By Annie Krall
Medill Reports

“I’m up early. My body wakes up at 7:00 a.m. whether I want to or not.” said Carol Segal, a Minnetonka, Minnesota, grandmother who deals with the common struggle of a restless night and an early rise during this COVID-19 pandemic.

Greeting the day just an hour and a half after the sun rises isn’t because Carol needs to rush off to a morning commute from her bed to her stay-at-home office. She has a much more personal and perhaps far more challenging form of work than many other Americans. Carol is her husband’s full time caretaker.

Dr. Sheldon Segal’s morning starts when his wife wakes him around 11:00 a.m. For a man who was a surgeon over decades in Minnesota, Sheldon has already caught up on his medically induced sleep debt. The reason Carol doesn’t stir him earlier in the morning is because “all he’s going to do when he comes down is …” Nothing. She sighs. As heartbreaking as it may be, Carol can’t even bring up the word to finish her own sentence.

Sheldon has dementia. The neurodegenerative disease affects most of his everyday activities and it has impacted Carol’s day to day life just as much. In the United States, 5.7 million people were living with dementia in 2018, according to the Alzheimer’s Association. Dementia is an umbrella term for a number of different kinds of neurodegenerative diseases that slow down memory, language, and strength capabilities in older adults. Each illness is different and each person’s symptoms are unique.

It’s unclear what form of dementia Sheldon suffers from. Yet, its effect is very real. It is Carol’s responsibility to cook, clean, and make sure Sheldon receives her assistance every day since she no longer can have in-home medical care due to social distancing guidelines. She can’t risk having someone come in who may infect both of them since they are in their 80s and  considered high risk. But some moments of caregiving over the last few weeks have been as comical as they are heartbreaking.

“The other day he went to get dressed. I pick out his clothes every day and lay them on his bed,” Carol shared. “He got dressed. Then, he put his pajamas on top of his clothes.” She chuckled over this memory. “You almost have to laugh because it’s like ‘ok’. Because if you didn’t laugh you’d be crying… I still love this man.”

Sheldon’s family began to notice changes almost 10 years ago. It started out as normal forgetfulness, according to Carol, with smaller changes that her kids had also started to see. Then, his top of the class intellect began to slip away from him. He wasn’t able to balance the checkbook without a calculator like he used to do. He became passive during one of his daughter’s wedding planning arrangements, something he would have normally been an active participant in. These were changes Carol hadn’t anticipated even though Sheldon was in his 70s at the time.

“If people were still able to use reason and logic then we wouldn’t be talking about dementia, we would be talking about something else,” said Christy Turner, a certified dementia practitioner and founder of Dementia Sherpa. Dementia Sherpa is a business built to teach caretakers about dementia strategies and Turner has traveled all over the country presenting to caretakers about the best ways to through these neurological changes. When it comes to speaking with a spouse or parent dealing with dementia, “a lot of caretakers continue to try to use reason and logic because it’s worked for us for so long. We’re not understanding that reason and logic isn’t working for someone with dementia.” After caring for over 2,000 dementia patients herself, Turner recognized it can be difficult to find common ground in day to day life. “We sometimes double down on logic and reason. It creates a lot of frustration and bad feelings that can be avoided.”

Support for caretakers like Carol is key in making both their person with dementia and their own life manageable. “The person living with dementia needs the support of lifestyle changes,” according to Dr. Wayne McCormick, Head of Gerontology and Geriatric Medicine at the University of Washington and Harborview Medical Center in Seattle, Washington. “They need the support of the caregiver. The caregiver needs the support of the medical system, those healthy lifestyles, and the support network to staff up or scale up as necessary. It’s kind of a cascade or a pyramid of support for anyone with dementing illness over time.”

A lack of support makes an already stressful caretaking situation even worse. According to a study published by the American Psychological Association, “levels of psychological distress and stress are significantly higher, and levels of self-efficacy, subjective well-being, and physical health significantly lower, in dementia caregivers than in other caregivers; these differences are even larger when compared with non-caregivers.” Meaning, dementia care is oftentimes a psychologically harder task than caring for someone with cancer or someone who has suffered a stroke.

All this stress would be undoubtedly easier if there was someone to talk to in the house. Carol and Sheldon have four children (a fifth passed away as an infant) including two who live in the Minneapolis area. However, due to social distancing restrictions, their children can’t come over except for an occasional backyard visit when the weather is nice. They fear they may expose their parents to COVID-19. So, Carol spends her days typically talking to Sheldon. Most of the time, “I’m doing the talking,” Carol said. “He does listen. He is very affectionate. He is very appreciative of whatever I do.”

Carol was quite the card player before the coronavirus outbreak. Socializing with friends four or five times a week allowed her to still keep some semblance of her life before Sheldon’s diagnosis. She had the financial means to bring in home care so a medical professional could keep an eye on Sheldon plus taking him on field trips to museums, the movies, and restaurants. Now? She can’t have the added help.

“It’s so much worse,” Carol said. Her day now consists of making food for the both of them which Sheldon typically won’t touch. “He has zero appetite.” After a very light breakfast, Sheldon won’t have enough energy to do anything besides go and lay on the family couch. As evening rolls in, the couple may try and watch a movie together. However, it’s never a sure bet Sheldon will keep his eyes open the whole time. By 9:30 pm or 10:00 pm, Carol and her husband go up to bed where Sheldon will fall right to sleep. Carol stays up and reads a bit beside him. They used to be able to read together. Sheldon was notorious for finishing an entire novel in two nights. However, Carol hasn’t been able to participate in their two-person book club since his diagnosis. He doesn’t read anymore because “he can’t remember what he read the night before.”

Due to this pandemic, Carol can’t help but recognize how much and how little has changed in her life over the past few years with her husband. “Obviously in the beginning I did a lot of crying,” Carol shared. “I don’t cry so much anymore. I just try to hold my patience because I don’t want him to feel diminished.” As she speaks, there is a breath of sadness that is almost unbearable to hear. “It’s a very lonely life,” she said.

Yet, even the smallest of smiles from Sheldon still makes Carol feel blessed. “He’s just sweet,” she explained. She doesn’t acknowledge how challenging her situation would be for so many other people. “There are times when some of it is funny and some of it isn’t,” Carol said. “He is very lovely, very kind, and I’m very lucky for that.”

More than once, Sheldon will get a strong sense of recognition in his eyes that he is the one who lucked out when he first met Carol. Looking up at her from the family couch or the kitchen table he’ll say to his wife, “‘I wonder how I found you all those years ago.’”

1955 – Minneapolis, Minnesota

 Carol and Sheldon’s love story began in 1955. Dwight D. Eisenhower is president. The Mickey Mouse Club debuts on ABC. Rosa Parks is about to make history for not giving up her bus seat on a chilly December evening in Montgomery, Alabama.

Massive tail-finned cars are all the rage on the road. The Jitterbug dominates high school dances. While moving and grooving to “Mr. Sandman” by the Chordettes, young people  find their groove in their first swoon of love.

One such heart sick boy is Sheldon. A whiz at pretty much any mathematical or scientific problem you put in front of him, Sheldon is on his way to medical school at the University of Minnesota in Minneapolis, when he comes across a puzzle he couldn’t quite solve. Her name is Carol.

Carol Straus is 16. Her brother is 20 and a member of the Sigma Alpha Mu fraternity at the University of Minnesota. As Carol’s supportive older brother, it was his duty to make sure she had some fun as she started to transition into womanhood. That meant, inviting her to one of his fraternity parties.

Pretty, talkative and tapping the beat, Carol drew the attention of her brother’s friends and the other fraternity men at the party. The popular teenager began getting asked to a number of different fraternity events. Including one at Phi Epsilon Pi – Sheldon’s brotherhood.

He first saw her at one of these campus fraternity parties. He was only two years older than her but, since he had graduated high school at 16, Sheldon was already a wise college man. In fact, the pre-med student was about to graduate from the University of Minnesota to begin medical school at age 18. Not only had he graduated from high school two years early, he was also going to complete the typical four year undergrad pre-med track in just three.

But it wasn’t his extreme intellect Carol first noticed from across that party floor. She would learn all about that side of him later. It was his good looks that caught the high schooler’s eye. There was a lot of sex appeal right off the bat to draw in the young woman. But in order to keep the typical 1950s proprietary alive and well, Carol didn’t want to jump into anything too soon.

Sheldon didn’t feel the same.

He immediately asked her to one of his fraternity formals. Carol said no. She wasn’t playing coy. She just didn’t really know him. She wasn’t prepared to go out for a night of cutting the rug at a formal dance with Sheldon and his fraternity brothers. Even with an admittedly very handsome stranger. To her, it seemed ridiculous to go with someone she didn’t know.

Still, it didn’t deter Carol from wanting to go to the formal with someone else. Someone that she did know at Phi Epsilon Pi would almost definitely make a better date for the night on the town. Carol’s mother thought differently. She said that Carol couldn’t go to the formal with any other fraternity brother because Sheldon had asked her first. Rather than digging her heels in over the matter, Carol decided to take a chance.

The chance would change her life.

Carol insisted that Sheldon take her out on a proper date before they were to head out on their formal adventure. It was only proper in the days of jukeboxes, Archie comics, and going steady that you knew a person a little better before you put all your romantic chips on the table.

Their first date was at the University of Minnesota’s notorious annual Campus Carnival, an iconic event full of youthful fun and frivolity. Sororities and fraternities would set up carnival inspired stages and sets that could rival a young P.T. Barnum if he had only a student organization budget to work with. Girls from the Alpha Epsilon Phi sorority could be seen sitting two stories high on a metal structure typical of most carnivals which surrounded a massive clock. The purpose of the Campus Carnival, which began in 1947, was to fund raise for student scholarships. The spectacle was completely and totally organized by the University’s Greek system.

On that first date, Carol and Sheldon began to allow their love to blossom. The smitten girl not only had a striking gentleman by her side, but he made her laugh. His sense of humor was enticing but smart. While walking through the carnival and speaking to this future surgeon, Carol couldn’t help but think he was the smartest person she had ever met. Her internal monologue also included a realization that his humor and intelligence were surrounded by a sense of true caring and love within his heart. If this was love was supposed to be like, Carol had found it amongst the popcorn and carnival games. After their first date, Carol ran home to her mother saying, “I’m going to marry him.”

One day, Carol would make good on that promise.

Two years later, Carol became a University of Minnesota Golden Gopher herself. All the while dating her medical student boyfriend who was continuing his education at the university medical school. When deciding what to study at college, Carol chose nursing. She found the subject matter interesting. Not to mention it allowed her to keep an eye on Sheldon. Carol wanted to be on the same side of campus as her beau since their relationship had started to progress into the typical 50s style romance.

Carol was lavaliered with a necklace displaying Sheldon’s Greek letters. Then, Carol was pinned, a sign to everyone that wedding bells were on the horizon.

After four years of dating, a necklace and a pin were replaced by a ring. Sheldon proposed and the pair married in 1959. For the couple, it was important that Sheldon finish his schooling prior to their marriage. Plus, Carol was only 20 at the time she donned a white dress and glove pairing that could rival any Italian meringue.

They were in no rush to tie the knot. They now had forever together. They married in 1959.

Her two-year nursing program landed Carol in the same hospital as Sheldon. And if he needed help in his office, Carol was qualified to step in. During their early days of matrimony, he would perform surgeries and bring notes home to his loving wife to be typed. Rather than just needing to keep an eye on her significant other, Carol’s nursing training allowed her to have meaningful conversation with Sheldon about his work. She could type up his notes and recognize medical jargon that needed to be correct. Of course, like any self-respecting doctor, his handwriting left something to be desired, but it was legible enough to serve for engaging dinner conversation. Carol admits that while she could assist in this way, she didn’t feel she was his intellectual equal at the time. “He is so much smarter than I am.”

To graduate from college as a woman in the 1950s was a groundbreaking accomplishment in itself. To consider going to medical school seemed almost unthinkable. Yet, don’t be fooled that a woman with so much emotional and intellectual savvy couldn’t have earned her own white coat had the times and her own motivation encouraged such a feat.

The couple decided to stay in Minneapolis for Sheldon to practice, landing in the suburb of Minnetonka where they began to raise their family of four children. The town holds a lifetime of memories for the Segal family.

For example, Sheldon was elected as the first and only ringside physician in the state for boxing matches. Someone had asked him to help out with the Golden Gloves and so the surgeon became the doctor on duty for a multitude of bloody lips and black eyes in Minneapolis. Sheldon would eventually earn his own spot in the Minnesota Boxing Hall of Fame as a Ringside Physician. From there, Sheldon’s entertainment medical work escalated into musical road shows for bands who performed in Minneapolis. The legendary Bruce Springsteen was one such lucky musician who was under his watchful eye.

It may sound like a cash cow operation. Big names come into the venue, Sheldon cleans up some bruises, walks out with a chunk of change earned in a significantly less stressful situation than surgery. But he didn’t do it for the money. He worked the boxing and concert venues so that his kids could get behind the scenes access to the stars.

On one such occasion, Sheldon and Carol’s fourteen-year-old daughter was backstage with her dad. A cute young woman, she took after her mother in catching the attention of people when she walked in the room. During this concert, Sheldon couldn’t find his daughter, not a great situation for a father and his maturing little girl. All of a sudden he comes across her in a room with the band members! Disheartened and leaving the room, his daughter said, “Dad! You came in right at the wrong time!” Mildly concerned, Sheldon thought to himself “What are they going to do with her?”

Lo and behold, they were teaching the young girl how to roll a marijuana joint. At one show in the 80s, he yet again went backstage to get his daughter as she was having a ball with a gang of long-haired rockers. After pulling her away to take her home, Sheldon said, “They were such a motley crew.” His daughter, impressed at her ability to hang with such a squad, nodded approvingly. She had indeed been spending time with the infamous heavy metal band Mötley Crüe.

Maybe Sheldon didn’t know about the band that fascinated his teenager. Or maybe he had forgotten.

2020 – Minnetonka, Minnesota

Fast forward to 2020, it seems significantly more somber than the swinging 1950s or the hustle and bustle of the rock and roll 1980s. The inevitable has happened. Time has passed.

“I do feel for spouses in particular,” Turner said. After working in nursing homes and directing care facilities across the country, Turner has seen how impactful a disease like dementia can be on those who aren’t even diagnosed. “It’s extraordinarily tough because they are going from a situation where it is two equals in a typically decades-long relationship. Where now your equal is someone who requires ever increasing amounts of support, of personal care.”

Grief even before death is all too real in dementia cases. “There is a loss of the life you had together before the symptoms appeared,” Turner explained. “The grieving of the loss of the life you thought you were going to have in the years to come. A lot of people when we think of the things we look for in a partner isn’t only love.” In her work, Turner has found that what spouses miss most is their partner’s ability to make them laugh or be intellectually stimulated with deep conversations. “When that changes significantly, of course the spouse is going to be grieving,” Turner said. When it comes to caretaking for a spouse, “that does add an extra layer of complication.”

How is love different from friendship or companionship? Some would argue that you can not have love without the two. Otherwise, that is just lust. Love is knowing another person completely and totally. Then, allowing them to know you in return. When they forget those pieces of you and themselves, it makes their love different than what it was before.

How can you try to combat the loss of your partner who may still be sitting next to you on the couch? Turner advises professional medical help. People who work in long term care either at the resident’s home, a nursing home, or an assisted living facility “take your person and love them for who they are right now,” Turner explained. “We’re not grieving who they used to be or who they could be in the future. In many ways that can make us more effective because we aren’t grieving at the same time as we are trying to offer assistance and care for someone.”

But sometimes that can be challenging to accept outside help. “I really didn’t want the extra help,” Carol explained. “It was sort of forced on me by my family. You get to a point when your kids are running your life.” Carol felt she was able to bear the burden of Sheldon’s care on her own. She also never wanted to put him in a home for the same reason. She didn’t like the idea of needing help.

“The hardest time I had was the first few weeks when the [in-home caretaker] would come,” Carol remembered. “When he first started taking my husband out, I would close the door and just bawl.” Standing on the stoop of their Minnetonka home watching her husband go out on a field trip without her, Carol revealed how strong their marital bond truly is to this day. “It was so hard for me to let him go.”

“When a spouse says I have trouble trusting an outsider or a staff member because no one can care for a husband the way that I can, I say that is absolutely true because every person is a unique individual,” Turner said. In the world of spouse caretaking, Carol’s plight is not an uncommon one. Many significant others feel they can’t or shouldn’t allow for the assistance of the medical system to take up their yoke.

Turner highlighted the example of a hypothetical Mrs. Garcia and her husband dealing with dementia. “Mrs. Garcia’s husband will never be cared for in exactly the same way as Mrs. Garcia by any other person on the planet because nobody can replace Mrs. Garcia,” Turner said. “That doesn’t mean that David and Vanessa aren’t fantastical and magical caregivers. It just means that they are going to have a different way of doing it.” Marriage is indeed a solitary bond that two people have the privilege of sharing. But professional caretakers can be pivotal in the life of a husband or wife suffering from dementia. “It doesn’t make either situation wrong or bad. It’s just different,” Turner said.

2020 – Elgin, Illinois

While some people may not be lucky enough to find their eternal caretaker in college, a couple can still cultivate everlasting love later in life. That is especially true in the love story of Tom and Levi Doyle. After a decade of marriage, they realized they would always have the other to lean on, literally and physically. And illness wouldn’t change that.

“A little higher, Tom.”

“Levi, a little to the left.”

“Hold it right there!”

“10 more seconds. Great job!”

The words of a physical therapist over Zoom ring through Tom and Levi’s Elgin apartment as Tom completes yet another exercise session during the pandemic. Levi is acting as the camera man,. moving phones, laptops, and tablets around so that the physical therapist can see the exact angle and trajectory of Tom’s limbs to make sure he is performing the exercises properly. Levi also serves as a human support system – literally. Tom will hold on to his husband during his physical therapy sessions when resistance bands become involved, aiming to strengthen the muscular dexterity Tom has left.

It’s quite the workout for Levi as well, even though Tom is the one who suffers from Lewy Body Dementia and Parkinson’s disease. It’s a combination that differs from the more commonly known Alzheimer’s disease. But all three are under the umbrella term of dementia.

In the case of Alzheimer’s disease, “the brain literally shrinks a bit from the degenerative effects of a couple of chemicals that increase in amount in the brain,” according to McCormick. Those two chemicals include amyloid and Tau proteins. “Plaques of amyloid arise in lots of areas of the brain and everyone is a little bit different about where those areas are [in dementia patients],” McCormick explained. Tau is also circulating through the brain which causes part of the problems in some dementia patients. Like if you had a clogged freeway, it would be difficult to get to where you need to be. The brain of a person with dementia can be similarly clogged because of these chemicals.

McCormick emphasized that, “the overall effect is that the brain very slowly degenerates, shrinks, and loses function as a result.” Keep in mind there is no one size fits all model for dementia. “Each person manifests in a little bit different way because we are all different,” said McCormick, who has worked in geriatrics since 1990. “Also because those degenerative processes vary from one person to the next.”

With Lewy Body disease, Tom’s cognitive decline has been minimal over the past five years. However, he struggles with severe physical deterioration. Tom has lost almost all his visual and spatial skills making it impossible for him to drive. His short term memory is weak as is his executive functioning for a man his age. Luckily, his long term memory has remained stable. Physically though, he continues to struggle with his sense of balance and he shakes. Two typical symptoms of people living with Parkinson’s.

Tom and Levi’s lives weren’t always a constant cycle of physical therapy and doctors appointments. When they first met, it was easy. An interaction that all began, with a simple smile.

2005 – Riverside, California

In the spring of 2005, Tom steps into an Alcoholics Anonymous (AA) meeting in Riverside, California. He is a full-time professor of education at National University in Los Angeles where he has been teaching for nearly two decades. His graduate students are earning their teaching credentials. His life completely revolves around education. He lives, eats and breathes his lessons in a way that allows his students to become just as passionate as he is about passing on information to the next generation of students. Except, during this AA meeting it is Tom’s turn to learn about the law of attraction.

Tom sees a cute man join the meeting and he smiles at him. Both players in the game notice the energy in the room shift. Why? Their eyes had met. Tom’s debonair smiles caught Levi’s attention. Immediately, Levi could tell – ‘He likes me.’ The gentlemen exchanged pleasantries and sure enough, Levi thought to himself, ‘Well I like him.’

In no time at all, the two started going together to AA meetings as friends. Eventually, their friendship blossomed into romance and they were married after three years of knowing each other’s smiles in 2008.

They were married at the First Lutheran Church of San Diego. With it’s monumental white steeple, it was a fitting scene for the groundbreaking couple getting married under its roof. As an interracial gay couple, Tom and Levi were used to breaking the mold. They were the first gay marriage at the church.

 

In retrospect, they were pioneers. They had married in the state of California seven years prior to the 2015 Supreme Court ruling that it is unconstitutional for states to ban same-sex marriage. The case of Obergefell v. Hodges legalized same-sex marriage in all 50 states. A validation that Tom and Levi didn’t have on their side when they were tying the knot.

Their 2008 marriage was legal in California. But the state government didn’t really know what to do in terms of social security and filing a joint income tax return for the couple. It was a time of limbo for the pair largely because in 2008 the federal government had yet to recognize gay marriage. However, some states like California, Maine, and Washington did.

Their life carried on. The June 26th, 2015, court ruling marked a momentous celebration in American history and things began to change. Not only in the equal rights movement, but in Tom’s brain.

At National University, he started to have problems remembering his lectures. When students would raise their hands to ask a question, sometimes Tom wouldn’t know how to answer them. He even caught himself unable to recall his own questions he had asked students.

Something was wrong.

At the age of 63, it was relatively early to be having these kinds of cognitive difficulties. Tom went to his physician to see what might be the matter. That is when it happened. The saga of doctors appointments, tests, and neurologist visits had begun to try and figure out what was going on in the mind of Tom Doyle.

The initial diagnosis was mild cognitive impairment and Parkinson’s. This diagnosis changed a number of times because no physician was positive about what was exactly happening to Tom. During this medical investigation, he had to retire and go on disability from teaching. The one thing that had given him a purpose, that had brought him so much joy, was gone.

“I was devastated when I was diagnosed,” admitted Tom. “The passion of my life was to teach. I had done it for 45 years. Now, all of a sudden I wasn’t able to do the thing that I love doing the most.” After leaving his position in October 2015, the couple moved to Chicago in 2016. The move brought loneliness for Tom who had spent 25 years at National University in Los Angeles.

Even though he had Levi by his side, “I felt at a complete loss,” Tom said. “My colleagues called me for the first six months. After that time, no more phone calls.” His life of activity in the university community doing research and administration activities was replaced by endless days of nothing. “Working one day and on disability the next day.”

There was a silver lining to be had in the Chicago move. Tom found the world renowned Northwestern Mesulam Center for Cognitive Neurology and Alzheimer’s Disease. That is where he finally received his diagnosis of living with Lewy Body disease and Parkinson’s.

2020 – Elgin

Tom also suffers from REM sleep disorder due to his Parkinson’s symptoms, a condition that doesn’t allow him to sleep for more than an hour and half to two hours at a time. After about two hours, he wakes up with a vivid dream and finds it impossible to fall back to sleep. Sleeping next to him, Levi has noticed how Tom will talk in his sleep or open his eyes while still dreaming. He has even crashed through a glass table while sleepwalking.

While many of us have likely dealt with a sleepless night or two due to the global coronavirus outbreak, the fear of the invisible enemy might not be as terrifying to the Doyle couple who have already had their lives completely changed in recent years.

Tom has been able to keep up to date though with a rapidly evolving world thanks to his daily dose of news consumption. He gets up around 1:00am every morning due to his REM sleep disorder, and starts his day in this pandemic stricken world. After making an iced coffee, which he does on his own as his husband sleeps, Tom sits down at his computer to see what the latest overnight updates might be.

After tiring himself out with sometimes six hours of reading, he eventually drifts off in his chair for his first cat nap of the day.  That is the time when Levi begins to stir. The symbiotic relationship of their household is hard to overlook. As Tom begins to rest in the morning, Levi makes an iced coffee as well. Something his husband had been able to enjoy hours and hours ago.

By 7:00 am, the life of a dementia caretaker in the age of social distancing has begun. Levi takes their dog out for a walk in their new neighborhood of Elgin. A geographic move from downtown Chicago motivated by a decision to be closer to Tom’s family. If necessary, there would be an extra set of hands to take care of Tom or help Levi with household tasks.

Every day, the pair typically has a doctor’s appointment or therapy session to check on Tom’s health. In light of social distancing measures, all of those sessions have gone virtual. While describing one of these virtual physical therapy sessions, Tom revealed he had worked through quite an extensive series of motions that morning. “So did I,” Levi joked. A small yet tangible moment of the strength each man possesses and has been able to nurture in the other.

“We are adapting to the new situation,” Levi said. “We’re physically more isolated than most people but in a way we are more connected with people.” A worthwhile sentiment in the age of electronic communication. The couple has contact practically every day via phone call or online with a Zoom and FaceTime call to friends and family.

They regularly speak to friends, who Tom and Levi have met through the Northwestern Mesulam Center as well as the Illinois Chapter of the Alzheimer’s Association. The Alzheimer’s Association friend group used to grab coffee weekly. Now, they hop on the phone or Zoom to check in on their buddies.

“I think people need community,” said Annette Sandler, former co-chair of Twin Cities Jewish Community Alzheimer’s Disease Task Force. An organization formed in the Jewish Family and Children’s Service of Minneapolis (JFCS) in 2007 after a group of dementia caretakers asked for a stronger facilitated support system. Sandler elaborated that, “sometimes, the community doesn’t have to be very big but you have many different communities you belong to.” For example, “your friends are a community, your faith community, your family community, your neighborhood.” These are all key factors in building a ladder of care for the caretaker themself. Sandler recommends to caretakers “knowing who you can make your team. One of the things that is really important in caring for someone with Alzheimer’s is creating your team.”

For Tom and Levi, their support team includes family and friends but also the Alzheimer’s Association in Chicago. “It was really hard on me until I got involved with the Alzheimer’s Association,” Tom explained. “That changed my life and our lives for sure because of the Alzheimer’s Association, we started to go to support groups and I started to make friends and people understood how I was feeling. It was very therapeutic.”

The Alzheimer’s Association was brilliant in identifying that Tom still had gifts even with his disease because of all his years of teaching. Tom sits on the Alzheimer’s Association Illinois chapter board as one of two people living with dementia. “The Alzheimer’s Association gave my life, meaning purpose and joy again,” Tom shared. “When I had lost all of that, I owe my life to my Alzheimer’s Association. They have just been there for both of us absolutely.”

The couple has been able to both meet people and share their lives at the national and local level through presentations with the organization. They lead a seminar last year at the Wisconsin chapter of the Alzheimer’s Association discussing what it’s like to be gay and have dementia “because it’s an underrepresented population,” according to Tom. He said, “often, they are the last people to reach out for help because they don’t recognize that they have the symptoms, they don’t know what it is, they don’t know who to call, and they don’t know who to talk to.” He recognizes his situation with Levi isn’t like that. “I have all of that. I’m really blessed. Levi has been just a God sent, as my physical health has deteriorated he has just been a lifeline for me.”

The subject of love is not far from either man’s mind when it comes to their mutual care. “We do love each other. We care deeply for each other. We aren’t only husband and wife. But also best friends,” Tom said. Levi chuckled next to him and asked, “Husband and wife?” Tom responded with a simple “Well…” and a good laugh with his partner. “We have it a lot easier than a lot of gay people do,” Tom emphasized. “So many people who are gay and have dementia are also single. They find it much more difficult.”

Tom and Levi also consider themselves lucky since Tom still has so much of his cognitive facilities still readily available. He understands what is happening with the pandemic, how our medical system is responding, and what actions are necessary to stay safe. McCormick highlighted that bringing the subject up with a spouse living with dementia who doesn’t have as many neurological capabilities as Tom may be dangerous.

“It’s good to be able to respond if people are worried or anxious because there is just a lot of free floating anxiety these days about the pandemic,” McCormick said. “Having a reasonable and short response, if asked by the individual is fine. Otherwise, I’m not sure I wouldn’t wake sleeping dogs to bring it up.”

That is the course of action Carol has taken with her husband – keeping him comfortable rather than sharing potentially worrisome information. It is yet another example of how two relationships struggling with similar diseases and with the same lens of love can deal with situations so differently.

Time, age, and health are guaranteed to change. But our love for another human being can oftentimes be one of the most constant parts of our life. Unfortunately, so is the demise of our body. A subject those of advanced age have had to grapple with. “People when they reach that age often are very accepting of the end,” McCormick shared after working for decades with geriatric patients. “They’ve thought about it a lot. They’ve had innumerable family and friends pass before them and some wonder why they are still here in a dispassionate way.”

Whether it is a spiritual question, medical experts and religious experts agree and disagree on the question of the end constantly.  “It’s not that they are worried about it as much as just accepting of it. It’s probably less of an existential question, especially if someone has a dementing illness, and more of an acceptance of the fact that the mortality rate of our species is 100%,” McCormick said.

When asked, Carol confronts the subject of death yet again, with Sheldon in mind. “I’ve had a lovely life with him,” she stated. “Now I’m going to cry. He is a great guy. We’ve had a fabulous marriage,” Carol said.

But her life with Sheldon wasn’t just about their love, it was and always will be about the legacy the pair leave behind when they eventually pass on. “I’ve been blessed with four great kids who turned out amazing. Financially, I am comfortable. I have a lot to be thankful for. We did a lot of traveling. We had a really nice life,” she wistfully remembered as she mentally combed through the memories of the past seven decades with Sheldon.

Carol sees so much of herself and her life through his eyes. “He deserves to be treated with respect and dignity and I plan to be here to the end.” Her closing words are a chilling reminder of our mortal reality and a rejuvenation of the hope for eternal love. “My main prayer is that I live one day longer than he does.”

Annie Krall is a reporter in Medill’s Health, Environment and Science Specialization