Coffee With My Husband

October 25, 2017

Today I had coffee with my husband.

Side by side. Sipping and smiling. Holding hands too.

Shame on the rest of you for taking that for granted. I haven’t shared coffee time with him in ten years. Didn’t want to when he was going through the initial Terrible Times in FTD Dementia (the part when he – and people around us – told me I was crazy and sick). Then I wanted to throw coffee at him, maybe. But never sit compatibly drinking it.

Times have changed. Because now I do. And I can.

Last week, we finally got him moved to a new secure dementia facility in Brea, CA. He has been in an “old folks” home for eight (eight!) Years now. His sister and the Toxic Lawyers have made sure every single facility was hell for him – and for his family. Visiting is excruciating – always. But visiting when the staff has been poisoned and the heart wrenching situation is completely out-of-control…..it requires a Super Human to do it.

I am a Super Human.

So I pour coffee. I dilute his by half – he knows temperature at this stage but not flavor. He sips. I sip. I talk – about anything and everything. He is silent. (He has not spoken more than one word in years). I can trick myself for a nano second that we are still that happy couple – growing old together – not tormented by illness, loss, and unscrupulous people. But instead we are still here. Still struggling mightily against nothing. And everything.

Keeping us each in our prisons.

Painful.

Unending.

Toxic Justice – Kobe Bryant Style

Toxic Justice – Kobe Bryant Style
Today we celebrate Kobe Bryant – an American hero. Retiring after 20 years and 5 NBA championships. And yes, we forgot what happened in 2003 in a hotel room in Edwards, Colorado. We brushed aside the fact that Kobe never paid for his mistake. Only his victim did that. We somehow accepted that his legal team just saved him with Business As Usual. No matter what the human price.

I can only guess what happened to that 19 year old desk clerk with bruises on her neck and abrasions in her vagina. But I know first hand, what happened to her when she got to court.

Because me, my sick husband and my kids have all been raped and sodomized. But not by an icon. We were annihilated by the legal system with the lawyers who go to any length to win.

News flash for the uniformed: this is how it works. Attack the victim. Place blame somewhere else. Repeat unsubstantiated accusations over and over until they rewrote history. Create a narrative to your liking – fictional and salacious and completely untrue. It’s what the American Justice System is all about.

It works. And it’s not just about high profile celebrity cases. Lawyers lie in court. Judges allow it. Courts encourage it.

The Kobe Bryant victim was put through the ringer. People who knew her and loved her, plus acquaintances and even strangers made allegations against her.

That happened to me.

What happened in court was by far more devastating then what happened when a little know disease called Frontotemporal Dementia came to our house. We were left paralyzed by a devastating diagnosis that included dementia and death. There is no treatment and no cure. Our wonderful husband and father turned into a monster who terrorized us day and night – normal for many with FTD. Our family and friends stepped away instead of stepping up – allowing the lawyers to take everything David and I worked 30 years to obtain.

The world went against everything my well husband believed in. Love of his wife and children above all else. Trust in me to take care of him – and his family – forever.

The day the rape ordeal started in our family was the day that Toxic Elder Lawyer John took $25,000 from a man diagnosed 2 years before with an incapacitating disease. He rewrote our Family Trust into a new invalid one…….by charging my sick husband’s credit card because he could no longer write a check.

From that day forward, lying, cheating and stealing was condoned by first the friends, then the lawyers, then the court and the Bar Association and then our families.

Blame the victim: I have been compared to a “murderer” in court by that very lawyer.
Make up accusations: I have “stolen” fictitious money. Slander the innocent: I have “warehoused” by husband (in a five star assisted living facility after a team of doctors recommended he go there). Attack the mother: I have “poisoned” our children. (They should have noticed that our children stood shoulder to shoulder in support of me.)

Victim blaming doesn’t care about the details. I barely kept my head above water as I found myself doing the work of two people to save our business. I made myself the mother and the father to save our kids. Still, we were abandoned by anyone who could have really helped us.

Is it possible Kobe wanted to come clean? Admit his wrongdoing? Be a person of integrity? Yes. But if he did, who do you think told him he could not?

Kobe Bryant never paid his price. The victim did though. It’s the same for us. David and the kids paid. I paid. Almost with our lives. Forever.

The Toxic people? Like Kobe and his dream team of Toxic lawyers, they were rewarded with riches. And admiration. They have rationalized what pain they have brought to the victims. They have compartmentalized their role in devastation. And they had trivialized what it means to be human.

It must stop. For rape. For dementia. For anyone who stands in an American courthouse, tells the truth and expects justice.

For now, they will be desperately disappointed. Just like me. And that teenager who was raped.

Gaslighting

August 2015. He still says “right!” It just sounds like “what!”

It’s Fall of 2015 – ten years of Dementia Mayhem. I am so glad I did not know it could last this long and pulverize our family the way it has.

My David is in a new place: Vista Memory Care. When you arrive in the driveway, the front gate mysterious and silently opens. You park your car and the front doors to the facility magically pop outward – a snazzy Welcome-to-the-House-of-Dementia of sorts. The fob you are issued at the front desk will admit you to the locked basement. You walk past the homey theater and the Reagan library and the beautiful dining room to get there. And the first time you descend, you wonder what horrors you might find below.  David is here with the others – they are older by 20 years some of them, but they are certainly brethren in Lost Minds.

And Dave is very happy here. I am happy that he is happy. These are people who understand FTD. And the families who are overwhelmed by it. At last. I cried when the Activities Director handed me a hand made flower pot David had crafted. I cried when the Director said “I am so sorry for what your family has endured.” And I cried when David passed out little cups of yogurt to his children (and they each threw them in the trash when he wasn’t looking with frozen smiles on their faces.) He has been in a secured facility for 5 years now. Unbelievable.

The lawyers are busy taking every penny that David and I ever worked for again this month. In court last week, the Toxic Lawyer #1, (the others call him the silver fox and snicker at how unethical he is) made a long emotional speech to the judge against me. I have heard this impassioned – ridiculous – diatribe before. Based on never knowing me and the $250,000 in fees he has “earned”, he said again the same unproven litany of accusations and lies.

And now I have a name for it. Gaslighting. Toxic #1 is a master. The purpose of Gaslighting is to manipulate you into doubting yourself. Saying something so many times or in such a manner you question yourself. It’s covert abuse of the very worst kind. I may have fallen for this years ago – but not any more. He does not convince me. And he does not convince himself. I am very clear this man is the worst human being. And he knows he is. He knows he cannot redeem himself – ever – for what he wrought on my family and my husband. He watches from the side lines – takes center stage when he can – and lies and pretends that he is a righteous do-gooder. If there is a God, he will surely punish Toxic #1. But I admit he is the master at convincing other people – weak people – the ones who stand back and watch Armageddon take place without stepping in. They are only slightly better than he.

Do I sound angry? I am. Do I sound bitter? Bitter is not how I would describe myself. I have a place I put this horrible experience. Not the dementia. We can handle the dementia. The continued abuse of the legal system – the extortion – that I cannot abide. I will never accept it. It is humanly wrong and in time, it will be fixed. I feel like the anger for it needs to be fed inside me so that I never forget – and so that I can help other people who come after us, who will surely need a champion in FTD. I have a place in my head the ugliness resides. Behind a locked door. The door pops open once in a while. I have to squeeze it all back in – force it away. Push with all my might to get the door to latch closed. Compartmentalizing so that I can go on.

Gaslighting applies to other people with other issues I know. Think about it: have you ever doubted yourself to quiet the inner voice you hear? (the one you must listen to) The one that tells you something is not right? (I did that a lot the first few years of FTD) Have you ever doubted yourself enough to think you are imagining things that indeed you are seeing? (Ask me about the purple poodle someday) In doing this, the Gaslighter tries to maintain control by presenting themselves as the sane person. Dementia has rounded up these nightmare humans and brought them to us.

There has been no sanity in FTD for us. No sane people. But wait. Maybe so – a new face – a new place – where people understand dementia and FTD – and the crazy characters who have inserted themselves into our private, agonizing drama. Is it possible the tide might turn?

I hope so.

Letters to Aunt Doris 2013

Aunt Doris is the best. She isn’t my aunt. She is Dave’s aunt. But I loved her before Dave got sick….and I REALLY loved her after he got FTD. She was the ONE person from the Bower side of the family who has really been there for me…even though she lives in Florida and I Iive in California. And she is over 90 years old.

This is an old letter. 2013. Since then, I would be appalled and embarrassed to tell you how much money the lawyers have taken from us. It’s much, much more.

Something has to change in our Court System. This system? It’s raping people like me.

2013      Hi Aunt Doris –

I so wish you lived closer. It isn’t right that I can’t stop in and have coffee with you! Instead, I just made myself a cup of coffee. You can make one now as you read this.

Your family sure takes good care of you. They are good at keeping tabs. And getting you a car. And taking you places. And making sure you arrive safely home. Lucky you.

I have put this off (responding to you with an update) a bit and I am not sure if I can explain why. It just seems so ridiculous that this situation – this excruciatingly painful situation – just goes on and on. It feels like I may never have a happy response to your email. It’s downright depressing. And it feels like somehow there must be something very wrong with me that I can’t control it…that it has spun so wildly out of my grasp. That it is costing my precious family so, so much. And I am standing here helpless. Not motionless, I promise you. I am a flurry of motion. But it is still the same. I terrible tragedy. For Dave. For me. And for the kids most of all.

It has been clear a long time to me (but not the whole time!) that David had nothing to do with this. He is and has been sick for a very long time now….5 years since diagnosis, 6 years since we lost him to dementia and probably more years before that we didn’t know why we were drowning. But we know with absolute certainty now. David is sick. Very sick. And he would NEVER have allowed any of this to happen to his family. Never.

That other people think he would somehow be ok with it will never make sense to us. That other people who care about him would let this happen to his family – we will never understand that either.

The simple recap is this:

In 2006, we knew something very, very bad was lurking. The personality changes alone were cause for extreme alarm. The drinking escalated, along with every ugly thing that goes with that. His ability to work was failing fast – money flying out the door, legal liability looming, his famous master-of-all-trades persona gone. I reacted as any brave (and scared to death) loving mother, wife and business partner would….I took defensive action to keep us safe and save our business. My sick husband did what his disease told him to do…point his finger at me. He did. And outsiders took action.

My friend Laura’s husband John died last week. He had FTD. Before he got sick, he was a capable lawyer and a loving husband and father. Before Laura understood what was wrong, John destroyed his business, to the degree they feared legal persecution for his actions. Instead of demanding Laura “give him back his business” (like Andrea did to me) the people around them helped them redistribute his clients and close the doors. When John’s brother took him to the bank and realized John was trying to withdraw large amounts of money, he called Laura. And stopped John when Laura asked him to. When John crashed the car, his friends took away his keys and drove him places – instead of insisting Laura give the car back (like Dave Williams did to me). When John asked his family to take him to lawyers, they picked him up and took him to the park instead.

At the funeral, Laura had written a five page thank you note to all of the supportive family and friends who physically and emotionally supported them to the end. It felt like the hundreds there admired her for her strength and the love of her family. She was heart broken but honored. It made me sad.

Because the exact opposite happened to us.

In 2010, Dave’s sister and friends took him to a divorce lawyers after demanding I “give Dave half the money!” The Judge threw the case out – demanded the family and friends stop inflicting more pain on an already stricken family. That Judge cried on the bench when he read his lengthy opinion. He denied the other sides fees. He asked us to make sure Dave was placed in an appropriate facility asap. Did I feel like I had won? Absolutely not. Not even for a second. Dave sat and played with the buttons on his shirt. Andrea was not there to hear the judges demands. I was angry.

The next day, David produced a gun I had no idea we had. With his speech now down to one word and only hand signals, he threatened to kill himself and us. I absolutely did not want to call the police as I feared what would happen next. I worried the police would shoot him foremost. Then I worried where he would end up. My father never came home after (deep into dementia himself) he threatened his wife….so I knew very clearly what could happen. Dave showed the police how he would shoot himself, then he gladly got into the back of the patrol car for a trip to the Emergency Room.

Thus started new accusations that I had somehow staged the gun scene. That I had somehow managed to lock Dave up against his will. That I had warehoused him.

The Care Team had placed Dave at a place very near Thea’s house. It was almost the best money could buy. But it was ugly. Ugly because yes, there was only one other person (his roommate) his age. Everyone else could have been 30 years older. I sat in the parking lot and sobbed hysterically. But the kids and I made the trek faithfully as he settled in. I was, but wasn’t surprised, to see him happy. The staff reported he was doing fine. Then one Saturday after hours, Andrea came in, screamed at the staff and forcibly removed him – without his medication or belongings. When the police, the facility and the family contacted her and Thea to ask where David was….they refused to tell anyone. It took three agonizing weeks, but Thea finally called me to request his toothbrush…and told me where he was.

Andrea had taken Dave to her house. So when she filed another lawsuit and asked to be named conservator of David’s Health – I said yes. I was happy she had stepped up to take care of him.

It didn’t last long. After a few months, with David breaking into her neighbors houses, damaging her property and doing who knows what else, she placed him herself in an Facility called Autumn Years. Requiring me to pay of course. Which I did.

What happened next has to be summed up in dollars. It seems unloving and it is easy to criticize, but Dave’s lifetime commitment to fiscal soundness could never be ignored. And mine. I have always been a good steward of the money. I learned everything I know from David. We worked together, side by side for 25 years before FTD came to our house. I know what David would have wanted and what he expected. We have everything written down and documented. Andrea hardly knew her brother. And the lawyers who have taken her name and run it underground never met my well husband.

Since Andrea and Dave Williams first demanded I give them money in 2009, they have forced me to spend $250,000 on lawyers and $180,000 on completely unnecessary care for David. David himself managed to waste about $200,000 in worthless items and property etc before I could stop him.

As of today, I have mortgaged the house to the fullest. I have spent the kids college fund. I have used up completely the business reserve and I have spent our savings down to zero. Meanwhile, property values are still at an all time low, we have no insurance, life or disability and we still will never qualify for State Aid of any sort.

Here is what I know:

– If I had agreed to a lawyers demands in 2009 (two years AFTER Dave was diagnosed) to give Dave “half the money” – I would have had to liquidate the business and take a 70% loss. We do not have a doughnut shop that we can sell and split. We have real estate that generates a monthly cash flow that far exceeds it’s value during the worst recession in 50 years. The “other” property we have is almost worthless – vacant lots aren’t selling very well these days. And in 2009, if I had thrown my hands up, the boys would never have gone to college, we would have lost the house and all of the business and I would be without income. Dave would have spent or given away all of his share immediately.

– If I had agreed to the divorce demand in 2010, I would have liquidated the business, lost everything and Dave’s share would have been less than $500,000. At the rate Andrea is spending our money (and almost none of hers should be noted) he would have less than two years of care left. He will outlive that.

– If I had agreed to the Conservatorship demand Andrea filed in May 2011, I would be equally broke. And Dave would be….dead? I have cannot imagine where he would be.

Here is where we are:

– Andrea (with Thea’s approval) continues to allow lawyers unethical but lawful billing of our hard earned assets to the tune of $100,000 just this month. She pays nothing. Thea pays nothing.

– I continue to pay $12,000 per month (this is down from Andrea committing us to $20,000 per month) for Dave’s care which should cost about $7,000. Thanks to the rentals, I can afford that, but not if I start to sell them. The other side does not care.

– Warren has hired his own lawyer (that makes 5 lawyers at once, him, me, Dave, Andrea and the Outside Conservator) to ask to be his father’s conservator.

– We have court dates October 30 and Nov 5. The lawyers fees alone for those court dates will be twice/three times what Andrea makes in a year.

The emotional turmoil of the past 6 years has been tremendous. On me and the kids. Our lives have been threatened. Our business has been threatened. Our love for our father/husband has been assassinated. No family should ever have to go through this. We can’t imagine why we have. What we did to deserve it. And the worst thing is we lost Dave. Who was a tremendous husband and father. We miss him terribly. He would hate all of this, every inch of it. Anyone who has supported any of it, never knew David.

My David would never have wanted me to turn and run. He would have wanted me to fight for what he and I created and loved.

Here is the post script to Laura’s John. John was diagnosed just last year. He did not die the “normal FTD way”. If he had it would have been years in the future. He took a bottle of medication and killed himself. He had done enough to hurt his family and he did not want to go on. He told them he loved them. He said his goodbyes. He lived a good life. He was done.

Lynn

Funerals and FTD

This is a post from my draft file. I can’t believe it’s been almost 6 years since Paul died. I still wonder if Paul would have been The Voice Of Reason if he had lived. Would he have had the courage to stop the annihilation that happened next?

May 15, 2009

Funerals and FTD

My Father-in-law, Dr. Paul, may have been the last of the old time country doctors….except that he spent his medical career in a big town – a suburb of Los Angeles. He wore a bow tie, made house calls and was generally known as the kindest, most concerned man in town. He was married over 60 years to his college sweetheart – a love match that spanned generations.

Starting with a broken foot he casted for me 30 years ago (skydiving- he never questioned my sanity), my relationship with him was perfect. I considered myself a lotto winner in the parents-in-law contest. He was the best man at our wedding 25 years ago. Years and years flew by with my husband David and I interacting with his parents in many ways. Good ways.
That Dr. Paul died, at the age of 84, of a heart condition seemed almost surprising. He had ordered two sets of learning materials a month before – Advanced Calculus and Religious Studies. His mind was still searching, still learning, still healthy.

My husband, his son, was diagnosed two years ago with FTD – Semantic Dementia. He loved and admired his father as much as any son could. He spent his life emulating this parent. He couldn’t quite pull off the doctor part…but he was his father in many, many ways.

Was. Before FTD changed him completely.

The disease has made my husband consider me his mortal enemy. I understand that the disease made my wonderful husband hate me…but the person who was furious at me when his father died (add it to a very long list of complaints that are absolutely real to him and just plain excruciating to me) is still here. In my house. Glaring at me and acting like a willful, destructive, addicted teenager.

This FTD person put on his tuxedo yesterday morning. With a Hawaiian shirt underneath and leather topsiders. I reminded him of his new brown suit in the closet. And out the door he went in his tux.

I shrugged.

My three wonderful teenagers rode with me to the church. They instinctively knew to stay near me. I felt their support. I needed it. Hundreds of people came, most of which I have known for thirty years. I looked around me and realized our drama, this FTD, didn’t change the lives of all the people who loved my husband’s father…at least not on the outside.

But they knew. They didn’t talk about. They didn’t ask questions. We were, after all there for Dr. Paul, not for his son. But I couldn’t help thinking…. not so fast. Their friends and our friends? They knew. And especially the friends of ours who came…who did they come for? Maybe they came for both.

One of the speakers – a 40 year friend of Dr. Paul said something that my FTD radar latched onto. He was telling the story of David’s love for his father. About how the two of them made adventures together. He related how much David was like his father. He used the words “He was quite a guy. That David was amazing”.  It was a slip but I heard it loudly.

And then more stories of Dr. Paul.

It surprised me when a realization sprung suddenly into my head. My wonderful, caring father-in-law – the one who people told story after story of compassion and understanding about at his memorial…had never talked to me about his son having FTD. He had never asked me how this family was surviving this barrage of illness that invaded our lives years ago. He never took my hand and told me he was sorry.

I am not mad. Just sad. And alone.

At the “Martini Luncheon” afterwards, I watched David interact with the guests, glass of wine in his hand throughout. He can barely speak now, but I long ago got over being surprised at how other people play that word guessing game with him. I think he enjoyed himself.

I spoke to so many people about Dr. Paul and his wonderful life. We stayed until the end. I hugged my children and thanked them for being there and standing tall.

David did not come home again last night. If the pattern holds, today….this week…will be especially hard for him. He worked very hard to appear as normal as possible yesterday – it will affect him. And us. We are braced for another storm. It can break over our heads at any moment.

I decided that my outlook on the end of my father-in-laws life is surely affected by FTD. I did not cry yesterday. My view of Dr. Paul’s life is that he was lucky. He did everything he wanted to do (except maybe relearn advanced calculus). He loved his wife for decades. He traveled everywhere he wanted to go. His children adored and admired him until the end. He died revered by so many people. His family loved and respected him until the end.

From where I sit – all that seems like a very nice way to live…and to die.

When Dementia is a Rip Tide

I’m glad I didn’t know what was coming. If I had…..I can’t imagine it. This horror – being pulled out to sea, to deep, dark, churning water, all unknown. No one should have to live this way.

I haven’t written because I can’t. It’s not writers block. It’s not time or place. It’s because more bad has happened. Worse bad. The kind of bad that leaves me gasping for breath. Flipped over on my back so I can breath as the waves take me out.

The kind of bad that makes me feel worthless and afraid.

I have a clear vision of my husband David saying to me “I have to go. You have to take care of our family!” He never did. He left for good and he never knew he was going. But the memory of him I carry with me did. Tears spring to my eyes when I picture his urgency – and his belief that I can take care of his children. And myself. And resolve takes over my heart.

For FTD, the Court system and the Medical Community are not just miles apart – they are on different planets. The Courts – lawyers who justify any means to win under any situation – and judges who can’t eek out the real vs the bullshit – it’s unconscionable. But don’t tell me Karma is a bitch. These people will never get back the destruction they have cast upon me, the kids and David himself.

It is all about the money. It is shameful. It is inhuman. And now I can’t bring myself to comprehend it.

My father, Roger, told me what to do when I was about 7 years old. “Swim parallel to the shore until the current releases you. Don’t fight it. If you fight it you could die.”

I’m swimming, dad.

Dumpster Diving and FTD

He loves me

They say your sense of smell is your sharpest memory recall mechanism. For me, missing my husband silenced years ago by FTD, it’s sound. Specifically, the voice of My David. Before his words got confused. And so did his brain. With David’s version of FTD, he first lost his ability to understand words…later he lost the ability to speak. 

Our house phones have a way to save messages. I have five from David.  Before. Sometimes I listen to them just to hear his voice.  In one, David describes the sunset and how much he misses me beside him. In another, he forwards a message from our daughter Rachel that is particularly sweet.

This account was written four years ago. Mayhem had already ensued. I was scared. And sad. But not too scared and sad to hop into a trash bin if need be!

January 2009   Dumpster Diving for FTD

There are at least three messages saved on my cell phone from my husband that become more and more important to me as time goes on.

“I love you! I love you! I love you!”  This message is at least two years old. That’s the one that makes a tear run down my check every 90 days – when my phone forces me to listen to it again in order to save it again.

Yes. I have been worried those messages of him – when he could still talk and before he decided I was his worst enemy – would somehow disappear. I even have it on my to-do list to figure out how to get them out of my phone and into something permanent.

I have been treating my phone very carefully. This morning, I put it in the deep front pocket of my sweatshirt – just so that it would be safe as I cleaned up the house the kids and I have stayed the last five days up in our local mountains. I should note that today could be considered a stressful day. Not counting the fact that it is New Year’s Eve and THAT is something I don’t want to allow myself to think too much about. But there is more.

My husband has been home alone for these five days – in the past he has always managed to accomplish something destructive while I am gone. He refuses to come with us. We are not sure how we could handle him if he did. We are standing on a sharp edge with this – hoping he can’t manage to create chaos…but also hoping he can still manage alone. It all feels wrong.  Regardless, it was our first “vacation” in three years. And yes, I spent the entire time alternately worrying about him and then mourning the life we had. I miss him very much.

About 1980

Today it was time to come home and face the music. It is scary to me, very scary. Given a choice, I would have stayed away. But I do not have choices like that in my life right now. So we packed up. Cleaned. Did laundry. Locked up. Had #1 son take the trash to the dump station – he in a separate vehicle on his way off the mountain.

As soon as I pulled out, I reached for my phone. No phone. I turned around immediately to go back and look for it.

You know how that is when you distinctly remember putting something somewhere? I checked my pockets 10 times, hoping somehow it would reappear. I looked over, under and inside. Of everything.  It was when I found myself looking in drawers I hadn’t opened today that I knew where it had to be.

In the trash.

There was a part of me that said “Forget it! Buy a new phone!” And the other part of me that said “You have to go look. You will never forgive yourself if you don’t.”

One problem. There are 50 large trash dumpster bins – you know..the kind with wheels…and gross disgusting stuff inside? With people pulling up next to me and heaving in another five bags as I stand at the edge of the bin – forlornly looking in?

The son is out of range now and I can’t contact him to tell me where approximately he threw the trash. So what can do? Stand there and cry. Or start ripping open bags. It is amazing how you know immediately whether or not trash is yours once you make the commitment to examine it close up. I went through every single bin. The trash truck came in and circled. People gave me strange looks. I found myself explaining to a woman next to me that I had lost my phone…and then I realized she was rummaging through the trash looking for treasures. No wonder she gave me a knowing look.

I finally got my poor son on the phone. And yes I screamed at him for leaving me to solve my problem. Why do I have to face every crisis alone! (For the record- he has helped me face more than his share of FTD crap)

And ok. This story has a happy ending. As happy as a poor family losing their 53 year old father to FTD can have. I found our bag. And there was my phone. Waiting patiently for me to rescue it.

The next time my phone tells me I have to resave messages – I will take a deep breath right when I hear his voice exclaim “I love you!”

And I will be thankful for it.

2009

2013: Technology has changed just since I wrote this account. Now we save pictures, texts, and messages. It’s easy. Easy is good. You never know when tomorrow will be the last day. Save your moments. You may need them!

A Widow….and Married?

2013: Last week I had to go to a Ear Nose and Throat doctor about a persistent problem I have been having. At some deep level that other single parents will certainly get, I am afraid to go to the doctor. Afraid a six month sore throat will morph into Cancer or something else that will kill me before my husband dies of dementia, leaving our kids parentless. But that is a blog for another time. Today’s is about one little word. On the form.

I’ve seen it before. And I admit I have hesitated – hovered really – over it. Not sure for a moment. And then in the past, I have always checked the “Married” box. This time, much to my own amazement, I checked “Widow”. And then as an afterthought, I checked Married too.

My eyes welled up and a single tear plopped onto the form. My intention was to tell the doctor ahead of time the answer to that question they ask when you have ongoing sickness….”How’s your stress level?” they say. I never say the truth – that it is off the charts. I always lie and say I am fine.

Maybe this was my way of trying to give him the message.

Here is an account of another time – me and FTD and forms at the doctors office. It was 2009 and my husband had hurt his knee. His soon-to-be-Toxic Friends were taking him motorcycling for Thanksgiving the next week so I was worried.

David on a clear day

November 2009  Visit to Dr Ortho

With FTD in my house, I have learned to just do whatever comes next. I have learned not to look too far into the what-ifs and the how-comes.

My daughter informs me “Dad hurt himself.” She noticed him limping badly with his decades old knee brace applied to his knee. I go to him while he watches TV and ask him about it. “Bad!” he exclaims. Because I know he has refilled an outside water fountain earlier (yes, I was very surprised to see him doing it, he rarely does household jobs these days) I make a guess “Did you hurt your knee jumping over the brick wall to drain the fountain?” I say. “Yes!” (Everything is said with great enthusiasm these days.)

So I make an appointment with an Orthopedic doctor we know who has treated our family for various broken bones over the years. On appointment day I find him waiting in the driveway -it looks like he has been there for some time. We ride together in silence as is our new way – far removed from the couple who used to talk and talk and talk – always.

He has a new habit of unlatching his seatbelt as soon as I cross into any parking lot. It makes me automatically fear he will also try to get out of the car at the next moment. I go very slow in parking lots now – just in case.

He does burst from the car as I drift into a parking spot. I have a moment when I think I just ran over his foot. Instead, I find him signing in at the doctor’s front office. The receptionist has been warned by me about FTD beforehand. I see it in her face as she tries to hand me the clipboard. He grabs it and sits.

“Want some help?” I say, knowing there is no way he is going to hand it to me. At this point in FTD he is hellbent on not allowing me to help him. Like a small child…”I can do it myself mom!” He ignores me. And starts to fill it out. I open my book but I am not reading. I am watching him in my peripheral vision. I am very curious. He takes a long time. I start to fidget. “Want me to finish?” I say in my nicest possible voice (I am starting to worry they are going to think we left.)

Finally I take it from him as gently as possible.  “I’ll just give it back to them,”  I say. I stand at the desk and look. Oh my. We have scribbles. For some reason this surprises me. And it hurts. I am momentarily shocked. He can’t write his address, let alone check any little boxes or explain his injury. I don’t even know where to start. I whisper, “What do you really need?” “Your phone number and medications he is taking. I’ll call you if I need anything” she whispers back.

I hand her some information I have brought that describes FTD. I ask her to please make sure the doctor has a moment to review it before he talks to us. I am worried about embarrassing my husband – I can see she gets that.

We wait.

At last – an exam room. The nurse comes in and asks him questions. She talks loudly and slowly. I notice this error – I wonder if he does. He can’t answer. I give him a chance. He tries. And not because he can’t hear. His form of FTD is the Semantic version. I can easily see (have for years) how the meaning of words escapes him. She looks at me. I fill her in. She leaves.

My husband immediately starts rummaging through the exam room drawers. He finds the plastic knee model. This is exactly what he would have done pre-FTD. The doctor laughs at this when he comes in.

“Frontotemporal Dementia” he says. “Fill me in.” I find myself wondering what to say. I realize later that being in a doctors office with my husband takes me straight back to the 50 or so appointments I have been to with him since we began this FTD journey – all of which he has either gone all out or at least started the diatribe about how bad and crazy and sick I am. It’s like being stabbed in the gut, over and over. I am understandably nervous about saying the wrong thing and firing the starting gun on that.

Dr Never-Prepared takes out the information I left for him and starts to read outloud from it. Then he hands it to my husband. I can’t help but be horrified.I am still trying to protect my precious husband from people who should know better.

My husband proceeds to try to tell the doctor in his halting and very limited speech that his talking is bad but everything else is just fine. “Brain good!” he says. I don’t correct him.

He says something to the doctor while making a cutting motion near his hip. “Ohhhhh, I see” says the doctor, then he turns to me: “I have no idea what he is trying to say.”  It does surprise even me just how often (pretty much 100%) I know exactly what he is trying to say. So I interpret. “Honey, are you telling him you think your vasectomy caused the FTD?”

“Yes!”

And so it goes. This doctor likes to chat – I am trying to make sure we are clear on what comes next, eager to get this appointment over with before it turns into something bad. Torn meniscus he thinks. Can’t be sure without an MRI. MRI leads to surgery. Surgery is good to preserve his knee for the next “40 years”. He looks at me as he says it. I discreetly shake my head. “Or ten years.” he says. I shake my head again. “Probably surgery is not what you want at this point.” Now I shake my head in agreement.

“How do you feel about him riding a motorcycle in the desert next week?” I ask. “Absolutely not.” he says. I ask, “How do you feel about it in light of the illness?”(I know this doctor is a live-and-let-live kind of a guy.) “Ride like the wind!” he says. So I make him go over three times what must be done to keep the knee from coming unhinged for riding. The doctor wants him to wrap it tight, wear the brace and “maybe even apply some duct tape.”

He makes the mistake of saying “Well, you’ll be there to watch him and make sure, right?” He has pushed a very sensitive button without having any idea.

Not exactly. And to explain that my husband prefers his drinking buddies to his family for the holiday is just too much. I can’t. It wounds me to talk about it. And now my husband is getting that hateful look in his eye and pointing at me. The my-wife-is-poisonous diatribe is warming up. Here it comes….

I hustle us out the door. Another silent ride home.

I feel a little anger seeping in. And sadness. Anger because I get no credit. I get only grief. And sadness because this is such a long, hard road we are on. One thing after another.

That night I see he has removed the brace all together.

It makes me wonder…what will the next thing be? And then I stop myself. Whatever it is, we will just get through it.

2013: The knee ended up never being a problem. The Toxic Friends, yes. It was the last motorcycle trip though. Even they could not keep track of Dave anymore. It was a shining example of how they vilified his family for knowing he was unsafe to ride…and then realized themselves that we were right.

The Married/Widow thing? The ENT doctor didn’t notice, didn’t ask about my Stress. I think next time I will just leave that box blank.

“Roof Bad!”

David at home – before FTD

2013: FTD makes a brain think in very strange ways. You become very aware of that as the well-spouse….when suddenly the roof on your house is gone. I wrote this account in 2009, it was a time already when David could no longer work. His brain was telling him to keep our handyman working…so that he would not have to.  Of course, I had already been accused of “stealing Dave’s business!” (never mind I had worked as an equal partner for the past 20 years.) The irony of this story is that at the same time we had a tenant in one of our rentals. Her name was Carolyn. She was Psycho. She called me screaming that HER roof was leaking. At that very moment, water was flooding into my own house of dementia. I said nothing about that when I went out to her home…and found a damp spot next to the sliding glass door…seems she was just having a bad day and needed to shout. In a very strange way….I could relate!

“Roof Bad!” 2009

Four weeks ago, my husband, who speaks coherently very little, told me he wanted to use Jose to fix our “roof bad”. Just for the record. I have never seen unintended water in my house. I long ago put a mandatory moratorium on all projects – even the ones I wanted to do – since projects equal high stress here. Short of interior flash flooding, the roof would never be on my honey-do list. Not now when every day is difficult for us because of FTD.

On the outside, fixing a bad roof seems like a fairly benign idea. Especially to people who might be outside looking in to our life. They would see a guy who has always been a “project guy” and I wife who has withstood years of repairs and renovation. They would see a guy who sometimes was called McGyver by friends – he could fix anything and understood how everything worked. And a wife who grinned and bore it.

But whoa! When seen through FTD-colored glasses – this “little roof project” is a whole ‘nother thing!

Of course I said “No!” Loudly and longly – the main message being “Over my dead body!” And of course he did it anyway because with our life and FTD, he does everything I ask him not to and nothing I ask him to do.

You see, I knew what a project like this REALLY means.

Jose is a handyman who works on our rentals. None of the rentals have tile roofs. Jose has never worked on a tile roof before in his life. Ours is really big. IF I were going to do a roof job, and only if I absolutely had to….I would hire someone who was an expert on tile roofs. And if I just needed “something to keep me busy” our rentals have umpteen projects waiting to be done.

I know exactly what to expect from Jose. He is a really nice guy. Let me say it again. He is a really nice guy. But he is sloppy and late. In the past he or his guys have…..stepped through a ceiling (opps! He never did repair that.) Dropped a gallon of paint at the front door (opps, never did get the paint off the house or the wood door.) And ruined so many things I can’t list them.

There was no surprise for me when he filled up all of the household trashcans with roof tile – with all of my superhuman strength (and that of my two sons) we could not budge the garbage cans – even an inch. Two weeks – the trash accumulated. Then I found a large roofing nail in my tire.

Then it rained. And the wind blew. And yes, more rain is forecast this week.

And there is the whole safety and security thing. FTD has scared me. To the core. I crave calm in my life right now. I need simple. I avoid confrontation….hmmm….I can’t think of a more tense and problematic situation than to have the roof torn off of my house. And strangers hanging around. Through it all, I suspect my husband wants to prove to me this is a good thing…by leaving all of the doors unlocked….when nobody is here except those guys on the roof.

Before FTD. I guess outside Toxic people could not tell we were happily married.

Oh, and did I mention the part about death threats? Over the past 23 years, my husband and I have had our share of disgruntled tenants threaten to kill us. (We do evict people when they do not pay – this is an occupational hazard here in California, I think.) He was once held at knife point by a tenant. Long ago, we both agreed that any workers who worked on our rentals, would never come to our personal residence. We agreed that our safety was utmost and would be always respected. So much for that.

Oh…and did I tell you about my FTD spouses smear campaign? The one where he has told ANYONE who will listen (including Jose) what a complete witch I am and how I am ruining his life, stealing his money, refusing to have sex with him, yada, yada, yada. I think it is just excellent that I have people, who think I am the worst kind of person, roaming around my unlocked house, for months.

And financially…did I mention this is expensive? Did I need to say I am also feeling very insecure financially… that taking on a gazillion dollar project makes me sweat?

My husband has no idea why I am upset about this. Hello FTD.

I look at the piles of roof tile on my lawn (killing it of course) and my heart beats a little faster. I see the big checks going out every week…and my hands get clammy. I hear the pounding (I work from home – trying valiantly to do everything right now…because my husband has FTD and can’t anymore) and I try to block it out.

And I try to be calm. And I think….how will we ever get through this?! Lynn

2013: When I wrote this, I am glad I had no idea just how much worse this was going to get. And how people around us (except the kids who were living this horror with me) would pretend I was over reacting and that it was me who was sick and not David.  And the expense? Ha Ha. The expense of this ridiculous project was a drop in the bucket to what came next. By the way….here in 2013….the roof still does not leak.

When Toxic Outsiders Mistake Dementia for Divorce

This post is from February 2011 email I sent to friends after Judge Waltz, OC California Superior Court announced his decision in the Divorce Case that my sick husband’s sister and  Toxic friend filed against me. I wish Judge Waltz knew what had happened since then and how the legal system has raped our family.

This is before FTD got us. Happy in paradise.

AND THERE THERE IS THAT SMILE…………….

Yesterday ran into today while the judge took extra care to decide the case. I glanced at Dave when the judge spoke his long and heartfelt decision. My husband gave me that half smile I know so well. My heart and mind went immediately back to the old Dave – the guy who could communicate with me completely with just that smile. I let myself go backwards for a nanosecond. Then I remembered that he looks just like him, but that guy isn’t there anymore. I cannot allow myself to wish that. There is a cloud of sadness that I seem to carry with me wherever I go. It is always waiting to engulf me.

This judge has a reputation that he takes almost all cases under submission. Not ours. He had written out his decision after seeing us yesterday. He said he worked on our case until 11 pm. He listened today to more having already made his decision. I never testified – they did not want me. The judge hardly looked at me during the three or so hours we spent in his courtroom – until he gave that lengthy decision. Then he spoke directly to me. I could tell his comments were meant to be heard by everyone. He was very clear. His eyes welled up and he paused to regain his composure when he spoke of our children and the cost of this disease and this court action to them.

He said he was dismissing the case. That to him, Dave was clearly, unequivocally incompetent – completely unable to do many things, including file a divorce. He said that Dave was clearly influenced by people who were causing him and his family great harm. He said he believed my actions were clearly correct in protecting our children, our business, our home and Dave from a horrible illness. He said he believed the declarations by people “helping” Dave were incorrect and untrue.

In closing he made a number of recommendations to me. A few of them were steps I have thought do need to be taken but haven’t. I have been afraid of the outsiders. But I nodded my head and made a promise to myself to do more of the hard things because I have to, not because I want to.

Dave sat playing with the thread on a button on his shirt.

Then the judge denied the opposing attorney’s repeated cries for more money. The judge noted that at over $110,000 – we have been raped by outsiders with an agenda and undue influence over a very sick man. It is about the money. But it’s more about the kids. And about Dave. All three kids came to court. I felt their unwavering support. They needed and wanted to be there for me. To hear the accusations and the testimony. To look into the faces of the people who have caused so much heartbreak to already broken hearts….the people who used to say they loved us but came to the courtroom to help a disease and a very sick man decimate his family. People who should never have judged us by jumping to untrue conclusions and creating facts to sustain a campaign against me.

I do not feel like it is a victory. There are no victories with this disease. There is only what is right in front of me. The next hurdle to make it over. The next problem to solve. The task of how to make sure we make the most of the time Dave has left.

And that overwhelming sadness that I will somehow rise above. Thank you for your support through this part of the journey. XO, Lynn

Note from 2013:

If I had let it, FTD would have bankrupted us in 2005-2006 when David tried to “run the business” his way. I am so thankful that I had worked as an equal partner in our business the 20 years before. I did not want to, but I took over. I have many FTD friends who could not do that and lost everything then. 

If I had let it, FTD would have bankrupted us in 2006-2007 when Toxic Friend demanded I rewrite our 1988 Trust so that Dave could “spend his half”.  Because my father had died of dementia many years before, David and I had talked at length about protecting our assets in the Trust. About our trust in the other to run the business, take care of our family and make the hard life decisions should one of us get dementia. 

If I had let it, FTD would have bankrupted us in 2010-2011 when this divorce was filed. I knew these people were completely irresponsible and clueless. And that the lawyers were in it for one thing: fees. I was right. You will see that when you see what happened next.

Here is what I know for sure. My David would be horrified to know this has gone on. That me and the kids have been tortured this way. That all of those times we scrimped and saved and all of the times we worked and worked…that all of that would go to lawyers and to his sister – the one he told me over and over: “NEVER trust her with money. She can’t even balance a check book!”