Life with Dementia--Part I: The Beginning of the End
Part I of my attempt to record life with my father in the years when he suffered with dementia and Parkinson's disease. It's a lot to put into thoughts and I've never really done so before.
At this point in my life, November brings to mind thoughts of several things: cooler weather, memories of visits from my grandparents, Christmas is coming!, and memories of November 2004 when I knew the family support on which I had so often counted was really disappearing.
That November, I received two night-time phone calls. The first one was early in the month, not even two months after Mama had passed away, after I had just put baby Emmeline down for the night. It was my dad and it was odd for him to call me; I usually called him. He sounded very strange. I could tell from his voice that he was smiling and he was a little "giddy," an emotion I had never heard in his voice before. He got right to his point. "What would you think if I got married again?!" With that question, I fully entered the weird world of dementia and there would be no turning back until the corner was turned.
He went on to tell me about a teller at his bank who was always nice to him and he had known for a while that she really liked him. He had decided that he was going to ask her to marry him because he just really needed somebody around. He said that Mama had always been jealous of her. And that's when his voice changed. He became agitated and started to speak of Mama in the present tense.
"She doesn't like it, though. She's mad and she doesn't want me to be happy."
"Who is mad?" I asked, thinking that surely he wasn't talking about Mama.
"Your mama," he whispered. "She's just sitting there on the couch and she won't speak to me."
"Daddy, Mama died, remember?"
An eerie laugh, followed with a frantic whisper, "She's back. I don't know how she got here from Oklahoma because she doesn't have any legs or arms now. And she won't eat anything."
No reply for a minute from my end. What could I say? We knew there was something wrong; Mama knew and had tried to cover for Daddy for several years. This was such a rapid decline, though, and we thought we had more time.
"Wait a minute. I've got to turn down the television. She keeps turning it up too loud. I guess she can't hear now, either." He left the phone and I could hear the television volume decrease and his voice as he argued with "someone."
When he came back to the phone, he told me that Mama wouldn't eat. He said he went to Dairy Queen and bought chicken strips and she wouldn't touch them. Then, he got more frantic as he worried that she would die if she didn't eat something.
He returned to the topic of his upcoming marriage and Mama's jealousy. Then, he told me that maybe I could talk to her and that he would put her on the phone. The five minutes I waited, while hearing him try to convince "Mama" to talk to me were the first of many bizarre moments with my father, usually over the phone. That receiver was to be a portal into my own little twilight zone nearly every time I saw his number register on my caller ID.
When he finally came back to the phone, he apologized and said she was just being stubborn. So, for the first of many times to follow, I entered into his world to try to understand what was going on in his mind, so I could understand what I needed to do. I played along.
"How long has she been back?" I asked.
"She came back last night," he replied. Then he told me that he had visited his lawyer this morning because he didn't want to get into trouble. I questioned further to discover what trouble.
He explained to me that he wanted the lawyer to cancel the life insurance policy submissions because he would get in trouble if the companies found out Mama was still alive and he had kept the money. With dementia, tiny grains of a person's self are in amidst the strangeness and this made "sense" for a man who was always chosen by his department for state audits because of his meticulous record-keeping and for a man who reported on income tax every dime of the cash we made from selling pecans that we picked by hand each fall. I could hear the fear in his voice now.
After entering his world, I was shaken. I decided to call my cousin, Linda, to see what she thought we should do. Always wise, Linda told me I should get the name of his lawyer and contact him to see if my dad had really visited him. Maybe the lawyer could advise me.
So, the next day, I called my father and found him calmer than the night before. I was able to find out the name of his lawyer and give him a call. The lawyer was very nice on the phone.
"I'm glad you called," he told me, "because I really wondered if I should try to contact you."
I told him what my father had told me the night before and he confirmed the visit to his office.
"I think there's something wrong," he said. " I think you might need to consider getting legal guardianship of your father."
That was a new one for me. I had dealt with legal guardians of children often in my teaching days, but I did not know adults could have legal guardians.
He began to tell me some of the details of the process and recommended a friend who could handle if for me. He told me that my dad's case might be a hard one, like one he had. Then, he told me about "the blue cat." He said family members were worried about the mental state of a relative and wanted to obtain guardianship of her. When the woman was brought before the judge, she was having a very good day. All of her comments were lucid and the lawyer said he was getting very frustrated. The woman's niece leaned over and whispered in his ear, "Ask her about her blue cat."
He said that when she heard his question, a strange look came over her face and she began to exhibit the behavior that had concerned her family. She went into detail when questioned about her blue cat who talked to her and cooked for her, etc...and the judge was finally able to see what the family saw; guardianship was granted. He thought my dad could probably appear lucid on stand, also and that I would need to have witnesses and keep records of his behavior. Thus, my journaling of the thoughts he expressed to me began.
That same day, one of my dad's good friends, Mr. Wilson, called me. He had spoken to my dad and he also heard about Mama being back. I told him what the lawyer said and he recommended a lawyer friend from his oil-business days. Mr. Wilson had also spoken to a friend and former student of my dad's, David, who had been concerned for about a year that something was wrong with him. Mama had told me how upset she was that one night, during a phone call with David, my dad had become furious and started yelling hateful things through the phone. David later told me he kept picking up on little things and then he decided to test it by throwing in some fake cattle numbers to my dad. He never caught them. My dad could take you to cattle in any of his herds and tell you the genetic history of each one, going back several generations, usually completely from memory. David knew Doc would have normally caught those fake cattle as soon as they were mentioned.
Mr. Wilson did a little research and found out that in Louisiana the process was different. If we could get my dad to visit his Mr. Wilson's home in Louisiana, we could call the local coroner, who could have him committed for 24 hours for examination. I decided that it would be less scary for him to go through the courts in Texas, though. I had no idea the process would take eight long months.
So, I called Mr. Wilson's lawyer friend and he agreed to take the case. He told me it would not be easy, but it was possible.
A few weeks later, we were awakened by our second November big phone call at 2:00 in the morning. It was from the owner of a car repair garage in east Texas. My dad showed up at his garage, confused and disoriented. He asked my dad if there was someone he could call and my dad found my number in his wallet, thanks be to God. He was trying to visit his brother in Oklahoma for Thanksgiving and had gotten lost. My dad, the former boy scout, who could always correctly name orientations and could find his way anywhere. I called my lawyer, who lived within an hour of the garage, and he went and picked up my dad.
He said it was a sad sight to see him, there, in the cold, on the steps, looking like a lost child. He said we were lucky the mechanic was a good man because someone could have really taken advantage of my dad in that state. My dad didn't even question the lawyer, whom he'd never met. He just got in the car with him and let him take him home. My dad was just 68; I was just 31. Mama was gone and my dad was disappearing, normalcy flickering in and out. And I was a new mom, only recently become stay-at-home mom, frightened of what lay ahead with the strong anchor of my mother gone forever.
At this point in my life, November brings to mind thoughts of several things: cooler weather, memories of visits from my grandparents, Christmas is coming!, and memories of November 2004 when I knew the family support on which I had so often counted was really disappearing.
That November, I received two night-time phone calls. The first one was early in the month, not even two months after Mama had passed away, after I had just put baby Emmeline down for the night. It was my dad and it was odd for him to call me; I usually called him. He sounded very strange. I could tell from his voice that he was smiling and he was a little "giddy," an emotion I had never heard in his voice before. He got right to his point. "What would you think if I got married again?!" With that question, I fully entered the weird world of dementia and there would be no turning back until the corner was turned.
He went on to tell me about a teller at his bank who was always nice to him and he had known for a while that she really liked him. He had decided that he was going to ask her to marry him because he just really needed somebody around. He said that Mama had always been jealous of her. And that's when his voice changed. He became agitated and started to speak of Mama in the present tense.
"She doesn't like it, though. She's mad and she doesn't want me to be happy."
"Who is mad?" I asked, thinking that surely he wasn't talking about Mama.
"Your mama," he whispered. "She's just sitting there on the couch and she won't speak to me."
"Daddy, Mama died, remember?"
An eerie laugh, followed with a frantic whisper, "She's back. I don't know how she got here from Oklahoma because she doesn't have any legs or arms now. And she won't eat anything."
No reply for a minute from my end. What could I say? We knew there was something wrong; Mama knew and had tried to cover for Daddy for several years. This was such a rapid decline, though, and we thought we had more time.
"Wait a minute. I've got to turn down the television. She keeps turning it up too loud. I guess she can't hear now, either." He left the phone and I could hear the television volume decrease and his voice as he argued with "someone."
When he came back to the phone, he told me that Mama wouldn't eat. He said he went to Dairy Queen and bought chicken strips and she wouldn't touch them. Then, he got more frantic as he worried that she would die if she didn't eat something.
He returned to the topic of his upcoming marriage and Mama's jealousy. Then, he told me that maybe I could talk to her and that he would put her on the phone. The five minutes I waited, while hearing him try to convince "Mama" to talk to me were the first of many bizarre moments with my father, usually over the phone. That receiver was to be a portal into my own little twilight zone nearly every time I saw his number register on my caller ID.
When he finally came back to the phone, he apologized and said she was just being stubborn. So, for the first of many times to follow, I entered into his world to try to understand what was going on in his mind, so I could understand what I needed to do. I played along.
"How long has she been back?" I asked.
"She came back last night," he replied. Then he told me that he had visited his lawyer this morning because he didn't want to get into trouble. I questioned further to discover what trouble.
He explained to me that he wanted the lawyer to cancel the life insurance policy submissions because he would get in trouble if the companies found out Mama was still alive and he had kept the money. With dementia, tiny grains of a person's self are in amidst the strangeness and this made "sense" for a man who was always chosen by his department for state audits because of his meticulous record-keeping and for a man who reported on income tax every dime of the cash we made from selling pecans that we picked by hand each fall. I could hear the fear in his voice now.
After entering his world, I was shaken. I decided to call my cousin, Linda, to see what she thought we should do. Always wise, Linda told me I should get the name of his lawyer and contact him to see if my dad had really visited him. Maybe the lawyer could advise me.
So, the next day, I called my father and found him calmer than the night before. I was able to find out the name of his lawyer and give him a call. The lawyer was very nice on the phone.
"I'm glad you called," he told me, "because I really wondered if I should try to contact you."
I told him what my father had told me the night before and he confirmed the visit to his office.
"I think there's something wrong," he said. " I think you might need to consider getting legal guardianship of your father."
That was a new one for me. I had dealt with legal guardians of children often in my teaching days, but I did not know adults could have legal guardians.
He began to tell me some of the details of the process and recommended a friend who could handle if for me. He told me that my dad's case might be a hard one, like one he had. Then, he told me about "the blue cat." He said family members were worried about the mental state of a relative and wanted to obtain guardianship of her. When the woman was brought before the judge, she was having a very good day. All of her comments were lucid and the lawyer said he was getting very frustrated. The woman's niece leaned over and whispered in his ear, "Ask her about her blue cat."
He said that when she heard his question, a strange look came over her face and she began to exhibit the behavior that had concerned her family. She went into detail when questioned about her blue cat who talked to her and cooked for her, etc...and the judge was finally able to see what the family saw; guardianship was granted. He thought my dad could probably appear lucid on stand, also and that I would need to have witnesses and keep records of his behavior. Thus, my journaling of the thoughts he expressed to me began.
That same day, one of my dad's good friends, Mr. Wilson, called me. He had spoken to my dad and he also heard about Mama being back. I told him what the lawyer said and he recommended a lawyer friend from his oil-business days. Mr. Wilson had also spoken to a friend and former student of my dad's, David, who had been concerned for about a year that something was wrong with him. Mama had told me how upset she was that one night, during a phone call with David, my dad had become furious and started yelling hateful things through the phone. David later told me he kept picking up on little things and then he decided to test it by throwing in some fake cattle numbers to my dad. He never caught them. My dad could take you to cattle in any of his herds and tell you the genetic history of each one, going back several generations, usually completely from memory. David knew Doc would have normally caught those fake cattle as soon as they were mentioned.
Mr. Wilson did a little research and found out that in Louisiana the process was different. If we could get my dad to visit his Mr. Wilson's home in Louisiana, we could call the local coroner, who could have him committed for 24 hours for examination. I decided that it would be less scary for him to go through the courts in Texas, though. I had no idea the process would take eight long months.
So, I called Mr. Wilson's lawyer friend and he agreed to take the case. He told me it would not be easy, but it was possible.
A few weeks later, we were awakened by our second November big phone call at 2:00 in the morning. It was from the owner of a car repair garage in east Texas. My dad showed up at his garage, confused and disoriented. He asked my dad if there was someone he could call and my dad found my number in his wallet, thanks be to God. He was trying to visit his brother in Oklahoma for Thanksgiving and had gotten lost. My dad, the former boy scout, who could always correctly name orientations and could find his way anywhere. I called my lawyer, who lived within an hour of the garage, and he went and picked up my dad.
He said it was a sad sight to see him, there, in the cold, on the steps, looking like a lost child. He said we were lucky the mechanic was a good man because someone could have really taken advantage of my dad in that state. My dad didn't even question the lawyer, whom he'd never met. He just got in the car with him and let him take him home. My dad was just 68; I was just 31. Mama was gone and my dad was disappearing, normalcy flickering in and out. And I was a new mom, only recently become stay-at-home mom, frightened of what lay ahead with the strong anchor of my mother gone forever.
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