By Max Wallack
Alzheimer's Reading Room
|Max and Great Grams|
At the age of nine, with sleepy eyes, I took 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.
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When I was a young child, my great grandmother had been my best friend. Almost ninety years my senior, Great Grams 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.
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.
No one, neither a friend nor a teacher, was forthcoming with advice to a very young caregiver, so I was largely left to develop my own ideas at an early age.
I learned this early in life when, as a pre-kindergarten student who could already read, I was sorely disappointed that many other students barely spoke; I could hardly hold a conversation with them about the difficulties I was experiencing in my relations with Great Grams.
Once, when the teacher went out of the room, I noticed some student records that had been left open on the teacher’s desk, and I read some of them out loud to the class because they were undoubtedly the most interesting reading material in the room. Because I was only three, nobody had thought it necessary to explain to me the meaning of student-teacher confidentiality, and the teachers were not amused.
Each afternoon, I returned home prepared for homework more difficult than that which any child should face. The last thing in the world I wanted was to have my best friend have to be placed in a nursing home; we had promised that would never happen.
It wasn’t Great Grams’ 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 is the few dollars in your purse, and Great Grams held on to that purse day and night.
Wanting to make my childhood as “normal” as possible, under the circumstances, my parents continued to plan family trips, which included Great Grams. I had some really unusual experiences, travelling with Great Grams.
On our trip to Hawaii, I got to meet many, many native Hawaiians. It seems that when one is staying at a resort in Hawaii, and one gets up from a wheelchair, runs to a police officer and tells him “those people are trying to kill me”, the whole family gets to meet most of the Honolulu police force!
In another episode, Great Grams, who had never exhibited any prejudice in her life, refused to get on a plane because “black people were getting on”, and, once on, she refused to have the door closed to the restroom because she thought she was getting locked in.
During the last year of Great Grams’ life, she 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, 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 postpone some of the symptoms.
After Great Grams passed away in 2007, I decided to collect jigsaw puzzles and distribute them to the facilities that had helped care for Great Grams. 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.
As it turned out, things were going so well that I decided to form a 501c3 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.
PuzzlesToRemember became a 501c3 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, and they do not enjoy puzzles about Sponge Bob and Dora. Many puzzles had too many pieces or pieces to 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 17,000 puzzles to Alzheimer’s facilities around the world.
From my own experiences, I know that, in the case of Alzheimer’s disease, it is not only the patient that is suffering; it is the whole family. The behavioral issues associated with this illness are not often focused upon, but they can be devastating.
Caregiving can be so stressful that about half of all Alzheimer’s caregivers pass away before their patient! For this reason, I have made the choice to become a Geriatric Psychiatrist, working with both dementia patients and their family members. In 2010, I became an editor for the Alzheimer’s Reading Room, providing information and online support for Alzheimer’s caregivers.
It is clear to me that I need to pursue a very vigorous academic schedule in order to pursue the legacy left to me by Great Grams.
Great Grams had a very high regard for education, and I share that sentiment. Today, at age 16, I am a college sophomore, majoring in Neuroscience. Simultaneously, I volunteer as a Research Intern, three to five days a week, at Boston University’s Molecular Psychiatry and Aging Laboratory, where I research various enzymes and their relationship to Amyloid Beta, a protein implicated in Alzheimer’s disease. For my work on behalf of Alzheimer’s patients, I was awarded, at age 15, complimentary membership in the American Association for Geriatric Psychiatry.
In this country, and in many places around the world, our population is aging, and Alzheimer’s disease is an impending disaster. My experiences as a caregiver to Great Grams have, for me, elucidated my lifelong path to tackle this disease on multiple fronts, encompassing compassionate care of those afflicted, support for weary caregivers, and research to find treatments and, perhaps, a cure.
This is my calling in life.
PUZZLES TO REMEMBER. PTR is a project that provides puzzles to nursing homes and veterans institutions that care for Alzheimer's and dementia patients. Puzzles To Remember has already distributed 12,646 puzzles to over 1298 Alzheimer’s caregiving facilities in all 50 states, plus Canada, Mexico, England, and Colombia.
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Original content Max Wallack, the Alzheimer's Reading Room