Confirming the Diagnosis through MRI 11/5/13

So the next step to confirm the diagnosis we already knew was to get him in for a MRI and PET Scan.  The MRI would show possible atrophy or shrinkage of the brain.  The PET Scan would capture images as the brain is actually functioning, not just structural images as shown in the MRI.

The hard part would be getting him to cooperate.  The MRI sounded relatively easy and was only supposed to take 20 minutes.  But getting him to stay still, not want to fidget, pace or smoke, would be the challenge.  The PET Scan was the hard one.  It was supposed to take 1 1/2 hours and he wasn't supposed to eat or drink anything for four hours before the test.  That seemed impossible, as he would never give up his morning coffee.  Smoking was also not recommended, and another impossibility for him.  Not to mention we had not yet told him about the diagnosis or why he was having these appointments in the first place. 

I was hoping to get both tests scheduled for the same day, since I was afraid if he went to one, he would refuse going back for the other.  Scheduling back to back appointments in different departments at the VA, seemed to be even more of a challenge than getting my dad to the tests.  I'd get through to one department to make one appointment, and by the time I'd get to the second one (which required several voicemails or phone calls in which it would ring endlessly and no one would answer) the other time slot would be taken and I'd have to start over.  I also had to work between our work and kids' school schedules.  I ended up getting the appointments scheduled for 10/30.  But I had no idea how we were going to get this to work.  I remember many nervous, sleepless nights.  Looking back I see I created so much extra stress.  I don't know why I was so stuck on scheduling them on the same day.  And as usual, things had their way of working out.  Just not as I planned.

Turns out 10/30 I ended up with strep throat and I had to reschedule his appointments (again).  I got him in for the MRI 11/5, and scheduled the PET for a later date.  My Uncle took him to the MRI, and he cooperated pretty well.  We got the call a couple days later that there was no need for the PET Scan.  The MRI told them everything they needed to know.  There were visible black areas or "holes" in the right frontal lobe.  At the age of 64, my dad's brain was shrinking.  Diagnosis complete.

My dad's FTD case is pretty text book and the MRI explains why:

The cell damage caused by frontotemporal dementia leads to tissue shrinkage and reduced function in the brain's frontal and temporal lobes, which control planning and judgment; emotions, speaking and understanding speech; and certain types of movement.

patients with frontal lobe injury fail to adhere to social norms.  In behavioral terms, patients with damage to the OFC, particularly in the right hemisphere, show a pattern of behavioral dyscontrol that may involve

1. either emotional blunting and emotional liability, including an insensitivity to others emotions,
2. deficient decision-making, including poor social and non-social judgment, lack of self-monitoring, and/or inflexibility, and
3. deficient goal-directed behavior, including apathy, disinhibition, task impersistence, and general disorganization.

Unlike other types of Dementia or Alzheimer's Disease, his memory was fine.  You could hold a normal conversation with him and have no idea anything was wrong.  He seemed a little "off" with his behaviors, but still as sharp as ever.  He could recall trivia, politics, sports, regular topics of conversation like normal.  His memory seemed fine.  The more I read about other families' stories, and I see how many misdiagnoses they've gone through, I think we were fortunate to find the 2 amazing doctors we did at the VA who were able to help us.  (And from everything else I saw and experienced with the facility, they may have been the only 2 amazing doctors there!)

October 11, 2013 - Diagnosis Day

After the Cognitive Assessment we were invited to come in for a meeting with an associate of the neuropsychologist that ordered the testing.  My siblings and one of my dad's brothers attended the meeting. 

I have to say this doctor or social worker, or whoever he was, may have been the most helpful and informative person we had worked with along the way.  He was the one who originally called asking about the alcohol after the cognitive testing.  But I talked to him several times after and he seemed very sure that they would have a real diagnosis for us and he would explain it to us in person. 

On this day I was nervous, apprehensive, but excited we were actually going to learn something.  I had no idea what he was going to tell us, and even after the appointment I didn't fully understand it.  I didn't understand what it meant yet, or what it could mean for me and my siblings, along with my own children.  I sometimes wish I could unlearn what I know now, or that we were still naïve to it all.  I still remember asking a little about the genetics behind it and being warned to NOT google search this!  Of course I didn't listen.  But yes, the information out there truly is terrifying. 

He told us they would order an MRI and a PET scan to look for changes in the brain to confirm their diagnosis, but they were already certain FTD was the answer.

Getting the diagnosis as quick as we did was the best thing for my dad.  And it helped us begin to unravel it all and get our plan in place for him.  As I think back to how things were back then, things seem so "easy" now.  He's where he needs to be and is being cared for.  And he is happy.

I have no idea how he made it on his own as long as he did.  It was a long road to get him diagnosed and in a safe place.  Unfortunately now that the burden and the craziness has been relieved and we can enjoy our visits with him, I still have the sinking feeling of how much longer do we have and how quickly is this going to change?

Managing the Finances of an FTD Patient

So after taking over my dad's finances, it became apparent how difficult they were going to be to manage.  There was no way to stop him or any of his new "friends" from accessing the money.  His social security check would go in, and in a matter of days it would be spent.  We decided to open up a new account and have his checks go to the new account.  Since it was an account he wasn't familiar with, I hoped that by transferring over money to his old account a little at a time, we could buy time to get his bills paid before all the money was gone each month.  He'd make daily trips to the bank to withdraw money.  And of course, he never went alone.  I'd get updates from a couple of the bank tellers that knew the situation to tell me XX came in with him again to take out money from his account.  I felt like it was only a matter of time before they discovered he had a new account, and there was nothing that could be done to keep them from accessing it. But he seemed to understand he was being given an "allowance" now and he was ok with me taking over his bills.  At least this way he was guaranteed to have utilities and groceries.  And he seemed to understand that.  It actually worked out pretty well for a little while.  Until this popped up one day...

I figured I'd paste in my email to my family, since it captures the frustration better than I can now 2 years later.

                            

RE: An Overdraft Notice is Available Online (WTF)

Sent: Friday, November 15, 2013 10:30 AM
what?!?

 

11/13/2013

Auto Deduct

PROG DIRECT INS INS PREM

190.66

I don't even know what this is for! There's nothing to click on for more detail. I've never seen this before.  Is this that insurance X was talking about - she had a policy set up with her and him?  So of course he's paying it.  Am I supposed to call her and tell her to cancel?  Is it really $200 a month?  This is just a never ending battle and I want to throw my hands up and say forget it.  Now he's in the hole $200.  Is he going to keep getting NSF fees until 11/20 when his SS comes in?  Well hey, I called the lawyer on Fri and again on Monday.  at least he's called me back....NOT. It's only been a week.

 

Sent: Friday, November 15, 2013 11:26 AM
I called the bank to see how many more fees he's going to incur.  She said he'll get another $28 on Monday, and then his SS should be in before the next one.

 

I asked about any accounts I can put myself on with him where he can't access the money and she said there are no options without guardianship or power of attorney.

 

Maybe I'll have to use one of his checks next time and write myself a large check, put it in my account and pay his bills that way.  What a pain.

 

I also called Progressive to see if I could find out more about the policy and how to cancel.  Of course they wouldn't give me much info. since I'm not on the account.  I explained the situation with dad and how he's being taken advantage of.  They said "hypothetically" I can't do anything, and neither can dad.  X set herself up as the primary policy holder and dad as the secondary.  So even if he wanted to cancel, he couldn't without her approval.  Basically all we can do is set up a stop payment with the bank and eventually it will get canceled that way.  Silver lining is he assured me this would impact her credit and not his.

 

A couple months later I was able to close these accounts down completely and open up a new joint account between my dad and his children at a new bank.  He didn't know how to access it, but didn't need to.  We took him out for his errands, brought him his food, and not too long after he was placed in the VA Home.  Now his finances are a breeze, and we are so fortunate he is able to be where he is.

 

He unfortunately received a call from X about six months later while he was at the VA Home. She wanted him to pay the outstanding insurance that we put a stop payment on and apparently was impacting her credit now.  How she thought he would be able to access funds while he was sick and living in a nursing home is beyond me.  What goes around comes around lady.

 

 

 

Cognitive Assessment 10/1/13

It's been awhile since I've been on to update and fill in some of the holes leading to my dad's diagnosis with FTD.  After the appointment with the neuropsychologist, it was recommended we set up a cognitive/mental assessment at the VA.  This appointment took place on 10/1/13.  As always, it was nerve-racking getting him there.  Would he be home when we came to pick him up?  Would XX find out and talk him out of it?  Would he be unwilling to go?  Luckily when I showed up, he was agreeable as always, but just wanted to eat breakfast and have his coffee.  I hurried him out as quickly as I could, but we got stuck in the construction going downtown and got there a little late.  Also, as usual, he didn't ask questions about why he was there.  

 

I remember being nervous the whole time about whether he would agree to continue with the appointment.  Would he get frustrated and want to leave, or would they get frustrated with him for not cooperating?  My sister came to take over the 2nd shift and he kept coming out for smoke breaks and to talk to us.  He'd go out for a smoke, come back and tell us about it, and then say he was going to go back out for a smoke again.  It was so hard to get him back in that room.  I thought he'd never finish.  The test was supposed to take a couple hours.  It ended up taking 5.  I can't believe everyone cooperated that long and got it done.  It was a huge relief and we hoped it would get us one step closer to the answers we were searching for.

 

We weren't allowed in the room with him while he was testing, so we don't know too much about what went on.  Although it was evident that each person he had met with saw the odd behavior we were trying to describe.  We were told to call back later in the week for an update on how he did and what it might mean.

I got a call later that week to fill in some holes.  He asked a lot of questions about alcohol and his drinking habits, depression, etc.  I had a sinking feeling that all of this would lead to nothing.  We would never get an answer.  It wasn't alcohol, it wasn't depression, this wasn't out dad. 

 

 

Update - Quarterly Assessment Visit

It's been awhile since I've updated.  Luckily there is not a whole lot that has changed.  I met with the nursing home staff today for our quarterly assessment and he is still upbeat, easy going and active.  There is some new staff, so I'm adjusting to that, trying to sense how well they know him and understand his issues. 

The new head nurse read from the report the last nurse took before they left.  It was more detailed and thorough than I was used to hearing.  Maybe it was just her approach.  And she didn't have a lot to offer since it wasn't her report and she doesn't know him well yet.  But she mentioned that he is "still" on a bathroom schedule since he has had some incontinence and bowel incontinence issues.  That certainly got my attention.  Reading about FTD, the 2 biggest signs of an impending decline, and maybe a sign of the later stages of the disease, are incontinence and refusal to eat.  Luckily his appetite is still great.  But I was a little surprised and upset to hear this.  She spoke as if getting him on this schedule to remind him more frequently to go might help him improve.  I wanted to say that I knew what this was a sign of with the disease, and he wasn't going to "improve".  But I kept my mouth shut.

The activities coordinator is also new.  A male this time around, which actually may be better for him.  He seems like he may have been a vet himself, and that he does things that seem more "normal" to me.  He said my dad participates in activities daily.  I pictured the toddler-style music classes we witnessed in the past.  But when I asked what they do, he said he participates in the trivia and conversations.  He takes him outside every day - sometimes for walks, sometimes in the court yard just to sit.  He even said he considered taking him out to shoot pool and wondered if he'd like that.  I said he would love it!  When I was out with my dad later I even saw him outside pushing one of the other vets around for a walk.  So that was a good sign.  Maybe he can relate better to the vets and be more on their level.

They also said they had him on a watch period for a week in May to see if there were any issues: showering, behaviors, diet, incontinence, staying completely dressed, etc, etc.  And they said there were no issues and he passed everything.  He still gets annoyed with some of the other residents' behaviors, but he handles it well.  When I asked if he still spends a lot of time on his puzzle books, they all agreed that he spends a lot more time out of his room doing other things and socializing than he used to.  So he doesn't appear to work on them as much.  Looks like he has found a new routine for now.

After the meeting I took him out to shoot pool and ordered some sandwiches for lunch.  As usual, he kicked my butt.  He does repeat his routine a lot more than he used to.  I don't know if it's a forgetful/short-term memory thing or an OCD/comfort thing.  And he told me he was going to use the restroom about 30 times before he actually went.  That's going to make me nervous now that I know about the incontinence thing.  I hope we have more time before that gets worse.  He also seemed to keep forgetting that my husband was at work and my sister wasn't able to come.  He kept wondering when they were going to get there and I had to keep reminding them that they couldn't make it today.  It's sad, but the visits are still uplifting because he enjoys them and is generally just happy to be out.  So, as always after a visit, I'm exhausted but so happy I went.

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.