Finding Support by Devon White Angelini
July 14, 2015Guest Blogger: Devon White Angelini, Family Caregiver
At first, my parents were afraid to talk about my mother’s dementia or admit that she was living with Alzheimer’s disease. This was the most difficult time, because there was so much to hide and no avenue for finding support for either of them. Simply asking how things were going felt like an intrusion, as did offering support of various kinds. I still always offered to drive when I was with my mother, I went to their house to cook them dinner, and I invited them to my house as often as possible. These were my ways of supporting them frequently, without saying the reason or motivation.
After my mother’s diagnosis and the first few screenings of The Genius of Marian, our family opened ourselves up to a world of connection, compassion, and support within our friends and family. It was an incredible transformation to see how our once secretive family could begin using the internet to seek and receive much needed help. We used Google calendar, Lotsa Helping Hands, and other online tools to schedule my mother’s activities, email friends to ask for support when my father was at work, or reach out to try to schedule activities with friends on her behalf. My mother’s quality of life has been maintained thanks to the support of friends and family who had been waiting in the wings, wondering how to help, but afraid to “intrude” or “offend”. We are so grateful to them still, now that my mother’s ability to go out and live an active lifestyle has dramatically changed. These loved ones still come to visit, sit with her, listen to music together, and to try to make her laugh. We call these women, “Pam’s Posse”. They are wonderful, generous, and loving.
Most recently, I have been interested in the ways friends and family can support my family from far away. The internet is a powerful tool for connecting at a distance. Using the phone, FaceTime for video calls, emails, and even sending fun videos have become an essential part of my mother’s day. My mother’s friend, Jane, regularly sends her videos about one minute long that contain a simple, loving, friendly message that my mother loves to watch repeatedly. She responds with a huge smile and so, we often let her watch these several times in a day to help her feel the love and support from one of her best friends. Thank you to everyone who continues to be a part of our family’ life and helping us not feel isolated – you mean the world to us and are without a doubt what gives us the most support.
