Tuesday, May 7, 2013

Although my intentions when I started this blog were to focus on running and working out, I feel a need to express my thoughts and feelings about the effects of Alzheimers Disease. I spend most of the time in denial and I keep thinking the tests (Pet Scan & Spec Scan) were wrong. But deep down I know they were correct. Most people associate a terminal disease with pain and suffering or at least I do, so perhaps that is the reason I am in such denial. I have been through many phases over the last couple of years since my diagnosis. Some phases I have forgotten and others have just passed. The first reaction I had was anger and sadness. After that, I felt like I wanted to travel and experience everything I'd aways wanted to do, in other words a "bucket list". Well I found myself in a little financial bind after a year of travel and having way too much fun. As I look back, it wasn't really fun, I was only running to hide my pain, The pain of knowing how I was most likely going to die and the pain of losing the man I loved so much.

As time moves on, I realize how this Alheimers disease really works. It's not like you wake up one day and forget everyone and everything, it's a gradual thing that happens. I noticed in the last year or so that I try to separate myself from any drama or bad situations as much as possible. I don't deal with that well at all. I have much anxiety when bad situations arise. I recently became aware that all of my close friends (long and short time friends) and family members were not in my world as much anymore, if at all. I used to think they pushed me away, but I now realize that I pushed them away. I have forgotten not only my own childhood memories, but now I can't remember my children at any other age other than now. Their childhood is no longer a memory to me. Hard to accept but it's OK. I can only hope they have fond memories of me. It's the same for me with friends and relatives. Relationships that I developed in the past are no longer. I can only live in today and pray that tomorrow brings a cure. It is difficult for others to understand this because I barely do myself. So while others think I may be upset or mad with them, in most cases, that is not true. I just can't remember the ties and relationship we once had. I do remember them as people and that they meant something to me. I think because I am so active and physically healthy, others can't understand that my brain is dying. To sum that all up, it seems that if someone is in my life on a daily basis or even weekly, the  information continuously gets renewed in my brain. Those are the only relationships I know how to have now. I decided to write this in a way that others will somewhat understand my life with Alzheimers. I only have love for all!


  1. are you still there? I found your blog by accident and I am so touched that you are such a young Alzheimer's patient and trying to document your story through your blog. you are brave!

  2. Yes, thank you SaharaViolet..it's my intentions to help others and bring awareness to all that it's not just the elderly that have the disease. I appreciate you reading my blog!!

  3. My mom had early-onset Alzheimer's, as well. I can only imagine what being her was like at the time of her diagnosis, the days leading up to it and the days that followed. She also began travelling with my dad, taking their honeymoon for the first time in the 32 years of their marriage and going places they always wanted to go. Your courage and vibrancy remind me of her, and I thank you for that :)

    One thing I always wonder about is how well I handled her illness. I did my best to treat her as who she always was, and we never talked about her fears or mine. I would come home and talk about my day, as usual, try to give her peace if I saw she was getting overloaded, and make her laugh when I knew she was struggling. I wanted so badly to put on a brave front for her that I fear I might have deprived the both of us of meaningful moments to share our pain. For the sake of others going through the same thing, how do you and your kids cope? Do you talk about it with each other? Do you want to?

    And just so you know, no matter how many memories my mom lost, I'll never lose my memories of her unless something as cruel as Alzheimer's rips it out of me. It's those same memories that keep her with me every moment, that still guide me through life and help me make difficult decisions. I always ask myself, "what would mom do?" Your children, too, will cherish their memories of you forever.

    Thank you for this blog :)

  4. Hello..thank you for your comments and questions. We always question whether we do the right thing or not in these situations but the truth is, there are not instructions, especially for loved ones. As for my kids, it is different for each one of them. Karen, my oldest, doesn't really acknowledge anything is even wrong. Honestly, I don't think any of them really know what to expect. I also think at this point, they do realize I have changed, but don't think it is from the disease. That is just a guess. My daughter Sharon (lives in Texas) does talk to me about it and offers to take care of me when the time comes, but I don't think she really realizes how big of a task that will be. She is married and has 2 small children. My son Ronnie is always researching and trying to come up with a way to either prolong this beast of a disease or even come up with a cure. He is probably going to feel my absence the most, only because he doesn't have anyone else in his life. My son Michael is in total denial and either doesn't care or doesn't believe it is really happening. I don't know what the future holds but I can only pray that it is not painful for any of my children. As for your Mom..I can tell you for sure that she did know that you loved her very much!