Sep 212012
 

 A Note from Michael: I would love to thank each one of you for the wonderful comments I received from my article.  As an advocate, it can be challenging to measure the ways in which my story is received by others. Seeing all of this positive feedback has given me a boost to continue writing and raising awareness for the millions of American’s affected by Alzheimer’s disease.

Since receiving my diagnosis, I have had the opportunity to speak with many individuals living with Alzheimer’s and other dementia.  I hope that my personal story has given others a new perspective on how to live with this disease, and connect with others.  Don’t give up! It takes time and patience to find the right connections and the best ways to cope with some of the challenges you may experience; however, the benefits are priceless. I am grateful for the opportunity to connect with so many of you through this blog. The acknowledgements and comments I received have inspired me to continue advocating as a person living with Alzheimer’s. Please join me and become an Alzheimer’s advocate. Join the National Alzheimer’s Advocate Network and make your voice heard. Thank you again.

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Alzheimer’s disease and other forms of dementia affect more than 35 million people worldwide today. An astonishing fact is that today someone in the world develops dementia every 4 seconds. By the middle of the century more than 115 million people will be affected by the disease if we do nothing.

My name is Michael Ellenbogen, and I am living with Alzheimer’s and trying to make a difference. I was previously a high-level manager in the telecommunication industry. In 2008, I was diagnosed with younger-onset Alzheimer’s disease (YOAD) after struggling to get a diagnosis since my first symptoms at age 39. Losing my job and not being able to work had a huge impact on my life as I was a workaholic. I am now an Alzheimer’s advocate and a spokesperson for the Alzheimer’s Association (US) as a member of its national 2012 Early-Stage Advisory Group.

I am so frustrated, because no one realizes how seriously disabled I am. If I had a loss of limb or some other visual ailment, it would make people realize. I don’t want them to feel sorry for me or pity me, I just want to be understood. So many people say you do not seem to have Alzheimer’s, and that frustrates me. Let me tell you what it’s like to live with this debilitating and progressive disease.

Imagine for one minute that your friend, relative or family member has Alzheimer’s and has to deal with the following issues. When I go shopping and look at items, most of them never really register in my mind, even though I see them clearly. I have trouble making decisions, because I question whether I am making the right one. I can no longer enjoy my favorite hobbies, because it requires processing skills that I no longer have. I went from being a gadget person, to being threatened by technology that I no longer can use. This is what I deal with and so much more.

I go to a happy affair only to be tortured by the noise and surrounding conversations, because of the loudness that cannot be filtered out. If people try to speak with me in a public setting where there are many other conversations, I just don’t understand what they are saying. This is because all of the people speaking come in at the same volume level. All the words run together, and it sounds like a foreign language.

I went from being extremely proactive to becoming much less active and motivated. I leave things around the house and don’t put them away, because I don’t know where they go or feel I may not know where to retrieve them again. One moment I am nice and another I may fly off the handle. I can no longer write or speak like I used to. My friends slowly become distant and usually speak to my wife. I do realize this.

I worry every day about the challenges ahead. Or even worse, I am losing my mind and see it happening, but I cannot do anything to change the course. People always say ‘if I can do anything just let me know.’ If I take them up on that offer, they back out of their commitments. I have become extremely surprised by the lack of public commitment to my pleas for support of Alzheimer’s disease. While some may be sympathetic in the moment, there appears to be little follow-through. This is very upsetting, because I feel as though it affects me personally as well as the millions of others living with the disease. I was always there for others when they needed it and now I feel alone.

While many people just coast through the day, I have to use 110% of my processing skills to do most things, which increases the stress and frustration. The worst part about this disease is knowing that  I am doing all these things wrong and have no way to control or stop it, and it’s only getting worse as the days go by. I used to save lots of money by doing so many things around the house. Now I have lost the drive, determination and skills needed to do those things. Many times I hurt myself trying or make things worse.

I cannot begin to explain how it tears me up inside to see my spouse struggling to do the things that I once was capable of doing and know I cannot do a thing to help. I realize that one day I may no longer be able to drive and this devastates me. I see my wife becoming stressed, depressed and overwhelmed, but caregivers know it will only continue to get worse. Sadly, they keep telling themselves that they can do it all even when we know they will need help.

I, the patient, see it definitely. My wife is on the road to hell, and she does not even realize it yet, because she is so busy trying to block it all out. The worst part about all this is, I have not even reached the worst stage.  That scares the hell out of me.

I have been so surprised by the stigma associated with this disease. It comes at you from all angles. People think they knew what Alzheimer’s is, but they don’t. I see this not only from people living with dementia but many media health correspondents, physicians and organizations that are geared to helping those deal with the disease. I have learned that I do not want to share my diagnosis with people I meet until they get to know me. If I was to tell them upfront, I would be treated so differently, which I have learned. I kind of see this disease like HIV used to be. The people who have it are so afraid to let others know, including family. I do not get it. We did nothing wrong to get this disease, and we need to speak up to let our voice be heard. We did nothing and no one should be ashamed of having it. I feel so much better when I share it with others than when I try to hide it.

Because of my frustration with the existing environment for people with dementia, I realized change was need. I decided to use my few skills left to advocate. I have spent some of my last few years being on television, radio, newspapers, many blogs and working with many politicians. I also had an opportunity to speak at all of the public sessions to develop the first U.S. National Alzheimer’s Plan. I did all this on my own. But that was not enough, because I ran into so many people who just did not want to get involved. I am now a volunteer for the national Alzheimer’s Association Early-Stage Advisory Group.  If there is something I want you to walk away with it’s that you can make a difference, but it will take persistence. Write a letter to your public official or reach out to local support organizations to create needed programs and services. Your voice and your story are powerful tools. Please get involved.

The simple truth is, if you have not been touched by this devastating and debilitating disease yet, consider yourself extremely lucky. Sadly, it’s just a matter of time before it touches you. It is my hope that my actions today may prevent future generations from suffering with this disease. So give yourself piece of mind and do something today. I hope that what I am doing will allow me to leave this world knowing that I did everything possible to make that next generation have a fighting chance. There are no excuses for not wanting to help. The human cost factor is too high, and we are all accountable to do something.

There are many organizations out there like ADI and the Alzheimer’s Association that can help you. The Alzheimer’s Association got me started in many ways with my new journey. It not only helped me, but it also had helped my wife as my caregiver. They have a website with many resources at www.alz.org. I encourage you to reach out today if you have not already. I would also encourage you to educate yourself.

Please join me and Go Purple on Friday, Sept. 21 for World Alzheimer’s Month. I wear a purple Alzheimer’s bracelet every day.  And for those living with Alzheimer’s, stop focusing on what you cannot do and join me in the battle to advocate. We still have so much to give, and we need to use our skills at our own speed. There is nothing to be ashamed of.  I, and your loved ones, are counting on all of you.

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About the Blog Author: Michael Ellenbogen is living with Alzheimer’s and trying to make a difference. Michael is also a member the Alzheimer’s Association 2012 National Early-Stage Advisory Group.

  67 Responses to “The Realities of Alzheimer’s and Overcoming Stigma”

  1. Thank you for your courage. It’s heartbreaking watching my grandfather struggle with this diseas, but I sure appreciate each day I still have with him. As a caregiver and a granddaughter. He’s 85 but hasn’t let poor memory or mobilization stop him yet. His motto is: I’ll just have to take it as it comes.

    • I DON'T KNOW YOUR GRANDFATHER BUT I LOVE HIM FOR HIS ATTITUDE. MY FATHER HAD THREE TYPES OF CANCER AND HE HAD THE SAME ATTITUDE. TAKE IT AS IT COMES AND ONE DAY AT A TIME. I HOPE I CAN LIVE UP TO THE GOOD EXAMPLE THAT WAS SET FOR ME. MAY GOD WALK EACH STEP WITH YOU AND YOUR GRANDFATHER.

  2. You hit the nail on the head- nobody knows what it is like. Ive had symptoms since my mid forties. Even family doesnt get it. Yhats why we have to be there for eachother.

    • Susan, you are right. Nobody knows and it is good to hear it from the person who has it. My husband won't talk about it just says "Why don't I remember names of places or things" It is soooooooo hard for both patient and caregiver.

    • I feel your pain, Susan. I have a wonderful family and I am very, very fortunate that they seem to pretty much “get it” but we don’t talk about it. It’s too painful for them. I am in the early stages but I feel like I am losing the battle more quickly these days. My only happiness is knowing that even though my mother suffers from very late stage Alzheimer’s — I am the youngest child of six kids and all my older siblings are symptom free! Hoooray! This means that my children have a pretty good chance of never having this disease. My husband is older than me as well, and sharp as a tack! So, that’s good for my boys, too! I’m just terribly sad that my loving husband of 32 years must endure the road ahead. He’s my hero.

  3. My mother lived with me for 6 years. I closed my business and became her full time caregiver for the last 4 years. She passed away from Alzheimer's on July 20th, at home, holding my hand. I'm struggling with what to do with myself now. My heart is for other caregivers. This is a horrible and devastating disease and affects everyone that comes in contact with it. Michael, please continue to speak out and blog and document what it is like for someone with Alzheimer's, from your point of view. Those of us who care for you have to guess at what is going on, what you are feeling, what you are hearing, why you are reacting the way that you do. Thank you for your boldness, your honesty, and your determination to make a difference in attacking this disease. May God bless you and your family.

  4. He’s so right I was a caretaker in a alzheimers unit and this disease is one of the saddest I hate to say that but it is so sad. A friend of mine has both parents with it I can’t imagine the fear she must have. It certainly has changed the whole family’s lives because it does involve everyone.

  5. Today we wore purple, my husband was diagnosed 4 years ago. His situation very similar to yours and mine to your wife, thank you for sharing from his point of view…

  6. Thank you so much for posting this your Blog!!! Your story of dealing with having Alzheimer disease yourself helps many of us to see it from your side. My husband also had this disease but began having small strokes and then had a major one that put him in a coma for last two months of his life. We had helped care for his Mother who also had the disease. At the time the stigma of the word Alzheimers was not understood nor accepted by families. I am so glad it has finally been seen as a disease that affects people from every walk of life regardless. I pray everyday for a cure and help all I can. I hope you can continue your blog. Again, thank you for sharing. You will be in my thoughts and prayers!!

  7. Thank you for speaking up. I am an Alzheimer's widow of younger onset Alzheimers. My husband hid his symptoms so long that we were in dire straits before his diagnosis. Strangely your comments gave me comfort as he was unable to communicate his feelings once diagnosed. Understanding some of what he personally felt is helpful. God bless your wife and family and I hope they find the support and strength to assist you in your journey. My prayers are with you.

  8. I am the caregiver for my mother and reading about this from your perspective helps me to understand some of what is frustrating to her. Thank you so much for being an advocate and for helping me to understand a little better what is going on in her mind.

  9. Michael, you are an amazing person for doing all you can for people dealing with this terrible disease. My elderly mother has Alzheimer’s Disease and it is so heart breaking. She is scared ever moment of every day. I try to put myself in her place so I can respond in a caring and understanding way. It is so hard to know exactly what she is going through.

    I have collected money, given money, written my congressman and try to spread the word that we all need to help in any way we can.

    Thank you for helping spread the word about Alzheimer’s Disease. May God bless you and your family

  10. Well said. My husband was diagnosed in 2010 at age 61. I see him slipping away. Others try to understand but don't, even our dearest friends. Keep being the great advocate that you are.

  11. I wish I had some great words of wisdom. My husband at 55 was diagnosed with Picks dementia and this has been devastating
    for us. As the care giver i try to be such a happy, optimistic person but inside my heart is breaking. My mother is in the final stages of Alzheimer's so i know what is ahead. I am glad to hear you say everything out loud that he just tells me. People need to be a little more cautious with their words You seem fine to me" I want to scream when someone says that to him. He is crumbling before my eyes. He tries to put on a good front. Take care

  12. My mother died Easter after dealing with this terrible disease for years, and I too have been diagnosed with this same disease at age 52. I now see both sides, and I understand the fear you described. To me there is nothing more daunting than knowing what this will do to my family in the future. Thank you so much for giving a voice to those who no longer have one. I will continue to donate to the Alzheimer's organization, and try to educate those around me about the effects of this disease.

  13. good luck to you as you battle this dreaded disease; my parents went thru it and know it was a difficult battle!

  14. I agree and I’m scared to death. I have watched my great grandmother, grandmother and now mother deteriorate from this disease and its heartbreaking. I’m sure I have early onset but due to other health issues I cannot work and have no insurance to be evaluated. Luckily my mom is on aricept.

  15. Thank you for posting this, Michael. My heart is with you. I wish I could change your course for you. I am glad you are using the time and abilities that you have at presently to push for a difference and to help others understand what toll this disease takes. It is a heart breaker of a disease and i can imagine very frightening much of the time to be aware that you are losing capabilities cognitively, but one day at a time and never stop doing what you know you are capable of. I pray they stop this cruel disease in its tracks, and soon. I am behind you and the organization and think no one should be ashamed of being impacted by this disease, but you are right, there is a stigma. I lost my father to Alz. in December of this year and it was devastating to watch him go through it. I will keep you in our prayers. Keep up the good fight.

  16. Michael,
    I am amazed that you were able to articulate the things you are feeling so well. My wife also has early onset AD and no longer drives, socializes or does much of anything without me being there to assist. I know she must be feeling many of the things you wrote about, but it was still helpful for me to hear your feelings from the side of the Alzheimer's sufferer rather than making assumptions as a caregiver. Thank you!
    Jim

  17. Like Michael, I also have what is considered early stage Alzheimer’s Disease and like him, I have been forthcoming about my diagnosis. I am a research subject at UCSF and I attend tAlzheimer’s Association early stage support group meetings. Our Senior Access ADHC now offers special outings for us, i.e., a Zen Center for it’s lovely gardens, museums, the Chabot Science Center in Berkeley, and other sitess.

    Fortunately, my speech remains the same, and I clearly look the same. As with Michael, people say that I look just fine. And also like Michael, I also gave up a career that I truly enjoyed, and I gave up driving. However, I am remaining active physically and mentally. I’ve joined a walking group, I have" jigsaw puzzle parties" that clearly challenge the Alzheimer’s brain! We eat pizza, work on the puzzle and laugh.

    None of this could be accomplished without the support of family and friends. Like Michael, I am willing to speak at Alzheimer’s Walks, on TV, or be interviewed for a newspaper article on the disease. Hopefully, people will realize there is still life after the diagnosis. Best wishes to all who read this!

    • You are SO BRAVE Katheen. i am finally finding individuals who understand what I am going through. I have felt very, very alone in my struggle. Mostly my own fault. I have hidden my early stage or early onset disease Alzhieimer's Disease (I can't remember which it is) Alzheimer's disease for many years now. I am only 54 years old and I refused to accept the diagnosis. I've been so very lucky in my life. I have a wonderful husband of 32 years, reallly terrific grown children, fabulous family and friends and yet I have chosen to hide my disease as best I can. I had a really great job that I absolutely loved. My duties grew quickly and I became resale marketing director. Then I added direct sales and in retrospect that addition proved to be a fatal mistake for my career. I don't know why I accepted the added duties. I guess I wanted to prove to myself that I could BEAT this horrible disease. I was wrong.

  18. Michael, just wanted to let you know how much I admire your personal courage and persistence in trying to help others begin to understand just how frustrating and cruel A.D. can be. Over the past 20-years I have seen this disease slowly and progressively torment those in my own family beginning with my grandmother, an aunt, mother, and most recently, as a caregiver for my father-in-law. Thank you for sharing your daily struggles in your own words, as a benefit to family members coping with, and to help others acknowledge the urgency and difficulty of the task we face.

  19. Michael – I am impressed by your courage! I have a good friend who has early onset Alzheimers and is denying it in spite of the diagnosis from several doctors. His wife is my good friend and I ache with the frustration of knowing how to help both of them. Your article helped me see it from the viewpoint of the person with this awful disease. Thank you for that perspective. God bless you and help you and your loved ones through this journey. Judy

  20. Thank you so much for writing what it's like day in and day out to have Alzheimer's,especially from your point of view, having it happen while you are so young. One too often thinks of it as just an "old timer's problem". It is not, as you have pointed out. Best of luck, and love –

  21. My wife was diagnosed with Alzheimer's five years ago, at age 47. They pulled her driver's license immediately. So, I’m surprised that you still have yours. We had to sell her bus charter business and I had to retire early from a job that I loved.
    I see, in my wife, all that you are going through, plus she can no longer read, write, sign her name (or even spell it) nor bath or dress herself. She keeps me extremely busy and it is awful watching her slowly waste away.
    Thank you!

  22. Thank you for lending insight into this disease. Appreciate it.

  23. Michael, Like you, My husband who is now 53 has early onset Alzheimer's disease. Your message eloquently and so similarly describes what he and I have been experiencing since learning of his diagnosis. Like you, he has begun to advocate for early onset or younger onset Alzheimer's awareness to bring this devastating illness to the public's light and recognition. Please know that you and your wife are not alone, although there I times when I'm sure that you do. My husband and I stand with you in all that you are experiencing now and the things you anxiously anticipate as your situation continues. Our prayers and thoughts go out to the both of you for your courage in sharing your story and for facing an uncertain future. Smiles, laughter, courage, strength, hope and God's infinite grace are what I wish for you and your family.

  24. Just read your post and I am sooooooo sorry for what you are going through. I know you don't wan't pity. I also feel bad for your wife and family. My husband was officially diagnosed a year and a half ago. He is 67 but a young 67. I am 64 but again I say a young 64. We had lived our life with no health problems until I had a heart attack at 61. I had stents and was very lucky. After that I told him now we have to enjoy our lives because no one knows what will happen. I made him go get a physical which neither him or I ever had. Well he had prostate cancer and surgery. Then diagnsed with Alz 2 years ago. I thought we could be happy in our later years but guess not. I am pissed off and scared. Please keep me in your prayers as I will you. Sometimes life sucks.

  25. Thank-you, Michael for sharing your heart and your story. My husband has Alzheimer now for 4 yrs…..very hard to see my strong husband of 41 yrs who once was a lineman for the electric company for over 30 yrs and my handy man who now depends on me completely to keep everything in our world running. I depend on God’s help each day to give me strength and patient to get through the day…..it’s very hard and frustrating when you spend so much time explaining and showing him the simple things in life how to do it. Your letter will help me share to my family what it’s like for Denny and what I go through….pray soon there will be a cure….blessings to you and your wife….. keep trusting and believing that you are not a lone….Sharon

  26. Thank you Michael for sharing your story, you are doing a fantastic job being an advocate for Alzheimer's while living with this horrible disease.
    I will be sharing your story on my FB page.
    I sadly lost both my parents last year within six months of each other, they both had Alzheimer's/Dementia.
    I now am an advocate, a member of Alzheimer's Australia, a member of their consumer advisory groups and I volunteer at a day respite cottage using my Montessori rehabilitative skills for dementia.
    Thinking of you
    Kind regards
    Jennifer

  27. Thank you for sharing your story. My husband is also diagnosed with YOAD. It is devastating and overwhelming. I know that the journey ahead of me will be challenging. My family are very supportive, however it's the day to day that can be so challenging because as a caregiver, I also the sole provider of the family now. You gave me an insight though as to what goes on your mind as a patient and the struggles you go through. I see that with my husband when he is frustrated and gets anxious. God Bless you and hope that the Research for cure for Alzheimers will come soon.

  28. I am 56, my mom has been diagnosed with Alzheimer's last year. They have been married 60 years. My mom has always been the one to grocery shop, clean and take care of my father. It is a beautiful vision to see my dad taking over and doing all those things now for her. He is patient, kind, and wonderful. He takes my mom for rides everyday or night.
    I am so blessed to be watching, "in sickness and in health" the true vows in action. Few are blessed to see these actions. They are glued together. They are very much in love.

    When I see her, she is as sweet as can be. As humans we think we are in control of our lives and everything, when, in fact, there is someone much bigger, stronger God, that has everyone in the palm of his hand. We have so much false pride and losing our memory and being dependent on others, for some reason is the worse thing people can imagine.
    In fact, it is the way the Lord planned it, and for a reason. We are here to serve one another.
    Losing my mom slowly, even though she is still alive, is very difficult, but, I am adjusting.

    God Bless you for your work!

  29. I am a caregiver for my husband. He was also diagnosed in 2008 at the age of 53. Thus article was really helpful for me to better understand what he deals with on a daily basis. It can be very frustrating as a caregiver but after reading this, I was brought to tears. I will definitely be more understanding when he behaves differently in certain situations. Me blessings to all who suffer with this dreadful disease.

  30. I feel your pain Michael. I was the sole caretaker for my grandmother for 6 years. I watched her go from being my best friend to someone she didn't know and was confused and frustrated. I spent many sleepless nights trying to protect her from harming herself and me and my father. I am a strong advocate for Alzheimer's. If I could I would love to work for the organization. Most of the time people think that if someone has an illness and it's not visible then it doesn't exist. I now have depression and anxiety from that experience. It's like post traumatic stress disorder. I keep reliving what I had to go through without an ounce of help from anyone in my family. Even her own children didn't want to come near her because they "couldn't handle it". So the left me in charge of her care. I lost friends and had to put my life on hold until it eventually took her life at age 85. She was diagnosed at age 79. I still have flashbacks of what happened on some of the scary situations but try to remember the great times we had being with each other. If it taught me one thing it was patience. I had to be patient with her and with myself. It wasn't her fault and didn't blame her one bit. If I had to do it again I would because when you love someone you stand by them no matter what. I will keep you in my prayers for a cure. Take care and Peace and love to your family…..Kathy

  31. My husband is 52 and was diagnosed at 48. He was also a very successful person. He was a retired Army officer and a contractor. Your article was like describing our life. Would love to talk with you and your wife via email. We also have a daughter 9. Thanks for a great article.

  32. Thank you for writing your story and for taking on this cause. I am a widow who works full time and takes care of my mom who has vascular dementia. There are days when I don't know how much longer I can do this. It's been 3 years now. But there are no choices. And there are days I hate myself for not being more patient with my mom. I read your story and I know I am not alone.

  33. Michael, I'm so thankful I received your story when I opened my Alzheimer's enews. Dad died a few months ago at age 92 after suffering for six short years, which seemed like an eternity. We were so wrapped up in him & other elders, especially the past 2 years, as well as his last 3 months in a Memory Care home. Last week's Walk to End Alzheimer's was bittersweet, having lost his battle. Yet reading your story gives me new perspective on this horrible disease. I salute you & your efforts. To be diagnosed at age 39 was a shock to me, to the point that I have not only my age group as "the next generation" of victims, but as your article so eloquently stated, Alzheimer's is claiming victims earlier in life. To hear your day-to-day struggles and knowing the worst is yet to come is an eye opener. Thank you for sharing your story, as well as affirming my commitment to the Alzheimer's Association.

  34. Thank you for having the courage to speak out and let people see the disease through your eyes. The information is invaluable to helping people get a clue as to what it must be like for patients and caregivers. I am watching my once capable father suffer through the stages of this disease and my mother traveling this road to hell with him…it is devastating!

  35. Oh, thank you, Michael for this article. My husband was diagnosed with Early Onset Alzheimer's in October, 2011 at age 58. It is devastating. My mother died of the disease and I am a co-facilitator for a support group. But it is all different when it's even closer. I'm printing this for my husband to read and am going to forward this to all my friends! Thank you, again!

  36. So brave; thank you, Michael for sharing.

  37. Thank you for describing what A/D is like from your perspective. As a social worker, I work with individuals who have more advanced disease and often cannot verbalize their thoughts. I am especially saddened by your inability to speak in a crowd or noisy situations. You are so descriptive it makes it easier to understand another aspect of a persons inability to communicate. Simple things like being in a dining room trying to order food and getting "stuck". I am one of the trainers for our staff and I will pass this on. Thank you for not giving in to your saddness and frustration. YOU ARE MAKING A DIFFERENCE and you are an amazing man! For that I thank you and my residents thank you! God Bless you and your wife!

  38. I am feeling an incredible sense of relief after reading the article by Michael Ellenbogen. I was beginning to think that I was the only living soul who is under the age of 55 and experiencing these problems and feelings every day. It took me years before I could admit to the slow, agonizing demise of my beloved brain. I don’t feel as alone, embarrassed or ashamed today as I usually do. Thank you so very much, Michael for having the strength to help everyone understand what this feels like. God bless you from the bottom of my heart.
    Sincerely,Starr Maskal

  39. Bravo!! Now I know how my mom felt when she developed Early On-Set Alzheimer's. I have went to different classes regarding Alz when she was diagnosed and read all the time on the Alzheimer's website but you explained it so much better than i have heard before. I appreciate it so much!! Thank you, Michael for telling your story and doing everything you are doing. I am an advocate for Alzheimer's and proud of it!!

  40. Michael, I hope you are keeping a daily journal. Most caregivers understand but those who have never been long term caregivers will never understand what you are going through and what it is like to be effected by this horrible disease. I cannot find any studies of communication understanding with caregivers with the exception of saying that they feel happy, sad, confused, fear, ashamed and much more. But there is nothing out there to let people know on a daily basis how you as an Alz patient feels. What is your story. I believe that they know inside what they want to communicate but just cannot get it out…and the get frustrated because if that. Please keep a journal and when you can no longer keep it, let your wife keep it. Perhaps some day, it can be published to help others. I do hope your wife will never let you go into a nursing home.

  41. When I became so stressed with the caregiving experience, I agreed to put mom in a nursing home that was the biggest mistake of all. My son now has guardianship and mom is in a much below average nursing home and they have mom on "behavior meds" not FDA approved for her condition. Due to the behavior meds and treatment in the nursing home, she became incontenent in my opinnion before it's time, seems much worse than she really has to because she is so drugged up most of the time. She was even put back on Seroquel which in conjunction with 2 other meds helped stop her heart for 3.12 seconds…and my son allowed them to do that. After 5 weeks when seroquel didn't work, the took my 85 year old mother off it cold turkey. She went through withdrawals. I was so upset that my son now prohibits me from knowing what medication she is on.

  42. Please, if you really care for an Alz patient, make time now before it falls so previlently upon you to learn, volunteer with those in nursing homes, volunteer with caregivers to give them a break….try to do it once a week or at least once a month for a day or for a weekend. Try hard to not criticize the caregiver as they have probably worked hard to get in a routine that works for their household. Try to give helpful suggestions by writing them down in a kind supporting way and providing them in a letter. If they want to discuss them, they will call you. Your caregiver will be forever grateful.

  43. Thank you, Michael. My husband is 60, was diagnosed at 58 and has rapidly progressing symptoms. He has spent the last 2 years trying to hide what is happening. We live in a different state from his family and he refuses to tell them of his diagnosis because he is so embarrassed by his loss of abilities. He thinks of himself as a "dummy." I am going to have him read your letter and see if it can help him accept that he is not alone, that this is a disease and not a personal weakness, and that not only is it OK to let others know about the diagnosis but that we need to be together in fighting this awful disease.

  44. Michael, thank you so much for your courage in speaking out for those who don’t have a voice. My mom also had early-onset Alzheimer’s and I could see and feel the daily struggle she had to retain her individuality while still being strong for her family–that’s just the kind of person she was. Up until she went to the hospital and then a rehab center for the last few months of her life, my sister and I lived with her and my dad to help take care of her (and him), and also to be near her as much as possible. Sometimes I look back and wish I had done more. Everyone was so busy trying to be strong for each other that we never stopped to share our feelings with each other. We tried to act as though everything was normal. We didn’t want to let down our positive and optimistic facade for fear of upsetting my mom, so we often isolated ourselves to grieve in private. Now I think that, in doing so, we forced my mom to suffer in silence, too, thinking she, too, had to be strong for us. Now that’s it’s been over two years since she passed, I often think we should have handled the situation differently–as a unit who is in it together. My mom couldn’t really put words to her thoughts/feelings for the last year or so of her life, but I would have cherished the hugs that I still yearn for today. Your blog is great encouragement to people to share their feelings with their loved ones, and allow their loved ones to share their feelings with them. And while that won’t cure the disease or stop it in its tracks, it can bring families and friends closer, help them understand each other, and allow them to grieve together. And that is such an important part of going through something like this. It’s too little too late for me to have learned this, so I hope your readers and supporters take heed of your words and start opening up and sharing while they can. We’re all in this together…. I wish you all the best, Michael. Thank you for sharing your voice for people like my mom who wasn’t able to.

  45. Dear Michael,
    Thank you so very much for the insight you gave me regarding this so very common disease. My Dad lost his battle with ALZ in April. . When he was first diagnosed at age 80 I went to a seminar at my local library about ALZ. One thing that really stuck with me is that Alzheimers Patients do not lose their intelligence (Yes, really…) and their emotions. I always made a point to tell him how much he was loved and what a great Dad he was. I also really LISTENED to what he was saying. He was confused but guess what…still very intelligent. Also, one thing I noticed was he always responded when I told him how good he looked. This info. is not to give myself a pat on the back but so that maybe someone else will pick up a little bit to offer the ALZ patient(s) in their lives. Michael, thanks for being so open. I wish you the best. Oh yeah, one more thing…I have a double copy of the APOE4 gene in my DNA. It doesn't bode well for me for the future but the info is helping me make some decisions I need to make now. I have a 47% chance of starting ALZ in my 60s. Will take it as it comes. Best to you Michael. Chris

  46. I have just started researching Alzheimers and Michael's article has inspired me to continue to find out why my brain feels so different with functioning these days. (I've just turned 60) When Michael talked about his symptoms with the voices and the loudness and the not putting things away, plus the frustration with technology……..wow……..that's what I go through, and I really want to find the courage to find a Dr who will diagnose if I'm in the early stages. I felt like there was hope after this article, and I certainly would work at helping others too. PLEASE give me the courage….someone!!

    • Janelle, I had just responded to Michael's wonderful contribution when I saw your entry. PLEASE take the courage into your own hands and write. It helps so much. I'm a care-giver and believe me, there is nothing as valuable and as valued as an inside perspective to this condition.

      In terms of care giving, this is, for me much more than the practical assistance I give my Mother, it is about finding a respectful, considerate and authentic way to adjust to the changes myself and to believe that my Mother has the best quality of life at every level, mental and physical. I'm pretty spun out from Clinical opinions Janelle, they are very cold so I hope you can find the bravery and courage to write your reality because that is what is needed and wanted so very much by people like me, my family and people affected by this condition. I'll be watching in anticipation. Sincerely, Mary.

  47. Hi Michael, I can totally relate to this great article you have written. My 82 year old father has alzheimer's. We started noticing signs in 2003. He has been living in a wonderful private adult foster home now for almost 3 years. I am the oldest daughter with one younger sister. I commute 7 days a week to visit with my dad and take him out for a couple of hours for a drive and ice-cream. He looks forward to my daily visits and it keeps him connected. It has sadly been my observation that family and old time friends tend to not come around any more. It is quite disturbing, however I cannot change other people. I feel blessed with this time with him and would never abandon him like the others. It would be great if more people would educate themselves on this devastating disease and take time to understand. Yes, it is very isolating both for the person and the caregiver. I just do my very best and know that I am making a difference in dad's life. The others who prefer to turn the other direction and no longer visit, well, that is on them. One day it could be any one of us and that is the part they do not get. I cannot make other people " get it " right now for me all that matters is I get it. I would never turn my back on my dad just for the fact he has alzheimer's. Thank You for letting me share! Best of luck to you and your pursuits as an advocate for this disease. I truly respect that.

  48. Thanks for a well written article describing what it is like for people with Alzheimer's. I will use it to explain the desease to others. I definitely helps me as a care giver and encourages me to do more for my husband.

  49. What a wonderful article!!! My mother passed away almost a year ago at the age of 60 from what they referred to as FTD. She went from being a pharmacy tech to being unemployed in about a 2 or 3 month time frame. She struggled to count pills or make change and then she struggled to find words to describe things or to spell things correctly. My mother had always been a perfectionist, so we noticed fairly early in the illness. Unfortunately we thought we would have a slow progression of this awful disease, but we only had a couple of years and she struggled greatly the last year of her life. My father became the primary caregiver and we helped when able, not an easy job…So hope that you are keeping a journal of what is going on in your life…Wish that more people understood and didn't shy away from the words alone….Keep going and my thoughts are with you and your family…

  50. This is inspiring story! stand up for Alzheimer’s today help us find a cure to Alzheimer’s

  51. My husband was diagnosed with EOAD two years ago at 51. We have up until this point kept our heads in the sand and were reluctant to learn more about it out of fear. I have just read the book 'Still Alice' by Lisa Genova which is written from the perspective of the person with Alzheimers. This book has changed my entire outlook on what I thought I knew. I thought that I was understanding what he was going through…boy was I wrong!! I have so much more empathy and will treat this 'journey' of ours as a precious gift together instead of just muddling through a disease. I can't wait for him to wake up in the morning and hug him and tell him he really isn't alone. This is a very powerful MUST read.

  52. Michael, A lot of what you wrote I have heard you say many times before at other venues. It is so great knowing you and your wife. I know we are on this Alzheimer's journey together with our spouses. You have topped yourself in putting this article together. I know it's bittersweet but you should feel very proud of your accomplishments in your advocacy work. Great job my friend !!

  53. We have started a home care company for the purpose of giving respite to family care providers. Learning more about Alzheimer’s disease and the current research, and knowing what resources are available for us are very important. We want to educate ourselves so that we can help educate others, and so that we can become advocates for those with the disease and their loved ones. I can only imagine how difficult it must be for someone so young and vibrant to receive such a diagnosis. Bravo for you for standing up for yourself and others.

  54. God bless and keep you in his loving care. You are extraordinary. Leslie

  55. Michael, Thank you so much for sharing your story. My home suffered with dimencia for 8 years before her death in Nov. I was able to witness the progression of the disease from the beginning to the ending. It is a heartbreaking disease that everyone needs to understand. Your story and commitment is so amazing. Thank you for all your efforts that will help others.

  56. I just read your story Michael. My husband was diagnosed at age 49 with YOAD in 2010. He also has another form of dementia, Pick's disease. These are horrible to the person who has them as you well know. My husband now suffers from delusions and paranoia because of these dementias. You are so correct. There is no one out there to help younger onset ALZ people. I have pleaded with Dr.'s and everyone for help. I al at the point where I may have to quit work because I can't get anyone to help. We even called the Alzheimer's Association in Tallahassee, Florida. That was also to no avail. My dedication is to somehow make life easier for others with this early disease and also the caregivers. My husband can no longer stay alone. Since the Alzheimer's Association in Florida couldn't help when we reached out several weeks ago I almost have lost faith in them. Please email me with any suggestions you may have. I would like to help my husband and those to come with this horrible dementia.

  57. Michael – Have you considered attending an adult day services program where you would participate in cognitive and memory exercises as well as physical exercise, arts and crafts, music, etc.? This would provide your wife with a break and give you much-needed mental exercise and meaningful things to participate in.
    Also, we are looking for a national spokesperson for adult day services – would you consider doing this or do you have an idea for a celebrity who might do so?
    Thank you very much.

  58. I know my best friend Carol who i loved forever. Has the Alzheimer's.

  59. Michael, it is becoming more than obvious to me from what I read on this website that the most valued contributions are those from people who have this condition.
    From my own perspective as a care-giver, I really value reading comments from the perspective of people living with this challenging condition. It helps Michael, it helps a lot.
    I hope you keep writing on this blog and help us all to see and feel the plight of people negotiating life with this condition. We will all be better for your valued contributions and for knowing that they come from an authentic rather than theoretical position. I say this because I am weary from clinical opinions. My wonderful Mother is here and suffering from this condition but I think we all get lost trying to find each other in the day to day journey. Someone like you can put up the signposts. I hope you truly believe how valuable that is to people living with this condition and to those who assist those people on a day to day basis. Thank you so much. Go Well Michael, Sincerely, Mary.

  60. One of the hardest things about getting a diagnosis of Alzheimer’s disease is deciding when and whom to tell. When my husband was diagnosed with younger-onset Alzheimer’s disease at 60 years old we were afraid that people would treat him differently, and that our friends would write us off.

  61. While some people with Alzheimer’s disease don’t mind bathing, for others it is a frightening, confusing experience. Advance planning can help make bath time better for both of you.

  62. I was glad to read Michaels article. I was diagnosed with Alzheimer's last year at age 58. I keep a journal which helps me. I can go back and read about things I had not remembered to well. I am very thankful, I am in the early stages. The more knowledge and support we can get for this disease will benefit everyone. Thank you Michael for saying the things others are unable to say themselves. Do not be afraid! Believe!!!

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