Date My Dad or Bless the Caregiver…

I’ve been on this road since I was 28 or so. I think. I’m 34 now. I can’t really imagine my life without this disease. Even though my mother is the one who’s sick, her dementia affects me too. Although I’m at a point now where I don’t miss what could have been (rather, it doesn’t haunt me like it used to)—I don’t fantasize about having girly-talk-filled-lunches with my mom or meeting up for pedicures anymore—these days, I worry a lot about my dad.

My dad is a full-time caregiver. He retired at 63 to take on this not-so-jazzy-job………………. he couldn’t take the stress of not know what would happen when he we went to work each day. These days, he spends his days tending to his toddler-wife. He bathes her, he feeds her, he makes sure she doesn’t drink the soap (or any other kind of liquid cleaner), he takes her for walks, he takes her to the doctor, he does her laundry and he cleans up after her………………………………………… he does whatever she needs.

He rarely complains.

Sure, he has his moments…………….. I can tell when he’s sad or angry and it breaks my heart. I can only do so much for him. But I can’t help but wish he had some companionship. Sorry, a demented mother who uses a handful of repetitive phrases to communicate does not count. Somedays, I wish my dad could meet someone nice and pretty too………………………….. because, I think someone nice and pretty would be lovely. Maybe. I hope. Someone who understands and supports his situation.

My mom is at a point now where she cannot play wife.

My dad has no one to talk to. I’m his only friend I think—but I’m also his daughter.

Mainstream dementia or what you see on TV isn’t what you see in real life.

I hate news stories about Alzheimer’s or dementia. They often feel sugar-coated. You hear the afflicted man or woman—still incredibly lucid—talking about how they are savoring every remaining moment, every precious memory. Then, they look into their partner’s eyes—they both fight back the tears.

It’s tragic, but that’s not always the reality.

My mother and father never held hands as they looked lovingly into each other’s eyes when as the doctor informed them that she had Alzheimer’s in 2006 (a misdiagnosis as it turns out…………………).

In fact, my mother never seemed to comprehend that she had any kind of brain disorder. She just drifted away year after year—her essence lost in the fog.

The years leading up to the present moment were filled with every emotion……………………… denial, anger, sadness, rage, frustration, anger, anger, resentment, jealousy, despair, desperation, hate, contempt, denial……………………..

There was no tender hand-holding.

The grotesque reality is avoided: the behaviors, the emotional toll on family, the loneliness……………………. the deep, dark pit that often traps caregivers like my dad.

So here’s the question????????????????????????????? Is it really fair for my dad to go on without a new partner because his wife is still alive? And when is it OK for the caregiver to let go of the past and live?

Caring for a demented loved one is a prison sentence. You are bound to your loved on because it is the right thing to do…………………….as humans, we must care for our family. We must love them and respect them. We must do what we can do to make their life as comfortable as possible……………………….. and as a society, we demand it. You are noble if you remain ever faithful to your demented mate. You’re loyal. You’re remarkable. You’re heroic. Society smiles upon you. We give you our seal of approval because you are doing what no one really wants to do………………………………………………

But what if your loved one’s mind—that part of our grey matter that makes us who we are, gives us our personality, our energy, our vibrancy, that “thing” that makes you you—has already crossed over?

Can you be a caregiver, a good caregiver and date?

I want my dad to date. There, I said it. I want my dad to be happy. I want him to meet someone who treats my mother with love and respect. I want someone who understands that this is not a conventional or convenient relationship. Yes, my dad comes with baggage, a demented and dying wife and a 34-year-old, but doesn’t he deserve some kind of a happy ending too?

>>Flickr pic by Funky 64

Gag Reflex

Good news. I discovered something new about myself. Poop makes me gag.

I’m OK with cat poop and I’ve never really experienced baby poop—although, I imagine that mothers have some built-in mechanism to prevent them from vomiting all over their off-spring—but my mother’s poop makes me gag.

In the last month or so, I’ve dealt with my mom pooping her pants on more than one occasion. It’s messy. Poop just gets everywhere. It smells. Seeing it caked on her underwear makes me want to run. Gag. Swallow. I hate it. Of course, I can’t. I try to help her get clean, passing along wet paper towels. Unrolling more toilet paper. She hands me back her dirty underwear and used paper towels. Gag. Swallow. She needs more paper towels. Gag. How did poop get on the wall? Gag. Swallow. She’s mostly cleaned up. I hope it didn’t get on your sleeve. That’ll have to do until we get home or I get you diapers or something. Gag. Good. You don’t smell too bad.

Oh, Shit. My car seat smells like poop.

FACT. Human poop is really hard to clean up once it soaks through.

My mom has another nasty poop-related habit. She insists on wiping with a bath towel when she’s home. This would be fine if she could flush it. Instead, she hangs the poop covered towel back on the towel rank. Gag. Swallow. I’ve tried to show her how to use toilet paper. She’s not that into it. Gag. Swallow. When she hangs her poop covered towel back on the rack, I have to wait until she’s finished to toss it in the wash. My dad does the same. Coming in after to throw the towel away or in the wash. Gag. Gag. Gag. I remember the first time I witnessed the towel in action. My dad and I were sitting on the bed talking about it. He looked tragically defeated.

Like a soldier being told that they can’t come home.

 

Flickr pic by Scott MacLeod Liddle

Communion for the Demented. Maybe Not.

Too demented to receive Communion?

Possibly.

Last Sunday, I briefly chatted with our priest about Communion…. the holy rite that makes us Catholics, well Catholic. Or to be more precise, the fact that we believe the bread and wine actually transforms (transubstantiated) into the body and blood of the big J-C.

My mother used to be what they call, a Eucharistic Minister—she would give Communion to churchgoers and the sick. Now, she’s sick and no one comes to our house. I’ve called about this. I guess I could try harder. I’ve sort of given up on this… mostly because she still takes Communion on Sundays. The problem, however, is that she not only takes Communions, she holds up the line trying to talk (actually, she rambles—LA FRUTA, LA FRUTA, MI ESPOSO, DESPIERTA AMERICA) to her boyfriend the priest……………….. then, making matters slightly worse, she chugs the wine—and backwashes—and refuses to give back the chalice (so I have to yank it out of her hands)……………. she likes the blood of christ…. it’s Berringer, White Zin. Nice legs.

This has caused some commotion and so when I talked to our priest about this in hopes of making the process less loud and messy, he told me that we should start “weaning” her off Communion. Apparently, one of the prerequisites of receiving Holy Communion is that you understand what you are doing, that you are consuming the body and blood of Jesus Christ. She obviously doesn’t, and therefore should not receive the most sacred of rituals within our church.

This is frustrating. My mom LOVES to get her Communion—despite not having the most pure motives (she wants to chat up her priest and she likes wine)……………….. but is it really up to mortal men to decide whether she can consume the body and blood?

{Long siiiiiiiiiiiiggggggghhhhhh, eye roll}

Seriously. I mean, I don’t have the deepest connection to Our Father, but I think God will cut my mother some slack in this situation (Preemptive apology: I am very sorry Dear God that my mom chews your son up and then chugs his blood, often spilling it on herself), especially since he is the one who made my mom sick—if you believe “that there’s one all-powerful Force controlling everything.”

Some quick Google searches on the subject, and the reviews are mixed.

One person on a message board called it “inappropriate,” another said that if the individual knows that the host is “special,” which I think my mom does, then it’s OK.

For me, I want her to have Communion because my mom was (and still is in her own way) one the most devout women I’ve ever encountered. I used to think her love for God was stronger than her love for me…………………..

So, for me, as her only daughter (who tried to get ex-communicated to avoid going to catechism class—it didn’t work—and now recites the prayers in Spanish so she can follow along with me—I intend to de-raise a good Catholic mother), all I want is for her to be able to receive the body and blood as she’s always done. I won’t fight the Church on the matter and I suppose we’ll see how things go……….. he wants to slowly limit her by just giving her the host (no wine)………………….

Holy Communion gives her joy and she’s often said that it makes her feel better……………………. the placebo effect of Christ.


Happy Birthday Gaita

My mom turns 74 today.

She has no idea that today’s her birthday.

She doesn’t even know I’m coming over to ring in her big 7-4.

I bought her hot pink nail polish, a pair of earrings and Almond Joy.

Happy Birthday mommy.

Ramblings of a Demented Daughter… Floating Thoughts

I don’t know if I’m a good daughter…. My two cousins and aunt (mom’s sister and her two nephews)  blasted me a few months ago because of the name of the blog… My DEMENTED Mom. The word demented when translated into Spanish is apparently a not very kind word. I can’t say much about that. I didn’t know it was a wretched word in Spanish.

Alas, my mother tongue is English, the blog is in English and according to Merriam-Webster, DEMENTED has two meanings:

1. mad, insane
2. suffering from or exhibiting cognitive dementia

My mother fits both definitions quite nicely. The assault on my use of the word was so incredibly hurtful. They attacked me, the blog and from my point of view, my role as her daughter. I felt like such a horrible person, a rancid daughter, clumsy, baroquely grotesque, wretched and positively cheap……………..I knew it was a strong word……. but the name of my blog was never meant to disparage my mom or her memory………. she is demented. She is sometimes mad. She does suffer from cognitive dementia.

I love my mom.

I miss my mom.

This morning I woke up wishing that I had started wearing a purse when I was younger—when she told me too. Silly, random pre-dawn, pre-caffeinated thought. She used to tell me that I should wear a purse. That a girl my age should wear purse. I hated purses then (love ’em now), but I wish I just did what she wanted me to do. It would have made her happy.

I no longer have any relationship with these individuals—there’s no point. That and I’m stubborn but mostly I don’t think there is a reason to resume relations with people who just don’t get it. Who never will. I don’t know if I’m sad about that…… maybe more disappointed…………. but for me, family goes beyond blood lines. Natalie.

Cheryl.

Lindsay.

Petra.

And of course, my Jon.

New topic.

I talked to Sandra Gonzalez at the Alzheimer’s Associate Desert Southwest Chapter. My mom hates baths. Sandra was sharing some tips for making bath time a little easier…. Play soothing music. Prepare her bath before she gets near the bathroom (apparently the noise may be amplified for those suffering from dementia). My mom screams. She yells, PORQUE ME PONES? PORQUE ME PONES?

That’s dementia for, WHY ARE YOU DOING THIS TO ME? YOU KNOW I HATE WATER. PUT MY CLOTHES BACK ON. I SWEAR TO GOD IF YOU PUT ME IN THE WATER I’M GOING TO SCREAM. YOU’RE REALLY PISSING ME OFF.

We also talked about communication…………. communicating with my mom, understanding her and talking to her in her own language. My mom has less than a handful of phrases that she uses and repeats over and over….. I use the same phrases to talk to her.

Oddly, she understands me. No idea what she thinks I’m saying, but she responds….. in her own demented language. I am in her world. Every time I visit my mom, I step into her world, I engage her……….. I “allow” her to shop lift………. I listen to her. I paint her nails hot pink. I clip her finger and toe nails. I dress her sometimes—something I actually like to do……. granted she ended up with a pair of Converse One Stars, but she likes them and I own the same pair (I like it when we match…………… it’s my thing).

 

Tomorrow, March 25, is my mom’s birthday. She’ll be 73.

 

>>Flickr pic from Mariel B

Alzheimer’s by the Numbers… You Seriously Should Watch This Or Time to Pay the Piper

Mater, Mommy, Ma, Ama, Madre, Mueter, Em, Mami, Ummi, Mamma… My Mom



Oops

My mom pooped her pants.

Actually, it was a tiny accident. She can control her bowels (and her bladder too)…………….. you just have to get her to a bathroom when she has to go—cause let’s face it: When you gots to go, you gots to go. I tried. There was a line. I rushed her to another bathroom. I failed. It was a smudge. A large-ish smudge.

Although, this wasn’t a huge mess/misstep/or even a big deal……… this accident got me thinking (well, I’ve thought about it, but I try to repress it)…………. what will happen when accidents become every day occurrences?

What will happen when she can’t wipe herself?

Wiping is such a funny, mostly strange rite of passage-slash-human experience… when you’re able to wipe on your own, you’re a big kid. When you can no longer perform this act solo, you’re an invalid.

As the child of a parent who will eventually have to be wiped by another human being, I really don’t know what to make of it. I mean, I’m writing about it, but I don’t have any profound words to share nor have I made a startling realization about life and its meaning, etc, etc, etc, blah, blah, blah…….

I guess all I can say is that at that point, we’ll likely have to place my mom in a facility, and that scares the shit out of me. We’ve been down that road……. it was brutal, emotional, messy and grotesque. I sincerely hope to never have to relive that horrendous experience ever again…………………… I hope she never has to relive that again.

Right now, my mom knows where HOME is.

So while the woman may not know my name, her husband’s name, or what year it is, and she may use the phrase, “Despierta America” to describe everything from the clouds in the sky to her most favorite food in the world (french fries), my mother knows exactly where her secret (not really) stash of apple juice is hidden—on her bathroom counter (don’t ask) in her house.

 

>>Flickr pic by funkomavintage

She Loves Hot Pink

Full Circle Or 73 going on 3

Something that I think everyone who has a parent with dementia can relate to is this idea of life coming full circle. Our parents are growing down, they’re regressing (my mom is 73 going on 3… I believe we are in the terrible demented 2s still) and it’s one of the more frustrating facets of any dementia: The role reversal.

I talk about this theme a lot in the blog because I believe this is one of those really tough things every adult child faces—and it truly, truly sucks.

With my mom, this has been especially true, I think because of her kind of dementia—the frontotemporal stuff eats away at the part of your brain that keeps you from behaving exactly like a tot. In public places. Throwing tantrums. Or, in our case, spitting and stealing stuff……………….. my mom has no concept of right or wrong, good or bad, or sometimes, yes or no. She does what she wants, like a child, but doesn’t have the ability to learn or retain important, very useful, information—like, for instance, if you drink soap (as she does), it does not taste good so you skip the soap. Mom still drinks the soap. Her behaviors and plain inability to retain new information has forced us to take measures that are usually reserved for mini-humans.

We baby proof………………………………….

Dad has taken to locking the fridge with a giant chain and lock (remember, she’s stronger than me so we can’t just use plastic locks like you would for a 2 year old). Certain electrical outlets have a reset button so they don’t generate a current………… kitchen equipment has been put away (mom took the grease from the fry daddy and poured it around the pool to “feed her birds”), and I’ve taken to shopping in the baby aisle for bath soap, toothpaste, wipes and other kid-friendly goods because it just makes sense……………………………… she hates water, let’s throw in Dora the Explorer bubble soap and see if that helps. She’s not into washing her hands so let’s get Johnson & Johnson wipes that disinfect and smell nice. I have a theory that she’s not really brushing her teeth, so lets get her something that tastes good AND fights cavities.

When the parent becomes the child and the child the parent…………… well, it has a way of messing you up. You feel abandoned in a way, because no matter how old you are, sometimes you just want your parent. This disease has robbed me of my mom. I’ll probably never get over that. I can’t imagine how, really………………….. even when she’s gone and it’s behind us; the idea that I lost my mom starting in my late 20s is an emotional dagger……………………………………. I sometimes wonder if my mom would have helped steer me in other, maybe better directions, if she were mentally here for me. I wonder how our relationship would have evolved as I got older….. from mother/daughter to a beautiful friendship between adults. I have no idea.

What I do know is that I have a profound appreciation for tear-free shampoo.

Flickr pic from StarMama

Momentos OR Finding the Funny

When it comes to all (or most) things miserable in life, you have 2 choices: You can stew in self-pity or laugh. When it comes to all things dementia, indulging in moments of self-pity are absolutely allowed, just avoid spending too much time in the pot—you’ll just become a soggy, useless mess to everybody around you, including your demented loved one.

Laughter and humor have been two spectacular coping tools—without a good laugh. This past weekend was offered up a few fabulous funny gems that I wanted to share…………. because remember, like Huck Finn author Mark Twain said, “The human race has only one really effective weapon and that is laughter.”

And Target.

The set up- My cousin Anita flew into town for a quick visit……………… Anita hadn’t seen mom in almost 2 years, so we weren’t really sure if she would recognize her……… despite my mother’s phone calls to her niece………….unfortunately, when Anita walked over to give her a hug, mom had no idea who she was. She stood there. Smiled. And mumbled her only remaining English phrase that she uses when she has no idea what the hell is going on: “Oh, I see.” This is not the funny part.

This is my set up for funny.

Anita, took it in gracious stride……………………..

OK, you know what cures a sad hello? A trip to Target. So we go. Mom has a thing for Starbucks Vanilla Frapps. The woman loves them. Well, actually, she hates them until I make her take a sip. Here’s what amuses me about her…………….. and Anita was eye-witness to her funny behavior…………………………….she sips, then bitches and hands the cup back. A minute later she takes the cup back from me and drinks it…………….. She then gives it back and complains that it’s not good for her; that it doesn’t make her feel well (9 months ago, a Frapp was “beautiful” and made her feel good—fickle, fickle). I take it back. I leave it in the cart, wander off and turn around to see mom chugging her Frapp. After this back and forth, she finally starts gushing about how good it is. She proceeds to suck the whole thing down. She does not share. This is a typical mom-ism. She doesn’t seem to like anything—“No. No. No. No. No. No me gusta. No me gusta.” This no-no-no includes pretty much everything…………… we wandered through the baby section looking at the sweat onesies for another cousin and mom didn’t like anything. No. No. No. Anita showed her a sweater that she pulled off the rack. No. No. No. (this coming from a woman who wears the same thing everyday, or at least tries to)……………. Of course, you can’t argue, so you either throw in in the cart (and then she tries to take it out of the cart) or you hang it back up. Drink your Frappuccino, please!

Funny also happens around the check-out area…. Mom, turns out, likes to shoplift. A hilariously new development that I forgot to tell Anita about. So we are standing in line and mom, not realizing that I had already paid for her Frappuccino, takes her cup and tried to hide it as we’re checking out……………….. Anita’s face was worth 1000 Frapps! Realizing that my mom who we call Gaita (a childhood nickname) was walking past the checkout with her Starbucks cup slightly hidden made us both crack-up……………………………… Ah, Gaita. This actually worked out a little better for me because since she was so focused on stealing her already paid for drink, I could actually pay for—and not wrestle product like her hot pink nail polish away from her………………………….. yes, polish she is planning on stealing. Sometimes I just let her toss it into my bag and when she’s not looking I’ll pull it out and pay. It’s a win-win.

Funny again revealed itself the next day—and this is my favorite—when we took mom for a walk. Gaita still had not recognized Anita…………………………….. In fact, mom seemed sort of stand-offish and almost a little mean with her at times. As we walked, I would tell mom that the woman next to her was Anita, her niece…………….. Gaita would not even look at her. Finally, we stopped and again I said, “Gaita, this is your niece Anita…….” Mom looked over Anita’s shoulder and looked at the cactus, “Oh, I see.” Anita the cactus. She finally turned to look at Anita the niece and touched her curly hair—mom wanted to know why she had that hair……………………… the conclusion, mom didn’t seem to like Anita’s hair. Poor Anita. I just laughed……………… and laughed. And laughed. Anita my cactus-cousin. La pobre. She took it all in stride………………… patient she is.

And then Jon, my boyfriend, came over…………………………… Mom hadn’t so much touched Anita in 2 days. Her niece. Her sister’s daughter. When Jon arrived for dinner that night, Gaita seemed very happy and hugged him and told him that she loved him very much. Anita, who has a great sense of humor, just laughed…………………………… Jon got more L-O-V-E in the first 5 minutes he was at the house…………………………………… Pobre prima Anita. Conclusion: Anita is a girl. Mom seems to like the fellas.

Covered in the Blood of Christ

Sundays are one of two things………… they are either filled with yelling, behaviors, and other inappropriate acts or they are filled with one of the above—frankly, i’ll take her spitting versus interrupting Communion or her grabbing young children by the arm and yelling, “te quiero mucho!! te quiero mucho!!”

Totally not embarrassed. Great. Being laughed at by tween churchgoers. Unbelievable…. will I ever escape the being-laughed-at phase… ever?

And while I (and most of the congregation, minus those damn tweens) have come to accept that her behaviors are the result of her disease, it’s tough. I’ve sat in our pew after one of her fits and just cried. Somedays, it’s simply too much to digest in a single sitting……….. the horrors of this grotesque disease.

I play tough on TV. Real life is another story.

Today was another one of those days. Although I managed to remain composed……… this time, I had to ask the question (again……… can’t bring myself to actually do it): Should I stop taking her t0 church?

The bruhaha started not after mom yelled at Padre Andres as he walked down the aisle to the alter as Mass started; nor did it occur as she yelled his name as he walked towards the front of the alter 20 minutes or so later; it didn’t occur when she held up the Communion line for over a minute inviting him to dinner……………. it happened when she grabbed the chalice containing the wine and started to chug it. The woman serving the blessed Koolaid tried to take it back from my mother the lush, and mom, not having her fill, grabbed it back only to spill and splash on herself. Mom then went over to her friend, another woman serving wine, and chugged just a little extra—again grabbing the chalice with enough force that is splashed on her, the floor and a little on me.

I can’t be angry with her….. and while I try to explain that what just transpired is not good, my words go in one ear and out the other. Or worse yet, she laughs at me.

Nice. Mom and the tweens should go shopping at Hot Topic together.

Today I told her that I was sad that she took the wine like that. Unresponsive.

Times like these, I wonder, should I stop taking her? Is it worth it. She interrupts the service and doesn’t really understand what is going on. She remember parts of certain prayers—the ones you can never really forget if you were raised Catholic, Our Father, Hail Mary, etc….but church for her isn’t about the service, it’s about a man. A priest. So I wonder, should she continue to attend an event that causes a tremendous amount of stress and anxiety…. and now a wet, bloody mess………….

I don’t know.

What I know………….. she looks forward to Sundays. She can figure out the day of week it is based on certain TV shows. She loves Sundays. It’s a huge deal. She dresses up and even applies a thick, powdery coat of blush all over her face. Yes, I said blush. All over her face. It’s her day. It’s our day. It’s what we do. People know us. They no longer sit in our seat………………..(I like to think it’s out of respect, but mom will yell if you sit in her pew, so people probably just know better by now) but then I think about the stares and the older kids who laugh at us when she acts out—she is that crazy old lady.

I don’t know.

I suppose I’ll keep going until someone says something to me. I hold out hope that she will eventually calm down. She’s on new medication to help with the behaviors, and though she’s been on them for over a month now, I keep thinking, “maybe today’s the day….. maybe today she’ll be normal.”

Flicker pic by drp

2-3 Years to Live?

my demented mom

When dad said mom has maybe 2-3 years to live, I didn’t feel much. I knew how I was supposed to react—at least when I’m around people other than my dad—with a degree of horror and sadness. People, I suppose have an emotional expectation of you—they expect you (or need you) to exhibit a particular range of feeling, regardless if you actually feel it……….. and if you don’t, you must be some beastly human.

I’ve just learned that sometimes you have to give people what they want………………….. I know what is “appropriate,” and sometimes in this vile game of life, you have to put out, so others will feel better.

Dementia is not for the faint of heart.

Confession time…………….. so hearing that my mom possibly-maybe-no-one-really-knows-for-sure has 2-3 years I’ll tell you what I really felt……………………………….RELIEF. Relief because in my mind, I had been thinking 5-10 years and I could deal with that. I accepted that time frame; digested, accepted, knew that I was in it for the long haul. Knew that a part of my life would be defined by my mother. I knew this. I was cool with this (or as cool as one can be)…………………………………………….

Learning that we’re maybe looking at 2-3 years, well, I felt hopeful. My mom lives a very sheltered life. The toll of her disease seems to be slowly destroying my dad. My mom is not the woman she once was. She is a child. Her vocabulary has been reduced to two words (give or take), “la fruta” and “Despierta America.” Her favorite Spanish TV show……. well, her favorite Spanish morning show…. “Despierta America” is new thing, but still………… try talking to a person who speaks only in “Despierta America” with “la fruta” woven in for good measure.

The disease has taken away my mom. It has made mush of her brain. She can’t function without adult supervision. She can’t leave the house unless she is accompanied by myself or my dad. She can’t drive. She can’t cook. She can’t read. She can’t write. She can’t work. She lives in a void. She does not remember you. She does not know that she has a sister or a gaggle of nieces, nephews, great-nieces-and-nephews and now a great-great nephew.

We have been told that we shouldn’t take her out too much because new places (new to her) can cause her to become anxious and ultimately became even more unruly. The excitement of Fry’s supermarket is just too much for her. Unfortunately, this includes her highlight of the week: Church. Mom becomes incredibly anxious to see the priest……….. She yells, she runs into the aisle, she disrupts Communion………….. I have felt her heart rate skyrocket as a result of just trying to get his attention in the middle of mass. I think mine does the same……….. holding back a flailing demented woman is just not easy—especially when she’s stronger than you are.

Another 5-10 years of this versus another 2-3 years………………….

Soak that in for a moment.

 

>>Flickr pic by Stuck in Customs

 

 

My cousin described my mom to me as, “funny and generous.” I don’t remember that person, but I believe her. People love  (or loved) my mom.

A Little Something Called Frontotemporal Dementia

I’ve written nothing about this disorder. I don’t think I’ve ever uttered the words, FRONTOTEMPORAL DEMENTIA. This kind of dementia never really crossed my mind. For so long, we were told that mom probably had mixed dementia—Alzheimer’s disease and Vascular Dementia. I accepted that “diagnosis.” I suppose I evan began to define my mom as that. But as her behaviors became increasingly worse, I did start to wonder if there was something else going on…. even dad thought there was something else going on. We read about Alzheimer’s and VD and in the beginning she fit the mold…….. then she shattered the mold.

Now we have an answer. Frontotemporal Dementia.

While I’m relieved to finally know what exactly is slowly gnawing away at her gray matter, I think this journey would be a lot easier if she actually had Alzheimer’s disease. Maybe not. Everyone is different I suppose.

Below is an interview sent to me by the incredibly amazing people at Banner Alzheimer’s Institute about FTD, which aired on our NPR station here in Phoenix, KJZZ. Hope you’ll take a listen and learn more about this lesser known dementia.

DEMENTIA THAT’S NEITHER ALZHEIMER’S NOR EASY

It’s All About Me And What Could Have Been If It Weren’t For You

I try hard not to dwell on what could have been. It’s an easy enough trap to fall into for someone like me who already suffers from “future living disorder”… I worry about what may happen, what could happen and what I hope happens, instead of focusing on the here and now. There is no cure for this except forcing myself to stay grounded—in one place. Phoenix. With my family. In a 748 square foot studio. With very high ceilings so I don’t feel “trapped.” That’s my other ailment, “trapiditis” or the fear of being stuck. I usually move to remedy that, except this time I can’t (or won’t).

Since I can’t jump ahead into my non-existent future, I’ve been looking back—at what could have been. So what’s with all the time travel? I guess the fact that everyone is having babies. Baby girls (OK, there’s one boy coming sometime next year). Everyone. Seriously. It seems each week, I’m hearing that someone is having a girl and they’re all due around February or March… around my birthday (with the exception of one baby girl due early next year—congrats Nedra!)

I always wanted kids. I dreamed of a large family, probably because I came from a family of three—2 parents and me. I remember thinking at one point that I wanted to be a mom by 26. I’m 33. Totally missed that boat. When I was 25, I thought I had met the one. We talked about having kids. A boy and a girl. Perfect. We even named them, but then that’s what you do when you’re smitten with one another, contemplating the perfect life together. Perfect.

Two years later, things had changed and he no longer wanted children. I convinced myself that I didn’t either. And as my mother’s disease became all too evident, it just seemed like having kids would be too much… even if we were going in that direction, but we weren’t so it served as proof that I had made the right decision. No kids. Besides, how could I care for a baby and help my dad with my mom? What if my mom hugged my baby too hard and killed it? What if my mom lost my baby? What if my mom dropped or even microwaved my baby, like she mircrowaves everything else!?

I can’t even cope with my mom’s disease, how could I possibly deal with a child?

That’s what I tell myself. To this very day. Of course, I’m no longer with the one and so (technically) the baby door is once again open, well cracked open.

Or not. ENTER the present moment (stage left)

I’m 33. Tick tock.

I’m not married.

I can’t afford a baby.

I have no help in the form of family, except my dad who is busy de-raising my mom.

Slightly ajar just got slammed.

So I don’t think about birthing babies and I try to beat it into my subconscious that a child would not be a good idea. I think it’s working. I once even went to a psychic and asked her about children—she said she doesn’t see kids in my future. More evidence. It’s literally not in the cards.

Fast Forward. Present moment. On the laptop. Typing. And I can honestly say, I don’t know if I want a baby anymore. I’m TBD.

Instead, what I think about is what could have been. Maybe I should have ended my relationship when he said he didn’t want kids. Maybe I should have given him an ultimatum—I want kids. It’s me and our two non-existent children or nothing.

Maybe if I had, I would be a parent now. Maybe I would be having my second or third baby—creating a that large family of my dreams in a beautiful house with a large back yard and a partner that teaches our kids how to play some kind of sport or something.

Maybe I would not be sitting here alone on my Macy’s sofa thinking about what could have been and feeling a tremendous sense of anger and frustration at him, at my mother, at myself, at the hand I’ve been dealt.

>>Flickr pic by gabi_menashe