It was July 5th of this year and I had canceled my appointments for the day because sometimes it’s just too much. Life is too much. Being ‘on’ is too much. Sometimes I just need a few hours alone to recharge.
My dad hasn’t been well for years. Since I was in college to be exact. He’s had three strokes and a heart attack. He has a pacemaker. He’s been in construction his entire life and if my dad is anything he’s a hard worker. Years of hard physical labor and bad genes have resulted in a worn out and rundown body. Compound that with the fact that my dad loved cigarettes until after his first stroke and he still loves alcohol, red meat, butter, and bacon so he’s not a vision of health. He looks older than he is and as the years go by his frailty compounds.
My dad and I have always been close. We’ve always had a special bond and as the years have passed I’ve become the voice of reason for my dad. I’ve become his fixer, I’ve been his go to for just about everything in his life. After his third stroke his brain would not process things correctly and my dad spent a lot of his time trying to figure out what his next business venture was going to be and I ended up spending a little bit of time trying to unwind many of those business ventures for my dad.
My phone rang on July 5th and it was my dad and I can give you a million reasons and excuses, but I sent the call to voicemail. I can’t believe I’m admitting that now, but I am and I did. I put the phone down and walked away, I didn’t see his second or even his third call. I didn’t see my mom’s call either. It wasn’t until I sat down to eat my lunch that I saw my missed calls and knew almost immediately there was a problem. I skipped my dad’s voicemail and listened to the first few words of my mom’s message. Long enough to know my dad was in the hospital and he needed me.
I don’t remember much from the hours that followed, but I remember walking into my dad’s hospital room and knowing this time was different. My dad started to try to talk to me and his eyes were wild with fear. The tests started and his room became a revolving door of nurses, doctors, specialists and psychiatrists. I sat next to my dad, holding his hand and trying to help him navigate through the fog this stroke had created.
My dad was having terrifying and vivid hallucinations. He was convinced my mom worked for the CIA, he was angry that everyone had a home in Hawaii that had been kept from him. He thought my mom orchestrated my kidnapping and the fear he felt was real. He thought I was gone. He thought his wife had betrayed him. He was indignant and scared and angry and I was frantic to help him find peace.
We worked with the doctors to try to find a way to calm him down and lessen the hallucinations and delusions. I’m not trained in the medical field, my mom, my husband and my brother are not medically trained. We used all the resources we had to make the best decisions we could to help my dad in his time of need.
I sat there next to my dad as he tried to regain his grasp on reality. My mom, my husband, and I rotated shifts and listened patiently as my dad shared his version of reality. He was adamant about the business meetings he was hosting and the inventions that I’d stolen. He was convinced my mom was paying for his services by ‘servicing’ the doctors.
I sat and listened as my dad poured his heart out about where he was emotionally, how broken he felt, all of his failures, and his desire to die.
We struggled to figure out what to do next, what care to get him, and where that care would take place. Medicare, ALTCS, ALTCS pending, skilled nursing, rehabilitation. Words and terms I knew of and had a general understanding about became terms that were intimately familiar.
My mom and I met my dad after he was transported from the hospital to the first rehabilitation center. Since my dad didn’t have the financial resources necessary we were at the mercy of the state and caseworker when it came to facilities. The smell was awful, the walls were discolored and it did not help that the facility was in a rougher part of Phoenix. My dad was terrified and my mom and I had to put on a brave face.
At 67 years old my dad looked more like a child being left for the first time at overnight camp instead of the patriarch that had lead our family through good times and bad times for the first 23 years of my life. He’d lost all of the bravado that had scared my high school friends and boyfriends that had come to the house. The terror he felt was palpable.
He started with the guilt.
”I must have been pretty awful to you guys for you to want to leave me here.”
”What makes you think I deserve this?”
”I guess you guys are ok with leaving me to die.”
It escalated from guilt to anger. He had every right to feel the way he did and we stood there and took it all. He turned on the charm as the nurses came to care for him and try to make him feel at ease, but as soon as they left he’d jump right back into his tirade.
We were new to all of this and we had no guidance, no heads up, no playbook. We tried to make him laugh. We held him. We listened, nothing helped. The nurses finally came in and told us it was best for us to leave. It was not going to get easier and dad needed to try to sleep. We hugged dad and then my mom and I held each other. As we were walking away my dad had one parting thought for us, “why don’t you two pick me up a hooker on Van Buren, that way at least someone will love me before I’m murdered here.”
He always had a way with words.
That night was awful. We sat in my parents house in shock, worried sick about my dad.
The next morning we headed the 45 minutes back to the rehabilitation center. We were so naive and so optimistic about how my dad would be doing. We knew the hallucination medicine would take 5-10 days to start working. We knew we were only on day 4, but we honestly believed he’d be better.
We were wrong.
Boy, were we wrong.
We brought him clean clothes and toiletries and comforts from the house. He was quiet and his eyes were still filled with terror. I sat next to him on the bed and gently asked how the night went. He cautiously looked around and when he deemed it was safe to talk he started relaying harrowing tales about gang shoot outs and bad guys breaking into the facility. He swore he had counted 100 rounds of bullets exchanged. He was sweating as he relayed the story in a rushed whisper. As he was sharing how the nurses saved him by shoving him under the bed and seducing the gun toting bad guys his eyes caught sight of something over my mom’s shoulder.
He started to try to push himself backwards on his bed to get away from whatever it was his mind had created. I implored him to tell us what he saw, what had him so scared. He pointed at an empty space behind my mom and screeched, “that spider is so big it’s dragging a body behind it!”
Just to be clear— there was no spider. There was no shoot out. There was no body. My dad has lived through one of the scariest nights of his life and in his current state he could actually still see the bullet holes in the walls.
Later that same day I sat with him as he ate his sandwich because he refused to eat in the dining hall. He sat there shaking his sandwich in my face and swearing up and down that they NEVER gave him any food. That the staff screams at him and mistreats him. When I asked about the sandwich he was eating he looked at me and admitted maybe they were feeding him, but he was going to file a complaint. They needed to hire a trained chef to bring him his food at the temperature he wanted it presented and cook it with love.
It got worse before it ever got better. My dad would call my phone 12 times in an hour. He’d call with elaborate plans of escape. He would call to give me a play by play as he tried to steal passwords from the nurses station to get through the locked door. He called to demand I go to his job sites to check on his tools. He’d beg me to come get him. He’d call because he wanted me to explain where he was and how he got there. He’d call because he was scared.
Then I got a call from his case worker. My mom and I had been to see my dad every day. We were on his fourth day there and we were called because my dad had stolen a butter knife and threatened one of the orderlies with it. He was getting worse not better. He was pulling himself in his wheelchair up and down the halls trying to escape anytime someone came or went. The case worker told us we didn’t have a choice, my dad was a threat to himself and others and had to be on a secure unit.
We were devastated. We were headed to the facility when we got the call and they’d already moved him by the time we got there.
He was a broken man. He was angry. He was depressed. He did not understand what had happened or what he needed to do to get out. He could not comprehend what we were telling him. I’d watch as he would try to piece together the last week. We’d sit outside in the heat and watch him stare into the distance defeated and deflated.
My dad’s anxiety got worse and worse in the new unit. The doctors tried a new medication that interacted with his current medications and made his hallucinations return along with an angry side of my dad. The staff couldn’t calm him and the sudden change in personality lead everyone at the center to think my dad had suffered another stroke.
He was transported by ambulance back to the hospital and when I arrived at his room he was angry and confused and agitated. He was talking in a low mumble, but his words were nonstop. As soon as I got there he started frantically talking about jobs from years ago.
I took his hand and slowed him down. I walked through his delusion with him and soon found that his anxiety was coming from his belief that he had three past jobs operating simultaneously. I took my phone out and told my dad I’d take notes on all the work that needed to be completed and I would personally go to each site and line the guys out. He started to relax.
He was convinced the male nurse was one of the subcontractors and gave him permission to sleep on the job with my husband. He warned the nurse that my husband’s mom tried to poison my dad once with weed killer and made the nurse promise not to drink anything from my husband. (I swear, there may at one point in time been bad feelings between my parents and my husband’s parents, but there have been no attempts on anyone’s life.) He was unrelenting with his hostility and anger towards my mom and he forced her to tape his fingers in a bizarre fashion consisting of some fingers down and some straight. He was obsessed with all the beeping and hated the IV and oxygen monitors.
My dad was fully removed from his body, it was the closest I had ever been to a crazy person. Tests were run and I stood at attention to take any and all notes for my dad on the work needing to be done on the jobs that only existed in his mind.
The doctors wanted to keep my dad overnight, but they couldn’t get him calmed down. We had hoped that a move to his room in the hospital and out of the emergency department would bring him less anxiety, but it just added fuel to the fire.
The doctors took my mom and I down the hall to explain that if my dad did not start cooperating they would have to restrain him.
That’s right. My dad was so angry and so agitated that the staff wanted to tie my dad to the bed like you see in all the movies about insane asylums.
We needed a break.
We needed to regroup.
We asked the staff NOT to restrain him and to wait for next steps until we had the lab results and CT scan back.
We drove in silence back to the house and sat stunned trying to relay everything that had happened to my brother and husband. We were all so far outside of our wheel house we had no idea what to do next.
Then the doctor called my mom. The results had come in and it was not a stroke, but his new medication for anxiety had created a strong reaction and they would keep him overnight to help dilute the medication in his system. My dad was asleep and the use of restraints was not needed if they could keep him asleep through the night.
It was as if my dad knew we were at the breaking point. He slept through the night and as the medicine started to leave his system and the anti hallucination medication was able to take over again he began to calm down and was eventually moved back to the secure unit at the rehabilitation center.
Just when we started to come up for air, my dad called me on a Friday night at 8:30pm. The staff had alerted me he would be calling and that he was angry. It took 3 attempts before he could figure out how to use the their phone and when we connected he dove right in. My dad wanted to hire an attorney. He was convinced that the doctors at the facility were not crediting his work hours to his bill (he was still convinced he was in a work camp) and he had just seen a special on the TV that told him this was all a scam. He was sure that me, my mom, and my brother were not advocating for him and he had already contacted adult protective services.
These were the hardest calls, the hardest moments of that entire chapter of his life. I had put everything in my life on hold, we had explored every option, we were at his side everyday and still his mind was convinced we were not helping him. I patiently and then not so patiently walked him through his options. I explained how the state sponsored health care works and what the alternatives were if he did not want us to continue down that path. He held his ground, promising that if I did not get an attorney to his unit that night, he would find one on his own and he would sue us for everything we had.
Every time I thought we had made progress my dad would remind me where we were. The only way I was able to calm my dad down was to explain the financial repercussions if he continued the course he was threatening. I could not calm him down by assuring him and giving him examples of the amount of love we had for him. I could not calm him down with the medical facts about what had happened to him. I was money that eventually settled him down.
I know that it was not my dad during that time of his life, but it felt like my dad continued to find ways to kick me while I was down. It felt like we were not hurting as much as he was and he was desperate to make everyone hurt the same or more than he was hurting.
I do know that was not the case, but exhausted, overworked, worried and scared was not the best mindset to be in for the angry calls from my dad.
My dad was in the secure unit of the rehabilitation center for over two months. His hallucinations did eventually subside, but he was left with a strange memory of every hallucination and still asks for us to help him clarify what was real and what was created in his mind.
During one of my visits my dad and I were talking and he took a long pause. He looked at me and said, “Stef, I feel like I’ve been here for a lifetime.”
I held his hand and replied, “Dad, what you’ve been through in the last month and a half is more than most people experience in a lifetime.”
”Would you tell me about it?”
”Dad, do you want me to talk to you about your hallucinations?”
After a long pause, he nodded his head.
We spent the next hour talking through what I remembered from the last month. I told him about the shootouts, the job sites, the bad guys, the labor camps, the fear and the anger. He sat and listened, occasionally interrupted to share his memory of that event or to try to clarify what he thought was happening during a certain event. I told him how hard his calls were and how helpless I felt. I told him I knew why he was angry, but that his sharpness and lack of gratitude was really hard some days. I cried as I told him about his escape attempts and his panicked calls about jobs long ago.
My tears were too much for him.
He started to cry and asked me to bring him back to his room. He dismissed me as he often did during that time, not because he was angry, but because it was all too much and niceties and a social norms were inconvenient when you are hanging over a cliff by your fingernails.
Dad is now in a long term facility. He still has not fully grasped what happened to him. He is convinced he never had any strokes and this is all a ploy against him. He is in pain. His body continues to fail him and he is stuck in this purgatory in which his home is no longer his home, but he does not want the care facility to be his home either. He is lonely, but is overwhelmed with company. He is a kinder dad than he has been in the past. His texts are sweeter and he has more patience with me in person and over the phone.
What happens from here, I don’t know.
I did finally listen to my dad’s voicemails from July 5th. If you want to know guilt, I’ll let you listen to them. He was scared and begging me to help him. What kind of daughter doesn’t answer her dad’s call? What kind of daughter doesn’t answer her dad’s calls when he is having a stroke and terrified asking for someone to help him? That is something I may never get over.
I do know that the worst thing I do to myself is judge myself on my dad’s good days. I doubt every decision we made when he is having a good day. When I give him a kiss and a hug and leave him with his table mates to eat his dinner on a tray it breaks my heart into a million pieces. I run a million scenarios in which we can move him home and he can function again in society, but then I see him on a bad day and I know we made the right choice.