Alzheimer's Reading Room
For the past several years I have had a friendship with a family in New York City. We have supported each other’s efforts repeatedly.
The grandma in this family is very much like my own Great Grams was, and she also has Alzheimer’s disease. Many of the incidents and drawings in my book - Why Did Grandma Put Her Underwear in the Refrigerator?: An Explanation of Alzheimer's Disease for Children - are based on Hailey, the granddaughter in this family, and her interactions with her grandmother. Below is a video of Hailey reading my book, largely her own story.
At seven years old, Hailey seems to innately understand her grandmother’s Alzheimer's disease. They have a relationship that helps keep alive my own relationship with my great grandmother.
I’d love to share some photos of Hailey and her grandmother with you. Here is a photo of Hailey, when she was only 4, doing puzzles with her grandmother:
Here is Hailey, age 5, pushing her grandmother at the NY Botanical Gardens:
Here is Hailey, age 5, doing puzzles with her grandmother:
Here is Hailey, age 5, cutting up and meat and feeding her grandmother:
Hailey, age 6, at the NY Botanical Gardens with grandma:
Here is Grandma feeding Hailey last year, when Hailey was sick. I still find it amazing how those with advanced Alzheimer’s can still sometimes get it all together in moments of emotional importance to them:
In November, grandma took a bad fall. Hailey was there to provide emotional support.
At one point, grandma was resisting showering. In Hailey’s mom’s words, “I tried to convince mom, and she started to agree, but when Hailey took over it was amazing! (The conversation was on speakerphone) Hailey: grandma, you do not want me to be sad, If you do not let Angie give you a bath I will worry about you and be very very sad! Gma: No! I do not want you to be sad. I will do it!”
The above examples are just a very few of the instances in which Hailey provides the best in care partnering. The love she shares with her grandmother is inspirational to both. I don’t think I would ever have come to know Hailey and her family if it were not for the Alzheimer’s Reading Room and PuzzlesToRemember.
By now, PuzzlesTo Remember has supplied over 41,000 puzzles around the world. This fall, I will be beginning medical school. Some people have asked me if I plan to continue PuzzlesToRemember. I do. It has given me the opportunity to know many wonderful people and also make a positive difference in many lives.
Looking into the future, though, I can see that, 3 or 4 years down the line, as a resident doing 80 – 100 hours of work in the hospital, I won’t be able to continue running PuzzlesToRemember. When that time comes, I could think of no better person to take over my nonprofit than Hailey. She is smart and caring, and I think she will make some wonderful contributions to this field. I hope she even expands PTR, perhaps by starting school clubs of students regularly going to nursing facilities to engage the patients and work on the puzzles.
Hailey has seen the sad effects of elderly people taking falls. In response, she has already come up with an invention idea that could help prevent falls for those with dementia. I know she has submitted her idea in a national competition. If she wins, and I hope she will, I will post here and share her idea with you all.
Max Wallack is 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 Boston University School of Medicine. His great grandmother, Gertrude, suffered from Alzheimer's disease. Max is the founder of PUZZLES TO REMEMBER. PTR is a project that provides puzzles to nursing homes and veterans institutions that care for Alzheimer's and dementia patients.