Interview With Max Wallack, Author of “Why Did Grandma Put Her Underwear in the Refrigerator?”

Courtesy of Max Wallack
Courtesy of Max Wallack

My interview with Max Wallack, founder of Puzzles To Remember, an organization that provides puzzles to nursing homes that care for Alzheimer’s and dementia patients, proves that no matter how old you are, you can make a huge difference in the fight against Alzheimer’s disease and dementias.

Wallack first witnessed the devastating effects of Alzheimer’s disease when he was just a child. His great-grandmother suffered from AD, and it was watching her descent into the darkness that prompted Wallack to do something about it. When he was 12, he started collecting and donating puzzles to facilities that cared for Alzheimer’s patients. And when he was 14, he worked with a philanthropic group to create puzzles that were geared toward patients with memory loss. Today, he’s a student at Boston University and a research intern in the Molecular Psychiatry and Aging Laboratory in the Department of Pharmacology and Experimental Therapeutics at BU’s School of Medicine.

His latest endeavor is a children’s book that he co-authored with Carolyn Given entitled, “Why Did Grandma Put Her Underwear in the Refrigerator? An Explanation of Alzheimer’s Disease For Children.”

Below, Wallack talks about the book, his advocacy work and how you — and your child — can become advocates and help #ENDALZ!

You’re incredibly active in the world of Alzheimer’s and dementia… What spurred this interest and what are you working on today? 

I have always been interested in science and in inventing.  I won my first invention contest at the age of 7 when I made a special step to help elderly people get into minivans.  I made it for my great-grandmother, who accompanied me and demonstrated the step at the awards ceremony in Chicago.  As I grew older, my interest in science, and specifically medicine, increased.  Of course, this was spurred on by Great Grams progression into Alzheimer’s disease.  I read more and more about this subject.

Today, I am very involved in Alzheimer’s research.  An article I coauthored will appear in September’s Journal of Alzheimer’s Disease, and I am in the process of writing up several additional articles.  My work has focused on three areas: 1. Enzymes that can be used as biomarkers to test for early AD, including the differences in results between males and females  2. The effects of ACE inhibitors on AD patients  and   3. The use of a naturally occurring hormone, already approved for use with diabetic patients, which seems to be capable of clearing significant amounts of ABeta from the brains of transgenic mice, and we are already beginning human trials with this hormone.

Talk to me about the founding of your organization Puzzles to Remember — what is it, what inspired its creation and how old were you when you decided to create PTR?

During the last few months of Great Grams’ life she was in and out of hospitals and nursing facilities.  When I visited her in those facilities, I noticed that patients who were working on jigsaw puzzles were calmer and less agitated.  I researched this, and I found that cognitive activities, such as jigsaw puzzles, can help extend the time during which an AD remains functional in society.  I decided to start collecting puzzles and donate them to the facilities that had cared for Great Grams.  Soon, I realized I needed a means of accepting donations so that I could send puzzles to more distant facilities, and, when I was 12, I applied for 501c3 status. I also found that there was a dearth of puzzles that were most suitable for Alzheimer’s patients, so I contacted Springbok Puzzles.  They had previously donated to my cause.  Springbok is a very philanthropic company, and together we developed the Springbok Puzzles To Remember. These puzzles, developed in 2010, when I was 14, have 12 or 36 large sized pieces with bright colors and memory provoking themes.  To date, I have distributed over 24,500 puzzles to over 2,050 facilities around the world.

There are many young people who have been touched by Alzheimer’s disease and other dementias. What advice would you give them if they wanted to become advocates and make a difference in the lives of those suffering from the disease? How can they start?

This is the same question I get asked frequently about philanthropy.  My answer is, start small.  Do something to help Alzheimer’s patients or caregivers.  Visit a facility.  Join a group for Alzheimer’s patients or caregivers. Help out in a memory café; there are many of those just being set up.  Sign up for an Alzheimer’s Walk and help raise funds.  They can do just one of these things, or as many as they wish.  The point is to just get started.

When did you decide it was time to write a book about dementia for young kids? Was it your idea or were you approached?

I have been writing this book in my head for years.  One day I asked Carolyn Given, my former middle school English teacher, if she would coauthor such a book with me.  She said she would, and, within two hours, I wrote and sent her a completed first draft.  Of course, the book underwent several revisions after that, but I was able to write it so quickly because I had thought about it for so long.

Courtesy of Max Wallack
Courtesy of Max Wallack

Talk to me about the scenes you witnessed growing up with a great grandmother living with dementia, and what, if anything, ended up in this book?

As part of her AD, Great Grams suffered from extreme paranoia.  The story I tell most often is that when my whole family visited Hawaii a few months before Great Grams’ death, I got to meet many, many native Hawaiians. Apparently, when someone goes up to a Honolulu police officer and says “those people are trying to kill me,” they are required to do an investigation. So, when Great Grams got out of her wheelchair and ran to the police officer with that story, I got to meet most of the Honolulu police force!

Great Grams also had many fears.  Many fears are represented in the book, although they might not be identical to the ones Great Grams experienced. The scene of the police officers bringing Great Grams home is one that is emblazoned in my mind.  It happened more than once.

Through the Alzheimer’s Reading Room, I have interacted with Alzheimer’s caregivers for many years now, and I have formed great friendships with some of them.  Some of the scenes in the book are based on the experiences of a family in New York City that has a grandmother with AD and a 6-year-old daughter that has assumed a caregiver role.  Some of the illustrations were actually redrawn from photos of that family, including the one with the little girl feeding her grandmother off a red plate.

Talk to me about the scenes you and your co-author came up with and how they came to be. What messages did you want to your young audience to come away with?

Some scenes were based upon my experiences, some were based upon the NYC family’s experiences, and others were developed to convey messages about Alzheimer’s disease.  I wanted to write a book that would not be “dark” or frightening, as many other AD books for children seemed to me.  That is one reason that I asked for Carolyn Given’s help.  I knew she would keep the book from becoming too dark, and perhaps even add a bit of humor.  I wanted the book to actually provide children with some helpful coping mechanisms, something which I could find in no other book.  I wanted to assure children that they were not the cause of any aspect of this disease and that this disease is not contagious.  I wanted to touch upon some difficult topics such as incontinence and wandering in a way which children would understand. I also wanted to provide a simple understandable visual image of what is taking place in the brain of someone with AD by showing a nerve cell throwing and catching a message both in a healthy cell and in one with AD.

I love the title of the book. What inspired it?

Alzheimer’s patients often place articles in strange places.  I just was trying to present an image that children might find amusing.

What do you hope to achieve with this book? Is it geared towards kids who have a parent or grandparent or great grandparent living with dementia or is this something you hope all kids will read?

When I wrote the book, I wrote it expecting it to be just for children.  What has surprised me is the large number of reviews that say that the book has a lot to offer for adults, as well.

I wrote the book to help child caregivers.  However, with the growing number of AD patients, almost every family is touched by this disease in some way.  I think all children can benefit from reading this book. In the case of the NYC family, the children of their neighbors have read the book and now interact much more constructively with the grandmother. Striving to understand other people makes us more empathetic and more kind as individuals.

What is your favorite part of the book?

My favorite part of the book is when Julie decides that she might become a scientist and help find a treatment or cure for AD.  I think it is very important to provide hope for the future.

The drawing of three scientists in the lab is actually a drawing of me, Dr. Qiu, my mentor and Principal Investigator, and Dr. Zhu my mentor and co-worker.

I also think it was important to mention clinical trials at the end of the book. Willingness to participate in clinical trials is a necessity in order for us to find treatments and/or cures.

How have children and their parents received this book?

The response to the book, from everyone, has been just wonderful.  Parents have used the book almost as a manual to explain specific behaviors that the child is witnessing.  I have heard that children have been able to interact much more constructively once provided with some useful coping mechanisms.  I have even received notes of appreciation from 6 year olds.

I am surprised and pleased that word about the book has spread around the world.  A company in Singapore that makes children’s toys and assistive aids for seniors contacted me and wants to purchase 40 books to distribute to facilities there.  Apparently, information about Alzheimer’s disease is not very easily available in Singapore.  They hope to use this book to bring light and attention to this disease.

One of the comments I hear most frequently is, “This book really needs to be translated into . . .”

What advice would you give to a young person watching this disease unfold right before their eyes? 

  • No part of it is your fault and you cannot catch this disease.
  • The person with AD is the same person they have always been.  They have not turned into someone else.  You can still enjoy many interactions with them.  There is still “more there” than may be easily apparent.  Art and music are great avenues for interactions.
  • Many people are working very hard to try to find treatments and cures. Maybe you can help.

What’s next for Max Wallack?

I will continue working in the research lab.  I love my work there, and I learn more there than anywhere else.  I will continue my studies at Boston University and then, hopefully, attend medical school and prepare myself to become a Geriatric Psychiatrist, working with patients and their caregivers.

For more information about Max Wallack, his new book and Puzzles To Remember, visit www.puzzlestoremember.org

I’m Walking on The Longest Day & I Could Use Your Help

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On June 21, 2013, I will be participating in The Longest Day… of course, I need your help. To pledge your support, please make a donation by clicking here.

Thanks so much in advance!

There Are NO Alzheimer’s or Dementia Survivors. None. Zero. Zip. Nil. That’s a Problem.

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Benjamin Button Effect: What Do You Do When Your Mom Cries Out Like a Baby?

3728905329_4b47a1b5cc_bIt was around 8pm last night when I started watching some of the videos I had taken of my mom. In the more recent ones, she is yelling — a lot. That’s all she can do. She can’t talk. I take these videos because, I feel like people don’t believe me when I say, ‘I think she’s in pain.’ And because past is prologue — I once had to show my video of her crying to the nurse at her home and the hospice team in order for them to give her morphine and up her Haldol — I take videos so I am always armed with evidence.

And they wonder why caregivers lose their minds…………………………

As I watched these videos of her yelling, her face twisted and anguished, I told my boyfriend who was watching these 30 second snippets with me, that someone in my support group said that mom probably has the mental awareness (she used a different term, I think) of a baby.

Haven’t you ever seen a baby cry? 

No. I mean yes, but not really. And if I happen to be around someone with a baby (which is rare), I give them back as soon as they take that long inhale right before the wailing commences…… and then I walk away. The fact of the matter is, I never grew up with or around babies.

I’m certain, as a kid, all of my imaginary friends were successful professionals in their 30s.

So last night, as I watched mom yell…. I pulled up YouTube and typed, “crying babies.” I probably watched four or five videos of little sweet faces, completely twisting and turning beat red, as they cried…….. puffy lips quivering, eyes squinting, tears rolling down their tiny faces. Believe it or not, I could actually see a little bit of my mother in those faces. Her mouth turns upside down into a frown, her eyes squint and she’ll start yelling………………………. Sometimes a hug will calm her down; sometimes you have to let her yell it out. My mother can’t tell me what’s wrong, so you do what you would do with a baby — you do a mental checklist:

Is she wet?

Is she hungry?

Is she thirsty?

Is she comfortable?

Is the music too loud?

Is she cold?

I always joke that if I have a baby — barring any health issues — it’s going to be a walk in the park. A total breeze. After all, you can pick them up to comfort them, You can take them with you in one of those neat backpack thingies, you can arrange them yourself so you know they’re comfortable, their poop is much more manageable (even cute?), diapers are much easier to get on and off, bathing is a no-brainer and, and up until a certain age, you’re stronger than they are, and best of all, they eventually learn to tell you what they need, and maybe, they’ll even make you laugh……………….. and that’s what makes it all worth it.

Or at least that’s what I think. I have three cats and a dog.

There are very few joys attached to reverse parenting. You have to work very hard to find the funny. You also have to mentally force yourself to view your circumstances differently (or die trying, because this disease will kill you, too): This is a choice, this is a priviledge to help my loved on on this horrible journey, I get to do this, I get to play this role in my parent’s life. This will pass. 

It’s also a very lonely experience. Unlike parenting a newborn, very few people come out to celebrate your achievements — hey, I heard your mom didn’t spit in church today! That’s AWESOME! Here are some flowers — in fact, I feel like as each day turns into the next, seasons change, birthdays come and go, babies are born, babies learn how to walk and talk, you’re mostly forgotten about. People move on. That’s life. That’s the point of life.

We’re not meant to live in some damned and demented limbo-land.

And you people want to live to be 150 years old.

The mere thought of living to be 150 years old makes me want to cry.

>>Flickr pic by Chalky Lives

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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You’re Not In This Alone

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The Alzheimer’s Association 24/7 Helpline provides information and support to all those who HELP! Call TOLL-FREE anytime day or night at 1.800.272.3900

A Letter to Those Businesses And Professionals Who Make Dementia Even More Agonizing

Dear hospice and nursing home (names of providers removed because I have enough problems, frankly),

Thank you for making late/end stage dementia even more awful by not coordinating your care of my mom, by failing to communicate with me, by making me feel like I’m making poor decisions on her behalf, by one day telling me, no, she can’t feel hunger (hospice) and the next day, telling me, well, she could feel hungry (home)Thank you hospice and nursing home for your conflicting care and for not informing your staff of little changes. Thank you nursing home for ignoring me month after month when I begged you to lower the dosage of her psych medications……………………. it was good to see that you finally took action after she fell flat on her face because she was so zonked out. Thank you for the confusion, thank you for making me feel like the bad guy. Thank you for making me re-tell the story of how we’ve been treated over the last several years by psychiatrists who would dope up my mom to keep her from screaming (yes, this is how we treat our demented elderly, folks). Thank you for reminding me that I am alone in this. Thank you for making it clear that this — dementia and long term care — is a business and a lucrative one at that (especially if you go the private pay-only route).

Thank you knocking me down yesterday……………….. because now I’m back up on my feet. Slightly bloodied (nice kick to the heart, by the way), and ready to get the shit kicked out of me yet again, because I am right and you are wrong.

I know my mother.

One more thing: Thank you for reminding me that part of my duty is to one day help government work toward and eventually craft death with dignity legislation………………… we are so quick to fight for life, but we lack the courage to face death and say ENOUGH.

To slowly die sitting in your own feces, unable to eat, speak, walk or do anything that makes us human, does not guarantee you a place in heaven. It simply serves as a reminder that we are still living in dark ages.

I expect to be burned at the stake for that.

Sincerely,

The daughter who asks too many questions, the daughter who fights and pushes so she can get her mom the right care, the daughter who has endured the stares and the whispers, the daughter who diagnosed her own mom when the doctors failed to, the daughter who has lost a lot ( A LOT) of sleep over the past 8 years, the daughter who visits her mom almost daily, the daughter who holds her mom’s hand, the daughter who makes the really hard decisions no one ever wants to make, the daughter who is more often than not dismissed by medical professionals, the daughter who has to fight so her mother can have just a drop of dignity.

Mom in a Onesie….

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Stylish. Fabulous. Simply splendid. Otherwise known as dementia-ware. This look is available only at Buck & Buck for all of your Alzheimer’s and other demented needs……….

Day One… 2012

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She knows me……………… Hanging with mom in bed……… Like we used to do………….it’s 2012…. Another day. Another moment lost. I call it Walking Grief…………

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

Advocacy Work or Advocacy Work?

I want to help people like me. People who are doggy paddling their way through this horrible mess. I suppose I feel like my dad and I have had to figure things out the really, really hard way……. so why not pass along the lessons we’ve learned.

TIP#4,592,569: When you’re with your parent, live in their world, talk to them in their language and carry wet wipes. Always carry wet wipes. 

That’s sort of the point of this blog. Share my story. Pass along the info I’ve learned……………….. make life just a little bit easier for someone else. Stuff like that.

A few months ago, I joined a group called YAAA! Young Advocates for the Alzheimer’s Association. The group was formed to advocate change at the federal level……………………… this means contacting your local representative, talking to them about the disease, sharing your story, etc…………………….. I’ve written to my representative a few times………….. to very little avail. I initially received a kind response from his press person—a good sign. I emailed her maybe 2 or 3 times since that first email and in her last response, she told me to send my messages to their general email address………………. from there, it will be distributed to the appropriate person (hopefully, their healthcare liaison………… still, I wonder if the intern will see my name and just hit “delete”).

Maybe Justice for the demented is demented herself. And blind. Or something.

So, I’m frustrated. OK, and a little angry. I pay taxes. I am a law abiding citizen. I have never been a burden to the system. So when I actually need this person to pay attention to me, I’m redirected to a “Write Your Rep!” link. Really? Seriously?

Dude, why don’t you meet my mother? Why don’t you see how draining this disease is on one of your constituents? Why don’t you walk in our shoes for an hour and try to understand why we need funding for this disease and other types of dementias.

I stopped writing to this person. I keep thinking I need to just keep drafting emails and shooting them out, but then I just become angry. I am considering leaving YAAA! I don’t think I have the patience to affect change like this. My patience goes directly to my mother; not to some overpaid congressman/woman whose job, let’s face it, is to get re-elected.

Maybe my purposes is to actually talk to people who are living this nightmare, instead of sending emails to blackhole@house.gov.

I know on some level I’m being bratty and impatient about this. It takes years to make change happen……………… Still, when I think about what our elected officials bicker about, who they pander to, and the issues that actually get people out to vote (Gay marriage? Seriously? That gets you out to vote? Why do you care if two tax payers want to get hitched? And who are you to play judge……….. why not worry about something that may actually impact you directly, like your health, and the fact that you may actually develop something like Alzheimer’s!), I lose faith in the system. I lose faith in government. I lose faith in our people………………………………. No wonder we are the laughing stock in so many countries, our priorities are truly jacked. We don’t care about OUR people. The people are last. And the people don’t care that they are last!

I’m tired of fighting. I fight for my mother on a pretty regular basis. I fight for information. I fight for her right to be heard, for her to be treated with some respect. I educate people about her—usually because she just yelled DESPIERTA AMERICA and I sort of have to explain why she just yelled bloody murder, but still……………………. so when I have to fight for a congressman to do his job and meet his people, I just want to quit. I just don’t know if I have the energy to write and write and write emails for a cause that will take years to manifest……………………… and in truth, I wonder, will more money make a difference in our loved one’s everyday life? I’m talking quality of life here……………….. Will there be more programs dedicated to people with Alzheimer’s or Frontotemporal dementia…………… Will there be training for healthcare professionals so they understand how to deal with someone like my mom versus someone like your mom? Will there be more programs designed to support the caregivers?

I don’t know what I’m going to do. I don’t know what I can do.

>>Flickr pic by Mjecker

Ramblings of a Demented Daughter… Floating Thoughts

I don’t know if I’m a good daughter…. My two cousins and aunt (mom’s sister and her two nephews)  blasted me a few months ago because of the name of the blog… My DEMENTED Mom. The word demented when translated into Spanish is apparently a not very kind word. I can’t say much about that. I didn’t know it was a wretched word in Spanish.

Alas, my mother tongue is English, the blog is in English and according to Merriam-Webster, DEMENTED has two meanings:

1. mad, insane
2. suffering from or exhibiting cognitive dementia

My mother fits both definitions quite nicely. The assault on my use of the word was so incredibly hurtful. They attacked me, the blog and from my point of view, my role as her daughter. I felt like such a horrible person, a rancid daughter, clumsy, baroquely grotesque, wretched and positively cheap……………..I knew it was a strong word……. but the name of my blog was never meant to disparage my mom or her memory………. she is demented. She is sometimes mad. She does suffer from cognitive dementia.

I love my mom.

I miss my mom.

This morning I woke up wishing that I had started wearing a purse when I was younger—when she told me too. Silly, random pre-dawn, pre-caffeinated thought. She used to tell me that I should wear a purse. That a girl my age should wear purse. I hated purses then (love ’em now), but I wish I just did what she wanted me to do. It would have made her happy.

I no longer have any relationship with these individuals—there’s no point. That and I’m stubborn but mostly I don’t think there is a reason to resume relations with people who just don’t get it. Who never will. I don’t know if I’m sad about that…… maybe more disappointed…………. but for me, family goes beyond blood lines. Natalie.

Cheryl.

Lindsay.

Petra.

And of course, my Jon.

New topic.

I talked to Sandra Gonzalez at the Alzheimer’s Associate Desert Southwest Chapter. My mom hates baths. Sandra was sharing some tips for making bath time a little easier…. Play soothing music. Prepare her bath before she gets near the bathroom (apparently the noise may be amplified for those suffering from dementia). My mom screams. She yells, PORQUE ME PONES? PORQUE ME PONES?

That’s dementia for, WHY ARE YOU DOING THIS TO ME? YOU KNOW I HATE WATER. PUT MY CLOTHES BACK ON. I SWEAR TO GOD IF YOU PUT ME IN THE WATER I’M GOING TO SCREAM. YOU’RE REALLY PISSING ME OFF.

We also talked about communication…………. communicating with my mom, understanding her and talking to her in her own language. My mom has less than a handful of phrases that she uses and repeats over and over….. I use the same phrases to talk to her.

Oddly, she understands me. No idea what she thinks I’m saying, but she responds….. in her own demented language. I am in her world. Every time I visit my mom, I step into her world, I engage her……….. I “allow” her to shop lift………. I listen to her. I paint her nails hot pink. I clip her finger and toe nails. I dress her sometimes—something I actually like to do……. granted she ended up with a pair of Converse One Stars, but she likes them and I own the same pair (I like it when we match…………… it’s my thing).

 

Tomorrow, March 25, is my mom’s birthday. She’ll be 73.

 

>>Flickr pic from Mariel B

Show Me Your Papers

Random morning, pre-work thought……….. in Arizona, we’re going back and forth about SB1070, a bill that would allow law enforcement to ask an individual for his or her documents proving that he or she should be in the country LEGALLY. A big brewhaha.

But this got me thinking…… as people fret over the bill and the resources spent on illegals who use services for citizens or legal residents, I started thinking about the FINANCIAL toll dementia and Alzheimer’s disease is going to take at the federal, state and local levels… you think your state has problems now?

STATS:

With a rapidly aging baby boomer population, Alzheimer’s will continue to impact more lives.

There are about 10.9 million UNPAID caregivers.

To date, $172 BILLION in annual costs.

10 million baby boomers will develop Alzheimer’s in their lifetime. Imagine everyone in Manhattan PLUS another 2 million developing the disease…. there’s your 10 mil………

This is not a short term disease. You don’t die within a matter of months…. Once diagnosed, you could live for 10 years or longer… most caregivers or FAMILY shoulder the brunt of the responsibility. This amounts to time off work. Doctor’s visits. medication that is not fully covered. Home health aids. The toll on the caregiver is devastating. Stress. Illness. Something to ponder as we worry about the little things………

A New Friend or Speaking of Alzheimer’s (dot, dot, dot)

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