Walk to End Alzheimer's - The evolution of a Solicitation/Plea 2009

I'm getting ready to do my third Walk to End Alzheimer's this year. I like to take a look back at my original emails every year to see where my head was at when I wrote them. Its also interesting to see the things I focus on and my own sense of how important things were then vs my relative acceptance of things now. The thing that sticks out most to me in this email is my relative peace with and curiosity  about the disease. Two        years later, I admire that woman who wrote this letter and sometimes even envy her a bit. If you want to donate this year, click here.


-Dulciña

EMAIL DATED SEPTEMBER 26th, 2009
Hey Guys,

You guessed it. This is me asking you guys to donate to a cause again. I'll be doing the Memory Walk for Alzheimer's on October 25th. It would be great if you guys would consider giving to the cause. Here's my page http://MW2009nyc.kintera.org

As many of you know, I've been back at home living with my family for the past year and not working for a significant portion of it. What you may not know is that this means that I am back living with my grandmother who during the time I had moved out was diagnosed with early stage Alzheimer's. This has afforded me the unique opportunity to observe the progression of the disease on a day to day basis while also becoming a secondary caregiver to my grandmother.

There's no easy way to describe what I've seen and felt for the past year. I'll highlight for those who may be interested just a few things that immediately pop to mind as interesting observation/things you may not know/ random stuff to help you understand what this process has been like for me.

1. People who suffer from Alzheimer's get progressively more paranoid. My grandmother constantly hoards and packs away things she doesn't need "just in case" and when she can not locate them, immediately believes that my mother or I have put them somewhere while she wasn't looking.

2. For the first time, I've heard my grandmother tell tales of her own mother who I never met. This has pushed me to find out more about several of my long dead relatives. I've got to tell you, I've got a much more colorful family history than I ever expected.

3. Guilt and frustration go hand in hand when you're a caregiver to someone with Alzheimer's.

4. Regarding the former, I am significantly more patient than my mother or brother who also live here. I've attributed this to the fact that I majored in psychology in college and therefore knew a little bit more about what I was getting into and also remain morbidly fascinated with the progression of the disease.

5. Deja vu becomes the norm. Not only do Alzheimer's patients repeat themselves, my grandmother (and this may be all patients, I'm not sure) repeats the exact same phrasing when she repeats herself. There are stories she tells over and over, and I can now predict almost EXACTLY what words she's going to use in the exact order whether she told the story this morning or three months ago.

6. I've never been super religious or spiritual, but this past year I've felt more connected to God than I have in previous. I've also started going to church once a month after not having gone, but for special occasions, since i was a child. Interestingly, it's become a bonding experience as I usually take my grandmother (who is very religious but not mobile enough to go to church on her own) and my mother ( whose visits were sparse like my own) with me.

7. As many know, I was quite happily unemployed until a couple of months ago when I got bored and started to get antsy. Now, while I want to start working again, I'm nervous about not being around constantly. At the same time, I'm desperate for personal space. Once I'm in the position again to move out, I'm not sure if I'll be able to. (As an FYI, for those who do not know, I share a room with my grandmother. When I moved out almost three years ago, my grandmother had not been diagnosed. Approximately a week after I moved out, my grandmother had a minor stroke, Several months later she got the diagnosis. This has never sat well with me)

8. My grandmother always knows exactly who I am at the core, but peripherals about me will float away from her occasionally. The other day she asked me if I was pregnant when I came up from Jamaica (she was thinking about my mother who came up here in '81). Every once in a while she'll call me Bibby but know I'm Dulciña, her granddaughter. I let this slide more often than not.

9. Even with everything I've said, my grandmother still remains the woman I have known my entire life. She has stayed in this relatively early stage of Alzheimer's much longer than some people get and I am grateful for that.

Hmm, I never took the time to write down any of my thoughts on this before, and as I do so now, I realize there are a millions things i could write "off the top of my head" so I'll just stop there. For those who read this far, thanks for taking the journey. It would be great if you can find it in your heart (and wallets) to donate. Take care!