Thursday, May 14, 2015

Beyond reason

You may wonder what it is like to be around someone who cannot be reasoned with who has been diagnosed with Alzheimer’s. It is really bizarre to see someone you know very well change moods so quickly and not be able to reason, or use common sense. Sometimes what is very normal to them makes no sense to us.

There was a weekend at my parent’s home that I will never forget. My Mom had called me in the middle of the week telling me how difficult Dad had been. She said she was not able to reason with him like she had previously. She was getting worried and scared at times. I told my wife when I hung up the phone that my Mom sounded very different on this phone call. It was hard to believe it could be that bad. I figured she was just tired and needed a break. I let my wife know that I was going to spend the weekend with them to give Mom a break, hoping that it would let her recharge and continue to care for Dad.

I arrived Friday night and everything went well. We had dinner, visited, and Dad went to bed and got a good night of sleep. Saturday morning we ate breakfast, and then Mom went shopping. I needed to rotate the tires on my vehicle and that is something that Dad loved to help me do. I knew it would keep him busy and focused on something positive. Initially, he did better than I had expected. He showed me the tools and we jacked up the vehicle. We were rotating two wheels at a time. Dad would trade with me when I got a wheel off. Once I got the wheel on, I would let him put the lug nuts on and tighten them. What I realized is that he could not remember what direction to tighten the lug nuts. I had to delicately help him finish and he was glad for the help. It wasn't just one wheel, but rather all of them. This took us all morning.

We got in his Jeep and went out for lunch. The whole time I was driving he talked about how much fun he was having and how beautiful the weather was for a Jeep ride. It was perfect weather! We were having so much fun; it was like we were dreaming.  Alzheimer’s seemed to be gone for the moment.   He said he could cruise all day.

We ate lunch and continued to have great conversation. He looked at me and said, “Your Mom puts up with a lot from me. I don’t know what I would do without her.” I told him she was happy to do it. Then, he said the one thing he would like to do is to drive the Jeep again. I asked him, “Are you feeling good today?” He said he was and it seemed like he was doing well. I told him we could go to the high school parking lot and I would let him drive. He lit up and was ready to go. I also let him know that I was not going to tell Mom.

We drove about 15 minutes to get to the school. It was starting to get really warm. I stopped in the middle of the parking lot and asked him if he was ready. He said, “Ready for what?” I said, “Do you still want to drive?” He said yes, so I got out and walked around to the passenger side, but he was still sitting there. He asked what we were doing. I asked again if he wanted to drive. He got out and by the time he got to the back of the Jeep he forgot again. I could tell this wasn't going to work. I let him know that I needed to go to the bathroom and he agreed that we should go home.

He was incredibly quiet the entire ride home. We parked by the barn and as soon as I shut off the engine he reached for the keys and said, “This is MY Jeep and no one should forget it. I can drive when I want.” I smiled and said, “You are right. You can drive anytime.” We got out and he came around and got in the driver’s seat and just sat there with the key in his hand. He wanted to drive, but could not figure out what to do. He got out and acted incredibly mad. I went in the house and went to the bathroom. He came inside and was pacing around like he was angry. I suggested we get something to drink, but he refused. He insisted on going back outside. It was getting up to 100 degrees that day. I didn't know what else to do.  couldn't reason with him. 

He made a comment about never getting to go out in the Jeep. I asked if he wanted to go for a ride to cool off and he agreed. We took off again and he remained very quiet. We got just two miles down the road and he quickly said, “Pull over there.” It was too late for me to turn, so I went to the next turn. We got turned around and back to the stop sign when he told me in his very angry voice, “When I tell you to turn around you better do it!” I calmly said, “Okay, what would you like to do?” He said, “Take me home NOW.”

We started back home and he became very fidgety and proceeded to tell me that if I didn't get him home quick he was going to go crazy. I was very worried that if he got his seat belt undone  he might try to jump out. Luckily, we only needed to go 30 mph the entire way back home. On the way back he told me to drop him off at the driveway. Then, when we got there he pointed and told me to park at the barn. I shut off the engine and he said, “This is MY Jeep and don’t forget it.” He was absolutely furious. We got out and just wandered around. 

couldn't tell what he was going to say, or do. He noticed all of the mole holes in the yard and decided to get his machete and proceeded to stab the ground to get the moles. The whole time he was acting very angry. I kept my distance and tried to redirect him.   Again, I could not reason with him.

At this point I didn't know what to do, so I texted Mom and asked how soon she could come back, hoping that she could calm him down. She came back within thirty minutes. During that time I remembered that he liked to show off his knife collection. He could do this all day, every day! He agreed, and by the time Mom got there we were at the table looking at the knives and he had been telling me stories about each one. We finished that and put everything away. Then, all of a sudden he looked at Mom and said something about not letting him drive his Jeep. She calmly let him know that he had not had his license for six months (he chose to give up driving). He blew up and yelled, “Thanks for telling me that now!” He was red in the face, his eyes were huge, and he was yelling at a very close distance to Mom. I stayed close in the background to see what he would do with me there. He didn't seem to notice me. He continued yelling at her that she should just sell his Jeep if she won’t let him enjoy it. She let him know that it was his Jeep and she was not selling it. He glared at her and said, “That’s just great!” and stormed out of the house.  We were struggling to try, but neither of us could reason with him.  How can you convince someone of something when they cannot remember the truth, and their brain is telling them something different?  For someone with Alzheimer's the answer can't.

It was only about 1:30 in the afternoon when he stormed out and he remained outside in the extreme heat for the rest of the day, primarily cutting every tree branch he could reach. Then he would take the little branches and hold them next to a tree and cut them into little pieces with the machete. This made no sense and I was afraid he was going to cut his hand. When he wasn't cutting branches he was in the barn holding his head, then every so often he would throw something like he was mad. I went out to offer him some water and asked if his head hurt. He said no. He also got the weed eater working and started going around inside the barn using it. The barn has concrete floors, multiple gas cans, and other stuff, so we feared for his safety. 
Again, I could not reason with him.  He did not understand what he was doing.

Mom called a couple of doctors to see what we could do to calm him down. Nothing was working. They basically said he was at a point where his medications were ineffective and he would need to be admitted to the hospital to try to get the medications balanced.  If the medications could not be balanced, she was told we had reached the point of placing him in a memory care facility. We had a hard time believing this until three other experienced health care professionals told us the same thing.

My Mom was told by a nurse at the neurologist’s office to call the police to report that he was out of control and they would handle it and get him transported to a hospital. My Mom quickly reminded them that he has Alzheimer’s and she could not take a chance on the police using force if our dad was unreasonable.

We were finally able to get an ambulance to arrive late in the day to get him to a hospital to work on finding a balance of medicines that would hopefully help him. My brother-in-law showed up, in advance, to try to help reason with Dad. When he showed up Dad seemed happy to see him and calmed down a little.

When the medical personnel showed up, Dad was a completely different person. He joked with them and asked what he could do to help. He could change for short periods of time for different people. I let him know that we were concerned about his health and safety and we really wanted him to get checked out. He completely agreed to do whatever was needed. It was shocking to me that he was a completely different person again. I had been worked up for so long that day that when the medics pulled me aside to ask questions I fell completely apart. They realized that Dad was unpredictable and not himself.

Dad’s medications were changed over a two week period and he was able to come back home. We were advised that he would not get better and we really needed to consider getting him into a facility sooner rather than later for everyone’s safety, and so Dad could adjust easier. We found out soon after that they were correct. Dad was too irrational and unpredictable. We were not at all prepared for that day or how fast he was going downhill at the time. 

For those who get this diagnosis it is a great idea to think ahead for the worst possible scenarios so when the time comes you can be better prepared on how to handle the situation and take the best action for that person, if necessary. This disease is unpredictable, so it is important to know all of your available options before you need to make a decision. 


Tuesday, May 5, 2015

Decision to place, moving in, and beyond

The decision to place my dad in care was beyond difficult for me. I knew that we could no longer care for him on our own, but I felt that no one could do a better job than us. It felt like a no-win situation.  We had been at the hospital for the second time and I had an experience with my dad that I had never had before. He had been in quite a rage, telling me that my mom had another man. I reassured him that this was not true, but it was the Alzheimer's Disease making him believe this.  He and I had a very trusting relationship. I kept assuring him that I would not take her side if this was true, and I would tell him the truth. He just kept stewing.

The doctors had asked my mom to stay in the waiting room. After more time had passed, we asked if he would talk with my mom and he agreed. She reassured him that she had loved him, and only him, for nearly 50 years.  He drifted off to sleep shortly after she entered the room.

He was only asleep for about 10 minutes when he opened his eyes and his whole demeanor changed.  He truly looked different in the eyes.  He seemed dazed and confused, asking where he was and what had happened because he did not feel well.  We told him that he had been very upset, outside too long in the heat while working in the yard, and would not come inside to rest and take his medication.  We shared that we were worried about his health and brought him to the hospital to try to work on his medications.  He asked my mom if she was going to stay with him at the hospital.  Suddenly, he was not mad at her at all, and there was no talk of an affair, or another man. He looked at my mom and tenderly said, "Will you stay here with me?" She kissed him on the forehead and said that she would. Then, he said something that broke my heart and sent chills through my bones. He said, "Okay, I'll be a good boy."  He drifted off to sleep and my mom and I sat and cried.

I knew the disease had such a grip on him.  This was all completely beyond his control. Everything felt out of control. There was no magic pill to make him better.  We were starting to lose him for chunks of time...chunks that I knew were only going to grow.

During this hospital stay, we decided that Sunrise of Lenexa was the best option for him, and for the safety of my mom.  It was very much a homelike setting, and it was beautiful.  I was still hopeful that eventually this rage part of the disease would end so we could get him back home with some home healthcare. Unfortunately, this never became an option.  I was thankful that my sister, Kerry, had already visited several facilities while she was in town a few weeks earlier. I was such an emotional wreck that I really could not bring myself to visit these facilities.  I was also holding onto hope that we could just bring him home, and I did not want my kids to know just yet that we were heading down this road.  They were used to seeing grandpa nearly every day, and this would be a difficult change for them, as well.  

I remember asking a friend from church if we could use his truck so we could get the room at Sunrise all set up before dad arrived.  We chose items that were special to Dad to decorate his room...mostly items from his Navy days, as well as family pictures.  I wanted the room to look as good as possible before he arrived.  I don't remember his arrival at Sunrise, but I do remember telling him that this was where the doctor recommended that he stay until we could get his medication regulated better.

For many, many weeks or maybe even months, I cried every time I left him.  I felt guilty for leaving him there and so sad because every time I visited I could see more of a decline in his health and cognitive function. We were happy with this location, and he stayed until he needed a much higher level of care.  We had built great relationships with the workers at Sunrise, but we knew that we had to move him.  We all cried on moving day...including several workers. We found another location that was similar, but we knew that ultimately we wanted him in a particular facility where they have a men's-only unit, and they are specially trained in working with men with behavioral challenges as a result of Alzheimer's Disease.  

Dad was in the interim facility for about three weeks when we received a call that there was an opening where we really wanted him to be placed.  We quickly moved him.  This place was no-frills, but we were confident that the care would be excellent, his needs would be met, and there were nurses and a doctor on site at all times. We were nervous about transporting him ourselves, but in the end it was successful.  I opened my van door and helped him out.  He grabbed my arm and I led him into his new home.  He was so helpless at this point.  It was another extremely difficult and sad day for me.  I was hoping and praying that we were doing the right thing for him.  We visit regularly.  My mom is there nearly every day and has been since his first placement.  I've been able to visit sometimes weekly, but sometimes bi-weekly. For a brief time when he was declining severely, I had some stretches that I only visited about once every three weeks. I felt that I could not emotionally handle more than that at the time.  I have had many people express their lament and sadness of not being able to handle seeing dad anymore, and I can easily assure them that I completely understand.  It is so hard to see him this way.

We have only seen my dad receiving the best of care and being treated with respect. I am incredibly thankful for the many workers that God has placed in our lives!