59: Nobody Said FTD

"Frontotemporal Dementia is the most common cause of dementia for people under 60, affecting more than 50,000 Americans.  Onset strikes earlier in life -  when dementia doesn't even seem like a possibility -  and accurate diagnosis may take years.  Families lose active parents and breadwinners without knowing what is stealing away the person they love.  And when a diagnosis is made, there are no effective treatments.  Changing that actually starts with you.   www.theaftd.org/learnmore"

This newspaper ad could make an enormous difference for someone beginning to notice changes in their family member.  Most people don't think of dementia when a loved one is still in their 40s and showing signs of personality changes and behavior issues.  At this point, there is no treatment, but just having a diagnosis and understanding what the problem is could help families better cope with all the issues involved with FTD and CTE.  In our case, after my brother-in-law got tossed out of his home by his family, he would have been living on the street if we didn't have the resources to help. Not everyone is as lucky.               

58: Is it Frontotemporal Dementia (FTD) or Chronic Traumatic Encephalopathy (CTE)

Matt made the attempt to donate Frank's brain to science. We called several research hospitals while he was at South Mountain to offer his body upon his death. It would have given us some insight into what caused the rapid behavioral and cognitive changes we saw in Frank along with possibly helping others who may be suffering. Calling attention to this set of brain injury diseases is key to finding a cure and treatment. Currently, many health care providers are unaware of what this is, nor do they know how to treat it. Upon admission to the hospital from prison, Frank was given an overdose of an injectable psychiatric medicine which caused muscle rigidity and a permanent tremor.  Based on the concern among the nurses, I suspect there was more that we were not informed of. I also suspect it was due to the doctor being unaware of how to treat the symptoms of brain injury. After being treated by many medical and psychiatric doctors, only one was finally able to diagnose Frank's ailment, along with the advice to take him home. No treatment was available or even suggested. I think we should be able to do better for the millions of people suffering from brain injury.

We suspect that Frank's illness was from his years playing the game he loved, football, and also possibly repercussions from his years in the Army National Guard, but actually we'll never know. FTD was the name given to his set of symptoms, based on his behavior alone, by the psychiatrist in the psychiatric ward of the hospital.

CTE and FTD are linked under the category of "brain trauma injuries" and also exhibit similar presenting behaviors. According to the Mayo Clinic, "Frontotemporal lobe dementia is an umbrella term for a diverse group of uncommon disorders that primarily affect the frontal and temporal lobes of the brain-the areas generally associated with personality, behavior and language."

CTE was first noticed in 2002 upon autopsy of an NFL player after he passed away of a heart attack. The pathologist noticed an unusual pattern of tau protein deposits in his brain different from what would be seen with Alzheimer's. The pathologist, Dr. Bennett Omalu, looked for and found the same pattern in other football players too. The NFL is now on notice to make the game safer for the sake of current and future players health. Although a radioactive compound is being developed to allow the abnormal proteins show up on a PET scan, in Frank's case, without autopsy, we have no way of knowing exactly which type of brain injury he had.

According to Ann McKee, a Boston pathologist researching CTE, studies are focused on finding "the mechanism of the disease, and that would allow us to come up with real therapeutic strategies as well as prophylaxis and ways to prevent this disorder".  Treatment would be ideal, but if research finds a way to prevent or even delay symptoms, thousands of families will have a healthier, more fulfilled future.

Schnable, Jim. "Football-Related Neurodegenerative Syndrome Creates Anxiety—And Controversy." The Dana Foundation, 19 Sept. 2011. Web. 09 July 2014.

57: Frontotemporal Dementia Patient's Last Big Adventure

"Guess who's spending Christmas with us?" Matt announced as he walked in the door, his arms loaded with gifts and packages.
It's Christmas Eve and Matt just got home from work. He's got three bottles of wine, two cookie trays, a  couple of beautifully wrapped gift boxes, and a mysterious cardboard box that looks rather heavy for it's size. I take the cookies from him before they fall and he places everything down on the island countertop.
"Who? Who's spending Christmas with us?" I ask curiously.
Matt picks up the plain cardboard box and announces, "Frank!"
Matt had Frank cremated after his passing, but I never dreamed that he could then be mailed to us. I thought we would be taking one last, long trip back to South Mountain.
"That's Frank? Oh my gosh, get him off the countertop!" I was appalled that Frank's ashes were mingling with my Christmas treats.
"He can play Apples to Apples with us again." I suggested.
Matt said, "He'll probably win again too!"

Frank spent Christmas on top of the breakfront overlooking our Christmas dinner, spending it with us in a way. Honestly though, now that his spirit is free, I know he's not with us. If he could be anywhere right now, I know he's with Frances and Eric. After Terry passed away, I felt an odd presence for a few days. I admitted to Matt that I felt that Terry stayed with us for a time after she passed away and he said he also felt her. He said he knew even before the hospital called us that she had passed. He felt a breeze near his face a few minutes before the phone rang and he felt that it was her saying goodbye. Even my son Brett felt that he had an encounter with her spirit. I don't feel anything with Frank though and Matt says he doesn't either. But I still don't want him hanging around my house for long after the holidays.

"What are your plans for Frank?" I ask Matt after New Year and all the decorations have been cleaned up.
"I'm not sure yet." Matt answers.
"I think we should take him back to his home. That's where he would want to be the most." I said

"I think I might go to Ocean City, take out a boat and sprinkle him in the ocean. I'll call my brothers and see when they can make it." Matt seems like he's already thought it out in his head. Of course, I immediately think of the scene from "The Big Lebowski" when Walter and The Dude sprinkle Donny's ashes in the Pacific Ocean "that he loved so well" but the wind picks up and the ashes land all over them. I keep it to myself though. I'm sure it will be a good family outing, giving them all closure in sending Frank off to his last big adventure.

56: Final Outcome for FTD Patient

Frank lingered for about a year at South Mountain. Once, when we visited I thought he may have reached out for Matt, but it was hard to tell if there was any intention to the slight movement. The last time Matt and I visited him, we stood in his room awkwardly, wondering what to do or say until Matt finally said, "I'm going to go speak to the nurse."
I replied, "Go ahead, I'll stay here and keep Frank company."
I began chatting away about family members, dropping names that would be familiar to Frank and filling him in on the latest accomplishments of the children. There was no apparent reaction, just vacant eyes staring into space, but I continued on the chance that he could hear my voice. Soon, I had a visitor. One of the other residents, a very tall middle-aged man, came into the room. I said hello, but he didn't say anything, he just stood behind me in the corner of the room and listened too. I was a little disconcerted at the expression on his face, which seemed slightly cross, but I tried to include him, even though he didn't know who I was talking about. A few minutes later a woman, about sixty years-old peered into the room at us. She looked angry and impatient at me, like she was wondering when I was going to go home and leave them alone. She continued to pace outside the room in the hallway, but checked in on us from time to time. If she had a watch, I think she would have been checking it. Next, a handsome, friendly older gentleman came in smiling. He walked right up and stood beside me, shoulder to shoulder at Frank's bedside. I looked at him and said "Hello, do you know Frank?  I'm his sister-in-law" The man smiled back at me and mumbled something I didn't understand. He looked at Frank and made a sad expression and mumbled something unintelligible, but with an appropriate somber tone for the condition that Frank was in; extremely thin with contorted limbs. I continued with my long-winded speech about our current events as the man stood next to me, arms folded, nodding his head and smiling, looking from me to Frank, like he understood what I was saying, but I don't think he did at all.  All this time, the tall gentleman stood behind us in the corner, maybe just curious at this new stranger, but not able or willing to participate, and the impatient woman lingering a few seconds at a time in the doorway.

When Matt finally returned from speaking with the nurse, he found the crowd I had congregated in Frank's room and had to squeeze past the angry woman in the doorway. He looked at me quizzically, like "What in the world is going on here?" He said, "Boy, I just left you alone for a minute!"  Truthfully, I was glad he was back because I was a little nervous about the tall man. I introduced Matt to my new friend beside me. "This is my husband, Matt. He's Frank's brother." He smiled at nodded at Matt. We said our goodbyes to everyone, but I almost felt bad leaving them. They seemed so eager to have someone new visit. I knew this would be my last visit.  Frank was so gaunt and pale, it was clear he wouldn't be with us much longer. I kept it to myself though, I knew Matt wouldn't want to hear my dire prediction.

Outside, it was a perfect, beautiful sunny October day. The leaves were beginning to change colors to vibrant oranges and yellows. Matt and I took the self-guided driving tour around the Gettysburg landmarks and took a walk through the path on the battlefield, eventually making our way to Little Round Top where the view is spectacular. Especially on this brilliant clear day, where the leaves are in a colorful blaze of glory just before they burn out and fall.

Frank has fought his battles too.  His divorce, the struggle to maintain a relationship with the children he cherished who turned their backs on him, and the anguish over losing them, his legal issues, and his battle for his health for seven years, have all been formidable foes. He finally surrendered in December, just before Christmas. A nurse called and said Frank's breathing was labored and she didn't think he would make it through the night. I had noticed a rumbling in his chest when I was there in October and I knew it wasn't a good sign. He wouldn't be strong enough to clear any fluid in his lungs and it would eventually turn into pneumonia. Only an hour later they called to say that Frank had passed. He was 53 years old.  Matt and his brother had just visited a final time just a week before, but still he was surprised to hear. Matt, as always, still expecting the best case scenario will be the outcome.

55: Hospital Attempts to Send FTD Sufferer to Jail

We failed to get any spousal support from Frank's wife to help pay for a private nursing home. This unfortunately left Frank in the hospital with no therapy and very little human contact beyond feeding and changing diapers. We tried to have him moved to a hospital near us but since FTD does not require medical care, no hospital could admit him. The social worker at the hospital wasn't helping at all and finally the hospital administrators became frustrated with their situation. They couldn't help Frank, he did not require medical treatments, so they couldn't bill Medicare for anything. They felt Frank was a losing proposition for them in a time when many hospitals are desperately crunching numbers. They sent a letter to the district attorney and the judge in his criminal case from the alleged violation of the PFA Kat had against him. They stated that they could no longer care for him and requested that the judge transfer him back to prison. It's unbelievable that a hospital would make this request knowing that a prison is ill-equipped to care for a dementia sufferer. As a matter of fact, Frank was very near death from malnourishment when he left jail. Thankfully the warden refused to accept him back, knowing that he would debilitate further if admitted back to the prison, even in their hospital ward.

This close call made us finally realize that we had to make a tough choice. We had to make a decision to do not what was the best for Frank, but the best we could do for him. This meant looking further away for his care, to a place that we could not visit often. In the course of my job,  I knew of a nursing home owned and operated by the state of Pennsylvania called South Mountain Restoration Center. They take difficult cases like people with mental illness that many other nursing homes do not accept. The good thing is they take Medicare, so it wouldn't cost any more than what Frank had. They also have a good reputation for providing proper care and treatment. The bad thing is that it's a three hour drive from our home, which turns into a six hour drive when you make a round-trip. With working and taking care of our family, this will limit our ability to see Frank as often as we had been, which was once or twice a week.

Watching Frank waste away in the hospital was difficult, with the pressure from the hospital to discharge him, we knew we had to make this sacrifice. Matt called the hospital social worker and asked her to call South Mountain to see if they would consider admitting him. She had never heard of it, which is surprising since it's the only nursing home in the entire state that is run by the state, but she agreed to try.  By the end of the day we had our answer; they had an open bed and they would accept Frank. He was to be transferred via ambulance by the end of the week.

It was bittersweet. We knew we were doing the best thing we could do for Frank, but it was sad knowing that he would be so far away. Frank didn't know what was happening and didn't seem to comprehend any communication. Still one wonders if he can hear and understand but can't express the acknowledgement.

The social worker from South Mountain called Matt to introduce himself and let us know that Frank was doing great and getting used to the place. They go for walks outside on the grounds and have group therapy and physical therapy to try to regain some strength. He says that they will call and include Matt in the monthly team meeting so Matt can be part of the team planning Frank's care and treatment. The psychiatrist also called to introduce himself and asked for information about Frank and the progression of his disease and his former life. We're very impressed at the level of communication and the concern they have for giving Frank the best treatment they can provide for him. Matt creates a scrapbook of Frank's life. Starting with a family picture from when they were young, football pictures throughout the years, Frank in his trendy mauve tuxedo at the senior prom flashing those dapper dimples, then a few pictures of Frank and his children. We wanted the staff to know that this is the Frank that we know; he's handsome and athletic and a family man, he's not this shell that's left.

Matt arranged a road trip with his brothers to go visit Frank about a month after he was admitted. They meet at our house before starting out on the three hour trip. They stop and have lunch in Gettysburg, just outside of South Mountain, before driving up the windy, hilly road toward the nursing home.

South Mountain Restoration Center is a grand old piece of 1930s architecture built at the top of the Blue Ridge Mountains with beautiful scenery as far as you can see. They go in through the heavy doors and into the white carrera marble clad foyer. The security guard gives them directions on how to find Frank's room. They find Frank sitting in the dayhall in a comfortable geri-chair. They call out to him but he doesn't respond or react. The brothers pretend nothing is wrong and pick Frank up by the arms and walk around the halls with him, helping him along the corridor in a slow procession trying to pretend that nothing has changed. They're cracking jokes and laughing like they would have done ten years ago, before life changed for Frank. Poop falls unexpectedly from beneath Frank's robe onto the floor, which send them all into fits of laughter. Often in times of stress, humor is the way people arm themselves to prevent the reality of the situation from knocking them down. Many years ago when my great-aunt, my grandmother's sister, died we had a similar reaction. She was a very sweet, kind woman and lived a few houses down the street from us when we were growing up. She unexpectedly passed away, and it was very sad. At the funeral mass I sat next to my sister, and while we were very sad, one of us made a comment about going across the street to get water ice at Marcy's Water Ice and somehow, it sent us both into fits of hysterical, silent laughter that we couldn't stop. We were convulsing in laughter with tears streaming down our faces at the silly thought of getting some of that delicious icy treat during the funeral. Finally, my brother left his seat two pews in front of us to come back and reprimand us for our inappropriate behavior. We told him what was so funny, and instead of putting an end to our silliness, he started laughing too and in the end all three of us had to leave the church and go outside for fear of laughing out loud. I don't know why, but it seems things that are mildly funny any other place are really hysterical in church, or any other place that is not supposed to be funny, like a nursing home.

President & Mrs. Eisenhower

The battle of South Mountain was fought in September, 1862 as General McClellan closed in on General Lee. The Battle of Gettysburg was fought in July, 1863. For those interested in military strategy, Gettysburg is a fascinating, yet sad place.  A best-selling book called "The Killer Angels" was written about the Battle of Gettysburg and a movie starring Jeff Daniels was made based on this book. This is also, of course, the place of Lincoln's famous Gettysburg Address. Another little known fact is that after he left office, President Eisenhower retired in Gettysburg to his farm right on the battlefield that he had purchased in 1950. He hosted many international dignitaries showing off his prized Black Angus cattle to people such as Nikita Khrushchev, Charles DeGaulle, Winston Churchill and Ronald Reagan. His home is now kept as a museum. It is a quaint little town and a huge tourist attraction for civil war buffs, especially in the summer for the re-enactment of the battle.

Visiting Frank was tedious, but Matt planned to make the trip as often as possible. Being able to tour Gettysburg added a small reward for the long drive.

54: Courtroom Drama II

It seemed as if Mulva Fargo and the judge had been conspiring before we got there. The first thing Fargo said was "The Plaintiff has no guardian judge, so we can't move forward with his petitiion."
Before the judge could speak, Angelo pulls the document out from our county courthouse that appointed Matt guardian for Frank.
"The plaintiff's brother has been appointed full guardian" Angelo states as he shows the judge the document.
There is stunned silence. The judge and Fargo peer at the paper with their mouths open like it's a genie that just popped out of a bottle. 'Uh,  uhh, I don't think we can accept this. It's not from Delaware County." The judge finally speaks an octave higher than her normal speaking voice.
"That's right judge, we can't accept a ruling from Montgomery County." Fargo parrots the judge and she says "Montgomery County" with disdain like only cretins are from Montgomery County.

"There is no jurisdiction on guardianship." Tom DiLiberto offers.
The judge knows he's right, but she just had to let this sink in a moment. She and Fargo did not plan on actually having to move forward on this case. They had no idea that Matt would obtain guardianship. Their plan was to halt all proceedings for lack of guardian even though she finalized the divorce without one.

Tom DiLiberto took control from here. He cut through all the bickering and told them what he wanted for Frank; half of Kat's retirement account. It is to be examined by an expert in pension valuations and a number determined. This new attorney is so professional and competent, everyone is mesmerized by him and instantly agrees to everything he says. He's like a legal Svengali. He made a simple, professional argument and didn't waver off his path with petty remarks and side comments. If I had to offer advice to anyone with legal issues, it's to ask around and hire the most well-respected, competent attorney you can afford because in the long run, it will be well worth it in speed of settlement of your case.  Fargo was taking advantage of her position in the courthouse causing Angelo to chase his tail, taking up time and money. The emotional toll on our family, including Angelo, has been huge. We wanted to help Angelo get back into practicing law and at the same time help Frank. It seemed it would be helpful to have someone that knew us take on the case, but we found out it wasn't so. Angelo was too emotionally invested to be effective and he just didn't have the experience to leave his emotions out of the case and ended up giving Frank an enormous bill for his legal service. He worked on the case morning until night, often spending hours at the library doing research. He claims he had to turn down other work to address Fargo's constant filings. Angelo is so angry now that he no longer speaks to us because Frank could only pay a small fraction of the very large bill he handed us. The difference between Angelo and Tom side by side was very apparent, Angelo stood to the side of the proceedings like a third wheel on a blind date. Even he knew he was out of his league and all he could do was observe how it's done.

Tom and Angelo left the judge's chambers with a verbal settlement agreement. He had to sell it to us now. Matt and I and his brother were ushered into a conference room. The judicial candidate asked if she could come too and we were happy to have her in case we needed an impartial opinion. We wanted alimony from Kat to help Frank find a nice nursing home. The first thing Tom said is "You're not going to get alimony. They don't do alimony in Delaware County and if you did get it, the most you would get is $200 per month. That's not going to help anything, so you need to get this idea out of your head. I'm not going after Fargo either. I'm not going to attack another attorney, so that's not happening. (This may have been a swipe at Angelo and his gutter attacks on all three involved attorneys) We've reached a settlement agreement, we're going to split her retirement in half. It's a good offer and they've agreed to it, I think you should accept it."

We were disappointed that he wouldn't even try for the alimony. This is not your typical divorce; this man actually needs to be supported. I tried to argue our case but Tom interrupted me. "You will not get alimony, the judge will not order it. You need to let that go. This is the best you can do for your brother and also the best thing for you too so you can finally settle this. I can argue it for you but it will go on another year. Is that what you want?"

I look around the room at Vince, Matt, the judicial candidate, and they're all looking back at me, so I speak up. "She should have to support him. She's gotten everything. The kids, the house, the money, all their stuff  . . . everything. She's sitting there all fat on top of the pile of their lives. Frank's gotten nothing. I think it's time she gave something back."
Vince looks at me and says, "Thank you Susie."
I'm a little fired up, so all I can do is nod at him.
Tom answers me, "It's not always about what's fair, or what's right. Sometimes it's just the best we can do."
I look at the judicial candidate, and she looks back at me sadly with a nod of resignation. "He's right, take the deal." she says.

Just then the door to the conference room opens and there's a woman standing in the doorway. She looks as if she's about to say something, because her mouth is open, but she's not saying anything. I think she's incredibly rude for interrupting us and finally I say to her, "Yes? Can we help you?"
Her mouth engages with her brain and she finally stammers, "Are we ready to continue?"
Tom answers, "Yes Judge, we'll be out in a moment."

I guess if I had looked her up online I would have known it was the infamous judge, but I had no idea and she certainly didn't fit my imagination of what she would look like. Delaware County seems to have this weird fashion time warp. She looked like she was straight out of the late seventies, with a bad Farrah Fawcett hairdo and sparkly blue eye shadow. I thought maybe she was a secretary who needed the conference room for carrying on her affair with the married bailiff. Once I knew who she was I was a little embarrassed that I spoke to her in that tone. We all noted that something threw her off when she opened the door. She was about to speak but couldn't get the words out. It was something she didn't expect. I think it must have been our judicial candidate. She was sitting directly opposite the door and would have been the first person the judge saw when she opened the door. It was an interesting and perplexing reaction.

"So, do we have an agreement?" Tom asks the room.
Matt speaks up, "Yes, I'm a little disappointed, but if that's the best we can do, then we'll take it."
"You've made the right decision." Tom replies. "Let's go tell them."

We walk out of the conference room and find the judge at her desk, and Kat and Fargo at theirs. I had no idea that they were all right outside of our room and I'm wondering if they just heard all that just transpired.  We had to file past everyone to get back to our seats, I feel their eyes on us and I feel like I'm in a weird parade.  The bailiff calls court to order and we all have to stand.

The judge goes over the agreement and asks both attorneys if they agree, which they do.  At the end, Fargo asks if she can make a statement. She and her attorney stand up while she reads this long speech about how she will not be held accountable for any malpractice, no one can sue her for acting improperly, and such. Matt and I look at each other in shock at this bombshell. I'm looking at Angelo and waiting for him to say something. He's just sitting there staring straight ahead like a zombie. I feel like jumping up and objecting, but I have to guess that Angelo knows what he's doing. Fargo finishes absolving herself of any wrongdoing and the judge bangs her gavel to finalize the proceedings.

As professional as he was during court, Tom's exit has to be the most unexpected, unprofessional exit I could have expected. He's the first out of the room; at the bang of the gavel he jumped up and hurdled over the railing into the spectator section, then ran out of the courtroom like a plaid-clad super-hero on his way to solve his next case. It wouldn't have been so amusing if he didn't have on that trendy plaid suit, but the total picture gives everyone some unexpected comic relief.

Matt, Vince, Angelo and I go out to lunch afterward. We're sitting in a booth at a local seafood restaurant discussing the case. I say, "What was with that speech Fargo made?"
Matt answers, "I know, I couldn't believe it!"
Angelo asks, "What speech?"
"You didn't hear her? She made a long speech about how she's not accountable for anything she did." I respond.
"No, I didn't hear it." Angelo states simply.
Matt and I give each other another glance. We can speak without saying words, but we'll talk about this later. How could he have missed it? Where was his mind while she was orating for several minutes absolving herself of any wrongdoing after he's been accusing her of nothing but wrongs since he's been involved in the case?

We just hope that this is finally the end and we can all move on. Frank's needs are what is important to us at this moment and we need to get back to focusing on this and not Kat's drama club. There's nothing but drama surrounding this family though.

53: Courtroom Drama I

Our day in court finally arrived. We awoke early, but it wasn't hard because I was so nervous I was up well before my alarm went off. I fretted over what to wear. I thought I should dress conservatively for court. I also thought we should make a good impression on the judge, especially after the newspaper article accused them all of misconduct. Matt and his brother wore the usual guy outfit, blazer, shirt and tie. I chose a flattering black pencil skirt and a black three-quarter sleeve cardigan sweater with pearls. I even had extra time to style my hair in cute, loose waves.

Angelo insisted we be there thirty minutes early. We stopped off at Tom DiLiberto's office but he never came out to the waiting room. We didn't get to meet him until he arrived at the courthouse. We went through a metal detector and found our way to the assigned courtroom. Domestic Court looks like the set of Judge Judy. There's the largest desk for the judge, two slightly smaller desks for the defendant and plaintiff, and a railing with three rows of chairs behind it. Matt and I, his brother and his aunt and uncle take a seat behind the desk that Angelo settled into on the left side of the room and wait for everyone to arrive. First Nicholas Zinc arrives with his own attorney. He offers to testify that Fargo never offered him interrogatories and that she also threatened to have Frank arrested for violating the PFA if we didn't finalize the divorce and drop our request for alimony, but only if we promise not to hold him liable for any negligence on his part. He holds out a paper for Angelo to sign. I'm fine with this but Angelo won't sign; he wants to leave his option open to sue Zinc later. So before court even starts we have our first drama. Nicholas' lawyer says "Then we're out of here. Let's go". They abruptly get up and stalk off. Next in walks a wild-haired tramp with a too tight skirt and blouse. She traipsed in a circle around the courtroom on wobbly heels like a ring-girl in a boxing match, then announced to the two bailiffs off to the side, "I don't even know why I'm here." and she exits. I guess that this is Frank's second attorney Tammy from the hot dog cart. Another woman passes her in the doorway. I recognize her from her campaign posters. She's a Democratic candidate running for judge. I walk over and introduce myself to her and thank her for coming. She tells me that she was a nurse before she was a lawyer so she is particularly interested in this case. She took time from campaigning at the train station to come over and observe the proceedings today. She's the one who told me that a Democrat hasn't been elected to Delaware County Court since the year 1790, or something like that, so she's not really expecting to win, but I told her that I would help if there was anything I could do. The reporter who wrote the article sticks his head in the door. He looks around, waves at us and goes back out again. The next arrival is Tom DiLiberto. He's not what I expected and he doesn't look like a former federal agent. He's a thin wiry guy with receding hair slicked straight back and shiny. Even more striking than his hair was his suit. It was a gigantic plaid print, on the jacket and pants and it was very slim fitting. It wouldn't have been so bad if it were just the jacket or just the pants but on both it was too much pattern. He made a very striking appearance, but not at all what I thought a former federal agent would wear to court.

Matt and I were looking to buy a house in Philadelphia a few months ago. My two older sons are in college there and we thought we would buy them a house to live in rather than pay someone else rent. We had several appointments scheduled for a Saturday afternoon. The first house was a lock box so we just walked in, looked around and left. The second house was occupied so the realtor rang the doorbell but no one answered. She rang again and still no one came to the door. Finally, the realtor called the owner to tell her that we were outside. We could hear the conversation from the realtor's side, "Hey, this is Emily, are you home? We had an appointment to show your house? . . . oh, uh, . . . really? No, he's okay . . . okay bye."  Emily the realtor turns to us and says, "they're home but they didn't want to let us in because they think Matt looks like a fed." The door opens and a woman is standing there. She looks apologetic, "I'm sorry, come on in." We walk around with Emily and quickly decide this cluttered, ninety year old house isn't for us, but we stop to chat with the owners on our way out the door. There's a large dog cage on the floor of the front room and there's a baby running around. She said the baby loves sitting inside the cage and laughed and explained that strangers might think she's keeping her baby inside the cage. We all laugh and it becomes an ice breaker. The man, who was a little paranoid a few minutes ago, opens up and tells us that he's the third generation of his family to live in the house. His great grandfather bought the house when the trolley still ran up and down the street. He told us that one day his great-grandfather got drunk and passed out in the middle of the street and when the trolley came by it drove over him and cut off his legs. It must have been the way he told the story, but we all laughed. It seemed funny at the moment, but I felt a little embarrassed later that we laughed at a man getting his legs cut off by a trolley. Matt looks more like a fed than the actual fed, so I guess you can't tell a book by it's cover.

"Paulie Walnuts"

The courtroom door opens again.  In walks Kat looking more heavy but with the same dark helmet lady-mullet hairdo that she had twenty years ago when I met her, now there's a little gray on the sides which gives her a "Paulie Walnuts" kind of look. Right behind her is Mulva Fargo wheeling in a hand cart loaded with three large document boxes, another woman is behind her also with a handcart full of boxes. Obviously, this is to lend more drama to this sideshow.

The judge shuts this circus down before it even begins. A woman comes in and says to the attorneys, "Judge would like to see you in her chambers." Angelo, Tom and Fargo exit the courtroom leaving just us spectators behind. We've got a party on our side of the courtroom with family and our new friend the judicial candidate. Kat is on the other side all by herself, sitting there staring straight ahead. This morning one of the things I was worried about is if I should say hello to her. She gave me my answer by not even looking my way once. I felt a bit sorry for her today though. Just a few years ago she would have been next to me laughing and talking too, part of the group. It's sad that she's taken this low road of turmoil and subversiveness.


                                                     

52: Cracking Under Pressure

"Susie, why did you have to get poor Angelo involved in this mess?"  Betty, Angelo's wife, called me a few days after the article hit. "You know he can't handle this pressure." Betty was worried about Angelo's state of mind. He had given up practicing law these last ten years or so in favor of real estate. Handling people's problems, like lawyers do, is not for everyone. If someone cannot wall off the job from their real lives, or operate unemotionally they may become troubled. Actually, I was getting worried about Angelo too. The enormity of Frank's problems combined with his severely declining health, the unbelievably uncaring attitude of not only the court, the hospital and the community, but of his family also, have all combined to make us all incredulous at the cold, callousness of the human race, in particular when it involves money. It is said that money is at the root of evil for many people, but it seemed Frank's family and his wife's attorney in particular.

Angelo was calling me several times a day to rant about his pressures. He was also calling Matt at work constantly. Matt has a stressful, high pressure job and needs to be able to concentrate. I tried to tell Angelo that even I don't call Matt unless it's important. This didn't stop him from calling Matt several times a day. Even when Matt would try to explain to him that he couldn't talk at that moment, Angelo would become offended, thinking that Matt was not respecting his time, and would continue his ranting anyway. Even Matt's co-workers were complaining about Angelo's constant disruptions at work. He was ruminating on the case; how he wished he hadn't taken the case on,  how he hated Fargo, and how the judge was conspiring against us, how he wished he could trade places with Frank and just mentally disappear.  He was becoming paranoid about everyone, including Matt and me, and he began turning my own parents against me. Angelo needed to be able to put it all away and only deal with it when he needed to; that's what lawyers do. He wasn't putting the case away when he wasn't working on it, he was thinking about it constantly and everything became personal. He began talking about the bill and how much the case was costing him, professionally and personally. He claimed he couldn't take on new cases because this one was taking so much of his time. Every time he brought it up, it was some skyrocketing amount even though he knew Frank was destitute. Angelo became so irrational that I began suspecting either drug abuse or a personality disorder. Even my children began complaining about the constant deliberations in our home. I found myself hoping that Angelo wasn't going to drop by, because his behavior was becoming emotionally overwhelming. Every thought that entered his head became our emergency and must be acted on immediately. The stress was affecting everyone, which permanently damaged our relationship.

"I'm so sorry Betty, I had no idea it would come to all this." I apologized. If I had known it would become this complicated I never would have allowed him to get involved. I think we need some reinforcements. We're hiring another attorney to help Angelo." Matt and I knew that Angelo was in over his head on this. A divorce should not be this complicated, or continue for six years when there are no assets to fight over, and Angelo was becoming increasingly paranoid. At Angelo's insistence, Matt called an associate who was a federal agent. He told her about what was going on at the courthouse. Local government corruption wasn't really her thing, she investigates drug rings, but she recommended an attorney in Delaware County who was a former federal agent, Tom DiLiberto. A local attorney that the judge was familiar with could also help even things up for us. Matt called him, told him why we needed him, and asked him to go to court with Angelo. Angelo sent over the load of briefs and filings that had been exchanged up to this point. We never even met with him before our day in court, but he inspired confidence with his direct and efficient demeanor.

Our day in court was coming up soon; three weeks from the day the article was in the paper. Angelo began sending out subpoenas. Fargo claims that she answered interrogatories about the divorce. Interrogatories are questions that each party are supposed to answer about themselves and mostly about their finances. Fargo refused to allow Kat to answer any new interrogatories, claiming that it was done already six years ago, but she wouldn't let us see them because they were in storage. Nicholas Zinc told us that there were no interrogatories done so we knew that she was lying again. Then she said that Tammy Cavalier had them. Angelo subpoenaed Nicholas and Tammy Cavalier to get their testimony about the missing interrogatories, so then she said that they were lost.

Angelo, Matt and I were still looking at all angles to gain us some psychological ground with Fargo and the judge. Since it was mid-October, election day was right around the corner. We called every candidate running for judge in Delaware County to point out our article in the newspaper and offer our support if any of them would like to use the court's misjudgments in Frank's case against them. We got three call-backs that showed interest in our case. What it was going to amount to, I wasn't sure. There hasn't been a Democrat judge elected to Delaware County Court since the year 1789, or something like that. I'm not sure if Frank could change that, but if any of them wanted to give it a go, we were offering our support. We were trying to get a packed courthouse to show support for Frank. I was counting on these few candidates to show up, the reporter, one of Frank's brothers, and their aunt and uncle. I envisioned the aunt sniffling into a lace hanky and me comforting her with an arm around her shoulder. I thought maybe someone could make audible huffing sounds when Kat testified. I was actually worried for Angelo that they would charge him with contempt of court to punish him for the article. Angelo had us so paranoid, I didn't put anything past these people.

Meanwhile, Frank was still in the hospital. They weren't using the restraints as often because we complained to everyone in the hospital. They had to have extra staff to take care of him. We often saw someone in there feeding him or helping him walk in the hallway. That was the best they could offer though. He needed nursing home care with activities and therapy. The social worker at the hospital hadn't been able to find a place for him yet, but at least the hospital seemed to have a better attitude toward Frank's care.

51: Frank Hits the Print

"Susie, did you see it?" Angelo called me, shouting into the phone, first thing in the morning.
"See what?" I ask.
"The article, it's up." Angelo is excited beyond words. "I wish I could be a fly on the wall at that courthouse today."
I was just walking into work. "You're kidding, oh my gosh!" I had butterflies in my stomach all of a sudden. It's a scary thing to go public. We were opening ourselves up for scrutiny and airing our dirty laundry for all to see. Also, I didn't know if the judge would retaliate against me or Frank in some way, it was a risk I felt we had to take. I threw my purse down on my chair and started up my computer. After waiting a couple weeks for this article, I had kind of forgotten about it. It didn't hit the paper as fast as I thought it would, so I was wondering if the reporter had changed his mind. Maybe he was just waiting for a slow news day. Either way, he didn't warn me that it was coming. He never contacted me again, even after I sent him a thank you email for showing concern for our plight. I guess because it wasn't personal, he's just doing his job, and moving on to the next story.

The article starts out describing his visit to the hospital. He said that he told Frank that his sister-in-law sent him, but Frank looked at him with incomprehension as if he was trying to figure out if he was a person or a thing. Then he described his physical appearance, thin and pale. Next he says that Frank has Frontotemporal Dementia, an incurable and progressive disease. That's all he says about it, but if the FTD Association had collaborated on the article, it could have been more, and this will haunt us. He goes on to call the judge out by name for finalizing the divorce while Frank was in prison and unrepresented in court and he says that Fargo is "alleged to have engaged in an unethical conspiracy to deny this patient his rights." He also calls Kat out for having an affair with another man. So we pretty much covered all the players, and now they all have a reason to hate me.

By 10am there are comments posted on the article. The very first comment muses that Frank must have been an alcoholic, because no one ever has dementia at age 51. This upsets me, especially that it's the first comment and anyone reading it will be influenced by this one thing. I call my contact at the AFTD again to see if they'll change their mind about getting involved now that the public thinks that FTD is from alcohol abuse. I plead with him to post a comment from AFTD to dispel this myth officially. Again, the director feels that it goes against their mission to educate the public about FTD by educating the public about Frank's FTD. She says that she can give me information and I can post it myself. This causes me to fire off a nasty email to her:

I'm sorry that you feel this way. It's a wonderful time to comment on the misconceptions that occur with this tragic disease. The first comment to post on the article felt that he must be an alcoholic to have dementia at age 51. This deeply offends me and I felt that your organization should be the ones to set things straight. If I post, it seems that I'm only defending Frank because we're related.

I am deeply disappointed that you do not feel, as I do, that this would be a great time to make the public aware of AFD. You have no idea how long it took us to find a diagnosis for Frank. Most people have never heard of someone so young with dementia. He had been to a psychiatrist, psychologist, neurologist, general practitioner and finally a three week stay in a hospital psych ward before we finally knew what was wrong.

You could have made a difference for so many people experiencing this same thing. I'm sorry that you are not the advocates you claim to be. Keep your pamphlets, because by the time someone needs them, they already know all they need to know the hard way.

The issue is debated all day about whether Frank was an abuser or not, how men are treated unfairly in divorce, someone posted a nice message about being a caregiver. There were many comments that were extremely personal. One said that they knew Frank and he was abusive, one said that since my children went to private school that I should be able to afford to take care of him and gave out personal information about us. It was quite obvious that the Green family were posting up a storm. I didn't want to get involved in fighting in an online forum so I restrained myself from responding, which I'm sure drove Kat nuts. Right before I went to bed I checked the comment section one more time to see if there was anything new and there was one last comment posted at 11:00pm. It said that Frank should "kill himself like his mother did". This one actually frightened me with the hate and viciousness. I reached for the mouse and clicked off the web page as fast as I could, as if a snake had just popped out of the screen. This is not information that anyone knows about us and could only have come from Kat or Little Dick (see entry 18). I went upstairs to tell Matt that I think he should see it and by the time he came downstairs and we logged back on to the article, the comment had been removed by the newspaper. Matt was concerned enough to call the reporter the next day and he expressed shock at the horrible comment and said he was sorry we saw it and that he removed it right away. Matt told the reporter, "Well, now you know what we've been dealing with. The Greens are trash. Frank wanted to get married and he married the first thing that came along, to his detriment."

Speaking to a reporter about a very personal issue was a difficult thing to do; it goes against my nature to draw attention. We were outraged at what was perceived by us as the judge, lawyer and courthouse employees working in concert against us, and I was grasping at anything I could think of. I believe that calling into question the groups integrity forced the judge, who had only been on the bench for two years,  to realize that she needed to end this game that she was letting her girlfriend, Fargo, get away with and get serious about the job that she was elected to do.

50: Publicity for Frank's Case and FTD

"This shit is starting to piss me off." I'm not usually like this, but this is getting ridiculous.
Frank is lying in a hospital tied down to the bed 23 hours a day, I think he knows Matt, but I don't think he knows anyone else There's no place to put him that accepts Medicare around here. We've tried. The social worker for the hospital is calling us every few days to see how our search is going. Almost as if she hasn't tried anywhere herself. Every time Matt asked if she tried different places, she acted like she hadn't thought of that one yet. These are places in a 30 mile radius that she hasn't tried; we're wondering just what it is that she does. She speaks the lingo they may be looking for and we don't, so we have to push her to call. She just wants to put pressure on us to figure it out. The hospital administration is putting pressure on her to get rid of Frank. They can't help him and he's costing them money now because Medicare stopped payment for him.

It's July, we were supposed to have our "emergency" hearing for spousal support for Frank that we tried to schedule in February. The woman in Domestic Relations at the courthouse must either really hate Frank or really love Fargo. The hearing we asked for in February was scheduled for April, but that got cancelled by Fargo and rescheduled for July. Now, Fargo says she has a "medical procedure" and it's been re-re-scheduled for October. I guess Delaware County's idea of an emergency is different from ours. From being tied to the bed all day, Frank can no longer walk without assistance. Matt pointed out to the nursing director that there are regulations regarding restraining a patient, she thought that if it was for his safety that she could just keep him tied up all day. They explain that they don't have the staff to take him to the bathroom and feed him all day, so they put him in diapers and put a tube in his stomach to feed him from a bottle. Complaining to the judge in our case does absolutely no good, she couldn't care less, and she let Fargo get away with canceling another hearing. It's inhumane, and I'm getting quite angry.

I called the Disability Rights Network to complain about the treatment we are receiving by the courthouse. Maybe we're doing something wrong, because this doesn't seem right. They do actually listen to Frank's story and call me back two days later to say that they can't take his case. They can only take on so many cases and this one doesn't meet their criteria. I call the ACLU next, they listen to my story, but are not interested. I call the Association for Frontotemporal Dementia. They listen to my story,  but decline to get involved. They tell me that they really only do education, like giving out information to patients and caregivers. I explain that Frank still has DUI charges pending because he couldn't follow the series of instructions the officer gave Frank to test for DUI. Despite having no alcohol or drugs in his system they refuse to drop the charges. If they want to give education, how about giving education to the police forces in the area about dementia and how it can be mistaken for DUI. No, they can't do that either. This truly disappoints me because they could have really made a difference just with this one topic. But they tell me that they can give me some information if I want it. I politely decline. I called the Alzheimer's Association and tell them Frank's story. They don't advocate, they just give out information they explain to me.

"Okay, now why do they do all this fundraising if they don't actually do anything?" I ask Angelo.
"I guess to pay for all those pamphlets they give out." Angelo offers. "Susie, maybe if we get a reporter interested in the story, you know, shed a little light on the case, the judge will feel some pressure to stop siding with her girlfriend Fargo."
"Well, I've made so many calls already, what's a few more." I agree.

I start with the Philadelphia Inquirer and Daily News. I send emails with this crazy story to every reporter listed on the web site. I'm sure they get tons of people thinking they have a story. I don't get even one reply back. I contact the local newspaper next. Again, I send the same email detailing Frank's deteriorating condition and the unfair treatment we have received by the courthouse employees and judge. I explained the missing documents, the hidden divorce decree without notification, the judge's refusal to appoint a guardian for Frank even though the court's own psychiatrist said he was incompetent to stand trial, the delays in our "emergency hearing", allowing his physical condition to decline in prison for something we're not even sure that he did, but we are sure it was in retaliation for asking for alimony, Fargo telling the judge that Frank never paid child support even though it drove him broke, also telling the judge that Frank was the one holding up the divorce because he wouldn't sign the papers even though we have letters from Fargo, in writing, saying that she will not agree to any settlement. Fargo lies so much I think she doesn't even know the truth any longer and I've had enough of their abuse of poor Frank. He can't carry this torch any longer, but we can, and we're fighting back.

I park my car at work on a Wednesday morning and I am about to go inside the building when my cell phone rings. I pull it out of my purse and look at the screen and see it's the newspaper. I'm so excited, my mouth suddenly goes dry. "Hello?" I ask with trepidation. My voice shakes a bit. I know this could be really big or a really terrible mistake, but I won't know until I do it.
"Hi, Susie?" the caller asks.   "Yes" I say sounding more excited than I feel.
"I'm a reporter and I'm interested in the story you sent me about your brother-in-law."

He asks a lot of questions. He wants to know about my relationship with Kat, if Frank was abusive in any way that I know of. I explain to him the phone call she made to Matt recently where she described Frank's anger at the vacuum cleaner. If there was any anger directed at her or the children, she would have said it then. He asks about the courthouse and he says that everyone knows that Delaware County has a corruption problem, but no one knows what to do about it. He does warn me that if he writes this story, we may not be happy with the outcome. He explains that he's done this type of story before and sometimes the public opinion is different from what one expects and it actually has negative consequences. I discuss this issue with Matt and Angelo later that day and we all decide that it can't get much worse for Frank and this may be just what we need to level the field a little bit. Maybe some sunshine on these people will help end the torment they have put Frank and our family through. The reporter was very thorough. He spoke to Angelo even longer that he spoke to me and Angelo gave him all the briefs and correspondence that he had that related to the case.

The first thing I did was call my contact at The Association for Frontotemporal Dementia. I was really excited. I told him, "You say you are interested in educating the public in FTD, well here's your chance. Talk to this reporter about what this thing is so the people reading the article will know what FTD is. I think it will give a great dimension to the story and bring some publicity for what you do."
"Well, I have to talk to management first. I'll get back to you as soon as I can." my contact explained.
"Well, okay, but don't take too long. He's writing this story now." I say.

I get a phone call back from him about an hour later and he says. "Sorry, they say they can't get involved in legal issues."
I am absolutely incredulous. "Are you kidding? This is your opportunity to do what you say you do in a big way. How could you let an opportunity like this go? There are people out there just like us, going from doctor to doctor, trying to figure out what's wrong and not finding answers. It took us four years to get a FTD diagnosis. You don't even have to talk about Frank, just give a general statement about what FTD is."
"Sorry Susie, the director declined. She said she can't get involved." the guy explains to me.
"Well, tell her I think she's making a huge mistake. I truly question her commitment to her job and her stated mission to help people find information. I am terribly disappointed."

I get an email back from the director:

Thank you for contacting us, and I am sorry to hear about the situation with your brother in-law Frank. The Association for Frontotemporal Degeneration is a non-profit organization whose sole mission is to advocate for people who live and work with FTD. Our goals include: promoting public awareness of the disease; providing information education and support, to people diagnosed with FTD their families and caregivers; educating health professionals such as, doctors, nurses, and residential facility staff; and supporting research into treatments and ultimately a cure.

A key part of our mission is to help people find the information and support they need to manage the effects of FTD. One of the most useful things we can offer is a connection to others who live or work with the disease and are willing to share what they have learned. Please consider this message an introduction with an open invitation to check back with us whenever you need help finding resources or support.

I think AFTD can be most useful in this situation by offering information about FTD and dementia care to your family or the attorney handling your brother-in-law’s case. I encourage you to direct people to our website and anyone is welcome to contact us via the helpline by e-mail or phone with questions. I have also attached an overview of FTD as a pdf which you are welcome to share as you want.

We do not have the resources or qualifications to do advocacy on an individual basis beyond providing information but I have included some links to other resources below. Because FTD is rare there is not a lot of professional expertise available and often the real experts are other caregivers who may have faced some of the issues you are confronting and are willing to share resources and support. This may be most helpful in terms of finding a long-term care facility able to provide Frank with the care he needs. We list caregiver support groups and medical centers with expertise in FTD on our website at the link below and I encourage you to contact the people listed for more information.

They want to give information to people who already know they have the disease; that's the easy part. By the time this thing is diagnosed, we already know more than we want to know. I have no choice but to accept this; we go on with the article without them.