…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.)
My Demented Mom 
Kathie,
I so enjoy your writing. You share so many feelings that most fear to think, let alone state out loud for others to hear. You are a strong, brave woman. I have no doubt someday a wonderful man will see all you have to offer.
I am so glad you were able to take sometime for yourself and have a vacation. Escape and experience reality in a new realm. One where you could relax and embrace the self we all loose during our caregiving days.
I also have to comments that your writing seems calmer these days. Still very powerful and honest, yet it seems to me as an “observer” you’ve found ways to find some balance. Maybe it was the vacation. Maybe it’s just all the time that has passed.
I also loved how you mentioned “Life ain’t great, but it has it’s moments with my demented mom.” That made me smile and showed your inner strength. I so know what you speak of.
Wishing you peace within, hope, and balance –
Keep up the great work!
Lori
Hey Kat,
Great flow to the post. You instantly put me in the place that you were visiting a few weeks ago, and also where you are now. Felt the need to comment on both worlds…
First, the trip. I can totally relate. I escaped back in 1994 and left everything familiar to me behind. I escaped the college bubble for 6 weeks and found something…
…a dicotomy.
I found that not only was I a Type-A, East Coast kid running a newspaper, yearbook, and ad firm who found himself recently single. I ALSO found that I was someone who could actually give himself to his surroundings of art, cuisine, and the european lifestyle without having to control every minute.
So, in the end, I found something else. Balance and perspective – and brought both back with me. They stay with me to this day as basic building blocks of my psyche.
You did this. You immersed yourself, and your soul has expanded and evolved because of it. No one can take that away from you – no matter how dark it may seem at times with your Mom. Keep building that type of currency…it’s yours forever. There’s no debt that you need to pay off there.
On reality and dealing with a sick loved one…’legacy is more valuable than currency’ – Gary Vaynerchuk
Our family is struggling with similar issues on many fronts right now, and I can’t begin to tell you how it’s not only the elephant in the room, but that elephant is also on fire. My mom takes are of my grandmother (92). My uncle (who has stage 4 cancer BTW) takes care of his uncle (82). And my 30-something sister-in-law was just handed the keys of her father-in-law’s dementia (77).
All I can offer is the following, simply because it make sense. Or, at least it makes sense to me:
You say to take care of yourself. I completely agree, and part of that is building the deep meaningful relationships now so when the time comes when you can’t take care of yourself, that equity in people is there when you need it. More is better in the end in my humble opinion.
So by that rationale, you MUST break the cycle every now and again. If only to build a better you by getting out of the day-to-day to build these new relationships and widen your ecosystem. I have lifelong friends to this day that I would have never met otherwise. Who knows, maybe some of those people will be there for me in my twilight years, or heaven forbid broken down somehow.
The silver lining within the day-to-day reality is there too. Right here. Within the realms of blogging, social media, etc. More connections to make, to perhaps cultivate down the road in person at events, to widen that circle even more. Hopefully, in the end, there will be more of us to take care of each other simply because we built real relationships that became real equity when we need it.
Oh, and if some of you are reading this and you’re not directly taking care of someone in need, then guess what, someone you care about IS doing it…so take care of THEM.
So Kathy, please let me know what I can do to help make YOUR life a little easier, as you would do the same for your Mom.
Rock on…
– KG
KG, Thanks so much! Thank you for sharing your story. i had no idea. hugs, me
you sound GREAT. I’m so glad you took this trip. You’ll be able to “revisit” even if from the inside of your head and find more and more strength. what a journey you have been on and you constantly teach us caregivers how to journey better. thanks. thanks for caring for yourself. you really encouraged me today.
Oh Kathy, you worded my personal thoughts and pains so eloquently… thank you.
But, don’t despair. You can meet the man of your dreams even as a care giver. I did. We married last year. We all live together, my demented mom, my mother in law and my brand new husband.
He’s amazing. You will find your true love – you so deserve it.
My mom, she’s doing really great on Natural remedies, she sees a Naturopath doctor. His goal is to give her more good days than bad – so far, mission is being accomplished. I’m actually starting to get to sleep at night!
Hang in there. I love your writing.
Sue
How are you doing now, in March of 2010? Is Mom still with you, are you still with Mom?