Lee applying lipstick
Photo by: Phillip Maisel

Media often plays it soft when it comes to the portrayal of Alzhemier’s disease on TV shows, in the news or in movies………..… that is, they skirt around the complexities surrounding the disease, the emotions, the financial implications, the long-term toll…………. Sure, some works are more adept than others at portraying the effects of dementia………. The short film, My Name is Lisa, hit on some of the more brutal realities of the disease, specifically, the toll on children…………..… Others, well……………….. The TV show Raising Hope superficially touches on it — sort of — with its character Maw-Maw………. of course, her senility is used to get laughs. The movie The Savages annoyed me more than anything else………”irreverent, hilarious”……….. not so much. Away From Her was a beautiful film, but, for me, it was too easy — the character with Alzheimer’s chose to move into a nursing home and her adjustment was, for the most part, seamless. The movie actually left me feeling worse about my own situation………. Why can’t my mother be like her? Am I doing something wrong? God, I wish my mom were like her…….

The truth is, dementia is a hard story to tell. It isn’t a sexy story. There are no survivors, so no happy endings. Alzheimer’s disease and other dementias are incredibly grotesque…….. twisted……. disturbing………. and until we start having an honest, more mainstream conversation about dementia, it will continue to be the disease that gets swept under the rug…………… Let’s face it, no one really wants to talk about “that.”

Until now. Documentary filmmaker Scott Kirschenbaum does talk about “that” in his film, You’re Looking At Me Like I Live Here And I Don’t premiering on PBS’s Independent Lens Thursday, March 29 at 10-pm (check local listings).

That title pretty much sums up this beautifully poignant yet jarring documentary about a woman named Lee Gorewitz who lives at the Traditions Alzheimer’s & Other Dementia Care Unit at the Reutlinger Community for Jewish Living in California.

Kirschenbaum doesn’t do much talking. He doesn’t hold your hand throughout the film. He doesn’t make you feel at ease.

In fact, when the film opens, you can’t help but feel disoriented, even confused because you’re given no sense of direction, but then, that is his point…………….. and then you meet Lee.

Charismatic, delightful, even poetic, Lee takes your hand and guides you into her  world…………. a world of disconnected, fleeting memories………….. a world she’s trying to piece together and navigate in her own way. Lee has Alzheimer’s disease and this is her story…………. a first-person account. We don’t hear from her family, her friends or her doctors — Kirschenbaum did that on purpose. “It needed to be wholly about Lee’s present-day existence within the walls of the Unit.” Watching Lee tell her story is humorous, exhausting and heartbreaking all at once…………… to watch this woman quizzically stare at family photographs, to read a card addressed to “Mom” and not realize she IS mom, to watch her dance and smile, only to later tell another resident that she’s going to die……………..

Kirschenbaum refuses to sugar coat the disease.

We see Lee as she is…………… Kirschenbaum sums it up best: “In the span of minutes, Lee would morph from pensive thinker to gregarious helper, from bubbly mover-and-shaker to morose and sometimes cruel instigator.” His decision as a filmmaker to leave the grotesque intact is brave. As an outsider, it’s often difficult to understand what the individual goes through — as well as their family — until you have witnessed these unsettling scenes unfold.

Lee is a remarkable woman……………. you can’t help but fall in love with her………… you can’t help but want to reach out and comfort her, laugh with her, cry with her……. And despite everything, she’s resilient…………. or maybe she knows she doesn’t have a choice…………… this is her life and she must keep going……………. even as the walls are closing in on her.

“Widowed, cloistered, and slowly undone by her inability to think or speak clearly, Lee has every reason to succumb to the expectations of her conditions. Instead, she defies despondency. When she breaks down, she rebuilds. When she loses words, she summons emotions. And, despite the small defeats of her efforts, she remains an exceptional and resilient soul.”

I talked to Kirschenbaum about his remarkable film below:

There’s no narration. Why did you decide to let Lee tell the story?The goal from the onset was to place the viewer in Lee’s world — in this time of her life — and not rely on her past or someone who lives outside the Alzheimer’s Unit to tell Lee’s story. I wanted to let Lee communicate to the audience. I think, in essence, there is a narrative but it’s not a conventional Hollywood narrative. This is the fragmented reality of Alzheimer’s. There was a method and strategy as to how the scenes were oriented, one after another — as an Alzheimer’s odyssey.

You show the grotesque in your film, which is unusual… why did you decide to go there in your film?
For me, I know if I’m going to explore an Alzheimer’s unit in earnest, the entire continuum of emotions needs to be evidenced in the final film. Just as integral to showing Lee telling a joke in front of a caregiver was showing the most painful images that occur in Alzheimer’s unit. I want the audience to see that there’s a great deal of humanity and to be fair to what actually occurs in that environment, so audiences can be clear on what this world is, so they can hopefully connect with this world on a human-to-human level.

Has this film changed your view on aging?
As a filmmaker, I’m trying to explore difficult and challenging environments. I feel more connected with life and living by making films more than any other work. There was a sense of urgency in making this movie … I know about the emotion and the psychological impact its had on me. I feel a sense of gratitude that I was allowed to make this movie, to befriend Lee and the other residents, and was allowed access to this beautiful and depressing world. I want to be someone who has the capacity to hold space in my life for these kinds of relationships.

You said you wanted to target younger people with this film… Why?
The entire film crew were in their 20s and 30s, so as a young group we wanted to go there… I know some of the most impassioned advocates for Alzheimer’s awareness are young people and I wanted this to be a film that they can rally around and be excited about. In my dream scenario, this movie is for all age groups. This is a reality. Alzheimer’s is not going away. It’s worth everyone’s time to experience this… to get comfortable going to an Alzheimer’s unit or nursing home and trying to connect … We should not ignore our elders no matter how debilitated they are or difficult their situation is.

You’re Looking At Me Like I Live Here And I Don’t will air on PBS’s Independent Lens this Thursday, March 29 at 10-pm (check local listings).

http://www.kickstarter.com/projects/thinkfilm/howards-brain?ref=recently_launched

The skinny on Howard, his brain and the film:

Who’s Howard?

Howard Glick is a 53-year-old man currently living alone in New York City. Howard’s funny, outgoing, talkative and has had an interesting life.

If you saw him on the street, you might not notice him. But there is one thing that makes him different from most of us: Howard has a rare brain disease called Frontotemporal Degeneration, or FTD.

A disease that steals your soul

Never heard of FTD? Join the crowd. FTD is a form of dementia, but instead of attacking memory like Alzheimer’s, it affects the frontal lobes of the brain, the part that controls your behavior and emotions; your personality. Take away your frontal lobes, the “social brain” and the you that is “you” ceases to exist.

FTD typically starts younger and affects people in the “prime of their lives”. No matter what age you are diagnosed, FTD is irreversible, untreatable, and incurable.

It is What it is 

In 2010, I made a short film about four families struggling with this terrible disease. The film It is What It is was told from the perspective of a husband or wife caring for their spouse with FTD. Each of their stories was sad and heartbreaking but also some of the most powerful testaments to love that I have ever witnessed.

Still there was something missing. One of the effects of FTD is that it mutes the self-awareness of those afflicted with it. They lose the ability to make sense of and express what is happening to them. All too often, their voices are silent.

And then I met Howard.

Howard Glick, FTD

Howard is different: he knows he has FTD and he can describe what it’s like to live with the disease – from the inside. Howard is far from silent.

So last September, I gave him a video camera and asked him to record himself. Howard is funny, candid, introspective and articulate. You can get a sense of him and what he’s been through by watching the video above.

Like so many others with FTD, Howard was mis-diagnosed and suffered through six-and-a-half years of what he calls “absolute hell.” Once a successful businessman, Howard describes his current financial situation as “retro-economical.” He lives in a rent-controlled apartment in Washington Heights and gets by with a little help from his friends, a check from Social Security, and 63 cents a day in food stamps.

But Howard is a remarkable fighter. While he struggles to keep his own symptoms in check, he also started a blog and a FaceBook group to help others with FTD. He has online followers from around the world. He writes candidly about his own life and he speaks with a special wisdom of those benighted by FTD.

Howard’s Brain

The challenge facing Howard now — and for telling his story — is that it’s going to take a while to write the ending. There is little that is typical about the progression of FTD so Howard lives in uncharted territory.

So we’ve set our sights on the horizon. We have about 100 hours of footage so far and Howard continues to film his daily life. My plan is to send a small crew to shoot what Howard cannot and to interview those closest to him. All the funds raised through this Kickstarter project will be used to pay for that shooting and to begin editing.

Howard’s Brain is the first-person account of one man’s reach for a life that is slowly extending beyond his grasp. I believe this film is a unique opportunity to raise the voice of FTD. Through Howard’s story we hope to spread awareness about FTD and support the goal of ultimately finding a cure. We hope you’ll want to help us with that mission. Thanks for your support.

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

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

My Demented Mom on the phone

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

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

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

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

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

>>Flicker pic by Pink Sherbet

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

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.

My mom does not remember the Bolmaro family. Barbara remembers her.

Here are her memories of my mom:

I remember a woman who welcomed us with immense generosity into her life. Who was always smiling and was very polite. Who was amused by my city-kid distrust of people. I remember a woman who helped my mother get a job. Who cared for my grandparents qhen they came to visit, who played “canasta” with us. She was always very kind and generous and I´ll always remember her fondly.

It was two Sundays ago when I showed my mother Jeannette Montgomery-Barron’s new book, My Mother’s Clothes. Thing is, I wasn’t talking to her about my latest freelance gig; I was actually trying to distract her—in church. It wasn’t working. I know, you don’t get it. You don’t get the fact that my reading Jeannette’s book to my own mom was tragically ironic.

Or maybe it was just sad. Possibly humorous. I’m not really sure.

Funny and sad are intertwined, and “happy” is a word I reserve for special occasions, like “love.”

Turning the pages, I read to her out-loud and pointed to each beautifully shot photograph.

“Pants. Pantalones.”
“Blouse. Blusa.”
“Shoe. Zapatos.”
“Purse. Cartera”

Then somewhere in the mix, as often happens, I became the mother and she became the child.

And so the common thread emerges.

Montgomery-Barron’s book is a memoir and a poignant tribute to her own mother, who passed away in 2007 from Alzheimer’s disease. My mom is living somewhere in the murky, muddled middle stages of vascular dementia—one of the many diseases that fall under the umbrella that is dementia—Alzheimer’s being the most common, with some five million Americans living with the disorder.

Check out the rest of this interview and/or share it with your peeps.

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.

]]> http://mydementedmom.com/2010/02/28/hows-your-saturday-goin/feed/ 3 Kathy Ritchie http://mydementedmom.com/2010/01/21/a-new-friend-or-speaking-of-alzheimers-dot-dot-dot/ http://mydementedmom.com/2010/01/21/a-new-friend-or-speaking-of-alzheimers-dot-dot-dot/#comments Thu, 21 Jan 2010 13:35:15 +0000 Kathy Ritchie http://mydementedmom.com/?p=541 Continue reading →]]> I have a few friends that I know I can call or send a message on Facebook who will answer ASAP….. If something happens with my mom and I need to talk. I know one of them will be there. Interesting thing, we don’t talk much outside of Alzheimer’s. Even when I lived in New York City, I only saw these people about once a month…….. when we did meet for 3+ hours, we laughed, we cried, comforted each other, spilled secrets, made startling confessions about ourselves, our parents and the players in our lives.

Sofa (inside joke).

This was my NYC young adult Alzheimer’s disease support group……. a bunch of 20 and 30-somethings getting together once a month to share stories about our demented parents….. and how we’re coping with it all.

Yes. I realize. This is not the “normal” way to make friends.

Stil, what amazes me about this motley crew, who still meet up once a month (minus me), is  that in all likelihood, our paths would have never crossed had it not been for my mom — or their own sick parent. The actress, the professor, the fact checker, the accountant, the marketing exec…… people I never would have met if it weren’t for my mom. They are a blessing to me……… and her disease is a curse. I care for each of them very much — even if I don’t see or speak to them often. I think of them almost daily. I see them on Facebook. I comment on their lives. I miss seeing them. Sharing stories about my mom and dad and how things are going in my demented world.

When I left NYC, I left my support group.

Another loss in a way.

So as I navigate the world of Alzheimer’s and dementia, meeting others who are in my same or very similar lifeboat is important. It reminds me that I’m not alone and that there are other people willing to listen. To be a friend.

Meet Lori La Bey.

I stumbled upon Lori’s blog, Alzheimer’s Speaks, and reached out to her to see if she would guest blog or share a story on My Demented Mom. We spoke for over an hour about our moms. Her mom is in the final stages of the disease and Lori is chronicling her story and other stories in her blog. She’s also working on a book due out sometime this summer, tentatively titled, “Alzheimer’s Speaks
Guiding Caregivers To Be Their Very Best! Giving Voice and Enriching Lives—As the Cookie Crumbles.”

I like Lori. She gets it. She gets that this isn’t a cute disease……. It’s really rather sick and twisted. The beautiful thing about Lori is that she tells it like it is and does what she can to make her mom’s life as pleasant as possible — even if it upsets other people, or makes them uncomfortable because they are witnessing the grotesque.

Raw. Grotesque. Dementia.

Painting a picture of dementia is something I’ve done using my mom. Other guest bloggers have mostly focused on their personal experience, their pain, their ability to weave this disease into their lives and making the impossible, possible. So while I tell stories about dementia using my mom, I wanted to paint another picture, using another soul……..in this case, Lori’s mom………. this is a great story and another portrait of the disease.

Thank you Lori for giving me permission to share, and good luck with the book! Please check out Alzheimer’s Speaks and don’t forget to check out her blog and add it to your blogroll!

The Mother of the Bride

By Patty Lien: This is a wonderful story written about my Mother attending a wedding a of good family friend.  Thanks Patty for writing it!

Dorothy has been a major part of my life since I was born.  She has as well, been a part of the lives of my children.  My parents were best friends to Dean and Dorothy; and they built their retirement homes side-by-side.  My parents passed away young, and my husband, children and I, ended up being neighbors to Dean and Dorothy.  It was Dorothy who hosted my own first bridal shower, and it was only natural that she was included in my daughters wedding preparations and celebration. She had watched her grow all the way from birth through college.

On the day of my daughters, Kelly’s wedding; the gals at Dorothy’s care center took special preparations in dressing her and fixing her hair.  All the while, she apparently told them about the wedding.  At the Catholic ceremony, Dorothy, who is Lutheran, wanted to receive communion.  And she did…not only from the priest, but from each of the four others distributing communion to the congregation as well. Right down the line she went, getting a Host from each of them.  And, as she turned to walk back to her pew, with her son Scott helping her navigate; she smiled and bestowed the “Queen Elizabeth” wave to the entire congregation as she passed. She visited and shook hands all the way back down the aisle.

After the ceremony, I went up to Dorothy and greeted her, “You look so pretty today Dorothy”, I said.  “Did you enjoy the ceremony?” Without missing a beat, she advised me that, “Of course I did.  I’m the Mother of the Bride.  Aren’t my children beautiful?  I love my children.”

To me, that was one of the “beautiful moments,” of the day.  Reality isn’t for an Alzheimer’s patient, necessarily what we perceive it to be. She was happy.  That was her reality. The wedding was about love.  Being loved, loving others, and sharing a moment with those people in your life that you love.  It did not matter that she was confused about which people were her children.  She had known each one of them since the day they were born.  But in that brief moment, when she was happy and celebrating…she knew she was a Mother.  She was a Mother who loved her children, and that made her happy.  This is what makes it a beautiful moment.  Her reality was complete.  She was surrounded by those who made her happy, safe, and loved.

And, if this is your reality at that moment…and you aren’t the Bride…you may as well be the next best thing!

>>Photo from Flickr, Photographer craigCloutier