If we only knew then...

As you may have noticed, this blog is out of order.  So our random thoughts and posts are in order of when we wrote them, but not in sequential order of how they happened.  So it may be hard to follow.  But at this point we just wanted to get our thoughts down.  In the near future, we hope to switch to a new format that will help us put things back in order, so it will make a little more sense for someone that may stumble upon it.

But now that we've finally come full circle with explaining the process from pre-diagnosis to now, I thought I'd include some things that happened during the years long before the diagnosis.  Clearly related to the disease, but at the time we had no clue.  I hate how the word "dementia' is part of the FTD name.  It's so misleading and people don't really understand how it's different from other forms.  Near the end, yes they are all very similar.  The confusion, memory issues, incontinence, immobility, the refusal of food...but the beginning is so very different.  Different than most diseases people have seen.

I'd say a big turning point was in 2001, around the time of 9/11.  It seemed to be the start of a big depression for him.  It was gradual, and we eventually got to the point where he wanted nothing to do with anyone.  Particularly my mom's family. The sweetest, most caring and kind people you will ever know...and now he held an irrational grudge over them.  He wouldn't let them over the house for holiday or family dinners, and he wouldn't attend when we would move the event to another household.  And since he went back and forth between the silent treatment and insane and crazy outbursts & rage, no one wanted to confront him.  We tried to pretend everything was normal.  How ridiculous is that?  But he was not someone you ever wanted to start a confrontation with, especially with the way he was now.

During the holiday season of 2003 (a full 10 years before diagnosis), we started prepping him that I would be hosting Thanksgiving that year and that we really wanted him to come.  I don't think we got through to him.  But he ended up coming.  It was awkward, and we all tried to make polite conversation with him.  He left the room and sat in the kitchen alone, and was silent the rest of the night.  So we left him alone.

After he had left, we found a book left in our bathroom.  It was a new sports/reference type book.  On the inside cover it was addressed to my husband, and signed "your bud" with my dad's name.  Talk about unusual.  I didn't think my dad even knew how to shop.  My mom took care of all of that, and I don't think giving gifts was really on my dad's mind.  It was always just handled and he was just always too busy.  So this was just weird.  And a very unusual and personal thing coming from him.  To give some background, my dad always felt close to my husband.  My husband is a person that can talk to anyone and make them feel comfortable.  They had a lot of the same views, and he was easy to talk to.  Even when he shut everyone else out, he didn't seem to do it to him.  So this seemed like a weird cry for help.

A few weeks later we received a card in the mail.  It had no return address and it was addressed to my husband.  The writing on the envelope was chilling.  It looked like something from a psychopath/serial killer.  Like when you cut letters out of a magazine and they're all different sizes and fonts?  But this was hand written to look that way.  It was even whited out in sections, and re-written on top.  The card on the inside said "Christmas is a time for being with family"  and it was not signed. 

I was kind of terrified for awhile.  But the more we put things together and researched the handwriting, we're certain it came from my dad.  If you've seen from prior posts, he was meticulous.  He would never white-out on a card and then send it anyway.  His writing was even and perfect, as if he used a ruler all the time.  This was so unlike him, and obviously disguised on purpose.  Another cry for help.

But it's hard to help someone that made things so hard and refused us when we tried reaching out, any time we tried.  Little did we know you just can't get through when it's a sickness like this.  His brain was already changing, at least a full 10 years before we finally figured out why.

Getting into the VA Home

Everything seems so smooth now, that I forget how hard it once was.  I can’t believe this was 2 years ago now.  And thinking back on it, I can’t believe some of the craziness we went through.  Sometimes I think it’s probably best I waited 2 years to go back and revisit some of this stuff.  It’s such a relief that we are in a better place.  The disease is worse, and it’s hard to watch the decline.  But it’s a blessing he is where he is, and it’s nice to be reminded of that sometimes.

We had known throughout the diagnosis process that we would need to find a place for my dad to live.  We knew we couldn’t take care of him and keep an eye on him 24x7 , not to mention keep him away from the bad behaviors he so badly craved and obsessed over  every 15 seconds, like alcohol, roaming the streets looking for cigarettes, spending money...

But we had no idea how we would get him to agree to go, how he would afford it, and what place would be willing to put up with his behaviors.  He was still young, active (only 64), and looked relatively healthy compared to anyone else being placed on a wait list for nursing homes.  We weren’t sure where he would fit in.

Our uncle suggested the VA Home in Sandusky.  They had already visited it a few months back and had good things to say about it.  But it was so far.  And I felt weird about going with the first option without doing some more research.  I overanalyze everything, so I wanted this to be no different, to help ease my conscience.

I made lots of phone calls, learned more than I ever wanted to know at my age about Medicare (even though he was still a year away from eligibility), looked into how we could increase his social security/VA benefits, and very soon realized my uncle was right.  Besides the outrageous cost that my dad could not afford, there was not one single facility that would allow smoking.  To me, I liked the idea of a nice and updated assisted living facility that would be close by.  But I knew he would never be happy if he couldn’t smoke.  And they would never be able to keep him safe and on-site, because he’d be in constant search of a cigarette.  They’d kick him out in no time.

So our research went back to the VA Home.  The application process seemed simple enough.  Just some forms to fill out, some medical records needed, and voila, right?  WRONG!!!  Being stuck in the middle of the VA (US Department of Veterans Affairs) where he got his medical care and diagnosis from and is federally funded and the VA Home in Sandusky, which is state funded was one of the most ridiculous experiences I can ever remember going through.

After I submitted the application and the paperwork and followed all the instructions on the VA Home’s website, (as well as from numerous phone calls with the Administrative side of the facility itself) I was told it could be a month or so before we heard anything.  By the time I heard back, I was told they didn’t have any of the medical records they needed.  Well that’s weird, I thought.  But I figured ok, I’ll just call over to the VA myself and get them to send the records again. 

I don’t know if I’ve described before what it’s like trying to get someone on the phone from the VA before.  But it’s a crazy process.  Voice mail?  Who needs voicemail when you can call and listen to a ringer over and over and over again, only to have it click off and hang up on you?  And when you do finally get ahold of someone, you are starting over from square one trying to explain the situation and what is needed.  Wouldn’t it be nice if they had a computer system they could just look up a patient in and catch up quickly?  Well. They. Don’t.  It takes several hoops to jump through to just get ahold of someone from his family doctor’s office and to get them to agree to forward any records they have over.  But when you do that, you find out they really don’t have any records to send anyway, other than maybe a recent flu shot.  Records?  Who needs records?  I still don’t understand why the real diagnosis from the initial neuropsych testing and the MRI showing the holes in his brain were not enough, but they weren’t. 

And ready for the kicker?  After all this time waiting for the application to be reviewed and told we needed more, and then tracking down what we could from the VA again, we were told that the information was now OUT OF DATE.  It was beyond 30 days and it was now TOO OLD…  Are you kidding me?  Are you saying he needs to go through this testing again?? Do you understand what we went through in the first place to GET him to these tests?  Do you realize you can’t even get an appointment with the VA without an 8 week wait?  I remember asking the social worker from the VA Home what happens if we can’t get everything they need, and she simply said well then he doesn’t get in.  She explained they need to be able to determine his correct level of care. That they are audited by the county board of health, and they check the dates.  It felt like I was trapped in some twilight zone.  There was no way to win this.  And even if we miraculously got them what they needed, after they reviewed everything, would they agree to let him in?  Would they find out about the alcoholism and say they can’t take him?  I can’t even remember it all now because I think I blocked it out.  But somehow, someway we scrapped together what they needed.  We got his doctors to sign what they needed to sign, fill in some physical BS stuff, and the VA Home FINALLY agreed they had what they needed.  We just needed to wait for their answer.

I don’t know that we ever got a YES, but we got an invitation to come check the place out.  So we scheduled a visit with my dad.   He said he was interested in checking it out.  As if it was a nice day trip we were taking him on.  We carefully tried to hint that he might want to live there, that he would have his meals cooked for him daily, he’d never run out of food, he’d have cigarettes, and his finances would be managed.  He’d have things to do.  He agreed he would like to see it, but didn’t know that he would want to stay there. 

We knew the VA Home has a few different levels of care.  We were hoping he would qualify for the assisted living where he would still have his freedom.  We did our best to coach him in advance.  We went over questions they might ask him, reminded him what he can still do on his own.  Gave him a cheat sheet of what medications he needs to take and when.  He seemed to get it, and we just crossed our fingers he would pass their tests and be willing to sign paperwork to enroll.  We had our POA papers, but I didn’t want to have to force him if he didn’t want to.  But I also knew he couldn’t stay where he was, and I didn’t know where else he could go.

I remember the day we picked him up.  He was dressed up in an outfit he used to wear for Christmas.  He had on his dress shoes and nice overcoat.  I was so relieved he wasn’t in his usual ripped up dirty sweats.  It made me so sad to see though, because he looked so normal and I felt like we were trying to trick him into leaving his home.

The drive down went ok.  We were so fortunate to have our uncle come with us, because the thought of getting him out of the house and kept calm the entire drive to Sandusky brought me a lot of anxiety.  He commented a lot about the scenery and told us about all the things he would like to do and try.  Things he never used to discuss, and I’m not completely sure these were really things he wanted to do, or if his brain was in such a positive phase from the disease (which was a nice change from the last 10 years) that anything and everything sounded good to him.

When we got into the assisted living meeting room, you could sense him shutting down.  He was very quiet and withdrawn.  He seemed like he didn’t want to be there, and I was praying he wouldn’t say he wanted to leave before we even started.  A nurse from that section talked with him a little to see if she felt he could handle living independently with them.  I think we were all a little naïve at how bad off he was.  We figured he’d gotten by on his own this long, and all he needed was a little extra care.  But the nurse came to speak with us after and said she did not think he could handle the assisted living.  They really are on their own.  It was more independent than I even realized.  They come and go as they please, rooms are inspected monthly…he’d probably leave site with the other guys and go to bars non-stop.  He’d spend money he didn’t have, and he’d probably burn his room down with a lit cigarette before it was inspected in a month’s time.  We were all a little disheartened that this nurse could pick up on his condition this quickly and knew he couldn’t handle it.  It was eye opening that he was worse than we were willing to accept.

So we went over to the nursing home side of the facility feeling dejected.  Because after seeing the assisted living, this just looked and smelled like a nursing home.  The residents were easily 20 years older than him, most in wheel chairs and not able to get around.  When we sat down to meet with the nurse from this side, we discovered they were interviewing us for the locked care section.  That was not what we were expecting.  Lock down at age 64?  How can we do this to him?  We convinced them to let us consider the regular nursing care instead during one of my dad’s many agitated smoke breaks.  He asked if we thought he’d take off and be confused and get lost.  We said no, he’s not like that and his sense of direction is perfectly fine.  So he agreed to walk us through that interview.  I hated to admit it, but it did seem like a better fit than assisted living, it was just hard to accept all in one day.  At least the residents still had their freedom, but it was a little harder for them to come and go.  And they still had all sorts of activities and group events he could participate in. 

We took a tour of the facility and I kept watching my dad, thinking he must feel like we’re walking around a hospital.  We saw the rooms that housed 2 to 4 people.  You could get on a wait list for a single room, but it took awhile (meaning people had to die to get to your turn, which was an unpleasant thought). It was difficult to swallow.  But he kept saying everything looked nice.  I don’t know if he meant nice as in I could live here, or nice as in this is a nice day trip tour.  I don’t know if he really got it.

We then met with their financial administrators and went over paperwork and applications and this was the scary part.  They had all the paperwork and applications and consent forms completed.  We just needed to sign them.  I didn’t know if he would or if he wanted to.  I knew I could talk him into it, because he could be talked into anything, but I hated to do that.  But whether he understood or not, he signed himself in.  He was all set.  So this was really it.  He passed.  We passed!   We just had to wait for a bed.   It was a weight lifted. We were done with our day trip and heading home.  But I couldn’t help but worry when the bed was available, how were we going to get him here to stay?

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.

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.

Getting Caught Up...

It’s been a long time since I’ve posted.  I’ve had thoughts over the past few months of what I wanted to write about so we wouldn’t forget later on.  But things just got too busy, and it got harder and harder to get back here.  I realized with my visit this past week that things have kind of come full circle since I last posted.  So that helped me come on here to get back on track.

Back in the Fall I started visiting my dad on my own for a short weekday visit while everyone else was at work and my kids were at school.  I was nervous about it at first.  I figured it would be awkward and I wouldn’t know what to talk about.  Plus I was afraid if he was having a bad day and hard to re-direct, that maybe I wouldn’t be able to get him back by myself.  He’s still my dad and I’m still the kid, so I find it hard being the one in charge.  If he tells me he wants to stay and shoot another game even when it’s time to leave, or that he wants me to get him his 1000^th cup of coffee, it’s hard for me to say no!  But it turns out I really enjoyed these visits.  He was so happy to see me and appreciative to get out and play pool.  Even though I’m really really bad.  He always helped tell me what I should shoot and was conversational about family and things.  He seemed genuinely interested.  Complete turnaround from before the disease.  I found myself looking forward to these one on one visits.  I’m grateful that we were able to figure this disease out when we did, or we’d never have this time to come to terms with everything.

These visits came to an abrupt halt when there was a flu epidemic running through his unit before Christmas.  He ended up getting it, but from my phone calls to the staff it sounded like he was fine and handled it well.  We still waited 3-4 weeks to get back there because it was spreading through the facility.  They even had to postpone the holiday party for families.  When we went back, he was a different person.  We had read that an illness can cause a setback.  That it takes so much energy to heal and get well, that everything else suffers – they are more confused and appear worse-off with the dementia.  It’s unclear if these setbacks are temporary or permanent. 

He definitely had a setback.  He was very tired, didn’t really light up when seeing us, was more confused and very hard to get moving.  He’d get “stuck” when he was supposed to do something like take his turn.  He’d say ok, but then continue to just sit.  His cough was horrible and his appetite seemed weak.  The snacks he usually goes through in less than a week were still there from our previous visits.  It was sad and scary that maybe the visits we looked forward to, were now going to change.  When it was time to leave, he was very hard to get back.  He was just “stuck”. 

After Christmas we visited and brought him a tablet.  We put a few games on it, hoping it would give him something else to do.  We also set up an email account, but figured that might be something more advanced he might not be able to handle.  It turns out it just wasn’t something he was able to connect with.  I really think if we had given it to him before he got the flu, he may have been able to handle it.  But not after the recent setback.  These last couple visits were more sad and depressing.  But it was encouraging that he did seem a little improved each time.

I called to speak to the social worker to see if they’d noticed the decline and if they could tell us anything more.  They had basically seen what we had, but kept saying it was normal.  She also said that sometimes he gets confused and will come out not completely dressed, and that morning at breakfast he showed up without his pants on.  She said it was no big deal, that it’s very normal with the disease.  They just re-directed him back to his room and helped him get dressed.  I get that it is “normal”, but it’s not normal for him.  To me it’s another regression.  And he’s 65, not 85.  So it’s really hard to hear.

 

Now it’s been about 2 months since he was sick.  And I think it’s safe to say he has turned the corner and bounced back.  Yes he is still a little more confused, and I think in general the disease is still slowly progressing.  But I went for a solo visit again this week and he was great.  So happy and upbeat, he kept thanking me for coming and he didn’t act tired or “scary”.  It was such a huge relief.  Because seeing him the way he was before was just hard.  I know he’s going to get worse, but we hope we can have more time with him before that happens.

There have been some changes in the past few weeks.  The activities coordinator from his unit retired, so they hired someone new.  I’ve heard that she is really good and has been getting the guys involved in different things.  When I got there this week, all the guys were in the dining hall finishing up the personal pizzas she had helped them make.  It looked so fun and seemed like a really good idea.  I’m interested to hear more about what she does with them.  Especially as the weather gets nicer and they can go outside again.

My dad also had the opportunity to move into a single room.  I wasn’t sure if he would want to because he’s so set on his routine.  But he ended up making the switch, and we are all so happy with it.  Now we can bring some more personal things for him to hang up.  He has a nice view of the courtyard and was already commenting on certain people he sees out there regularly.  So it seems he already has a new routine and is doing well with the move.

 

So a couple things to note from my visit this week…after I pulled him out of the lunch room, we got his pool stick and started to head out.  He got sidetracked by the big screen tv because Dr. Oz was on and he really likes that show now.  I remember him saying that in the Fall, so I guess it’s part of his daily routine to watch Dr. Oz now.  I like to hear these little tidbits about his day.  It helps to know he’s doing something and has things to look forward to.

It was hard to get him on task when it was time to leave.  I can’t even explain why it’s so hard.  It just is.  It takes a lot of re-directing and being firm.  Then, once you think he gets it and is ready to comply, he’ll ask again “so do you want to shoot one more game?” And then you have to explain again how he’s going to be late for lunch.  And he’ll say ok, and then sit down and crack open a can of pop and light up a cigarette…I finally got him to agree to come by talking him into getting a coffee on the walk back.  

Once we finally got going he stopped by the tv again to watch a St. Jude commercial.  They were showing kids with cancer and it was hard for me to watch.  I didn’t expect it to phase him.  After all, the emotional feeling is supposed to be long gone with FTD.  But he stopped to watch and commented how hard it is to see those kids like that.  I was surprised, and almost wanted to change the subject before he ruined the moment and said something inappropriate to follow it up.  But it seemed genuine so I’ll take it. 

 

Then that was ruined on the walk back as we passed a large woman riding a floor cleaner.  She stopped to let us pass, smiled and said hi.  As we passed dad was like “Wow.  That woman is almost as big as that floor machine!” I pray she did not hear.  From an outsider it would be almost comical, because he’s not looking too slim himself these days.  Not to mention, he was wearing a sweatshirt that didn’t quite cover his belly.  But that’s the disease.  We stopped for his coffee and as we continued to walk, I stopped to check the time and bumped into him, spilling his coffee over his hand and arm.  I felt so bad.  But he didn’t even flinch and didn’t mind at all.  The coffee was fresh from the pot 2 minutes ago.  I guess it’s really true that he just does not feel temperature the same anymore. 

When we finally got back to his room I told him I wanted to clean it up a bit while he went to lunch.  It’s always hard to get him to just leave as I’m still there.  I started stacking up magazines that he’d been hoarding so I could take them home and get rid of them.  The one I pulled out on top had Elle MacPherson on the cover.  He saw it and was like “WOAH!  Who is that????”  all googly-eyed like a 13 year old boy.  So that’s always fun to hear from your dad.  Again, distraction, it’s all you can do. 

 

Then I discovered a note pad on his desk with some things written on it.  I saw he had some tv shows with times and channels written on it.  Dr. Oz, The Big Bang Theory…and then my heart sunk.  At the bottom of the pad was the phone number of that “woman”.  The one who took advantage of him and got ahold of all his money…the one who had tried calling the facility a couple times to speak to him.  I have no idea where this number came from.  I tried to sneak through his phone real quick to check the call log, but didn’t have a lot of time at this point.  I didn’t want to keep him from lunch.  I didn’t want to come out and ask him and remind him of her.  So I tore the number off and took it with me.  I’m completely baffled because he doesn’t know his cell number, so she couldn’t have called him on it.  If she called at the front desk, we’re supposed to be notified.  And I don’t see him remembering her number long enough to go back to his room and write it down.  So we’ve got some investigating to do…