Keeping mom at home is becoming increasingly difficult and stressful. I’ve found a home that I think will be a good fit — as good as they get. It has a solid reputation both locally and nationally. Still, it’s a home. Or more accurately, a floor. A floor filled with people who sit in wheelchairs or limp slowly around.

I’m not sure if mom has gotten worse or if my dad has simply reached a point where he realizes he cannot do this for another 5 years. Physically, she’s in good health. I don’t blame him. In fact, I’ve been pushing him to start thinking about placement again.

He goes back and forth. I can do this for another year. I don’t think I can do this. I want her to spend Christmas here in her home. Good days, bad days.

Mom requires constant care, especially when it comes to food. Dad has to chain up the refrigerator. I’ve heard of other caregivers doing this. I remember one girl from my support group in New York telling us a story about how her dad drank an entire bottle of olive oil. I think I laughed at the time. My mom did something similar, except her drink of choice was maple syrup. I didn’t laugh at that. Of course, maple syrup turned out to be a minor infraction. Dad said she tried to eat raw chicken… she was hungry, she went to the fridge, she took out food. Dad stopped her. She put up a fight. She wanted to eat. She’s strong.

If dementia doesn’t kill my mother, salmonella will.

This is my life. This is our life……………………………………………….

…………………………………….which explains why I get so incredibly bent out of shape when people complain, yet do nothing about their lot in life. I know a small handful of people who complain about their job. Constantly. I was one of those people, but I left. I got off my butt and did something. I find myself wanting to slam their heads against a wall in an attempt to remind them that they still have their minds……………… free will, choice….. it’s a gift, so do something. Quit complaining. Stop threatening to quit and take up a job at Starbucks… if you’re that miserable, do it. Work at Starbucks. I could use a discount. I want to remind these people that my mother’s life is over. She has no free will. Her daughter and husband are talking about institutionalizing her — right in front of her. She can’t understand us. She doesn’t connect the dots. She sits there with her hot water bottle starring into nothing. My mother’s mind is gone. Yours is fully intact. Mostly.

I know people who complain ad nauseum about their lover/spouse. I don’t understand how you can stay with someone who makes you so miserable — and who, if you become seriously ill, will be your primary caregiver. Do you want this person to change your diaper? Think about that. You get one year to hate your mate, then you should do something. Do something. Own your life. Seize it.

Life is short. Life is not always easy. It could be worse (and it could be a lot better aka Kate Middleton).

I know this sounds rather sanctimonious, but I don’t care. I don’t care. I’m sick of it. Sick of listening to people moan and complain about circumstance they can change — or at least try to change. You can try to change course. Try.

Don’t be that Eminem/Rhianna song.

My mother can’t even try.

Everyday is Groundhog’s Day for my mother and my father.

I didn’t create my current drama. Sometimes I feel sorry for myself and dwell on what I don’t have. But unlike a job or a spouse, I can’t get another mother. So when you feel sorry for yourself, why not spend a day with my mom…. you’ll quickly get a grip.

Life’s not that bad, and Starbucks offers its employees health insurance.

>>Flickr pic by I Believe I Can Fry

Now, my heart breaks for her because she no longer has her circle of friends….. she doesn’t remember most of them. And her friends from church, they smile and utter a few words, “We love you Margarita,” or just look at both of us with pity in their eyes. What can they do?

And then there are her behaviors.

It occured to me that I may be her only friend. She counts on me for a ride to church. She counts on me to take her to Great Clips for her haircut. She counts on me to answer the phone when she calls to invite me (over and over and over and over and over and over and over) to her house for dinner or just to live with her. She counts on me to walk her up the aisle at church so she can invite Father Andres to the house for dinner….. yet again.

She counts on me. She trusts me. She needs me.

Yes, she has my father, but she knows that he’s her husband and primary caregiver. And I suppose everyone needs a friend—that one person who you can confide in (like when she whispers in the phone that there’s a strange woman in the house… our cleaning lady Gloria). And now I’ve left her. I’ve been gone nearly 18 days. Still not home, even as I type this. I won’t see her for a few days………….. I can see when she calls and mom hasn’t called in about a week. I wonder if she’ll recognize me? I wonder if she’s all but forgot who I am. I have no idea what she retains or if the image of my face is a blur….. that person…. that girl. I know her, but can’t place her.

She fought back.

I struggled to keep her in her seat.

She started to whine……………………….. “Dejame! Dejame. Porque no me dejas!?”

I started to plead. “Gaita, por favor. POR FAVOR SIENTASE!”

I tried threats…………………………………. Sit down or we are leaving. Like I could drag her out without causing my 73-year-old mother to suffer a complete meltdown.

In seconds, she was up again and I placed my arms around her and pulled her down to her seat. The women in our pew tried to distract her. “Margarita, mira esto! Margarita!” She would have none of that. To keep mighty mom in her seat, I flung my legs over her lap and tried to get her to focus on me. This went on for about 3 minutes.

The priest finally came down the aisle and again tried to jump into the aisle to invite him over to dinner—AGAIN!

He came over, held her hand and she started yelling. This yelling is a new behavior. I don’t think it’s her intention to scream at people………………… dad, says he’s noticed this new behavior as well. The yelling. It’s difficult. She yells out people’s names in the middle of mass, “Hola, mi Connie! Hola, mi Maria!” During Communion, she yells at the priest to come to dinner………………………………………. “Mi esposo la fruta mi esposo y yo queremos que tu la fruta en la FRUTA CON NOSOTROS!” She holds up the line for a good minute before taking in the Body of Christ.

AMEN MOM! AMEN! Move along.

“AMEN!!!!!”

Finally.

Physically restraining your own mother takes a toll, I think, on you spirit. I mean, seriously? Who does that? Maybe in some movie where the mother lost her beloved child and she’s about to attack the person who did it, then you hold her back. But in my case, it’s another cut on my soul. Not a stab, but a slice. Another slice. I have about 1,000 of them. Slice. Scab. Slice. Scab. Slice. Scab.

After the whole Communion situation, I sat in our pew (and like a good Catholic mother, I made her get on her knees for the confessing of sins part, because she totally gets it—not at all. Bad habits die very hard) and started to cry.

I don’t cry very often over this mess. Not anymore. So when I do, it’s a result of emotion overload. I’m angry, embarrassed, hurt, resentful, tired and frustrated that I can’t make her behave like a normal human being.

I can’t control her.

She will not listen to me. Instead, she laughs at me.

My church friend Teresa came over and sat next to me. She held my hand. My mom, no longer able to sympathize, empathize or any-thize, was just looking around for her friends and rehearsing what she was going to say to the priest AGAIN.

After this, we went to Target. I bought her hotpink nail polish, went home and painted her nails.

>>Flick pick by Alice

My mom does not remember the Bolmaro family. Barbara remembers her.

Here are her memories of my mom:

I remember a woman who welcomed us with immense generosity into her life. Who was always smiling and was very polite. Who was amused by my city-kid distrust of people. I remember a woman who helped my mother get a job. Who cared for my grandparents qhen they came to visit, who played “canasta” with us. She was always very kind and generous and I´ll always remember her fondly.

Today is her 73rd birthday.

She doesn’t know it’s her birthday.

Happy Birthday Mommy.

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

]]> http://mydementedmom.com/2010/02/22/boy-meets-mom/feed/ 4 Kathy Ritchie 840482351_5dcd874ccc_o http://mydementedmom.com/2009/11/08/stepping-outside-the-realm-of-reality/ http://mydementedmom.com/2009/11/08/stepping-outside-the-realm-of-reality/#comments Sun, 08 Nov 2009 06:21:21 +0000 Kathy Ritchie http://mydementedmom.wordpress.com/?p=448 Continue reading →]]> …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.)

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

Nearly six months later, and I feel like a reactive child. I don’t know who I am. I feel insecure about my life-choices. I cannot say what I want or need to make me happy. I am a disappointment. I feel lost and utterly alone. I am ANGRY. My breaking point came Friday night. Nothing was satisfying me. Not 30 Rock, not a book, not the heat, nothing.

The only thing that came naturally to me were my tears… it was the first time in a very long time that I just balled.

I am finding it increasingly difficult to do anything. I don’t want to do anything. I am completely uninspired. Unfortunately, no one will rescue me. I am my own savior. Fuck. I can’t escape myself no matter how much I want to run away.

You know what’s wrong with you, Miss Whoever-you-are? You’re chicken, you’ve got no guts. You’re afraid to stick out your chin and say, “Okay, life’s a fact, people do fall in love, people do belong to each other, because that’s the only chance anybody’s got for real happiness.” You call yourself a free spirit, a “wild thing,” and you’re terrified somebody’s gonna stick you in a cage. Well baby, you’re already in that cage. You built it yourself. And it’s not bounded in the west by Tulip, Texas, or in the east by Somali-land. It’s wherever you go. Because no matter where you run, you just end up running into yourself. ~ Paul Varjack, Breakfast at Tiffany’s:

I keep running into myself no matter what I do. I need to be alone. I know it’s selfish and terrible, but I can’t do more for her (or anyone else) if I can get my head on straight.

I am tired.

I am angry.

Reactive.

Illogical.

My actions and inability to feel in control makes me want to puke in my mouth.

I hate not feeling in charge of my life.

I am being driven to the brink by a disease whose face resembles my own mom’s.

How do you reconcile that love and that hate?

Who is she?

I don’t remember much of my mom before her disease took over her mind and body. I have been asking friend’s to tell me who she is and what she was like. This is my new series: “Who Is She?”

Below, my girlfriend Chanette from high school (now a mom and wife) shares her memories of my the woman I call mom:

“I will always remember Kathy’s mom as the devoted Catholic who was sweet, soft spoken and cared for others. As teenagers I loved to go over to Kathy’s house because it was so different from the environment that I lived in. I had 5 brothers and sisters and never any “quiet” time. Going over to Kathy’s house was like going to Disneyland for me. I always envied that she was an only child who received her parents undivided attention, had her own room and all the “quiet time” that her little heart desired! Whenever I would be over at Kathy’s house studying or even just hanging out her mom would “stop by” wherever we were to see if we needed anything to drink or eat. Like any teenage daughter Kathy would grumble that we were fine and busy. Kathy’s mom seemed to take no offense to her teen daughter’s response and would come back by 15 minutes later to ask the same thing. I thought, “Wow, you are so lucky to have a mom who dotes on you like that.”

Not saying my mother was any less. The fact was that my mother had five other kids vying for her attention besides me and so no one got the doting that most only children receive. None the less, I was envious of Kathy at the time.

To me, Kathy’s parents were always so different in their personalities. Her father was more of the quiet, reserved type that I was always afraid of disturbing when I was in their home visiting. Whereas her mother just made you feel welcome from the time that you set foot into their home. She was a very open and warm hearted woman who made you feel comfortable. Always asking me how my family was and how school was going showed me how much she cared. My grandmother attends the same church as Kathy’s mother and was on the prayer line with her for several years. When I asked my grandmother what she remembered about Kathy’s mother the first thing she said was “she always had a smile on her face and was friendly to everyone she met.”

As I have grown into an adult I have learned to appreciate my large family for what they are and what they provide me with, a huge support system. Yes, I never had my own room growing up and yes, there was never a quiet moment in our house other than the middle of the night. But if my mother was diagnosed with dementia or any other disease I would not have to deal with it by myself. It saddens me to see Kathy going through this alone. She has no one else other than her father to share the heartache of losing her mother emotionally with, which I know is hard for her. Hopefully one day, Kathy will remember the wonderful woman that her mother once was and all of the good times that she shared with her.”

IMAGES-
>>Caged: http://www.flickr.com/photos/36041246@N00/
>>klaus kinski saviour III: http://www.flickr.com/photos/annamalina/