Tuesday, June 23, 2009

Still Alice

I just finished reading the book Still Alice and I’m wondering if any of my fellow bloggers have read it? It was a good book but I found it very interesting (and confusing?) that the main character KNOWS that she has early-onset Alzheimers.

With my mom, she never realized that she had Alzheimers. She would have days where she would realize that things weren’t quite right or that she wasn’t thinking properly but she would never be able to tell someone (never mind REMEMBER) that she had Alzheimers.

I found it frustrating when people would ask me “how my mom felt about having Alzheimers”. I also found it really hard to explain why I couldn’t just sit down and chat with my mom about her condition and how she’d understand and everything would be better. I’d tell people that it does not work that way and they would look at me like I just wasn’t trying. My mom couldn’t remember what we talked about 5 minutes ago, never mind remember day-to-day that she had Alzheimers.

I read a blog once (can’t remember the blog’s name) where the person was “going to tell her mom tomorrow that she has Alzheimers and wish her luck” because she (the blogger) was moving away and leaving her mom on her own. WTF?! I was so floored by this entry that I wondered if the blogger wasn’t fully coherent either.

Over 16 years, of all the Alzheimers patients and caregivers that I’ve ever met or corresponded with, I’ve never heard of a patient who is fully cognizant of their condition and goes around telling people about it like they’re talking about the common cold. Can you imagine?!

“Gee, you missed your appointment this morning”
“Yep, must be that darn Alzheimers flaring up again”

This is the case for most of the story in Still Alice and I found it quite irritating to read. It gives people the wrong idea about Alzheimers. I won’t ruin the book for those who have not read it but by the end of the book, I thought to myself that it was a mild portrait of Alzheimers.

Is there something different about early-onset Alzheimers? Do they have a period of time where they comprehend and REMEMBER what they are facing? There was one early-onset Alzheimers patient at my mom’s first care facility and she was not aware of her condition. When I first met her, I thought she worked there because she was relatively young, still well dressed/accessorized and groomed very well but once you watched her for a few minutes, it became apparent that she was a resident.

What about my fellow bloggers? Did your parent ever know or realize they had Alzheimers? And when I say know/realize, did they remember it from day-to-day and fully understand what was going on (not just for a few minutes when you talked about it).

Tuesday, June 2, 2009

One Year

It’s been a year today since my mom passed away. It’s hard to believe an entire year has passed since that dreadful day. It seems like it was just yesterday sometimes as I can still hear every word of “the” call fresh in my mind. It still hurts like h*ll and I still tear up at just the thought of my mom.

I’ve been through many emotions this year, ranging from deep sadness to anger to guilt. I’ve been selfish and extremely needy at times. I’ve felt completely lost and withdrawn at other points.

Somedays I’m okay and that is becoming more of the norm. On other days, random memories, images, sounds, smells, tastes or whatever suddenly sneak up on me and I’m bawling my eyes out before I know it.

Is the anniversary any different or harder than any of the other 364 days? Yes, it is in a way because the date sticks in your mind and it’s a milestone. You’ve made it through an entire year which is quite an accomplishment. You’ve made it through all the meaningful dates of the whole year without your mom. All of the “firsts” are done. First Christmas, first Mother’s Day, first birthday (which I’ve always considered my “anniversary” of sorts with my mom, it’s the first day we met!)…I know when I lost my dad, the first year was definitely the hardest.

On the other hand, the anniversary isn’t as hard as other days. I know I’ve had much worse days than today. Just because today marks “ONE YEAR” on the calendar, doesn’t mean it’s the worst. I can think of a handful of other days in this past year that were way worse. There were days where I would cry so hard that my throat would be hoarse from wailing, I’d throw up and I’d have a full-on asthma attack. Those days were dark and horrible but I did feel a weight off my shoulders after letting all of that raw emotion flood out of me.

Two things have really helped me through this year. My close friends have been so caring, supportive and patient over many years, not just this year. I am thankful that I have them to lean on and to pick me up when I fall down. I wish I could say the same for my siblings. Blogging has also really helped me. I’ve found it extremely therapeutic to write about my experiences and hear from others going through similar situations. I am doing better overall but this situation was a long time in the making so the effects will be felt for some time… and some effects will be life-long.