Sometimes breaking your promise is the best decision for everyone.
Note: As part of Alzheimer’s Awareness Month, we are profiling three individuals that have experienced the difficult decision to move Mom or Dad into a Senior Living community that specializes in Memory Care. These are their personal stories shared with the intention of increasing awareness of cognitive disorders and learning from their own experiences. This loved one does not reside in a Spectrum Retirement Community.
How many families put off helping a parent find a new home in Memory Care because they didn’t want to break a promise?
Vernon “Vern” Gulledge didn’t know about all the options Senior Living offered. He did know he didn’t want to live anywhere but the home he knew in San Diego, California. After a debilitating stroke left him with vascular dementia, Vern’s family honored his wishes. He returned to live with his wife, Martha, at the home they shared for many years.
But after five years of stressful caregiving, Martha and her two daughters, Christi Gulledge and Kelly Focht*, had to rethink Vern’s situation, despite his strong preference for staying at home. They moved Vern to an Assisted Living and Memory Care community in San Diego. It was the best decision for everyone, but it was a long time coming.
During those five years, Gulledge and Focht followed the lead of their mom, who felt it was her duty to care for Vern at home. It’s what he wanted. And because Martha watched her mother care for her father, who developed Parkinson’s disease in his 50s, it’s what she knew.
“She saw our grandma working and trying to take care of our grandfather—this was back in the ’60s when the only other option was skilled nursing,” says Focht. “Mom felt she was supposed to do this; it was the right thing to do. Also, there was a lot of fear of nursing homes on my dad’s part. We couldn’t console him.”
Focht says his fear was so strong that in rehab, as soon as he was able to speak, he leaned into Focht’s ear and whispered, “I need you to watch everyone here and make sure I am safe.”
Gulledge and Focht were both raising families and working full time—Gulledge as a teacher, Focht as a divisional director who traveled to Senior Living communities—and stayed on call 24/7 to help with Vern’s care. If he fell in the middle of the night, one of them rushed to the hospital to support their mom.
And then Vern started having seizures. In addition, his vascular dementia affected impulse control, which left him with dramatic mood swings and aggression. Behavior changes are common as dementia progresses. A literature review published in the International Journal of Molecular Sciences found that people with vascular dementia experience higher levels of anxiety, irritability, depression, and other behavioral disturbances than people with other types of dementia.
As Martha became progressively more stressed and overwhelmed from caring for her husband, her daughters stepped in to help find a new home in Memory Care for their father. “We had hesitated because of how much Vern liked to have control over his life, but we had to take care of our mom,” says Focht. “We knew by doing what’s best for Mom we’d be doing what’s best for Dad.”
Putting the focus on their mother eased some of the guilt over moving Vern to Assisted Living. A colleague of Focht’s, who worked as a care consultant, helped the family find a community that would meet Vern’s needs.
“She got to know my dad,” Focht says. “He has a love of gardening, being outside, and good food. He is also a proud Korean War veteran. We knew, and she knew, being able to talk with other veterans would be key. She was able to look at the situation objectively and find a community he would want, not one just we would want.”
A New Home in Memory Care
The consultant found a community where Vern could begin his journey in Assisted Living and transition to Memory Care when it was time. He could also meet other veterans and spend time outdoors. The community the family chose even had an organic garden. The master gardener, Roy, chatted with the residents and let them help tend the plants. “My dad was so impressed by that,” says Focht.
Meanwhile, the community’s staff charmed the family with their customer service and positive attitude. During their tour of the community, they watched how the staff interacted with residents. Were they treating residents with respect? Was the environment warm and friendly?
To make sure the community was consistent in their engagement with residents, the family made an impromptu visit—a recommended practice for anyone touring Senior Living communities. To their relief, the staff was as warm, friendly and respectful as before. “We saw the same interactions,” Focht says. “On move day, Roy invited my dad to visit the garden. That was really important for my dad and helped make the transition go more smoothly.”
Vern also wanted to maintain communication with Martha, which he usually did while in Assisted Living with a Jitterbug big-button flip phone. When he moved to Memory Care, Vern had to give up the phone, which worried him. But the community found another way for him to call Martha twice a day—every morning and evening—and even built it into his care plan.
A Weight Lifted
Gulledge and Focht later learned their dad had a series of “silent” strokes which caused his dementia to worsen. Because they had helped him find a new home in Memory Care, the staff was able to transition Vern based on his changing care needs, although his health failed due to dementia and the strokes, he was happy in Memory Care. The fear of being “stuck in a home” had eased too.
Focht says she, her mom, and her sister breathed a collective sigh of relief with Vern safe. “Literally every sense of tension was just gone because we knew he was in the right place,” says Focht. “We could go back to being daughters and wives rather than caregivers. No more day-to-day battles, no more late-night calls. We created a great experience for him. He bonded with the staff. He felt in control.”
Advice from Someone Who’s Been There
Whether you’re the parent or the child in transition to Assisted Living or Memory Care, discuss your wishes as early as you can even though it’s difficult. Come to an agreement that allows everyone to live well. “Caregiving is a burden, but it’s a burden we accepted,” says Focht. “We wanted to protect my dad just like he did for us.”
Finally, let go of guilt. “All of us carried guilt although we knew what we wanted was best for my dad,” says Focht. “Had we not felt so much guilt, he could have been in Assisted Living much sooner. Even though it’s hard to turn over care, it’s often the best thing you can do.”
* Kelly Focht is the senior director of memory care for Spectrum Retirement Communities.