When her husband John started showing short term memory difficulty, Barbara was only just beginning to realize she was at the start of a long, challenging journey.
Family members started noticing that John was showing more forgetfulness than usual and Barbara convinced him to go to the Veterans Affairs hospital. After testing, the diagnosis was Frontal Lobe Dementia.
19 years later, John is 92 years old. Barbara says he has short term memory issues, episodes where he doesn’t know what time it is and lately has developed some trouble speaking. On the positive side, John is able to be home by himself for short periods of time in the Hopkins apartment they share and he remembers events and his long-term memory is often remarkable.
Barbara wasn’t sure what Frontal Lobe Dementia was all about so she started doing some research. It was then that she happened to connect with Volunteers of America MN/WI’s Culturally Responsive Caregiver Support and Dementia Services. VOA’s Tuesday Glover was part of a team that visited Barbara’s church as part of a health fair and Barbara still believes they were heaven-sent.
“I didn't know there was so many different types of dementia until I got involved with VOA,” she said.
Barbara learned that she would need help to be the caregiver she wanted to be for John. Everyone going through these challenges does.
Tuesday and her team connected Barbara with resources that helped her learn. They were there to talk with Barbara when caregiving got difficult and they introduced her to others who were going through similar challenges.
She called caregiving a life of never-ending worry.
“When you go to bed at night, you're not really sleeping,” Barbara said. “That's a challenge. You're always listening.”
Barbara recalled one time she heard pots and pans clanking around in the kitchen and got up to see John preparing to cook supper. It was past midnight.
Early morning is Barbara’s quiet time, but when John gets up she is on the job, making sure he takes medications and has proper nutrition. Emotional outbursts are common with Frontal Lobe Dementia.
“I try to be careful, but it seems I'm always making mistakes,” Barbara said, reflecting on how their relationship has changed over time.
Barbara says Tuesday and her team are always there for her though, asking how they can help support her, assisting with transportation challenges, even helping watch over John when Barbara needs to be away. Tuesday and her team have coached Barbara about better ways to communicate with John.
“They're my right hand. They're right there. And whatever I need, I feel like I can call upon them and they're going to be there for me.
Barbara said she and Tuesday have a “special relationship,” connecting over coffee, with Tuesday offering advice without judgement or the commandments about what she’s “got to do.”
“I have somebody outside of my family that I can really talk to that understands what I might be going through… They have compassion, and they’re there. They’re there for you every step of the way. “
She said that without Tuesday she likely would have needed to place her husband in a nursing home.
