Revisiting the Memory Bus with Rose M. Grant

by Amy L. Silva Rigtrup

Just over a year ago, Rose M. Grant was a guest on The Silva Lining, having recently published her book, "I Left My Memory On A Bus Somewhere: A Bittersweet Journey Through Alzheimer's Disease". Within her book, written mainly to honor her husband's memory while also providing support and education for other caregivers and families as well as raise awareness about the disease, she mentions that writing this book was her way of putting her "grief into action". She was my inspiration to seek out and interview people that put their "grief into action" in different ways - and that's only an ounce of where her inspiration reaches!

This week Rose came back on the show to fill me in on her year and continue the conversation about this disease that has no cure, leaves no survivors, demands our attention and requires our action. She has had quite the busy year. Her book is in its second printing with a digital version in the works; she's attended 25 readings/signings; lectured at UMass Dartmouth to Nursing Students in Gerontology Rotation; Key Note Speaker at Rhode Island's Alzheimer's Association's Walk Kick-Off; remains very active with local support systems for caregivers; devotes time, effort and creativity into numerous fundraising endeavors; and most importantly, has watched her beloved family grow, expand and thrive.

Click HERE to listen to the podcast dated 3/3/2016 and CLICK HERE for Rose's first interview

Our conversation touched upon the importance of highlighting nursing homes for their quality of care, especially in meeting the needs of those in various stages of Alzheimer's disease. They are also a huge asset of positive opportunity for the family members. Yes, in a perfect world, we would all be able to keep our loved ones home to die peaceful deaths but for some families and certain situations - this simply is not an option. The loved one's condition of health is a factor that requires specific needs and like Rose said on the show, with Alzheimer's Disease, keeping your loved one home, "takes a village". From the physical needs as the stages of the disease progress, to the emotional toll taken on the caregiver, including factors of safety for unexpected or provoked behavioral aggressiveness to the abilities to escape or find ways to harm themselves - nursing homes are just better equipped to handle all of these realities that can be overwhelmingly stressful for families. The beauty is, that once these factors are removed as issues to worry about, families are free to enjoy spending time with their loved ones.

How to make the most of that time was another topic Rose and I discussed. As adults, we rely on conversation to mainly connect with people. For some phases of Alzheimer's, great conversations can be had, but sometimes, conversation simply is not possible. When that happens, It's important to remember other ways to engage and connect, like using touch, music, photographs and remembering that they can most likely still hear you - so keep talking to them. Continue efforts with engagement, because you never know when you'll spark a precious "window of lucidity". Here is the Huffington Post piece about the app I mentioned on the show that you can customize with memories, captions, photos and music to enhance engagement called GreyMatters. I urge you to watch the video about the creator who made this app for her grandmother. It took my breath away.

Children. The stages of Alzheimer's are devastating for so many reasons and on so many levels. For adults, part of the struggle is adapting to the changing personality/cognition/engagement with family members they looked up to. The challenge is to adapt and meet the person at the level they happen to be at in that moment at that stage in the disease. For adults, this is complex. For children - this is simple. Children are professionals at engaging with people, regardless of what "stage" they are in. They engage, they bond, they have an uncanny ability to bring out happiness, joy and unexpected reactions. There is a preschool in Seattle, WA that is located within a senior care center with integrated activities throughout the week that join the children and elderly together - and it's amazing. Click here to check out the documentary about the school's Intergenerational Learning Center, "Present Perfect", coming out soon.

In a nutshell, Rose is amazing and I hope my listeners want to keep hearing from her as much as I do. I wish her all of the best on her continued journey of speaking, sharing, helping, inspiring and educating.

Love for her beloved Jack mixed with the motivation to take action got her to put pen to paper and share her story. Her background as an educator of Science led her to devote proceeds from her book sales to Cure Alzheimer's Fund. What they are doing in groundbreaking. Not only should you know about it, but you should share it, support it and follow its progress. Can you imagine a world where scientific medical research was followed with the same attention and flair that celebrity marriages and championship sports were?

This fund is science - a Research Consortium made up of an all-star team of scientists working at premier research institutions across the country. 100% percent goes to research. The founders and board cover ALL operating expenses. They were responsible for the groundbreaking "Alzheimer's in a Dish Study" which promises to greatly accelerate drug testing and was reported by The New York Times as a "giant step forward." 

Please visit the Cure Alzheimer's Fund website for more information or to make a donation.

So, you're wondering how to get a copy of Rose's book? I'd love to help her get to that third printing by the end of the year! Here's how:

For caregivers or family members seeking support, The Alzheimer's Association is a great place to start and has many local partnerships on their site that you can reach out to in your area. There are two events coming up locally about Effective Communication Strategies:

  • In March @ Buttonwood Senior Center, New Bedford
  • In April @ Bristol Elder Services, Fall River

Rose serves on the Southeastern Massachusetts Partnership Caregiver Panels with the Alzheimer's Association and has Panels coming up at The Olde White Church in Swansea and St. Joseph Church in Fairhaven. Email semapartnership@gmail.com

Other great resources for caregivers are Local Council on Aging and Bristol Elder Services. Just know that you are not alone. support is available and it's the best type of support - from people that have been where you are and know the path that you are on.

The Silva Lining would like to thank our wonderful sponsor,

St. Anthony of Padua Credit Union - We are proud to be sponsored by such an incredible bank, that in an age of conglomerate banks treating people like numbers, maintains a relationship with its members based on trust, friendly service and loyalty. With competitive rates for savings accounts and various loans, St. Anthony of Padua can handle all of your financial needs. Convenient online banking and more information at www.stanthonyofpaduafcu.com