Visit 3/22/14

We had plans for more of us to visit on this day, but plans started to fall through last minute.  So in the end it was just my sister and I who were able to go.  We know how he looks forward to these visits, and it’s the only way he gets out of his wing, so even if things are crazy at home I know we have to do everything we can to get there for him.  Even if we have to split up and just have one or two of us go.

Every visit starts the same.  We get buzzed in, and we find him sitting in the lobby area by the windows, waiting with his jacket on.  When he sees us, he lights up like he’s the next contestant being called on a game show.  It’s so sweet and sad all at the same time.  I wish he would have acted that happy to see us when he wasn’t sick.  But we will take what we can get right now.  He tells us how he has been looking out the window all morning ,watching for our car.  Even though we told him we wouldn’t be there until the afternoon.  And even though the parking lot is not in view from his window.  He even walked us to another window that he goes to look out to get a better view.  Again, so sad and sweet.

He’s always so anxious to get out and shoot pool, but this time as we were getting ready to walk out he grabbed on to the handles of another patients wheelchair, started to push it and said “are you ready to go Jerry?”  And the guy was like “ok!”  I think the guy was excited to get a chance to get out.  We felt bad saying we didn’t think that was allowed, but we’d check with the nurse.  Sure enough they said he was only allowed to go with staff, unless his family said otherwise.  So we had to leave Jerry there. 

Shooting pool is usually reserved for the guys, but this day my sister and I had to step up and play.  We were pretty bad, but he didn’t seem to mind.  Another one of those moments we wished we could have enjoyed in the past.  But again, we have to appreciate this time we have now.

We have secretly been cleaning out his house and getting it ready to sell.  For some nagging reason, I feel like we need to get his permission or approval before proceeding with selling.  Even though I know he can never go back there.  I guess it’s that I still feel like the kid, and this shouldn’t be my decision to make.  I bit the bullet and decided to bring it up, praying he would give his usual “ok, that sounds good” response.  But he was more resistant than I expected.  He said he didn’t really want to sell.  (I don’t blame him, especially when he doesn’t think anything is even wrong with him).  But after a little more discussion and pointing out the reasons why he might not have a choice, he seemed to come around and say ok.  But it wasn’t as easy as I hoped for, and I’m still afraid he’ll change his mind or start talking about wanting to leave and go back there.  For now, I will just have to take that as my permission to move forward.  I don’t plan to bring it up again, and I hope he doesn’t either.

This visit he did appear more tired than in the past.  His eyes seemed red too.  I asked if he was feeling ok and he said he was just really tired, and that sometimes he has days like that.  My sister and I looked at each other, silently wondering if it’s the disease progressing, but hoping that maybe he just didn’t sleep well.  We left feeling drained, as we always do when we end a visit.

Little white lies

It's so hard to know what dad's thinking or how he feels about anything because the FTD seems to really dull the emotions.  So when we need to inform him of something, we get so nervous about how he might react.  It's been this way since we started tiptoeing around the idea of putting him in the VA home, all the doctor appointments he had to endure, and every decision we needed to make for him by first having him sign on the dotted line.  It always felt so awkward for us, wondering if he might snap and resist us. 

So far it hasn't been an issue at all.  He seems fine every step of the way, which has really been a blessing in disguise for us.  But for some reason, it still doesn't make it any easier.  Just this past weekend we had to tell him we wouldn't be able to make it out to see him. 

No one wants to be the bearer of this news because he seems to look forward to our visits.  We talk about it for days and then finally someone has to just do it.  I started initiating some calls to him but he's gotten into a habit of either not charging his cell, or not answering it.  I gave it a few tries, while taking a deep breath in anticipation of disappointing him.  When he still didn't answer, I had to try the nurses' station next.  They were very nice and went to go get dad to put him on the phone.  He sounded pretty good and upbeat and always starts the conversation with, "Hi. So what's going on?" I told him we weren't able to come by and started rambling little excuses and little white lies.  "Well, it's tax season and I think Denise has to work today..."  She wasn't working, but usually does, and it really was tax season, so a half-truth.  "...and Ricky has a car appointment, I think." He did, although it probably wasn't going to happen until the next weekend. Oops!  "...and Brett's on-call this weekend, so he can't travel that far in case he gets paged." Turns out he did get paged all weekend, so he took one for the team with my little white lies. Suprisingly, or maybe not so surprisingly, he was fine with it.  I told him next weekend for sure and he of course closed with, "make sure you bring me a pack of cigarettes when you come."  Easy peasy.

I just didn't have it in me to tell him the real reason we were hanging back. We had planned to make another go at cleaning out his house instead, but we still can't quite muster up the courage to tell him this. But it's quite evident it was good reason to skip a visit this one time.

This isn't even everything. I think this was the second time we've filled the garage with trash and junk.  It's amazing how much stuff one person can collect in less than a decade, but it was quite clear he didn't know how to part with things or even throw out the trash sometimes.

And here it is on his treelawn a few days later...

 

It didn't all fit in the frame of one photo...

This is all from inside the house.  We haven't really begun to tackle the garage and we still have a little more in the basement to go through. It's absolutely exhausting and sad to see this happen to a loved one.  And even more sad that they don't recognize it as being a problem. 

This weekend, we definitely are visiting dad.  As difficult as it is seeing him in the nursing home, it's far better than seeing him here...living like this. 

Impaired Judgment

One of the characteristics of FTD is it impairs your judgment.  That doesn’t sound so bad when you consider other diseases and their physical symptoms, right?  That is, until you see firsthand the level that judgment is actually impaired.  Here are some examples…

Dad either gave away, allowed others to take advantage of, or spent himself - hundreds of thousands of dollars in about 5 years’ time.  His investment accounts, his retirement, his life insurance policies…all gone.  On top of this, he racked up thousands and thousands of dollars in credit card debt.  Pre-FTD: This is a man who was brilliant when it came to running his business, managing his finances and investing.  He worked with a financial planner, but often went against his advice, usually benefiting from his own decisions.  This is also a man who obsessed about having enough money to retire and analyzed his accounts daily.

When I started going through the piles of mail and bills, I found all the junk mail he received.  I discovered that he signed up for every club out there - movie club, book club, dvd club, magazine subscription, you name it.  And they were for things he wouldn't even be interested in.  Disney movie clubs, Harlequin romance novel book clubs...the more he signed up for, the more junk mail he received (and of course signed up for). Crazy psychic organizations asking for donations, letters that said to mail in $200 to claim your million dollar prize, money sent in to have some little crappy trinket gift sent to you... every piece of mail that came asking for money, he sent in with a check.  

Dad’s hygiene and the cleanliness of his house took a turn for the worst this past year.  A hoarding nightmare...piles of mail and unpaid bills on every single surface of every single room.  Years’ worth, covered in dust.  He would note on the envelope what was inside, the amount of the bill and when it was due.  But that was the extent of it.  He gave up trying to pay them.  And I don’t think it was because he didn’t have the money anymore.  I think he just didn’t know what to do with them.  The piles of garbage, empty containers, rotten food, piles of dishes that needed to be chiseled off with a blowtorch to clean them…I’ve never seen anything like it.  Pre-FTD:  Well, I’ve already described his financial and business sense.  And as for the cleanliness & hygiene, no one in their right mind would find the state of his house or his personal hygiene acceptable.

Once we started taking dad to doctors to try to get a diagnosis, we were nervous about how he would react to going to see a doctor.  We ended up going to social workers, psychologists, neuro-psychiatrists, general practitioners, having cognitive tests, blood work drawn, MRI’s, and the list goes on.  The cognitive tests alone took 6 hours.  Never once did he question why he was there and what they were doing.  When we would sit face to face with the doctor and explain in front of my dad what was going on, how he was being taken advantage of, how filthy his home was, and how bizarre his behavior was, never once did he speak up or get upset.  And after we’d leave the office, he’d say things like “well, I think that went well.”  All I can say for pre-FTD is that my dad would never go to the doctor for any reason.  Never.  Not to mention, I'd be terrified of his reaction if we had said the things we did in front of him like that.

This past fall one of his “friends” set up an arrangement to have one of her daughter’s friends move into his spare bedroom.  Rent-free, to help her get on her feet.  She was maybe 20 years old, tops.  And a drug addict.  She often had her girlfriend stay there too.  Not only did they not pay to stay there, we found checks that my dad wrote to them.  The place never got any cleaner either.  They took the mattress off his bed and used it as their own in their room.  He didn’t appear to think that there was anything unusually bizarre or completely absurd about this situation, as he would have pre-FTD. 

As the weather got colder this winter we were getting more calls from neighbors and the police that my dad was found roaming the streets around his neighborhood looking for cigarettes, and not dressed for the weather.  One night I got a call from a neighbor saying that another neighbor found him outside on the corner waiting for hours in the dark in subzero temps.  He was dressed in only a hoodie and sweatpants.  No hat, no gloves.  When I asked him what he was doing outside he said that he asked some guy for a cigarette and the guy told him he didn’t have any, but would be right back.  Who knows how long he would have waited had that neighbor not seen him.

His obsessions continued and he started searching parked cars looking for spare change and cigarettes.  This is what got him arrested eventually.  He stayed in jail for 5 days and when he was released his response was “it wasn’t so bad, really.  I got to watch TV and have hot meals.  It wasn’t bad at all.” 

One day we were at his house checking on him and he pointed to the contents on his counter as if he had great news for us…“hey, look at this” he said…”one day when I was out walking, I got real lucky and found this butt of a cigar and this $1 bill.  I took them home and put them in the oven to dry them out.  It worked ok, but the cigar wouldn’t light so well after.”  We tried to hide our horrified expressions and just smiled and nodded like this was your regular everyday good news.

This is just the tip of the iceberg, but enough said.  I sometimes feel a physical illness would be easier to handle.  It is just so hard seeing him like this.  This is not him.  Not even close.  It’s heartbreaking when I think about what his old self would do if he saw the way that he is now.

How's your mom?

Whenever we explain what happened with dad or about his recent diagnosis, the first thing most people ask is how our mom is doing or how she's handling this.  I know what they are getting at.  She had a very difficult time making the decision to ask for a divorce.  She did not take it lightly.  She didn't know he was sick and neither did we. He just kept progressing more and more into an asshole who didn't want help.  Nothing was wrong with him, it was everyone else who had the problem. Believe me, she tried.  We tried.  We had a family intervention with him that ended in my grandparents being banned from coming back to the house. My mom could no longer host her parents for dinner. It was sick.

When people ask about mom, they weren't there to witness the intervention. They weren't there to hear the screaming and yelling day in and day out.  Not your typical spat or argument, we're talking hours of wanting to prove a point, have her read an article that he underlined important points in red ink, or spouting off about politics or someone who wronged him. Hours.

When people ask about mom, they weren't there to watch dad fling meatloaf up the stairs.  They weren't there to wonder why he'd use every single dish, bowl, and cup in the house, leaving them all over the floor in the family room, just waiting for someone to point it out so he could blow.

When people ask about mom, they weren't there to fear for her safety.  They didn't witness the threats of being locked out of her own house or being told to not come back after she went to check on her parents - her ailing father. 

And they weren't there when she found the diary my dad was keeping, writing about his sexual escapades with prostitutes that he brought home while my mom was at work.  I don't know how you recover from something like this.

There are so many moments we could write a book, and maybe we will. In the not-so-distant future, we may share more of the horrible things that happened. Mom kept a journal and if she's ok with us sharing some of it, we hope that it sheds light on what a horrible disease frontotemporal dementia is.

For the person who finds this blog out of absolute desperation, thinking they are alone fighting this horrific battle - you are not alone.  Your loved ones are not themselves - they are sick.

This disease needs more awareness...quick.

Say Something...

This song is on all the time and it kills me every time I hear it.  It’s a sad song as it is, but since we’ve spent more time in the past few months with dad, driving him around for errands, this song has been on the radio several times while he was in the car with us.  Every time he points it out, asks who the woman in it singing is, and seems generally interested in the song.  We talk about how sad it is and how it’s hard to listen to and he agrees.  It’s odd to have any sort of conversation with my dad about “feelings”.  We just never were the type to open up – especially him, and we sort of took after him.  So now I let my mind wander about why he is interested in this song and I really find it heartbreaking.  Even though FTD is supposed to strip you of your feelings and emotions early on, and this should have been done long ago in my dad’s case, I feel like sometimes now he is more heartfelt and personable than he ever was before.  We have found the letters my mom wrote him years ago, pleading with him to get help for his anger, for his animosity towards her and her family…which he never did.  But he seems to still read all the notes she wrote to him because they were kept close – with all his crossword puzzle books he did on a daily basis.  I wonder how much that gets to him and how many regrets he has.  Whenever I hear this song now I think about all the what-if’s.  What it must represent for him and the wife he pushed away, their relationship beyond repair.  What it means to us as his children, how all we wanted was to be noticed and to feel like he was proud of us – which we never got.  And to himself – almost as if it’s a cry for help we didn’t hear until now….14 years after his symptoms started.

August 17, 2013. The day we realized something was seriously wrong...

After nearly a year of not having contact with dad...holidays came and went, phone calls and messages went unanswered, I decided enough is enough. Whether he wants contact with us or not, I'm going to check in on him.  After an 18 mile marathon training run near his house, I decided to go to his house.  I found him unshowered for days, maybe weeks.  Filthy, smelly clothes, acting kind of weird and foggy, doing a crossword puzzle at his table. The place looked like a hoarders nightmare.  Piles of papers and mail, newspapers and magazines, piled everywhere. Years worth, covered in inches of dust.  And there was no electricity.  Food was rotting in the fridge.  The smells made me gag, but I had to pretend like it was normal so I wouldn't offend him.  His behavior was so off.  He said things like "the fridge hasn't been working so good."  When he saw the fuzzy green mold growing on the Stouffers boxes in the freezer he asked what it was.  I was fading fast after my run and couldn't stay and breathe in anymore, but I offered to take him shopping.  I took him to Kmart and gave him $100 cash.  I waited in the car because I was dripping in sweat, and now freezing.  I walked to Burger King twice to go to the bathroom while I waited for him, picturing him all OCD up and down every aisle.  After an hour, he comes out and lights up a cigarette in front of the store, with no cart and no groceries!  So he wanders over when he's done and says he didn't have enough money, does he have his checkbook in the car?   So I said I'd go in and take care of it.  I find the cashier was actually waiting for him, thinking he'd be right back!  The line was getting longer, people were standing there impatiently, and they were starting to unbag his groceries.  Instead of hurrying to get more money, he stands outside and smokes a cigarette while they were waiting!  I was so embarrassed, running in with my credit card.  I was covered in dried sweat and I know I looked and smelled like death.  Then my dad came back in behind me who smelled worse than me, so it was like Stink 1 and Stink 2.  He spent $180 on CRAP - tons of junk food, boxes of Hershey gift box candy, magazines, cross word puzzles, and of course beer....it was so eye opening and bizarre.  I brought him home, helped him unload his groceries, and left to come up with a plan of attack for him.  Where would we begin?