Author: Mary Ellen Mullholand, President – Eperture
Over the years of working at a nursing care facility, I often heard this question from distraught family members. They spoke in quiet voices and told the story of mom who became like a ghost of the person that had cared for them their whole life and then there was this new person that looked different, acted different and just was not “their” mom.
Dementia and its symptoms often are hidden or ignored by family. This reaction inhibits families from reaching out for advice and support and often leaves the nominated caregiver with feelings of guilt and placing blame on those with dementia like it was their fault. I often heard families cry with the summary statement: “then there is the feeling of relief when the senior is placed in care”. There is no graceful way through it as it is a very complicated illness and the fallout to the entire family network is earth-shattering!
As the company that developed RememberStuff™, we are hoping that those experiencing dementia and those who are facing the elder years with no signs of dementia but thinking about what they can do to slow or stop memory loss, take the opportunity to use this software to record their wishes about their care should they find that one day you cannot take care of yourself. RememberStuff can hold many a set of daily activities that you enjoy and help you recall how to participate or lists of directions for family if your memory is no longer strong. Think of RememberStuff as the device to help you stay engaged and to help those who will need to make the weighty decisions for your care.
Finally, families should embrace the person who is in their care as they are and to do so in the moment not the memory of the past. You will find joy and a treasure chest of in-the-moment experiences. Soon you will erase the ghost of who your loved one was and ask, “who are you now?” Review our website and learn more about RememberStuff™ (rememberstuff.com) and learn to navigate through the changes caused by dementia.
Their reactions were adorable. We look forward to enjoying video clips and creating education quizzes that they will enjoy for many years. After that, their parents probably will continue with the system in order to keep track of crazy schedules and capturing memories.
What my colleagues and I created was a super secure, dedicated system to help my mom, and individuals in her situation, do things on their own—we wanted to support their dignity and their drive to stay autonomous. We also wanted to help the entire family support my mom and handle the many challenges facing all of us on this journey. The first prototype was a large touchscreen computer that my mom “could help us test.” She absolutely rose to the occasion. Our goal was to have the system function more as a kiosk than a computer and have it be so simple to use that it required no training. We originally named the product “The Daily Do” because it had a highly informative calendar that would have pop-up reminders and helpful information such as how to find the doctor’s office with pictures of the office and any helpful landmarks. But it was more than a calendar – it captured memories through easy-to-create video clips that we would send back and forth to each. My mom loved the system, and it probably allowed her to stay in her house several years longer than she would have without it.