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

Little Susan and her beautiful mom

I met Susan over a year ago at our support group in New York City. She and I were both pretty new to the support group and we got each other — could appreciate the other’s story, understand the overwhelming sadness. Going to that support group, I think we both felt uncomfortable, yet relieved that we weren’t alone, yet scared and horrified that we were actually in this situation.  Susan’s story always makes me sad. Susan is an only child and the weight of her mom’s disease falls squarely on HER shoulders. She is it. She makes the decisions. She carries the all the stress. She makes all of the sacrifices. She bears all of the guilt. She travels up to her mom’s home in Massachusetts often, but despite the heaviness of her story, Susan is determined to have a life and is on her way to finding some calm. She is finally getting her mom’s care in order with a live-in and now she may be able to  enjoy those precious, simple moments (like reading a book, going for a walk, those first moments after you wake up) without stress, guilt and anxiety taunting her. Not always easy, remember balance for many of us isn’t always attainable.

Thank you Susan for taking the time to guest blog. I hope her story touches you as it does me. She is one tough mama and I love her! KAT

I am the sole caregiver for my mother who has Alzheimer’s.  I am not going to lie.  It is the hardest thing I have ever had to deal with in my life.  It is heartbreaking, exhausting mentally and physically and there is no one else to help me.  Most of my friends, as hard as they try, don’t understand.  I didn’t understand either how difficult this journey would be until I was in the middle of it.

I was urged by some friends to join a support group when my mother first got diagnosed and I didn’t.  I kept telling myself, “My Mom isn’t as bad as those people, she could stay like this for the next 10 years.  I will deal with it then.  She is progressing slowly”.  The list goes on.   When I did finally join it was because I was so depressed and felt so isolated that I was scared for my own mental health and ability to continue to deal with it alone.

Now I can say, I wish that I hadn’t waited to join.  It is my lifeline and I don’t think I could survive without it.  It is remarkable how good it is to be with people who are going through same thing you are.  It makes it so much easier.    There are people whose parents are further along than my mom and can tell me what their experience during that particular phase was like, or what came next.  There are people who are going through exactly what you are going through and that makes it seem easier somehow.  There are people who are at the end of the disease and you can see that somehow they made it and you can too.

I have been able to find the humor (and there is humor) and the joy( and there are moments of that too).  The need to laugh is so great.  I can’t begin to explain what a release that is.  If you find one thing through this, find the moments to laugh.  Share the laughter with others.  It helps you to heal and gives you a break from the enormous sorrow.

I also think support groups are great for the practical aspects of this disease.  You need to know what your options are financially.  You need to take control of assets and finances early on so that Medicaid doesn’t take everything your parents worked their entire life for.  Don’t stay in denial like I did.  Act fast and things will be easier when the disease gets harder.

Get in with an eldercare lawyer as soon as possible.  Most states now have a 5 year look back period.  It seems like a long time, but it’s not.  People in your group can help you with names of lawyers and nursing homes and daycare centers and home health aids.  It’s great to have those resources from people that are going through it.  They know better than anyone.

At the end of the day, I am still making all the decisions by myself, but having a support group makes me feel not so alone in the world.  I wish I had had the courage to join a group when she first got diagnosed.  If I had one piece of advice it would be this:  don’t wait until things get bad to join a support group.  Do it as soon as you can so that you can start to make plans for your future and the future of the person you are caring for.  It is the most important thing you will do for yourself along this journey.

Worse yet, I can’t remember what she was like before she got sick. I’ve placed old black and white photos of her on my bookshelf — mostly because I’m hoping the images will trigger something, anything in me to remind me that she’s still my mom… she was so beautiful. It’s strange. She’s only been sick for maybe four or five years, yet my memories of her as my mom are fading quickly.

I found this entry on the Alzheimer’s Association’s amazing website. They’ve started collecting stories from people living with this disease… I think we should read their words. We should understand what they are going through… the fear, the anxiety, the loss of precious memories, basic freedoms. This is a devastating disease, but to walk a mile in their shoes is something else entirely. It’s tragic. But we must. We must try to understand, truly understand what they’re going through and to look beyond the dementia.

Tracy
Living with dementia: 5 years

Read more stories and take a walk in their shoes…