Written by Laura Smetana
A few years after my son was born, my dad was diagnosed with Alzheimer’s disease and vascular dementia. It was a big change for our family, as we shifted to being his primary caregiver. Before my dad was diagnosed, he was a very active grandparent—he loved playing with my son at the park, going on walks, helping us garden, and inviting us over for weekly barbecues and ice cream. But as his health declined, he was no longer able to do many of the activities he loved. He moved from his home to an assisted living facility, then memory care, and eventually was enrolled in hospice care.
Understanding Alzheimer’s disease and other dementias is hard for adults, but it’s especially challenging for children, who see the changes but don’t fully understand why the changes are happening. We realized we had to be honest with our son and explained that his grandpa had a disease that was changing the way his brain worked, that it wasn’t his fault, and that the disease wasn’t contagious. Seeing a loved one decline physically and mentally is hard, and it was important for us to have ongoing discussions about the changes we were seeing, to validate our son’s feelings, and to acknowledge that we felt sad about it too. It was also important for my son to maintain a relationship with his grandpa and to feel like he was doing his part to help—whether it was assisting with his grocery shopping, picking out the flavor of his protein shakes for the week, getting the ice cream when we visited, or drawing pictures to decorate Grandpa’s walls.
Despite my dad’s diagnosis, they were able to maintain a meaningful connection through a shared love of ice cream. My dad gave my son his first taste of ice cream when he was a baby and from that moment on, they always enjoyed having ice cream together. After he moved to assisted living, their favorite activity became visiting the ice cream parlor every weekend. When we got my dad’s groceries, my son proudly delivered tubs of vanilla ice cream to stock his freezer, and in memory care they enjoyed ice cream together at the family nights. A few days before my dad died, he asked my son if there was any ice cream. My son asked the nurse, and she gave him two cups of chocolate ice cream–one for each of them. It was their last interaction together and it was a beautiful full circle moment.
Their relationship became the inspiration for my book, Ice Cream with Grandpa: A Loving Story for Kids About Alzheimer’s & Dementia, which is told from a child’s point of view and beautifully illustrated by Elisabete B. P. de Moraes. It chronicles the loving relationship between a grandson and his grandpa, before and after his grandpa is diagnosed with dementia. It also includes a guide with tips for talking to kids about dementia, hospice, death, and grief by expert on grief and loss, Diane Snyder Cowan, MA, MT-BC, CHPCA. Having these conversations with children can be challenging, and the guide is a great resource to help parents and caregivers get started. It is the book I wish I had at the time, and I hope it helps other children and families navigate their own journeys through dementia and loss.
After my dad was diagnosed with early stages of dementia, we felt overwhelmed and didn’t know where to turn for help. Where would he go? What long-term care options were there in the area? What resources were there to help? How quickly would the disease progress? How would we explain it to our child? There was so much unknown, and we needed help navigating the road ahead. Not only were we learning about how the disease would affect our dad and our relationship, but we needed to figure out practical things like where he would live, legal matters and finances, and how to access quality care.
My colleague told me about the Alzheimer’s Association 24/7 Helpline (800.272.3900) and I remember spending my lunch break at work on the phone with a helpful staff member who answered all of my questions, and followed up with an email with a link to the Community Resource Finder, information to assist in making long-term care decisions, and a residential care checklist that we were able to print and bring with us when touring different facilities. These resources were invaluable as we navigated my dad’s changing living situation.
Throughout this journey, we turned to the resources for caregivers on the Alzheimer’s Association website to learn about what to expect as he progressed through the different stages of the disease, and how to make sure he got the support and care he needed. Navigating the challenges that come with caregiving for a loved one with Alzheimer’s disease and other dementias can be overwhelming, but knowing that the resources on the Alzheimer’s Association website were just a click away, and that the Helpline was just a call away, was a huge relief. I knew I wasn’t alone on this journey and that support and reliable information would be there when I needed it.
Raising funds and awareness about Alzheimer’s disease and other dementias is so important. There is still a stigma and shame about the disease that can make people feel uncomfortable about sharing their diagnosis and it can be difficult for friends and family to maintain a relationship with loved ones as they progress through the disease. The changes can be physical, emotional, and behavioral—and it can be very hard to witness a loved one who no longer seems like the person you used to know. There were days my dad didn’t believe we were his family. Sometimes he would say “That’s not you!” That was hard for us, and I can only imagine how he must have felt, but we tried to meet him where he was in his reality and eventually, we would gently move on to other topics of conversation. Every day was different, some were more challenging than others, but we continued to adapt and share many wonderful moments together. The more people know about the disease, the more understanding, support, and compassion there will be for people living Alzheimer’s and other dementias—and hopefully with more fundraising and awareness, we’ll advance further towards finding additional treatments and eventually, a cure.
I want people to know that no matter how much our loved ones change as they progress through Alzheimer’s disease or other dementias, they are still our loved ones. We can still enjoy spending time with each other, and they can still feel the love and kindness we show up with. The things we enjoyed doing together with my dad changed, but some things remained the same, like our shared love of ice cream. Every week brought new challenges, but there were joys too and those were important to celebrate and cherish.
Some days my dad was very chatty. One day when my dad was in memory care, we suggested my son tell Grandpa some of the jokes he learned in his new joke book. My son succeeded in making my dad laugh, and it was the first time he had laughed in months. That was a moment to celebrate. Then my dad started telling my son some of his favorite jokes, and soon we were all laughing together. That was such a wonderful, joyous moment of connection—and it became the inspiration for one of the scenes in Ice Cream with Grandpa.
Other days my dad didn’t want to talk, but he didn’t want us to leave either. One day my dad and I sat together in silence for an hour, exchanging glances and having a conversation with our eyes. An hour is a long time when it’s our instinct to fill the silence, but it was one of the most beautiful moments that I shared with my dad. In my head I was having a conversation with him, and it felt like he was conversing with me through his eyes too. It was a beautiful moment, one that wouldn’t have happened if I had just said, “Well he doesn’t want to talk, I guess I’ll just leave.” He wanted to talk with his eyes, so that’s what we did. I met him where he was, in his reality at that moment, and I’m so grateful I did.