Dear MDM Supporters, friends and family-
If you’re reading this blog, then you know my story. If you just stumbled upon this blog… then here’s my story in a nutshell: My mom was diagnosed with dementia — vascular dementia and Alzheimer’s disease in 2006… although she is still the good-natured, loving and kind woman she was before the disease took hold of her mind, it is sad to see my mom turn into a child right before my eyes.
A lot has happened since I walked last year… I have moved back to Phoenix to help support my dad and mom. I have started a new life in the desert, and while I am content with the choice I made… there’s still some sadness… my own life has been a roller-coaster of emotion over the last 2+ years as a result of her illness and the choices I’ve had to make. I always say that this is not the life I pictured… at 32, I thought would be married with a family of my own… and heck, even a white picket fence with a view Camelback Mountain… but with each day that passes, I am more accepting of this life and of her disease… even of the person she is today — as frustrating as she can be… sorry, it’s true. Mom or Gaita (her childhood nickname, which is what she responds to… not mom or mami) challenges me… she is testing and teaching me how to cope with a crap hand with some grace, patience, love and sacrifice… and to no longer value privacy, especially when I am getting dressed or using the bathroom. I often write in my blog that my memories of her BEFORE the disease are fading… I am learning now to embrace these new memories of her… even though they’re totally demented, they sometimes make me smile and we still have our moments. Moments when it feels like she’s the mom and I’m the daughter again. That has been an especially difficult lesson to learn because you don’t want to like this new person…
You know, I don’t know what the future holds for her. I don’t know how long she’ll live, and even if she lives another 5 or 10 years, she will continue to lose her mind. Her memories will fade and she will one day look at me and wonder who I am.
Dementia has rocked my family… for my mom, she smiles and is happy just to feed her birds and go to church (she has a crush on our priest and even pushed me down once to get to him — you can laugh, I did)… for me and my dad, it has been another story. Dementia doesn’t just affect the lives of the individual with the disease, it ravages the lives of the family — it consumes you, it beats you down, it drives you to the point where you just want call it a day. We’ve both stood on that ledge, looked into the abyss and seriously contemplated the point, the meaning of it all… with GAME OVER flashing in front of our eyes.
The thing is, the game’s not over. Not yet. So what do you do? You keep going and you do what you can. You have your moments where you think, “this totally sucks, I hate everyone and life’s unfair…” then you shake it off, go to work and start creating a life outside dementia.
You also walk. You walk to make difference so that hopefully, one day, this will be a curable disease — a glitch that can be fixed with a pill or vaccine. You walk because you don’t want your friends or other family members to deal with this kind of pain. You walk because if you ever have your own family, you don’t want your child or your grandchild to suffer from this disease. You walk because you know that every 71 seconds, someone develops Alzheimer’s disease. You walk because currently, more than 5 million Americans have Alzheimer’s, and 78 million baby boomers are at risk — my dad, at 62, is a baby boomer. You walk to support your friends who are also coping with this disease — in some cases with little or no support from family.
On October 25th, I will be in NYC to walk with my friends in the 2009 Alzheimer’s Association Memory Walk.
If you can’t walk with me that Sunday morning at Riverside Park, please, please, please, donate to this worthy cause and help me walk (or rather STOMP) on dementia.