's are heroes. Thank you for sharing your heroes journey, Kelly.

  2. We share the same similar story, except it was my Dad. He lost his 8 year battle to this HORRIBLE STUPID DISEASE in April of 2011. He would have been 67 on August 1, 2011. We miss him so much!!!!

  3. How old was your grandfather when he was diagnosed and how old when he died? My dear wife, now age 55, was diagnosed last year. Thankfully, so far, things are mild. The watching, waiting and wondering are a challenge for me.

    • It's one day at a time for all of us

    • My grandfather was in his mid-50s when he was diagnosed and we lost him when he was just 64. I pray for you and your wife during this trying time. She is blessed to have someone like you caring for her and helping her. Please be sure to get the help and care you need, too. Enjoy each moment the two of you have together.

  4. Kelly, you sound like an extremely bright young person. Alzheimer's is a little like dying every day to the people that love you. I have known people with it and have seen the suffering in the eyes of their loved ones. Hopefully, some day a cure will be found. Keep up the good work.

  5. My mom was diagnosed 4 years ago at the age of 67, but looking back, I know she had the disease at an earlier age. I can see different signs that weren't there last month or six months ago. I truly is a sad and horrible disease. Keep fighting the fight Kelly!

  6. I was 50 & 1/2 when they told me I have early onset, Now I am 53 and take all kinda meds and I hope they will find a cure for the younder people. It makes my heart sing to hear of this young lady who is doing something about it. Thank you for taking this on!

  7. Thank you for sharing your story and much sucess to your group.

  8. Your story has touched me in many ways. My mom had alzheimers. She passed away August 3, 2010. She lived with my husband and I for six years. I was forturnate because I had great knowledge of the disease. I work at an Adult Day Care for people with Dementia, Alzheimers, Parkinson's disease and other disease that effect the job. It is the best job I have ever had. God Bless all of you are have loved ones who have this horrible disease. One thing I must say is may sure you have a support system in place.

  9. What a beautiful, inspirational story! Thank you for sharing it! My Mom has had Alzheimer's (we think) a lot longer than when she was diagnosed5 years ago. She is now 79 and doesn't know who my sister's or I are anymore. She knows my Dad is someone who loves her but she doesn't know him as her husband anymore. It kills me now that I live so far because when I do see Mom, she has slipped away so much more. My Dad is my inspiration, what a beautiful example of what the power of love can do! He stills sees her every single day and makes sure she is dressed, clean, eats and happy before he puts her to bed every night only to return the next day. I pray for you MRW and for everyone who has Alz. and the care givers. I pray for a cure to be found soon!

  10. Kelly, I took care of my Mom last year because she fell at home(she was 76). The first week she stayed with me I realized just how her alz had progressed-no one had any idea… It is truly heartbreaking the progression of this disease-she never knew who I was. She passed away in January-we were lucky to not have to see her go through the worse of the disease. My Sister-in-Law passed away from alz 2 years ago and she suffered tragically. I had an Uncle who passed away because of alz…. I fear the day I ever get told -you have early on set alz. All any of us can do is fight for better treatment or a cure…

  11. i truly can relate i lost my father in 1996 on christmas day and my mother april 4,2008 and my auntie ethel in 2003, my godmother in 2001 .this is a terrible disease it was very hard to watch your family just be totally taken away like that with us not knowing what they knew inside before they left us we must all do something to stop this awful desease .

  12. So many things to say and I can't seem to type any of them. I hate this disease and it scares me. I hope they find a cure soon. Watching my grandmother slip away from us breaks my heart. God bless all affected.

  13. My Mom was 54 when my Dad took her to Mayo Clinic and got that horrible diagnosis of Alzheimer*s and she lived to be 63 and could not talk from age 59 and forgot how to suck from a straw, which was horrible, as she loved Malts/shakes and one day could not suck the straw……Please Pray for a cure…..

  14. This was absolutely beautiful. I too lost my grandfather and the pain I've felt from his passing has yet gone away. I've vowed to help the cause in any way possible and I intend on doing so. I want us to be able to beat this, to cure this for their memories and ours. I just hope that we can find the cure soon.

  15. I am truly touched by this story. My mother has had Alzhiemers for the past 5 yrs that we know of. She is 71 and is now in her childhod. This is such a cruel disease…Please pray for a cure so that our loved ones will not have to suffer through this horrible disease

  16. My father is 65 and has had the disease for 5 years. He is getting very bad,very quickly. He only told us this year due to him not being able to hide it any longer. Very sad and infuriating illness.I am inspired to due fund raisers in New Hampshire.

  17. I read everyones comments and I dont feel alone. My mother is in the later stage of her fight. She has battled this for over 12 years and has not known me for the past 2 yrs. It has been the longest goodbye and I miss my Mom everyday!!!

  18. this story really hit home for me in 2 ways, i am in the process of loosing my dad to Alzheimer's. We had to place him in a home last nov when he wandered away from home. I also work in the Alzheimer's unit of a LTC facility so i take care of people in the later stages of the disease. i really hope someday soon they will find a cure for this vampire of a disease who suck the very life of the person away and leaves a empty shell behind.

  19. my moms had alzheimers for at least 6 years (that we know of) and my dad was her primary caregiver until he just couldnt physically do it anymore. he fed her, changed her diapers, bathed her and devoted all those years to her because his philosophy is that when he uttered "for better or for worse" 52 years ago, he meant it. my moms now in a nursing home for the last year and a half where shes cared for by people who i call angels on earth. isnt it wonderful to know that your grandpa and my mom were truly loved by devoted spouses? my dad felt guilty for placing his wife in a home, mostly because of the horror stories that go around and, of course, he felt lonely. just recently has allowed himself to meet other ladies for companionship which at age 81 was quite the challenge (dating has changed alot in the last 50+ years!) thankfully, hes now seeing this lovely lady who has recently placed her own husband in the same nursing home as my mom. Kudos to you for launching YAAA! and actually doing something positive to fight this horrible affliction!

  20. I was just 17 when I was told that my father was diagnosed with early onset Alzheimer's at the age of 48. Like you I still remember my mum sitting me and my younger brother down and telling us about his diagnosis. I dont think i fully understood what alzheimers even was then, we had always joked about how dad had a bad memory but I never really thought anything of it. Just over three years later we are lucky that it is still only mild and that we have great family and friends for support. I think that its great that you are showing its not just an old persons disease and can affect people of ALL ages! I come from New Zealand and we only have a small Alzheimer's community (I would not even know about it if my father was not affected by the disease). Im inspired to help raise awareness and get rid of the stigma that comes with alzheimers. Keep up the good work 🙂

  21. I too have a love one with this disease, my mom. She was diagnosed 7 yrs ago however, she hid it for as long as she could. Mom had confided to my sister-in-law that she was afraid that she had the disease as she was getting lost in her house. Finally we had mom tested and the results were devastating. Mom is now in a nursing home where her disease rapidly is taking over. I no longer can hold a conversation with her nor reminisce of days past her eyes are blank and the sparkle that once was there is now burned out. All I can do is hug her and kiss her and tell her that I love her. I know she is in there somewhere. My prayer is that they find a cure soon so no one will ever have to suffer. This is a horrible disease.

  22. Hi, i admire the courage your family had during this hard time, i'm going through with it mnow "my Mom". She's in stage 4 but; will ask me when someone comes 2 visit, her own son & doesn't know who he is. She is mostly being taken care of by my Dad & u can see the big change in him ( the emotional part) so we are all trying to help them the best as we can for Mom doesn't like people to come to the house. She let's him do the cooking for her but; feels a little mistrust in him also. I have had the wonderful time with Mom & there's a sound i make when i call or come over, then she knows who i am. Otherwise she knows Dad. Anyways i am enjoying everyminute i can & make sure she doesn't get hurt. Thank you so much for your story, may the Lord give u strength to carry on. God bless.

  23. Thank you all for your stories.. My mother is 76 and was diagnosed 4 yrs ago but in looking back I can see that the symptoms were there several yrs before.. Each week she becomes a little more distant.. This is the creulest disease.. it robs you of everything and then it takes your life.. But one day there will be a cure.. and it starts with each of us .. telling our stories.. and contacting our governmental bodies and making Alziemers funding and research as important as anyother disease.. because this is the silent but living killer..

  24. So sad my father after 43 years at the only job he has ever had in his life was fired last January,2011. His boss told me that he just could not do his job the way he use to. I just was not happy with that answer my father thought that everyone at work was sabotage him and trying to get him in trouble. Well a month later at age 61 we found the truth ALZIEMERS. Today the doctor told me that expect his life spand to be 2 to 10 years. I cried so hard to think that the man I love so much and has always been here for me good and bad will die from this today is very sad day for me.

  25. Thank you for sharing your story. I lost my Grama to the disease a few years ago and I have started to using my running as a means to raise money for the cause. Being involved helps me and my family deal with terrible disease.

  26. Thank you all for your posts – I had no idea that my story would spark such wonderful responses. While this disease is devastating, it is comforting to see what a wonderful support system there is throughout the world. I know that we WILL find a cure. To those who have served or continue to serve as primary caregivers – God bless you all! The time and energy you focus on your loved ones is truly amazing and such a huge reason as to why I am determined to help this cause until the day comes when we can say WE HAVE FOUND A CURE!

  27. I have had 5 loved ones now who suffered and were diagnosed with this dreadful disease. My paternal grandfather..the leader of our family..a strong man who taught my father all he knew..he could do anything with his own two hands from help my father build our home….then he and my father built Grandma and Grandpa's second and final home..mechanical knowledge and abilities, carpentry, you name it…strong man..

  28. I watched wither away and become frightened and helpless..I never again thought I'd have to face this again..then Grandma had it…we lost her ….she was indeed a wonderful grandma, mother and wife…my mom and dad and i and my sister till she moved out..went there almost daily..their home was just that homey..and all the grandkids loved it there and them…then came my mother in 2008..she'd had what we thought was a nervous breakdown/it was pretty much that well as she became physically stiff and spoke like a robot..and was so scared..the doctor in the emergency room diagnosed her

  29. …i will never forget that day..I said what is the problem..he said Alzheimers disease..she has Alzheimers disease..i felt weak from head to toe..and the life sucked out of me..this could not be …not my mother…I was a medical support assistant in a medical facility and I knew the term well….I said can you spell that..thinking I must have heard wrong..time stood still….mom was sitting on the beside her…the doctor left the room..i calmly said i'll be right back…I went in the hall and broke down…this couldn't be happening …I can't do this..not her..she was my best friend..then to sum up skip to this year…dad is diagnosed…i saw the signs…I sat back and watched…I wanted to be sure…sure enough…I had to face this..and have the doctor test him…yep…as i knew ….

  30. I didn't want him/the doctor to announce it as if he wasn't there as he had done my mom after she learned …she had a hard time with it…everyone's awful..I could write a book..and I will…but to sum up …I lost mom in May ..the 23rd to be exact..I lost a part of me..and she became anorexic and had delusions, hallucinations, ideations…she had persecutorial ideations..she thought people were trying to kill her..she gave up went in doesn't know she's the phone rang…this is like the 10th time at least his heart also bad gave out..they told me he was unresponsibe on way to hosptal by ambulance…he was dnr status…I will never forget that call ever…they said doesn't look good.. I knew he was gone..he's holding on for the family, mainly her and it breaks my heart..I have been involved in their health care/caregiving since 2002 but since 2008 daily and am poa..I am ready to drop…this must be given the utmost attention to find a cure..I'm exhausted…so I'll end with saying god bless all who have been touched and or are living in this hell as I am right now.

  31. My Dad has this horrible disease. He was diagnosed 3 yrs ago. My Mom was his primary caregiver until Aug. 3rd of this year. She had a stroke and in 30 days she was gone. My brother lives in the Dallas area, so now I am Dad's primary caregiver. This is the hardest thing for me to do. We are lucky, Dad is 87 and right now can still drive, lives at home. Right now we are trying to convince him that someone needs to come in and cook for him at least once a week. One can only eat so much fast food, IF he is indeed actually going out and getting it like he says. He and my Mom had 65 wonderful years and they loved each other very much. We were just stunned that she went before him, even though she told me many times that she would go first and apologized to me that all this would fall on me. Keep fighting Kelly and I will also!


  33. my mother in law is in the bed unable to move and talk , i beliveshe is in stage 7 now. she wont eat or drink .she inin the fourt day of eatting notting ordrinking very litle she getschocked on small amounts of water and her lig medical now. help is this the signs of the end for her

  34. So many times I have a hard time remembering things, I drive my boyfriend crazy, and the one before him too. Although the ex would never take any blame for himself, so I thought he's just saying that to get out of something. Now I wonder if I'm ADD. My mom is getting very forgetful even though she was a lifelong vegetarian healthnut and a vegan for decades now. The HMO psychiatrist said I'm borderline ADD, so no drugs were prescribed. My Dr. says you don't have Altzheimers, you're way to sharp for that. Well the Michael Moore's Sicko movie makes HMO physicians look bad in that they have a vested interest in underdiagnosing patients so they can get bonuses. See the movie! It's very scary. I don't get too many UTIs, but always losing keys, wallet, or forgetting something is horrible. Maybe I got what mom's got whatever that is. It's al very depressing.

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