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

Coping with Me

My boyfriend says I worry too much.

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

Case in point.

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

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

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

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

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

My pity party is boring.

Flickr pic by Loca Luna

It’s All About Me And What Could Have Been If It Weren’t For You

I try hard not to dwell on what could have been. It’s an easy enough trap to fall into for someone like me who already suffers from “future living disorder”… I worry about what may happen, what could happen and what I hope happens, instead of focusing on the here and now. There is no cure for this except forcing myself to stay grounded—in one place. Phoenix. With my family. In a 748 square foot studio. With very high ceilings so I don’t feel “trapped.” That’s my other ailment, “trapiditis” or the fear of being stuck. I usually move to remedy that, except this time I can’t (or won’t).

Since I can’t jump ahead into my non-existent future, I’ve been looking back—at what could have been. So what’s with all the time travel? I guess the fact that everyone is having babies. Baby girls (OK, there’s one boy coming sometime next year). Everyone. Seriously. It seems each week, I’m hearing that someone is having a girl and they’re all due around February or March… around my birthday (with the exception of one baby girl due early next year—congrats Nedra!)

I always wanted kids. I dreamed of a large family, probably because I came from a family of three—2 parents and me. I remember thinking at one point that I wanted to be a mom by 26. I’m 33. Totally missed that boat. When I was 25, I thought I had met the one. We talked about having kids. A boy and a girl. Perfect. We even named them, but then that’s what you do when you’re smitten with one another, contemplating the perfect life together. Perfect.

Two years later, things had changed and he no longer wanted children. I convinced myself that I didn’t either. And as my mother’s disease became all too evident, it just seemed like having kids would be too much… even if we were going in that direction, but we weren’t so it served as proof that I had made the right decision. No kids. Besides, how could I care for a baby and help my dad with my mom? What if my mom hugged my baby too hard and killed it? What if my mom lost my baby? What if my mom dropped or even microwaved my baby, like she mircrowaves everything else!?

I can’t even cope with my mom’s disease, how could I possibly deal with a child?

That’s what I tell myself. To this very day. Of course, I’m no longer with the one and so (technically) the baby door is once again open, well cracked open.

Or not. ENTER the present moment (stage left)

I’m 33. Tick tock.

I’m not married.

I can’t afford a baby.

I have no help in the form of family, except my dad who is busy de-raising my mom.

Slightly ajar just got slammed.

So I don’t think about birthing babies and I try to beat it into my subconscious that a child would not be a good idea. I think it’s working. I once even went to a psychic and asked her about children—she said she doesn’t see kids in my future. More evidence. It’s literally not in the cards.

Fast Forward. Present moment. On the laptop. Typing. And I can honestly say, I don’t know if I want a baby anymore. I’m TBD.

Instead, what I think about is what could have been. Maybe I should have ended my relationship when he said he didn’t want kids. Maybe I should have given him an ultimatum—I want kids. It’s me and our two non-existent children or nothing.

Maybe if I had, I would be a parent now. Maybe I would be having my second or third baby—creating a that large family of my dreams in a beautiful house with a large back yard and a partner that teaches our kids how to play some kind of sport or something.

Maybe I would not be sitting here alone on my Macy’s sofa thinking about what could have been and feeling a tremendous sense of anger and frustration at him, at my mother, at myself, at the hand I’ve been dealt.

>>Flickr pic by gabi_menashe

From God to Target With Love

I nearly lost it on Sunday. Nearly lost what remaining droplets of patience I had. Mom was especially hyper the other day, and, of course, incredibly eager to talk to her boyfriend: The Priest…………. over and over and over again about the same topic: coming over to dinner. My husband wants you to eat the fruit with us. Tonight! You come tonight!!!

Before Mass. As he’s approaching the alter. During Communion. As he’s exiting the alter. Outside.

Damn you short term memory!

However, what caused me to very nearly step off the ledge was the fact that the church decided to celebrate the priest’s 15 years commitment to the most holy universal church with carrot cake. That’s nice. What a surprise! And what a surprise when a gaggle of little children ran up to the front of the church to hug him.

In theory, this would be positively adorable. In theory. The problem is, mom loves the little ones and she loves nothing more than to tell them that she loves them. Thing is, instead of saying, “I luf you,” she grabs their little—still growing and therefore delicate—hands and yells, “I LUF YOU VERY MUCH. I LUF YOU”.

This can be scary if you’re only 3 or 4 or 5 years old. This is scary when you’re 33………….. mostly because I think of the freaked out parent who is going to one day come over and say something to her and to me about grabbing their little, still developing child (she has a firm grasp)—thankfully, the Hispanic community is too polite to say anything overtly rude. Mostly, they just stare and the younger ones just laugh. UGH!

So I was getting irritated. And irritation, when it comes to my beloved mother, leads to me utilize reason as a means to communicate with her. I was going all out LOGIC with her. I know, absolutely stupid and a complete emotional drain, which then frustrates me, angers me and makes me want to cry. Thing is, I can’t help it. I want her to understand that there are consequences to her actions.

Explain to her the ramifications of her actions.

Ask her to NOT grab those sweet, FRAGILE, little hands, which could break if you squeeze too hard!


This typically results in her a) laughing at me or b) telling me that no, they like it and she’s going to do it anyway, so fuck off (added for effect, it’s not in her limited vocabulary. She would probably say, FRUIT OFF).

After a few lame attempts to restrain her. Several LONG STARES from members of the church, we left and headed to Target to decompress.

Not before rewarding her bad behavior with nachos…………… 4 months ago, she used to love the fake cheese. Last Sunday she hated it. Weird.

Target. Stay on Target.

I love you Target.

She knows we go to Target for several reasons: to walk around/to spit on the floor/to spend some quality time together/to give dad some extra alone time.

The one thing I will say is that my patience meter typically refills after a few moments………………………….. or once I walk through the hallowed doors of Target.

Target is also one of those places where we’ve had some sweet, tender moments (believe it or not………. you buy toilet paper there; I bond with mom) and last Sunday was one of them.

I often don’t get “mom” moments. So when I do, I find them to be incredibly tender and sweet—it’s not typical, and maybe more mother/daughter in the sense that I’m the mother and she’s the little daughter offering fashion advice………………………… I was trying on a dress and she was actually doing a very good job of helping me decide whether to buy it. I tried on like 3 different garments and she was standing there telling me in her own way that it doesn’t look right or that it’s a good fit. She was very helpful and just a great shopping companion that day.

Funny thing is, my mom used to be a shopaholic. The woman LOVED to shop. She would buy clothes just because they were on sale! Would she wear them. No. But she bought them, because by God, it was on SALE! She still has two closets dedicated to her clothes……………… but dementia has taken away that joy. She hates trying on clothes and she only wears a few outfits, mostly she likes to wear this one particular Kelly Green dress that she bought for my cousin Lisa’s wedding in 1996.

It’s her favorite dress. Like in the universe.

>>Flickr pic by mergrje

“Mommy, she’s crazy!”

“Mommy, she’s crazy!”

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