I found out spring of 2009 when my dad called me to let me know of her diagnosis. I can still vividly remember that moment to this day. Nate and I were test driving a car to buy and I received a call from my dad during the drive. Our family had known of the possibility of Alzheimer's for months but it had never really hit me. At the time I really didn't know much about the disease and that it would kill her. The news was still devastating despite my lack of knowledge and understanding of the disease. At the time I was working at a daycare and they would have me go cover people in the baby room so they could take their lunch break. Those babies were the only comfort I felt for a long while, just holding them would make me feel a little better, a little happy. It would help fill the whole in my heart that was now there for a moment.
For years I was in denial that it was going to kill her. I had already witnessed the changes in her and her slipping away previous to the diagnosis. I could acknowledge that something was indeed seriously wrong but my brain wasn't ready to accept that she was dying before my eyes.
Christmas of 2011 Nate and I were spending the holiday at his parents house. I remember finally beginning to accept that something was very very wrong with my mother and I needed to find out the whole truth about the situation. I called my dad and asked him what was going to happen to mom and what all the disease entailed. He told me about how she was going to steadily decline and there was no way to tell what would go next, or how quickly. He told me it was going to slowly kill her and that she had anywhere from 5-15 difficult years or so ahead of her. It broke my heart, and it has never been the same. It is indescribable coming to the realization that the woman who raised and loved you all your life has been slowly dying before your eyes. That those pieces are never coming back, taken forever. That you now get to see her slowly slip away in every way imaginable, her body physically reminding you of what was once there but now gone.
This is what Alzheimer's does, it kills, slowly and painfully. It is a silent killer, hiding beneath the surface masking itself in symptoms that are often misdiagnosed at first. Most people have had the disease for 10 or more years before diagnosis. There is no treatment, there is no cure. All they have so far is medicine that masks some of the symptoms, which in time stops working at all.
That isn't enough. Having someone you love dying from this disease is an indescribable Hell. There is no treatment to give you hope that they can beat it, or get better. It is a death sentence and there is nothing anyone can do about it.
I am walking to find a cure in honor of my mom who was the best person I have ever met. She brought joy and happiness to everyone she came in contact with. She saved me many times throughout my life, and I know I would not still be here had she not been apart of my life during my times of difficulty. I'm walking so that one day they will find a cure for this death sentence. To find some form(s) of treatment to give families some hope, to help lighten the load.
I have set up a page where you can sign up for my walk (free registration) and donate. I have a goal of raising 1,000 dollars and if you are able to help I would greatly appreciate it. The walk I am doing is in Lincoln Nebraska and I know many of you are not able to participate due to distance (or other circumstances). If that is the case you can sign up to do a virtual walk or go look up where a walk is near you (which there are A LOT). Another thing you can do is write words of encouragement on this page. I will be having my dad checking in on it, and will be sure to have him read anything that is written to my mom to her (she can no longer read).
I know in times when people are hurting it is hard to know what to do for them. Here is a list of things you can do to help me if that is something you are wanting to do:
* Talk to me about memories you have of my mom, those who have had the privileged of meeting her. Or ways she helped you in your life. Feel free to share them below.
* You don't have to come up with some magical thing to say to make me feel better. All I need is to know you care. Plain and simple. If you really want to know how I am feeling and what is going on ask me, I am open to sharing with those who are sincere in wanting to know (please don't ask if you just feel obligated to).
* Join me in my walk Sept 15th if you are able to, it would mean the world to me. If you can't join my walk, join me virtually or find one near you and tell me about it.
* Share my blog with anyone you think it might help. That is a huge reason why I write on there and am so open. It is difficult to put myself out there in that way but it is something I feel strongly I need to do. I keep doing it in the hopes it will help people in any situation they are in.
* Don't distance yourself from my mom and dad.
I know this is something we tend to do in situations where we don't know what to say or how to handle something. I completely understand how seeing my mom is alarming and difficult because of how different she is. You are not going to break her or make things worse so don't avoid her. My parents need you. If you are avoiding them because you don't know what to do/how to help/what is going on with my mom just ask me or my dad. What is happening to my mom is the equivalent of someone being terminally ill with cancer, that is how severe it is. I know this disease is hard to wrap your head around and understand but you are needed. There are so very many ways to help: a nice card, sending flowers (my mom adores them), doing some service for my parents around the house (my dad is having to do everything now when it comes to cleaning, cooking, managing bills/household while also talking care of my mom 24/7), coming to visit my mom (Her long term memory is still there so there are still plenty of things to talk about), calling my dad up and seeing how he is doing, bringing them meals, coming into the house and watching a movie with my mom so my dad can run some errands or go for a motorcycle ride to get some "me" time. The list goes one and feel free to ask me and we can come up with something that is comfortable for you, I promise.
* Remember my mom. Whether it is just taking a moment to remember her and the encounters you had with with her, or actually sharing how she blessed your life with others.
* Cherish your loved ones. Tell those in your life how much they mean to you.
Below is the link to my site where you can sign up for a walk near you, sign up for my walk virtually or physically (free to join walk), and donate if you feel so inclined.
My walk page.
Thank you for reading about my story and I hope in some way not matter how small it has helped you.