Mom Gets Kick Out; God Laughs

Photo by Meredith Farmer

I had so many noble ideas for this week’s post….. I was feeling good. I started thinking about how this — life — was some sort of test, a means of proving one’s ability to persevere and not succumb to the easy-outs; because by staying the course, we’ll somehow achieve spiritual bonus points. I was arrogant, I suppose…….. I thought I’d done so well, not losing it that is……………..I mean, I know people who were tumbling into a deep pit of depression and they had nothing significant going on their life — other than too much time to think………………….. I was proud of myself. I thought we were going to be OK for at least the rest of the month until tonight, when I was informed that my mother had 30 days to pack her stuff and leave the home.

Mom yells. She spits. She does have a bit of a poopy reputation.

Other residents have been complaining. Complaining to their families. I suppose it boils down to money — why risk losing one or two relatively easy residents versus my mother? She has never been easy to deal with. Her disease is especially trying……….. I would probably do the same. Nursing home care is a business. A big business that’s only going to boom over time. I got word at 5:00 p.m. I started calling facilities as soon as I hung up the phone. Unfortunately, I am limited in terms of where I can place her. Her behaviors, the result of frontotemporal dementia, mean I can’t place her just anywhere………… I need to find a behavioral unit. And those are few and far between here…………… but she’s not violent, so I risk placing her in a home where she could be the victim. My mom’s behaviors are of the benign variety……………. she yells, she spits, she gets into her poop from time to time……………… but they are behaviors and it seems things are pretty black and white when it comes to nursing homes………………………… people do not want to deal with behaviors.

So here I am. I have no idea how my father is going to take this. I dread the conversation; I just don’t know. But there’s no one else………………………..

I saw a shaman once who told me that the source of my mother’s disease (and my own) could be the result of an agreement we made in another life (I know, what was I thinking? Why would I agree to such a dumb pact?)……………. I can’t help but think about that…………. did I do something horribly wrong. Is this my punishment………….. in this lifetime? Or was I perhaps some saint who agreed to participate in this life with my mother, who, clearly, was also a saint in order to voluntarily go through this.

Or, is this the act of God; a vengeful God……………. one who is enjoying this…………… watching his puppets suffer.

(I don’t believe in a loving God. That makes no sense once you step back and ponder all the suffering going on in the world).

Or maybe this is Hell. People experiencing varying degrees of Hell, but Hell……..

Whatever this is, I am less fearful of death………………. Sometimes, I think, well, at least all of this will be over with and death is probably less stressful…………….. It’s terribly tragic way to think. I know that.

Last week, I was accused of wanting to sedate my mother by a psych nurse practitioner’s partner. My mother was grinding her teeth so badly, you could hear it if you were standing 3 feet away from her. It pained me. It kept me up at night. I asked the nurse practitioner if she could do something; increase her medication; something; anything……………. she dropped my mother, said I should find someone who shares my “philosophy” of caregiving and then that response by her colleague. Talk about knife in gut…………. I took mom back to Banner Alzheimer’s Institute that same week……………….. they looked at what the nurse practitioner was giving her……………………….. it was wrong; they added and increased her meds.

They also removed the Robitusin PM that was being given for her cough (cough? what cough? I called the home…. oh, she has a cough once in a while…. it’s as needed.). 

Yeah. A cough.

Then, one week later, we get the boot. I don’t know how much more I can take…………. I can’t even imagine what “normal” feels like. The glass is always half empty — there’s not point in being optimistic about things because they simply do not work out when it comes to this disease……………………

I always wanted children, I used to day dream about being a mom, I had baby names picked out, I thought about outfits and how I would dress my kids………………..and now I can’t even see that as a possibility……………… it’s just slipping away. I just can’t fathom doing all of this and raising a baby. I have my hands full with two parents, a job, a relationship, friendships (I feel like I suck at all of the above most days)………………

And I’m afraid that God will continue to punish me. I truly believe that he will give me a child that has some terrible disease…………….. and you can’t give them back once they’re out. Thing is, I don’t think I can continue to fight for another person. I can’t do it. I can’t care for a sick person……………not for the rest of their life. I don’t know how people caregive a child into adulthood…………… Still, it breaks my heart every time I see a baby picture, a big belly, an ultrasound or anything of the sort…………………. it reminds me of what I don’t think I’ll ever have.

I will be 35 in three weeks………………. and this is my life.

I’m tired.

>>Flickr pic by Meredith Farmer

Part Two… Behaviors Vs. Behaviors

Almost anyone dying from dementia suffers from behaviors. Behaviors are simply part of the game when it comes to this disease… BUT, there are “behaviors” and then there are “behaviors….” something no one can clearly define.

Here is my personal definition (and opinion because I’m a writer, not a doctor): Bad behavior – throwing your feces at someone or taking a sharp object and using it to attack another human being/caregiver. Tolerable behavior – spitting on the floor. 

My mother suffers from the latter………….. she spits on the floor, especially when she is really agitated. It’s how she acts out. She’ll yell, “Despierta America!!!” when people are doing things to her like thrusting a catheter inside her. She hates showers, so she’ll cause a ruckus. OK, it is important to try and put yourself in my mother’s shoes. She has no idea what is going on around her. She CANNOT communicate. She cannot tell me if she’s in pain. She cannot tell me if she’s happy.

The only two places on the planet right now that are remotely familiar to her are her house and her church.

Imaging being picked up and dropped off in the middle of Jalalabad, Afghanistan. You can’t speak the language, you have no idea who is on your side, who wants to help you, you don’t know where to go…. people approach you, what would you do? 

You would probably behave VERY inappropriately.

There was a time when my mother did act out. She would push me over to run to her boyfriend, The Priest. Sometimes, when I would try to restrain her from running into the church aisle, she accidentally hurt me………. wrestling in a tight pew can cause bruising and minor scratches. There was also a time when my mom would do things to get out of our locked house (she wanted to walk to church, her happy place)…………….. She took a pair of scissors and cut the screen door to try and get out. She used to spit — a lot. She would use the stove or microwave objects that clearly state on the label, “Do Not Microwave or You Will Burn Down Your House.”

My mother most definitely went through a very, very, very difficult stage. She gives new meaning to the Terrible Two’s………….. more like Terrible 70s.

Today, she’s mostly mellow. Medication helps that, but lately, even without the meds, she’s kinda quiet — except when you give her a shower……………… most demented people HATE water……………….. poke and prod her, force her to eat something she just doesn’t like, or you steal her hot water bottle……………. the thing is like her baby blanket. 

Or when she sees me. She talks to me….. Despierta America, la fruta, la fruta. Despierta America, la fruta, la fruta. Despierta America, la fruta, la fruta.

I understand.

After being told my deadline at the hospital, I got to work. I started making calls………. and then a miracle: ALTCS came through at around 330pm that same day she was rushed to the ER……….. I could place my mother. Somewhere.

Now in the name of honesty, when dealing with any type of home, you have to tell people what your parent is like because if they aren’t a good fit at the facility, it’s just a bad situation for everyone.

I spoke to one woman and told her about my mom’s current “behaviors.”

Her (paraphrased) response: Well, you know sometimes with behaviors, they end up in a place like St. Luke’s, which deals with behaviors.

My (paraphrased) response: Wait. St. Luke’s as in the psych ward? No. No. My mom ended up there a few years ago and they wanted to do shock treatment. No, I won’t do that.

Her (paraphrased) response: You know sometimes you have to be open to other solutions…. I mean, would you rather have your mother sedated all the time or maybe something like shock treatment might improve her quality of life. You know, shock treatment is not what you think… it has evolved a lot.

My (paraphrased) response: Uh-huh. Um OK. Well I’m still thinking. OK. I’ll call you back.

That’s the challenge. Right there……. that is the challenge. This is my mother and you have the nerve to bring up shock treatment — I mean, electroconvulsive therapy?

Makes you wonder how many of these folks would strap down their own parent (or child) and “medically” induce seizures so they can eventually be tolerable to their caregivers?

Behaviors are indeed difficult and tricky…….. but are we really this savage, this primitive?

A conventional nursing home was likely not going to cut it (I had called another place and was met with a similar response and then she told me they had no beds)………………. and since the nursing home of my dreams had no beds (they take in some of the trickiest patients, and have some amazing success stories sans ECT)………………. I started exploring group homes.

Perhaps a home-like setting would be the ticket. Still, I kept her on a waiting list for my dream nursing home…………….. just in case now and for the future.

I can’t tell you how difficult this was. At this point, I had maybe less than 24 hours to find something. Some homes were so-so — tolerable. Others reminded me of Deliverance. The woman at one place had only three teeth, which is fine, except I wondered, if you can’t even take care and maintain your own oral hygiene, how can you possibly care for my mother? Another place was amazing, stunning, perfect……… Dad and I agreed: this would be the place. I called less than hour after seeing the house and no call back. I texted. She texted back saying she’d call me later. I told her I wanted the room. Loved the house. “Tx,” she replied. I thought I had found the place. By 7pm we connect. “Um, I am so sorry but the room was sold, but I have a place in Surprise and then I will have availability in four weeks,” she tells me in her Eastern European accent.

Four weeks? You sold the room? Surprise?

The running joke with Surprise is that when you arrive in Surprise, you say, “Surprise, you’re in California!!!” It’s that far from downtown Phoenix.

I was desperate. I hadn’t found anything yet. I agreed to go to Surprise the following day.

In the meantime, dad found a place near his house……………. literally a couple blocks away. He wanted her close. He wanted to place her there. At this point, I was beyond pissed. I had had it. I was fed up. Tired. Smelly. Constipated. And sick and tired of my life.

I agreed to see the place.

I liked it.

It didn’t smell sick.

It didn’t smell over-perfumed.

It felt normal.

Bright.

Airy.

Normal.

I over emphasized her behaviors.

They didn’t seem to mind. They seemed capable. The house was simple, yet very clean. The residence didn’t look as though they were housed in some wretched cage. It was close too………….. always key.

OK.

Eastern European chick called me Monday morning to tell me that a room at the original house had opened up. Miracle. “Please come to my house. Please. I have 16 years of experience. Please bring your mom here,” she said.

Fuck off.

I didn’t say that. I thought it.

>>Flickr pic by Howzey

Go to Jail. The Game of Dementia

I’ve been thinking a lot about Amanda Knox (yes, the Foxy Knoxy)…. the American student who was imprisoned for some four years in Italy…. I’ve been thinking about her because much has been written about her ordeal, what she went through day in and day out, her routines, her rituals, the things she did each and every day so she could survive, so she could stay sane……………… her “suffering” got me thinking about the prison my own family lives in.

Allow me to insert my own disclaimer here…………….. No, I can’t relate to Amanda Knox or her trials and tribulations, that’s not the point of this blog post… k?

My mom, or what’s left of my mom’s gray matter, is trapped……….. locked away and no one can reach her……………… But what scares me, what is truly a revolting thought, is the idea that there might be a glimmer of her screaming for help.

To hear her.

To save her.

We know so little about dementia…………… words like, “a fog” are used to describe the state of the demented mind, but what if we’re wrong? Way wrong. What if she’s lost, trapped, unable to find the word, to reach out and tell us that she’s still here?

And then there’s my dad. My dad is in a different kind of prison. His prison is both physical………. he lives at home with her and he stays there, mostly 24/7………. and emotional………… he struggles to cope. My dad is angry. To be painfully blunt. He’s bitter, resentful, angry and he has a nasty habit of going back in time to relive all of the woulda’s, coulda’s and shoulda’s of his life. A dangerous (and addictive) game to play…….. I’ve never seen my dad like this, and it’s taken a toll — on him….. and on me…….. I mean, let’s face it………… the obvious coulda is their marriage…………. had he not married my mom, he coulda had a different life. Had I not been a factor, he woulda had options………… my parents marriage was hardly perfect; not the model example of wedded bliss…………….. I knew that VERY early on.

I remember wishing that they would get a divorce because I hated the fighting, the yelling………………. I would take long walks when they would argue and just sit in a park by my house — we lived in a mountain town in New Mexico and the silence was always welcome……………. to this day, I hate really loud noise………… loud music, loud people……….. I just want to savor the stillness, the hush………………..

Unfortunately, when coping with one parent who is deathly sick and the other who is struggling to stay afloat (he flails so much, I worry he could take me down with him) …………it puts me in a position whereby I’m trying to save everyone…….. trying to keep the peace, trying to play the therapist when I’m the daughter………… trying to make sure needs are met, trying to make sure life feels normal (I know, believe me)…….. trying to do what I can so the quiet stays for as long as possible…

I love my mother and my father……… I miss them, and yet, they hardly know me………. well, he hardly knows me………. still, they’re all I have in terms of my family of origin; and sometimes, when I sit back and think about how this grotesque disease is slowly decimating my family, I can’t see past the moment……….. I can’t look into my future…………. it’s black. There’s nothing.

It’s a frightening thought, but then not really because it’s my reality……….. my own prison.

If that makes sense.

>>Flickr pic by Funky 64…www.lucarossato.com 

Alzheimer’s Disease… Facts, Figures and What You Can Do

Advocacy Work or Advocacy Work?

I want to help people like me. People who are doggy paddling their way through this horrible mess. I suppose I feel like my dad and I have had to figure things out the really, really hard way……. so why not pass along the lessons we’ve learned.

TIP#4,592,569: When you’re with your parent, live in their world, talk to them in their language and carry wet wipes. Always carry wet wipes. 

That’s sort of the point of this blog. Share my story. Pass along the info I’ve learned……………….. make life just a little bit easier for someone else. Stuff like that.

A few months ago, I joined a group called YAAA! Young Advocates for the Alzheimer’s Association. The group was formed to advocate change at the federal level……………………… this means contacting your local representative, talking to them about the disease, sharing your story, etc…………………….. I’ve written to my representative a few times………….. to very little avail. I initially received a kind response from his press person—a good sign. I emailed her maybe 2 or 3 times since that first email and in her last response, she told me to send my messages to their general email address………………. from there, it will be distributed to the appropriate person (hopefully, their healthcare liaison………… still, I wonder if the intern will see my name and just hit “delete”).

Maybe Justice for the demented is demented herself. And blind. Or something.

So, I’m frustrated. OK, and a little angry. I pay taxes. I am a law abiding citizen. I have never been a burden to the system. So when I actually need this person to pay attention to me, I’m redirected to a “Write Your Rep!” link. Really? Seriously?

Dude, why don’t you meet my mother? Why don’t you see how draining this disease is on one of your constituents? Why don’t you walk in our shoes for an hour and try to understand why we need funding for this disease and other types of dementias.

I stopped writing to this person. I keep thinking I need to just keep drafting emails and shooting them out, but then I just become angry. I am considering leaving YAAA! I don’t think I have the patience to affect change like this. My patience goes directly to my mother; not to some overpaid congressman/woman whose job, let’s face it, is to get re-elected.

Maybe my purposes is to actually talk to people who are living this nightmare, instead of sending emails to blackhole@house.gov.

I know on some level I’m being bratty and impatient about this. It takes years to make change happen……………… Still, when I think about what our elected officials bicker about, who they pander to, and the issues that actually get people out to vote (Gay marriage? Seriously? That gets you out to vote? Why do you care if two tax payers want to get hitched? And who are you to play judge……….. why not worry about something that may actually impact you directly, like your health, and the fact that you may actually develop something like Alzheimer’s!), I lose faith in the system. I lose faith in government. I lose faith in our people………………………………. No wonder we are the laughing stock in so many countries, our priorities are truly jacked. We don’t care about OUR people. The people are last. And the people don’t care that they are last!

I’m tired of fighting. I fight for my mother on a pretty regular basis. I fight for information. I fight for her right to be heard, for her to be treated with some respect. I educate people about her—usually because she just yelled DESPIERTA AMERICA and I sort of have to explain why she just yelled bloody murder, but still……………………. so when I have to fight for a congressman to do his job and meet his people, I just want to quit. I just don’t know if I have the energy to write and write and write emails for a cause that will take years to manifest……………………… and in truth, I wonder, will more money make a difference in our loved one’s everyday life? I’m talking quality of life here……………….. Will there be more programs dedicated to people with Alzheimer’s or Frontotemporal dementia…………… Will there be training for healthcare professionals so they understand how to deal with someone like my mom versus someone like your mom? Will there be more programs designed to support the caregivers?

I don’t know what I’m going to do. I don’t know what I can do.

>>Flickr pic by Mjecker

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

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

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

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.

13.4 MILLION Americans May Develop Alzheimer’s

Found through one of my Twitter peeps. Shocking. Sad. Grotesque.

From TIME Magazine:

An Alzheimer’s diagnosis is a terrifying sentence: a slow deterioration of the mind that entwines a loss of self and life—a misery for both the sufferer and his or her family. More than half of all Americans now know someone with Alzheimer’s; for almost 30% of Americans, that person is a family member. And as Alice Park reports in her probing cover story, the aging of the baby-boomer generation will produce an explosion in the number of patients: by 2050, as many as 13.4 million Americans may be affected.

That means skyrocketing health care costs and incalculable burdens on the daughters, sons and spouses who may have to give up jobs, savings, time and energy to care for loved ones.

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

My Demented Mom On The Phone

I debated whether or not to do this, but I also think its important to hear her…… she is mother, a wife, an aunt, a friend, a daughter, a teacher, a sister, a daughter-in-law, a sister-in-law and more. This disease may rob of her of her memories and her self, but she’s a human being who deserves to be loved, to be heard and most importantly, RESPECTED. I just wanted share a piece of her. Her voice.

In a nutshell, she’s asking me why I didn’t make it on Sunday and if she’s talking to her daughter. She goes on to ask me to come over to take her to church (fruita) because wasn’t able to attend.

My Demented Mom on the phone

From God to Target With Love

I nearly lost it on Sunday. Nearly lost what remaining droplets of patience I had. Mom was especially hyper the other day, and, of course, incredibly eager to talk to her boyfriend: The Priest…………. over and over and over again about the same topic: coming over to dinner. My husband wants you to eat the fruit with us. Tonight! You come tonight!!!

Before Mass. As he’s approaching the alter. During Communion. As he’s exiting the alter. Outside.

Damn you short term memory!

However, what caused me to very nearly step off the ledge was the fact that the church decided to celebrate the priest’s 15 years commitment to the most holy universal church with carrot cake. That’s nice. What a surprise! And what a surprise when a gaggle of little children ran up to the front of the church to hug him.

In theory, this would be positively adorable. In theory. The problem is, mom loves the little ones and she loves nothing more than to tell them that she loves them. Thing is, instead of saying, “I luf you,” she grabs their little—still growing and therefore delicate—hands and yells, “I LUF YOU VERY MUCH. I LUF YOU”.

This can be scary if you’re only 3 or 4 or 5 years old. This is scary when you’re 33………….. mostly because I think of the freaked out parent who is going to one day come over and say something to her and to me about grabbing their little, still developing child (she has a firm grasp)—thankfully, the Hispanic community is too polite to say anything overtly rude. Mostly, they just stare and the younger ones just laugh. UGH!

So I was getting irritated. And irritation, when it comes to my beloved mother, leads to me utilize reason as a means to communicate with her. I was going all out LOGIC with her. I know, absolutely stupid and a complete emotional drain, which then frustrates me, angers me and makes me want to cry. Thing is, I can’t help it. I want her to understand that there are consequences to her actions.

Explain to her the ramifications of her actions.

Ask her to NOT grab those sweet, FRAGILE, little hands, which could break if you squeeze too hard!

PLUS, everyone STARES AT ME MOM! AT ME. LIKE I’M THE MEAN DAUGHTER!

This typically results in her a) laughing at me or b) telling me that no, they like it and she’s going to do it anyway, so fuck off (added for effect, it’s not in her limited vocabulary. She would probably say, FRUIT OFF).

After a few lame attempts to restrain her. Several LONG STARES from members of the church, we left and headed to Target to decompress.

Not before rewarding her bad behavior with nachos…………… 4 months ago, she used to love the fake cheese. Last Sunday she hated it. Weird.

Target. Stay on Target.

I love you Target.

She knows we go to Target for several reasons: to walk around/to spit on the floor/to spend some quality time together/to give dad some extra alone time.

The one thing I will say is that my patience meter typically refills after a few moments………………………….. or once I walk through the hallowed doors of Target.

Target is also one of those places where we’ve had some sweet, tender moments (believe it or not………. you buy toilet paper there; I bond with mom) and last Sunday was one of them.

I often don’t get “mom” moments. So when I do, I find them to be incredibly tender and sweet—it’s not typical, and maybe more mother/daughter in the sense that I’m the mother and she’s the little daughter offering fashion advice………………………… I was trying on a dress and she was actually doing a very good job of helping me decide whether to buy it. I tried on like 3 different garments and she was standing there telling me in her own way that it doesn’t look right or that it’s a good fit. She was very helpful and just a great shopping companion that day.

Funny thing is, my mom used to be a shopaholic. The woman LOVED to shop. She would buy clothes just because they were on sale! Would she wear them. No. But she bought them, because by God, it was on SALE! She still has two closets dedicated to her clothes……………… but dementia has taken away that joy. She hates trying on clothes and she only wears a few outfits, mostly she likes to wear this one particular Kelly Green dress that she bought for my cousin Lisa’s wedding in 1996.

It’s her favorite dress. Like in the universe.

>>Flickr pic by mergrje

My So Called Demented Life

When my dad told me he was going to retire last October, I didn’t fully understand how he felt. You see, my mom—sweet as she may be—is a handful. She’s still very headstrong and there’s this part of her brain tells her she’s normal. Perfectly normal. Normal enough to drive. Normal enough to serve Communion. Normal enough to go off to the Supermarket. Normal enough to do her own thing when she wants. In sum, this is my mother: “You’re not the boss of me. I’m the boss of me. I do what I want.”

Like microwaving plastic?

She’s also a talker. She could talk you to death or to the madhouse. I don’t know what it is………………… maybe the repetitiveness of it all; but for some reason, having the same conversation over and over and over and over and over and over and over and over and over and over and over and over and over and over and over and over and over and over and over (see, you likely find this annoying) again causes even the most patient and sane person/saint to pull out their hair/wings. Trust me.

Dad retired because her behaviors and her challenging or demanding ways caused him enough stress—leaving the house and his wife behind with a caretaker who you hope stuck around until 5:00—that it just made more sense to stay home with her.

His sanity demanded it.

At first, I questioned his rationale, but now as her disease has caused her to morph yet again—more lost words, repetition of the same words, the constant phone calls and the fact that she banks on Sundays, my day with her—I’m understanding the stress of leaving her behind.

Next week I head off to San Diego for work. I’m scheduled to stay for five days—plus a Sunday. I try to spend extra non-Sunday time with her to make up for my absence…. This is ultimately more about my guilt, of course. Absolving it. Making myself feel better about going away and not being there for her—or for him. Totally selfish. It’s what we humans do to feel better about crap circumstances………. or to play the hero in the play we call life. Duh. Thing is, she wouldn’t care if I came 6 days a week, because it’s Sunday that she cares about. Now my own stress level is starting to escalate……………….. A) Because I’ll have little time to see her during the week so I can selfishly feel better about my role as the daughter…………. and B) My dad will have to contend with the raving lunatic she becomes when she can’t go to church.**

**I’ve asked dad not to take her because it’s 2 hours of holding her back physically from running into the aisles, spitting, asking the priest repeatedly to come to dinner—even during Communion (slows the line up), yelling “hola Connie, hola Alex, hola Maria” at the top of her lungs, random stares, finger pointing, etc. I think the man does enough that he need not endure the above + listening to the word of God….. a God who did this to my mom and his wife.

Our So Called Demented Life…………………………….

I know that I’m supposed to have a life outside THIS. And I do……………….. but I can’t help but feel guilty about things—like having dinner with my boyfriend and enjoying a bottle of wine, I think ‘my parents should be doing this’—and I can’t help feeling anxious and doubly guilty about leaving; and I’m doing it again when I go to Thailand, Laos and Vietnam in November—my excitement and lust for adventure took hold and I booked it. Bought my tickets and put down a deposit. Now, I feel wretched and incredibly anxious for leaving my dad with mom because I’ll be gone for at least 2, maybe 3 Sundays.

Living my life or living for her?

>>Flickr pic by Hilary the mammal

“Mommy, she’s crazy!”

“Mommy, she’s crazy!”

Words uttered by the little girl sitting behind us at church. Mom loves kids so when she saw the brother and sister with their mom, well, she was overly excited……. as in grab-their-hands-and-ramble-dementia-speak excited. That’s like super excited for her…………….. Needless to say, I think she scared the little girl. Great. My mom is the scary church lady. I mean, I would be scared too if some woman grabbed my hand and kept saying, “Bonita, bonita! Eres la fruta, la fruta, la fruta, la fruta, mi esposa sale de mi!

TRANSLATION: Beautiful, beautiful! You’re the fruit, fruit, the fruit, my husband (or daughter, as in ME, in this scenario) came out of me!

I understand the little girl’s fear, but I also believe in the power of knowledge—at any age. And while it may not have been my place, I turned around and explained that my mom is sick and sometimes she says silly things that don’t always makes sense. I also told her that while she might seem a little scary, she just loves kids and she can’t help it that she forgets things or says silly things.

Her mom finally jumped in and said that her grandma has something similar……………………

Hopefully the next time this little girl sees my mom she won’t be scared—maybe she’ll even take my mom’s hand in hers.

>>Flicker pic by Pink Sherbet