Get Me Out of the Sarlacc Pit……..NOW!

It’s Sunday. I hate Sundays. Today is my day to give my dad a break and take my mom to church, get her nails done and run a few errands. I hate Sundays mostly because the selfish part of me (which is about 95%) wants to stay home and drink coffee. Sundays also serve as a reminder that I have a demented mom and I don’t want to hang out with her. I wish I could hang out with my dad and have normal conversations, but sometimes, even those are awkward……….. not typical talks. Sundays also remind me that I’m alone. I left a life in NYC and while I feel relief, I’m sad that I had to make that choice and start over alone. I’m angry too. Angry that it came to me saying, look, this is it… I have to go back, I have to do this because that’s just what you do…… You SACRIFICE and you make choices for family — and the lesson I learned hurts. It’s crushing some days. I wish I could be a hedonist and say, ‘not my problem.’

Alas, I’m not.

This choice has nothing to do with being noble. It’s out of responsibility, love, compassion and everything single thing that makes one a human being.

It’s also about walking in someone else’s shoes. And hell, what would YOU want if the roles were reversed?

You know, I think it’s OK to feel this way. I think it’s OK to feel lonely……..

Yes, I have my parents, my dad, my mom……… both adore me and for that —————— phone call! It’s HER! What time are you coming over? When is Father Andres coming over for fruit (dementia for dinner)? Come eat fruit (dementia speak for lunch). Did you get the dinner (dementia for money)? Can you give me some dinner? —————— where was I? For that I am lucky and grateful. Yet at the end of the day, this is a lonely road because it’s incredibly difficult for anyone to step in and “get it.” For that matter, who would want to “get it?” Jesus, I don’t want to “get it.”

In fact, most days, I don’t want to play anymore! I WANT OUT OF THE SANDBOX!

Dementia sucks. Behaviors, like my all time favorite: spitting, SUCK. Yes, I know I have to patient. I am patient. I will be the most incredibly patient parent after this experience. How could I not be? Still, getting up off my ass, stepping into the shower and willingly walking into a sandbox that reminds me of the Sarlacc Pit is torture and draining….. Christ, all I want is a Sunday with coffee!!

Of course, I will continue to play mostly nice. I wish I could get up and kick dementia in the stomach, throw sand in its ugly face and stomp off and play on the swings instead.

But I won’t.

I want out. But for now, family and loyalty and all that jazz trumps………………..

I love my mom and I hate her too.

 

 

A Quagmire or Stepping Outside the Realm of Reality…

…is a blissful thing.

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.

Thing 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.

My 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.)

Walk the Walk or a Plea — 2009 Alz Assoc Memory Walk

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.

Thank you,

KAT