We should have been relieved. It should have felt like a burden lifted; but, we were like a busy bee hive that lost it's queen. We were buzzing and flitting with nothing to do. Our outrage at what had just happened in court was becoming overwhelming the more we discussed it. Angelo told Matt that cops do what they did to Frank when they really want to get a guy. They pick them up on a warrant on a Friday afternoon and by the time they get to the police station and they get their phone call, it's too late to post bail so they have to stay the weekend. Maybe that's all they intended but by the nice local cop calling me, giving me time to get there to post bail, I spoiled their plans for Frank's weekend stay so they had to deny bail. I don't know though. Vincent was coming down from New Hampshire to visit this weekend. We had to call him and let him know so he didn't make that long drive and not see Frank. He was always closest to Frank and took the news pretty hard. Maybe it's worse hearing bad news from far away when there's nothing that you can do. It's one of those things that the more you think about it, the more victimized you feel, so late that evening, feeling helpless and desperate to help Frank, Vince sent an email to Frances and Eric, Frank's kids, via Facebook. It was a plea for them to help their dad, that he was really sick and needed their help to get back home. There was nothing wrong, it didn't place blame, just letting them know that Frank was in a bad situation and asking them to help him.
Saturday morning, the next day, at 8:00, the phone rings. Caller ID says it's Delaware County Police. "Now what", I'm thinking. I answer the phone. "Hello, is Vincent Layton there." the caller asks.
"Uhh, no. He doesn't live here." I answer, confused.
"This is Officer McCreedy with the Delaware County Police. We have information that he was visiting you this weekend."
I am still confused about what this guy wants now, it's the cop from the courthouse yesterday. "Uhh,no. He was coming to help us take care of Frank this weekend, but since you arrested him, we told him not to come." I said sarcastically.
"Oh, okay. Well, he sent an email to Frances and Eric and their mother wants you to know that if you ever contact them again she will consider it harassment and press charges." the cop tell me.
"Oh, really. And why would you be telling me this, since I didn't try to contact them?" I want to know. He begins to answer me, but I interrupt him, ". . . and furthermore, they're the ones always contacting us. They've called my children and contacted them on Xbox many times . . . and Eric's Xbox ID is 'bluntblazer', I didn't even know what that means but my son told me it means he smokes pot, so you tell her that I don't think she's done such a great job with them." I added that just in case Kat was standing right there next to him listening in while he did this as a favor for his neighbor.
Officer McCreedy continues, "yeah well, they were very upset at his email and she just wants you to know that she does not want you to contact them."
"Well, they should be upset. They don't know how unwell he is, but maybe they should." I said.
"Yeah, I was the one who arrested him yesterday, he didn't look too good." the officer stated.
"I know, I spoke to you yesterday." I informed him. There's a pause; he's thinking I guess.
"That was you?" he asks like it's some great revelation. I wonder why he's so astonished. Is it because Kat painted us as monsters and his impression of me didn't fit the illusion she painted, or is it because he was surprised that Frank's family was able to make it to the arraignment even though they gave us no notice. I'm left to wonder.
"Yes, that was me, I'm Matt 's wife. You know Frank has dementia and we've been working really hard taking care of him. We just got him stabilized on meds after being in the hospital for three weeks and now it's all ruined." I took this opportunity to vent.
"They'll take good care of him, he'll be just fine." he dismissed my worry.
"You know, Frank was a good dad and he hasn't seen his kids in six years. I don't know if you're a father, but if he has to take that hit just to look at his own child's face once in a while, I don't blame him; I'd do the same thing." I said angrily.
"I hear ya. I'm a divorced dad and I have custody of my kids. I don't know what I would do if I didn't have them." He said honestly.
I continued my ranting, "And you know what else? I could not believe the level of disrespect in that courtroom. There is a man standing in front of you in shackles, with his life in ruins, and you were all laughing and having a great time like it meant nothing at all to you. It made me sick." I was so glad I had the opportunity to get this out.
"Hey, we do this every day, it's nothing to us, we have to try and get through the day too." He tried to excuse the behavior.
"Exactly, it's nothing to you, but it's something to everyone that comes in there, and that should be respected. And what's with that judge? It looked like he just came in from mowing his lawn. He can't dress a little, maybe put on a tie before he shatters someone?" I observed.
"No, he came in on his day off just to do this, he's a good guy." the cop says.
"Well, maybe he should dress the part, you know, look like he came prepared at least." I said.
Instead of getting angry though, he seems happy to continue making small talk with me, and oddly, doesn't seem ready to end the conversation.
"Well, I have no plans to contact Kat or the kids, so . . . is that all you wanted?" I ask.
"If I could just get Vincent's number . . ." he asks.
Vincent is freaked out. "What the hell? I had a cop call me this morning!" Vince called Matt after he got off the phone with McCreedy.
"Yeah, he called us too, and we didn't even talk to them." Matt replied.
"I was upset about Frank getting arrested . . . and I might have had a little too much to drink too, but I don't think I said anything wrong though." Vince sent Matt a copy of the email he sent to the kids. It sounded like he was a little emotional, but not angry or crazy or anything, he just asked if they could help their dad. They might have been upset because there was a time when we were close and he was funny Uncle Vince, and now they feel like the bad guys. Especially Eric, because he was the one who claims to have seen Frank at their house, and as a result of that, Frank was arrested, sealing his fate.
"Can she do this? I mean, I didn't do anything." Vince is upset.
"No, don't worry, just don't contact them again." Matt says. "Susie's cousin Angelo is going to send him a letter telling him not to call us again and if he has anything else to say he should contact him."
Angelo was outraged. Matt called him right away and told him what happened. "Are you kidding? What's with this guy. He's going to warn you not to do something just in case you were thinking of it? A cop wouldn't do this. This is personal for him for some reason. I'll take care of it." Angelo fumed.
"Oh, believe me, I won't send any more emails." Vince said assuredly.
A story of our family member, a former college football player, struggling with the diagnosis of Frontotemporal Dementia in the midst of a divorce, and how our lives have been changed by trying to find a diagnosis and treatment while at the same time standing up for his rights as he becomes disabled and can no longer fight for himself. Disclaimer: Names have been changed to protect privacy.
Saturday, January 12, 2013
Friday, January 11, 2013
40: FTD Victim Exploited
"Mrs. Layton?" the voice on my cell phone from an unknown number asks.
"Yes, this is she." I answered.
"This is Officer Fox, of the Montgomery County Police Department." the caller stated.
I knew it was about Frank, I'm thinking they found him wandering somewhere dangerous, or maybe they were calling to follow up on him being lost the other night. Frank's only been home from the hospital for a week after being diagnosed with Frontotemporal Dementia and our lives are more turned upside down than before he went in. If we aren't with him, we're talking about him. If we're not talking about him, we're worrying about him. I took the day off from work and actually felt guilty for not spending it at Frank's house watching old World War II movies, his favorite thing. He's got a video tape of every movie about WWII ever made, I think. We just watched his newest purchase, "Swing Kids". It was a good movie, about German kids dancing to American swing big band music in private clubs during WWII, but the Nazis banned it so they had to be discreet and then, of course, they got caught. My kids are still making fun of their mantra "Swing Heil!"
"Is everything okay?" I ask the officer.
"Well, I just thought you would want to know that I had to pick up your brother this morning on a warrant from Delaware County. He's fine but I thought you would be worried about him." the officer stated kindly. He had my phone number from when I reported Frank lost two nights ago.
"A warrant? He's been in the hospital for three weeks and he's only been home a few days, and he's got dementia. What could he have done?" I ask.
"It was for a PFA violation." the officer informed me.
"Oh my gosh. I can't believe it. He's been in a nasty divorce for six years now." I told him.
"I figured it was something like that, but they called and asked if I would pick him up, and then they came and got him here. It's a courtesy thing." the officer explained.
"Well, I just thought you would want to know." Officer Fox sounded apologetic.
I thanked him and hung up. I had only just gotten to the mall. I needed to do some retail therapy. I was feeling a little stressed out over all the extra work and worry we've had lately and thought I would take some 'me' time. So much for that. Now I just feel guilty that I wasn't there when they came and got him, or if I had taken him out with me they couldn't have picked him up, or if the hospital had just kept him, or if that stupid nursing home would have accepted him . . . I called Matt and told him. He was furious. This was definitely planned out. When they picked up Frank for PFA violations before they always called first to say there was a warrant and let him come in. This was covert, because we never got a warning and if Officer Fox hadn't called, we still wouldn't know where he was.
Mulva Fargo, Kat's attorney warned Nicholas, before he resigned the case, that they would report Frank for violating the PFA if we didn't drop the alimony petition. Matt called her bluff. We thought we would have had our hearing by now and Kat would be helping with Frank's care, since they are still legally married and she's the one holding the divorce up by not signing the papers. Guess we were wrong. Matt called Angelo to tell him what happened since he would be looking for Frank too and he couldn't believe it also. He said, "I'll call and find out where the arraignment is and post bail for him."
We thought we would have him back in a few hours and as soon as they found out how ill Frank was, they would release him immediately. No, that would actually be the human thing to do.
In November, four months ago, when we realized how bad Frank's behavior was becoming, Angelo petitioned the court for an Emergency Hearing for spousal support. His condition was becoming too much for us to support and we needed that hearing. Despite the title "Emergency" the hearing was scheduled for April, five months away. I called our Montgomery County Courthouse to ask how long it takes to schedule an emergency hearing there and they said it was a day or two; five months is inhumane. My old high school girlfriend is a court reporter at Montgomery County; when I told her about what happened, she whispered, "I've heard so many stories; everyone knows how corrupt Delaware County is, you'll never win there."
So with the hearing for support scheduled for April, Kat has had Frank arrested in March. I go with Angelo to post bail to get Frank back. We drive to a town in Delaware County, an hour away, to a Municipal Courthouse. It's a little empty building in the middle of nowhere, there's two officer there, and a couple bailiffs when we arrive. One is the arresting officer, his badge says "McCreedy". He's probably wondering how we found out about the hearing, but he says to Angelo, "you the lawyer?"
Angelo answers that he is and McCreedy goes, "Yeah, I know Frank."
I'm wondering why he's telling us this, so I ask,"Oh really, how do you know him?"
"I'm his wife's neighbor." he tells me. "yeah, I know all about this guy."
"oh crap!" I'm thinking. Kat's always been a story teller, who knows what she's been feeding this lardhead, and she just got him to do her bidding, and all so she doesn't have to pay spousal support. I figure I better cut this conversation short because he looks like one of those unstable kind of cops that would falsify records or something evil. He looks and has mannerisms exactly like Hank, the DEA agent, on Breaking Bad and I don't like the looks of him.
"You know the judge had to come in on his day off for this." the Hank look-alike continues.
I guess we're supposed to feel bad for him. I look inside the courtroom and don't see a judge. I find out it's because he doesn't look like a judge. He's got a plaid flannel shirt on and jeans and looks like he just came in off his tractor. I find out later that Municipal Judges, or Magistrates, aren't even lawyers. They're just some guy that runs for political office and gets to decide people's fates without having to endure the trials and tribulations of law school and learning all those pesky laws. It showed too. If I could remember his name, I would like to write him a letter and tell him what his decision has done.
Court begins with a gavel bang and Frank is brought out of a holding cell in handcuffs and leg shackles. I hear them shouting at him because he doesn't comprehend their directions about where to go and how to walk with his ankles chained together. He finally gets it together and he walks past me. I'm trying to make eye contact, but he doesn't look at me until I say "Hi Frank". He says hi back to me and continues his perp walk to the front of the "courtroom". The judge accuses him of violating the PFA and Angelo tells the judge that we would like to post bail.
The judge says "Bail denied!"
Angelo says, "Your honor, the defendant has just been released from the hospital after a three week stay. He's severely incapacitated and was diagnosed with dementia by the psychiatrist there."
"Counselor, I said bail is denied." the municipal judge stated firmly.
"Your honor, may I say again that the defendant is in a very fragile state right now and . . ."Angelo tried to argue to no avail.
"Well, jail will be the best place for him then." the judge had his mind made up before we even got there; Kat had already gotten to him through her friend McCreedy.
Then the cops, the judge and the bailiffs began bantering and laughing out loud while they filled out the paperwork to take Frank to jail and Frank stood before them in shackles.
I suddenly felt cold, I had to get out of there before I threw up.
"Yes, this is she." I answered.
"This is Officer Fox, of the Montgomery County Police Department." the caller stated.
I knew it was about Frank, I'm thinking they found him wandering somewhere dangerous, or maybe they were calling to follow up on him being lost the other night. Frank's only been home from the hospital for a week after being diagnosed with Frontotemporal Dementia and our lives are more turned upside down than before he went in. If we aren't with him, we're talking about him. If we're not talking about him, we're worrying about him. I took the day off from work and actually felt guilty for not spending it at Frank's house watching old World War II movies, his favorite thing. He's got a video tape of every movie about WWII ever made, I think. We just watched his newest purchase, "Swing Kids". It was a good movie, about German kids dancing to American swing big band music in private clubs during WWII, but the Nazis banned it so they had to be discreet and then, of course, they got caught. My kids are still making fun of their mantra "Swing Heil!"
"Is everything okay?" I ask the officer.
"Well, I just thought you would want to know that I had to pick up your brother this morning on a warrant from Delaware County. He's fine but I thought you would be worried about him." the officer stated kindly. He had my phone number from when I reported Frank lost two nights ago.
"A warrant? He's been in the hospital for three weeks and he's only been home a few days, and he's got dementia. What could he have done?" I ask.
"It was for a PFA violation." the officer informed me.
"Oh my gosh. I can't believe it. He's been in a nasty divorce for six years now." I told him.
"I figured it was something like that, but they called and asked if I would pick him up, and then they came and got him here. It's a courtesy thing." the officer explained.
"Well, I just thought you would want to know." Officer Fox sounded apologetic.
I thanked him and hung up. I had only just gotten to the mall. I needed to do some retail therapy. I was feeling a little stressed out over all the extra work and worry we've had lately and thought I would take some 'me' time. So much for that. Now I just feel guilty that I wasn't there when they came and got him, or if I had taken him out with me they couldn't have picked him up, or if the hospital had just kept him, or if that stupid nursing home would have accepted him . . . I called Matt and told him. He was furious. This was definitely planned out. When they picked up Frank for PFA violations before they always called first to say there was a warrant and let him come in. This was covert, because we never got a warning and if Officer Fox hadn't called, we still wouldn't know where he was.
Mulva Fargo, Kat's attorney warned Nicholas, before he resigned the case, that they would report Frank for violating the PFA if we didn't drop the alimony petition. Matt called her bluff. We thought we would have had our hearing by now and Kat would be helping with Frank's care, since they are still legally married and she's the one holding the divorce up by not signing the papers. Guess we were wrong. Matt called Angelo to tell him what happened since he would be looking for Frank too and he couldn't believe it also. He said, "I'll call and find out where the arraignment is and post bail for him."
We thought we would have him back in a few hours and as soon as they found out how ill Frank was, they would release him immediately. No, that would actually be the human thing to do.
In November, four months ago, when we realized how bad Frank's behavior was becoming, Angelo petitioned the court for an Emergency Hearing for spousal support. His condition was becoming too much for us to support and we needed that hearing. Despite the title "Emergency" the hearing was scheduled for April, five months away. I called our Montgomery County Courthouse to ask how long it takes to schedule an emergency hearing there and they said it was a day or two; five months is inhumane. My old high school girlfriend is a court reporter at Montgomery County; when I told her about what happened, she whispered, "I've heard so many stories; everyone knows how corrupt Delaware County is, you'll never win there."
So with the hearing for support scheduled for April, Kat has had Frank arrested in March. I go with Angelo to post bail to get Frank back. We drive to a town in Delaware County, an hour away, to a Municipal Courthouse. It's a little empty building in the middle of nowhere, there's two officer there, and a couple bailiffs when we arrive. One is the arresting officer, his badge says "McCreedy". He's probably wondering how we found out about the hearing, but he says to Angelo, "you the lawyer?"
Angelo answers that he is and McCreedy goes, "Yeah, I know Frank."
I'm wondering why he's telling us this, so I ask,"Oh really, how do you know him?"
"I'm his wife's neighbor." he tells me. "yeah, I know all about this guy."
"oh crap!" I'm thinking. Kat's always been a story teller, who knows what she's been feeding this lardhead, and she just got him to do her bidding, and all so she doesn't have to pay spousal support. I figure I better cut this conversation short because he looks like one of those unstable kind of cops that would falsify records or something evil. He looks and has mannerisms exactly like Hank, the DEA agent, on Breaking Bad and I don't like the looks of him.
"You know the judge had to come in on his day off for this." the Hank look-alike continues.
I guess we're supposed to feel bad for him. I look inside the courtroom and don't see a judge. I find out it's because he doesn't look like a judge. He's got a plaid flannel shirt on and jeans and looks like he just came in off his tractor. I find out later that Municipal Judges, or Magistrates, aren't even lawyers. They're just some guy that runs for political office and gets to decide people's fates without having to endure the trials and tribulations of law school and learning all those pesky laws. It showed too. If I could remember his name, I would like to write him a letter and tell him what his decision has done.
Court begins with a gavel bang and Frank is brought out of a holding cell in handcuffs and leg shackles. I hear them shouting at him because he doesn't comprehend their directions about where to go and how to walk with his ankles chained together. He finally gets it together and he walks past me. I'm trying to make eye contact, but he doesn't look at me until I say "Hi Frank". He says hi back to me and continues his perp walk to the front of the "courtroom". The judge accuses him of violating the PFA and Angelo tells the judge that we would like to post bail.
The judge says "Bail denied!"
Angelo says, "Your honor, the defendant has just been released from the hospital after a three week stay. He's severely incapacitated and was diagnosed with dementia by the psychiatrist there."
"Counselor, I said bail is denied." the municipal judge stated firmly.
"Your honor, may I say again that the defendant is in a very fragile state right now and . . ."Angelo tried to argue to no avail.
"Well, jail will be the best place for him then." the judge had his mind made up before we even got there; Kat had already gotten to him through her friend McCreedy.
Then the cops, the judge and the bailiffs began bantering and laughing out loud while they filled out the paperwork to take Frank to jail and Frank stood before them in shackles.
I suddenly felt cold, I had to get out of there before I threw up.
Thursday, January 10, 2013
39: Frontotemporal Dementia Progresses
"Does anyone know where Frank is?" my cousin Angelo calls and asks.
Matt, Angelo and I are taking turns looking in on Frank. Angelo goes over in the morning and puts dinner in the crockpot. Matt and I take turns in the evening making sure he takes his meds and he's safe. Since Angelo's job as a realtor is pretty flexible, we paid him to look in on Frank and sort of be a companion. I couldn't ask my children or any older relatives because honestly, I wasn't sure they would be safe considering he was having hallucinations and not telling us about them. At least we're all Frank's age and he knows us well. The plan is that Angelo would hang out with Frank, cook, watch tv, go out sometimes; that lasted about a day and a half. Frank would give off this uncomfortable vibe like he wanted Angelo to leave. He would stand up and sit down over and over or he would begin pacing. Then he would stand in the middle of the room and stare at him strangely. There was no reading his eyes, they were blank, so you couldn't tell what his intentions were. Angelo said he couldn't stay with Frank all day, it was too uncomfortable, but he would go in the morning and make sure he took his meds and maybe check in later if he was around.
It's not like I hadn't tried more conventional means of care for him. I called every nursing home I could think of in our area. I thought I had him in at the nursing home my grandmother went to before she passed away. Everyone in town knew my grandmother and everyone loved her. Although she had been gone eight years, they still remembered her when I called and dropped her name. "Oh yes, we loved your grandmother. And how is your family?" the director asked. "We are all doing well, thank you. I remember how much Nanna loved living at Summer House." I gushed.
"Oh that's wonderful, well if there's ever anything we can do . . . " She thought I was through.
I continued, "By the way, my husband's brother is in need of care. He's 50 years old and he's just been diagnosed with Frontotemporal Dementia, and . . ."
"Oh, no we can't take him. I know this diagnosis. It's very bad, these people are unpredictable and can have dangerous outbursts." the director explained.
"He's not dangerous at all. He just sits, he's never had any outbursts." I interrupted hopefully.
"Our average age is 83 here. That's a big difference from fifty. He just doesn't fit in. I'm sorry." She was dismissing me and I could tell there was no convincing her to take Frank. I called Bayada Nurses, a visiting nurse agency. They had a meeting and decided that Frank's diagnosis was unpredictable and dangerous and the nurses could not safely walk into Frank's home. I called a senior daycare center, same answer. Most nursing homes have answering machines and I suppose they only return calls that appeal to them and only one of the other homes I called returned the call, but it was a private nursing home that did not accept Medicare and it would cost $8,000 per month. Even if we got some alimony from Kat, it was still way too expensive. The sad truth is that no one wants to take care of a fifty year old with dementia.
Angelo called around 5:00 only four days after Frank got home from the hospital; we had lost him already. "Are you sure he's not there somewhere? Did you drive around the neighborhood?" I asked.
We took Frank's cars away. While he was in the hospital we sold one of his cars and we hid the other one at Matt's office until we had a buyer for that one too. It was February and extremely cold. I was worried we would find him frozen on the turnpike somewhere. I ran out of the house and went driving to all Frank's favorite places, Giant grocery store food court, Whole Foods food court, Home Depot, Wendy's, Boston Market. I even showed his picture to the workers at Home Depot hoping they had seen him. No, no one had. I called the police next and reported a man with dementia missing. The police operator was very nice and helpful. She took my name and phone number and then asked me if Frank was a veteran. I said that he was National Guard. She told me that the veteran's groups in our area would mobilize to help look for him if needed. Next, I went back home thinking he might show up at our house. When Matt came home we went out together and drove around the streets between his house and our house. We finally found him around 9:00 that evening, right down the street from our house, just walking down the sidewalk. Matt pulled over next to him and he barely looked at us. I called his name and he stopped walking and just stood there. I got out of the car and opened the back door and said, "Get in Frank, you must be freezing." He got in the back seat without a word. I said, "Frank are you cold?" and he answered "yeah". That was pretty much it for conversation. We drove him back to his house, gave him his meds, and waited until he was in bed.
"He was looking for his cars" Matt said. "I know him; he thinks I have them."
"Matt, we can't keep this up" I complained.
I had no idea what was in store for us next though.
Matt, Angelo and I are taking turns looking in on Frank. Angelo goes over in the morning and puts dinner in the crockpot. Matt and I take turns in the evening making sure he takes his meds and he's safe. Since Angelo's job as a realtor is pretty flexible, we paid him to look in on Frank and sort of be a companion. I couldn't ask my children or any older relatives because honestly, I wasn't sure they would be safe considering he was having hallucinations and not telling us about them. At least we're all Frank's age and he knows us well. The plan is that Angelo would hang out with Frank, cook, watch tv, go out sometimes; that lasted about a day and a half. Frank would give off this uncomfortable vibe like he wanted Angelo to leave. He would stand up and sit down over and over or he would begin pacing. Then he would stand in the middle of the room and stare at him strangely. There was no reading his eyes, they were blank, so you couldn't tell what his intentions were. Angelo said he couldn't stay with Frank all day, it was too uncomfortable, but he would go in the morning and make sure he took his meds and maybe check in later if he was around.
It's not like I hadn't tried more conventional means of care for him. I called every nursing home I could think of in our area. I thought I had him in at the nursing home my grandmother went to before she passed away. Everyone in town knew my grandmother and everyone loved her. Although she had been gone eight years, they still remembered her when I called and dropped her name. "Oh yes, we loved your grandmother. And how is your family?" the director asked. "We are all doing well, thank you. I remember how much Nanna loved living at Summer House." I gushed.
"Oh that's wonderful, well if there's ever anything we can do . . . " She thought I was through.
I continued, "By the way, my husband's brother is in need of care. He's 50 years old and he's just been diagnosed with Frontotemporal Dementia, and . . ."
"Oh, no we can't take him. I know this diagnosis. It's very bad, these people are unpredictable and can have dangerous outbursts." the director explained.
"He's not dangerous at all. He just sits, he's never had any outbursts." I interrupted hopefully.
"Our average age is 83 here. That's a big difference from fifty. He just doesn't fit in. I'm sorry." She was dismissing me and I could tell there was no convincing her to take Frank. I called Bayada Nurses, a visiting nurse agency. They had a meeting and decided that Frank's diagnosis was unpredictable and dangerous and the nurses could not safely walk into Frank's home. I called a senior daycare center, same answer. Most nursing homes have answering machines and I suppose they only return calls that appeal to them and only one of the other homes I called returned the call, but it was a private nursing home that did not accept Medicare and it would cost $8,000 per month. Even if we got some alimony from Kat, it was still way too expensive. The sad truth is that no one wants to take care of a fifty year old with dementia.
Angelo called around 5:00 only four days after Frank got home from the hospital; we had lost him already. "Are you sure he's not there somewhere? Did you drive around the neighborhood?" I asked.
We took Frank's cars away. While he was in the hospital we sold one of his cars and we hid the other one at Matt's office until we had a buyer for that one too. It was February and extremely cold. I was worried we would find him frozen on the turnpike somewhere. I ran out of the house and went driving to all Frank's favorite places, Giant grocery store food court, Whole Foods food court, Home Depot, Wendy's, Boston Market. I even showed his picture to the workers at Home Depot hoping they had seen him. No, no one had. I called the police next and reported a man with dementia missing. The police operator was very nice and helpful. She took my name and phone number and then asked me if Frank was a veteran. I said that he was National Guard. She told me that the veteran's groups in our area would mobilize to help look for him if needed. Next, I went back home thinking he might show up at our house. When Matt came home we went out together and drove around the streets between his house and our house. We finally found him around 9:00 that evening, right down the street from our house, just walking down the sidewalk. Matt pulled over next to him and he barely looked at us. I called his name and he stopped walking and just stood there. I got out of the car and opened the back door and said, "Get in Frank, you must be freezing." He got in the back seat without a word. I said, "Frank are you cold?" and he answered "yeah". That was pretty much it for conversation. We drove him back to his house, gave him his meds, and waited until he was in bed.
"He was looking for his cars" Matt said. "I know him; he thinks I have them."
"Matt, we can't keep this up" I complained.
I had no idea what was in store for us next though.
Tuesday, January 8, 2013
38: Finally, a Diagnosis of FTD
It's Super Bowl Sunday. The Green Bay Packers are playing the Pittsburgh Steelers. Matt and I are having a little party; a few friends from college and Matt's fantasy football buddies. We have some trivia games planned, a little football pool where everyone buys a box and the winners are announced at the end of the quarters, and of course some food. I got a party tray of sandwiches at Panera and I made a few appetizers and desserts myself. Just a few more last minute things at the grocery store to buy and I'll be ready.
I get to the store, grab a shopping cart and head toward the entrance. The store is more busy than usual, everyone's picking up their last minute snacks before the game starts. Coincidentally, I see Frank go in the entrance ahead of me. It's clear he's on a mission. He's walking quickly and he's stopping and looking up every aisle. I know this because I'm following him. I'm curious to know what he's after and why he's in such a hurry. He has no idea that I'm right behind him throughout the store. He hasn't picked up anything yet, but he's looking very hard. Finally, in the last aisle he pauses and I call his name, "Frank!". He turns around quickly and looks at me with big eyes like he's surprised to see me there. "What's up?" I ask smiling.
He's practically breathless, he answers me quick like he's in a hurry, "Oh, they got me all over. I'm here, I'm going there. I'm looking for that stuff, you know that stuff you get, . . . like when somebody dies . . .?"
"Umm, like a cookie tray?" I ask. I'm trying to think of what you eat when somebody dies, but I don't know. But his question freaks me out a little bit.
He looks at me and his expression changes, like he just now realized who I am and he's come back to reality. I said "Frank, are the people back?"
"Oh . . . no, . . . no. I just came for ice cream." He just happened to be standing in front of the ice cream freezer so he grabbed a quart and said, "this is what I needed."
"Oh, okay, well, enjoy the game." I said.
"Yeah." Frank answered and walked away.
This has me worried, really worried. The hallucinations have him on a mission to buy something, who knows what. But I'm wondering what other commands he has followed or would follow in the future. I am afraid to even think about it. I can't wait to go home and tell Matt. I'm just happy that I was coincidentally there to witness it. I realize that we have to do something because this is getting serious.
The next day Matt calls a guy he knows who runs the psychiatric ward in a small private hospital near his office. He tells Luther about Frank's behavior and asks him if we could admit Frank for evaluation. Apparently, it's not easy to get in but Matt has known Luther professionally for a few years now and he tells Matt to bring Frank in through the Emergency Room next Thursday and he'll see what he can do.
We explain to Frank that we want to find out what's wrong with him and see if we can get it fixed. Frank looks back at us with the same serious expression that we are looking at him with and says "yeah, okay."
That Thursday Matt and I take Frank to the ER. It's really busy for a Thursday afternoon. We check in, do all the paperwork and soon they call us back to the triage area. They give us a gurney in the hallway because all the examining rooms are busy. Frank sits on the gurney while Matt and I stand next to him. I hear the teenage girl in the room right in front of us crying and talking on the phone to her mom. She cut her hand at school somehow and she had to get stitches. Her mom arrives about 30 minutes later, and after talking to the doctor they leave together. The next room is a woman obviously looking for drugs. I hear the doctor say to her, "I can give you Naprosyn." She starts wailing, "But doctor, I'm in alot of pain!" He tells her that he can't offer her anything else and walks away. Then she gets on her phone and starts crying to someone about how much pain she's in and complaining that the doctor won't give her anything. Matt and I look at each other skeptically. We have been just standing here in the hallway for about two hours. Matt and I are playing silly games to keep ourselves occupied while Frank just sits and stares. We play an alphabet game where we take turns going through the alphabet naming things in certain categories. First we pick rock band category. I choose AC/DC, Matt says "Beatles" I tell him that I hate the Beatles and pick Coldplay for 'c', and on it goes. After that category, we move on to tv shows, Matt begins with 'Arrested Development', then I say 'Bridezillas", then we do snack foods, movies and finally drug names before this becomes boring also.
Finally, a doctor comes over and asks why we're here. Matt explains that his brother is having hallucinations. The doctor asks Frank what his name is. He knows that. He answers "Frank . . Frank" Then he asks what day it is and Frank says it's September; it's January. The doctor asks who the president is and Frank answers "the cowboy", which is a pretty good answer for George W. The doctor tells us that they have a psych ward but it's full and he tries to get rid of us. Matt tells him that Luther told us to come today and he changes his story. He calls up to the ward and we find out that today is Luther's day off even though he told us to come today. It takes about another hour of communication between the ward and the ER before we finally get Frank up to the seventh floor. It seems the only way we got in is because Matt knows Luther though. If we were just walking in off the street, we'd be back on it by now.
I'm exhausted from sitting around doing nothing for hours. We get Frank settled and walk around the ward with him. Hopefully, he'll make friends. It looks like everyone there is about his age. They're all hanging out in a community room watching tv. Frank doesn't look like he wants to be friendly though. When we leave he goes to his room.
Luther said not to visit for a few day so Frank adjusts to life on the ward. On the third day, Matt stops by. Frank doesn't seem happy or sad to see Matt but he wants to go home. "Can we go home now?" Frank wants to know. Matt talks to the nurse to see how things are going. She says that when Frank first got there they found him hiding behind the door to his room talking to his hallucination even though he denied seeing anything. They have to coax him out of his room because he prefers to sleep all day. He hasn't interacted with anyone, but goes into other people's rooms; maybe he's lost or maybe he just doesn't know better anymore. Matt leaves and Frank asks again if he can go home. "No Frank, you have to stay here for a couple weeks until they figure out what's wrong." Matt explains. "I'll be back tomorrow." with that, Matt leaves.
Frank's behavior doesn't improve. The staff try to get Frank involved in ward activities, but he doesn't participate. Even the other patients try to get Frank involved but he doesn't care to interact. Someone was missing their radio and it was found in Frank' room. That didn't make him very popular. Every day when Matt visits, Frank asks if he can go home now. Finally, after two and a half weeks, they discharge Frank with a diagnosis; Frontotemporal Dementia. The psychiatrist isn't surprised that Frank is in the middle of a divorce. He said that many marriages of FTD sufferers end in divorce before they even realize they have the disease, mostly due to the personality changes. The emotional disconnection with the disease is perceived as lack of commitment to the relationship but the reality is that the person who has the disease doesn't realize that any changes have occurred.
The dementia diagnosis is bad news because now we have no psychiatric options open to us for Frank's care. Frontotemporal Dementia is considered a medical condition so we only have nursing homes to explore now. Frank is immediately discharged from the psych ward into our care because he doesn't have a psychiatric condition. I try to explain to Matt that we shouldn't take him back. We should tell the hospital that we can't take care of him and let them figure it out, but Matt insists that we can all pitch in and see that Frank is cared for. I don't know why no one ever listens to me.
I get to the store, grab a shopping cart and head toward the entrance. The store is more busy than usual, everyone's picking up their last minute snacks before the game starts. Coincidentally, I see Frank go in the entrance ahead of me. It's clear he's on a mission. He's walking quickly and he's stopping and looking up every aisle. I know this because I'm following him. I'm curious to know what he's after and why he's in such a hurry. He has no idea that I'm right behind him throughout the store. He hasn't picked up anything yet, but he's looking very hard. Finally, in the last aisle he pauses and I call his name, "Frank!". He turns around quickly and looks at me with big eyes like he's surprised to see me there. "What's up?" I ask smiling.
He's practically breathless, he answers me quick like he's in a hurry, "Oh, they got me all over. I'm here, I'm going there. I'm looking for that stuff, you know that stuff you get, . . . like when somebody dies . . .?"
"Umm, like a cookie tray?" I ask. I'm trying to think of what you eat when somebody dies, but I don't know. But his question freaks me out a little bit.
He looks at me and his expression changes, like he just now realized who I am and he's come back to reality. I said "Frank, are the people back?"
"Oh . . . no, . . . no. I just came for ice cream." He just happened to be standing in front of the ice cream freezer so he grabbed a quart and said, "this is what I needed."
"Oh, okay, well, enjoy the game." I said.
"Yeah." Frank answered and walked away.
This has me worried, really worried. The hallucinations have him on a mission to buy something, who knows what. But I'm wondering what other commands he has followed or would follow in the future. I am afraid to even think about it. I can't wait to go home and tell Matt. I'm just happy that I was coincidentally there to witness it. I realize that we have to do something because this is getting serious.
The next day Matt calls a guy he knows who runs the psychiatric ward in a small private hospital near his office. He tells Luther about Frank's behavior and asks him if we could admit Frank for evaluation. Apparently, it's not easy to get in but Matt has known Luther professionally for a few years now and he tells Matt to bring Frank in through the Emergency Room next Thursday and he'll see what he can do.
We explain to Frank that we want to find out what's wrong with him and see if we can get it fixed. Frank looks back at us with the same serious expression that we are looking at him with and says "yeah, okay."
That Thursday Matt and I take Frank to the ER. It's really busy for a Thursday afternoon. We check in, do all the paperwork and soon they call us back to the triage area. They give us a gurney in the hallway because all the examining rooms are busy. Frank sits on the gurney while Matt and I stand next to him. I hear the teenage girl in the room right in front of us crying and talking on the phone to her mom. She cut her hand at school somehow and she had to get stitches. Her mom arrives about 30 minutes later, and after talking to the doctor they leave together. The next room is a woman obviously looking for drugs. I hear the doctor say to her, "I can give you Naprosyn." She starts wailing, "But doctor, I'm in alot of pain!" He tells her that he can't offer her anything else and walks away. Then she gets on her phone and starts crying to someone about how much pain she's in and complaining that the doctor won't give her anything. Matt and I look at each other skeptically. We have been just standing here in the hallway for about two hours. Matt and I are playing silly games to keep ourselves occupied while Frank just sits and stares. We play an alphabet game where we take turns going through the alphabet naming things in certain categories. First we pick rock band category. I choose AC/DC, Matt says "Beatles" I tell him that I hate the Beatles and pick Coldplay for 'c', and on it goes. After that category, we move on to tv shows, Matt begins with 'Arrested Development', then I say 'Bridezillas", then we do snack foods, movies and finally drug names before this becomes boring also.
Finally, a doctor comes over and asks why we're here. Matt explains that his brother is having hallucinations. The doctor asks Frank what his name is. He knows that. He answers "Frank . . Frank" Then he asks what day it is and Frank says it's September; it's January. The doctor asks who the president is and Frank answers "the cowboy", which is a pretty good answer for George W. The doctor tells us that they have a psych ward but it's full and he tries to get rid of us. Matt tells him that Luther told us to come today and he changes his story. He calls up to the ward and we find out that today is Luther's day off even though he told us to come today. It takes about another hour of communication between the ward and the ER before we finally get Frank up to the seventh floor. It seems the only way we got in is because Matt knows Luther though. If we were just walking in off the street, we'd be back on it by now.
I'm exhausted from sitting around doing nothing for hours. We get Frank settled and walk around the ward with him. Hopefully, he'll make friends. It looks like everyone there is about his age. They're all hanging out in a community room watching tv. Frank doesn't look like he wants to be friendly though. When we leave he goes to his room.
Luther said not to visit for a few day so Frank adjusts to life on the ward. On the third day, Matt stops by. Frank doesn't seem happy or sad to see Matt but he wants to go home. "Can we go home now?" Frank wants to know. Matt talks to the nurse to see how things are going. She says that when Frank first got there they found him hiding behind the door to his room talking to his hallucination even though he denied seeing anything. They have to coax him out of his room because he prefers to sleep all day. He hasn't interacted with anyone, but goes into other people's rooms; maybe he's lost or maybe he just doesn't know better anymore. Matt leaves and Frank asks again if he can go home. "No Frank, you have to stay here for a couple weeks until they figure out what's wrong." Matt explains. "I'll be back tomorrow." with that, Matt leaves.
Frank's behavior doesn't improve. The staff try to get Frank involved in ward activities, but he doesn't participate. Even the other patients try to get Frank involved but he doesn't care to interact. Someone was missing their radio and it was found in Frank' room. That didn't make him very popular. Every day when Matt visits, Frank asks if he can go home now. Finally, after two and a half weeks, they discharge Frank with a diagnosis; Frontotemporal Dementia. The psychiatrist isn't surprised that Frank is in the middle of a divorce. He said that many marriages of FTD sufferers end in divorce before they even realize they have the disease, mostly due to the personality changes. The emotional disconnection with the disease is perceived as lack of commitment to the relationship but the reality is that the person who has the disease doesn't realize that any changes have occurred.
The dementia diagnosis is bad news because now we have no psychiatric options open to us for Frank's care. Frontotemporal Dementia is considered a medical condition so we only have nursing homes to explore now. Frank is immediately discharged from the psych ward into our care because he doesn't have a psychiatric condition. I try to explain to Matt that we shouldn't take him back. We should tell the hospital that we can't take care of him and let them figure it out, but Matt insists that we can all pitch in and see that Frank is cared for. I don't know why no one ever listens to me.
Monday, January 7, 2013
37: FTD Hallucinations Become Dangerous
"Let's play Apples to Apples" my son Blaise announced after Christmas dinner was cleaned up. That's one of our family's favorite games. Matt and me, my parents, my brother, our friend Joe, Frank, and my three sons all sat down at the table again and surrounded the game cards. Apples to Apples is a fun word game that just about anyone can play, except Frank. There are noun cards and adjective cards. The chosen judge for the round turns over an adjective and the players select a noun card from the hand they are dealt that they believe best exemplifies the adjective. Sometimes it's funny, sometimes it's clever, and sometimes you just don't have anything and you just have to throw something out. The judge shuffles the cards so he doesn't know who submitted which card and then decides which noun they like best. The winner is the person who has the most winning adjective cards at the end.
I sat next to Frank. We were all throwing in cards, making jokes and laughing about clever connections, Frank just sat there holding his cards. I told him, "Frank just throw one in, it doesn't matter what it says." He began sorting the cards in his hand, because he really didn't know what he was supposed to do, so I picked one for him and threw it in. Somehow, Frank won that round. That continued for the entire game. He never caught on to what we were doing and just sat there holding his cards while I threw in a selection for him. We played about ten rounds in all and unbelievably, Frank ended up being the winner of the entire game. It was hard to tell if he comprehended that he won because he just sat there with a blank look on his face.
After the game was over, Matt said "Frank, you look tired. Why don't you get going."
"Yeah . . . yeah" was Frank's answer as he slowly got up and put on his coat.
He was still driving at this point. As bad as he seemed, he could still navigate and still knew how to drive well. I took photographs throughout the day, but Frank never looked up and smiled like he would have even six months ago. In 2006, he was still working at the phone store. In 2009, he brought Midge to Blaise's graduation party. He was beginning to become forgetful, but could still carry on a conversation and seemed to have a great time. In June 2010, just one year later, we had a graduation party for Brett. Frank came and sat among his aunt and uncle and brother, but he spoke very little. Now only six months later he has become a zombie. He's moving through life but there doesn't seem to be much life left in him.
The following week we had an ice storm. They were predicting dangerous road conditions and a Code Blue Weather Emergency condition. A Code Blue is called when winter weather conditions pose a threat of serious harm or death to those without shelter. Matt got home from work at 7:30 that evening, ate dinner and after seeing the weather forecast thought he had better check on Frank and bring him some groceries so he wouldn't have to go out. I packed up our leftover dinner for him and Matt slowly made his way over to Frank's house. The ice storm was beginning, the roads were becoming slippery and the wind had turned gusty making a very uncomfortable trip out. When Matt pulled up in front of the house around 8:30 pm he was shocked to find Frank standing outside in the driveway near his car. Alarmed, Matt jumped out of his car and called, "Frank! What are you doing out here?"
"Did you see him? He's running away." Frank answered.
"Frank, there's nobody here." Matt said.
"He told me I wasn't allowed inside. He told me I was going to be arrested." Frank continued. He seemed surprised that it wasn't real.
"C'mon Frank, let's go inside." Matt said, taking Frank by the shoulder.
"They're in there." Frank said.
"No Frank, there's nobody there, c'mon, let's go in." Matt said reassuringly. "Do you see anyone?" Matt asked.
"Umm, no, not now." Frank answered.
"Do you see them alot? Matt asked.
"Uh, yeah they're here all the time. The hillbillies keep telling me that I'm in trouble and I'm going to get arrested, and there's servants and some kids. They told me that I wasn't allowed in here." Frank said plainly.
"What were you doing outside?" Matt asked.
"I was going to stay in my car with my gear." Frank answered.
Matt noticed that Frank's car had been filled with a sleeping bag and blankets, and suddenly it made sense. He wondered how many times the hallucinations made Frank sleep outside.
"Are you afraid of them?" Matt asked.
"No." Frank said. But it's hard to imagine that it wouldn't be frightening.
"Uh, can I stay with you?" Frank asked.
"No Frank, you can't stay with me." Matt said. Matt and I have discussed having Frank live with us, but I felt that I needed to put my children first and I would fear for their safety having Frank in our home. Not that he would intentionally cause us harm, but he may unintentionally cause something like a cooking fire, or react dangerously to a hallucination.
He gave Frank something to help him sleep and tucked him in bed before he left.
Matt came home and told me what he witnessed at Frank's house. He was whispering so as not to alarm Joey our youngest child, but Brett couldn't help but overhear, because everything seems more interesting when it's being whispered. Brett has been our 'funny' child ever since he was a baby. When he was about a year old, before he could even talk, he put his chubby little finger inside a brass fish's mouth and said while giggling with dimples showing and bright eyes flashing, "Ow . . oww!"
His great sense of humor doesn't always have great timing though. After Matt finished telling us what happened, Brett began retelling the story. As he held an imaginary serving tray aloft, he regally announced "Your moonshine, sir." I stifled a giggle while Matt looked sternly at Brett and said, "You know, that's just not funny." It became his anthem though whenever we talked about this new stage in Frank's condition; the children thought Frank had become quite amusing.
Matt and I both attempted to discuss the hallucinations with Frank's psychiatrist again, and again we got the runaround from the receptionist and then the same apathetic response from the psychiatrist. Matt called another mental health clinic near his office and got Frank an appointment. It was farther for Frank to drive but he was familiar with the area. They were much more cooperative and included Matt in Frank's treatment plan. They started him on Abilify for the hallucinations, and enrolled him in a twice weekly group session, but we still did not know why this was happening.
About a week later there was another snow storm, a blizzard actually. I left work a little early at 4:00 to get a jump on traffic because the snow had become heavy already and they were predicting at least a foot of snow for our area. The first thing I did when I got home was change into something warm and cozy and get the fireplace started. The snow was already about eight inches on my patio. It was a perfect night to make some good comfort food for dinner. I was busy in the kitchen slicing beef for my famous Beef Stroganoff over egg noodles and worrying about Frank when I heard tapping on my back door. For a second I was startled, thinking who would be out on a night like this? Then I thought, Frank, that's who. I looked out and there's Frank standing in front of my door covered in snow with no coat, just a zip up sweat shirt on. I threw open the door and said "Frank, what are you doing out in this weather?"
"Uh, I lost my keys." Frank replied. He just walked five miles through deep snow in the dark. I quickly handed him a towel and some warm, dry clothes to change into. He seemed relieved to have made it to this refuge. He had a nice meal with us and I just kept chattering on about anything I could think of to fill in the space. Eventually, I ran out of things to say and I remembered that I had one of his mother's old recipe boxes in my cabinet. I said, "Frank, how about if we make one of your mom's recipes?" I pulled out the box and we began sorting through old, yellowed index cards in Terry's familiar handwriting. I took the box from her house after she passed away hoping to find her meatloaf recipe. Hers was the best meatloaf I've ever had and I'm still hunting for a recipe that will become my signature meatloaf. Alas, I haven't found her meatloaf but there's a bread pudding recipe that seems pretty quick and simple that we settle on. I send Frank in to relax in front of the fire and the television while I whip up the dessert. In no time at all we were savoring warm bread pudding with vanilla sauce, one of my favorite things. Who knew it was so easy? I brought Frank an extra large portion, and sat down with him in the family room while we waited for Matt to come home. I was happy to make him something that reminded him of his mom who we were missing so much. He enjoyed it and enjoyed it some more. He went in the kitchen and helped himself to three more servings until it was all gone. He really enjoyed good food, but I also learned that people suffering with FTD often over-indulge in food and do not realize when to stop.
Matt drove Frank home later that evening and used his spare key to let Frank in. We couldn't help but wonder if he really lost his key or if the hillbillies told him to leave. Frank denied seeing the hillbillies and servants after starting Abilify, but I had reason to believe he wasn't being truthful.
I sat next to Frank. We were all throwing in cards, making jokes and laughing about clever connections, Frank just sat there holding his cards. I told him, "Frank just throw one in, it doesn't matter what it says." He began sorting the cards in his hand, because he really didn't know what he was supposed to do, so I picked one for him and threw it in. Somehow, Frank won that round. That continued for the entire game. He never caught on to what we were doing and just sat there holding his cards while I threw in a selection for him. We played about ten rounds in all and unbelievably, Frank ended up being the winner of the entire game. It was hard to tell if he comprehended that he won because he just sat there with a blank look on his face.
After the game was over, Matt said "Frank, you look tired. Why don't you get going."
"Yeah . . . yeah" was Frank's answer as he slowly got up and put on his coat.
He was still driving at this point. As bad as he seemed, he could still navigate and still knew how to drive well. I took photographs throughout the day, but Frank never looked up and smiled like he would have even six months ago. In 2006, he was still working at the phone store. In 2009, he brought Midge to Blaise's graduation party. He was beginning to become forgetful, but could still carry on a conversation and seemed to have a great time. In June 2010, just one year later, we had a graduation party for Brett. Frank came and sat among his aunt and uncle and brother, but he spoke very little. Now only six months later he has become a zombie. He's moving through life but there doesn't seem to be much life left in him.
The following week we had an ice storm. They were predicting dangerous road conditions and a Code Blue Weather Emergency condition. A Code Blue is called when winter weather conditions pose a threat of serious harm or death to those without shelter. Matt got home from work at 7:30 that evening, ate dinner and after seeing the weather forecast thought he had better check on Frank and bring him some groceries so he wouldn't have to go out. I packed up our leftover dinner for him and Matt slowly made his way over to Frank's house. The ice storm was beginning, the roads were becoming slippery and the wind had turned gusty making a very uncomfortable trip out. When Matt pulled up in front of the house around 8:30 pm he was shocked to find Frank standing outside in the driveway near his car. Alarmed, Matt jumped out of his car and called, "Frank! What are you doing out here?"
"Did you see him? He's running away." Frank answered.
"Frank, there's nobody here." Matt said.
"He told me I wasn't allowed inside. He told me I was going to be arrested." Frank continued. He seemed surprised that it wasn't real.
"C'mon Frank, let's go inside." Matt said, taking Frank by the shoulder.
"They're in there." Frank said.
"No Frank, there's nobody there, c'mon, let's go in." Matt said reassuringly. "Do you see anyone?" Matt asked.
"Umm, no, not now." Frank answered.
"Do you see them alot? Matt asked.
"Uh, yeah they're here all the time. The hillbillies keep telling me that I'm in trouble and I'm going to get arrested, and there's servants and some kids. They told me that I wasn't allowed in here." Frank said plainly.
"What were you doing outside?" Matt asked.
"I was going to stay in my car with my gear." Frank answered.
Matt noticed that Frank's car had been filled with a sleeping bag and blankets, and suddenly it made sense. He wondered how many times the hallucinations made Frank sleep outside.
"Are you afraid of them?" Matt asked.
"No." Frank said. But it's hard to imagine that it wouldn't be frightening.
"Uh, can I stay with you?" Frank asked.
"No Frank, you can't stay with me." Matt said. Matt and I have discussed having Frank live with us, but I felt that I needed to put my children first and I would fear for their safety having Frank in our home. Not that he would intentionally cause us harm, but he may unintentionally cause something like a cooking fire, or react dangerously to a hallucination.
He gave Frank something to help him sleep and tucked him in bed before he left.
Matt came home and told me what he witnessed at Frank's house. He was whispering so as not to alarm Joey our youngest child, but Brett couldn't help but overhear, because everything seems more interesting when it's being whispered. Brett has been our 'funny' child ever since he was a baby. When he was about a year old, before he could even talk, he put his chubby little finger inside a brass fish's mouth and said while giggling with dimples showing and bright eyes flashing, "Ow . . oww!"
His great sense of humor doesn't always have great timing though. After Matt finished telling us what happened, Brett began retelling the story. As he held an imaginary serving tray aloft, he regally announced "Your moonshine, sir." I stifled a giggle while Matt looked sternly at Brett and said, "You know, that's just not funny." It became his anthem though whenever we talked about this new stage in Frank's condition; the children thought Frank had become quite amusing.
Matt and I both attempted to discuss the hallucinations with Frank's psychiatrist again, and again we got the runaround from the receptionist and then the same apathetic response from the psychiatrist. Matt called another mental health clinic near his office and got Frank an appointment. It was farther for Frank to drive but he was familiar with the area. They were much more cooperative and included Matt in Frank's treatment plan. They started him on Abilify for the hallucinations, and enrolled him in a twice weekly group session, but we still did not know why this was happening.
About a week later there was another snow storm, a blizzard actually. I left work a little early at 4:00 to get a jump on traffic because the snow had become heavy already and they were predicting at least a foot of snow for our area. The first thing I did when I got home was change into something warm and cozy and get the fireplace started. The snow was already about eight inches on my patio. It was a perfect night to make some good comfort food for dinner. I was busy in the kitchen slicing beef for my famous Beef Stroganoff over egg noodles and worrying about Frank when I heard tapping on my back door. For a second I was startled, thinking who would be out on a night like this? Then I thought, Frank, that's who. I looked out and there's Frank standing in front of my door covered in snow with no coat, just a zip up sweat shirt on. I threw open the door and said "Frank, what are you doing out in this weather?"
"Uh, I lost my keys." Frank replied. He just walked five miles through deep snow in the dark. I quickly handed him a towel and some warm, dry clothes to change into. He seemed relieved to have made it to this refuge. He had a nice meal with us and I just kept chattering on about anything I could think of to fill in the space. Eventually, I ran out of things to say and I remembered that I had one of his mother's old recipe boxes in my cabinet. I said, "Frank, how about if we make one of your mom's recipes?" I pulled out the box and we began sorting through old, yellowed index cards in Terry's familiar handwriting. I took the box from her house after she passed away hoping to find her meatloaf recipe. Hers was the best meatloaf I've ever had and I'm still hunting for a recipe that will become my signature meatloaf. Alas, I haven't found her meatloaf but there's a bread pudding recipe that seems pretty quick and simple that we settle on. I send Frank in to relax in front of the fire and the television while I whip up the dessert. In no time at all we were savoring warm bread pudding with vanilla sauce, one of my favorite things. Who knew it was so easy? I brought Frank an extra large portion, and sat down with him in the family room while we waited for Matt to come home. I was happy to make him something that reminded him of his mom who we were missing so much. He enjoyed it and enjoyed it some more. He went in the kitchen and helped himself to three more servings until it was all gone. He really enjoyed good food, but I also learned that people suffering with FTD often over-indulge in food and do not realize when to stop.
Matt drove Frank home later that evening and used his spare key to let Frank in. We couldn't help but wonder if he really lost his key or if the hillbillies told him to leave. Frank denied seeing the hillbillies and servants after starting Abilify, but I had reason to believe he wasn't being truthful.
Terry's Brown Sugar Bread Pudding
2 cups soft 1/2" bread cubes
1 1/2 cups milk
1/2 cup brown sugar
1/4 tsp salt
1/2 tsp cinnamon
2 eggs beaten
1 tsp vanilla
1 tbsp butter
Mix all ingredients except butter and pour into greased one quart casserole. Dot butter on top. Bake in slow oven (350') for one hour.
Friday, January 4, 2013
36: My Cousin Angelo
"WooHoo, hey Frank Buddy, you see that play?" Sheldon Brown just picked up a fumble from the Giants for a 60 yard touchdown and my cousin Angelo was going crazy. Angelo is my mom's sister's son. He's a big teddy bear of a guy and a huge Eagles fan. Matt had Frank and Angelo over to watch the game. "Uh, no . . . what?" Frank said. "Yo, Matt rewind that and show Frank that play again." Angelo shouted. Matt got the remote for the DVR and played the fumble recovery and touchdown again. "See that Frank? That's my guy!" Angelo is crazy excited not only because he loves the Eagles, but because he's got Brown on his Fantasy Football team.
"There's some kids sleeping on the floor over there." Frank said. ". . . and there's some . . . uh, hillbillies over there, and there's a servant." Frank said looking around his living room.
Angelo's being really nice to Frank. Anyone can see that Frank is not following the game, but Matt and Angelo are making him feel like one of the guys. Frank used to live and breathe football. At halftime when Matt and Angelo got up to eat and use the bathroom, Frank thought the game was over and was getting ready to leave. "What, you cold there Frank? Why you got your coat on already? Here have a cannoli, my wife made 'em. Not bad for a medigon." That's Italian slang for American, or anybody that's not Italian. Angelo's wife Betty is English, but she can cook Italian with the best. She stayed home with their five kids tonight; she knows better than to watch football with these guys. There's always alot of shouting and rude trash talk.
Angelo is a real estate agent but he used to be a lawyer. Not everyone is cut out to practice law. Lawyers are almost four times more likely to suffer depression than the average person. Angelo used to work for a large firm, but he just suddenly quit one day and didn't work for several years. Then he got into real estate. It seems to suit him better. Matt still asks him for advice about Frank's case though. Angelo is the one who told Matt to fight letting Nicholas Zinc out of Frank's case. Of course, that didn't turn out too well. Angelo couldn't believe that the judge let him out of the case. He said, "I don't know what kind of kangaroo court that Delaware County is. That bitch didn't know the law from her ass. I mean it Matt, that wouldn't have happened in Montgomery County or Philadelphia. Lotta strange stuff going on in Delaware County." Angelo was mad.
"C'mon Frank, I'll drive you home." Angelo said. It was on his way home. Matt didn't want Frank driving home after the game so he picked him up early. Angelo pulled up to Frank's house and went inside with him to turn on the lights and make sure he was okay.
Angelo said, "Okay Frank, I'm gonna go now, you okay?"
Frank looked kind of frightened and said to Angelo, "There's other people here."
"No Frank, there's nobody else." Angelo said.
"There's some kids sleeping on the floor over there." Frank said. ". . . and there's some . . . uh, hillbillies over there, and there's a servant." Frank said looking around his living room.
"Aww, geez Frank . . . no, there's nobody there." Angelo said looking around like he was trying to see them too. "Yo everybody, get out of here, this is Frank's house!" Angelo yelled. "Did they leave? he asked.
"Yeah, they're gone." Frank answered.
Angelo hated to leave Frank but he had to get home and Frank looked really tired. "Frank, look, just go to bed, you look tired buddy."
"Yeah." Frank answered and turned down the hall to his bedroom.
Angelo quietly let himself out and whispered to himself, "Holy shit."
35: Threats and Resignation
"Nicholas, it's Matt Layton." Matt was calling Nicholas to find out what was going on with Frank's case. The divorce has been in progress for five years. Kat won't sign the final divorce papers, refuses to agree to any settlement, and despite moving another man into her home and keeping Frank away with a Protection from Abuse Order, has continued to blame Frank for holding the divorce up. Matt and I decided that since Kat and Frank are still legally married that she should begin to shoulder some of the burden that we have been taking on by ourselves. Frank needs someone to look in on him regularly, possibly a visiting nurse, or Visiting Angels, which is a service where people come over and help run errands, help cook or just sit and watch tv with someone. Frank's life is beginning to consume ours. He is all we talk about these days, he is all we think about and almost every evening we go check on him. I think that if he were still married and living in a family home with his children, who would provide mental stimulation like activity and conversation, he would be doing much better and his disease would have progressed more slowly.
"Matt, I've been planning on calling you. I got a call from Mulva Fargo." Nicholas said.
"I hope it's good news Nicholas." Matt said hopefully.
"Actually, no, it's not. Kat says that Frank was over at their house. As you know, she has a PFA order. Their son, Eric says Frank walked up to the back door and said to him, "Is she mad?" to which Eric responded. "Dad, you're not supposed to be here." Frank handed Eric a bag of groceries and turned and walked away. They're using this as a bargaining chip, Matt. Mulva says they will have Frank arrested for violating the PFA if we don't drop the alimony case. I do not believe they are bluffing Matt." Nicholas said seriously.
"You've got to be kidding. Frank was obsessed with them for a while. He was over our house every day asking about them. He was worried that they didn't have food, so I guess this is possible. Still, I wouldn't put it past them to make the whole thing up either." Matt said.
"Yeah, but then you would be calling Eric a liar, and that's not going to go over too well." Nicholas explained.
"Right, I see your point, but still, we need that spousal support. Frank needs it, they're still married and I think we'll get it. Any word on when the hearing is?" Matt asked.
"Matt, no. That's also what I wanted to talk to you about. I just can't do this anymore." Nicholas stated.
"What do you mean?" Matt asked.
"You know, I was just doing a friend a favor when I got involved in this case. I don't even do divorce. It's been four years and I'm just tired. I can't do it anymore." Nicholas said sadly.
"Nick, it's almost over, we got 'em now. She's going to want to end this quickly now that Frank's disabled." Matt tried to convince Nicholas.
"Matt, you don't get it, . . . this thing will never be over. They'll fight it forever and all the cards are in their favor. How many times have I been to that courthouse for a hearing and they've changed the date on me with no notice? How many times have I not received documents I should have received? How many transcripts have been accidentally lost? I don't know what Fargo has on them, but the employees at the courthouse do her bidding. They'll do anything she tells them to and there's nothing I can do. Just look at this alimony hearing. It should have been scheduled months ago but I haven't even gotten a date yet. That's the kind of power she has there. Matt, I'm tired, and I just can't do it anymore. I can recommend another attorney who could take over. I'll hand over everything I have, but I'm out." Nicholas said straightforwardly.
"I'm sorry to hear that Nick. " Matt was stunned.
"No, I'm sorry. I really wish I could have ended this, but they'll never settle it and I have to move on." Nicholas went on.
"Now what?" Matt wondered. Frank has no money to pay another lawyer. We could call the woman Nicholas recommended but Frank wouldn't be able to pay her. As it was, he hadn't even gotten a bill from Nicholas for his years of work yet.
In order for Nicholas to resign the case, he had to file with the court. Matt tried to contest it since Frank has aphasia and is not able to communicate his story to a new attorney; we felt that the court should force Nicholas to finish the job. We got notice of a hearing about Nicholas' resignation and went to court. The secretary said, "Oh, that's over. The judge signed it as soon as he filed it. There is no court date." "How did that happen? I need to contest it since my brother can't hire another attorney." Matt said. "Well, I guess you'll have to appeal. Once it's signed, it's over." the secretary said.
We filed the necessary papers to appeal the judge's decision to let Nicholas out of the case and waited two weeks. The judge was 45 minutes late for her first case of the day. That was the first clue that she was completely disengaged from her job. Matt tried to explain that the law states that an attorney may withdraw from a case as long as it does no harm to the client's case. The plan was to prove that Nicholas was harming Frank by not finishing the divorce. The judge interrupted every time Matt tried to speak and just kept saying over and over, "why would you want to keep an attorney that doesn't want you?" Then Matt would try to explain his position that Frank couldn't help another attorney understand the case nor pay another attorney to start over, but she obviously didn't read the brief that was prepared with the explanation and wasn't interested in anything he had to say. "I'm sorry Mr. Layton, he doesn't want to represent your brother and you can't force him to if he doesn't want to. Case dismissed." Gavel bang, click. next. you're outta here.
"Matt, I've been planning on calling you. I got a call from Mulva Fargo." Nicholas said.
"I hope it's good news Nicholas." Matt said hopefully.
"Actually, no, it's not. Kat says that Frank was over at their house. As you know, she has a PFA order. Their son, Eric says Frank walked up to the back door and said to him, "Is she mad?" to which Eric responded. "Dad, you're not supposed to be here." Frank handed Eric a bag of groceries and turned and walked away. They're using this as a bargaining chip, Matt. Mulva says they will have Frank arrested for violating the PFA if we don't drop the alimony case. I do not believe they are bluffing Matt." Nicholas said seriously.
"You've got to be kidding. Frank was obsessed with them for a while. He was over our house every day asking about them. He was worried that they didn't have food, so I guess this is possible. Still, I wouldn't put it past them to make the whole thing up either." Matt said.
"Yeah, but then you would be calling Eric a liar, and that's not going to go over too well." Nicholas explained.
"Right, I see your point, but still, we need that spousal support. Frank needs it, they're still married and I think we'll get it. Any word on when the hearing is?" Matt asked.
"Matt, no. That's also what I wanted to talk to you about. I just can't do this anymore." Nicholas stated.
"What do you mean?" Matt asked.
"You know, I was just doing a friend a favor when I got involved in this case. I don't even do divorce. It's been four years and I'm just tired. I can't do it anymore." Nicholas said sadly.
"Nick, it's almost over, we got 'em now. She's going to want to end this quickly now that Frank's disabled." Matt tried to convince Nicholas.
"Matt, you don't get it, . . . this thing will never be over. They'll fight it forever and all the cards are in their favor. How many times have I been to that courthouse for a hearing and they've changed the date on me with no notice? How many times have I not received documents I should have received? How many transcripts have been accidentally lost? I don't know what Fargo has on them, but the employees at the courthouse do her bidding. They'll do anything she tells them to and there's nothing I can do. Just look at this alimony hearing. It should have been scheduled months ago but I haven't even gotten a date yet. That's the kind of power she has there. Matt, I'm tired, and I just can't do it anymore. I can recommend another attorney who could take over. I'll hand over everything I have, but I'm out." Nicholas said straightforwardly.
"I'm sorry to hear that Nick. " Matt was stunned.
"No, I'm sorry. I really wish I could have ended this, but they'll never settle it and I have to move on." Nicholas went on.
"Now what?" Matt wondered. Frank has no money to pay another lawyer. We could call the woman Nicholas recommended but Frank wouldn't be able to pay her. As it was, he hadn't even gotten a bill from Nicholas for his years of work yet.
In order for Nicholas to resign the case, he had to file with the court. Matt tried to contest it since Frank has aphasia and is not able to communicate his story to a new attorney; we felt that the court should force Nicholas to finish the job. We got notice of a hearing about Nicholas' resignation and went to court. The secretary said, "Oh, that's over. The judge signed it as soon as he filed it. There is no court date." "How did that happen? I need to contest it since my brother can't hire another attorney." Matt said. "Well, I guess you'll have to appeal. Once it's signed, it's over." the secretary said.
We filed the necessary papers to appeal the judge's decision to let Nicholas out of the case and waited two weeks. The judge was 45 minutes late for her first case of the day. That was the first clue that she was completely disengaged from her job. Matt tried to explain that the law states that an attorney may withdraw from a case as long as it does no harm to the client's case. The plan was to prove that Nicholas was harming Frank by not finishing the divorce. The judge interrupted every time Matt tried to speak and just kept saying over and over, "why would you want to keep an attorney that doesn't want you?" Then Matt would try to explain his position that Frank couldn't help another attorney understand the case nor pay another attorney to start over, but she obviously didn't read the brief that was prepared with the explanation and wasn't interested in anything he had to say. "I'm sorry Mr. Layton, he doesn't want to represent your brother and you can't force him to if he doesn't want to. Case dismissed." Gavel bang, click. next. you're outta here.
Thursday, January 3, 2013
34: FTD Behavioral Issues
"Hello, Mr. Layton, this is Trans-Port. Uhh . . . we had a situation today with your brother . . . and, uhh, we won't be able to provide transportation for him any longer." The dispatcher from the transportation service called about three months into Frank's cognitive rehab. It was a really good idea. Matt would have done anything to help Frank, but this just wasn't working. Frank hated being there. He wasn't learning anything. The more they tried to teach him, the more confused and disoriented he became. He would have the guard at the desk call and ask us to come pick him up. He had to wait a little while for Trans-Port to come get him and he would become impatient, or maybe he just forgot they were coming. He just knew he wanted to go home.
"Oh no, what happened?" Matt asked worriedly. "Well, your brother kept taking his safety harness off. It's a requirement to remain buckled in at all times while the bus is moving." The dispatcher explained.
"Hmm, I wonder why he did that?" Matt puzzled.
"Well, I don't know but the driver had to pull over and go back and strap him in twice on the way back. Then the third time your brother tried to jump off the bus while it was moving. The driver had to physically restrain him and the police had to be called." the dispatcher explained calmly despite the dramatic events.
"Oh, I'm so sorry. I don't know why he would do that." Matt apologized.
"Mr. Layton, it's a safety issue. We have to consider the safety of our driver, the other passengers and other vehicles on the road. We just can't take a chance again."
"I understand, I'm very sorry this happened." Matt apologized again.
Matt went to visit Frank at home that evening after work. "Frank, what happened today?"
"The cops came." was all Frank said.
"Frank, why did you try to jump off the bus?" Matt asked crossly.
"I wanted to go home." Frank said simply.
Frank had forgotten how to use his cell phone, so there wasn't much use in calling him. He didn't answer. On one of his shopping binges, he bought a new cell phone. Even Matt and I didn't know how to use it though. Frank couldn't remember where he bought it so Matt had to make some phone calls to track down the store he bought it at so he could return it. He exchanged it for a basic phone that was easy to use. We don't know what he did with his old phone that he knew how to use, it was lost and forgotten somewhere like so many things these days. He just couldn't learn to use the new phone. This is a guy that worked at a phone store for years and he couldn't operate the most basic phone they sell. I showed him the two buttons, Contacts and Call. To simplify it I erased the fifty contacts he had in there and left my home phone, cell phone, Matt's work, his aunt and uncle and two brothers. He tried over and over and just couldn't remember how to make a call. "Just keep trying Frank, you'll get it." I said reassuringly, but I was becoming doubtful after watching him try so intently and failing. He did know that I erased his contacts. He said to me, "they're missing, the other things, they're missing." I took me a few minutes to realize that he wanted all his old contacts back in there. They're probably people he worked with years ago that he was hanging on to. The next time I looked at his phone he had them all back in there. He must have gone back to the phone store and had them put back in again.
Matt called the rehab nurse that was working with Frank to give her the bad news that he wouldn't be able to attend any longer. At first she tried to convince Matt that it was important for Frank to continue with therapy. Then he asked her if she thought Frank had made any progress and she had to admit that she wasn't getting anywhere with him at all and wished him luck. We still didn't know that Frank had Frontotemporal Dementia. Despite still seeing a psychiatrist monthly, a medical doctor for high blood sugar and blood pressure, and the rehab hospital, no one came up with a new diagnosis or treatment.
Matt called the mental health clinic that Frank was attending to speak to his psychiatrist about Frank's mental and behavioral decline.
"Are you the patient?" asked the receptionist.
"No, I'm his brother, but I wanted to speak to Dr. Simmons about my brother." Matt responded.
"No, sorry, doctor is not allowed to discuss anyone's case." The receptionist said shortly.
"That's fine, I won't discuss his case. I just want to give the doctor some information." Matt said.
"Yah, that would be discussing the case." The receptionist reiterated.
"Could you just ask him to call me?"Matt restated.
It took three days and another request for the psychiatrist to call back. He wasn't very interested in what Matt had to say. The doctor said that unless Matt was guardian, he could not discuss Frank's case with him.
"Where is this alimony hearing?" I wondered. "We could use some help here."
"Oh no, what happened?" Matt asked worriedly. "Well, your brother kept taking his safety harness off. It's a requirement to remain buckled in at all times while the bus is moving." The dispatcher explained.
"Hmm, I wonder why he did that?" Matt puzzled.
"Well, I don't know but the driver had to pull over and go back and strap him in twice on the way back. Then the third time your brother tried to jump off the bus while it was moving. The driver had to physically restrain him and the police had to be called." the dispatcher explained calmly despite the dramatic events.
"Oh, I'm so sorry. I don't know why he would do that." Matt apologized.
"Mr. Layton, it's a safety issue. We have to consider the safety of our driver, the other passengers and other vehicles on the road. We just can't take a chance again."
"I understand, I'm very sorry this happened." Matt apologized again.
Matt went to visit Frank at home that evening after work. "Frank, what happened today?"
"The cops came." was all Frank said.
"Frank, why did you try to jump off the bus?" Matt asked crossly.
"I wanted to go home." Frank said simply.
Frank had forgotten how to use his cell phone, so there wasn't much use in calling him. He didn't answer. On one of his shopping binges, he bought a new cell phone. Even Matt and I didn't know how to use it though. Frank couldn't remember where he bought it so Matt had to make some phone calls to track down the store he bought it at so he could return it. He exchanged it for a basic phone that was easy to use. We don't know what he did with his old phone that he knew how to use, it was lost and forgotten somewhere like so many things these days. He just couldn't learn to use the new phone. This is a guy that worked at a phone store for years and he couldn't operate the most basic phone they sell. I showed him the two buttons, Contacts and Call. To simplify it I erased the fifty contacts he had in there and left my home phone, cell phone, Matt's work, his aunt and uncle and two brothers. He tried over and over and just couldn't remember how to make a call. "Just keep trying Frank, you'll get it." I said reassuringly, but I was becoming doubtful after watching him try so intently and failing. He did know that I erased his contacts. He said to me, "they're missing, the other things, they're missing." I took me a few minutes to realize that he wanted all his old contacts back in there. They're probably people he worked with years ago that he was hanging on to. The next time I looked at his phone he had them all back in there. He must have gone back to the phone store and had them put back in again.
Matt called the rehab nurse that was working with Frank to give her the bad news that he wouldn't be able to attend any longer. At first she tried to convince Matt that it was important for Frank to continue with therapy. Then he asked her if she thought Frank had made any progress and she had to admit that she wasn't getting anywhere with him at all and wished him luck. We still didn't know that Frank had Frontotemporal Dementia. Despite still seeing a psychiatrist monthly, a medical doctor for high blood sugar and blood pressure, and the rehab hospital, no one came up with a new diagnosis or treatment.
Matt called the mental health clinic that Frank was attending to speak to his psychiatrist about Frank's mental and behavioral decline.
"Are you the patient?" asked the receptionist.
"No, I'm his brother, but I wanted to speak to Dr. Simmons about my brother." Matt responded.
"No, sorry, doctor is not allowed to discuss anyone's case." The receptionist said shortly.
"That's fine, I won't discuss his case. I just want to give the doctor some information." Matt said.
"Yah, that would be discussing the case." The receptionist reiterated.
"Could you just ask him to call me?"Matt restated.
It took three days and another request for the psychiatrist to call back. He wasn't very interested in what Matt had to say. The doctor said that unless Matt was guardian, he could not discuss Frank's case with him.
"Where is this alimony hearing?" I wondered. "We could use some help here."
Wednesday, January 2, 2013
33: Rehab for FTD Symptoms
"Yo, your father there?" the caller asked when 17 year old Brett answered the phone. "Uh, let me check, hold on please." Brett was in the basement playing video games, as usual, when the phone rang. The boys don't usually answer the house phone, but this time he did. Brett had to pause his game and go look for Matt in the house. We don't have an extremely large house, but in a 3200 square foot home plus a finished basement, and an acre of trees, it might take a minute or two to find someone. That's probably why the boys don't usually answer the house phone. A few minutes later Brett picked up the phone again and said, "sorry, he's not home, could I take a message?"
"What's he doing, hiding? When he's done being scared, you tell him to call me." the thug said.
"Why would my dad be hiding from you; I don't even know who you are?" Brett said intelligently. "You tell your dad that I know what he's up to and I'm going to hire a private investigator and him and his brother are going to jail." the man said rudely.
"Well, I'm sure my dad's not hiding from you; if you tell me who you are I'll give him the message." Brett was stunned at this guy's unconscionable rudeness.
"You tell him Rich Green called."
When Brett told Matt about the "weird angry dude" that called he said aloud, "ugh! Little Dick . . . Frank now what did you do?" It was Kat's berserk, a-hole brother. Matt called him back, it was actually good timing because Matt wanted to ask about the Jeep that Frank had left in his care.
"Rich, it's Matt, my son said you called?" Matt was being calm and polite despite Rich's furious incivility, no sense adding fuel to his flame.
"Yo, your brother was over here at my shop. You tell him to stay away or I'm calling the cops. My mom saw him and she's got a bad heart. If anything happens to her, I swear to God, it's going to be raining Rich down on him!" Matt had to keep a straight face at the thought. Frank and Rich actually had gotten into a couple brawls, with Frank easily taking Rich down both times, despite Rich being a head taller. Not that that's anything to be proud of, but it's just another day in the Green family and it's how they measure respect. "I know what you and your brother are up to. I don't know how he's on disability, but I'm going to hire a private eye and you're both going to jail." Rich threatened.
"Rich, Frank is disabled." Matt went into a long explanation of Frank's current symptoms and problems, but Rich wasn't really listening.
"Your brother owes Kat alot of money, he doesn't even pay child support. She's trying to raise those kids all by herself. He didn't even go to Frances' graduation. He didn't send a card, he didn't even call her. What the hell is wrong with that guy?" Rich said, obviously completely mislead by Kat as to the situation.
"Well, first of all, Frank was current on his child support before he went on Social Security. After he went on Social Security she actually got double child support for six months because Frank paid it and Social Security backdated and paid it too, so you're wrong there; she's actually getting more child support from Social Security than she was getting before; and as for Frances' graduation, don't you think Frank would have been there if he could have? Kat has a restraining order on him. She's had it for five years now. Frank isn't allowed to call or even send a card without being arrested." Matt was getting angry now. Did Kat lie to her own family about Frank's lack of presence or is Rich just assuming he knows things she hasn't told him. Rich is just too dumb to comprehend this whole concept anyway. He's one of those guys that after hearing an entire explanation proving he's wrong, he'll just begin spouting the same crazy accusations he said before anyway.
Matt changed the subject to the Jeep and found out that Rich couldn't fix it so he sent it out to another garage. Matt was pretty darn proud of himself for being able to locate the Jeep and get it back. Frank was thrilled. He couldn't remember anyone's name except Matt's, or the name of places he had been, or how to count money or what day it was, but he knew how to drive a 5-speed manual transmission; weird.
Since Frank was living alone now, we noticed a big decline in his cognitive skills. He was not able to learn and retain any new information, and important skills such as counting, reading, writing and language were failing him. As crazy and annoying as Midge was, the constant chattering kept Frank's brain engaged and now without that, he was deteriorating rapidly. He kept the television on constantly. We thought that would be good for him to hear conversations, but it's not actually the same as being spoken to. We discovered that he couldn't remember how to turn the television back on again if it was turned off. Matt had to go over a few times and turn it back on for him. It was slightly complicated though because it was a cable box going through a stereo receiver.
Matt made arrangements for Frank to begin going to Magee Rehab in Philadelphia. It's the kind of cognitive rehab that stroke victims receive to recover lost skills. We found that door-to-door transportation is available for disabled people to get to doctor appointments so we arranged for Frank to be picked up twice a week and taken to Philadelphia, about a one hour ride. They would begin teaching him language skills like reading, writing and finding the correct words, and useful every day skills like shopping and counting money. We were optimistic that they could help Frank hold off the progression of the new symptoms we were seeing.
"What's he doing, hiding? When he's done being scared, you tell him to call me." the thug said.
"Why would my dad be hiding from you; I don't even know who you are?" Brett said intelligently. "You tell your dad that I know what he's up to and I'm going to hire a private investigator and him and his brother are going to jail." the man said rudely.
"Well, I'm sure my dad's not hiding from you; if you tell me who you are I'll give him the message." Brett was stunned at this guy's unconscionable rudeness.
"You tell him Rich Green called."
When Brett told Matt about the "weird angry dude" that called he said aloud, "ugh! Little Dick . . . Frank now what did you do?" It was Kat's berserk, a-hole brother. Matt called him back, it was actually good timing because Matt wanted to ask about the Jeep that Frank had left in his care.
"Rich, it's Matt, my son said you called?" Matt was being calm and polite despite Rich's furious incivility, no sense adding fuel to his flame.
"Yo, your brother was over here at my shop. You tell him to stay away or I'm calling the cops. My mom saw him and she's got a bad heart. If anything happens to her, I swear to God, it's going to be raining Rich down on him!" Matt had to keep a straight face at the thought. Frank and Rich actually had gotten into a couple brawls, with Frank easily taking Rich down both times, despite Rich being a head taller. Not that that's anything to be proud of, but it's just another day in the Green family and it's how they measure respect. "I know what you and your brother are up to. I don't know how he's on disability, but I'm going to hire a private eye and you're both going to jail." Rich threatened.
"Rich, Frank is disabled." Matt went into a long explanation of Frank's current symptoms and problems, but Rich wasn't really listening.
"Your brother owes Kat alot of money, he doesn't even pay child support. She's trying to raise those kids all by herself. He didn't even go to Frances' graduation. He didn't send a card, he didn't even call her. What the hell is wrong with that guy?" Rich said, obviously completely mislead by Kat as to the situation.
"Well, first of all, Frank was current on his child support before he went on Social Security. After he went on Social Security she actually got double child support for six months because Frank paid it and Social Security backdated and paid it too, so you're wrong there; she's actually getting more child support from Social Security than she was getting before; and as for Frances' graduation, don't you think Frank would have been there if he could have? Kat has a restraining order on him. She's had it for five years now. Frank isn't allowed to call or even send a card without being arrested." Matt was getting angry now. Did Kat lie to her own family about Frank's lack of presence or is Rich just assuming he knows things she hasn't told him. Rich is just too dumb to comprehend this whole concept anyway. He's one of those guys that after hearing an entire explanation proving he's wrong, he'll just begin spouting the same crazy accusations he said before anyway.
Matt changed the subject to the Jeep and found out that Rich couldn't fix it so he sent it out to another garage. Matt was pretty darn proud of himself for being able to locate the Jeep and get it back. Frank was thrilled. He couldn't remember anyone's name except Matt's, or the name of places he had been, or how to count money or what day it was, but he knew how to drive a 5-speed manual transmission; weird.
Since Frank was living alone now, we noticed a big decline in his cognitive skills. He was not able to learn and retain any new information, and important skills such as counting, reading, writing and language were failing him. As crazy and annoying as Midge was, the constant chattering kept Frank's brain engaged and now without that, he was deteriorating rapidly. He kept the television on constantly. We thought that would be good for him to hear conversations, but it's not actually the same as being spoken to. We discovered that he couldn't remember how to turn the television back on again if it was turned off. Matt had to go over a few times and turn it back on for him. It was slightly complicated though because it was a cable box going through a stereo receiver.
Matt made arrangements for Frank to begin going to Magee Rehab in Philadelphia. It's the kind of cognitive rehab that stroke victims receive to recover lost skills. We found that door-to-door transportation is available for disabled people to get to doctor appointments so we arranged for Frank to be picked up twice a week and taken to Philadelphia, about a one hour ride. They would begin teaching him language skills like reading, writing and finding the correct words, and useful every day skills like shopping and counting money. We were optimistic that they could help Frank hold off the progression of the new symptoms we were seeing.
32: Frontotemporal Dementia Hallucinations
"Did you hear from my kids?" Frank is at my back patio door again this morning. I've become accustomed to entertaining in my pajamas, but I'm still not accustomed to seeing him standing right in front of my full glass patio door at six in the morning. He looks desperate. He's pleading me with his eyes. "No Frank, your kids don't call me. Remember, you didn't want them to talk to us?" I know it's kind of mean, but I can't help myself from rubbing it in a little bit now and then. Matt and I have become Frank's caretakers, but it wasn't long ago he wouldn't even speak to us.
We moved Frank into Terry's house. He's not quite 50 years old yet, but so far no one has said anything. I think because the residents all loved Terry so much, they're giving Frank a pass, but they all know. Apparently it's the talk of the town. Whispers at the club house, "did you see Terry's son?". . . "something's not right.". . . "I stopped to talk, but he just smiled like he had no idea." . . . "the lights and tv are blaring all night long." . . . "yeah, the lights are on but no one's home, heh heh."
There was no place for him to go. Pat is getting married and moving to Wilkes-Barre. The house is on the market, so Frank's days were numbered there and Pat didn't want to show the house with Frank's stuff all over. We did manage to find the dog a great new home. Frank seemed sad to see him go, but he wasn't taking care of the poor dog properly. A dog should not live in a cage, he should be part of someone's family. Matt placed an ad on craigslist. We had several calls, but most people couldn't afford the $300 asking price. That was kind of a test. If you can't afford to pay for the dog, you probably can't afford to keep him; hence the asking price. We had a near miss with a twenty-something girl who came with her mother. The mother didn't seem happy with her daughter's decision to buy Panser but she was going ahead anyway. She said she would bring the money on Friday morning, but she never showed up or called. A few days later a motherly-looking, 40-ish woman came to see Panser. She said it was a surprise for her kids. She wanted to know why we were getting rid of him and we explained that our brother couldn't care for him any longer. She seemed to understand and looked sadly at Frank. She went over to him and said she would take very good care of him. She told Frank about how much her children have been wanting a dog and he was going to make them very, very happy. That really brightened Frank up and he seemed more willing to give Panser to the kids he didn't know. I think in the end it was a relief for him to not have to think about taking care of him any longer. About a month later Matt got an email from the woman. It was a picture of three happy children sitting on a couch surrounding Panser who had a big happy dog smile in the middle. She said he was adjusting well after a rocky start and the kids just adore him. They renamed him Sandy. I wanted to cry. I said to Matt "he must think he died and went to heaven. Look how happy he is." "Yeah we did the right thing, we had to." Matt agreed.
"Does your son talk to them?" Frank asked again. "Well, I think they talk sometimes, not often though." We've had this same conversation just about every day. "Are my kids okay?" Frank is obsessed with knowing something about the kids. He asks constantly. It's consuming him. He heard that the large company that Kat works for was bought out by an even larger company but all the employees lost their jobs. Frank thinks that the kids are poor now, so every day I reassure him that they're fine and they have plenty of money. "Do you . . . do you think they have food?" Frank is worried, no matter how much I reassure him.
The next day, he's there again. I can't deal with this every single morning. If I scrunch down I can get the cereal and a couple bowls and bring it up to the kids in their rooms. Eventually he'll leave. But he'll be back.
Another morning, here's Frank again pacing at the door. "I saw Kat, and she was driving my Jeep." Frank was almost breathless at this new development. "No Frank, how could that be." I said.
"I'm telling you I saw her. She was driving by the place, and she slowed down and she looked right at me." Frank explained. "What place Frank, where were you?" I was getting concerned. "Over at Rich's" Frank said. "Frank, you're not supposed to be over there. Why did you go there?" I asked. Kat has a PFA order against Frank, and Rich is her hot-head, a-hole brother. This could be trouble. "Frank, do not go there." I said loudly and plainly so he could understand. "Oh, yeah, I know." Frank answered, but it was becoming increasing difficult to communicate with him and his behavior was becoming more worrisome. He's still driving, and doing it well. I've driven behind him and watched him. He looked both ways, used a turn-signal, pulled out cautiously, so he still has his keys. It's where he's going that has me concerned.
I told Matt about this Jeep story and he got to the bottom of it, because sometimes it's too hard to put the pieces of missing words together. Frank had bought an old 1980 Jeep Wrangler and it was in Kat's brother's mechanic shop getting repaired when the sudden break-up with the PFA order occurred. Now that Frank had some money and Matt's support, he was looking for it and he was imagining that Kat was driving around in it. This was the second occurrence of hallucinations, but we didn't think hallucination at the time, we just thought he was mistaken.
The first hallucination occurred right after Frank moved into Terry's house after she had passed away. He said, "I saw Mom." His eyes were wide open; he was slightly amused but also serious. "She was standing right in front of me, and she was yelling at me." Matt and I couldn't help but laugh. I said, "If your mom could come down and yell at you I'm sure she would!" Matt said, "It's probably because she's seen the mess you made in her closet." It was amusing at the time, but in retrospect this was a new phase of the Frontotemporal Dementia that we didn't even know he had.
We moved Frank into Terry's house. He's not quite 50 years old yet, but so far no one has said anything. I think because the residents all loved Terry so much, they're giving Frank a pass, but they all know. Apparently it's the talk of the town. Whispers at the club house, "did you see Terry's son?". . . "something's not right.". . . "I stopped to talk, but he just smiled like he had no idea." . . . "the lights and tv are blaring all night long." . . . "yeah, the lights are on but no one's home, heh heh."
There was no place for him to go. Pat is getting married and moving to Wilkes-Barre. The house is on the market, so Frank's days were numbered there and Pat didn't want to show the house with Frank's stuff all over. We did manage to find the dog a great new home. Frank seemed sad to see him go, but he wasn't taking care of the poor dog properly. A dog should not live in a cage, he should be part of someone's family. Matt placed an ad on craigslist. We had several calls, but most people couldn't afford the $300 asking price. That was kind of a test. If you can't afford to pay for the dog, you probably can't afford to keep him; hence the asking price. We had a near miss with a twenty-something girl who came with her mother. The mother didn't seem happy with her daughter's decision to buy Panser but she was going ahead anyway. She said she would bring the money on Friday morning, but she never showed up or called. A few days later a motherly-looking, 40-ish woman came to see Panser. She said it was a surprise for her kids. She wanted to know why we were getting rid of him and we explained that our brother couldn't care for him any longer. She seemed to understand and looked sadly at Frank. She went over to him and said she would take very good care of him. She told Frank about how much her children have been wanting a dog and he was going to make them very, very happy. That really brightened Frank up and he seemed more willing to give Panser to the kids he didn't know. I think in the end it was a relief for him to not have to think about taking care of him any longer. About a month later Matt got an email from the woman. It was a picture of three happy children sitting on a couch surrounding Panser who had a big happy dog smile in the middle. She said he was adjusting well after a rocky start and the kids just adore him. They renamed him Sandy. I wanted to cry. I said to Matt "he must think he died and went to heaven. Look how happy he is." "Yeah we did the right thing, we had to." Matt agreed.
"Does your son talk to them?" Frank asked again. "Well, I think they talk sometimes, not often though." We've had this same conversation just about every day. "Are my kids okay?" Frank is obsessed with knowing something about the kids. He asks constantly. It's consuming him. He heard that the large company that Kat works for was bought out by an even larger company but all the employees lost their jobs. Frank thinks that the kids are poor now, so every day I reassure him that they're fine and they have plenty of money. "Do you . . . do you think they have food?" Frank is worried, no matter how much I reassure him.
The next day, he's there again. I can't deal with this every single morning. If I scrunch down I can get the cereal and a couple bowls and bring it up to the kids in their rooms. Eventually he'll leave. But he'll be back.
Another morning, here's Frank again pacing at the door. "I saw Kat, and she was driving my Jeep." Frank was almost breathless at this new development. "No Frank, how could that be." I said.
"I'm telling you I saw her. She was driving by the place, and she slowed down and she looked right at me." Frank explained. "What place Frank, where were you?" I was getting concerned. "Over at Rich's" Frank said. "Frank, you're not supposed to be over there. Why did you go there?" I asked. Kat has a PFA order against Frank, and Rich is her hot-head, a-hole brother. This could be trouble. "Frank, do not go there." I said loudly and plainly so he could understand. "Oh, yeah, I know." Frank answered, but it was becoming increasing difficult to communicate with him and his behavior was becoming more worrisome. He's still driving, and doing it well. I've driven behind him and watched him. He looked both ways, used a turn-signal, pulled out cautiously, so he still has his keys. It's where he's going that has me concerned.
I told Matt about this Jeep story and he got to the bottom of it, because sometimes it's too hard to put the pieces of missing words together. Frank had bought an old 1980 Jeep Wrangler and it was in Kat's brother's mechanic shop getting repaired when the sudden break-up with the PFA order occurred. Now that Frank had some money and Matt's support, he was looking for it and he was imagining that Kat was driving around in it. This was the second occurrence of hallucinations, but we didn't think hallucination at the time, we just thought he was mistaken.
The first hallucination occurred right after Frank moved into Terry's house after she had passed away. He said, "I saw Mom." His eyes were wide open; he was slightly amused but also serious. "She was standing right in front of me, and she was yelling at me." Matt and I couldn't help but laugh. I said, "If your mom could come down and yell at you I'm sure she would!" Matt said, "It's probably because she's seen the mess you made in her closet." It was amusing at the time, but in retrospect this was a new phase of the Frontotemporal Dementia that we didn't even know he had.
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