Coping with being separated from a loved one in a care facility
Gene Lucas hasn’t seen his wife of over 40 years for almost eight months.
Mr. Lucas was previously UCSB’s executive vice chancellor for nearly four decades, and his wife, Susan (Sue) Lucas, is currently living with dementia in Villa Alamar of Santa Barbara.
The Goleta resident used to visit his wife around three times a week, but because of COVID-19 restrictions on visiting the immunocompromised, he has only been able to Zoom call Sue once a week, and there’s no telling when he will be able to see his wife next.
The two have known each other since junior high school in Downey, where they both grew up, and started “going steady” in the tenth grade.
The rest was history for the high school sweethearts.
Mr. Lucas got his nuclear engineering degree at UCSB, and Sue went to Cerritos Junior College where she got her AA in English, with a Spanish minor. She moved up to Santa Barbara and got her BA in English at UCSB, where the two got married in between their junior and senior years and moved into married-student housing on El Colegio Road.
Mr. Lucas went to graduate school at MIT in Boston, where the couple lived and had their first child. After that, he was offered a job at UCSB and climbed the ranks from assistant professor to associate professor to executive vice chancellor, and retired at the end of 2013.
Three children and many happy years of marriage and traveling later, the couple’s lives changed forever during Mr. Lucas’s second year of retirement.
On a golfing trip to Monterey, Sue experienced a bad fall down the stairs and Mr. Lucas found her unconscious. He called 911 and she was rushed to a trauma center, where he said “they saved her life that night.”
Sue suffered a subdural hematoma, a pool of blood between her brain and its outermost covering, and an orbital fracture around her left eye.
Mr. Lucas’s high school sweetheart was in a coma for a week, moved to ICU for another week and transferred to Cottage Rehabilitation Hospital for another six weeks, “learning how to walk and talk and eat and breathe all over again.”
“She was discharged here at home, and I was her therapist,” Mr. Lucas told the News-Press. “I was her OT, her PT and her ST.”
While therapists visited on a weekly basis for a couple hours during the day, Mr. Lucas was his wife’s main caretaker, and the separation of the two when he needed to leave their home became worse and worse.
“I was totally unequipped to deal with somebody with dementia, let alone somebody who was doing brain recovery. That was on-the-job training,” Mr. Lucas said. “She made a big deal about me leaving and it was very hard on the careperson when I was gone.”
He was then told he ought to look into placing her in a memory care facility, and decided on Villa Alamar.
Sue was diagnosed with dementia in November of the year she fell, and brain scans showed her brain had atrophied after she was transferred to Villa Alamar. She suffers from the process of recovering from her traumatic brain injury and her dementia overlapping.
Sue has been at Villa Alamar for around three and a half years now. While Mr. Lucas calls her over Zoom once a week, he said maybe one out of four times she’ll actually be awake. At this stage of the game, he said, she sleeps most of the time.
“She still recognizes me. She doesn’t say much — I do all the talking,” Mr. Lucas continued. “I still show her pictures over Zoom, family photos I’ve digitized. I can usually get a smile out of her. I tell her I love her and she’ll say it back to me.”
However, Mr. Lucas said right now, Sue is eating less and less, and “that’s often the end of the road as they stop eating, and that would be a blessing for her.”
“What does she have to look forward to? Laying in bed every day until she passes away, which is not great. I’ve kind of made my peace that she’s gone,” he said. “Back when I was taking care of her with dementia, it was pretty clear I’d lost my wife at that time and she wasn’t going to recover.”
Mr. Lucas joined an Alzheimer’s support group about a year before he placed Sue in the memory care facility, something he said really taught him how to care for somebody, learning from those who had been doing it for years.
For Mr. Lucas, the support group was a “life saver.”
“It’s a long, slow grief process with someone with dementia,” he said. “My advice to people who have just discovered their loved one is in early stages of dementia is to get connected with the Alzheimer’s Association and get educated.”
Mr. Lucas cited resources such as classes, online presentations and books about caring for individuals with Alzheimer’s.
“The second recommendation is don’t read too far ahead,” he added. “Read the parts that are relevant to you today. If you read too far ahead, you get depressed and un-useful information. It’s useful later on, but not at the stage you’re in.”
As far as coping with separation amid COVID-19, Mr. Lucas said to stay in touch with friends and family.
“For people that are going through hard times, the more they can contact friends and family, even by phone, email or texting and staying in contact with people — I think that’s the best medicine at this point,” he said. “It’s too easy to become a hermit.”
As he copes, Mr. Lucas now focuses on providing advice to support-group members who are just beginning their caretaking journey; raising money and awareness for the Alzheimer’s Association; and simply reflecting on the fond memories he and Sue had together.
From camping trips to hiking 60 miles through Italy to going on a safari in Africa where he said he remembers vividly he and Sue standing with their heads out of the top of their vehicle just watching 30 giraffes roll by and eat in the treetops, Mr. Lucas has plenty to reminisce about his “lovely, social” travel companion and life companion.
Lindsey Leonard is the executive director of the Alzheimer’s Association California Central Coast Chapter, which is projected to serve about 3,000 families.
“Our mission to support those affected by Alzheimer’s and other dementia has always been important, but it has become even more critical during these times of COVID-19,” she told the News-Press. “We’ve additionally witnessed the increased difficulties of caregivers being isolated at home — or even more heartbreaking — separated from their loved ones that live in care facilities. We are committed to providing continued support through virtual platforms and encouraging people to get involved in our upcoming Walk to End Alzheimer’s, which allows us to continue offering cost-free programs and advance critical research toward methods of treatment and prevention.”
Mr. Lucas has a team in the Walk to End Alzheimer’s. His team’s goal is $10,000, and his personal goal is $6,000.
To donate or learn more about his cause, visit https://act.alz.org/site/TR;jsessionid=00000000.app20018b?px=15258333&fr_id=13278&pg=personal&NONCE_TOKEN=9A4E608AA7A3BA22D3F4382A49F92E5F.
To learn more information about the Alzheimer’s Association and its support groups and other resources, visit https://www.alz.org/.