Update 10/16/15: Noticeable Behavior Changes

It's been a really long time since we've been able to write.  Luckily things have been pretty steady over the summer, and not much to report.  Until this week.  He seems to be going through a decline.  Luckily he is still very upbeat and happy to see us.  Conversation is normal.  But he seems to need a lot more redirection and reminders of what he is supposed to be doing.

We got a call earlier in the week from a staff member wondering if we've seen any of these behaviors.  I hadn't noticed anything our last visit, so I asked for examples.  She said things like looking at his shadow box over and over and over.  Going into another patient's room constantly and needing reminders that he's not supposed to be in there.  Even using that patient's bathroom instead of his own.  She informed me that he went into the bathroom and wouldn't get out for an hour.  And that it sometimes takes him an hour to arrive in the dining hall for a meal.  I was a little surprised and upset.  1) Some of these behaviors sounded pretty typical of him.  And with a quick reminder, he would be on his way.  I immediately wondered if this person was new and didn't understand that he might need extra prodding.  And that even though he appears young and fully functional, not to let that fool her.  2) I was upset to hear that he was locked in a bathroom for an hour or practically missed a meal.  The staff should be on top of that and not allow those things to happen.

So I went for a visit today.  Sure enough as I walked down the hall, I could see him outside by his room looking at the wall where his shadow box was hanging.  He was pointing out each photo and taking it in, in his OCD ritualistic way.  When he saw me coming he started beaming and said he was so glad I came today.  Then he went on to show me the shadow box as he usually does and wanted to know if I made it, as he usually asks.  I spent a lot of time on it, hoping he would like it and worrying if I was including the right things, or anything that might upset him.  I'm so glad to see that he finds comfort in looking at it.

So we went off to shoot pool.  He still seemed ok to me, but as the game progressed I noticed it was hard to get him to get up and take his turn.  He kept repeating what he was going to do "first I'm going to go to the bathroom, then I'll stop and get some coffee on the way back, and then I'll take my turn.  Unless you want to get me my coffee while I'm in the bathroom?"  I'd say sure, dad.  I'll get it for you when you get up.  Then he would just sit and light up another cigarette and repeat the whole thing 2 minutes later.  This went on for about 40 minutes.  Our typical re-directing wasn't doing a thing anymore.  And I'm not sure how to handle it.  I don't want to embarrass him, so we just sit and try to prod him along, but not make a big deal out of it or push too hard.  But he doesn't seem upset or bothered, so we let it go.  He did eventually finish his game and we were able to get him back in time for lunch.  But I just knew this was worse than we've seen and I realized I was seeing what the staff member who called me about it was seeing

He cooperated walking back like any other time.  He went back to his room to wash up for lunch.  He sat on his bed and started repeating how first he was going to comb his hair, then he was going to wash his hands, and then he was going to go to lunch.  After several minutes of this I realized he was stuck in a cycle again.  He just kept repeating what he was going to do, and then he would sit.  I tried offering to help him up to break the cycle, but he said no he could get up.  We tried turning the faucet on to get him to wash his hands, but that didn't help.  After about 20 minutes he asked if I could help him up and reached out his hand to me.  So I pulled him up and he was back on track. 

Watching someone stuck in the middle of an OCD ritual is just so hard and uncomfortable to watch.  He started talking about the wood grain in the laminate floor and how it ran perpendicular to the door and was following it with his finger.  Like it's another routine we don't normally witness.  Like it's something he needs to do before he gets up off the bed.  Before he started washing his hands, he had to first comb his hair and then he started pulling paper towels out of the dispenser and counting them aloud.  He needed 5 before he could proceed.

Now I completely understand what this nurse was talking about. If you're on a floor working with 30 other patients, you can't sit through these rituals and then drag him to lunch.  In the past all they had to do was come back and check on him every few minutes and remind him to come for a meal.  But now he needs more assistance than that. 

I do hope they realize that he is not being defiant or purposely being difficult.  He's not saying "no".  He agrees to everything he is asked to do.  But then he gets "stuck", and he can't follow through.  I remember reading about FTD, or maybe even dementia patients in general, and how they will start to have trouble completing a task that takes multiple steps.  They get stuck after the first step or thought.  I don't even think it's a matter of forgetting what they were going to do.  I think the brain just loses the signal of how to get from point A to point B.  This is going to get harder and harder to watch.

Bittersweet...

After a year on the market, dad's house finally sold!  Seeing it in the state it was once in, and all the issues it had, I never thought we'd be able to sell it for what it could be worth.  But we actually did better than I expected, so it was worth the wait.  Today is closing day. 

In hindsight, it probably was for the best that it took this long to sell.  It took me awhile to come to terms with this.  Selling his home and him having no idea.  It feels so wrong.  But I know he can never live on his own again, and it needed to be done.

As I am going through my dad's files today to pull out his original durable power of attorney papers that we will need for the title company tonight, I am reminded of what a painful day that was getting them signed.  One I will never forget.  There were so many times I felt like we were tricking him in to getting things done that we needed.  I know he didn't fully understand our requests, but we started to realize that he would do whatever we asked him to.  It was sad because we realized (too late) that this is what was going on with outsiders looking to take advantage of him.  And they had for years.  I know we had his best interest at stake, we were helping him, and it was for his own good.   But I still felt like I was being sneaky or doing something wrong.

After much research and soul-searching, meetings with lawyers I didn't fully trust and who could never seem to answer all my questions, we decided not to follow through with filing for guardianship.  I struggled with my dad being served papers notifying him that I would be his guardian, going through the courts for it - maybe even seeing my dad in court...not to mention it was costly, time-consuming, and would require us to go back through the court for every decision made.  I lost sleep over it and I couldn't do it, there had to be another way.  The lawyer I worked with kept pushing that was the only way.  So I kept searching for another answer.

I made an appointment with another elder-care attorney's office.  They were amazing.  Night and day between the two offices.  The receptionist who took my call was very knowledgeable and kind.  The lawyer returned my calls right away, got us in for a meeting right away.  And best of all, disagreed with what the other lawyer had advised.  Guardianship was the last thing we wanted to do, if we could avoid it.  If he was at all willing to come in and sign durable power of attorney papers, a living will, etc. for us, it would be so much simpler, much less costly, and much much quicker!  I was so relieved they were willing to go this route with me.

They got us in within the week, had the papers drawn up within days, and had us come back with our dad to sign everything.  This is the day that will always be ingrained in my brain.  It turned out to be a snow day for my kids.  So we all took a trip up to the lawyers office.  My sister had the task of surprising my dad in the morning and getting him out for one of his last appointments.  He of course obliged and was happy to get out and see us.  He showed up in his not so clean sweatpants, looking ragged, confused, but happy to see us and the kids. 

The lawyer did their best to explain why he was there and kept asking if he understood.  He would say yes.  But when asked if he could explain back why he was there, he couldn't.  Long uncomfortable pause, and then "no, I can't."  So once again, she would try to explain differently, in simpler shorter terms.  And when asked if he was ok with everything he'd say yes.  But when asked to repeat, silence again.  He just couldn't. It was heartbreaking and so uncomfortable.  You could feel the tension in the air, the lawyer trying so hard to get him to understand, the witness quietly waiting, my sister and I silently willing him to be able to put this into words, terrified they would not allow him to sign and force me to file for guardianship.  All I could think about was how brilliant he once was.  How successful he was in his business, you couldn't get anything past him.  His brain calculated numbers and figures with ease.  These are the things WE would go to HIM for.  And now he was stumped.  At a loss for words.  He truly just did not understand.  I think he was embarrassed and uncomfortable, but he still sat with pen in hand waiting to sign.  And then they let him, and so he did.

Now it allows us to take care of him and do things like sell his house without him being involved or even knowing about it.  And I feel so so guilty.  But I have to keep thinking my role is to take care of him and have his best interest at heart.  And I do, and I know we're doing the right thing.  It just feels so wrong and unfair that we have to.

I feel like with some of the stuff that happened in the end that just fell into place, that there had to have been a higher power watching over us. This lawyer was truly our savior.  They had so much compassion for the situation.  I feel like they put themselves at risk for this.

Turns out this visit was just in time.  The following week my dad was arrested while trying to get into parked cars looking to bum a cigarette, and from there he went straight to the VA Home.

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.