Why Raise Awareness
Maribeth Talbot, 22 years old, has struggled with cashiers or insurance representatives multiple times throughout her unique situation, as a daughter and caregiver to her mother, Pam Talbot. Buying groceries at the store with her mother, a cashier suggested Pam’s signature was done by a child. “He didn’t realize my mother could understand him and that he was making fun of her,” Maribeth explained. Pam has aphasia and experiences the lack of public awareness of aphasia constantly. Unpleasant encounters like this are the reason we need to help raise awareness of aphasia, not only for current clients, but family members, friends, and those who will experience aphasia in the future.
Not All Aphasia Comes from Strokes
Maribeth’s mother, Pam, has had Multiple Sclerosis (MS) for 17 years and after a life threatening brain infection caused by trial MS medication in January 2013, Pam was diagnosed with aphasia. While stroke is a common cause for aphasia, it is not the only cause and it is important to remember that not every person with aphasia has had a stroke.
Success in UMAP’s Social Community
Pam Talbot recently finished a session at UMAP with Maribeth attending as her caregiver. Before coming to UMAP, in their hometown of Blair, Neb., Pam had gone into isolation, only seeing her family and therapists. UMAP helped Pam because it immersed her into social settings every day. The Social Recreational Activities, a component of the intensive therapy unique to UMAP, created comfortable settings for clients to socialize in the community. Maribeth thought the Wednesday night Dinner Club was especially great because the clients ordered from patient and engaging wait staff, which made Pam and the other clients feel accepted. “Seeing people enjoy her company helped her emotionally, which helped her a lot with her aphasia,” Maribeth said, noticing a connection between her mother’s high spirits and her progress in therapy.
“This isn’t like a hospital. I loved that. It’s home-like,” Maribeth said. “UMAP is structured to create a social and close community for each session by having everyone eat meals together and participate in group therapy. Everyone is willing to drop everything and help.”
Maribeth commented that “Lisa Kraus, coordinator of UMAP’s Social Recreational Activities, will sit down and talk and listen to you whenever.”
“Talking with the clients and families is a wonderful part of my job,” Lisa said. “We are all a part of the ever-growing UMAP family.”
At the end of the session, Maribeth felt her family knew what aspects to look for when they search for good therapy at home in Nebraska.
When coming to Ann Arbor, the Talbots had no idea what the city would be like. But, Maribeth really liked the size and culture of Ann Arbor because it is a college town and the program is part of the school campus. She especially loved that Ann Arbor could be upbeat and busy if she wanted something to do, but also slowed down and calm for her mother.
Why They Came to UMAP
After Pam’s release from the hospital, Maribeth and her family weren’t sure what they could do to help their mother. The Talbot’s reached out to the family of Maribeth’s middle school classmate, Josh Hodgson, who had a stroke at age 13. Josh has been attending UMAP every fall for the past four years with great experiences, and Mrs. Hodgson suggested the Talbots consider the program for Pam. With a positive recommendation from a returning client and family friend, Maribeth began to research the program. Not only was UMAP recommended to the Talbots, but it was the closest and only program of its type that insurance would help pay for. Maribeth, who had withdrawn from college at University of Nebraska Omaha when her mother entered the hospital, decided she would not go back to school until she accompanied her mother to a UMAP session as her caregiver.
Caregiving at 22
As a caregiver, Maribeth gained added insight about aphasia in seminars and participated in a support group with fellow caregivers as part of the Caregiver Curriculum. Before coming to UMAP, Maribeth felt she and her family did not have a full understanding of aphasia and how to cope with it. But, as a result of the Caregiver Education Seminars, Maribeth felt much more prepared to continue helping her mom after the program.
As a 22 year old and the daughter of a UMAP client, Maribeth fulfills a not-so-ordinary roll for her mother. “Caregiving is odd…” Maribeth confessed, “Sometimes I don’t know what to do. I feel like I’m messing it up, like someone older or more mature could do it better.” Maribeth felt that the Caregiver Support Group was a safe and helpful place to come to with her struggles.
“The Caregiver Curriculum offers education and emotional support through the weekly educational seminars and support group to all caregivers,” said Mimi Block, UMAP clinical services manager. “It is exciting to see how each caregiver grows emotionally and adjusts to their new roles in life and become better communicators.”
Although Maribeth was the youngest caregiver in her session, many children of clients enrolled in UMAP visited frequently. “Everyone is just trying to participate any way they can for a family member in these situations. We’ve all had to make sacrifices and this is the one I got to make. And I wanted to. I learned how to be the best daughter for my mother,” Maribeth stated, “I wouldn’t have it any other way.”
At the beginning of the session, Pam could not say words such as yes and whispered when she did. Now, Pam has made strides in her communication and can speak in full sentences. “If we didn’t come here, she’d still be whispering and have difficulty with speaking more than two words.” Maribeth reflected. The Talbots have headed back to Nebraska and Pam will continue twice-weekly speech therapy at The University of Nebraska Omaha.
Tips for communicating with a person who has aphasia
- Give plenty of time
- Be open to drawing or gesturing
- Talk in a relaxed, natural way
- Use straightforward language
- Confirm that you are communicating successfully
- The intelligence of people with aphasia is intact