Lena and Edwin – Part 3

 

This blog is the third and final installment of the story of Lena and Edwin Michales. You can read about their early lives together here and the progression of Edwin’s dementia here.

Edwin was finally home from the adult behavioral health center. His medication had been adjusted. He was now taking 13 medications total, which Lena managed for him. He seemed to have leveled out. They were looking forward to the rest of the summer. Both had been vaccinated. They had season tickets to the symphony, and because few people were going out due to the pandemic, Lena and Edwin could go out to dinner without it being too stressful or triggering for him.

“We had a pretty good quality of life for where we were.”

Edwin’s dementia was still present in their lives, of course. The couple had six grandchildren they weren’t able to see due to the COVID-19 pandemic, and Edwin would ask Lena about how they were doing over and over again. He wanted to know where they were, if they were all healthy, and what was going on in their lives. Lena would answer him every time. She recalls, “We were very isolated because of the pandemic. So we couldn’t get out and see people, and that’s very difficult for a dementia patient.”

Even so, the couple was thriving as much as possible. Edwin still needed Lena to be near him at all times, but his moods and behavior were less volatile than they’d been. They would still sit on their deck in the evenings and look at the trees Edwin had planted all those years ago. Some days they would eat lunch at the park near their home.

Then, Edwin started complaining of back pain.

Lena took him to see their doctor, who ran some tests, and sent them home, telling them nothing was wrong. When his pain didn’t get any better, Lena took him back. She says they told her that they’d scanned him up and down, done x-rays, and couldn’t see that anything was wrong. They suggested he go to a rehabilitation facility to help him build up his strength. Lena says, “I thought, you know, they can’t find anything, so let’s try this. And he just steadily went downhill.”

Lena knew something wasn’t right, no matter what the doctors were telling her. She was frustrated with the entire situation. Because of COVID, she couldn’t see Edwin, and it seemed as though no one was taking her concerns seriously. It was the Occupational and Physical therapists at the rehab facility that finally listened to her. “I kept saying to them this just isn’t right. Something is wrong.” They agreed with her. They didn’t feel the issue was physical. They took a look at his medical records and discovered that Edwin had never had an MRI done.

“They’d told me that they’d run all the scans, that he’d been tested for everything.”

Lena hung up with the therapists and immediately called the social worker at the rehab to request that they order an MRI. During that call, she found out that Edwin had been on suicide watch for days. He was in so much pain; he was threatening to kill himself. No one had called Lena to let her know. She was furious, but she bit back her anger and told the social worker that she wanted Edwin transported to the ER right then and there. The social worker said that Edwin would have to wait another 5 or 6 hours before transportation was available. Lena did not swallow her anger this time. She told the social worker, “Call 911. If you don’t, I will. I want him in the ER now. Not in five or six hours.” Because Lena had medical power of attorney, Edwin was rushed to the ER. Lena met him there. She was walking down to the room they had him in when she heard Edwin screaming.

“Stop the pain, please stop the pain!”

Lena had never heard Edwin scream in all their time together. In the ER, they had to use fentanyl to control the pain, and they had to give it to him more than once. Lena spoke with the ER physician and requested that he order an MRI. The physician told Lena that it wasn’t possible; they don’t order MRIs in the ER because insurance companies deem them too expensive. Lena had had enough. She told the doctor, “Maybe it’s damn time you broke the rules!” Whether it was her fury or the pain Edwin was in, the ER doctor ordered the MRI. Then they were able to see it all. And it was too late.

Despite Lena’s pleading with his healthcare team that something was seriously wrong, Edwin had gone a month and a half undiagnosed with an infection that would end his life.

It was an infection he’d caught while he’d been in the hospital or rehab. He’d gotten it from either a blood transfusion, through an IV, or perhaps a catheter. By the time they found it, he had seven abscesses up and down his spine. The infection had spread to his pelvis, his bladder, and his stomach. The infectious disease doctor, his neurologist, and others on Edwin’s healthcare team were called in. For some reason, they decided to speak with Edwin without Lena present.

“I was so angry and very sad.”

They explained to him what it would take to clear up the infection. It would take months of IV antibiotics in a facility. He would not be able to come home, and they would have to get every single abscess. Edwin had a lot of them. He would have to have drains throughout his body. If he survived that, he would have to undergo more surgery to put titanium rods into his spine, fuse, and remove bone because the abscesses had already destroyed the bone. After all of that, he would have a two-year recovery. Because of the infection and his other conditions, the doctors would not say that he would survive any of it. In the end, it didn’t make a difference that they’d discussed any of it without his wife present. When they asked him how he’d like to proceed, he was clear about his wishes.

“Ask Lena. She knows.”

Lena brought Edwin home. She says, “This is where he wanted to be, right here. I promised. And I kept my promise.” They put a hospital bed in his favorite room – in addition to their home that was reminiscent of a log cabin. He called the room his “cabin in the woods.” The first week he was home, their great-grandchildren came to visit. Lena recalls the oldest, their 14-year-old great-grandson, sat with Edwin and held his hand. He spoke to Edwin and told him how much he loved him. After that, Lena says, “I couldn’t stay. I had to leave the room and let them be there by themselves.”

When asked about how she was feeling throughout all of this, Lena says she didn’t cry, and she didn’t get upset. Even when she lost her legs, she didn’t cry. She did what she had to do, and that’s how she approached things with Edwin. She says crying wouldn’t have solved anything. It wouldn’t have made him better, or moved them forward, or taken care of the house, or the bills, or the grocery shopping. And the whole time he was dying, she didn’t cry. He asked her one day after he’d been home, “Why do you look so serious?” And she told him, “Because I just want to take good care of you.”

Edwin lived 17 days after Lena brought him home.

After he passed away, Lena had a small service for him. Because of the pandemic, they weren’t able to celebrate his life in a way that they may have envisioned otherwise. Lena had been a teacher her entire life. Immediately after Edwin passed, her past students were some of her biggest supporters. Walking into their home now, you can see the stacks of letters and cards on the bar in their kitchen – all from students she’d taught over the years.

Lena says for a time after he passed away, she was still so angry. At how it all happened, and at Edwin. But one day, shortly after he’d passed, she was going through the drawers and files in his office. And she came across a photo album. It was full of pictures she’d never seen – pictures of her that Edwin had taken throughout their lives. She’d had no idea he’d taken them. Inside the photo album were images of Lena, living her life, while he loved her from behind the camera lens.

Finding the photo album dissipated a lot of the anger Lena had toward Edwin.

Now, months later, Lena is working to find a way back to herself. She was a caregiver for so many years. She says they were lucky – because Edwin was a veteran, they received respite care in the last weeks of Edwin’s life. However, she recognizes how impactful it would have been for her to have a professional caregiver earlier. “The thing that people need to be aware of, and that I wasn’t, is how badly I neglected my own health. My physical health, as well as my emotional health.” She’s started going back to church and says she may become involved in advocacy in the future, but for now, she’s back in physical therapy, “I need to get strong. That’s part of the healing, being able to do that.”

Lena and Edwin’s story is just that – their story. Unfortunately, however, worldwide, spouses are caring for their partners on their own, with very little support. Often, in Lena’s case, the primary caregiver neglects their own needs to their detriment. Asking for help can be difficult, especially with the stigmas surrounding dementia. But support does exist. If you or someone you know is struggling as a primary caregiver for someone they love, reach out to us. We would be honored to help.

Lena and Edwin – Part Two

This blog is the continuation of the story of Lena and Edwin Michales. You can read about their early years here. This is part two of their story.

Edwin Michales grew up poor in the mountains of Pennsylvania. It was something that Lena says he was always ashamed of, and now she thinks about how much of that contributed to the way his dementia presented. His father was a coal miner, and his mother rolled cigars in a cigar factory. Lena says Edwin never felt well-educated, and that’s because, in all honesty, he wasn’t. He lived in a coal mining community, and the schools weren’t great. When Edwin was old enough, he enlisted in the United States Air Force. One of his assignments landed him in a town on the East Coast, where he met Lena.

Throughout their lives, they traveled the world and eventually settled permanently in the Midwest. They both did work they were passionate about, and were raising two children surrounded by neighbors that were like a second family. They’d lived frugally throughout their younger years, planning to spend their golden years after retirement traveling more, visiting their children and grandchildren, enjoying their interests and hobbies. They often spent their evenings enjoying a glass of wine, looking out over their property and the trees Edwin had planted years before when they bought their house.

They both retired earlier than they’d planned to, at the age of 60. First, Edwin who was diagnosed with MS and found himself exhausted all the time. Then, Lena retired a few years later due to a cancer diagnosis that left her without both of her legs. Even so, they were both active, and were looking forward to traveling and more evenings on the porch. When Edwin first started acting odd, Lena chalked it up to the peculiarities of aging. “All of a sudden, he didn’t trust me to do his laundry anymore. I’d been doing his laundry for 50 years”. She noticed it more when his behavior became even odder.

“He would start following me in his car.”

Edwin became afraid that Lena would leave him and that every time she left the house, she was looking for a boyfriend. Whether she was going to a meeting or the grocery store, he was convinced she was searching for a new love. It was bizarre and nothing she’d ever experienced with him before. At first, Lena wasn’t sure what to think. “We had already been married about 50 years when this started, and I thought, he’s just being a fuddy-duddy in his old age. You know, you kind of put it off to that”. And she did put it off to that until his behavior became more intense.

“His behavior became dangerous – he would physically threaten me.”

It was when things wouldn’t work for him that Edwin would become upset. And it was always in the evening. Lena recalls the first time she felt threatened by him. He couldn’t understand how to use their new thermostat. It was connected by an app that they could adjust using their iPad. When Edwin couldn’t get it to do what he wanted it to do, he became furious. Lena would ask him if he wanted help, and she says you could see on his face that the rage was gathering inside him. He raged at her, telling her, “No! I don’t want your help!” before pounding on the wall as close as he could get to her head. Lena recalls thinking, “this isn’t good; there’s got to be something going on.”

Lena says that you could see how the anger in him was going to escalate into punching. She made an appointment with their primary care doctor, who advised her to tell Edwin he was coming in for his yearly checkup. While they were there, the doctor asked Edwin some probing questions and suggested that Edwin see a geriatric physician who could do further testing and maybe put him on medication to help. Edwin refused to make an appointment. Lena says that their doctor’s office told her that his behavior would not stop – it would escalate. And when it got to the point that she was physically in danger, she would need to be ready to call the police. That’s exactly what happened.

“It was when he came after me with the ax that I first took their advice.”

Lena says that the incident started because Edwin couldn’t get into his home office. They regularly kept the office locked with a key, and they both knew where he kept it. They stored his skeet and trap guns inside his office, and although those were in a locked cabinet, they often had grandchildren visiting and took extra precautions. One day, Edwin couldn’t find the key to his office. Lena went to where he usually kept it, and it wasn’t there. So, he had done something with it, lost it, forgot where he’d put it. But he became convinced that she had hidden it from him. His solution? To break the door down with an ax.

Lena didn’t realize that was what he was doing until she heard it. Weary and perplexed, she went to him and suggested they call a locksmith instead of breaking the door down. Suddenly, she says he yelled, “I should use this on you!” and came at her with the ax in his hand. In their home, you can still see the gouges in the walls, their bedroom door, and a side table, where he missed hitting her. Lena recalls thinking in the moment that she needed to figure out a way to calm him down. Luckily, she kept her cell phone in her apron at all times. She heeded the advice given by their doctor’s office and called the police.

The arrival of the police calmed Edwin down.

Lena explained the situation to them. They made an emergency appointment for Edwin at a Geriatric center in their city and told him that if he didn’t go to the appointment, they would come back and take him to jail. This threat of jail from uniformed authorities was enough to get Edwin to agree to an appointment. He was seen by a team specializing in geriatrics, including a psychiatrist, a social worker, a physician, and a group of nurses. He was diagnosed with dementia and put on a regimen of medications.

When asked if Edwin was aware that he had dementia, Lena says she thinks he knew, though he could never admit it out loud. She said he eventually adjusted to her being the only one that drove or paid the bills. In that way, she says, he knew he couldn’t do those things anymore, so he understood at some level. The change in him was heartbreaking. While Edwin didn’t have the best education growing up, he was self-taught. He was a voracious reader, and because he was so well-read, he had a vocabulary that would “knock your socks off.” Lena says he wrote beautifully and was a photographer, as well as an artist. His drawings are hung up around their home. He loved classical music, and Lena called him her “Renaissance Man.”

“He used to quote Marcus Aurelius to me when we were dating.”

As his dementia progressed, Lena lost more and more of the individual she’d had as her partner for over 50 years. Even with his medications and being seen by a team of specialists, she still found herself in physical danger from him. There were so many incidents, all fueled by paranoia, that had become a part of his reality. She says she lost count of how many times he would come at her for different reasons. One time, he had his hands around her throat and told her he could kill her. Another time, he broke a mug full of hot tomato soup over her head while she was ordering groceries online. “He was convinced that I had poisoned it.”

At the time, she didn’t know that he was also struggling with Major Depressive Disorder (MDD).

That diagnosis would come during an inpatient stay at an adult behavioral health center. Lena had him committed after he held a loaded gun to her head. There was a lot of violence that year. When asked how she felt at the time, having to commit her husband for the safety of both of them, she says she wasn’t feeling much. “By that time, I was numb to everything. I just did it.” While Edwin was there, they did brain scans and changed his medications. They found that his dementia had progressed to “moderate-to-severe” and that he had MDD. He was at the center for just under three weeks.

The professionals at the facility had wanted him to stay longer, but Lena was afraid for him to be there. She recalls that when she would be on the phone with him, residents there, especially women, would come and talk to him to try and get him to flirt. And when he wouldn’t, they would get violent with him. Lena was scared that Edwin would react by becoming violent back, though he never did. The incident that caused her to bring him home early? When he called her crying. Someone at the center had shown him the police reports – all of them – that had been made by Lena when he’d become violent with her. He called her, sobbing, asking, “Am I that bad of a man?” Because of his dementia, he didn’t remember any of that happening. They also told him he would become a ward of the state. Lena says she’s not sure who told him those things or why. She assumes it was part of his treatment. But she couldn’t stomach him being in that situation any longer.

“It broke my heart.”

Lena calmed him down and told him, “No, you’re not a bad man.” She called the facility after she hung up with him and told them she was bringing him home. And she did. They were both happy he was home, but that wasn’t the last time Lena would have to step in as Edwin’s advocate. Months down the road, in the middle of a global pandemic, she would have to do so again. This time, she would struggle between what the doctors were telling her and listening to her gut instinct that something was seriously wrong. Check in next week to read the final part of Edwin and Lena’s story.

Dementia is a tragic, life-changing disease that impacts not just the person diagnosed but the people who love them. If you or someone you know is struggling to care for someone they love, reach out to us. We can provide you with professional resources, support, respite, and care.

You can read Part Three of Lena and Edwin’s story here.

The Rings That Shape Our Lives – Stories from Those on the Aging Journey

Today is World Alzheimer’s Day – a day to raise awareness of the disease process that impacts so many seniors and their families across the globe. When in the throes of the disease, it can be difficult for loved ones to focus on much more than the loss they’re experiencing as they watch the person they love become unable to know where and who they are.

It’s true that as we age, a lot of us may experience certain conditions that impact what our day-to-day lives look like. Last month, we recognized National Senior Citizens Day. September is World Alzheimer’s Month. In October, we have World Osteoporosis Day. This seems to be a season of acknowledging older adults and the conditions that may impact them. But, these aren’t the things that define us. It’s our lives, our relationships, and the events that led us to where we are in our journey that define who we are, not our age or conditions. This month, A Place At Home is starting a new blog series – “The Rings That Shape our Lives: Stories from Those on the Aging Journey.” This series aims to reveal the identities of aging adults beyond their current care needs.

Like our logo, the Tree of Life, we all have roots that we came from, and the seasons of our lives have formed rings that tell the story of “us” – who we were, who we’ve grown into over the years, and who we are now.

Enter Lena and Edwin Michales, the first in our series. The Michales have been married for almost 57 years. She was a teacher; he was enlisted in the United States Air Force. They lived all over the world with their two children and spent time visiting the coasts when they were living stateside, and planned to continue traveling once they retired. But, unfortunately, they had no way to predict the way their lives would look at the beginning of their Golden Years. Cancer, MS, and finally, dementia would create some of the most profound rings of their lives.

This is the first part of their story.

Lena and Edwin met in a coastal town on the East Coast. He was in the military, and she had just graduated from college with a degree in Education. The first time they met was at a social gathering, introduced by a good friend of Lena’s. The next time the two would lay eyes on each other would be almost a year later, both participants in the same friend’s wedding party. Lena’s mother warned her to be careful with Edwin, telling her, “that man is looking for a wife, and he thinks he’s found one in you.”

As it turns out, Lena’s mother wasn’t wrong.

Edwin and Lena dated following their friend’s wedding, and though Lena’s parents weren’t supportive of the match, the couple knew that they wanted to start a life together. They approached the church, who told them that they couldn’t wed without their parents’ blessing. That didn’t stop them. The couple eloped and were married on December 26th. A week later, since they had been legally married already, they had a ceremony in the church. When asked which day they chose as “the” day to celebrate their anniversary, Lena says it was different each year. “If we were tired or broke on the 26th, we would celebrate it on the date a week later. We were often tired and broke on the 26th.”

Edwin and Lena were like most young military couples at the time. They had two young kids and a tight budget with which to afford life. When they were living stateside, Lena shares that they never went on extravagant vacations; they would rent a car, and travel to the East Coast, first to New Jersey to visit with her family, and then up the coast to Maine. Though they ended up retiring land-locked in the Midwest, the ocean has always been a theme of their lives.

“Almost every picture we took together over the years, there’s water in the background.”

There were years of their lives that they spent living overseas, living wherever Edwin’s military career dictated. Their favorite assignment was when they were stationed in Aviano, a town at the foothills of the Italian Alps, in Northern Italy. There was no base housing for this assignment. Everyone lived in the village or in farmhouses. They had no television and no phone. “I’d open my shutters in the morning to see the Alps – the Dolomites – to see what the weather was for the day.”

While Edwin’s time in the Air Force dictated where they lived, Lena found that, at times, it also dictated her career.

Growing up, she had a natural affinity for math and science. She was a voracious reader, as well. She read every single book in the children’s section of her hometown library. Once she’d read everything in that section, she got a note from her father that allowed her to read the rest of them. It’s no wonder she ended up going to college to be a teacher, a profession she loved and worked in until she was 60.

While they were living overseas, however, there were times when she wasn’t allowed to work due to restrictions put in place by the Department of Defense. They didn’t allow dependent wives from the US to work. But Lena was tenacious. She says while they were living in Italy, she would walk down to the piazza each morning where Civilian Personnel was located, telling them she wanted a job. Sometimes she went twice a day, every time being told “no.” Eventually, though, her determination paid off.

“They got tired of seeing me, and I finally got a job. I taught full-time, living in Italy.”

Educating children is something that Lena was passionate about when she was younger, and it’s a passion that remained with her throughout her life. She retired from the profession at the age of 60, but not by her preference. In 2002, she was diagnosed with cancer. It was in both of her legs. Though doctors did what they could, in the end, Lena lost both of her legs. Over six years, Lena underwent thirteen surgeries, each one leaving her bed-ridden for eight weeks at a time. Looking back, she says retiring was the right thing to do. She didn’t feel that she could do the job like she thought it needed to be done. Though she admits, it broke her heart to stop teaching.

“I still loved what I did, I still felt good, and I was fit. I had planned on working until I was 70. It didn’t work out that way.”

The tenacity that drove Lena through most of her life didn’t fail her when she lost her legs. At first, she was very dependent on Edwin, something that was a first for both of them. She was non-weight bearing and used a wheelchair. She was in and out of rehab facilities. Edwin was not only assisting Lena heavily, but he was also tackling things like grocery shopping for the first time in their lives together. TV dinners and Prego. “He took good care of me, but it wasn’t easy for him.” It wasn’t easy for Lena, either. She had always been an independent person, not afraid to carve out her path. Over their years together, if she wanted to travel somewhere and Edwin didn’t, Lena would go by herself. He loved her independent spirit.

Even after losing her legs, that spirit stayed with her.

Each day she would pack a lunch, and a van would come to pick her up from her home and take her to a rehab facility. There, she paid privately for the use of their gym and equipment to keep herself strong. After her workout, the van would pick her back up and drop her off at a local elementary school. There, she would spend the afternoon working with first graders. Lena volunteered at this particular school because it was wheelchair accessible, something she needed since she no longer had legs. Eventually, she was fitted with prosthetics, which allowed her to live far more unrestrained than she had been.

Lena remembers the relief she felt when her prosthetist told her she could drive with her new legs. “I became very independent again as soon as I found that out.”

Cleared to drive, she joined a book club in the city closest to her little town. She continued her volunteer work. She started a youth group that grew to be so popular, she had to start a waitlist for the kids that wanted to join. Lena had 33 fourth, fifth, and sixth graders at a time, giving back to their community. They would volunteer their time in homeless shelters, humane societies, hospitals, and more. Lena wanted to meet different people and didn’t want her life to be limited.

While Lena was rediscovering her independence in this new phase of her life, Edwin struggled with it. While her independence was something he had always loved and admired, this time, he seemed suspicious of where she was and upset that she wasn’t at home with him. At the time, she’d chalked it up to the idiosyncrasies of aging. He’d retired himself at the age of 60, diagnosed with MS. Though MS is a progressive disease, Edwin got along fine, for the most part, using just a cane for support. The worst of it was the fatigue it caused him, but even so, he had been able to care for Lena almost exclusively for the six years she battled cancer and through the loss of her legs. This new anxiety about where she was, was not like him.

“Now I look back at it, and it was telling that something wasn’t right. But I had no idea at the time.”

For the next few years, Edwin’s behavior and overall countenance would change so drastically that there was no way to brush it off as idiosyncrasies of aging. Lena would take on the role of Edwin’s caregiver, as he had cared for her when she lost her legs. Together, they would experience the confusion, sadness, and cruelty that dementia inflicts on families. Lena would learn how to interact with her husband in a way that she’d previously used when teaching small children. She would also come to know the significance of being an advocate, especially when Edwin’s disease progressed and he could no longer advocate for himself.

Life is made up of our stories. Our rings are what shape us. For the couple in this week’s series, they spent their lives doing things they loved. They remained each other’s support through it all. Their story reminds anyone who knows of it of the resiliency we all have inside us, no matter what life throws at us. Next week, check-in with us for more about the Michales and how Edwin’s dementia re-shaped their lives. You can read Part Two of their story here.