Oct 312011
 
Scott Russell, Alzheimer's Association Board Member

November is National Family Caregiver Month, and I wanted to share some personal thoughts on the subject of caregivers.   I was a caregiver for my father, who passed away from Alzheimer’s 15 years ago, and I was diagnosed with the disease two-and -a-half years ago.

The past.
It has been almost 25 years since my father started to exhibit the signs of dementia.  Back in those days, Alzheimer’s was not well- known by doctors and certainly the general public.  Our family did not know what was wrong.  Like many caregivers, my mother was frustrated — irritated at his behavior, and at times angry.

My Father did not know what was happening, only that things were not right. He felt emasculated and often resorted to covering up his failings of memory and inability to do simple math (like figuring out the tip after dinner); he became isolated and depressed.

Unfortunately, many friends retreated from him as time went on, as they too, did not understand the disease.  They were afraid.  My father was afraid, too, but hid it well — at least for a while.  I believe that if we had known, had he known, had his friends known, we all would have been MUCH better at dealing with the disease. Of course, knowing is one thing; having the resources available to help people with the disease and caregivers cope is another.

Fast forward to the present.

I was in denial when I was diagnosed with early-onset (also known as younger-onset) Alzheimer’s until I received the diagnosis a second time.  Of course knowing is not easy, and I, too, went through some severe depression as I struggled to cope with its impact.

But now, with resources available through the Alzheimer’s Association, my caregivers (my wife, two sons and extended family) are much better at coping with this disease alongside me.  As a matter of fact, they are FANTASTIC.  And I have gained, too.  I am OPEN about my disease, and when I tell people, they embrace it, they do not retreat.

I am so proud of my family’s support in so many ways. My wife, Amy, has been a huge support for me.  On a daily basis, she reminds me to take my medicine, helps schedule my appointments, and provides transportation since I no longer drive. Amy encourages me to work nearly every day on the things that mean a lot to me, including daily hikes with the dog, exercising at the gym, and most importantly, painting the Alzi Animals (stuffed animals that I buy and paint for donations at Alzheimer’s Association events). Amy is always there to support me regardless of the occasion. I could not make it without her!

My two sons, Josh and Nick, inspire me to make the most out of the quality time I have left.  They encourage me to live the healthy, holistic life that means so much to me and keeps me chugging along.  Together, we hike, snowboard, and whenever we get the chance, play chess to keep my mind active.

For me, the one quality that keeps me happy and maintains my positive outlook on life is my family’s sense of humor!!  Being able to talk about my limitations with humor takes the edge off for me and my caregivers.  Maybe not all families use a sense of humor in their daily lives, but if I had to recommend just ONE thing to caregivers, it would be to use that sense of humor in a positive way, because it can excite the mind, defuse delicate situations, and makes us all smile a bit more every day.

My experience has taught me to embrace this disease, wave the purple flag and ADVOCATE for those who are affected. During National Family Caregiver Month it is especially important to acknowledge and celebrate those caregivers who know and love us, and help us cope with this disease in uniquely personal ways.

Scott Russell is a member of the National Board of Directors of the Alzheimer’s Association and the Alzheimer’s Association 2011 Early-Stage Advisory Group. Diagnosed with Alzheimer’s in 2009 at the age of 60; he is committed to raising awareness about the stigma attached to Alzheimer’s and the need to address this disease aggressively. Scott lives with his wife, Amy, in Ridgefield, Connecticut.  They have two sons, Joshua, an environmental activist (age 27), and Nick, a professional snowboarder (age 23).

  143 Responses to “Facing Early-Onset Alzheimer’s with Family, Humor & Love”

  1. Thank you for sharing your story and your advice. A sense of humor and fun has become the best tool in my arsenal while helping my aunt deal with the progression of her disease. A smile is such a universal communication. God bless you and your family.

    • Very recently I had to make an emergency trip to GA. because my sister took ill and was put on life support. I was overly stressed making decisions that none of us want to consider. It had been 4 years since I had seen either of them. We talk several times a year but then one day you wake up and its been 4 years AND you almost lose your sister and you're taken aback because no one told you Mom had developed Alzheimer's.
      In the first 24 hrs, I made more mistakes than a 30 year veteran nurse should have made. I experienced a gammet of emotion as I watched my intelligent Mother need me like a little girl needs protection. Besides the general ignorance of a very selfish disease, I felt so protective over her.
      Now its my turn to care for the Mother that did her best at being a Mom, so shall I now give her the best that I can so that she is safe. She feels safe, and she is happy at whatever shes doing.
      The journey begins. A new chapter in my life begins.
      My faith is rock solid. My courage is relentless. In prayer I am convinced these can be good years and not sad ones.
      Mom's had enough of that in the life she doesn't remember much of anymore. I made a promise that I'd be there and together this disease will not steal our lives…. We'll make new memories!

    • Your story is all too familiar to me. I am 63 yo and Dx'd with early onset Alz. D. 2 yrs ago. Progression is slow but definitely is present. I have chosen to "share" only with select people. My family knows , but I generally haven't told friends. Those who know are a comfort for me and I plan to share with more friends. My dog Phoebe has been my good friend and we explore daily trips. Anyway, thanks for your posting.

  2. Thank you for sharing. I use humor every chance I can with my mother. Your note made me cry but also made me realize that I am doing things the right way to help my mom have as happy as possible time.

  3. Thank you Scott for sharing your story…I just lost my mother to Alzheimer's related disease, one week after my aunt, her sister died from complications as well. The Walk to End Alzheimer's was one week after my mother's funeral. They both were caregivers for their mother 25 years ago before she died as well. There are other siblings of my grandmother that died with the disease. I am the oldest in this next generation of six siblings. I do not know what my fate will be but listening to stories like yours is a story of HOPE for me to face whatever. I have been active with the Alzheimer's chapter WALK here in Kansas City..my team of over 80 members raised over $17,000 this year! I want to continue my WALK so maybe you could suggest where is the best effective place to continue my journey? I will keep you and your family close in my prayers! Keep the smile…my mother never lost hers!

    • Blessings be upon you as you devote time to this disease and in whatever you do! I'm a caregiver for my husband. It's my feeling that family history of the disease has SOMETHING to do with this dreadful disease. God had to bring me to the realization that this disease is like other diseases.

  4. Scott:

    You are such an inspiration to those of us facing possibly your same fate. I admire your courage, especially knowing what you are facing. I believe that it is the courage of people like you that will change the face of this disease and your struggles and sacrifics will not be in vain. I will pray for you and your family. I have a mother with Alzheimer's disease – she was diagnosed at 65, but certainly showed the signs of the disease long before that. I believe her's too was early-onset. She is now 78 and facing her last leg of her journey. It has been very difficult for us. However, I have great hope that your journey will be easier – you have educated yourself as well as your family is educated on this disease. We were not educated and made so many mistakes. Knowledge and support are key.

  5. CONTINUED MESSAGE TO SCOTT:

    I will fight this disease until the day I die or until a cure is found. I will travel the road with you my brother – I will fight the good fight for good people such as yourself and my mother. You are doing such a wonderful and inspiring thing to share your story. I will also share your story with all my facebook friends and ask them to share your story with their friends – knowledge, awareness and education are the key to facing this journey. God Bless you and your family.

  6. I agree 100% in regards to the Sense of Humor that we all need to have in order to make our lives (caregivers) go thru the many changes that come our way when caring for a loved one specially a family member. My father is 88 years old was a professional boxer he has been dealing with Alzheimer's for the past 8 years we take care of him the best that we can at home. Physically he is in good shape mentally well you know how it goes, I can only tell you from experience that when my father is involved in Exercise, Music, Dancing, Art, Conversation, Family pictures, Cooking. I guess what I am trying to say is let's keep our loved ones continue to be involved in all daily activities as long as they are being watched.. My heart goes out to all of the family members that are going thur this journey as I am. Let's continue to exercise the mind for our loved ones. If I can help in any way I am here in La Mesa Ca. God Bless you and your family :)

  7. I am currently writing a book for boomers on prosperous retirements from the standpoint of making time for what matters. My dad’s transition 3rd anniversary is tomorrow,and I must say I learned as much about myself from his grappling with this disease as I did in all my career as a therapist and business owner.My prayer is for us all as we do our part to further the cure.

  8. I, too, want to thank you for sharing your story. I was a caregiver for my mother who passed away 3 years ago to Alzheimer's related disease. Being a caregiver for my mother was an experience that I found so rewarding. She took care of me as a child, and there was never any doubt in my mind that I would not care for her when the time came. I pray for all families that have loved one suffering from this disease. My prayer is also that a cure can be found.

  9. I lost my sweet husband of nearly 36 years to Early Onst AD last year. It was a hard road where no one would diagnose him early on because they thought it was symptoms of depression due to the death of our son in 2002. We went through the denial and anger issues and my last 3 years with him were really sad and full of violence. He normally was an angel! I had no family or friends that would help, in fact, they abandoned us! I spent his last 2 years working a full time job and caregiving when I got home in the evening. We were so lonely and did not understand. After he died everyone said they didn't know it was so bad! What part of Alzheimers do people not get? It is progressive and can progrees very quickly. We spent all that time alone when just a few visits by friends and family could have helped to slow the progression or at least made him happier for a few moments! Hats off to all the caregivers! You are the real angels!

    • Hi Jane. My mother, 65 years old, was diagnosed with Early Onset AD four years ago. We started seeing signs at age 55, but doctors also told us it was depression. She was in denial, so that made it even harder to convince her to see doctors for a diagnosis. Finally four years ago (too late) we received a diagnosis. I am only 44, so it has been very hard losing my mother at my age. I have two young children who also won't have the opportunity to really know who their grandmother is and was. She doesn't know who any of us are, including my daddy. They do see though the amazing man that my daddy is in being her primary caregiver. He truly represents the meaning of marriage as I'm sure many spousal caregivers do. Thank you for sharing your story. This is truly a terrible disease that no one should have to deal with but I know we are getting closer every day to a treatment and prevention. You are right, caregivers are the true angels!

      • Laura, your story is sooooo similar to mine. I am 37 and my mother was diagnosed at 59 though we knew something was wrong for about 4 years first. My dad is AMAZING!!! He is so kind, loving, patient, and respectful of her. He preserves her dignity, guides her discretely in public, and is altogether incredible. I wish I lived closer (working on it but the housing market as it is, it's tough to find work & relocate) because I want my kids to see him and the way he loves her and cares for her. That is the greatest legacy of their marriage.

      • Thanks Laura, I am so sorry rthat you are going through this. I am so happy that your father is such a wonderful cargiver. I am lucky in that I think my husband knew me to the end. We were married for 36 years and love is all they know at the end and we sure had that! I pray for a cure, or at least better meds to control it better!

    • Thank you Jane for sharing your story – I so understand "lonely" as that had and has been a part of the life with my Mom for many years. I had an beloved Aunt and Uncle die of the disease but my Dear Cousin was right there with them. I hope you life is happier now sending love. Barbara

      • Thank you Barbara. Things are not much better now, but I never give up hope that it will get easier. Sending love back. Hang in there. It's all we can do!

    • How true, I am also a caregiver for my husband, and I understand what about feeling abandoned. Why can't family and friends educate themselves, There are so many wonderful books that explain the disease and how to work with the person that has the disease, So many misunderstood ideas or "myths" about the disease. You would think that if you care a your Father or Mother, sister or brother, like they say they do, that they would pick up a least one book or explore the internet to try and under stand what is happening to thier loved one. Either they our afraid of their owm inadequacies or fearful that it will happen to them. Sticking their heads in the sand never solved anything.

      • I have learned that one of the quickest ways to make someone disappear is to tell them that my husband has Alzheimers. I didn't know people could run so fast. Fortunately, not everyone does. But even those who don't often ask things like, "What can I do?" but then don't follow through when I tell them what we need. Because what we need is simple. He needs someone, preferably a man just so it would seem to hubby like it was a normal friend invitation, to just spend a couple of hours with him. Take him out for coffee. Ask him over to watch a movie. He might ask the same question few times or tell the same story, but other than that he is quite normal in public and they can see that at church or the Senior Center. But they won't ever do it. And don't even TALK to me about his kids. They are out of state have their heads so deep in the sand that I don't see how they can breathe, even though I have tried to keep them informed and involved. Thank goodness my youngest son and his wife are willing to help.

    • It is a shame that we do not have contact with people like yourself and your late husband. My husband was diagnosed three years ago at the age of 53. It is very hard to find people like us because he is so young. I am fortunate because I have dear friends that stand by me. My heart truly goes out to you. You are certainly an angel and trooper for all that you endured. God bless you!

    • We also had a son die in 2009. My husband was diagnosed with Alzheimers in 2011 at the age of 60, I am having trouble dealing with his disease. I have not mourned for my child and I am mad at my husband for the relationship he had with our child. I am not the care giver that he needs and that is just one more awful thing I have to attribute to my life..I have to work full time and I don't want to do anything when I get home. My husband can no longer drive so he is a prisoner in his own home. I told him to be happy years ago and that that would not include me. Funny how life has other plans. Thanks for listening.. Can't do much more than that.

  10. Thank yo so much for your story. I am a caretaker for my Mom, and a smile is about all she is still able to do at this point. I sing to her and dance at her bedside for her and she laughs and smiles, and I think we both feel better.

    My Dad passed away from Alzheimer's in May 2003, he was the 4th one of 6 siblings to die from the disease, and my grandmother, (Dad's Mom) had also suffered from Alzheimer's although at the time very little was known and they didn't really have a name for it. Laughter and music is one thing they can enjoy all the way till the end.

    Yes I am still very scared of the disease, with both parents diagnosed, and so many other family members it does scare me. I do not regret for 1 minute taking care of Mom or Dad, but I do not want to put my children through caring for me. We need to find a cure now.

  11. We are going through it now with my mom. My dad has been her caregiver, but now he is ill and my self and my two sisters are going to be picking up that role. We have big shoes to fill, because Dad has done a great job taking care of her all these years. This website has been a wealth of knowledge for myself. Thanks for sharing.

    • God bless…my Dad is taking care, full time, of our Mom & doesn't want help , even though we insist on part time care 3 days a week . We do what we can but Dad insists that he wants " to spend every minute with Mom that he can". A true love story made for movies…November is Care Giver Month and he is my hero!!!

  12. Very sorry to hear about the early onset AD, Scott. I know what it's like to have a family member going through that, as my Mom is 84 and was diagnosed 8 yrs. ago. She's been in a nursing home for 3 yrs. now, and I've watched her go from being a happy, upbeat person into one that can't talk much or barely eat on her own. Humor has not been something that was possible for me while she lived with me. Sadness, anxiety and overwhelmed feelings were more the every day norm in my life. The devastation of seeing a person you've loved and lived with your whole life was unbearable. I've come to terms with the disease and value the time I do get to spend with her. If there is only one disease that science finds a cure for, this is the one that has to be foremost! Thanks for sharing your story.

  13. Thank you for sharing your story, Scott. My beloved Andy (husband of over 46 years) died to early onset ALZ in October 2008. Until the last few months, he remained with us, at some level, with humor and grace. Indeed, family and friends and the Alzheimers Association provided the support we needed. Not a day goes by that I don't pray for a cure. It would be wonderfully encouraging for my sons.

  14. my brother just placed my mom in a home its really nice but its so hard now trying to find out what to do with her dogs she always said she wanted them put down if anything ever happened to her cause no1 would take as good care of em as she didthis is so hardshe thinks shes coming home n now the holidays r approching we can take her out as much n long as we want but what happenes when we have to bring her back this desease suxim sure ill have it someday as i get evthing my mom has please find a cure its so emotionally hard

    • Hi Lisa Kinney, Thank you for sharing your story. I'm sorry to hear about your mom. I lost my sister to Dementia in April 2011. She was diagnosed at age 52. I was her caregiver and the youngest in our family. She too had dogs. I kept them, now I live with my mom and she is 84. Well,we have a total of 5 dogs in this household now and I had to place my sister in a assisted living place for about 9 months before I brought her home with my mom and I. The assisted living did accept dogs and my sister would not have wanted it any other way. So keep your mom close as much as possible, love and care for her every minute of the day. Remember one day we will all pass, what keeps me going is knowing we ALL will be together again, IN GOD"S KINGDOM, we will all be perfect free of all pain and we will be perfect, no illness and no more ALZHEIMER'S OR DEMENTIA'S….

  15. Thank you for sharing. My Mom has Alzheimer’s and is in stage six. My Dad is the main caretaker, My sister and I assist him. Mother loves music and it seems to help her mood. Thank you again.

  16. Can it be possible to develop Alzheimer at the age of 49?

    • My husband was diagnosed with Alzheimer's at 49 after 2 years of taking him to various doctors to find out what was wrong with him. He is 57 now and is in late stage Alzheimer's where he needs help dressing, bathing, eating and is lost in our own house. I met a lady at a support group who was diagnosed with Alzheimer's in her early forties…hope this helps answer yout question!

      • It does, I am going through lost of test and next week I am going through an MRI. The doctor is hoping it is not Alzheimer. I thought I was too young to start showing signs since my older family members where in their 70's and 80's.

        • Unfortunately YES. My wife was diagnosed at 49. I noticed issues early 40's, but she would not believe me. It took a fellow worker to ask her about her memory, which started the 2 years of many tests and evaluations to confirm it was in fact, Early Onset. She is now 54 years old, stage 6-7. My Daughters and myself have been for the last 5-6 years juggling schedules between school and my work schedule to take care of her. From this point on, duplicate Linda's comment and you have our situation. As far as your MRI, well my wife had multiple and found nothing. However I might suggest you ask your doctor for a PET scan. Our 3rd Neurologist used this test to determine it was conclusive. I also read recently in AARP an article specifically naming the PET scan as a viable test. And i would like to point out something mentioned above regarding humor. I am a very positive person, always looking for a good side of the disease. And I agree in early stages, humor can work. However as stages progress, it will only cause confusion and anxiety. Short, sweet, and simple are my favorite approaches now. And most importantly as a care taker, PATIENCE. Hope this helps.

        • Slide back through the blogs to the July 15, 2011 blog regarding PET scans. After I posted a reply similar to Linda's description above, I read further and found many others confirming the PET scan was a useful tool for your doctor. Good Luck

    • My Mother has Alzheimers and has been in a facility for 6 years, during that time I have been told that people as young as 45 have been residents with this disease. I am under the impression that although it is primarily a disease of the elderly, Alzheimers does not discriminate.

    • My husband Jay was diagnosed in late 2006, 2 months after his 50th birthday. It took 3.5 years to get the diagnosis. He now lives in a residential facility because I am unable to provide a safe environment for him while working full time and caring for our 8 year old daughter. There are over 200,000 people in the US that have Alzheimer's under the age of 65. The MRI was inconclusive for my husband, it was diagnosed off the PET scan, however I am encouraged that there are better diagnosis techniques these days. It can be difficult to identify in the younger set. If, G*d forbid, that is it, I encourage you to get involved in the cause like Scott and my husband Jay. Working on behalf of those to follow us was incredibly empowering and healing. The Alzheimer's Association has many ideas for you. There is life after diagnosis.

    • Yes It can be diagnosied early with more advanced scans like PET scan. My father just passed away on Sept 10, 2011 at the age of 62 after battling this disease for over 12 years. He started declinning at age 48 and by 52 he was diagnosed by a nureologist. His siblings both were diagnosed at the age of 50. I attend Emory Universities ALz Research Program as there yougest subject at age 40 due to such a strong family history of Early onset Alz. they said it could affect someone as you as 35.

    • Yes, get tested as soon as possible. Medication is your only option with Alzheimer's. Don't be afraid of the diagnosis, be afraid of the diagnosis without medication. It has saved my life. I was diagnosed four years ago and speak publicly and do all I can to erase the stigma, raise funds, and find a cure.

      • What was the eiostuqn?Seriously, if you have a keen sense of humor, as your eiostuqn indicates, you don’t have Alzheimer’s! My mother suffered from Alzheimer’s for years until she died last year at the age of 93. One of the first signs of Alzheimer’s is a change in mood. The person become irritable about everything. Along with that comes intense worrying about everything. One thing after another causes stress. As we get older, our memories are not as keen as they once were, even our short term memories. That is perfectly normal. However, when we’re older, we tend to worry about it, and the worrying adds to our memory problems. If you want to be sure you’re 100% healthy, why not have a talk with your doctor? It will put your mind at ease so that the next time you forget where you put your keys, you won’t worry about it. Good luck!

    • Hi Cindy,

      My Mother began with Alzheimers Disease at age 49 and so it is indeed possible. My brother died last year at 78 and his mind was a sharp as a tac. I am now 75 and I show no signs of dementia. Quite the opposite. It is not necessarily a familial disease, so do not worry unneccessarily.

    • Cindy, my wife was 48 when I first started to notice something was wrong, at the time I had no idea that it was Alzheimers,nor did the doctors at Kaiser, it took them three years to figure it out, she'll be 55 next week and is in stage seven. They say the younger go faster ( maybe that's a blessing ) If you have any questions don't hesitate to contact me.
      Frank Andermahr

  17. Thank you for your inspiring story of hope. As I sit in the ER with my dad waiting to go to ICU it is encouraging to read your post. My dad is the third generation with Alzheimer's disease. My great grandmother was labeled mentally unstable and put in an institution. It wasn't until several years into my grandmother's illness that a name was given to her condition. Alzheimer's wasn't as well known back then. Since her diagnosis ALL twelve of her brothers and sisters have been diagnosed and passed away. She passed in 2007 and shortly after that her son, my dad started showing signs. He turned 68 this year and the disease is more advanced at this stage than his mom's was at 80. It seems to affect the next generation at an earlier age and it's progression is more rapid. I pray a cure can be found before the next generation can be affected. Keep sharing your story of hope!

  18. My mom died of complications associated with Alzheimer's in 1990 at the age of 76 years. I was her legal guardian for the last seven years of her life, and my two sisters and I tried to support her and come to grips with the progression of the disease. She was placed in a nursing home soon after being diagnosed. Dad divorced her after a short time and remarried. (He died of cancer in 1987). Family and friends did their best, but there was not a lot of understanding of the disease at that time. I admire so much the way you are handling this, Scott. God bless you and your family!

  19. Wow, I just read your blog and humor is our family, so we would be good at that part if get we past the frustration and arguing and my fear of what is going on.. My husbnd 57 memory lapses, word recall problems, forgets whole conversations, loses every thing. simple math and spelling. Refusing all banking and bill paying..Had a cat Scan and MRI Normal.. Diagnosed Psuedo dementia cause DEPRESSION and STRESS. just like some of you said. Well WE have had HIGH STRESS for a few years and him job loss and taking 2/3rd pay losses and pregnant teen due soon and family feud over a will on his side. SO yeah MAybe??? We'd never fight n front of the kids growing up but I lose it with him not understanding me or remembering what Im saying…On antidepressant now 4 weeks maybe 5 improvement. he smiles, he teased me, his tongue isnt knotted where its hard to talk as much. He did a job interview today. I never heard of depression doing this and yes, alzheimers runs in the family.. Can stress do this? any one? I have a great sense of humor and love to tease and joke.. aint there yet with this…

    • Heidi,
      have him evaluated by a neurologist.

    • Heidi, I just turned 60 and have been tested twice for Alz, with negative results thank God. However I cannot keep up with the mistakes that I make in a single day! This has been evolving for about 8 years now. My mother died with Alz. and my 64 year old sister in walking down the same path and it is extremely sad, and worrisome for me and my family. To me it is down right scary, as I sound a lot like your husband. Stress ? ABSOLUTELY !
      Thanks for you post regarding your situation.
      Carey

    • Sadly, I can atest to the fact that high levels of stress can have an affect on our mental functions. We lost a son in '09, and for fully one year, and lessening (gratefully!!) each year, my memory, focus, mental acuity were all affected. I joined an online grief support group, and without fail, that is one of the results everyone notes. My physician even warned me at the time that the brain chemicals do get 'scrambled' from such stress, and it's not a depression we can 'will' away by making ourselves 'un-depressed'. My physician did recommend a mild anti-depressant, and it allowed me to at least continue to function at work and in our family/friend relationships, but it was a long struggle. Kudos for sharing your distress and seeking assistance for your family. I'll be praying for all of you, Heidi! God Bless!

    • Heidi: I can feel your pain for I, too, am a caregiver of my husband age 77.We have been married 51 yrs. I am a member of the medical field. During my training Cancer was the #1 issue, in my mind I wondered what would be next. Now, I am experiencing that next disease first hand. Several of my husband's aunts/uncle plus his father had this dreaded disease. It is so good when we laugh-once in a while. God had to bring me to the point to realize that we could be dealing with some of the other dreaded diseases. Support groups are a tremendous help-just to know that there ae other people out there in the same situation I am in. When people ask "how are you?" My answer is "overwhelmed."
      They don't know what to say and quickly turn away. God will give us the ability to hang in there! Blessings!

  20. I took care of my grandfather in the 70's – as you say, little was known except "things were not right". Less than 2 years after my husband and I took an early retirement, he was diagnosed with early onset (at age 58). That was 3 1/2 yrs ago. It's a horrid disease which robs you from your dreams but there are worse things and if you look for what you can be thankful for it helps tremendously. I am a support leader and try to learn as much as I can to help or immediately family but also extended family and friends. A sense of humor helps but "it is what it is" and hopefully a cure can be found soon.

  21. Thanks for sharing your story. It's so important that people with Alzheimer's speak up and do not hide it, I agree wholeheartedly! My mother actively and anxiously tried to mask her disease in the early years of it, and I believe this contributed negatively to the impact on her and our family. If she had been more open about like you are, things might have been different. You are a true role model and I wish you all the very best.

  22. my husband passed away Jan. of this year of ALZ. related disease, he had the symptons for years, but was not diagnosed until a few years ago, looking back, I realize that was his moms problem, but she was not treated for it. Knowing what I know now, I could have handled things much differently. our daughter moved in with us to help care for him, he went thru the 'mean' stage where he would try to choke me and threaten to kill me, but never remembered that he did that. I spent nights of no sleep for fear he would attack me. it is a terrible disease, the caregivers carry the brunt of it because the patient doesn't realize anything is going on. God Bless all of the families, patients, caregivers.

  23. My father has alzheimer's and also suffered from severe depression. We have family history of both. We got him on wellbutrin, which helped him quit smoking also. and Trazadone. Trazadone is a miracle drug for folks who can't sleep, and it increases the appetite.We also started him on a good multivitamin, fish oil, vitamin d, a b complex with c,l carnitine, and namenda. he has had a 180 turnaround. his depression has lifted and he is remembering so much better. His sense of humor is superb- he is the happiest I've ever seen him. We just enjoyed watching the world series together- what a joy!

  24. God Bless you and your family Scott. My mother passed away in February after 8 years with AD. My dad cared for my mom at home, then visited her every day at the home he had to place her in when he could no longer care for her himself. Mom couldn't talk, but she could laugh and smile. And she did so till the end. Humor definitely made the days a litte brighter and easier to bear. I wish you and your family strength, courage, laughter, and peace as you continue on your journey. You are not alone.

  25. Scott, thank you for your insightful comments and for sharing your experience with Alzheimer’s. My dear husband, Tom, was diagnosed at age 64, just weeks after retiring. That was five years ago and, thankfully, he is still very functional and able to enjoy much of his life. I could not agree more that a sense of humor can get people through unimaginable sadness and fear. He loves to joke about meeting new people all the time…and happily watches the same movie or reads the same book over and over. His spirit is incredible though his memory is all but gone. As for me, I knew I had to have some creative outlet that would fulfill me as a person so that I could give him my best. I turned to writing, something I had not had time to pursue before retirement. It turns out that I am a poet, quite by surprise. I have published two books of poetry in the past 4 years, where my honest reflection on life’s challenges have lifted me and, according to feedback, touched many others. Alzheimer’s has not put a stop to loving, living and creating. We are learning to live for moments of joy, small flashes of perfection that strengthen us for the journey ahead.

    • Very well written Nancy! I am also Nancy. My mother Bernice is 86, and has had Alz for 10 years now. My step father at 92 just died, he was her caregiver at home. She is at the mid range of the disease, still quite funcional. Within one week of his passing, we moved mom into assisted living, in a different city than her home of 50 years. The change has really confused her, but with our sense of humor,she is doing great in every other sense of life. We visit her daily, and take her out for shopping and lunch quite often. We are also a creative family, and with writing, music and laughter, we are creating those moments of joy and perfection that strengthen our journey ahead. Thanks for sharing, and keep the faith!

      • Nancy, I'm sure we would find much in common. Thanks for taking the time to respond. I send warm wishes to you and your mother. How wonderful that she has stayed so strong for 10 years. Hope she has many more.

  26. I just placed my husband (age 66) in skilled nursing. He was diagnosed 4 years ago but of course symptoms were evident as far back as 10 or 12 years. He has been an angel and has the most wonderful humor!!!! Aside from the obvious "loss" if you will of my husband of 45 years, the most difficult part has been dealing with family members who are in denial. I agree with Betty and have said many times "it is what it is" but his Mother and sister still refuse to believe how truly serious the situation is. They seldom visit even though they have been told his time of any awareness of them is short. He barely knows us now. Our children and my best friends have been wonderful but I still feel very alone!!!!! Thank you for sharing your story. I do admire your courage!!!!! For the love of my sweet "pawpaw" I want to say "wake up people"!!!!!!

    • I just finished reading your sotry and I do understand what you were saying about people not believing what you say, I had that happen to me also but it is real. I have friends who don't understand much about Alzheimers disease but they listen to me and we do things together all of the time along with my family. I would really say that I am in remission if that is possible but I do still make mistakes. thank you for your story, Bernadette

  27. How wonderful it is to hear you speak out on this disease. My father passed from early onset AD last year. His experiences were probably similar to those that your father did. Peace to you and your family.

  28. Great and inspiring story. I'm 56 years old and was diagnosed 9 months ago. Should I get a second opinion? If there is nothing that can be done why another opinion?

  29. Thank you for your post. I lost both of my parents to Alzheimer's 11 years ago about 6 months apart. My mom was the worst as she suffered with it for several years, while my dad had it for only a few years before he passed away. My family were all caregivers at one time or another while my youngest sister lived with them until they no longer could be at home. We had some outside help with them as well and it helped ease some of the burden. I miss them both till this day and I have been part of the Alzheimer's study at the University of Wisconsin. I now have my mother in-law with the early signs of this terrible disease and we are trying to cope again with it. There are quite a few new resources that aare now available for those afflicted and for their caregivers. We were part of the Alzheimer's Memory Walk in our area for several years and we hosted a local golf tournament also for several years. I want to thanl all the people who donate money and their time to help eliminate this disease

  30. I think the love and laugh are the best cure for this terrified disease…My mum is 57 years old, she is an angel and I am with her in this shock brain journey …Sometimes she doesnt recognise me…and I try not to cry. Pray God helps and gives courage to me, to her and to everyone whose life is AD destroyed…

  31. Thank you so much for your insight into this terrible disease. My mother died 15 years ago from Alziheimers after 10 years of being diagnosed as dementia. My father had the hardest time accepting her illness but she bless her heart kept her sense of humor most of the time. After complaining one day that Dad was telling the same story again Mom patted my hand and said "it's okay dear I don't remember the first time". Her sense of humor kept her a popular patient in the Alzheimers home we eventually had to put her in. My oldest brother has the disease now and someday I may too but may we all keep our sense of humor.

  32. Thank you for this post. My father recently passed away at 66. He had early onset. I can definitely relate to the story you tell of your father. It was frustrating when my dad first began to exhibit signs because he seemed so normal at times that his memory loss was irritating. It's a terrible condition, and humor definitely helps to ease the frustrations, for the family members and the individual suffering from Alzheimer's. Many times, humor would interrupt some of my father's tears of frustration.

  33. Thank you for your courageous and insightful blog. I wish you all the best–what a wonderful family you must have. My grandmother lived for 20 year after her diagnosis. You are right — humor is a powerful weapon against this dreadful disease. You are to be admired~

  34. Scott – Thank you for sharing your experience with alzheimer's. My Mother suffered for years with alzheimer's. I was her caregiver for 7 years until she passed away in September 2010 with pneumonia. She had become a person who no longer knew me and spoke only of her life from many years ago. It was heartbreaking to watch – and, unfortunately, so difficult to know what to do for her. I was frightened and so saddened by her disease. I miss her everyday. I fear that I might follow in her footsteps. It is an awful disease and I pray that a cure will be found soon.

  35. I often say my Dad died from Alzheimer's, but he did not have it. My Mother had it, My Dad was so very much in love with my Mom, it absolutely broke his heart when she no longer knew who he was and would scream to the neighbors to call the police to get "that man" out of her home. It took a while, but I showed my Dad that we should "get into her world" rather than demand she stay in ours. It made it less stressful for him, but his heart was broken, he just couldn't understand how a woman that could memorize address' and other important info, could not remember her family. My Mom passed away the year after my Dad, never knowing she was a widow. Alzheimers is a mean disease.

  36. My mother had Alzheimer's for a long time before we realized it. I too wish we had known sooner, as we would have been more patient with her. It was so hard for her because she realized she could not do the things she had planned to do like write a book, work on her albums, write poems, etc. She was an avid Crossword puzzle aficionado but could not concentrate on them and could not even read, which she dearly loved. It is so hard to watch them decline–especially when they were so sharp and active before. I totally understand how you feel, and also then all of my family have the possibility of having it too. My mother's uncle had it also. It is totally scary. But I know God is in control and will take care of me and my family when, and if, that time comes.

  37. Thank you Scott for sharing your story – even though it is not an actual story but a life account of your journey. My father developed Alzheimers at age 58 and died when he was 63. At that time I joined a Alzheimers Caregiver Group and learned as much as possible, however, at that time it was not a disease that was well known. My father died in 1985 and it is my passion since I took an early retirement to help with the Alzheimers group in my area of Fayetteville, NC. I volunteer at Bethesda Health CareCenter where they have approximately 50 Alzheimers patients. I love being with the residents and providing activities that can help them stay more alert and keep some of the motor skills as long as possible. The Alzheimers Association web-site has been a great tool to better understand the disease and find activities for the residents. God bless you and we will be praying for you and your family.

  38. My husband was diagnosed five years ago at age 57. We too are very open about the disease. We want people to have a better awareness of Alzheimer's, and so we have shared our journey with classes at several local universities. We have found the young people to be extremely sensitive and caring about our situation. Because we are open, our friends call us often and we have a busy social life. They understand that our life has become different, and they embrace us. None of us knows what lies ahead, but we feel blessed today to have the support of a wonderful family, and kind, understanding friends.

  39. thank you for being so brave as to share your life. My husband was told four years ago he had alzheimers. He still has more good days then bad. He is still walking and finding his way home. I always tell him it is an adventure living with him now. Hmm I wonder where he put this? I wonder where he put that? He laughs because I usually do find it:) We have been together since I was fourteen and I am now 63 and he is 64. I know I am in for a long journey and thank God I have my sons. Bless you and your family as you continue on your adventure.

  40. My mom was diagnosed around age 60 with early onset Alzheimer's as well. Her mother also had it. I am 50, and I am terrified at the thought that I might have it one day too. Every time I can't remember something, I feel this overwhelming fear that it might be a sign of the dreaded disease. I can't imagine not knowing my husband and children. My mom is 70 now, and still knows each one of us, but is really beginning to show more signs of her illness. I can tell it is really scary for her, and I can't imagine how frustrating it must be. I pray they find a cure for this disease soon. My prayers are with every family that is faced with this.

  41. Thanks for sharing your story. My mother was diagnosed at the age of 58 and I don't think she ever really knew. My father took care of her for 18 years at home. I myself often wonder if I would want to know or not know.

  42. Scott, I appreciate you sharing your story! I will show my husband Mark, age 54 and diagnosed in 2009, your blog because he is experiencing the same feelings you spoke of. He had been in denial for a long, long time, and when he had come out of that, he was very depressed. He is doing much better now that he has one of two caregivers that come in the afternoons while I'm at work. They go on long walks, hikes and fun adventures, or will watch movies in rainy weather. He seems happier now, but becomes so angry when this disease shows its limitations on him. Our family has always had a great sense of humor and that is what is needed now in dealing with this disease. A good laugh heals the soul.

  43. Thank you so much for the comments on this most dreaded disease. We lost my father in 2008, and like your family, we too became frustrated with things that were happening. Today, I have a brother 66 years old afflicted with the same. I'm so happy you mentioned the part about having a sense of humor. Sometimes we forget this and instead tiptoe around – afraid of saying something that may hurt or offend. Since my brother has always had a sense of humor, I'm sure we can make things easier by bringing some humor into our daily lives. Thank you again for sharing.

  44. Scott, thank you for sharing your story and the commitment you have made to the ESAG. Thank you also to Amy and family who support you in order that you may continue this important work. I wish you strength in your journey.

  45. Way to go! I too have the diesase in the family third generation now a counting. My grandfather back in the 60s, then my mom in the 80s, and now my younger brother and sister 2010. Both just got on SS, which has lifted a burden from the family. I take care of my sis long distance with housing and paying her bills. My sisterinlaw takes care of my brother. The two get to gather and stays busy. I tell my sister with the two of them together because they are like two peas in a pod. They make a whole person. How true, what one doesn't know they other one does. They are okay now. I just worry later on when they will need more help. We are now looking at the next generation and where it will hit.

  46. I read all these stories with tears in my eyes. My mother was diagnosed with AD last year but the signs have also been there for a very long time. I treasure everyday like never in the past. I never knew there was a forum or place where people gathered to share and help others going through this awful disease voice their thoughts and also get inspired. I just turned 50 and I'm going back to school to get my degree in Family Therapy. I want to help as many people as God puts in my path better understand and cope with AD. It will be my goal to educate some of my family members that are in denial and make my mom's life as productive as possible through this ordeal. Thank you all for sharing your stories. As sad as they are, there is hope and a sense of community to know we are not alone. God Bless you all!

  47. Scott, Thank you for your heartfelt comments. I lost my husband of 36 years to early-onset AD last year. I agree, humor was definitely one of the things that helped us get through the rough times. I’d like to ask you a question. I’m writing a book and including contributions from family members and professionals on ways to cope with ALzheimer’s disease. It will include different modalities of healing (complementary medicine) and spiritual tools. I’d like to include your beautiful essay on humor. Please let me know if you are interested. Thank you so much, and blessings to you and your family.

    • Hi Barbara,
      Thank you foR your kind comments. Yes, please feel free to to use anything I have written, and would love to read your book when complete!

      Regards,
      Scott

  48. My name is Bernadette and I also have Alzheimers disease. I am doing well so far, am on two different medications and I take them every day. I am not happy about this but I do some joking about it with friends but I also get very upset with myself. I am living by myself in a small apartment and my oldest daughter and oldest son are living very close to me. My daughter does so much for me and is very patient with me when I ask her questions over and over again or tell her something like that. My friends know that I have this and they are very good with me and we do joke about it at times which does help me. Thank you for listening,

  49. mu husband also has early onset alzheimers. he is now 66 and was medically diagnosed in 2008. i beleive it started in 2005. he will not admit he has alzheimers and gets very upset if I try to discuss it with him. he knows he cant remember things, depends upon me for everything and he no longer drives, and believes it is just because of his age. I try to make light of it at times but he still denies he has alzheimers. any suggestions.

    • Hi Louise,
      I would suggest contacting your local Alz Chapter, as they may have some very good resources for you. They also may know of any local Caregiver Support groups that you could tap into. My personal opinion is that you can not force someone out of denial of anything. That denial can be rooted in many ways, and sometimes you need a professional to help you work through what might be best, as what works for one, does not necessarily work for another.
      Scott

  50. Scott: You could not have articulated this any better. Yours will be the face of the next generation–young or old onset–those who are struck with it–get the diagnosis–struggle–handle it with grace–and then ultimately enlist and have the full support of their families as a whole to move through this chapter with HUMOR!!! Bless you for sharing this. I am only sorry that your dad did not have the benefit of time and the understanding science has now. Helen Hudson

  51. Thanks Scott for sharing your story. My dad 88 yrs. old developed an acute onset back in February of this year. He had some teeth pulled and it seemed to throw him in severe dementia until I got him on an antidepressant and a sleeping aid. He does not really remember me most the time. I am his daughter. But he says that a whole yard full claim to be his daughter. There are 3 of us. :O) My mom that has been married to him for 72 years is struggling with the change. I tell them that we will not dwell with the past, but take things one day at a time, to not borrow trouble from the future. Just trying to be mindful of the moment and the good times we have left. My dad always stuffed things, BUT BOY NOW, we have real communication. He holds nothing back. In that way the disease is a mixed blessing! :O)

  52. Scott, as I told you when we met at the Support Group in Ridgefield, you are an inspiration. You are so brave to confront and speak about it. What courage! Son they will find a way of controlling the disease and perhaps then we can all have a great big laug of release. Let's HOPE that a cure or delay arrives soonest. Family are blessings and I know you are blessed. Keep doing and sharing. The best. Maria Victor-Smith

  53. Thanks for writing your story, My husband was diagnosed at age 52, and I am still caring for him at home, he is 59 now, will be 60 in 2 months. We do use humor every day, it relieves stress for both of us. Financially, it's been so very difficult, because who is prepared in early 50's for something of this magnitude. Hang in there, I'm so happy you have your sons for support.

  54. Thank you for sharing your story Scott. I wish you and your family well. It is heart warming to know that you have a wonderful support group. My father is 81 years old and my mother is 82. My father finally was diagnosed with dementia recently, however, it was coming on for about five years. He has changed a lot during the last year. It is sad for me to see how a focused man who was a genius about figuring out things mechanical and electrical, and was very interested in politics has lost interest in everything. His illness has given me a new direction and desire to learn as much as I can about this disease and be an effective member of this organization.

  55. Scott, my name is Patrick Pufall and I live in Appleton, Wisconsin. My 5 siblings and I watched our father die of Alzheimers at the age of 93. Dad was diagnosed at 88 and was active until 90. After 90 Dad went down hill very fast. So fast that Mom and Dad had to be separated due to Dad's mode swings. Watching my Dad and my Mom and brothers and sisters and I take turns helping with Dad and it was a labor of love. My Mom is nearing 93 now but does not have Alzheimers. As for me, I was diagnosed with Alzheimers in 2011 at the age of 56. I was devestated by the news but knew I was young enough to take the medicines. I have been fully cognizant of all things I need to do in my daily life but sometimes I forget things that need to be done. I can still drive – thank God. Oh and by the way, what keeps me going daily is conversations with my Lord and Savior. I reach out to him for help and guidance several times a day. I cannot get through the day without talking to God and his Son Jesus Christ. Some times he wakes me up so we can talk during the night.

  56. My husband has early onset Alzheimer’s, at age 55. He played football for college and some pro ball as well. High level executive. Now on disability. As this illness progressed we lost everything. He has heart trouble, which might have moved alzheimers into his 50’s. I work part time and I am his caregiver as well. I took care of his father as well till,
    he had to go into a home. It happened so fast all our heads are spinning. we are doing the meds but also natural.
    Being a trainer and nutrition specialist, I have lots of information rolling in from the integrative doctor and Nutritionist.
    WE are trying everything. Some things are promising. Exercise is very important of course and As I read your stories my heart goes out to you all. Love , Faith and Hope always…

  57. I'm 57 and have Alz. I tell everyone and embrace what I do have. I know latter it will get worse and hope I don't burden my loved ones. It's tought but I live for today, Bob H.

  58. Thank you so much for sharing your story..It gives those of us who are dealing with a loved one with Alzheimer's alot of hope to know we are not alone..My father who is 67yrs of age and in physically perfect health was diagnosed with this disease back in December of 2010..boy, what a trying time this has been for my mother, myself, and 3 other siblings..I could right a book of where we started with this(totally lost of where to start and what to do with our Dad) and how far we have come in providing the best quality of life for our Dad.We owe it all to our local Alzheimer's Association for taking the time to meet with us as a family and educating us on this cruel disease..God Bless you and your family. Will continue prayers for you and your loved ones.

  59. In October 2009 I left work driven by a friend to go to the hospital. I was diagnosed with diabetes and sent home. However, I did not feel that was the problem. Or at least the only problem. There was something wrong with my mind. I was tested by two psychologists about a year apart and they both gave me the diagnosis of dementia or alzheimer's. I am alone now. It is hard to live alone with this illness. I had to give up my car so no going anywhere. I have limited social security. Anyone who would like to email me please do.

  60. I've read all your stories with great interest and empathy for all. My husband was diagnosed 3 years ago, and seems to be stabilized (or is it just wishful thinking on my part) on Aricept and Namenda. Also Ritalin the last few months that seems to help keep him focused on little errands that I give him to do around the house without falling asleep. This diagnosis was so tough……he did all the financial stuff, not for just the immediate family, but often gave advice to others, especially little widows at church who thought the world of him. Now, he pays no attention to bills that are coming in……often carries no cash, and leaves all check writing to me……..doesn't even know where his checkbook is. I've run the emotional gamut, anger, denial, tears,frustration. But as many of you have said, "it is what it is".
    And last, but not least I find that friends seem to avoid us at church, and wow, does that hurt! The comment going through my mind these past few weeks is the phrase "Do Christians kill their wounded?" Thank you for listening, and may God Bless Us All!

  61. Scott, you enlightened me on the sense of humor, and laughter. My 77 yr. old husband Doug was diagnosed in June with Alzheimer's Disease. He loves to laugh, but often seems silly, and I find it hard to laugh . He says frequently "it's called a sense of humor". I will look at it in that light, even tho I don't always see the funny side. He has become very clingy of me, and so demonstrative, I feel smothered. But perhaps he is feeling fear–I will try harder to be there for him. Blogs such as yours are so encouraging. God Bless, Pat

  62. Scott, I was diagnosed four years ago, after caring for my father who was diagnosed at a young age, also. I, too, use humor to get through each day. If you didn't laugh, you spend all your time crying. I was on the Early Stage Advisory Group for the year 2010-2011. It was the most rewarding time for many reasons. I still speak and raise awareness every chance I get. I will continue to do so as along as I can. My goal is to rid the world of the stigma that follows this disease wherever it goes and whoever it touches. Let's all hope and pray that the NAPA bill will really make a difference.

  63. My sister was just diagnosed with alzheimers – she's 64. We got the news about the same time her husband was hospitalized with a brain tumor. We lost him last month, he was just shy of his 66th birthday. Fortunately, we have an incredible family and none of us will let these unexpected jolts derail us! I have often said, if you don't have a sense of humor, you've just got no sense at all! We share a real, sturdy love that's infused with laughter. I can already see the importance of just slowing down and sharing those moments of grace…or even frustration…with the strength of our connection. I just hope and pray for the wisdom and courage to face what comes next.

  64. Our family resorted to sense of humor, love, music, playing games, jokes during my father's Alzheimer's years. He had so much fun as well as we do. But sometimes, the distant look in his eyes was still there, though it didn't stop us from giving him the best times we could ever give during his life here. We still miss those times when that he has joined God for almost 3 years now. But we had videos and pictures of those times. Mr.Russell, God has allowed this thing to happen to you for a reason. You & your family, as well as all the caregivers in the world are one of his instruments in letting the world know what unconditional love truly is.

  65. I like you am in my 60's, Have Alzheimers except my neurologist hasent named it. I live with my mom, who has Alzheimers in Milford, CT.
    Gale

  66. Your story is touching Scott and you are doing the right thing by being open about it and therefore gaining the support and love of your family and close friends. You can appreciate even more a quality of life that many take for granted. Have the best holistic life that you can with all my love

  67. Thank you Scott for you comments my mother has Alzheimer;s and me and my father are taking care of her the best we can she is so depened on my father i have been thru it once with my grandmother sh had it for 5 years and passed away in Nov of 2007 she was a sweet person do anything for anyone and my mother is was the same way
    Debbiew Turner

  68. I feel like such a newbie here, with so much to learn. My partner of 31 years was diagnosed with Alzheimer's about two months ago. He is 58. We have shared this information with all of my family, his family and our friends, which I hope will make them more accepting and embracing. This is almost like "coming out" all over again.

    When he first started having memory issues, we attributed it to his ADD, which had only been diagnosed in 2006. However, with therapy and ADD medications, his memory did not seem to improve. It was a very frustrating five years of CT scans, MRIs, and neuropsych testing before he was finally diagnosed with Alzheimer's. So far, the diagnosis has been more of a relief–we now know what we are facing. and we are doing our best to face it together.

    A sense of humor definitely has helped us deal with the daily ups and downs of this terrible disease. Every day, I ask him his name, and then my name. He always comes up with crazy funny names before telling me the truth. Then, when he does tell me both names, I remind him that since he knows who he is and who I am, that today is a "gift day," and that we should enjoy it as best as we can.

    I know we have a long road ahead of us, with challenges for him as a person with Alzheimer's, and for me as his caregiver. I hope that the love that we have shared all these many years will endure not only as long as his memory, but beyond.

  69. Scott,Thank you for sharing your journey with us. My husband (80) has been diagnosed with Altzheimers 2 years ago, and from being a hugely successful attorney we had to close the practice down almost overnight, which left him feeling useless, but now we spend time together just enjoying this trip.
    He is unable to take any of the medications as he has a chronic heart condition.
    My daughters are so supportaive and I dont know how we would cope if it were not for their constant laughter and sense of humour, which as you said is vital.
    Godd bless you and your precious family as you continue your journey together.

  70. Scott great words of encouragement it is a tough challenge but with the help of my daughters as caregivers for my husband our faith in God and His strength will get us through this delima. God bless you and everyone going through this terrible disease.

  71. I lost my younger sister (62) to the disease and 6 weeks later my Mother, who was my sister's roomate, to the same disease. I try only to remember the silly, happy things that happened to us during the struggle. Humor does help and even though they did not understand everything, we all laughed together and that is precious. God bless you and your wonderful family.

  72. Oh my Scott!!! you have given me wonderful food for thought as well as the other replies have! I sometimes feel confused about how to handle my lovely husband. We can't seem to get him to understand that is is okay for others to know about his Alzheimer's. He was diagnosed 2 years ago at age 71, but in retrospect, I realize it started probably 3 years before that and I just filled in his blanks with realizing it at the time. We do laugh alot when we are alone, but with others he is happily silent. My mantra is "Do today! It's not tomorrow yet!!" since I never know from day to day what tomorrow will bring. my grief is immense, but this is God's way of preparing for "tomorrow"

  73. Never lose your sense of humor. That is what keeps my wife going and she has had the dreaded disease since 2002. For your sake and all others I pray that the U.S. Government can one day fund Alzheimer's research as it should be funded. $436 MILLION dollars for researching Alzheimer's is a lot of money but $8 BILLION dollars for AIDS research is way out of line compared to the drop in the bucket for Alzheimer's.

  74. I am awed about your honesty, your courage, you humor, and your commitment to your family. I have been diagnosed with mild cognitive impairment — a precursor to Alzheimer's. Nearly 60 years of age, it is hard to believe that there is an strong possibility I will be diagnosed with Alzheimer's. I am inspired with how you use humor to move through these challenges. Much appreciation for sharing your story.

  75. I feel so bad sometimes, until I read comments and realize someone has it worse than me. My husband was diagnosed in '08 at the age of one month shy of 71. His ability to communicate went first…mixing up words, him for her, or her for him. Months later he could say no words, could not communcate at all other than grunts. I wish he could speak, could rattle on over and over again about his past. This was a second marriage for both of us, married 5 years before his diagnosis and I really dont know about his earlier life. He is a good man, the disease went fast at first but has leveled out. But I am not stupid, I know it will be worse. But I am grateful for what we have. He is a good patient and I will do all I can until I cannot. Family is everything. I am alone here, but I have family up north who listen to me!
    You are a brave man with a beautiful loving family. I am so happy for you and your wonderful attitude.

  76. How do you get diagnosed? My maternal grandfather passed away in 1969 from a stroke, before which he showed what I now know were signs of Alzheimer's. Both my mother and her sister have it They were both diagnosed in 2000. My mom is still alive. My aunt died 2 years ago.

  77. Thank you Scott for your story. It brings tears to my eyes as I recall caring for my partner. Humor was a treasure in keeping our love alive minute to minute.

  78. Thank you for your story. It will help many families understand what this disease is all about. We are going through this with my mother-in-law and we were all lost at first on what was going on with mom. The sense of humor is important in life and someone with this disease. God bless you and your family!

  79. Thank you so much Scott. I have taken much the same attitude. I have had AD about 4yrs now. I am now 80yrs old. When we first suspected AD I suggested to my wife that we not tell our children until we knew for sure. She replied "No. We need their faith and prayers now." Our three children said, "Good night dad, are you just now finding that out ? We have known for some time now." One of my adult grandchildren recently told me, "Grandpa, it has always been fun to visit with you, but now that you are crazy, it is twice the fun." Some people, when they hear this, think that it is terrible. I love it. I was told that I could still drive, but that my wife would have to tell when and where to turn. Shucks, she has been doing that for the last fifty six years.

    One of my favorite quotes is by Abe Lincoln. ''Most people are just about as happy as they make up their mind to be."

  80. I, too, was a caregiver for my mother. She passed away three years ago at 81 from Alzheimer's related issues . I began noticing some of the problems she had in her early stages in myself. I have scheduled an appointment with a neurologist. As scary as this is for me, turning 65 next week, I do believe knowledge and education about this disease are paramount. Your strength and determination are an inspirational. You words will be helpful to me in my journey.

  81. God bless those who have Alzheimers and all their caregivers. My mom was diagnosed on 9/9/2008. She will be 89 next month. My grandmother and aunt died of Alzheimers. I originally was angry with my mom, but am trying hard to accept it. Humor always helps. My husband has been of immense help and two of my brothers.

  82. I am the wife of a man that has had Alzheimer's for perhaps 6 years now. I tried to keep him at home and take care of him by myself. He was given some medication that caused him not to stand, walk or turn over in bed. (I have been very bitter about this, as the Dr. didn't monitor the med at all and I think he felt like it was better for him just to die.) I really don't know much about AD and know that I should be finding out more. I hope through this site I will be able to help my husband, and help me to know what I need to know. I will be watching and reading things here from now on. Charles' family don't come to see him or inquire — It really hurts me – for him – that they don't play a part in his life. My children try to come when they can, but two of them live on the other side of the United States and the eldest of mine comes often to see him. We are the only two to be in his life. Any help that you can give to me I would appreciate.

    • Rose – You aren't alone! Please call the Association's 24/7 helpline. 1.800. 272.3900. We can help you find information and support.

    • I hope you find a good doctor to help you … and I know that is scary to try and take this on alone..I've been there. You know what you're not. If you need someone to talk to reply to me. I will listen and do my very best to help you. Call the helpline or read the site it has very good info. I am pretty much alone in this also. My husband's parents are both deceased. My parents care but they are older now themselves. Just let know if I can be of any help.

  83. Scott, you are cerainly an inspiration to many, and now to me. I have not found the humor in this diagnosis yet as my husband was diagnosed at age 59, three years ago. I recall one doctor saying that this is the most misdiagnosed and undiagnosed disease out there, we are living proof of that. We are trying very hard to cherish each day and make the most of what we have together. I pray that humor will come to us both, I know that it will make things easier. I am afraid of what our future holds even though I know we have no cotrol over it. I am praying for a cure and for the humor you so bravely possess. God bless you and your family and for all of us involved with this in our lives.

  84. Scott thanks for sharing about your life. Like you my husband (51) has EOAD (diagnosed 3 years ago). We have 2 adult children and an 8 year old daughter. It is actually good to hear from someone who is walking in our shoes. Our adult children are on their own but my little 8 year old is a trooper .. she sees the affect the disease is having on her dad an it confuses and at times can be troublesome to her. Like you he no longer drives and I have become his caregiver. Him being a retired veteran makes it hard to deal with on a daily basis … the career he loved has faded in the background and has left him pretty lost .. thank goodness he can still get outdoors. Walking and our cat have helped tremendously. I am still trying to help him deal with all the idle time. His career was his life…. no time for hobbies. Its hard to see someone with so much drive that has sacrificed so much … have to succumb to this disease … and see all his retirement aspirations fade. We will drive on … as we always do .. FIGHT the good FIGHT and in time we will win! Thanks again.

  85. Bless you Scott, my mother died of Alzheimer's in 1995 and I was her caregiver for about 10 years. She was 52 years old when she was diagnosed, her mother was 63 and my mothers sister was 63. I have 5 older brothers, and the youngest of the 5 was diagnosed about 3 years ago at the age of 62. I am now 56 years old and whenever I walk into a room and think "what did I come in here for " I get a little nervous, but I will not let it determine my outlook on life. I refuse to live my life on red alert!! I have a great family that will be there for me when and if I need them, and a really wonderful Doctor, that is fully aware of my family history. I have faith in all of these wonderful people. And a very strong faith in God, that whatever happens, we are blessed. Stay strong, live happy, and keep going.

    • I believe this is a ommocn fear among the children of Dementia parents. Because of this, I’ve decided *NOT* to have kids, so I don’t pass this gene on to future generations. My brother and step-sister are already grandparents. I’m just 42, but I’m Mom’s caregiver.

  86. Thank you Scott, and everyone who has posted. My mother is 57 and we are in the process of trying to get SOME kind of diagnosis. Of course, you want to hope that there is ANY other reason to explain the signs, but my grandmother was diagnosed in her early 70's ( though the signs were there long before then). I, like others, saw the signs for the last year or two, but I think I just wanted to believe it was just a sign of getting older and tried to down play what I was seeing. I, myself didn't take it seriuosly until my mother's coworkers took me aside and expressed their concern, since they were with her 8 hours a day, they saw alot more than I did. My father had a stroke over the summer, and I think after the stress of that and him trying to get on disability, it seems to have gotten a little worse. It's very scary to deal with and then comppound it with the thought that it appears to be occuring earlier with the generations. Bless all of you who are dealing with this disease, whether caregiver or patient. I pray for us all.

  87. I just wrote an article entitled, Alzheimer’s: Marriage Interrupted, that deals with the pressures of this diagnosis on a marriage ~ http://agoracosmopolitan.com/news/lifestyles/2011

    Good luck to you. I enjoyed reading your article very much.

  88. Thank you for your post. As you know, you are not alone. The burdens of AD are going to consume our society if they do not find a cure soon. As healthy as you are I would think you might try some of these antibodies that are in clinical development. I have heard of some very good results. They seem to have the best potential at this time. I would take them while you still have cognitive ability they may be able to preserve. Best of luck.

  89. I watched my mother deteriorate from Alzheimer's for almost 20 years. It was hell for her and for her loved ones. I wouldn't want to live the way she did, and she would have been appalled to know how she behaved and appeared to others. She was at first furious and paranoid, then furious and destructive, and then helpless–wandering around not knowing where she was going or who people were, and then unable to feed herself. I don't understand why, if it is in a person's advanced directives, that people who desire not to live that way, cannot be "put down" as we do, kindly, to our dying animals. For me, that's what I would wish, earlier than later.

  90. Your personal attitude and positive approach are truly inspiring! I lost my mom 7 years ago to early onset ALZ. She was officially diagnosed at 52 and passed on at 61. The doctor that made the diagnosis was astounded that any of her other medical professionals hadn't made the diagnosis 5 years sooner, when her brain didn't look like that of an unhealthy 85 year old. I'm frightened in that, at 44, I'm starting to display many of the symptoms that my mother did at the same age. Of course, knowing that I have 4 minor children ranging from 6 to 17, my doctors continue to provide the typical 'stress' diagnosis……….

  91. cont. …….
    and even with my mother's history still won't consider more intensive evaluations of my symptoms. I am hoping to find a medical professional that will take my symptoms serious enough to do the right set of evaluations to hopefully rule out the disease so I can at least be able to enjoy my children into their adult lives as you have with yours. I am encouraged by the article released by Newsmaxhealth.com on 11/28/2011 regarding the finalization of clinical trials on a new brain scan technique that can positively identify areas of the brain that are currently affected by beta amyloid plaques. Hopefully there is validity to this information and the tests will be available to folks like me who may have a genetic pre-disposition to the disease. Knowing, as early on as possible, can help those diagnosed to live fuller lives with what precious time may be left. Thank you for the work you do and for sharing your story. My prayers and blessings to you and your family over this holiday season and each and every moment of your lives !!

  92. What a wonderful tribute to your caregiver, Amy, who I met at the DC forum in April of this year. This was a very insightful piece, which I plan to share with my Early Stage group. Thanks for writing it.

  93. The Marsdale family’s traditions have always revolved around spending time with one another. While possessions come and go, the memories we’ve shared has been the most valuable and cherished gift. One thing that will always remain instilled in our mind is the life lessons and sayings our Poppy has told us: “Always look people in the eye and give a firm handshake, do what makes you happy, and it’s nice to be nice.” Now that his current residence is a nursing home as a result of Alzheimer’s, we want to use technology to our advantage and give Poppy one last trip. Through Skype and blogging, we will document every step of the way while giving him a chance to spend some time with our California cousins, take him to his favorite amusement parks, and allow him to enjoy the beautiful Golden State as he once did before. For one last vacation, his final memory that we want to give him before he passes. We want this to be a tribute to our Poppy as our way of thanking him for laying the groundwork of these life lessons that we have learned and will forever remember as we apply them to our future careers as filmmakers.

    This is our way of bring awareness to Alzheimer’s… This is our story. Please spread the word! Thanks!

    Love,
    Alyssa and Michael Marsdale
    https://www.facebook.com/forthememories

  94. What a beautiful commentary. Humor is the best medicine, for sure! That's why I take girl trips as often as possible, cuz for some reason, giggles always ensue! Scott, wanna go on my next girl trip with me? Our thoughts, prayers and smiles, are with you guys! Much love! Nancy..
    p.s.
    You failed to mention your dancing skills! You were certainly all smiles at Lindsay's wedding, and you certainly kept the dance floor alive!

  95. Scott, you are amazing. I've been wanting to connect with your since I saw the article in the Ridgefield Press in October. I have embraced the disease as a caregiver and daughter. My father is 92 with dementia / alzheimer's disease. With a staff that helps me I have kept him in his home even though there are times he does not recognize it as his home. It has been difficult for both of us. Based on things my father says, I think its the scarriest thing a person would ever experience.

    Its great and wonderful that your family is so supportive.

  96. Scott is my cousin and a truly remarkable man. He has always amazed me with his courage and vitality, even more so now. Amy is a sensitive and wonderful helpmate and equally remarkable. She has a busy career of her own and always finds time for Scott and the needs of others. I feel very blessed to be part of their family.

  97. I cannot express how touched I am by the story that expresses the bravery&love that u&ur family exhibit under these circumstances.I am a caregiver who has devoted my care,time,energy&love toward caring for the elderly who suffer from alzheimers and dementia.I have seen many families struggle to care for their loved ones without outside help,so i have made it my focus to care for the entire family.aside from 20+ in geriatric care, I also worked for many yrs. as a medical asst. for one of the best internist in the brewster n.y./danbury ct area which enables me to help families and physicians stay on the same page.I would be honored to be able to care for a family as brave as yours.I wish u &ur family all of the best&I thank u for sharing ur story.if u know of any families who need help,please feel free to contact me. Respectfully,pamela antonini 845-803-3312

  98. I have learned some essential things through your web website post. One other subject I would like to convey is that there are several games available and which are designed mainly for preschool age youngsters. They incorporate pattern acknowledgement, colors, creatures, and shapes. These generally focus on familiarization instead of memorization. This helps to keep small kids engaged without experiencing like they are studying. Thanks

  99. I in addition to my buddies came analyzing the good pointers found on your web blog and then suddenly I got an awful feeling I never expressed respect to the web site owner for those techniques. Those young men had been for this reason passionate to study all of them and now have undoubtedly been having fun with these things. I appreciate you for turning out to be very considerate and then for deciding on these kinds of superb issues millions of individuals are really eager to learn about. My very own honest regret for not saying thanks to sooner.

  100. I was diagnosed with Alzheimers several years ago and the disease has progressed slowly with medication, my problem is I don't understand what people are saying it sounds so strange, and I don't understand what the words mean, is this part of the disease?

  101. Dude, thanks for the inspiring piece. Way to go to you for being open and accepting and your family for being so supportive. And for having a good sense of humor.

  102. Scott
    I loved your story. I am now caring for my husband who now has Alzheimers as well as number of other problems. I make humor out of everything I can so can look at things in a different way and it keeps my husband happy. I am 68 and he is 87 and we have been together for 32 years. The Alzheimers was just diagnosed about six months ago but started out as early signs of dementia over a year ago. It is not easy but we are mananging so far without help. People want to help but most have their own lives and mean well but don't do anything. This is all new to me and I just go day by day one problem at a time. I got a lot out of your story!

  103. It's wonderful that you have a good support network of family in fact it is indeed a true blessing! Because my wife's family has failed to recognize the importance of those efforts and involvment, even while their own mother succumbed to the disease ten years ago now. The only conclusion to be drawn is that they are steeped in narcissism . The only thing I would take opposition to in your article, is your comment that you "embrace this disease" . By using the word "embrace" it suggests a sense of surrender, thus your mind-set in a mode of surrender may in fact trigger the progression of the disease in your physiological being as well. So, I say don't embrace anything that is clearly not of God but instead is evil and fight till there is no more fight within you.

  104. After some different efforts to deal with my issues, my neurologist diagnosed Alzheimer's. My mother had it but much later in life so I did not suspect it at first since I was not near the age she was (mid-50s vs. early 70s.) A plus is that my husband has a B.S. in nursing so understands my doctors, medicine, condition, etc. I am able to function fairly normally. I write a weekly article for the church bulletin, handle housekeeping chores, run 2-3 miles a day, etc. One suggestion I would have for the medical community is that when treating someone with Alzheimer's, please don't just tell them verbally your instructions, please write it all down and give it to them and/or their husband/son/daughter, etc., so they can follow it at home.

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