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.

Caregiver Burnout Prevention

The first step to being an awesome caregiver is caring for yourself. 

Caregivers sometimes feel overwhelmed with the responsibility of caring for their loved ones. They’re often providing support for someone else’s needs without recharging between tasks. This can lead to the feeling of being overworked and overwhelmed physically and emotionally—commonly known as burnout.

Caregiver burnout is a term that refers to the physical, emotional, and mental exhaustion experienced by stressed caregivers. It can lead to symptoms like depression or anxiety which make it difficult for them to provide quality care for their loved ones. Fortunately, there are ways to help prevent this from happening. Keep reading to find out how!

Signs of caregiver burnout

As a caregiver, you may focus on your loved one and overlook the toll that stress can take. It’s important to watch for signs of burnout.

  • Trouble sleeping too little or too much
  • Exhaustion that makes daily tasks difficult
  • Feelings of dread, guilt, being overwhelmed, or anxiousness
  • Easily agitated
  • Physical symptoms—headaches, stomach aches, getting sick more often, changes in weight
  • Withdrawing from people or hobbies you enjoy
  • Feeling disconnected from reality or that caregiving is taking over your life

Still unsure if you are experiencing burnout? Try this caregiver assessment from the American Medical Association.

Causes of caregiver burnout

Burnout is often the result of neglecting physical, emotional, and mental needs, but the following issues can also contribute.

  • Conflicting roles: When you become a caregiver, it can be difficult to separate your role as caregiver from other important relationships such as a parent, spouse, friend, or co-worker. You may find yourself neglecting other important relationships or letting them come second.
  • Unrealistic expectations: Caregivers often expect their care to have a positive impact on their loved one’s health, but this is not always realistic—especially for patients suffering from progressive diseases such as Parkinson’s or Alzheimer’s. Caregivers are also often overburdened—either by the expectations they’ve placed on themselves or by family members who demand more of them than they can handle. If you have an elderly loved one who needs memory care in Albuquerque, our specialized CARE programs can help.
  • Lack of control: Many caregivers find themselves frustrated by a lack of money, resources, and skills to effectively care for their loved one. It can also be overwhelming to feel like you had no choice in caregiving or that you have no privacy due to the time it takes to care for your loved one.

Preventing caregiver burnout

Caregiving is an important role that can come with the highest emotional and physical demands. It’s crucial to take care of yourself in order for you to be able to provide quality assistance when providing loved ones care. Now that you know what signs and causes to watch out for, here are some burnout prevention tips! 

Have realistic expectations and goals

Caring for a loved one can be an overwhelming experience. That’s why it is important to set realistic expectations, create daily routines, break down large goals into small tasks, or even just say no when requests feel like too much! Allow yourself to take breaks from caregiving, and share responsibilities with other family members. A Place At Home offers in-home care services 24/7 or even a few hours a day that can help share the load.

Accept negative feelings as a normal part of caregiving—it doesn’t mean that you’re a bad person or that your loved one needs more care, but rather it is a result of your overwhelming role. It’s normal to feel guilty at times, but know that no one is a perfect caregiver. You’re doing your best with what information and knowledge you have—even when things don’t go exactly as planned!

Support network

Create a support network for yourself consisting of family, friends, and your community. Communicate with family and friends about your loved one’s health and situation. Join a support group online or in your community with others who face the same challenges as you. Find resources for caregivers in your area such as transportation, food delivery, or housekeeping. A Place At Home offers in-home care for seniors in Albuquerque that can help make life easier.

Take time to build positive relationships outside of caregiving, especially with those who offer nonjudgmental emotional support. Create a time each week to do this, even if it is just a phone call with a friend!

Stay healthy

Don’t neglect your own health while caring for someone else. Set personal health goals and routines, and achieve them. Get plenty of sleep, drink water, exercise frequently, and eat a healthy diet. Remember to set your own doctor’s appointments and screenings. Talk to professionals—such as doctors, therapists, or social workers trained to counsel people in mental and emotional issues. 

Caregiving can be rewarding yet overwhelming, but you are not alone. A Place At Home offers compassionate senior-focused care. Whether you need daily in-home companion care, assistance navigating with health care options, or help finding a senior living alternative, our professional caregivers in Albuquerque can help. 

Schedule a free consultation today! You can expect an immediate response from our staff about any questions you may have.

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.