A valentine of gratitude: Love continues to grow after Alzheimer's diagnosis for Austin couple
This Valentine's Day, Joe and Ellen Bell will celebrate with close friends. Joe, 76, has some things planned for Ellen, 75, but he doesn't want to say what.
"It's worked out so far," Joe said of their marriage. "I try to keep on keeping on, staying together and working together, being friends."
"And addressing the things that are in front of you," Ellen said.
That thing in front of them is Alzheimer's disease. Joe was diagnosed first with mild cognitive impairment in 2013 and then with Alzheimer's in 2016.
The degenerative brain disease has been the biggest challenge of their marriage.
Cool kid and protected child
Ellen Victory met Joe Bell in 1961 as freshmen at Broadmoor High School in Shreveport, La.
"Joe was much cooler than me," she said, noting that he would wear tennis shoes all the time. "I was this protected child not allowed to do too much."
"I thought she was nice," he said. "We were friends."
She invited him to her church hayride. He reciprocated and invited her to his church hayride.
"And that was that," she said.
They graduated from high school. He wore tennis shoes under his robe, which just wasn't done. "I'm an outlier," he said.
She followed the rules.
He went to Baylor University and studied biology, especially reptiles. She went to Centenary College of Louisiana in Shreveport to become a teacher.
Then in 1968, she was at a Woolco store in Shreveport buying a fan for her mother. He was shopping with his older brother Mike.
Ellen Victor and Joe Bell ran into each other. They dated for six weeks and knew they were the ones.
Seeing the world
But the marriage would have to wait. Joe had signed a two-year contract to go to Libya and Italy to work for an oil company.
They wrote letters to each other during those two years and then reconnected by taking a train trip on the Orient Express through Europe all the way to Turkey. They bought tea from vendors at the train stations. They ate cherries on the steps of the Acropolis in Greece and were asked to leave for eating cherries on the steps of the Acropolis.
It might have been scandalous, not married yet and all, but "it was fun, too," Joe said.
He sent a letter to her parents from their trip on airmail stationery: "Ellen and I have decided to be married in Shreveport when we return, and I would, we both would, like to have your blessing. We intend to be married in the backyard of my home, possibly the first weekend in September, unless some legality postpones that date. I will be returning to Shreveport to make the arrangements and would hope to see you as soon as possible after my return so as to discuss your wishes and ours."
She bought a wedding dress for $100 in London before returning to Shreveport. They did marry in his backyard with family and church friends present. Her twin sister, Frances, was by her side. His brother Mike was by his side. He, of course, wore tennis shoes.
"It was very homespun," Ellen said.
Building a life
That marriage in September 1970 has lasted 52 years, through two children, Kate, born in 1978, and Joel, born in 1983; multiple jobs and relocations; and now three grandchildren.
They came to Austin, following her twin sister, and Ellen became a fifth-grade teacher, then a principal, working in the Austin school district at T.A. Brown, John B. Winn, Highland Park and Oak Hill elementary schools. He worked for Whole Foods and taught science at O. Henry Middle School.
Their children were born at Seton Medical Center.
"He just loved our babies," Ellen said.
He rode his bike all over Austin, including from their home at the time in Travis Heights to Oak Hill, where the babysitter was, to his job at O. Henry. He took up photography and art.
He indulged his passion for walking. He loves to be outside and explore the world. He had been a Boy Scout as a kid and a paperboy. He still brings his neighbor's paper to her every day.
"I'm still a paperboy at heart," he said.
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The diagnosis
A year before Joe was diagnosed with mild cognitive impairment, Ellen began talking notes. Things just felt off. Their first doctor didn't think anything was wrong. Joe passed all the tests.
A second opinion in 2013 found that there was a reason sometimes Joe would say things that didn't make any sense.
"I didn't like the doctor," Joe said.
By 2016, it had progressed. They knew Alzheimer's ran in both of their families. She had two older sisters with it. His mother had it.
With the diagnosis, their new doctor got him started on medication to deal with some of the symptoms.
Joe, being the reader he is, started reading up on this disease he had. He found "The Alzheimer's Solution," by Dean and Ayesha Sherzai and began to follow the recommendations in the book.
There are four things Joe knows he needs to do every day:
Diet: Joe now eats mostly vegetarian and limits his sugar. They cook dinner together.
Exercise: He walks 5 to 6 miles a day. He is not a wanderer. He walks a circular loop. His neighbors know him, and Ellen keeps up with where Joe is by tracking his phone. He also walks to the Randalls by their home every day to pick up groceries for dinner.
Having someone to talk to: "We keep a robust social life," she said. They do not hide him away, but often the groups are smaller and with people who know.
Practice: There has to be something that he looks forward to every day: going for a walk, picking up groceries, cooking dinner. For him, that has meant having a routine.
Every Monday, they sing in Love Notes, a choir of people with dementia and caregivers.
"He knows the lyrics more than I do," she said.
It's all classic songs that are part of his long-term memory. He's also a voracious whistler, which helps him tap into songs.
They are in a church book club. He'll read the book, or if it's complicated, they'll listen to it on Audible. Right now they are reading "The Sea Around Us," by Rachel Carson.
On Thursday mornings, he goes to the House of Friends respite program at Bethany United Methodist and she gets time to catch up on errands or phone calls.
On Fridays, she attends a virtual support group through AGE of Central Texas.
"I had to not feel like I was trying to figure this out by myself," she said.
On Sundays, they go to church.
They write down all of that day's happenings on a white board with the times and erase them as they do them, which is very satisfying, Ellen said. That also helps him know if he can go for a walk or if something is about to happen.
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The ups and downs of Alzheimer's
"I had a time when I thought it was the end of the road," Joe said. "I was angry. ... I felt like I had fallen off."
He wasn't showering. He wouldn't listen to Ellen. They tried couples therapy, but it wasn't working.
He had to be hospitalized and have his medications adjusted. She had to work on meditation and therapy.
"I was absolutely worn out," she said. "I couldn't live with his temperament. It was out of control."
She also had to adjust her expectations of him.
Medications and having a routine have made a big difference. So has a clinical trial he's been participating in since 2020 for lecanemab, which was approved this year by the Food and Drug Administration. Every two weeks he has an infusion that is expected to slow the progression by about 27%.
"I feel better all the time," Joe said.
Now, Ellen says, "Joe contributes a lot. It's important."
In addition to doing the grocery shopping and cooking with Ellen, Joe does the dishes, making sure each night the sink is clean, before going to bed.
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Preparing for the future
"It's hard to think about when things are going so smoothly," she said of the future.
They have put a deposit on a retirement community with memory care if Joe should need it.
They also have 10 people on a list on the refrigerator with phone numbers Ellen can call if she needs something.
"It makes you grateful to have a support system," she said.
There are people who will take Joe to lunch or help her around the house. When Joe was hospitalized, these are the people who showed up and sat with him at the hospital when she needed them.
They also have a person who comes in four hours a week to help them. It's covered by insurance.
They continue to look forward to traveling, including to Paris, where their daughter lives with their grandchildren. They've learned about a card Joe can carry that explains he has Alzheimer's and might need more time with instructions while going through security.
Alzheimer's has changed their relationship. She's learned to be more tolerant of him and not blame him. He's learned to listen better to what she needs him to do.
"Everything that she does is sweet," Joe said.
"That's not true," she said.
Joe keeps a small green ceramic turtle in his pocket. It's to remind him of this mantra: "slow and steady."
Take it a step at a time.
If he can't remember something, if he can tell his responses are unusual to the question asked, he'll say simply. "I'm a person with Alzheimer's."
Resources for families with Alzheimer's
Faith Lane, the program director for the Alzheimer’s Association Capital of Texas Chapter, shares these tips and resources:
Adapt activities to meet the needs of the person with Alzheimer's. That might mean playing a game as a team, rather than as individuals. It might mean going for a walk with someone else, rather than walking alone.
Remember why you love each other. Focus on the shared memories of falling in love and raising a family.
Join a support group. There are groups for the caregiver and the person with Alzheimer's. AGE of Central Texas and Alzheimer’s Association Capital of Texas Chapter host virtual and in-person groups.
Ask for help. Ask friends and family members for specific ways they can support you. People want to help, but they need guidance.
Call the 24-7 help line, 800-272-3900. A licensed clinician is on the other end and can help you talk through issues and work out a care plan as well as connect you to resources.
Take breaks. Self-care is important. Find respite programs at churches or through AGE of Central Texas. Create your own respite by having a friend or family member visit regularly.
Find resources. Go to alz.org/help-support/caregiving and find resources by stages of the disease.
This article originally appeared on Austin American-Statesman: Love continues to grow this Valentine's Day for one Austin couple
