Max W. - From Child to Caregiver to Alzheimer's Researcher and Advocate
I was still very young when I first decided to pursue a career in medicine. My early experiences helped me grasp the importance of what I might accomplish if I could succeed at practicing medicine with compassion. I can still recall, at the age of nine, with sleepy eyes, taking my post for the night. It was my turn to sleep on the floor at the door to Great Grams’ room and to sound the alarm if she should try to escape. Great Grams had made several previous escapes, once making it down the hill to the corner, flagging down a truck, and climbing inside, convinced that her family was trying to kill her.
That night, years of memories danced in my dreams, most of them good, but Great Grams had no good memories to sustain her. The last thing in the world I wanted was to have her sent to a nursing home; we had promised that would never happen. It wasn’t her forgetfulness, but rather her insurmountable paranoia that affected every fiber of our lives. Certainly, it was understandable. If you can’t remember moving an item, then, someone else must have moved it. If you can’t remember what your husband looked like, then perhaps he is that man that someone has snatched away. If you can’t remember money in the bank, then all you are left with in life are the few dollars in your purse, and Great Grams held on to that purse day and night.
When I was a young child, my great grandmother had been my best friend. Almost ninety years my senior, she and I played together like brother and sister, sharing toys, and even vying for parental affection. We shared an unusual relationship, each feeling responsible for the other. Afflicted with Alzheimer’s disease, sometimes Great Grams was an adult. At those times, she advised me, protected me, and expressed concern for me. At other times, I was the adult, watching her as we crossed the street, even “bubbie sitting” for her when my parents had to go out. I grew up embracing these responsibilities. As Great Grams became more child-like, I became a caregiver.
During the last year of her life, my great grandmother spent time going in and out of several hospital dementia wards, most often for the urinary tract infections that so often accompany incontinence. Upon visiting her in these settings, I noticed that patients who were working on jigsaw puzzles seemed calmer than their frequently agitated peers. I went to the library to read about Alzheimer’s disease, and I learned that staying mentally active can help postpone the point at which an Alzheimer’s patient is no longer functional in society.
After Great Grams passed away in 2007, I decided to collect jigsaw puzzles and distribute them to the facilities that had helped care for her. I contacted puzzle manufacturers and I placed collection bins in local libraries and businesses, and soon puzzles began to accumulate. Often, when I brought these puzzles to dementia facilities, I would stay a while and interact with the patients. It always gave me a good feeling to put smiles on their faces. Things were going so well that I decided to form a 501(c)3 organization, so that I could accept tax-free donations to cover the cost of shipping the puzzles to more distant facilities. I found that completing those 76 pages of forms was a daunting task for a twelve year old, but I was driven, by what I had experienced with Great Grams, to make a difference in the lives of as many Alzheimer’s patients as possible.
In 2008, Puzzles To Remember became a 501(c)3 organization, and I began shipping puzzles, free, to dementia facilities. I soon realized that many of the puzzles that were being donated were not well-suited to the needs of Alzheimer’s patients. Most had juvenile themes, and even adults with Alzheimer’s are still adults who do not relate to puzzles about Sponge Bob and Dora. Many puzzles had too many pieces or pieces too small to be handled by this population. I decided to contact a puzzle manufacturer and plead my case for more appropriate puzzles, and, in 2010, Springbok PuzzlesToRemember were born. These puzzles have 12 or 36 large-sized, brightly colored pieces, with memory-provoking themes. They have been widely praised as beneficial for Alzheimer’s patients, and they are being used in many Memory Cafes. I frequently receive photos of smiling faces, as Alzheimer’s patients encounter an often elusive feeling of success. Since 2008, I have distributed over 26,500 puzzles, worth over $200,000, to over 2100 Alzheimer’s facilities around the world.
Because, for almost all of the duration of her illness, my family kept Great Grams at home with us, instead of in a nursing home, I was confronted daily with her needs. I kept thinking about and reading about Alzheimer’s disease. It was becoming clearer and clearer to me that I wanted to spend my life helping Alzheimer’s patients and their caregivers.
From age 8 to 10, I was assuming more and more responsibility for Great Grams. By the time I was 10, she was in and out of hospital geriatric wards. She, like 40% of individuals with Alzheimer’s disease and dementia, was always trying to escape. I guess if someone doesn’t recognize their surroundings, so they always think they are in a strange, unfamiliar place, they are going to keep trying to escape and go home. That’s what Great Grams did. However, this meant taking turns sleeping on the floor at the door to Great Grams’ room. I spent many nights there. Great Grams wasn’t just a wanderer as many Alzheimer’s patients are, she was an escapist. She would actually plan her escapes, many times going to sleep with her underclothes and slip on under her nightgown so that she could make a faster escape. Once she actually did get out, early in the morning. In her 90’s, with a bad leg, she made it down the hill, to the corner of a major street, flagged down a truck driver and told him we were trying to kill her, and she convinced him to let her climb into her truck. Thankfully, he and his wife took her to the police station where she was, once again, admitted to the geriatric psychiatry ward.
Great Grams passed away when I was 10. Just months before her death, we took her to Hawaii with us. We had many wonderful experiences there, but also some harrowing ones. I used to joke that I got to meet many native Hawaiians on that trip. However, they were all members of the Honolulu Police Department. Apparently, that’s what happens when a woman in her 90’s runs up to a Honolulu Policeman and tells him that those people are trying to kill her. Once someone says that, the police department is forced to investigate. Luckily the manager of the resort was going through similar episodes with her own mother. The incident passed several hours later, and the next day we all spent a pleasant day at the Dole Plantation. Great Grams passed away about seven months later.
I’ll always remember how difficult it was watching Great Grams lose her memories. It’s something I don’t want anyone to go through – ever. That’s why I’m working so hard to change the face of Alzheimer’s disease.
In 2009, someone at the Build a Bear Workshop heard about PuzzlesToRemember and invited me to apply to become one of their huggable heroes. As a Huggable Hero, I was invited to St. Louis for an amazing experience. That’s where I met some very inspirational young people, many of whom have remained my friends to this day.
This trip included an amazing ceremony at the St. Louis Zoo, which was kept open in the evening for our private group. The Build a Bear Workshop gave each winner a $2500 check that could be donated to any charity of our choosing. PuzzlesToRemember was not yet a 501c3 organization, so I decided to donate my check to the Boston University Alzheimer’s Disease center. I was invited to the Alzheimer’s Disease Center, where I met some of the people that I work with to this day. It was a pivotal moment in my life.
On that first visit, I was invited to volunteer there during the following summer, when I turned 14. I was told that my work would be mostly clerical, and not glorious, but I would be around where Alzheimer’s research was really happening. I spent the summer of 2010, typing endless names into the computer and carrying boxes up flights of stairs, but it was worth every minute of that for the few awesome opportunities I had. Soon, I was invited to attend a weekly journal club about Chronic Traumatic Encephalopathy, just as it was being discovered. I learned a great deal at those meetings, and I was treated like everyone else. Everyone else consisted of medical students, post-docs, and researchers. I was even invited to the Bedford Brain Bank, where I held in my hands the brain of an athlete that had died of CTE and witnessed with my own eyes the destruction and how it was similar and also different from the destruction in Alzheimer’s disease.
The Director of Boston University Alzheimer’s Disease Center’s Clinical Core, Dr. Robert Stern, had been honest with me. My job that summer had not been glorious. I kept working in the office until the following May when I was cleared to work in the lab. I was so happy when May finally arrived and I began my work in the Molecular Psychiatry and Aging Laboratory, where I am fortunate to work under Dr. Qiu as my Principal Investigator.
My research covers various enzymes and their relationship to Amyloid Beta, a protein implicated in Alzheimer’s disease. In particular, my research examines the effects of various peripheral and central ACE inhibitors on the risk of AD, and the correlation of ACE activity in the blood serum with that in the central nervous system. I am also working with transgenic mice, testing the effects of certain hormones on the buildup of Amyloid Beta and Tau. A paper I coauthored was recently published in the Journal of Alzheimer’s Disease. Three other papers have already been submitted. For my efforts, I was offered complimentary membership in the American Association for Geriatric Psychiatry. I attended their annual conferences in 2012 and 2013, and I was able to give a poster presentation about my research at the 2013 conference.
What I have found most wonderful about working on the Boston University School of Medicine campus is the teamwork that seems ever present. No world-famous researcher seems to feel above doing data entry, or, even, moving boxes, and no lowly intern’s ideas are met with anything but interest, respect, and encouragement.
For the past 3 years, I’ve also been an editor for the AlzheimersReadingRoom.com, where I have had the opportunity to interact with caregivers around the globe. Many times these caregivers have asked me how to explain Alzheimer’s to their young children. For this reason, I undertook writing a book explaining Alzheimer’s disease to children ages 4 through 9. My hope is to explain Alzheimer’s disease on a level children can understand, while also providing them with some helpful coping skills. The book, “Why Did Grandma Put Her Underwear in the Refrigerator? An Explanation of Alzheimer’s Disease for Children” has received a wonderful reception and all outstanding reviews. I am involved in discussions about translating it into several other languages.
Recently, I have become the New England Representative of The Youth Movement, a group of young people dedicated to improving the lives of our aging citizens. The whole world's population is aging, and Alzheimer's disease is an impending disaster. More young people are becoming involved in caregiving. We need to empower youth with knowledge about the aging process so that we can make the horrible diseases of today become history.
My experiences as a caregiver to Great Grams elucidated for me a lifelong path to become a geriatric psychiatrist, tackling this disease on multiple fronts: compassionate care of those afflicted, empathetic support for weary caregivers, and research to find treatments, perhaps even a cure. Today, I am a college junior, Alzheimer's research and advocate, following my path to make a difference in the course of Alzheimer's disease.