Continuing down the path to find a diagnosis...

We lucked out and got another appointment with the neuropsych dr. the following week on 9/23/13.  My uncle took him to this appointment.  He said he basically read from the summary sheet I wrote up to explain what we have been seeing.  It's so hard to explain the changes from before and after in a short appointment and get the severity across - all in front of the patient.  The more that I read about FTD and other families experiences with the disease, these symptoms sound like the classic textbook case.  Here were some points that were noted:

• Complete personality change over the past 5+ years. Has worsened in the past 6 mos - year.
• Everything he worked for over the years is gone - all investments and savings, life insurance policies - all cashed out.
• Almost $30,000 in credit card debt.
• Signs up for book clubs, DVD clubs, magazine subscriptions, sweepstakes scams - any junk mail he receives, he will send in a check and join.
• Liens filed on his business for unpaid payroll taxes.
• House looks like a hoarders nightmare with years worth of mail piled up.
• Doesn't appear to understand how to control the spending in his bank accounts - overdraws his account monthly, spends twice as much as is going in.
• A female is exploiting him and he consents to everything - checks written to her, credit cards opened for her, she keeps his car for her own personal use, goes into his bank with her so he can withdrawal money for her.
• Spends the day doing crossword puzzles, talks to himself, shuts down when you try to bring anything up, doesn't appear to comprehend the severity of the situation.
• Living conditions are unsafe, hygiene is bad, he is not the same person he once was.

These points were read to the doctor in front of my dad who didn't appear to react to any of them.  The neuropsych set up a cognitive assessment to aid in his diagnosis.

Upon leaving, my uncle did not know how my dad would react.  But it appeared to not phase him at all.  All he said on the way to the elevator was that he thought it went well...yet another point to add to the expanding list of strange behaviors.

One year in and a little hindsight

It's been a year since moving Dad into the VA Home. Sometimes I find it hard to believe it's been a year and when I think about how he was a year ago and how he is today, there's been some noticeable decline. But for now, as long as he still beams when he sees us come for a visit, and we can get him to laugh, and he's not terribly confused, we take that as a good day. 

There's something I've been meaning to post for a while now that still haunts me a little when I think about the signs that were right in front of me but had no idea what to make of it. We all knew dad was not right for a while but here's what was sort of brewing, approximately one year before we got his diagnosis for FTD.

From: Debra Thornsberry
Sent: Tuesday, September 18, 2012 3:19 PM
To: 'Denise Tomecko'; mom
Subject: dad

 

Today was indescribably uncomfortable, but I will try my best.
 

I thought he was going to be super shut down when I first got there. A nurse was in his room so I waited behind the curtain, he saw me and waved. I heard the nurse ask him a few things a few times and either he didn’t answer right away or I just couldn’t hear him well. I thought is he being uncooperative and avoiding? After she drew a bunch of blood and checked other signs, she left. So I took one look at his leg and it looks terrible. Can’t see any bones in his foot, or his ankle and the calf is a good half-size bigger than the other. Then I noticed that his other foot looked swollen to me. I asked him if he thought so too and he agreed. I asked if his right foot started off looking that way too and he said probably. I asked him all about medications and what he might have been doing around the time that this all started and he really didn’t know. It’s almost like he tunes me and the situation out. 

 

Shortly after I got there he needed to use the bathroom so I showed him where it was. While I was waiting in his room I couldn’t help but notice how dingy dirty his jeans were. Like that hadn’t been washed in over a month. Then on the table I saw his wallet with post it notes sticking out, his smokes, lighter, keys and some sort of free beer token. That’s always good to have on hand when going to the hospital! While he was out, his phone rang which I’m guessing was Colleen. She called a few times while we were there. All I’d hear him tell her were updates as he learned them.

 

Then they took him down to get his ultrasound so I waited around in his room. Once he came back, it was like he ripped his robe off and started jumping into his clothes. He said they didn’t see any clots so I guess we can get out of here. I’m like uh, I don’t think it works that way. the doctor will still have to review everything and release you. We can’t just leave! Pacing around, pacing, pacing, pacing. Fidgeting with everything. What do you suppose this does? What do you think this is for? like some kid. Clicking, pressing, turning the lights on and off, playing with the tv, playing with the sink and its motion sensor. Playing with everything! He just couldn’t sit! 

 

I tried to talk to him about stuff, Brett’s work, hospital stuff, tried asking him more stuff to get a clue as to what’s wrong with his foot/leg. Talked about Colleen. Asked if she’s still working downtown only to find out she hasn’t worked down here in years! She doesn’t work at all, so all that stuff she told his family was just a lie. She lives with her son and her “spaced out” daughter, which is how dad described her. Government pays Colleen what she needs to survive, I guess. Said she was in the navy and gets money from that too. So my radar is definitely up now. we have to make sure he’s got some sort of living will going before something serious happens. 

 

Dozens of times, he goes back to checking his phone, his watch, his IV bandages, poking, prodding, checking, asking when they’ll take it out and I thought he was ready to pull it out himself. I even joked with one of the doctor’s aides that all the standing and pacing he’s doing probably isn’t helping him elevate his leg like they want him to! When they finally came around with instructions and to release him, I’m not so sure he fully listened. He just seemed so rushed. For what? There’s no place he really needed to be that I was aware of. All the questions I would answer and all the stuff I witnessed him do and how he acted. 

 

Dad is like 62 going on 82. Almost a dementia/mental-82. It was really uncomfortable.

 

 

The contents of dad's pockets that day.

 

***

 

Look at all the signs! His strange and distracted behavior, his filthy clothes and mixed up priorities, and the woman who ultimately took him for all he was worth, all right there playing out in front of me that day.  I just didn't make the connection. None of us did. Not until almost a year later when his behavior became even worse and my sister found him living without utilities, in a filthy hoarding house, with an avalanche of unpaid bills on his table while he played crossword puzzles all day and roamed the neighborhood for cigarettes, that we finally realized we were in store for something pretty bad. 

 

All I can say, and I think I can speak for all of us, is we are so grateful that Dad is a Veteran and has found a new "home" this past year.