Guest Blogger: My Boyfriend

My boyfriend Jon talks about meeting my mom… funny to read his story, because in some ways, it’s very different than mine, which you can check out below:

The week leading up to the big meet.

The meeting… postmortem.

Jon’s story……………………………………………………. thank you so much for doing this!

I first met Gaita in early 2010.  I don’t remember the exact date, but I’m pretty sure it was in March.  My new girlfriend invited me over to have dinner at her parents for the first time.  To me this was a mere formality—something you do when you date someone—something that didn’t bother me in the slightest.  Kathy on the other hand?  Well, let’s just say she was very anxious about this meeting, and not in a good way.  Unbeknownst to me, I was about to venture into a world that many had not been to before.  Unbeknownst to me, I was one of a few people who Kathy actually took over to meet her mom.  You see, Kathy was embarrassed.  But this kind of embarrassment-turned-anxiety was not at all what the average person in this situation goes through.  There weren’t those thoughts like, ‘Will my parents like him?’ or,  ‘Will he like my parents?’   Instead, it was more like, ‘Will she scream at him?’  ‘Will she spit on the floor in front of him?’  ‘Will he see this and run????’  Well, I’m happy to report that it’s been almost a year-and-a-half and I haven’t run. In fact, I’ve been over to dinner at her parent’s house many times since then; but, I digress…back to my first meeting with Gaita.

To tell you the truth, I didn’t know what to expect.  The only time I’ve met someone with something similar to what Kathy’s mom has was back in high school when I met a friend’s grandmother who suffered from Alzheimer’s disease.  I didn’t know much about it, but I remembered that she forgot things pretty much instantly.  So at the time, to me, dementia was something that just caused you to lose your memory.

Obviously, as we all know, dementia is a lot more than that.

When Kathy invited me to dinner, I didn’t think twice about it. This was my girlfriend inviting me to have dinner with her parents.  So her mom has dementia…don’t all families have something?  Maybe it was in the way I was raised.  All I know is that I never thought anything about it.  Obviously this was something that stressed Kathy out tremendously.  I remember the four of us (dad, Kathy, mom, me) standing on the back patio.  Kathy’s mom had walked up next to me.  In the blink of an eye, there was Kathy inserting herself between us, adding some ‘protective field’ or barrier she thought was necessary.  Turns out, there was no need.  Yes, her mom suffers from some behaviors, but who doesn’t?  So she spits on the floor (something I actually haven’t seen her do in some time now)… I pick my nose in private.  So she repeats herself since her vocabulary has diminished with the disease… I play by the five-second rule. My point is, we all have something. I remember telling Kathy when we left that it wasn’t the like she walked out of the back room naked or something.  And even if she did, it wouldn’t have mattered.

Despite her fears, dinner was really pleasant. Gaita greeted me in Spanish, of course (she lost her ability to speak English).  And when she realized I only spoke English, she told me in plain English, “I don’t speak English. I only speak Spanish from Ecuador.”  I always thought it was so funny how she told me this in English.  Now, she speaks almost no English at all. Once in a while, she’ll say, “Oh I see,” which really means she has no clue what you are talking about or what’s going on.

Besides Kathy trying to keep her mom at bay, the entire visit was really nice.  Gaita is one of the sweetest women I’ve met, despite her disease. I didn’t know what to expect, but I didn’t really expect anything if that makes sense.  I expected to have dinner at my girlfriend’s parent’s house where mom with dementia lived.  That’s all. No more. End of story.

Still, this first meeting took its toll on Kathy. Even STILL, it takes a toll on her. Every time we go over to see her mom, there is something in Kathy that is still ‘protecting’ me from her.  As silly as that sounds, that’s how I see it.  I also know that Kathy has come a long way when it comes to her mom and me, and she might actually be starting to believe that I accept her mom for who she is, as someone who has frontotemporal dementia. That’s the only mom I’ve even known and the only mom I ever will know.  I understand how hard this is on her and  I don’t want her to worry about me.

She has enough to worry about.

>>Flickr pick by 27147

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

“How’s your Saturday goin’?”

Lola coffee chick: “How’s your Saturday goin’ so far?”

Me: “It’s been interesting…”

Lola coffee chick: “Oh, no. That can be good or bad.”

Me: “Yeah, well, you know. I’ll take a drip coffee with skim.”

Lola coffee chick: “I’ve had those days [giggles]. Sign here.”

Me: “OK. Thanks.”

Lola coffee chick: “Have a great rest of your Saturday.”

Me: “Thanks. You too.”

FOR THE ALTERNATE ENDING, TURN TO PAGE 77.

Lola coffee chick: “How’s your Saturday goin?'”

Me: “You really wanna  know? OK. Here goes…..Well, let’s see. The dude I’m dating just met my demented mom. She was you know, OK, but still, it shook me up enough to where after I dropped him off, I called my friend Catherine and nearly had a nervous breakdown on Central Avenue. Came home. Popped a Zantac for my goddamn heartburn and promptly walked over to your place for desert and coffee. Cause that’s how I cope. What? I like coffee and the burn of reflux at the same time. Don’t  judge me. Now give me my shortbread. What’s the total? You take cards right? Good.”

Lola coffee chick: “Sign here.”

Me: “OK. Thanks.”

Lola coffee chick: “Have a great rest of your Saturday.”

Me: “You smell and I hate you.”

“Catherine, I feel embarrassed, ashamed and exposed.”

HE met her.He finally met her. Weird. Anxiety. I wish I could take something. I’ll have a beer with my lunch. Dad, are you gonna finish your beer? I don’t like it. Too sweet. Christ, not gonna let a perfectly gorgeous Blue Moon go to waste.

This is the first time anyone new has met my mom. Most of my new friends know of my mom, but not one has met her. I tell them stories about her. They see my face or hear my voice when I have one of those days, but they’ve never met her. Maybe a few have seen her picture, but I don’t introduce her to people just cause. Weird right? Weird that I have entire blog dedicated to her, her disease and how it has affected my life, but few people actually get to meet my mom.

When old friends who’ve known her for years—pre-dementia—pop over, it’s no big deal. They know me, love me and accept that this is what it is. I don’t really give it much thought…. I’ll ask them what they think, if they think she’s a lot worse than what they expected or last remembered, etc, etc, etc. Blah, blah, blah. Muah, muah, muah, muah…………………………….

Mostly I ask because I forget what “normal” looks like sometimes.

But he’s new.

I don’t know what he’s thinking.

I guess it would be a lot to take in. Still, I feel weird. Exposed. Raw. Embarrassed. Ashamed. Not very good adjectives. But this is isn’t a very normal disease. What if he is so grossed out by the situation that he just wants to say, ‘Fuck it’?

My friend Catherine, who was the lucky recipient of my freak out telephone call, said that if he did do that, he’s not worth it. I guess. But if he can’t handle it, who will? Even I don’t even want to play this hand anymore. Game Over.

The freak out. Well, it was weird. As I was driving home, this tsunami of emotion just came over me. I called Cat. I started crying. I started losing my mind. Peripheral vision gone. Why is this happening to me? Why does she have to be like this? My feelings about this situation, HER, her disease, everything just erupted. I could barely catch my breath.

Cat was at birthday party for her son’s friend. There was screaming. It came from a kid, not me.

I don’t often cry about my mom these days……. crying about her gets me nothing, except a headache, so I avoid it.

Catherine says I should tell him exactly how I feel…. I suppose I will. I’m just writing down my thoughts for posterity’s sake. Right here. Now. Or I’ll forget. It’s a blog. You can do that shit.

She spit on the floor. HE saw it. I didn’t look at his face. She laughed I think.

She spit on the floor.

“She does that,” said my dad matter-of-factly.

She spit on the fucking floor.

Christ. Yes. She does do that.

She spit on the floor.

Sometimes I can laugh at shit. But right now, I’m angry. You know what, it is fucking unfair to have a demented mom. I’m 33 and I’m tired. Normal people introduce their friends and boyfriends to smiling happy parents who golf and drink Chardonnay.

My mother spits. A lot. I hate that. It grosses me out.  I cannot, for the life of me, accept it. I try to teach her to spit outside or in the garbage can. She just laughs at me. She fucking laughs at me.

Am I some sort of clown, mother?

Do I amuse you?

Um, that would be a big fat fucking YES.

I know she doesn’t mean it. I know this. I am aware.

STILL…………………

The woman is like the  Terminator, I swear to god. She never stops [spitting]. She cant’ be bargained with [when it comes to spitting]. She can’t be reasoned with [about her spitting behavior]. I have no idea if she feels pity for anyone [who has to clean up her spit or watch her do it], or remorse [like when she spits in public].

Ughhhhhhhhh. It’s been an interesting Saturday to say the least.

Boy Meets Mom…..

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


Guest Blogger: The Single Gal or Dating and Dementia

2425651754_c6ba81e235Karin and I got to know each other in our New York City support group. She’s incredibly funny, super smart, and a just beautiful woman with a dog who didn’t jump on me once at the Alzheimer’s walk last year. Karin is navigating the interesting world of dating. Dating with a demented parent is not easy. The inevitable “parent” question is bound to come up and you can either lie: “mother is on the junior league and volunteers her time to the poor and orphaned children.” Or you can go with the truth: “my mom  shits herself and spits on the floor at Target. What did you say your mom does again? Junior league and orphans, eh? That’s terrific. Check please.”

I wanted to share Karin’s story because she is doing the dating thing in a very open, honest and brave way. Navigating a world that is already filled with challenging situations, awkwardness, and plenty of weirdos is hard, often times sucky, and just plain exhausting… of course, there are a few good ones out there… if you meet them, hold on to ’em… but Karin is dating and she’s doing it with NYC balls, sass, and always grace. The woman is tough and amazing. I give her credit. Airing your dirty, or rather, demented laundry isn’t easy and can quickly end any first date… but can you blame anyone for walking away? I often wonder, if I get through this and meet someone going through this very same situation, would I want to take another walk though hell even if he is holding my hand?

Karin’s story:

I am currently single, looking to find the man who will be my mate, lover and best friend, all rolled into the perfect package.  The whole process of “dating” requires that you open yourself up to a virtual stranger, and let them into your world to see if you want them to continue to be there, and if they want to continue to be there.  Inevitably—what feels like sooner rather than later—the question of your parents comes up.  I used to consider just outright lying, “Yes, my parents have been happily married for 40-years,” but as a smart fellow support group member (Susan) told me, if they can’t accept my mother (and family situation) for what it is at the beginning, it’s doomed to fail.

Since receiving that bit of advice, I now respond with the honest truth.  I have no relationship at all with my father (parents divorced when I was young and haven’t seen him for the past 15 years or so), and my mother has Alzheimer’s disease. She has no idea who I am, what my name is, or that I am her daughter.  She requires full time care, drinks her meals because she has “forgotten” how to swallow, and wears diapers.

Before becoming sick, my mother was the strongest woman in the world. She worked a full time job,  then came home to support and raise my brother and I—on her own, with no real support to speak of.  The mother who raised me is my hero, and everything  my brother and I are today is because of her.  On the other hand, the person who resides in her body today is a stranger, someone I choose not to see because I want to remember who she was, and not be left of memories of this shell of my mother.

Sometimes, while out on dates my mother’s aide or day care program will call and those are calls that I have to take as they come, never knowing what the latest crisis may be.  I have learned to take and deal with those calls in front of dates—as embarrassing as it is for me.  I can sometimes look at someone after I’ve hung up the phone, and just know that its game over, won’t be seeing him again. Other times I am shocked that my date wants to know more about the situation and is supportive of me and my mother.

Since my mother’s diagnosis, I have not yet been in a relationship where I have had to talk about the fact that this may be a genetic disease.  That conversation frightens me for so many reasons.  Having that conversation means that I will have to address the reality that I may one day be like my mother (this was her fear as well, and here she is today,  just like her own demented mother). It also means I will have to tell a potential mate, that if they choose to spend the rest of their life with me, in thirty years, give or take, I may be just like my mother. Worse yet, I may pass on these faulty genes to our children.

Like any other 31-year-old single New York City woman, I’ve come to learn that dating has its ups and downs.  I’ve also learned that we all have our faults. But I do believe that I will one day soon find my “better half.”  As excited as I am to find him, it upsets me greatly that the woman who is responsible for making me who I am today will not be able to share in the joys of my future.


Image from Flickr by Adam Foster: http://www.flickr.com/photos/paperpariah/