Who Am I Now That She’s Gone?

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There are a lot of similarities between a small child and someone living with dementia. Specifically, frontotemporal degeneration. I remember so many of my mom’s odd quirks. Once, she poured her Coke into her glass of red wine. She drank it, much to my dismay. My toddler did something similar recently. She poured water into a bowl of hard boiled eggs then she mixed it around and ate it. I immediately thought of my mom. I can’t remember if I laughed or felt sad. Her disease caused her to mentally and emotionally regress… a real life Benjamin Button. I always thought having a young child would be, in some ways, easier than having a mother with dementia. In some ways it is: there’s so much more joy, more laughter, fewer tears. My toddler is also considerably lighter than my mother, and when she is upset or angry, I can actually pick her up and hold her… or relocate her. Something I wasn’t exactly able to do with mom (remember those times with her priest?). Lately though, I have been missing my mom; missing something about her… I can’t quite put my finger on the what. Maybe just her presence. Her scent…. I don’t know. I lost my mom, really, when I was in my 20s… I became the parent and she became the child. Before that, I was living in another city thousands of miles from home. I feel guilty about that. Maybe if I had stayed in Arizona, maybe I would have had more of those moments… precious moments that would have stuck with me, helped shape me into someone better that who I became. Instead, my memories are blurry… sometimes I’ll hear something or get a whiff of something and it’ll transport me to a particular time or place… but they’re few and far between. And sometimes I’ll dream about her. Those are the sweetest nights. I wish she came to me more often.

And then there are times when I can’t feel her at all. The loneliness is palpable.

I thought I would be relieved when my mom died. I was in most ways. I was glad she was no longer suffering in a broken down body. I was glad to put that chapter behind me and focus on my baby. I thought the hurt would fade away, too. Time does some neat tricks when it wants to, and frankly, I lost my mom a long time ago. But what I’m learning is that this kind of loss sticks with you. I know it has changed me. And I don’t know if it’s for the better. The final years were incredibly brutal and how one recovers from such a trauma is beyond me. To wallow in it would be selfish and indulgent, though there are days where I wish I could stew in it. So I try to keep going. I hate when things become stagnant. When that happens I desperately seek change. Is this blog, is the work that I do to share our story stagnant? I mean what else is there to say? Is it — this — the anchor holding me down or the means to truly let go. I have no idea what any of it means or if it means anything at all. I guess the truth is I don’t know who I am anymore now that she is gone.

That’s a little lonely, too.

 

Five Survival Tips for Caregivers

Caregivers bear the brunt of a lot, which is why, in the process of caring for our loved ones, we need to take care of ourselves, too.

Or so I tell myself every single day.

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Reverse Empty Nest Syndrome

http://www.flickr.com/photos/run_dorkas_run/When I walked into the front door of my mother’s home, a little over two weeks had past since my last visit. Because of the influenza epidemic that turned Arizona bright red on the “flu view” map of the U.S., the home issued an edict banning practically all visits until it subsided. They told me that if I was healthy, I could check in on her as long as I wore a mask and doused my hands in sanitizer……………………………. I think they felt sorry for me. I sounded completely lost when they called to say no visitors: “Oh. How long? Really? I, mean, I’m fine. Can’t I just check in on her once in a while? I just worry.”

Unfortunately, my own immune system was obliterated not 24 hours after the ban was put in place.

Great timing.

Before this, the longest I had gone without seeing my mom was, maybe, 48 hours……………. When she spent time at the geriatric psych ward last February, I was told I had to wait for her to be assessed.

Torture.

Letting go is not my thing.

This time, I was too sick to get out of bed. Too sick to get in my car. Too sick to feign good health just so I could see her. I really missed my mom. I felt empty. Alone, really. Even though my mother can’t talk to me, her presence, while it makes me sad on the one hand, also gives me comfort. Of course, in some ways, this is what it’ll be like when she’s actually gone, and if this is a sign of things to come, it won’t be the relief I’m so desperately seeking.

Life without stressing over her wellbeing, her care, getting kicked out, her flooded diapers, if she’s in pain, Medicaid, finances………………………….

I feel physically, emotionally and mentally sick. I am physically, emotionally and mentally sick. Who am I kidding? Sure, this might be the flu, but it’s also years of fighting the disease that has consumed both my mother and my father.

I don’t expect either parent to be alive when I turn 40. That’s four years from now.

A reverse empty nest.

Last Monday, despite the ban, I decided to visit my mom. They said I could. I walked in expecting to be turned away. The thing is, I was really worried about her finger nails. What if they cut her nails too short or what if they didn’t cut them at all and she snagged her nail on something? What if she has a painful hang-nail? I brought my clippers.

I am perpetually drowning in the minutiae.

***

“Hey Patty, I know there’s the ban, but can I please see my mom? I’m not sick anymore.” 

“Hi Kathy, Sure. How are you feeling?” 

“I’m OK. I just miss my mom is all.”

“I know. I would feel the same way. I’ll give you a mask; just be sure to use the hand sanitizer.”

“Should I leave my bag here?”

“I don’t think that’s necessary.”

My mom’s asleep. Her head is hanging to the right like a rag doll. I take a black sweatshirt, fold it up and tuck it beneath her neck. The room is warm and  her radio is playing NPR. Aside from her crooked neck, she looks comfortable. I place my bag on the console nearby and plop down on the arm of her beige pleather chair. She finally wakes up, turns her head and stares at me. I smile. Of course, she can’t see my smile… I’m wearing a blue surgical mask that sits awkwardly on my nose. I squeeze the metal band on the nose in hopes of it fitting a little better (don’t these things come in small?)……………. UGH, now my glasses are fogging up. I consider taking the mask off… just so she can see who I am. What if she forgot who I am? It’s been over two weeks? I decide against removing the mask. Instead, I take her hand and hold it. She can’t really hold my hand; her brain isn’t firing off a signal that would tell her fingers to wrap around my hand.

A few seconds pass and she starts yelling.

“It’s me! Your daughter! I love you.”  She’s either horrified by my presence or saying hello.

Hard to tell.

Mom’s roommate is in the room. I’ll call her Margie, though that’s not her real name.

“Hey Margie, how are you? Have you been taking care of my mom?”

“Oh, sure.”

I don’t want to stay too long, it’s already 9:00 a.m. and I’m late for work. I rub mom’s head until she falls asleep again……………………………. I look at Margie and ask her to take care of my mom.

She obliges, of course.

I walk outside, talk with some of the caregivers, get in my car and drive to the office.

Just your typical Monday morning.

>>Flickr pic by Run Dorkas Run

Death, Compassion and Humor. Not In That Order

Hi Kathy, we’ve got the two letters from your mom’s doctors, so you can come in and sign the DNR.

Oh, great. OK. What time? Noon? OK, I look forward to it. I mean, I’m not looking forward to it. Um, you know what I mean.

And that is how I made the appointment to sign my mother’s death warrant. Over the past eight years, I have had to make many incredibly difficult decisions on behalf of my mother……………………. some are more difficult than others, some can leave you curled up in a ball in the middle of an ER. Signing the DNR (Do Not Resuscitate) was an easy decision to make, by easy I mean, I would remain upright as opposed to curled up in a ball crying……………………….. of course, my mom already had a legal document stating that she did not want extreme measures to be taken to prolong her life………………… what she did not have was an actual DNR, an orange piece of paper that the paramedics look for before going above and beyond to save a life. It took me a couple of months to actually get this taken care of…………….. yes, I knew what to do, I knew what needed to be done, but getting it taken care of………..well…………….asking her doctor to write a letter stating that she has a terminal disease with no chance of ever recovering can kind of fuck you up………………. psychologically speaking, of course.

So, I made an appointment for myself instead.

Great to see you…. you look good. What’s can I help you with?

Well, you know I still have that weird pain on my right side; I’m still constipated, but that’s probably stress; and I need you to write and sign a letter stating that mom’s dementia is terminal and stuff. It’s for the DNR.

Sitting in his office, making my request……………. it just struck me as funny………….I don’t know, the whole experience was sort of Seinfeldesque in nature.

Finding the humor in my suffering, our suffering, is, I suppose, a survival skill……………. it’s what helps me cope with my walking grief………….I actively try to seek out the funny. I have to; it’s what keeps me sane, because to experience this kind of sorrow day-in and day-out, with no relief in site, no source of comfort, no regular family support, no hope that she’ll one day be cured, well, that dark, depressing vortex can appear inviting after awhile…………………… because face it, getting out of bed to watch death dance around my mother as she languishes in this life is neither healthy, nor is it how I like to start out my mornings………………..

But I do.

You do.

It’s what we do because it is the right thing to do.

Even though we’re all on the verge of folding our hands.

******************************

Hi Kathy, good to see you, come on in…………………. I walked into her office and sat down, ready to sign the DNR. It didn’t feel like a big deal, after all, I’ve signed plenty of documents absolving the medical community of all responsibility should they accidentally kill my mom……………………….. it was just another piece of paper. Until she started reading the paper and telling me what would happen if (and when) something happens to my mom. There will be no cardiac compression, no endotracheal intubation, no artificial ventilation, no life support drugs or emergency medical procedures……………… the words sit in your gut for a while.

She handed me a tissue.

I signed the document.

She signed the document.

The witness signed the document. She touched my shoulder and left the room.

*****************************

I am convinced that we confuse compassion for pity……………… compassion is something else; compassion takes time…………. pity, however, is much easier to dole out. Compassion is a rare quality which few possess and I now understand why. People don’t want to talk about this disease; they don’t want to witness it; they don’t want to walk in your shoes; and they don’t want to take the time…………… this is compassion as I know it: A former colleague sent me an e-mail after learning that my mom was being housed at the psychiatric unit last February. Although he had never met my mother, nor did we keep in contact after I left my job, he offered to sit with my mother. He said, “I have an extra set of hands and if it is in my power, I would like to help.”

That is compassion.

………………..

The Moment I Knew………. The Moment I Entered Denial

My Moment

Some exciting news came in the mail today…………………………. my contributor’s copy of the new book, THE MOMENT by Larry Smith of Smith Magazine (finally!) arrived. Over a year ago, Larry asked me to contribute something to this wonderful project he was working on, which is out and available to buy…………………… THE MOMENT contains stories by writers and artists — both famous and obscure (like me) — who share how a single moment changed their lives……… in an instant and forever.

Or as Larry puts it…………….. “The turning points, revelations, epiphanies, dramatic changes, the opening or closing of a door—in a life, a career, a love—can occur in a single glorious, terrible, unpredictable, serendipitous, crucial, calamitous, chaotic, amazing… Moment”

My moment revolves around my mom…………………………….. and the moment I knew; the moment I went straight to denial.

 

A huge thanks to Larry for including me in this book. I am beyond humbled. Larry, you always gave me a shot and you’ve never doubted me. Thank you!

 

My Demented Mom in the Sacramento Bee… “We don’t have survivors.”

The Sacramento Bee interviewed me for a story about early-onset Alzheimer’s… the piece ran last week. Not sure how much attention or awareness I brought to the issue, but hopefully, my tiny part in this story will get more people thinking… dementia is not an old-person’s disease. People as young as 30 or 40 have been diagnosed with dementia… people with young children, teenagers. This disease does not discriminate. It does not care who you are, what you do, what color you are of if you’re rich or poor…………. can’t help but roll my eyes at the pettiness in our politics, when I know, you know that in 40 or 50 years, the real crisis isn’t going to be whether the Earth was formed 6ooo years ago or 6,000,000,000 years ago… the crisis will be this disease. A disease we are neither prepared for, nor can we afford. Hopefully, people will start to wake up…. listen up world, this disease is coming for you and its merciless.

 

Early-onset Alzheimer’s strikes people in their 50s 

acreamer@sacbee.com

PUBLISHED THURSDAY, AUG. 18, 2011

Starting in his early 50s, Lou Bordisso Jr. knew something was wrong.

One time, he got lost in a Macy’s store in San Francisco and couldn’t find his way out. Another time, expected in a meeting, he rode confused from floor to floor in one Financial District skyscraper, then the one next door.

“I could not for the life of me find the conference room,” said Bordisso. “Then one day, I couldn’t remember how to log in to my computer. That was the beginning.”

At 57, the American Catholic Diocese of California priest should be in the prime of his life – but last year, he was diagnosed with dementia related to Alzheimer’s disease.

There’s good reason we think of Alzheimer’s as a problem of old age: Age is the degenerative brain disease’s only known risk factor. Fully 90 percent of people with Alzheimer’s are 75 and older, experts say, and nearly half of people over 85 have it.

Even so, according to the Alzheimer’s Association, a small sliver of the diagnosed – up to 5 percent – haven’t yet seen their 65th birthdays. That means 200,000 Americans younger than 65, including 19,200 Californians, have the disease.

The early-onset form of Alzheimer’s is little understood. Experts know that for a small number of people whose memory loss begins in their 30s and 40s, genetic factors play a role. But why do other people in their 50s and early 60s get the disease?

Researchers don’t know.

“It’s a less common age to have this disease,” said Judy Filippoff of the Alzheimer’s Association of Northern California. “At 65 and younger, most people don’t expect this diagnosis. They have many responsibilities, and they haven’t slowed down, either physically or mentally.

“And now they have to change their life in ways they didn’t imagine. It can be quite a shock.”

Much too early, people diagnosed with early-onset Alzheimer’s lose their past as well as their future. The disease is both progressive and fatal and has no known cure.

Mike Fisher spent his career with law enforcement in Contra Costa County. At 50, he was Lafayette police chief as well a Sheriff’s Department lieutenant.

Then he was diagnosed with Alzheimer’s.

“I was having a hard time remembering codes,” said Fisher, now 53, who lives in Benicia. “I was having memory problems in my 40s, it seems like. I hit 50, and it’s gotten worse more quickly.”

Many people with early-onset Alzheimer’s still have kids to raise and families to support. Many are helping care for their own aging parents or planning for their own retirements.

Suddenly, the future they mapped out disappears, not only for them but also for their loved ones.

In that sense, Fisher is lucky: He retired from the Contra Costa County Sheriff’s Department with generous pension and medical benefits, and his 18-year-old daughter recently entered community college. Yet he knows his wife of more than two decades will be his caregiver one day.

“You plan as much as you can,” he said. “We go to support groups, and you can see the progression of the disease. It’s kind of scary, to be honest. It can be very sad at times.”

In her blog inspired by her mother’s dementia, 34-year-old Phoenix writer Kathy Ritchie has discussed Alzheimer’s as an ongoing process of grief and loss for family members. Many people coping with their parents’ early-onset disease are still in their 20s, she says, and they feel cheated out of the friendships that develop between parents and their adult children.

“We don’t have survivors,” said Ritchie. “The only people who bear witness to this disease are family members. It wreaks havoc on families. The toll it takes, I can’t even describe it.”

Lou Bordisso Jr.’s diagnosis presents a different kind of role reversal. His father is 97, and though Lou Sr.’s hearing is bad, his mind is still sharp. As Lou Sr. recovers in a rehab facility from a recent illness, his son came home to Sacramento from Vallejo earlier this year to care for him.

Instead, father and son share a caregiver.

Lou Jr. can’t drive any more, because he misjudges distances. His balance is off: Unless he uses a cane, he’s unsteady on his feet. Without help, he forgets how much medication he’s taken.

Since his diagnosis in May 2010, his life has changed enormously, downsized to a quieter, more manageable shape. He was bishop of his diocese for several years, but he took bishop emeritus status instead. The longtime marriage and family therapist also resigned from his secular job in forensic mental health with Contra Costa County.

“I was making mistakes,” he said.

He lives now in the Land Park house where he was raised. Being on familiar territory helps. Never married, he counts on his close-knit extended family for assistance.

Bordisso receives state disability insurance and has applied for early benefits from Social Security, which has added early-onset Alzheimer’s to its expedited access list of “compassionate allowance” conditions.

“I’m used to being a responsible person and doing my part,” said Bordisso. “Being on the receiving end of services is a difficult place to be. I’d like to be a productive member of society. I want to be able to contribute.”

Not long ago, he was named to the Alzheimer’s Association’s early stage advocacy committee, a national advisory board.

And he finds new, unexpected meaning in this unwanted stage of life.

“I can’t recapture the past,” he said. “I don’t remember it. The future, I have no idea what it holds.

“The gift of this disease is to live in the moment. Now is all I have. Literally.”

 

Taking It Out On the Lucky Ones

I don’t tend to get pissed off very often… you know, the kind of pissed-off-rage that suddenly comes over you like a blanket, only to have this urge to hit something (or someone). That feeling or moment came over me last Sunday………………………….

I took my mom to church and although I was prepared — she wore a diaper — we still had an accident. A messy one. She had made it to the toilet, wiped, pulled up her diaper, walked out of the stall……………. and then this this look came over her face…… that look that I’m sure most young kids give when they just realized they pooped their pants — so close, yet so far.

Mom sat back down and when she pulled down her diapers there was a little mess… OK, I’m OK… my “diaper” bag was in our pew so no spare diaper… let’s just clean it up and hope for the best………………… she had a better idea, she put her finger in it. Things spiraled from there in terms of poop-gate. I eventually got her mostly cleaned up….. I think some poop splattered on my foot and a little got stuck in the nail of my thumb. I will say that it took a lot of self control to not vomit……………….. vomiting crossed my mind. I just couldn’t wipe and puke. OK. Wipe, wipe, wipe and let’s roll! Things were cool. We were cool. She was cool. I was cool. We survived mass………………….. amazing.

And I was fine. A little frazzled, but cool………………………………

I texted my boyfriend at some point to tell him about what had happened. He replied with an upside down emoticon……….. I mean, truly, what do you say?

“sucks to b u. LOL…”

Not long after the emoticon text, he texted me to tell me that he had just had lunch with a friend at Paradise and they were hanging out by the pool.

I snapped on the inside. I was pissed. I was angry. I was mad because he was doing what I would like to do……………… have lunch with a friend and hang out. As fast as it came over me, it was gone……. I would never ask or expect my boyfriend to give up his Sundays so he could go to church with us… he does enough for my family……… nor would I ever ask him to stop telling me about his day………… like any good boyfriend, he was just giving me an update……………….. but there was this flash, this flash of anger……….. jealousy. I suppose we all feel that from time to time…….. envy ………………. because we aren’t like other people; we have responsibilities and obligations…………. you show up because that’s just what you do.

Taking your problems out on those closest to you is not uncommon….. some days, life just gets under your skin…….. I am at a point now where this disease is like a phantom limb…. I know the limb is gone, but sometimes I can feel it….. I know the disease is there, it doesn’t always affect me, but every now and then, it just pisses me off…………… that, and it’s too hot out……………… and the person who is at the receiving end of my crankiness is Jon. I know it’s not fair……………… I try to sequester myself when I’m in a funk, but sometimes, my funks can last for a couple of days………………… I just feel sorry for myself. I feel angry. Resentful, bitter and filled with contempt — especially towards those in my own family who I feel judge me and my dad………………… or judge the name of this blog.

Because that’s the real problem……………………… [insert sarcasm].

Jon is kind. He is compassionate and patient. He doesn’t get angry. He doesn’t lash out. He just waits for me to come out of the fog……………………………… to get over it.

Until the next time.

My latest funk has been a bit nasty………………………… just thinking about her, poop, life, its meaning, my purpose, my dad, his health, next steps with my mom….. do we put her in a home next year? When is the time right? What if we face a similar situation like last time? When will this end?

Overthinking is rarely good for the soul.

>>Flickr pic my one of my personal faves…. Meredith Farmer

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



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

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.

World Alzheimer’s Day or Memories of Mom

It’s September 21 OR World Alzheimer’s Day……….It’s also a day that I just tend to think back on things; where my life is today and how the fuck this all happened…………………………………………..

Unfortunately, as Alzheimer’s Disease progresses, the family often bears a heavy burden. I only wish there was some way I could spare Nancy from this painful experience. When the time comes I am confident that with your help she will face it with faith and courage. ~ President Ronald Reagan

I vaguely remember the day I thought my mom could actually have Alzheimer’s disease…… At the time, I didn’t realize there were other forms of dementia. I was sitting at the kitchen table. She had a sample box of Aricept and I was reading the list of warning signs…………….. “Oh shit… no. Maybe? No. Absolutely not. No. No. No. No.” Her doctor never said she had the disease, he just thought it might help with memory issues……………. you don’t think about the overall implications or the logic of giving your mom Aricept and what that actually entails………….. I remember thinking about Ronald Reagan, his son Ron—we worked together briefly at ABC in NYC…………………………. and then I thought about how long and messy this could potentially be: YEARS.

And then I thought about actually having to wipe my own mom.

Like a normal person, I ventured into denial, convincing myself that she was depressed. She had just retired and frankly, sitting at home all day is really rather depressing. “Mom, get a part-time job at Dillards,” I remember saying to her. “Want to go shopping?”

I said this to her in English.

Time passed. Denial set in. Mom’s just a flake. She’s getting older. She’s depressed. Maybe a trip to Ecuador will help….. Then, the little behaviors began to appear.

She would refuse to throw out old food. She once ate an “aged” burrito from God knows when only to vomit everywhere—repeatedly………. that was an especially fun afternoon.

She stopped cleaning. The house became a dusty sty. I would make her clean with me. She just wanted to watch TV all day.

She stopped paying attention to the road, telling me instead that God would protect her. God is not a good Co-Pilot by the way.

You get good at making excuses for these grotesque behaviors.

You know on some level what you’re likely dealing with, but the reality of this disease is simply too much to absorb.

Coping is not really possible at the beginning of this long, drawn out disease.

2010………………………………..We’re at the half way mark I suppose.

I knew something was horribly wrong in 2004.

She was diagnosed in 2006.

I came to terms with her disease in 2009.

Demented Shoe Shopping or Dying Alone With Bon Jovi


My mother had me late in life. She was 40. My father was 30. I can’t imagine being a parent at 30; I can’t imagine being a parent now at 33—although in some ways, I am, but not really. It’s weird. Most of my rearing was done by my mother. She was the strict one. My dad, on the other hand, was gone during the week on business. Of course, me being his only daughter, allowed for some leeway, shall we say, unless the situation warranted yelling, like when I crashed his car—more than once.

I don’t have many memories of my mom. Our relationship was never exceptional. We went shopping a lot. Our bonding took place in Z, L or U-shaped malls. We would spend hours walking around, perusing major department stores in search of I don’t know what, nor can I remember what. I can’t recall a single conversation that we might have had. I can’t even remember what she sounded like when she spoke English.

“That looks nice on you….”

That sounds strange.

Last Thursday, my therapist asked me to tell her about my early relationship with my mom. I didn’t understand the question. You mean, like what we talked about or what we did? We went to the mall and shopped.

Did you enjoy that or was it for her?

I think I enjoyed it. I like shopping.

What came out of that back and forth was that my mom, in all likelihood never really understood me, nor I her. She raised me as she saw fit. A good Catholic girl. To that end, she never really took the time to know why I didn’t want to attend catechism classes or participate in a particular activity. She did what she thought was best, while in the process never giving me much of an opportunity to develop on my own—to formulate certain opinions (might explain my need to constantly apologize or in some cases, wait to see what other people think before sharing my views), to express myself as most pre-teens or tweens or whatever that age group is called with fashion, hair or even music (my friend natalie’s favorite memory of my mom is the one where she cut out the skull where my idol Axl Rose’s hand was resting… my second  attempt to cut the cord; my first attempt to just be me involved a Bon Jovi tape a few years earlier—my mom made me destroy it after she heard the word “devil” in one of the songs…. this could be construed as a slight Fuck You, but I occasionally listen to “Blaze of Glory” in my car…. bad, bad ass). I was never rebellious. I never sassed off—OK, maybe a handful of times…. oh, I did throw a plastic chair in the pool during a fit of depression/anger. I went to my room to cool off. Then I cried. I never stayed out late. My mother told me that sex was only good for the man, so I never dated (let alone put out) in high school, preferring instead to stay home and watch the X-Files on a Friday night. The idea of kissing a boy actually horrified me. My poor prom date had to practically force a kiss out of me—actually, he held something of mine for ransom in his trunk. I was coerced.

So here I am today. Afraid of dying alone, and childless to boot. I am scared of being abandoned, of having no close family to speak of to support me and invite me over for those smaller holidays like Flag Day. My dad’s family lives in Minnesota and my mom’s live mostly in Ecuador…….. and even at those occasional reunions, I just don’t feel like I fit in. I want to fit in. I want to belong to something bigger than myself. I suppose I long for a life that isn’t my life;”longing” that’s my shrink’s word…. but I suppose it’s accurate. I long for a traditional family. I long for laughter and family gatherings. I long and crave understanding. A mother who gets me. A mother who appreciates my peccadilloes. A mom who can openly talk to me about life, love and all that stuff that I envision mothers and daughters talk about. I long for something that does not exist, nor will it ever exist. It’s a fantasy that I’ve held on to and I am working on letting go—at $40 a pop. My new mantra, I’m OK and will be OK and this is my reality.

I don’t hate my mom. I know she raised me with so much love and for that I’m lucky and blessed. Certainly, some days I feel conflicted. Here I am raising her… trying to allow her to be who she wants to be and to not force what is PC on her because it makes some stranger more comfortable with her disease. I have no idea if I’m doing a very good job. Ironically, I take her shopping. I take her to Target and to Payless. We’re shoe shopping. I just wish she would wear a pair of Uggs! So easy! We walk around and she spits on the floor. She’s not as patient, but it’s all we have left.

>>Photo from by Rocket Ship | Flickr

A Series… A Struggle… A Black Hole

I don’t know what it is or why, but I am having a terrible time coping with everything that has happened to me and my family. The last couple of years are maybe now finally hitting me… the move, the end of a six-and-half-year relationship, the disease. When I moved to Phoenix in January, I felt a tremendous amount of relief: I had done it. I was here and ready to help my parents get through this—I wanted to be the hero. I wanted to save my dad and give him peace. I wanted to protect my mom and find her the care that she deserved.3509199828_22e65ca353

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

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

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

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

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

2650112070_4d7f89da05I am tired.

I am angry.

Reactive.

Illogical.

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

I hate not feeling in charge of my life.

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

How do you reconcile that love and that hate?

Who is she?

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

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

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

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

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

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

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>>Caged: http://www.flickr.com/photos/36041246@N00/

>>klaus kinski saviour III: http://www.flickr.com/photos/annamalina/

Interview: Sandra Gonzalez, Latino Outreach Specialist

My latest interview is with Sandra Gonzalez, Family Care Consultant, Latino Outreach Specialist—Alzheimer’s Association, Desert Southwest Chapter. Sandra was actually the first person I talked to about my mom’s condition. You see, besides coping with her diagnosis, my mom comes from a very large family in Ecuador and sometimes family dynamics in Hispanic homes can play out differently than in non-Hispanic homes. Hispanics tend to be incredibly family-oriented and may not always be open to seeking outside help, instead expecting the daughter to play the role of caregiver. Although this isn’t the rule, and is not the case with my own family (although, yes, some members of my  family wanted me to move to Phoenix to be closer to my mom, they did not expect me to play full-time caregiver—or at least no one said so to my face; but I should say that my grandma in Minnesota—my non-Hispanic dad’s mom—said the same thing except in a high-pitched Minnesota accent, dontchya know, so, ya, go figure), I wanted to touch on this subject because it’s an incredibly complex subject wrapped in layers of raw emotion—love, guilt, grief, anger, sympathy, sadness, compassion, and resentment to name a few.

Thank you Sandra for your gracious time and constant support.

SANDRA, WHY DID YOU GET INVOLVED WITH THE ALZHEIMER’S ASSOCIATION?
Although I have two relatives who have been diagnosed with two different types of dementia: Alzheimer’s disease (AD) and AIDS Dementia Complex (ADC), I was drawn to my current position for the opportunity to work with the elderly population. Serving as an educator who increases the awareness of these diseases and a provider of on-going support within the Hispanic community was also a tremendous draw for me. I have a niece with Down’s syndrome. She has about an 80% chance of being diagnosed with AD by the time she reaches 50 years of age. Needless to say, I devour as much information as I can, so I can share it with the families I serve and with my loved ones.

YOU DEAL A LOT WITH LATINOS WHO ARE COPING WITH ALZHEIMER’S. DO YOU THINK LATINOS DEAL WITH THIS DISEASE DIFFERENTLY BECAUSE LATINOS TEND TO BE VERY ROOTED IN FAMILY?
Yes, I believe that Latinos deal with this disease differently than the non-Hispanic community in general. There are several reasons for this. Cultural changes occur based on the level of acculturation. However, some traits seem to remain firm, regardless of how long someone has resided in the states and what their level of acculturation is. Latinos are very rooted in family. The family’s needs as a group are more important than an individual‘s needs. Emphasis is placed on personal relationships. Trust and respect are key elements within the family. Until an outsider has developed a true connection with the family to the point where he/she can be trusted, the outsider’s attempts to educate and support may not be accepted or integrated within the family. Great value is often placed in closeness and togetherness, regardless of the family’s dysfunction. Problems are kept within the family without outside intervention. Studies continue to indicate that Hispanics receive medical care for complaints related to dementia much later rather than early in the disease process. Part of this may be based on strong belief in prayer and destiny. The use of herbal and folk remedies is commonplace. Several families I work with use these remedies to supplement their medical regimens. Faith in God and rituals may support a passive role, rather than an aggressive approach to dealing with the disease. Pain and sickness may be seen as God’s punishment for past sins and so a person may decline pain medication in order to suffer and pay for his/her sins. Some families have expressed great frustration with this behavior. On the one hand, they want to respect their loved one’s wishes and beliefs and on the other hand, they want medical treatment that may help. There is also the stigma of mental health. Mental health is downplayed or not addressed. It stays within the family and is not shared with outsiders. It is also viewed as punishment from God or a curse. Alzheimer’s Disease may be viewed as mental illness or as the normal aging process. Most afflicted family members will tend to depend on the family to make the decisions and assume the responsibility of care. For many, doctors are revered in high esteem and unquestionable trust is placed on them. Although, counsel is easily accepted from the doctor and the religious leader in the community, the family member’s status is usually unsurpassed.

WHAT ARE THE EFFECTS ON YOUNGER CAREGIVERS, ESPECIALLY ON THE DAUGHTER?
Traditionally, the assistance by the children is expected and does not diminish feelings of self-worth. The daughters, especially, provide care and assistance to the elders. There is usually a large network of kin. Numbers for placement outside of the home are low due to the caregiver role responsibility of the female. The role itself is not viewed as one of a caregiver. Instead, it is viewed as the role of a daughter. This differing view of the role of caregiver can make it challenging for the female family member to accept help that is offered to “caregivers.” I’ve witnessed much inner struggle for some adult daughters caring for their parents with AD. The conflict seems to be impacted by the daughter’s level of acculturation. Acculturation includes changes in education level, socioeconomic status, beliefs, customs, mores and other changes in one’s way of life. For someone who is highly acculturated, the assumed role of caregiver by virtue of one’s gender, may diminish feelings of self-worth. Although, the degree of responsibility placed on the daughter may seem unfair and excessive, it is more likely that the resources at her disposal would be utilized. She would be open to venturing out of the home for assistance, education, resources and support. She may be more inclined to seek guidance and support from support groups, which are a foreign concept to less acculturated Hispanics.

MY SENSE IS THAT LATINOS TEND TO BELIEVE THAT FAMILY SHOULD CARE FOR THE AILING INDIVIDUAL, IF THIS IS SO, HOW CAN ONE TALK TO OTHER FAMILY MEMBERS IF MORE OUTSIDE HELP IS NEEDED?

Due to the fact that Latinos believe that the family should care for the afflicted individual, approaching multiple family members for help is critical. Our personal needs, emotions, moods, and attitudes play a big role in how well we listen and how clearly we express ourselves. Preparing for meeting with relatives to solicit support and assistance may be more important than you might imagine. I suggest the following considerations: 1) Get in touch with your true feelings, thoughts and beliefs as they pertain to all aspects of caregiving. 2) Be ready to express yourself as clearly as possible, without any assumption that the other persons have any understanding of what you do, need to do, struggle with, etc. 3) Use only “I” statements and be very careful to avoid any “you” statements. 4) Avoid any inference to blame, victimization, criticism, or anger. 5) Clearly describe the problem. 6) Clearly express what you feel. 7) Then what needs to happen in order to provide the best care for your loved one, reminding them that you all want what’s best.

Close with the consequences of what may happen if your loved one’s behavior continues and you’re unable to get their physical and emotional support. It’s a matter of setting the atmosphere so that the family can really hear you and become engaged in the conversation, which will lead to the cooperation you seek. Often, this is no easy task. But often, it is a challenge worth taking.

For practical matters such as who can do what, try to allow the family the opportunity to volunteer for some of the tasks. Emphasize people’s strengths and suggest that they’d be the best one to do the particular task. Rotating assignments is important in order to prevent burn-out. If, people do not cooperate, then set a time limit for plan B. If plan B involves placement and the relatives oppose this, they need to hear that this could be prevented only if they participate in the care as discussed. Some families will be opposed to any idea or action taken by the primary caregiver. It’s best to offset criticism and judgment by not reacting and instead, reverting to “I” messages.

Some examples are: I believe I am doing the best I can…… I feel saddened by what I just heard……. I’m asking for help….. I love my mother very much…. Keep it positive. If you feel yourself getting emotional to the point where you will not be able to express yourself clearly and/or without negativity, then it’s time to end the meeting. Sometimes, it could help to invite someone from a supportive organization to help mediate the family meeting.

IF YOU HAD TO GIVE SOMEONE A “TO DO” LIST AFTER LEARNING OF A PARENT’S DIAGNOSIS, WHAT WOULD BE YOUR TOP 3 THINGS TO GET DONE?
This is an easy one. The top three initial steps I recommend can be done simultaneously.

a) Obtain all necessary Power of Attorneys

b) Contact the Alzheimer’s Association in order to educate one’s self about the disease, available community resources and supports

c) Develop a care plan for your loved one, with the assistance of a Family Care Consultant, who can provide on-going support

DEPRESSION IS SOMETHING I NOTICE MANY CAREGIVERS OF ALL AGES SUFFER FROM; HOW CAN ONE STEM THE EFFECTS OF DEPRESSION?
Depression rates are highest among women, older people, people with chronic conditions and caregivers. It is treatable. The goal in treating depression is to address it as quickly as possible and keep it from becoming severe or chronic. Some of the standard treatments include various kinds of talk therapy, medication, and learning depression management skills. There are also alternative treatments, which may help address this on an emotional and spiritual level as well. Best results can be obtained when a combination of interventions are used. The most important message is, SEEK HELP. There are many reasons why one may not seek help. Denial can be a powerful coping mechanism, albeit it an ineffective one. Maintaining a strong ally or support network with someone who one can fully trust, is essential to stemming the effects of depression.


A Move Home

As an only child of a demented parent, I often feel very lonely and anxious. There’s so much I want to do to improve my mom’s quality of life, but I often feel very limited. The resources are there… they just cost a lot of money. A sick, gut-wrenching crime, in my book. As for my mom, I have tried to do the best that I can from afar. Navigating the byzantine health care system and the disease itself (vascular dementia and Alzheimer’s disease) is not easy from my apartment in Queens. Besides that, the emotional roller coaster has finally taken its toll. I am not happy. I can say that with total conviction. I don’t remember the last time I truly felt happy. I am unable to actively participate in my own relationship with my boyfriend of six-and-a-half years. I can’t take a full-time job in New York City because I won’t be able to travel as frequently to Phoenix as I’d like. I have no savings, no 401(k)—although, I suppose no one else does anymore either. I feel emotionally stunted: I am distant, lost in my head, angry, sad, grief-stricken, frustrated, disappointed, nervous, and the list of adjectives goes on… and on. You get my drift.

So last week, I decided to move back to Phoenix. Although I had thought about this move for a long time, and came very close last summer to moving back, a part of me just couldn’t make the move. I wanted to try and make a life for myself here. And I tried, or rather struggled, like a fish out of water, to make that happen. I also tried to convince myself that moving home would be unhealthy for me. My mind started going back into its dusty archives looking for reasons to find my parents unfit, contemptible, not deserving of my love… I thought, “they didn’t do this or that and they failed in this way as parents, therefore, I am not moving home.” This twisted logic served me for a very brief while.

Eventually sanity took hold.

I am my mom and dad’s daughter. I don’t look like either one of them physically, but I have (and this is my personal opinion, but I think most of my friends would agree) my mother’s heart. I am compassionate, sympathetic (empathetic too) and very forgiving—even when I maybe shouldn’t be. I love to shop, I can’t resist a good sale and I love anything bedazzled, although I try to keep that in check—I attribute our love of anything glittery to our Latinaness, so you see, it’s not our fault that we love shinny stuff. My heart melts for cats… I can’t watch an ASPCA commercial without crying. I inherited my dad’s love of travel and maps. I want to touch each continent and that’s because of him. He took me to see every Star Wars movie and sat outside with me in our backyard in Muscatine, Iowa to scan the heavens for Haley’s Comet when it passed the Earth in 1986.

Yes, there are moments when I want to hate my parents, and I suppose, for brief periods I do. I hate what dementia has done to my family and to me. My parents are not perfect people, nor were they perfect parents. But they loved and still love me so, so much. I can’t even imagine what it’s like to have that much love in your heart, I suspect only a parent could know. And now I am going home, well to a studio, very close to them, to participate more fully in my mom’s care and to help my dad who is alone and needs his daughter now more than ever before. Despite my relief, I am so sad.

I don’t advocate moving closer to a demented parent. I know many adult children who have parents living far away. I think, at the end of the day, you have to follow your gut. My gut said, “go home.” And if my gut had said, “stay,” I would have stayed in my apartment in Queens.