Sep 092016
 
steedwalk

Marilyn in Scotland

My mother Marilyn was diagnosed with Alzheimer’s in her late 60s, but I recognized that something was wrong in her mid-60s. She had been displaying signs of nervousness and was more forgetful than usual. She had always been a very outgoing and confident woman who dressed very fashionably. One day I noticed that her skirt hem was hanging and that she wasn’t taking the same care in her appearance.

My mother succumbed to Alzheimer’s disease one year ago. She was 82 when she died.

Now I am in my mid-60s. After experiencing what happened to my mother, I wouldn’t want anyone else to have to go through what she did. When she began wandering and leaving their home, my stepfather couldn’t keep up with her, and she was moved to a memory care facility. While there, she broke her hip. That led to three years in bed, never walking or talking again.

Every story about Alzheimer’s is heartbreaking.

We all have to watch someone we love slowly disappear. My family wasn’t even given a respite. One year ago, my stepfather too was diagnosed with Alzheimer’s. Our family’s first reaction was: “Oh no, not again!” It seems like almost no one we know is unaffected by this disease in some way. That is why I walk.

I have walked in Walk to End Alzheimer’s for eight years and have raised over $35,000.

I am an artist and have put on shows in which I have donated 100% of the proceeds to the cause. I collect for Forget-Me-Not Days and traveled to Springfield, Illinois this year to implore legislators to procure more funding for the Alzheimer’s Association. I never knew that raising funds for Alzheimer’s would become my passion. I walk because my mother was my best friend. I walk because she couldn’t walk for herself. I walk because I know she would have done the same thing for me.

It feels like we have rounded a corner. It seems like Alzheimer’s is finally getting the attention it deserves.

I have faith that a cure will be found. That takes a lot of funding and research, but I believe that if everyone who has any connection to Alzheimer’s would walk and spread the word by advocating on behalf of the Alzheimer’s Association, the cure might come faster. I have rarely met anyone who hasn’t been touched by this memory-robbing disease. We need to fight for all those people who can no longer speak for themselves, like my mother and so many others. We must walk.steed

About the Author:  Together with her family and friends, Judy Steed is participating in Walk to End Alzheimer’s with her team “Marching for Marilyn.” You can visit Judy’s Walk page here.

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  25 Responses to “We Must Walk”

  1. Thank you from the bottom of my heart. So many of us have been affected by Alzheimer's. In 2013 my wife and I moved from Denver to Mesa in order to care for my mother after she was diagnosed with Alzheimer's. While caring for my mom, I began to notice little changes in my wife. Forgetting a couple of ingredients while cooking, misplacing items and getting lost while driving. She was only 60. As her symptoms became more obvious, we had to place my mother in a facility close to a niece that could visit her several times a week. Shortly after we moved back to Denver and several visits to numerous doctors she was diagnosed with Alzheimer's. After the shock lessened we decided to move close to the KU Memory and Alzheimer's Research Center in Kansas City so my wife could participate in research studies.

    We walk with hope that a cure will be found. We know it is too late for my wife so we walk for those that may be diagnosed in the years to come. We walk for the spouses, family members and loved ones that have Alzheimer's and for the caregivers that give so much of themselves.

    Thank you again for all you have done and will do. We need to make more aware of this terrible disease. When someone questions me or is apathetic about AD,mi tell them, if you have a brain, you can get Alzheimer's.

    • I am so sorry to hear that both your mother and your wife were diagnosed with Alzheimer's, Walt . I know the pain you must be going through and am so impressed that you are still taking the time to walk for others who may get it in the future. I will keep you and your family in my prayers. You are a strong man and a wonderful example to others.

  2. My grandmother was diagnosed in her late 70's. Pretty sudden and it all went downhill in a matter of a year. Right now she's just totally bed ridden. 24/7 nursing care. It gets really hard to see. She used to be the most vibrant woman I know. I mean she chased down my grandfather with a machete for womanizing. To see her like this. There are no words.

    • I know exactly what you mean, Matt. Only others who have been through this with their family members can truly understand the sadness. Many people think it's just memory loss and have no idea about the behavioral changes. You are in my thoughts and prayers during this most difficult time.

  3. My mother in law was diagnosed with Alzheimers when she was in her early 70’s. We noticed her forgetfulness with many things along with experiencing speech problems. Her personality had changed as well. She probably had this disease for awhile and we didn’t know. She was a vibrant and very young looking Italian woman who loved life and her family. She raised five boys and was a nurse for many years taking care of so many other people. We had to move her out of her apartment into an Alzheimer facility so she could be cared for and monitored daily. We knew that was the best for her. In July of this year she took a downward turn very quickly and we knew she would not be coming out of this. 4 weeks later we lost her (on August 27th). It’s so heart breaking to watch a loved one “live” through this disease. I hope there is a cure in sight and some type of breakthrough soon.

  4. I just participated in the walk this month in Alabama. My family and friends walked in memory of my dad, who died this year of Alzheimer's. My dad was 80 years old and believe me, I was hopeful he would live well into his 90's like my grandfather. It was important for our family to not only walk for him, but for his brother who has recently been diagnosed. This disease not only affects the person, but the entire family. More people are being diagnosed even in their 50's which is earlier on-set of Alzheimer's. We must continue to bring awareness to our state/federal government and to our communities so that we can find a cure for this dreaded disease.

  5. I too lost my loving mother to this horrible disease. My mommy fell and died seven days later. At least Helen knew me until she went into a coma. I walk for the caregivers and for those that lost their loved ones. Our stories must be told. A cure must be found! Missing my mommy in heaven

  6. I am 60 years old; and I would love to know where everyone is walking, for Alzheimer's.

    I live in St. Mary's County.

    Hope the walk will be soon, and close to wear I live.

    My e-mail address is: maggie.dobry@outlook.com; or maggie.dobry@icloud.net

  7. This was the first year I walked for Alzheimers/Dimentia…My reasons were mostly personal as my 98 year old mother has Dementia…I have been her sole caregiver for nearly 10 years and I have seen her go from a vibrant active woman to very forgetful…It could be worse..But it is still difficult…Last year my mothers sister passed from the same thing..It is a very heartbreaking illness ..and many of my acquaintences parents have experienced the same thing..That was my turning point..This year I would walk….The amazing thing is I included my Mom in the walk and happy to say she completed the 2 miles in the miserable Florida humidity and heat.. I couldn't have been more proud of her..but then she was always a walker..Others from my church joined me..It was a great day and I was amazedd at the turnout in Ocala…I hope that next year my Mom will be able to walk at 99…..

  8. I walked in kirtland Ohio last week. My mom was diagnosed with Early onset Alzheimer’s. At the walk, one of the speakers was talking about how you have lost your parent before they have even passed. This is so true. Trying to go from roll of daughter to support person is not easy. My dad is her sole caregiver and I give him so much credit – my mom still realizes her mind is not working but gets so upset when he tells her anything. Golden years should not be like this – we need to continue to walk and get our government to do more for these people who have been a big part of the community. It is Definately a scary disease !!

  9. I don’t know of a walk that is my area but I would certainly walk!!! I just lost my husband to Dementia a week ago today – mbelieve he had it for several years before he was finally diagnosed – what a cruel and heartless disease this is – he also was one of the kindest men I’ve ever met – and he turned into a demon sometimes – but with wonderful caregivers while I worked I was anole to keep him at home until he died – he too took a downward turn suddenly and it was over in a matter of days –

    If anyone knows where,these walks are in Texas I would love to know .

  10. I too am walking this year! My mother Mary lives at Eastbrooke Gardens with this cruel disease.

    It is so painful to watch this disease take my mom away from me, little by little!

    Lets join together and find a cure!

  11. I AM WAID THAT MY MOM WILL NOT RECON MY VOICE. SOON

  12. After reading all these comments my heart is breaking. My husband has Alzheimer’s he is 75 years old he declined very fast. He is in a home care now. I’m so sad it’s just been one week and it’s been really hard. I’m going to find out where the walk for Alzheimer’s in my area. I have to do this. My husband was a very successful business. He was a great father, husband and friend. He loved cars. Just before he got this hideous disease he build a garage to store all his cars we would go to car shows but he would never take his cars to the shows he just like to go see other peoples cars. I miss him so much.

  13. Judy, your story is my story too! The outward appearance was an early indicator with my own Mom, once ironed clothes were worn wrinkled, same outfits worn 3 days in a row! Never would she have done that! It was the personality changes that were the hardest to deal with. She always knew me, always recognized family, but her entire being changed. After 2 years of mis-Diagnosis, multiple trial drugs, including two psychiatric ward visits, Guessing senior depression?? It was Alzheimer’s…we were fortunate in that she lived 5 more years and complications from pneumonia finally brought her peace and comfort. Not the way to spend 72-79 yrs. golden years? Not. That’s why I Walk, been a top 10 team 8 years in a row…sharing our family story, advocating for a cure! Also, worried for my own future… I’ve seen the destruction of a life and finances dwindle. Guess you could say ” paying it forward”. #whilewereyoung#ENDALZ

    • Thank you for sharing your story, Candy. I agree that all we can do is pay it forward and continue to make our voices heard. At the Chicago Walk, they said that they now believe that a cure will be found during our lifetime. I pray that's true. When we have experienced what we have with our parent, we certainly don't want our children to go through the same thing.
      Congratulations for being a top 10 team—what a wonderful accomplishent!
      Blessings to you and your family.
      Judy

  14. I lost my mother 4 1/2 years ago to Alzheimer's. You notice the subtle changes and then its like a switch gets flipped and more changes come charging in. You watch everything they learned and lived their whole lives slowly disappear. While you have such wonderful memories of that person, you cannot erase the experience, the actions, the sounds that your love one displays at all hours of the day and night…….and they don't have a clue. This is an ugly disease that takes away such beautiful human beings. Until we find a cure….my prayers are with everyone who faces this ugly monster.

  15. I'AM IN THE SAME SITUATION OF YOU RIGHT NOW AND I LOVE MY MOTHER WITH ALL MY HEART AND ARE WILLING TO DO ANYTHING THAT IS IN MY HAND FOR HER.
    RIGHT NOW SHE IS HOME WITH ME AND SOMEONE IS TAKING CARE OF HER.
    I WANT TO DO A WALK ALSO HERE IN CURACAO FOR ALL THE PERSONS IN THE WORLD WHO IS SUFFERING OR HAS SUFFER OF THIS HORRIBLE DISEASE.
    NATALIE

  16. Hi my name is lynn, I too lost my mother 14 months ago from this debilitating disease that takes from everybody I was sole caregiver 24/7 365 days a year ! It is the worst when they don’t know who you are my mother had become bed ridden and I did everything and I would do it again! you c I was going to put mom in a home but I couldn’t fortunately I have a great husband I would do it all over again she died with me hours before we napped together n I think she knew but couldn’t say it was time she just wanted me to lay with her after that beautiful moment it was a violent death which I never want anyone to experience come back dr covorkian at least it would be painless n comfortable! Worst disease in the world unfortunately I have bad wheels I would love to walk I wanted to train my dog to be a therapy dog but while taking care of mom I didn’t realize I beat myself my body everything with some strength that u don’t know where it comes from u just do it now I’m a mess n beat down takes a lot out of your physical n emotional self wanted to kill myself but knew no one would take care of my mother I’m getting better visit her grave often n miss her so much she was my best friend in the whole world!!i am soooo scared everyday when I do something forgetful or stupid I know I’m next n I don’t want my kids to go through the that with me I’d kill myself first before putting my kids through that! My mother became a mean deranged violent person at times who also wandered but would still do it again that’s my mom n I wouldn’t be here without her!

    • God bless you Lynn for taking such care of your dear mother. <3 My mom passed last December after a horrible battle with Alzheimers. I know how you feel honey. I'm scared too.

  17. Mom is very ill with the disease she doesn't talk or walk anymore. She smiles but no longer has the ability to swallow she has been given a feeding tube to be nourished by. It is so hard seeing her that way…she was a cook at an elementary school for 36 years. She had a stroke in her late 50's and began to show signs of the illness in mid 60's. I pray that a cure is found for this illness.

  18. It was 2008 when I learned about early onset Alzheimers. My mothers Dr. gave me the poster off the back of his door to read and said get prepared. No one could ever prepare for this heart wrenching disease. I have become a caregiver for both my mother and father who both have Alzheimer’s. Shortly after I moved them both in with me, I realized I could no longer stay in my management position of 15 years and effectively be there for my parents in the evenings. I took a 40% pay cut and started to lose everything I’ve worked so hard for. You get torn between taking care of the people you love so much, and making sure they’re safe as you try to remain a reliable employee! I didn’t want to miss a minute of what was left of my parents as they slowly become someone you barely recognize. I took off work for both of their Physicians appointments Specialist visit, Scans, Testing Packing, Moving, Legal, whatever it was I choose my parents over work soon I was not be able take care of my personal responsibilities utilities and mortgage for the first time since I was 16. I started trying to decide do they really need to see the physician for a well visit. I would sometimes cancel that one and wait for the neurologist because that seemed more important than a flu shot! Then I had tremendous guilt if I did not take one to the oncologist even if cancer would possibly not be treated it at this stage? If I can stay at work this time I can pay the bills and then see if I can take one to the doctor next month when things are better. It’s Overwhelming and after a few years of this I was not efficient than anything. I know for me I just wanted to come home and be a daughter. My parents have been married for 59 years, they tried to prepare for a simple retirement that never happened. Their life insurance was canceled, due to late payment. There is nothing to protect them, if a person pays on a life insurance policy for over 25 years perfectly on time and all of a sudden stops making their payments it shouldn’t become an opportunity for the insurance company to terminate. This is not negligence it is a terminal disease.

    I know there are so many unpaid caregivers out there it gives me a tremendous amount of hope for my generation and my children’s generation because We Walk To End and We’re talking about it.

    I am honored to do what my parents would do for me. Rest in peace Daddy 9/6/16

  19. I'm sorry to hear about your mother. My father-in-law is dealing with Primary Progressive Aphasia (PPA) and many of the doctors are treating it as they would Alzheimers. It's been really difficult for my wife who has seen an active and loving father just change so much especially over the past 10 years. Recently, he's been falling and getting worse at basic things like eating. I truly hope we can find a cure for these brain related diseases soon.

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