by Marian Karpisek
with Mnimaka Brockett, Mahtowin Howe,
Nere Lartitegui, Maruca Leach and Jean Stein
Our bright, creative and loving friend, Sunny, began slipping away from us several years ago. At first we weren’t aware of the reality, thinking “of course every one forgets words or thoughts from time to time.” But as the months went by and Sunny’s thought processes continued to decline, it became evident that what was occurring wasn’t a momentary glitch, but something much more serious.
The diagnosis of Early Onset Alzheimer’s did not come as a shock, but sad confirmation of our observations and fears. Now the question became, what can we do to make Sunny’s life as good as possible? Of course her family is her first line of support, but friends fill an important role that family alone cannot. Thus, the “Sunny Support Group” (SSG) was born, connecting six women who all loved Sunny, but did not necessarily know each other well.
Our goals are to ensure that Sunny continues to be surrounded by friends and to keep her connected to the outside world for as long as possible. Through these goals, we can give Sunny more moments of happiness and joy as we continue our friendship with her.
First, we needed to learn more about Sunny’s disease and what was available in the community. Jean arranged for us to accompany Sunny’s husband and son to an information meeting sponsored by the San Diego Alzheimer’s Association. This helped us better understand the disease and how it would progress in the years ahead. Jean found Alzheimer’s literature that expanded our knowledge and we read related books like Still Alice by Lisa Genova and Jan’s Story by Barry Petersen.
We knew that to stay connected to Sunny we would need consistent contact with her. We decided that, each week, one of us would plan a one-on-one activity with Sunny. This means that each member of the SSG arranges an outing with Sunny once every six weeks.
By observing Sunny’s behavior and reactions on our outings, we discovered that some activities did not work out as planned, while others are enjoyable for both Sunny and the SSG member. It made sense to continue activities that Sunny enjoyed before her disease became evident. For instance, Maruca often takes Sunny to the Meditation Gardens in Encinitas, a refuge the two of them have frequented over the years. With Maruca, Sunny is able to become centered and meditate peacefully.
Sometimes finding topics of conversation is difficult because Sunny has limited recall of recent events. Nere puts together Sunny’s love of singing and movies and rents musicals like South Pacific or Gigi. The two of them watch and sing along, exercising the brain at the same time they are enjoying the film. Lyrics flow easily from Sunny as music uses a different pathway in the brain than verbal communication.
Places in nature provide a common ground for conversation and are visually stimulating. Jean and Mahtowin both take Sunny to her favorite bench at Sunset Cliffs to watch and discuss the surfers, pelicans, and other beach goers. On a sunny day, Mnimaka and Sunny may enjoy lunch at The Prado, surrounded by the greenery of beautiful Balboa Park.
Sharing nail or hair care appointments is a mood lifter and provides needed personal care. Sunny and Marian relax as they’re pampered with manicures and pedicures and conversation focuses on nail colors and how beautiful they’ll look afterward when they go to lunch.
Careful pre-planning for each outing is essential. We coordinate with Wally, Sunny’s husband, so he can prepare her for the activity. He posts a large note on her mirror to remind her of who she will be seeing that day. The SSG member calls the night before the outing as a reminder and again just before leaving to pick up Sunny so she remembers to get dressed and ready. Afterward, each woman e-mails a report of her outing to the rest of us so we have a pulse on Sunny’s current state.
In the beginning, the SSG occasionally had lunch with Sunny as a group at O’Bistro, her favorite neighborhood restaurant. After about a year, we realized Sunny was finding it stressful to visit a restaurant with a group. The noise, conversation and overall activity level over-stimulated and confused her.
Recently, we decided to hold another SSG lunch for Sunny, but to have it at Nere’s home. The menu featured French food to remind Sunny of the wonderful years when she lived in Paris and attended the Sorbonne. However, before the lunch happened, we designed a structure that would permit Sunny to relax and enjoy herself, avoiding confusion.
Marian and Sunny were the first to arrive. Then, each of the other SSG women entered the home one at a time to give Sunny time to focus on the new arrival and not feel overwhelmed. Everyone kept their greeting loving, but low-key.We tried to limit the conversation to one person talking at a time. When all of the women were present, we held hands and had a centering moment, acknowledging our friendship created by our love of Sunny.
Including Sunny in the conversation by looking at her, as well as at the others, and giving her time to reply and interact as she wanted was key. Each of us took a turn sitting next to Sunny so she felt connected and included on a one-on-one basis. In leaving, each woman said good-bye to Sunny individually.
The lunch was a tremendous success. Sunny felt surrounded by loving friends and she thoroughly enjoyed herself. For the first time in months, she initiated a phone call three days later to thank Nere for the wonderful day.
Not every outing is successful every time. Occasionally, Sunny will not feel up to participating and will cancel at the last minute or she’ll be having a bad day and will be less mentally or emotionally present than usual. Other days we see glimpses of the old Sunny that we knew as she is more present and aware. This is to be expected as dementia does not proceed in a straight line. We are learning to go with the flow.
However, we know that as Sunny’s disease progresses, we will need to adapt our interactions to her changing needs and abilities. What succeeds now may fail in the future. We are prepared for this and, although we hope more serious decline will be a long time in coming, we know that Early Onset Alzheimer’s can cruelly rob its victims of memory in a fairly short period of time.
When the day eventually arrives and Sunny can no longer recognize us, we plan to continue our connection with her. At that point, we may only be able to sit quietly and hold her hand, but on some level we know that she will know that we are always there for her.
The SSG is committed to being a part of Sunny’s life forever. We are six women, enriched by Sunny, as much as Sunny is enriched by us. We also draw strength from our interactions with each other as we learn and share this journey together.
The SSG has created a structure for our continuing friendship with Sunny that can help others create a similar support network for friends suffering from Alzheimer’s. We hope the path we have chosen will help guide and empower others as together we create a wider climate of caring
Editors Note: Sunny and friends were featured in the New York Times New Old Age Blog on January 28th.
Photo of Sunny by Marian Karpisek