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

Don’t Stop Asking About My Mom

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I have a message for my mother’s friends, family and acquaintances: She’s still alive.

My mother’s heart still beats. Though she might not be able to talk to you, walk with you, or share a laugh with you, she’s still here. She’s still alive.

If you spend any amount of time with her, you’ll quickly realize she’s here…………. and like most living, breathing human beings, she craves touch. Hold her hand. I do. Yes, it’s hard, especially when she yells out; I hate watching my mother’s face contort in such a way that it looks like she’s in pain. I know she can’t be……… but maybe, she knows. Maybe she knows she’s trapped inside a body that won’t follow her commands.

It’s a muggy Sunday afternoon when I visit my mom……….. it’s just after noon and she’s eating (or rather drinking) her lunch. The caregiver asks if I want to spoon-feed her the rest of her liquified meat.

Next time someone talks to you about the preservation of human life, try thinking about the thing that really matters at the end of the day: quality of life. Or how about this: DIGNITY.

Midway through her meal of watery green goop and off-white, milky muck, she chokes and coughs. Brownish goo comes flying out of her mouth and splatters all over my green shirt.

I start to feel angry……. not at her, rather at those who have forgotten her. Her family and friends………….

My mother did so much for so many people………. When the church would call, she would pray, she would volunteer to give communion to the sick, she would give of herself. When her family called with a crisis, she would pray, she would provide the means for them to literally have a better life…………. And now, she’s alone.

No one asks for her, really…………… On her birthday, there were no calls, no e-mails. Nothing. It was another day for the rest of the world.

After lunch, I take her back to her room. Her fingernails are too long………. I ask the nurse for a pair of clippers and start trimming. It isn’t long before my back starts to ache and my abdomen cramps just a little………. I’m hunched over, just inches away from her hand. Fingernails fly up and flick my face.

Her toenails are another challenge. They’re twisted……. they overlap and are stiff from lack of use………

I need to remember to bring nail polish remover next time. The gold paint I swiped over her toenails last spring still remains……………… was it last spring; has it been that long? Am I the only person who paints her nails? UGH.

My body twists and contorts so I can find just the right angle to trim her thick toenails. Mom is sound asleep. Good. I think she’d be yelling if she where awake.

She inhabits a place somewhere between life and death.

It’s a grotesque place.

By the time I leave, I have a headache and my blood is boiling. I feel nothing but hate and resentment. I know I should let it go…………………. After all, what’s that saying? Something about hatred poisons and hurts me, not them?

I don’t care. Shut up. Stupid quote. Nonsense. This is unforgivable. Where’s a vengeful God when you need one? Fire. Brimstone. Come on!

After a few days of stewing, the anger eventually subsides……………. is it anger? Maybe it’s hurt. Resentment? Rage? Jealously? Contempt? All of the above. I try to cut myself some slack……………… yes, I wish I could be more serene about her illness………….. but then, I think back to those darker days, and the anger bubbles up again. STOP.

I wonder if there is a heaven………………or a hell. I wonder what God will decide.

I wonder if He stopped asking about my mom, too.

 

Jan’s Story: Love Lost to the Long Goodbye of Alzheimer’s

A fantastically touching interview worth watching about early-onset Alzheimer’s disease. Award-winning CBS News Correspondent Barry Petersen talks about his book, Jan’s Story: Love lost to the long goodbye of Alzheimer’s, based on his journey with his wife Jan. Petersen talks about the changes in his wife’s personality, which started as early as 40, the reaction of family and friends when he started a new relationship after his wife was placed in a facility and his continued commitment to his wife.

5 Tips for Talking to Someone With Alzheimer’s Disease

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1. Diminish distractions.

2. Converse one-on-one.

3. Keep things simple.

4. Avoid arguments (this should be number 1).

5. Just keep talking.

I would also like to add:

6. Walk in their shoes.

7. Step into their world and speak their “language” (even if it makes no sense………………… my mom was only able to articulate herself using the words, “despierta America” and “la fruta”).

8. Take a deep breath if you get frustrated (because you probably will).

9. Talk to other family and friends about how to best communicate with your loved one. They might keep visiting if they feel like they’re actually helping or supporting the person with dementia.

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