Boy Meets Mom…..

February 22, 2010

I wonder……………….. I wonder…………………. I wonder……………………………………………

A new development………. I’ve met a boy. Yes, a real boy who actually doesn’t care that my mom is demented. This has always been one of my greatest fears since leaving NYC: Meeting someone who would happily, openly, lovingly accept me and my family….. my mom. For every boy I’ve met over last year, there’s one thought that immediately consumes me—will he accept her? Will he accept this part of me? Will he still want to be with me after he meets the woman who physically pushed me over so she could get to her crush, the priest?

They’ve all failed….. I simply can’t picture it. I can’t picture these men coming over to my dad’s house, sitting there calmly as she spits on the living room floor.

I think this one can hang. I hope he can hang. He knows. I’ve warned him. Maybe I should have given him a more obvious OUT.

God, will he really accept her, the behaviors?

Would I…. if the roles were reversed? Would I smile sweetly? Pretend it doesn’t bother me?

You know, I don’t know what I would do. If this had never happened to her…………….. what would I be like today?

It is what it is I guess…

So when he meets her……………………………………………………………..

Will he smile when spits on the floor? Will he be patient when she points and laughs at someone because they’re overweight? Will he pat me on the back when she looks in the mirror and starts laughing uncontrollably? Will he accept that, unlike maybe his past relationships, I don’t have a typical relationship with my parents.

I, with my dad, am her keeper.

So,the new man in life is going to meet mom next week. He knows the idea of this big meeting is making incredibly nervous, mostly because I know what she’s going to say………..

Translated for those who can’t read dementia (otherwise insert the word fruita, gatos, pajaritos for every other word)………

“Do you speak Spanish?” Fair question.

“I don’t speak English.” She will likely say this in English as she always does.

“Are you going to get married?” Woman cuts to the chase fucking pronto!

“Are you going to have babies?” Jesus, mom!! Really?

“Are you going to take care of her?” I’m 32 for Christ’s sake. Minus the fact that I can’t figure out my budget and I’m over $40+ in my checking account, I’ve made it thus far just fine!

“Do you speak Spanish because I don’t speak English” Again, spoken in English.

My manfriend is very sweet and compassionate. I think he’ll do OK. I keep saying that. I can’t help it. The spitting for me is the worst part. Every single time she does it, it kills me…….. He knows she might hack one right next to him, but he says he understands, that it’s part of the disease and her behaviors are not who she is……… who are you, dude?

Still, there’s a part of me that’s scared. Not because my mom keeps pictures of my ex-husband (not my ex husband, but she can’t remember his name and that’s how she refers to my ex boyfriend) in the house—I’ve told dad to remove. ASAP—but because what if he decides it’s just too much. Too grotesque. The never-ending burden. She’ll only get worse. There is no happy ending. What if he says, listen…….. I just want a normal girl in my life…….

Normal. Normal. Normal. Normal. Normal. Normal. Normal. Pretty. Sweet. Docile. A mom. A dad. Normal. Happy. Smiling. Laughing. Lunches. Pedicures. Normal. Normal. Normal. Normal. Scottsdale. Normal. Normal. Normal. Healthy. Normal. Normal.

I feel like damaged goods. Damaged in the sense that I know that my load is a heavy one. I don’t come with one piece of carry-on, I come with several pieces of luggage that are clearly way over the weight-limit.

I don’t know how this is going to unfold. I think he’ll be OK. I think I’ve met someone really great. Kind. Patient. Understanding. I’ll post an update. Meeting is slated for next week.

Turning the BIG 33 on Thursday. It’s been 5 years since we’ve known something was wrong. Here we are. Another chapter: Boy Meets Mom.

>>Photo from Flickr’s Creative Commons ECATONCHEIRES


…is a blissful thing.9525_158013068765_773513765_2624574_5948944_n

The problem is, you don’t want to re-engage. Stepping back into your own reality can be incredibly frustrating — even tragic. You know exactly what you’re walking into, and you do it, willingly, fighting every urge to run, every single step of the way. Your instinct is to bolt — to another country, one that requires a visa. At least that was my experience. After 10 days in Vietnam with little contact to the demented world, I felt normal — happy, yes happy. Content. Light. I was funny. I tasted pho and freedom. I was wooed by this place, the people, and one charming American. I felt like myself. I could talk endlessly about life, travel, politics, movies, family, and I don’t even remember what else. I drank beer. I laughed. A LOT. Lots of laughing. I never shut up and I was always laughing. The colors were so vivid. The people so lovely. The culture so rich. It was inspiring. Nothing was haunting me… not my mother, not my past in New York. I was truly free.

IMG_0457Thing is, it was a vacation. But for me, it was more than just a mini-break, it was way outside the realm of my everyday reality. A plane ride to a place called SANE.

<<<Me. Resting. Relaxing. Feeling normal. Normal me.

<<<Ah, beach, book, sand.

<<<No mom. no calls. no worries.

<<<Sun. Life. I love you.

Fast forward 10 days.

I didn’t want to see my mom. I was tempted to move into the Seoul Airport, just so I wouldn’t have to go home. Then came the awful thoughts: if she weren’t here, if she weren’t sick, I could leave and do whatever I wanted. I sometimes feel like my entire life has been ruled by someone else — someone else’s desires, dreams, hopes… and now this stage of my life now belongs to my demented mom. It’s not a prison sentence by any means. Logically, I know this. I could leave. I could run. But that would be the wrong action.

FACT: I sometimes suffer from the-grass-is-greener-syndrome. There is no known cure for this when living in an emotional apocalypse — except to smile through it… words, I live by (thanks Gay Talese).

Still, Vietnam was my time. It was my choice. My move. I was in control.

My friends say that I seem different now. That I’m not myself since my vacation in ‘Nam. They’re right of course. I know myself well enough to feel a shift in my own mood. Sometimes, I wonder if I will ever feel settled, calm or content in this role of daughter. I don’t understand the phrase, “Life is Good,” as uttered by the charming American in Vietnam. The thing is, life would be good if she weren’t here, or at least easier. How do you reconcile that fact? It’s true. If she were not here or not sick, our lives would be better.  How can someone have such vile thoughts? What kind of daughter am I? The nefarious side of me thinks, if only… if only…

…it would all stop.

Hit the pause button. I have to pee.

Vietnam was my pause.

Now, here I am. Taking her calls. Listening to her complain about the live-in, how she needs to go to a doctor… again. How she wants to invite Dr. (she means Father) Andres for fruit and why the fruit for her fruit on her letter and the money someone owes her because the fruit said so… Her new thing: she wants me to buy her a car. Nothing fancy. Something small. OK. she makes me laugh. Life ain’t great, but it has it’s moments with my demented mom.

Now who’s the demented one?

Here is the deal: I’m a realist. And this is my reality. Yes, I’m still bent out of shape about the ordeal, and yes, it may take me longer to find my balance after stepping outside the realm of MY reality, but it is what it is. Dementia is a constant fight… a fight with yourself, because you do want to give up. I’ve been doing this for a while now and yes, I would like to throw in the towel. I am 32 and I think about who would want to marry me with a burden like this? How can I start a family when I’m still struggling and coping with my own family of origin?

Worse yet, for many of caregivers, it’s literally one or two against the beast. How many people dealing with disease have family members who do absolutely nothing to help. Only children fighting this disease alone — with no parent or family. Siblings who sit back and only offer criticisms? You should do this, you should do that… Or my personal favorite: the friends and relatives who “think of you,” but do little to actually make your life or your demented parent’s life easier. Really?  “I’m thinking of you,” that’s all you got?

I’m thinking you can suck it.

I mean that nice.

So here I am. Back in it. Caregivers, no matter your role, are the warriors in this fight. Just make sure whenever you can, no matter how you do it… STEP OUTSIDE THE REALM OF REALITY. Often. Yes, you’ll have to come back and play in the demented sandbox (believe me, I don’t want to play anymore either… this game is bunk, I will throw sand at anyone who gets in my way of giving her a good life), but TAKE CARE of YOU.

9525_155808573765_773513765_2610259_2075389_nMy travel pick: Vietnam. It’s far away, e-mail is slow, so you can’t feel to bad if you don’t connect with family, and phones, well, much too costly after a while, especially when you start thinking in Vietnamese dong. Best of all… the people are incredibly lovely and humble… Sin chow (that means “hi”… I forgot how to say goodbye.)

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.
a76281963bb247e8b7db981a02ad5b56
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 youe2ee38e0e086461f8ae8c9abeb62d661 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.

Thank you,

KAT