Jan’s Story: Love Lost to the Long Goodbye of Alzheimer’s

A fantastically touching interview worth watching about early-onset Alzheimer’s disease. Award-winning CBS News Correspondent Barry Petersen talks about his book, Jan’s Story: Love lost to the long goodbye of Alzheimer’s, based on his journey with his wife Jan. Petersen talks about the changes in his wife’s personality, which started as early as 40, the reaction of family and friends when he started a new relationship after his wife was placed in a facility and his continued commitment to his wife.

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

Squishes

It’s been a while since my last post. Sorry about that. New job and all… these blog posts are sometimes tough to write… not because it’s especially difficult to express myself, but rather because I feel like we’re in a bit of a lull. Nothing is really happening with my mother. She’s mostly the same. I see little changes… but for the most part, she’s not any worse… I suppose the biggest change, which I’m clearly used to—already—is her poop situation. She has more accidents than say a year ago… but, you know, what can we do? It is what it is. Funny how you just accept things. Deal with it. Cope as best as you can. No point in crying. It won’t remedy the situation. I’ll use diapers when we’re going out for long periods of time—or rather, I will try to diaper her. Not always easy. Especially when your own mother is stronger than you are.

Anyway, my point. Changes. Better. Worse. Happy. Sad. Not really…

Because of my mom’s type of dementia, she is never “lucid,” whatever that means… there are no moments of wonderful clarity where my mother returns to her old self……………. my guess is that when someone actually has a lucid moment it’s like walking out of a dense fog, only to walk back into it again as the moment passes………………… my mother doesn’t have those moments………. she never really did.

However, she did do something recently that was just precious, maybe that was a glimmer of lucidity—sorta, kinda……frontotemporal lucidity, maybe…. I should preface this story by saying that I love of cats. I absolutely adore them, especially my own two cats……. I grew up with cats. My mother was also a huge cat lover………… we could never say no to a poor, homeless cat—which would explain our collection of cats over the years………….

Jon, my boyfriend, was over at my parent’s house. He has only known my mother as she is today. Severely demented. As her disease has progressed, she has sort of forgotten that she loves cats…. it’s actually rather sad, because two of her cats still try to rub up against her legs or simply vie for her attention. Most times, she just gets annoyed with them…. or pushes them away…. or ignores them……… occasionally she’ll pet them, but she doesn’t seem to understand that they want her to love them… I will say, she remembers that she has to feed them, so I guess that’s still there. Well one evening before dinner, my mom was sitting in her chair when her cat, Emilio, came walking by. Emilio rubbed his head against her ankle and she actually picked him up, held him in her arms and gave him a big squish—or a hug. I, much to my cats horror, am a massive squisher… but when we squish, both my mother and I make a little noise… Jon smiled… “So that’s where you get that from….” He saw a piece of me in my mother. I had forgotten about that myself… I don’t know what qualities I have inherited from my mother….. sometimes I feel like my memories of her are lost in that same fog…. yet I have no lucid moments… sometimes I dream about her, but she’s demented in my dreams.

I have never dreamed about my mom before her disease….

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

Coping with Me

My boyfriend says I worry too much.

I haven’t written to much about my new (actually, it’s been over a year) relationship with Jon. Jon is one of the most compassionate and understanding individuals in my life. He is patient and always kind……………………………….. best of all, he’s a gem with my mom. He holds her hand. He talks to her. He hugs her. He does everything a good man should. So what’s wrong with me? Why do I worry so much? Why do I let loneliness and depression consume me? For nearly a month, I’ve been depressed. I can’t always cope with myself the way I feel like I should. I beat myself up over it. I feel tremendous guilt about it……………………………….. worse yet, when I get like this, I can’t really function as a good girlfriend.

Case in point.

Jon got sick. So what did I do? I got angry at him. I was annoyed that he couldn’t do much except lie in bed. So, now I’m left to my own devices plus I feel obligated to care for you. Do you need anything? I asked half-heartedly. NO. Good. I don’t want to care for you. I want you to get better so we can go out and enjoy the sunny day. I hate feeling trapped inside all day. I hate feeling trapped. I’m sick of people being sick. It infuriates me. I came over after spending the day with my mom—he was feeling slightly better. I told him that I was angry at him. He said he knew. Then he said that he’s noticed that anytime he’s sick, I get annoyed.

I never realized I had a habit of this kind of bad behavior. The guilt consumed me. I felt terrible………………………. but I also knew why. I don’t want to have to deal with another sick person. Jon is seven years older than me and sometimes I think, what if something happens to him? I don’t know if I can handle another loved one succumbing to a disease like dementia. What if I become the abusive caregiver that you hear about on the evening news—I disgust myself.

So this weighs on me. Then the loneliness sits heavily on my shoulders. Some days, I just miss my mother. Some days, I just sit on my sofa and I feel absolutely alone. The phone doesn’t ring. No one is texting me. I’m sitting here by myself listening the cars go by outside. I have no siblings or close relatives nearby. No one to say, let’s go have lunch and talk. I get lost in my head and in the stories………….. the what-ifs. The what-if-my mom-weren’t-sick is the big what-if. I would probably be living at home saving money and not stressing about the little things. Like a job that drains me emotionally. Like saving money. Like my fear of getting fired. Like my fear of getting some disease and not having anyone to caregive for me. Like my fear of never having children. If my mom weren’t sick, maybe I could actually freelance and write that book……………………………………….except what would I actually write about? My mom’s disease has brought me to this very place—a place where people have actually heard of My Demented Mom. A place where I have a forum to talk about her, me, our relationship and this disease. Do you realize how wrong this all is? God just laughs. He created the world in six days and bailed on the seventh. And then he left us alone. Frail and vulnerable to fend for ourselves.

Optimists would call me a pessimist. Maybe I am. I do try to appreciate the moments that I have. There are so many wonderful blessings in my life. I have my health, my mind, a job, a loving boyfriend, cats, parents who love me so much and good friends like Natalie, Cheryl and Lindsay.

I just wish I could get over myself and enjoy the moments more instead of reveling in the darkness.

My pity party is boring.

Flickr pic by Loca Luna

Daddy-Daughter Dance at the Shooting Range…

My dad used to call me his “princess” or “buckaroo.” Not anymore. My dad was always my favorite parent. He wasn’t exactly the disciplinarian, unless I did something really bad like crash my car—5 times (only 3 accidents were technically my fault)—and he would always indulge me whenever he could. The perks of being an only child and his daughter, I suppose.

But with mom being sick, our relationship has changed…. he’s a husband and parent and I’m a daughter and parent of a wife and mother. Strange. We don’t always agree on her caregiving…. he’s still my dad and her husband, so while our arguments aren’t exactly arguments, they’re tifts, mini squabbles that end fast, never escalating, just disagreements—I don’t know what they are really….. some jacked-up daddy-daughter dance, I think we’re both trying to do what’s best for our demented loved one without pissing off the other.

Clumsily treading some twisted dance floor, never looking at each other directly in the eye, that would be awkward… an uneven parquet floor, desperately avoiding each other’s toes. It’s often rather gauche. And sometimes subtle moves are made to steer the other partner in another direction. Trip. Ouch. My toe.

I miss my dad. I don’t have any other family in Phoenix and I often feel very alone. It’s just the two of us—and sometimes, I do wish my mother’s disease would take her away, so I, selfishly, could have my daddy back….. dinners, lunch, drinks… political conversations, movies…. maybe even holidays with friends… These days, holidays aren’t my thing—I like them, but I’m not into them because for me there’s no point…. instead they’re just a tragically grotesque reminder of what IS and what will never BE.

“We should visit your parents again, maybe lunch or take your dad shooting…”

That’s HIM. The man I’ve been dating now for almost four months. I couldn’t believe it—he actually wants to spend time with my family. That’s weird. He wants to hang out with my dad. He is willing to sit through lunch while my mom forces him to eat carmel popcorn (she shoveled a handful onto his plate the first time he came over, he graciously accepted). Who is this dude? This CANNOT be real or HE cannot be human. But he is. He accepts me and my family for who we are. He knows that I miss my dad and that I wish I could have my Kat and dad time…. without my mom.

So this Saturday, the three of us are going out shooting and then bringing back Chinese food for lunch with the man and the fam.

“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.