Concerns addressed and dad had some new visitors...

So we’ve had some concerns accumulating about my dad that we wanted to address with the social worker.  We were curious if his showering schedule has increased, or if he was continuing to say he didn’t think he needed one when approached by the staff.  The last time we met we had heard this was the only area of difficulty with him.  We suggested that instead of offering it as a suggestion, to approach it more matter of factly to him.  Don’t treat it like it’s an option and we were sure he would comply. 

We’ve also been a little concerned that his OCD has settled him into his one favorite outfit which includes his winter coat, that he wears zipped up indoors while he waits (daily, we assume) for someone to come visit for the day.  Since we aren’t able to go more often than once a week, it is difficult to picture.  But he seems ok with it.  It’s just his routine.   But now that winter is over, we would really like him to dress weather-appropriate so he doesn’t overheat.  Last time my sister visited, he was very itchy and kept asking her to scratch his back.  This is when she noticed his favorite shirt was not only long sleeved, but fleece lined.

 Cereal bars and crossword puzzles are his favorite requests these days.  Problem is, an entire box of cereal bars will be gone two days later.  If he was given more than one box, those boxes will be gone too.   We found the staff was buying him boxes of these bars during the week, which we are so appreciative of.  But unfortunately he can’t pace himself, so we needed to see if they could spread out the amount they are giving him.

He’s also still complaining about phantom leg pains, that seem to come and go or change legs with each visit.  He never seems to bring it up to the doctor, so when questioned if anything is bothering him he just says no.  Again, so nice that he is agreeable and not a complainer at all.  But we want to make sure they aren’t overlooking anything.  Sometimes he acts like it is very painful.  We can’t help but worry about the later phases of this disease which brings immobility, and we worry if this could be an early sign of what’s to come.

 And the last concern are the cracks in his hands – big deep splits and grooves.  They look horrible and like it’s more than just the cold or smoking.  We thought they would have improved since he doesn’t spend nearly as much time outside in the elements as he used to since he’s been there.  I wince when I take out my purell to use for me and he wants to use it too.  I can only imagine how bad it must burn.  But he doesn’t seem to notice.  Again, we wonder which signals in his brain are functioning, and which might not be.  Maybe it’s not signaling the pain.

 After speaking with the social worker about all these things I felt much better again.  I can’t say enough good things about the staff.  They are always so polite and respectful, and my dad seems really happy with them too.  It’s nice that he knows them all by name and he seems to have a few favorites.  She said they try to be respectful with the vets, but if there are areas we want to push, they will be more than willing to do what we ask.  She said they will just make sure the same outfit he wants to wear won’t be available that day or that they have out something more weather appropriate for him.  She said the showering has still been an issue.  I suggested that if they bribed him with cigarettes, that should do it.  Of course that is not how they typically handle situations by bribing their patients, but if that is what we suggest and we are ok with it, she said they will try it.  It seems like the simplest and least confrontational way to me.  I think if it is just approached more often, it will become a part of his routine – which he is all about.  She mentioned that she will cut back on the cereal bars, since his family is bringing them weekly anyway.  And pretty much anytime he wants a snack, all he has to do is ask.  She checked out his hands and thought it might be the soap they are using, so they ordered some antibiotic cream for him.

I love hearing the little day to day stories when talking to her.  She said he often stops in her office to talk to her.  And he’ll of course ask what snacks she has that day.  So she’ll give him things like carrot sticks, or an orange – which I can’t imagine him actually eating!  But she said that he does.  She said to keep him busy she’ll sometimes give him little tasks to do, like to go and check out the Indians game on t.v. and report back to her on what is happening.  She said she sometimes forgets his illness, because he seems so normal and competent with his ability to do these things.  But like all of us, there are other things that bring us right back to reality.

We went for a visit this weekend, and I noticed that he was dressed in a different outfit and he wasn’t wearing his coat.  When we were signing him out he asked us if he should go get his coat.  It was actually a day he probably could have gotten away with it, but we said he’d be ok for the short walk outside without it and he was fine with it.  So it’s nice that they must have gotten through to him and he didn’t seem to mind.  I did feel slightly guilty like I told on him, or like I’m making things more difficult for him.  These are things in the grand scheme of things aren’t that big of a deal.  And I just want him to be happy.  But luckily he seems to be going with the flow as best he can.

 We brought the kids with us for the first time.  We thought it might be a little intimidating for them, but they did well.  He has never been very conversational with them, especially with the past phases of his illness.  But he did seem happy to see them and he commented that he was happy we brought them.  And he seemed concerned on whether or not they were having fun.  When the day was over he said it looks like they enjoyed themselves.  And he was right.  They had a blast.  They watched him play pool for a little bit, but then I had to move them to a smoke-free area after 45 minutes or so.  So they got a chance to play pool on their own, check out Pogo the parrot, eat some snacks, and play some games.  They were disappointed when it was time to leave, so I think it will be ok to bring them back with us soon.

 

 

Update and 4/12/14 visit

Within the first week of dad's house being on the market, we've learned there's already been some traffic.  According to the realtor, there's a couple who might be interested, depending on a few questions they have for the HOA.  But the wife "loves it!" 

When I read the emails from the realtor about this, my heart sank.  I really felt like crying at my desk at work.  This is the moment we've been pushing for all these months, with the last several weeks exhausting ourselves to get the house cleared out and cleaned enough to have it be somewhat decent. It's still hard.  It still feels like we are being sneaky.  But this is how it has to be, there are no other options and we pray that dad continues to like the VA home and never asks to go back "home".  Once in a while he'll mention something about leaving, and so far he hasn't been able to make the connection as to why he's there or for how long.  This happened at our last visit when he said something like "I'm not sure how long I'll be here," but then he's easily distracted by something else and it passes. Within a minute he's telling us how he's gotten used to the VA home and that he enjoys it. 

I went with my husband and brother this time, so a smaller group.  As soon as we got to his unit, he was there sitting in the lobby, as he always does, in his winter jacket zipped up.  Too bad that now the weather is getting much warmer out and he's stuck in this "routine."  He was carrying a bag as we were checking him out of the unit to go shoot some pool.  When I asked what was in the bag, he said it was from the previous visit (our aunt and uncle - his twin brother, and our cousins).  He said, "I thought we could work on these while we shoot pool." It was a bag filled with all sorts of goodies and I thought it was sweet that he thought to bring them to share. Almost like when you entertain people in your home, you want to have something nice to offer your guests. 

He asked about my sister and brother-in-law and I told them the kids had soccer today so maybe next time.  He said he wished they were there because he likes playing pool with Mark. And then he went on to mention how he likes to play pool with Brett and Rick, too.  It's almost like listening to a child come home from school, asking how their day was. "I played with Billy and Timmy and Charlie today." Once we got to the member's lounge area, it became apparent he had a new routine/obsession.  He kept asking us to scratch his back.  All of us, whenever someone wasn't at the pool table taking their turn.  I had noticed he was in the same shirt he's been wearing for at least a month now and then I realized it's lined! No wonder he's itchy? He's wearing a shirt that should be put away for the spring and summer months, but the problem is his routine won't let him break from it.  Just like the winter coat.  I'm noticing that he's getting more and more repetitive in his conversations, especially about the visit itinerary.  "So we'll go to the museum then?  After this game, we'll head to the museum?  So we'll get to the museum before they close at 4? So after we leave the museum, we can shoot pool some more?  You guys ready to go to the museum?"

We had a nice visit - as one can probably guess, we played pool and checked out the museum and then went back to shoot more pool.  Apparently, when his routine gets a little bit altered, depending on who visits, it sticks for the next visitors.  No problem at all for us, we're there to see him and do what he wants, but if he can tweak a routine, why can't he change his clothes? 

So I spoke with one of the nurses that day about the itching and the clothing and he kind of laughed and said if he could just get him to shower more often.  I explained that he's in clothing that's way too warm and on the next visit my sister and I will be swapping out his wardrobe with spring and summer clothing.  We think that his winter jacket has a lining that can be removed, so if he's still set on wearing it, at least it will be lightweight.  This whole disease is very upsetting but there are certain things that are so unnecessarily frustrating.  We plan to talk to the social worker about their approach for getting him to shower.  It's not about asking him to, it's about telling him that it's his turn on the schedule. Even if they have to bribe him with cigarettes after.  This can't be the first time they've dealt with this sort of thing and they're lucky he's mobile.  Compared to most of the other residents, showering should be a breeze!

Hopefully, things will get better before they get worse.  We want dad to be comfortable and while being in a routine is comforting to him, he needs to be safe...and in short sleeves!

But we're the kids...

Dad's house is officially on the market now and we're struggling with it almost as much as when we determined that he needed to be placed in a nursing home.  These are huge decisions that many of us need to face at one time or another, but when it's at least a decade earlier than ever imagined, it makes it even more difficult.

We're supposed to be the kids here.  Our brother's not quite 30-years old.  I don't think something like this was even on his radar. My sister and I say all the time that we don't feel like the adults, yet we've been having to make so many decisions on dad's behalf. We always went to him for the advice. Dad always knew what to do - especially financially.  Now he can't balance a checkbook nor do we let him have one anymore. 

Over the last several months we've seen just how devastating this disease is.  Watching someone unravel and deteriorate before our eyes has been difficult to say the least. Cleaning up after the mess has been even more so.  We're not talking just elbow grease here, which there's been plenty of, but all the creditors, taxes, HOA fees, even gas stations and grocery stores have him listed as owing money to them.

So this house has to sell.  We need every penny and then some. Every time we let ourselves get upset that it's come to this, we tell ourselves this is how it has to be.  Dad is safe, fed, has round-the-clock care and activities, while still keeping a very familiar routine that he had in his own home.  We are so fortunate and proud that he's a veteran and in good hands at the VA Home. They treat him with respect, unlike some of the questionable characters he hung out with at his home.  There's finally some relief and reassurance for the family.

It's ok now, Dad. We've got this.

August 18, 2013. The Next Day...

So the day after I found my dad in the middle of a giant mess with no utilities, I called in the family to help.  My uncle, one of my dad’s brothers, met my sister and I at my dad’s house the next morning.  At this point none of us knew what was wrong with him.  We didn’t know if we’d be welcome inside.  We didn’t know what he was capable of based on his past mood swings.  Would he actually open up and tell us what was going on?  Would he shut us out and get angry?

My uncle went in alone first.  He offered my dad some help getting the utilities turned back on.  And suggested he take him to the doctor – the VA, to see what kind of benefits he could be eligible for that would help him pay his bills.  My dad seemed agreeable to all of this.  A good sign.  Little did we know he would be agreeable to everything along the way.  But at this point we felt we were treading on thin ice.  We wanted him to let us help, but were worried he would get mad or embarrassed and not let us if we pushed too far.  My uncle soon noticed that anytime he would start to question my dad’s situation, he would shut down and start working on a crossword puzzle.  He’d start asking questions about what the answer to 2 down or 4 across were.  The severity of the situation wasn’t sinking in, and we weren’t going to get many answers.

My uncle came out and my sister and I went in with our cleaning supplies a few minutes later.  We pretended we didn’t know my uncle had been there, and we were just there to help clean up the mess that I had found the day before.  Sure enough my dad said that would be ok.  He was still wearing the same clothes as the day before (probably the same as the day before that and the day before that and the day before that, and so on).  He needed a shower bad.  But one step at a time…He just seemed so passive.  And nice.  It was so weird and sad. 

The smells were horrible due to the rotting food in the fridge (remember, no utilities!) and rotting garbage all around us.  We opened windows and tried to pretend it was natural and we weren’t trying to hold our breath or cover our faces in our shirts.  My sister wasn’t feeling well this day which made it extra tricky.  She had a rough time in that fridge throwing out the rotten food, trying to tough it out and power through.  It was so horrific we were almost laughing, and having to hide our faces some more.  It was so wrong, but sometimes when things are so bad, all you can do is laugh. 

As my sister cleaned out the rotting food (she may have gotten the short end of the stick here), I started tentatively bagging up his mail and random notes and papers that were lying around everywhere and sneaking it to my car.  He sat at his dining room table and worked on crossword puzzles, oblivious to what we were doing.   The more I realized he wasn’t going to get upset, the more furiously I bagged things and carted it outside.  I started piling up the garbage and mail lying all around the table he was working on, and shoving it into boxes and bags.  He didn’t seem to care at all or ask what I was doing with his stuff.  So we kept going, until all of it was bagged up and taken to my car.  Sometimes we would stop and read some of the stuff.  It was a little frightening how bizarre some of it was.  Strange reminder notes, random trivia, series of numbers covering an entire page, but we had to keep bagging and moving along.  We got the garbage thrown out, the fridge cleaned out, and my uncle was working to get the utilities back on the next day.  It was a good start.  But there was so much more to do.  And now so many bags of mail to sort through, with the hope that it would provide some clues as to what was going on.  We had no idea what we would uncover or  what diagnosis was in store for us.

 

Here was what you saw when you took one step through the door...

 

the piles continued into the bedroom...

and into the office...

 

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.