Sunday, June 14, 2009

The 36 Hour Day

Ty's father has Alzheimer's. He was diagnosed a couple of years ago. Because of this, she has been reading a book titled "The 36 Hour Day". Until yesterday I did not really understand the title of the book and even though I opined that Alzheimer's is the cruelest of all diseases, I had not had any up close and personal experience with it to see just how much it can impact a family. We travelled back to Ty's home yesterday to spend a day with her mother and father. Now the things I thought I understood I now really know because I have experienced them first hand. And, things I thought I knew are being brought into question- like what are we really? If our brain betrays us, what is left?

When we arrived in Springfield, Ty's father was asleep. This was about 5:00 in the evening. Not all that unusual. But, what was unusual was that he did not even get up to greet us. He acknowledged we were there. Said a "hello" and promptly went right back to sleep. That was the first sign that the man I had just seen six months ago was no longer with us. A couple of hours later he got up. We were all sitting outside on the back porch and he came out what I thought was completely disoriented. I later found out that this was not nearly as disoriented as one can be. He said he woke up confused about where he was and he kept thinking that he needed to go home. At least he recognized that he was at home, even though he didn't feel at home. He was surprised to see his cars there (he owns four vehicles). Then, I saw the for the first time the "awake dreaming" (my term) that I had heard described. He launched into an elaborate story that went on for about an hour about how he had sold one of the vehicles, been given a sack of money for it, etc. etc. There were police involved, several unauthorized trips to Texas by his two sons in his Trail Blazer (the ones who had taken the keys and his guns in reality), there were dive teams, old colleagues from 20 years ago. I felt like I could almost see the gears in his brain turning as the confused mish-mash of recent reality, long ago reality and total fantasy were being blended on the spot into a story that he told with great sincerity. He paused a couple of times to ask if we minded listening to his story. We said we did not and he continued. This, which I thought was the worst of his condition turned out to be an extremely mild episode

After retiring around 10 PM, he was up at midnight opening and closing the back door, expecting visitors to arrive. They had been in a shoot out with the state troopers. His eldest two sons were among the visitors and they were cold and hungry. There was some talk about "The Lord Jesus Christ" who I found out communicates directly with him via telephone and sometimes telepathically. But, again, this was fairly mild compared to what would begin about 5:30AM and go on for the remainder of the day. He calmed down after an hour or so and went back to bed.

At 5:30 AM, he was up again, this time going through closets looking for clothing for the men who would be arriving shortly. He wanted a meal prepared for them. He told us to move away from the doors and the windows because a .38 bullet would come right through the walls. He demanded that we lay down on the floor for our own safety. He tried to get the children to go to the basement. This was an almost total break from reality. I say almost because through all of this, he continues to recognize us, to know where he is (kind of- he did forget where the bathroom was for a moment the evening before and we had to direct him). But, he thought he had only been retired for a week or two when it's been 12 years. He continues to know how old he is. He can count money. Some things function just the way they should.

Normally, I've been told, these episodes last an hour or so and he goes to sleep and calms down. Yesterday, while I gave Ty and her mother a break to go out and get some things done, I found myself alone with him and he demanded I recite how much I believe in "Great God and Little Jesus". He would give me lines to say like "I believe in Big God and Little Jesus, Amen.". I had to say this over and over. He licked his hand and anointed my forehead. He spoke to Great God and Little Jesus audibly and they would answer him. He asked permission for just about everything he was about to do and they would tell him whether it was OK or not. They had given him the power to put hexes on people as long as he told them the truth was faithful to them. He put several hexes on each of us during the day. He thought he had the power to stop anyone "in their tracks". Anytime we would contradict him or not jump to do what he said, we were questioning not him, but we were denying our belief in God and subject to God's judgment through him. He has become fascinated with standing right by the road. They live on a blind curve and he stands right at the end of the driveway to wait for the men to come. I tried to reason with him to at least wait a few feet back from the road. But, he said God had told him to stand right in that exact spot. He told me that God had told him that he could stand in the middle of the road if he wanted to and the cars would not hurt him. This is when I first began to fear for his safety. I would later learn that when I heard the term he had been "on the road" from Ty's family that it was literally on the road. I thought that he had been walking along the road. But, he was standing in the middle of the road thinking cars could not harm him. I put my arm around him to escort him back and few feet and he put down the Pepsi he had demanded I buy him and pulled back his fist to hit me. I've never been punched before. I don't know what it feels like. But, I was certain at that moment I was about to find out because I could not leave him standing beside the road and I could not strike first. Finally, he heard from God that it was OK to move away from the road and came back to the house with me. This was the first of many trips to the side of the road that day though.

We decided to leave a little earlier than originally planned because he remained agitated through the day. We thought our presence there might have been a trigger and we did not want the girls to see too much. Sometimes his fantasies go from violent to vulgar (so I've heard. I was spared that experience). Ty and her older brother spent the day trying to figure out insurance benefits, talking to admissions people at nursing homes, trying to figure out how to save some of the family's assets which would quickly be eaten up by nursing home expeneses, etc. The plan was to take him to the hospital that evening where he would be monitored while he was sleeping (since he roams so much at night). But, we all agreed at that point that it was beyond leaving Ty's mother alone with him anymore. She is petrified of him, with good reason.

Afer we left, things got worse. What had been mere allusions to violence in the past turned into reality. Tim, had originally planned to come down for just an hour. That turned into the whole day that then turned into overnight. Tim has been driving back and forth (45 minutes each way) several times a week. Wesley had just returned from a week at his first overnight camp and Tim was looking forward to spending the day with his only son. Instead, he came to Springfield for a meeting with potential caregiver, ended up stuck there for the day because he had to accompany Ty's father to the sleep study since no one believed he'd get in the car with Ty's mother. He resents the fact that she can drive and he can't. Tim decided to cut their lot while he was there (about an acre total) and Ty's father decided he did not want Tim on the lawnmower. So, he began throwing rocks at Tim.

Here's where we get into my rant about the health care system. The local sheriff and the local police will not come out to deal with an Alzheimer's patient whether he's making threats, standing in the middle of the road or actually throwing rocks. They had to call the state police to come out to deal with him throwing rocks. The state police did come out, take a report and forced him to get in the car with Tim to go to Eastern State Mental Hospital, in Lexington two counties over from Washington County where they live. Tim has medical power of attorney and made the 45 minute drive with his father to check him in now for his own protection as well as the protection of others. We got news of this as we were driving back up I-75 to Cincinnati. There, of course, was a great deal of sadness. But, also a sense of relief as we now knew where he would be spending the night and that Ty's mother would be safe. Unfortunately, what we thought we knew, we didn't really know.

The mental hospital, with the word "state" in its title doesn't "really" (don't know why they used that word) service Washington County. They would not admit Ty's father based on Tim's authority- even with the power of attorney. They asked him if he wanted to sign himself in. He, of course, refused. So, Tim was now on his way back with his father after wasting all the time to drive him to Lexington on the recommendation of the state police. When he got back home, Ty's father was more agitated than ever. He found everything he could and began trying to hurt Tim and Ty's mother. He picked up a chain and began swinging it. By this time we had been on the telephone with the Alzheimer's Associations and learned that instead of calling the police, for an Alzheimer's patient you should call the paramedics who are required to at least take a person who is making threats to the hospital for assessment. The paramedics came out. First one bus, then two. Four men could not get Ty's father to cooperate, so the police were called again (this time I'm not sure if it was local or state). The police were able to convince him to either get into the ambulance by telling him he was going either in the ambulance or the police car. When we went to bed at 11:30 last night, Tim, his mother and his father were sitting in the waiting room at the hospital again (the second time in the last month) waiting to see if he would be admitted.

Wow! That was a lot in a day. And, I didn't chronicle half of what happened. I now have an inkling of what Ty's mother has been suffering through. Just the time I was left alone with Ty's father, I found myself talking in whispers on the phone, sneaking off into another room to leave him to his conversations with Great God and Little Jesus, afraid of answering a question the wrong way and setting him off. I can only imagine the stress she's been under being awakend in the middle of the night most nights, hearing him open and close doors, finding him out on a busy state route in the middle of the night, being held prisoner because he didn't want her going out, not being allowed to talk on the telephone. It was the longest 24 hours of my life. I honestly have to say I was literally watching the clock counting down the minutes until I could get out of there. I would not have left Ty's mother alone in that circumstance. But, once Tim showed up, I wanted to get my girls out of there before God knows what took place.

Not much scares me more than someone who hears directly from God. There was a lot of talk about how he would do whatever God told him to do. Much of his talk to God is out loud and clearly audible to everyone. Some of it is silent and some of it is whispered. One of the things he whispered was that he was not going to tie her up with rope and drag her. He would take her hand like she was his mother and lead her. That was frightening.

This all has me questioning again the nature of man. I looked at my father-in-law's body yesterday and had a feeling eerily similar to when I looked at my grandmother's body after she had died. That was not her. She was somewhere else. I just knew that in my heart. As I looked at Ty's father sitting on the couch mumbling yesterday I thought "That is not the man I knew.". His brain is keeping his body up and moving around, his heart is beating, his kidneys are functioning. But, I've known Ty's father and loved and respected him for almost 23 years now. He's a caring, loving, intelligent man. He's the protector of his family. He would be mortified to know that he is acting this way. He would be disgusted at the behavior his body is carrying out now. But, if that's not Ty's father, where has he gone? Thich Nhat Hanh's teaching that when conditions are right, we manifest and when conditions are no longer right we no longer manifest comes to mind now. His brain is not able to function anymore to allow him to manifest. Thich Nhat Hanh says we don't come and go. We do not come from anywhere and we do not go anywhere. So, it's not right to say he's gone. I'm not sure I buy into that completely. But, I do know the man I knew is no longer with us.

I'm glad we went to Springfield on Friday. I don't know if our being there prompted the break, or if it was synchronicity or God's timing. But, Ty's mother needed us there for a couple of reasons. She's looking for validation of her decision to put him in a nursing home. She doesn't want to hear "It's your decision, mama.". She wants people to back her up on it. This has to be for her worse than her worst nightmare. She has dedicated 51 years of her life to her husband and would stick with him through "better or worse, in sickness and in health". But, what can she do when living with him threatens both hers and his physical safety? She also wants us to know first hand what she's been going through. Before this trip, in the back of my mind I thought that maybe if she were just a little stronger person, she could hang onto what they had for a little while longer. Now, there is no doubt in my mind that she cannot spend another night alone with him.

This, obviously, is a very trying time for all of us. I saw the stress on Ty's mother and Tim yesterday. I've seen the stress on Ty. I see people grieving and mourning the loss of a father and husband who is still physically with us. Yesterday on the way back, I asked Ty what she wanted for dinner. She answered "For things to be the way they used to be." Impermanence is a two edged sword. The old must pass away to make way for the new. We cherish precious moments because we know they are fleeting. We appreciate those times with our children because we know one day they will grow up and no longer need us. Impermanence assures us that no matter how bad the pain, it won't last forever. Impermanence allows us to get through the hard times by knowing all we have to do is "hold on a little while longer" (thinking of the song by Sound of Blackness). But on the flip side, we cling; and then impermanence causes suffering. We don't want to let go of the good times. We want to think our dad will always be strong and loving and kind and there for us. We forget that if it were not for impermanence we would not have grown up and had our own children that we cherish so deeply. If we had the power to hold them back, they'd never have their own. We remember the the "good old days" and want them back. As Carly Simon sang and this is the one line from a song that has meant more to me than any other ever "These are the good old days.". I try to remember that each and every day.

Rough days are ahead. I think all of us thought when we got the diagnosis a couple of years ago that we had more time. Just six months ago we thought we had more time. Just two week ago... It seems like his Alzheimer's has exploded. There are some health issues that maybe, maybe give us some hope that, if they are corrected the hallucinations will not be as bad. But, it's clear that a major phase in Ty's family is gone now for both the children and for her mother and it's a very hard thing to deal with.
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Chuck said...

Wow...what an ordeal, and as you said, Ty's mom has been living it in various forms for a while. Was he admitted to the hospital? We'll certainly be thinking of you guys in the coming weeks and months.

kc bob said...

Your story moved me to tears Brian.. I am so sorry for the pain that you all must be going through. Ann's dad died last year and had Alzheimer's the last 7 or 8 of his years but never had those kinds of episodes.

Thank you for sharing this difficult story.. it was gut wrenching to read but very informative. I will hope with you dear friend that the days ahead are better ones for Ty's dad and her whole family.

Blessings, Bob

Steven Rowe said...

Brian, sorry to hear your story, and it unfortunately sounds all so true.
Law enforcement is often not a good source for legal advice - in this case no psychiatric hospital can accept a commitment without the legal authority to do so (and the legal authority is not a medical power of attorney).
Most Alzheimer's patients do not have the massive psychosis that he has, and the combination of both does make placement difficult.
good luck to you and your family in these tough times

Brian said...

p.s.- Tim's day ended up being more like 48 hours. He and Ty's mother stayed at the second hospital (not the mental hospital) waiting for the judge's order which finally came this morning. But, they did not have a bed. So, they had to take Ty's father back to the mental hospital in Lexington. Another piece of red tape, he had to be transported to the hospital by law enforcement. So, now they had to wait for the sheriff to get " 'round to it". Finally, 27 hours after arriving at the second hospital, they are on the way back to the state mental hospital which will now accept him until we can find a nursing home (hopefully in the next couple of days).

I fully understand wanting to protect people's rights. I was shocked to find out how easy it is to have someone committed to a hospital for evaluation/observation. But, in this case, Ty's father has been in the hospital three times within the last month. Law enforcement has been involved a couple of times. His doctor was recommending he be admitted. But, Ty's mother and brother were forced to wait in chairs at the hospital for more than 24 hours for yet another "interview", a judge's orders and the sheriff to provide an ride back to the place where he had just come from.

Thanks for your support and allowing me to vent. I appreciate you taking the time to read it. As painful as it was to read, this is not the half of it. I cannot imagine the trauma this has caused for Ty's mother.


Kelly said...

Your writing brings up overwhelming emotion and fear. I can't imagine seeing my Dad like this and needing to worry that he will hurt himself and others. It has to be so painful for the entire family. I wasn't aware that it was so difficult to find help. That scares me. I hope and pray that there are treatable medical reasons beyond alzheimers that are causing the severe behavior. Your family will be in my prayers.

Don said...

I feel your pain. I experienced the same thing with my Dad. Fortunately, we were able to get him into a care center before the disease "exploded" (as you put it). One month from his death in Jan. 2005, He had no idea who I was. It is the saddest of all diseases. A functioning body (that appears to have been vacated by the spirit). I am with you and Ty on this. You are in my thoughts.

Brian said...

Thanks Don, Bob and all. It means a lot to me to be able to share our story and to know that you are holding us in your thoughts.

Unknown said...

Stunning portrait, so well-written. Really terrifies me too... my grandmother had dementia. The changed person is what is so difficult to take, isn't it? Thanks for being so straight forward and truth-telling. I also resonate with your questions of "what makes us persons?"

Peace to all of you and dear Ty and her mother and her brothers especially.

Brian said...

Thanks, Julie.

The changed person is very difficult to understand. And, it makes me very much wonder at what point we are no longer ourselves. There's no anger at all for my father-in-law because he's simply not in control of his behavior. There's a lot there that resembles him in some ways. But, there's so much that is just not him.

Susan said...

Brian, this was so well written. Thank you. My grandmother had Alzheimer's for about 5 years and died a decade ago. In my late 40's I worked as a nursing assistant in the Alzheimer's unit at an assisted living home. What an eye opener. If statistics prove correct, as the boomers age society will have quite the burden on their hands with this disease. Hopefully a cure will be found before then. At the ALH there was only one or two elderly gentleman with the symptoms you're describing Ty's father having. Most were, surprisingly, pretty "content". Though I believe they were all receiving antipsychotic medications. Grace and peace.