World Alzheimer’s Month (You Should Watch This Video)

It’s World Alzheimer’s Month. I hope you watch this video. Share this video. Tweet this video. Facebook this video. Tell people about this video. If you’ve been touched by Alzheimer’s disease or any other dementia, consider it your responsibility to spread the word. Make people aware. It starts with YOU.

I Don’t Feel Like Writing Anymore

Something happened.

We lost ALTCS………………… Arizona’s version of Medicaid. You see, no one who is actually Middle Class (that means you) can afford quality nursing home care when the time comes…………….

A good nursing home can run around $3,000-$4,000 a month. That’s a lot of green. Frankly, I don’t know how people do it without aid from the state. Anyway, avoiding the gory details, we lost our insurance and had to reapply for ALTCS again. The process is long, tedious, detailed and incredible stressful. So needless-to-say, when I found out we were dropped, I went home, sat on my sofa and cried. I contemplated leaping out my window…………….. I didn’t want to go through this process again. I didn’t want to have to deal with this……………… yet again.

How could this have happened? I know how it happened. I don’t want to get into details. It only stresses me out.

I will say, that situation was the beginning of my end…………… I’m over it.

September is World Alzheimer’s Awareness Month, and the entire month is dedicated to awareness. Awareness of this horrible disease………………. or at least one aspect of it: Alzheimer’s disease (in small print: and other related dementias).

I struggled to do my part this year. I tweeted. I wrote Six Word Memoirs about her disease. I turned the My Demented Mom Facebook page purple.

Clearly, I didn’t do that much. Nothing especially worth while. I didn’t skydive like some advocates. I struggled to churn out my story in six words………………..

I mean, why bother? 

I’m well aware of the effects of this disease…………….. or rather, frontotemporal dementia a.k.a, “the other related dementia”………….. and let’s face it, if you don’t have a parent, friend or spouse with the disease, you probably don’t care that much about it…………… Sure, you’ll pay it lip service because that’s what nice people do. But it’t not top of mind for you……………. you don’t write emails to politicians pleading with them to do something about this disease that likely WILL affect someone you know and love…………. in 10-20 years. It’s OK. I understand. Truly. Do you think Sjorgren’s Syndrome is top of mind for me? Do you think I own a T-shirt? The answer is no.

So, here I am telling people my story. I have been since 2007 I think. But it’s getting harder and harder to write about it. I’m tired of fighting it. I’m tried of trying to make YOU care about me.

It’s funny how people forget about you……………… about HER. My mom’s been sleeping a lot so we’ve missed Mass these past few weeks……………. no phone calls. No visits to the house. No one seems too worried.

She could have died and no one would even know.

And don’t think attending her funeral will absolve you of years of absence.

So, yes. I’m angry. Tired. Frustrated. Frazzled. Irritable. Stressed out.

I’m sick of this disease. I’m tired of seeing it rape my mother’s mind………….. and the worst part is, she’s physically healthy. I have to watch this thing eat away at her gray matter………. but it won’t take her out.

Cruel. Taunting.

Her dementia is gnawing away at her, and will continue to do so until she’s a listless mass of human flesh with a heartbeat. What will God do with her soul then?

So here we are……… playing a waiting game with the state. Hoping things will work out because, well, they have to. She has to go to a nursing home. It’s time.

This disease has cheated my mom out of her life. It has robbed my dad of his life………….. and peace of mind.  It has forced me, more than once, to make sacrifices and hard choices. I started life over in 2009 with little money, no job and two cats so I could be here with my family, to participate in this grotesque life experience.

Now guess what?

I’m over it.

I Look Like Her

I do not look like my mother.

But ask anyone else and they would disagree with me. Oh my God! You look exactly like her, they say…. I’ve tried, but I have never seen my mother in the mirror……………….. And I have many mirrors. Truthfully, I’ve always fancied myself my father’s daughter……………… both in appearance and overall disposition. However, in recent years, I’ve come to the conclusion that as far as disposition is concerned, I am neither parent.

I march to the beat of my own drummer………….. my temper is neither his nor his, maybe a blend of the two…………….. My coping mechanisms are much different. My approach to problems, vastly different. My view of the world…………….. different.

My sense of humor is neither his nor his……………. In fact, as sad is this may sound, I don’t recall either parent ever making me laugh out loud. I don’t remember much joking going on at all in our house. That might explain why I overcompensate in the humor department………………. I like to laugh, and I have a pretty loud laugh.

Just ask anyone who knows me.

Physically, I always thought I was my father. Big lips, brown hair……………….. wide feet.

It actually bothers me when people remind me that I look like my mom. I have no idea why, I almost find it irksome………….. I don’t look like her, I think to myself when people make the comparison…………… I can’t really explain where this contempt stems from, except to say that I’ve sort of always viewed my mother as weak. Fragile. Never one to take risks or follow her heart. Never one to pursue her dreams. She is dying now and I know that she never accomplished one of her goals……………………… She would always say, “I should have gotten my degree, so I could teach Spanish…” or “If I had started working on my degree when we lived in Iowa, I’d be done with it by now…” My mom had earned her college degree……………….. in Ecuador. She needed to take more classes in order to teach here in the U.S. She never realized that dream. I suppose there was always something…………………. isn’t that how life operates? There’s always something to keep you from doing what you want to do……………………. Instead of going to college, she taught privately at night to school teachers here in Phoenix who needed to learn Spanish and worked as a school secretary. I don’t think she was especially happy about her lot — she always seemed anxious or nervous; she was a hypochondriac. There was always something when it came to her health…………. maybe she knew all along that something was wrong……………….. nobody would have figured out, not until she was too far along to do anything (if anything were an option) about it.

I don’t know what my mother was like before she met my dad……………………. I have a photograph of her from when she lived in Louisiana (was she this world traveller? Is that where my itch to see the world came from?) and on the back she had written a note professing her love………………….. to another man. After living in Louisiana, she moved to New York City (like mother, like daughter I suppose) where she worked as a secretary. I have no idea why she went to Gotham………… all I know is that she lived in Corona………… a neighborhood in Queens that is still popular with the Ecuadorians. Someone in Corona probably knew my mother……………. what she was like, what she aspired to do and be………………….. my mother’s past is shrouded in mystery. I don’t even think my own dad knows that much about it……………………

I suppose it is because I don’t know her………… I don’t see the resemblance. We’ve always been different she and I…………… I often wondered if she thought she had done something wrong in raising me………………… why is she like that? 

It doesn’t matter because it doesn’t anymore.