Our Horrible Journey

It was a terrible, horrific, awful time.  I don’t know how we lived through it and I NEVER want to go through anything like it again.  God had to have been there giving me strength.  I could not have survived it if He didn’t.  Here’s what happened…
On the morning of September 8th, Ted (my 61-year-old husband who had been diagnosed with early onset Lewy Body Dementia in 2012), Casey (our 19-year-old son) and I were scheduled to head for Nashville on the first leg of our journey to take Casey to Georgia for his first year of college. Although I had scheduled the day off, my boss requested that I come in to work on an unexpected project that needed to be completed quickly.  I was rushing to get to work, but had to stop short when Ted—who had just awoke– began to accuse me of being a prostitute  who had spent the night with him in order to steal his money.  After a 15 minute, full-blown rant, he finally realized he was hallucinating and asked me to forgive him.  I wasn’t mad—I was shocked.  This had never happened before, and if I hadn’t been so frantic to leave, I would have realized that the rush of getting ready was having a terrible effect on him.  Something had changed in his mind and the dementia had progressed.  We didn’t know we were about to start a horrible journey together.
The project took longer than I expected, and when I returned home, we were over 2 hours behind schedule.  While packing up the car, I could feel the tension in the air escalating.  Additionally, on top of everything else, I discovered that in his confusion earlier that week, Ted had erroneously thrown out some of Casey’s personal items that he hoped to take to college.  It was a mess.  Ted was distraught and embarrassed, Casey was hurt and angry and I was stressed and overwhelmed.  It’s a miracle we actually made it on the road.
`               After stopping to pick up my Mom, we arrived in Nashville at 1:00 a.m.  Everyone was exhausted.  We checked into our hotel and immediately went to bed.  The next morning, Ted was a different man.  A normally calm and laid-back guy, he was now angry, distrusting of me and sexually aggressive.  Since we were sharing a room with Casey—and not wanting him to see his father in this mood–I tried to diffuse the situation with jokes and light-hearted conversation.  It seemed to work and we soon joined my Mom in the hotel lobby for breakfast.  By 10:30 a.m. we were on the road to Savannah.  We thought it would be best to have Ted sit in the back seat of the minivan so that he could rest/sleep easily.  Little did we know, that was going to be a huge mistake.  About 20 miles outside of Savannah, Ted’s hallucinations hit full force.  He began accusing us of kidnapping him with the intent to do him harm.  He called my Mom a bitch and accused her of being the leader of our “cult.”  We could not calm him down.  The hallucinations escalated, he started yelling for help and began to beat the car’s windows with his hands and feet in an effort to break free.  We didn’t know what to do.  If we stopped the car, he might get out and make a run for it into traffic.  We determined the best thing to do was to get to the home we were renting and try to get him to rest.
By the time we arrived at the home 10 minutes later, he was fully enmeshed in his hallucinations.  Casey suggested we try to get him into the home’s garage quickly before his yelling disturbed the neighbors.  We held Ted by his arms and forcefully pulled him into the structure.  He struggled and yelled violently.  Once in the garage, he did break free, grabbed a bicycle pump that was lying on the floor, turned and smashed Casey in the head.  We couldn’t believe it.  It must have been by virtue of adrenaline, because Casey was able to shake it off and help me get Ted to sit in a chair that was in the garage.  Ted fought us terribly and kept screaming for the police.  I told Casey the best move might be to have the police come so that Ted could see we were not trying to hold him hostage.  When Casey left us to find the home phone, Ted saw his chance because I was now alone with him.  He lunged.  I was able to dodge the three punches he threw at me while begging him to come back to his right mind.  In the other room, Casey–hearing my pleading–rushed back to the garage to protect me.  Between the two of us, we were able to get Ted back in the chair and hold him down until the police came.
When the police and ambulance arrived, Ted seemed relieved, but the agitation and violent behavior remained.  He told the officers we were all monsters who wanted to kill him.  I was specifically pointed out as being the main vampire.  Very shortly thereafter (and to our relief), he was placed in the ambulance and taken to the emergency room.  Not wanting Casey to see any more of this, I asked my Mom to stay with him and I got in the front seat of the ambulance.  Ted screamed and fought the paramedics who were trying to take his vitals all the way to the hospital and for a long while after we entered the ER.  I sat in the front seat, looked out at the passing street lights and felt my body shaking.  It felt like I had been through a war.
Ted was so angry.  Everyone in the ER watched as the doctors tried to calm him down and keep him quiet.  Finally, they gave him meds to subdue him, but I think in their frustration, they administered too high a dosage.  Ted was out for the next 12 hours.  I slept in a metal, folding chair next to his bedside wrapped in sheets I found in the ER cabinets.
The next morning, after he woke, Ted was confused as to where he was, but he still believed we were holding him against his will and wanted to do him harm.  A medical resident entered the room and let us know that they normally release dementia patients after they had become stable, but since we were from out of town, they would try to find us a bed so that they could watch him further.  Unfortunately, there were no more beds available in the senior care facility, so we would have to wait.  I left the room to get some water and to take a breath.  When I returned, Ted was standing next to the bed holding the blood pressure monitor in his hand like a weapon.  He turned and looked at me with such hatred, I instinctively knew I had to show him I was not a threat.  I slowly crossed the room to my metal chair and sat down.  Ted came over to me and accused me again of planning to hurt him and steal his money.  “What money?” I thought.  We had to borrow the money to make this insane trip.  Just at that moment, a young nurse came into the room to tell us Ted’s room was ready.  Ted turned towards her and in a menacing voice called her a bitch and asked her “who the hell did she think she was coming into his room without permission?”  He yelled for her to get the “f” out.  We had been married for over 31 years.  I had never heard Ted say anything like that.  Ever.  He hardly ever raised his voice.  Sometimes, I couldn’t even tell when he was angry.  Now this.  Jesus, help me.
I was able to calm Ted down slightly by showing him I wasn’t afraid of him and letting him know that the way he was acting was starting to piss me off.    Maybe the frustration in my voice got his attention.  I don’t know.  When the nurse finally came back, though, to show us the way to his bed in senior care, Ted agreed to follow us, saying “I’ll give you this one thing, but don’t push me anymore.”  At that moment, I wanted to push him—right out the door.   We followed the nurse through the halls of the hospital, and when we passed through the doors of the senior care facility, Ted’s nightmare really began.
The senior care unit was one where you had to be buzzed in and out of two big, wooden doors.  You could not leave or enter without a staff member using their ID to swipe over a barcode by the entrance.  The day was September 9th.   Ted did not leave the unit until September 20th.
During that time, he would eat, meet with the doctor and medical students, sleep and fight with the staff to allow him to leave the floor.  During one manic event, he even tried to push one nurse’s heavy cart through the door of the unit.  He also grabbed another nurse’s ID badge that was hanging on a cord around her neck and tried to forcibly remove it from her throat.  It was terrible.  Since driving back home was not a possibility, it was decided by the medical personnel, Ted’s case manager and social worker that they would not release Ted until they could arrange for a hospital plane to take him home.    Unfortunately, this would cost over $16,000—which we did not have.  Many days would pass while a volunteer tried to find either an institution or charitable donor who would kindly pay for the trip.  All the while, between his hallucinations, Ted kept saying he just wanted to go home.  Please, just take him home.  I started to imagine he was ET and all I would need was a bicycle and a hoodie.  No such luck.
We had some earlier financial problems which caused us to have to borrow the money to take Casey to his new school.  We were now over one week passed our deadline to return home and there was no end in sight.  Casey’s girlfriend had broken up with him just before going off to college, and not wanting that AND the memory of his father having to be put into a hospital to be what Casey remembered for the beginning of his college days, I kept him away from the hospital.  I went back and forth to school orientation activities and the hospital—compartmentalizing my days.  My Mom went home by bus because the whole experience scared her beyond belief.   When I left her to return to the hospital, I broke down, devastated.  Yep, I was alone.  I moved out of the hotel and into a hospital respite room (a small room containing a couch and a lamp) and turned in the rental car to save money.  Our credit cards were maxed out.  Our family sent us what help they could, but we’ve never had lots of money.  There wasn’t much they could send.  And we still couldn’t go home.  I began to hate Savannah.
Ted would calm down whenever I was at the hospital, so the hospital staff was always happy to see me.  My days extended there long before and past visiting hours.  I would give him showers, brush his teeth, bring clean clothes and make sure he ate his food.  I worked with the case manager, social worker and volunteer to think of ideas to get us home.  I called institutions to see if they could donate services.  I was constantly on the phone to set up adult day center admission for Ted to use when we finally returned home and I had to go back to work.  And, in between, I tried to help Ted understand where he was, why he was there and what was real and not a hallucination.  Later after leaving Ted, and though you weren’t supposed to bring food to the respite room, I would sneak in sandwiches at night and watch movies on my phone before falling asleep to escape my reality.  You had to be out of the respite room by 9:00 a.m. every morning so I would go directly to Ted to make sure he ate breakfast.  I would stay with Ted until almost 6 every evening and then do it all over again the next day.  The days started to run into each other.
One Friday morning, the 19th, Ted had been in the hospital for 10 days.  When I arrived at the senior care unit, the doctor and medical staff were writing out instructions for me to use while they were gone for the weekend.  I knew this meant that nothing was going to happen to get us home until possibly the following Monday—if then.  Something screamed inside of me “NO MORE.”  I went to Ted’s room, immediately called his brother and pleaded with him to get us on the next commercial flight to Chicago.  I would get Ted home all by myself—without any medical personnel.  It cost him almost $1500, but he got us tickets.  I then went into the social worker’s office and told her that “we were out of there.”  I’m sure she was happy to hear it, because if we left against their medical advice, they were not legally responsible if Ted acted up on the plane.  I didn’t care.  All I asked of them was to give me some medication I could use if I needed to sedate him.  And, if they could, please say a prayer for us.
The next morning, I said goodbye to Casey and came to pick up Ted to take him to the airport.  The hospital weekend staff tried to help me pack up his belongings and get him into the car I was using to get us there.  Ted was still a little confused, but more lucid than he had been the entire time he was in the unit.  I think he knew this was his shot to escape.  When we finally got outside, he marveled at how blue the sky looked and how good the air felt.  He really did believe he was in prison and now he was free.  He said, “Let’s get out of here.”  I said, “Damn straight!” and we were off.
At the airport, I requested a wheelchair for Ted and checked our luggage—not wanting to be encumbered with anything just in case Ted became agitated.  To his credit, he only became angry when he believed that the airport staff member who helped him with the wheelchair was making a pass at me.  The worker had only touched my arm when he wished us a safe flight, but to Ted it was an inappropriate breach.  I told him he was not being nice and to cut it out, and he slowly calmed down.
The wait for the flight to take off was filled with anxiety.  I kept watching to see if Ted was going to become violent or delusional.  Through God’s grace, he did not.  When we got on the plane, he sat next to me, grabbed my hand and looked out the window until take-off.  Once that plane left the runway, I thanked God, and did so again when we landed.  Before leaving the plane, I sent a joint text to all our family and friends to let them know we were back in Chicago, and got back a combined “hallelujah!”  Chicago never looked so good to me.  Ted wanted to jump for joy.  I knew the feeling.
The next week, feeling safely home, Ted and I sent thank you notes to everyone who helped us—grateful that they were in our lives.  I still cannot think of Savannah without getting a sick feeling in my stomach, which is sad to us because we were hoping to retire there.  Ted believes I’m suffering from PTSD.  He could be right.  It was a long, horrible journey for us, but we came out on the other side.

Katheryn Edwards

Mar 10, 2016