9/3/13 First appointment towards finding the diagnosis

I've been doing a bad job at going back in time and putting some of the back story on here.  There is so much to this.  Not just the present situation, but how we came to the diagnosis, and some of the horrible incidents that happened long before we knew he was sick.  It tore the family apart and took many years to figure out why.  I always used to pray that we would some day find out that he felt bad for all that he did, and how he treated the family.  I just wanted to know that he recognized it and felt remorse, even if he couldn't ever admit it to us.  Never did I expect it to be a disease like this.  I should be relieved that it wasn't his fault.  But it just makes me more sad that this disease had to come in and ruin half his life.  And he has no idea.  With it being Veteran's Day, it made me think a lot about him.  Growing up, I never used to give much thought about his service in Vietnam.  It was something he never talked about.  But the older I get and I am able to understand and appreciate what these veterans have done for us, I am truly proud of him.  I also can't help but wonder if this disease stemmed from him being in Vietnam.  How unfair for a person to be drafted, go to war, and then end up with this horrible life-altering disease because of it?  We will never know.  Unless of course another family member gets it and we discover it is genetic.  Either way, it's unbearable.

So getting back to his very first appointment leading to his diagnosis.  It was with a social worker from the VA on September 3, 2013.  My Uncle took him to the appointment with my one page summary of his symptoms - recent and past  - in hand.  Here is an email I sent my family about it after I had spoken to the social worker after his appointment:

Dad signed a consent form so that she could speak with family members for his health issues, so she was able to call me and talk.  I think this stands for all his future medical care.  She said he wasn't very forthcoming, which isn't surprising.  And not new to her either, dealing with all personality types there.  She picked up on his hygiene/appearance.  He told her he showers daily, and she tried to put it tactfully that she didn't think he showered today.  He told her he drinks 2-3 beers/day.  I told her that isn't true, and she knows she can't go off what a patient says, she said they lie all the time.  She said she gave him a memory test.  It doesn't hold a lot of weight in diagnostic testing, but he did poorly on it.  She said it's obvious (X - insert name of woman who took advantage of him) is involved big time and she feels she is exploiting him.  She said she called twice while he was in the appointment, and it was clear she didn't want him there.  (Strange how he answers mid-session).  I think his issue is he shuts down when he's asked questions like this, but since he wasn't able to go out and smoke or dive into a crossword puzzle, this was tough for him.  I think he shut down by not having a lot to say.  She said she's going to write it all up to his doctor and see if she can get him in sooner, and get him in for blood work also - that should be done through some sort of geriatric testing, but he needs the papers from his doctor.  I asked if she could have the dr. call me if we can schedule him sooner, because calling dad won't do any good.  Especially if X has anything to say about it.  The social worker wants to give Adult Protective Services a call.  She thinks its warranted in his case - even if I said no, she would probably be obligated to call based on what she found today.  It may speed things along, and at the least help us get guardianship over his finances sooner.  My other thought, is would he just sign that over to us right now?  Not really sure what he needs to sign, or how that is done.  I guess that would be another call to the attorney's office.

And here was my uncle's perspective after the appointment:

I took your dad to his VA appointment today - he was a little puzzled about the reason for the interview but co-operated when I explained we were going to initiate the process toward additional VA benefits. He indicated that X had already told him that she felt there were opportunities for further benefits.

We met with the social worker and I explained to her in detail the circumstances of your dad's financial and behavioral problems. I described his relationship with X and the apparent level of control she has over him.  I tried to make clear the extent to which we feel she has taken control of his life.   Your dad was surprisingly unresponsive during my presentation and offered very little comment. Ironically, during the interview, X called your dad's cell and her tone and demeanor toward him during the call (the phone volume was high enough for all to hear) spoke volumes to support our description of X and her influence over your dad. Incredibly, she even called back minutes later with a "furthermore".  The social worker was taking notes throughout -- the episode was not lost on her.

She got your dad to agree to respond to a lengthy series of oral questions - a psychological and cognitive assessment I imagine. -- he was a little irritated by some of the questions but completed the test anyway.

She feels it is necessary to accelerate the time until his next doctor visit. She said she will arrange this with the doctor and call us to advise the new date for the examination. Your dad was agreeable to this and said he would co-operate.

She also got him to sign a consent form which allows the VA to share his medical records and evaluations with you, your sister and myself.

So, that is how today went.

Let me know if any questions.

 

Looking back at this, I still can't believe how "easy" it was.  He cooperated for every appointment along the way, but we worried the whole time he would not.  He hated doctors and never went.  I think it was a fear thing.  It was so strange to us that he kept going.  We started out being kind of sneaky about it trying to almost trick him into going.  But we soon realized that wasn't necessary and he almost looked forward to getting out of the house and going.  It was such a blessing in the end.  The next appointment on the agenda was with the neuropsych on 9/16...

Happy Birthday Dad!

So we went to visit dad for his birthday over the weekend.  It's been awhile since we all were able to go on the same day, so it was nice he got to see us altogether and have plenty of people to shoot pool with.  We were armed with presents, a cake, snacks, and new shoes for him to try on. 

He's been complaining for months on and off about his feet hurting.  He had his feet measured back in May by a specialist who would get him specialized shoes.  But we're still waiting on the shoes to arrive, and no one seems to know what the hold up is.  So I ordered him a couple pairs of New Balance walking shoes.  No idea what size or style would work for him.  I was a little sad to order the "old man" Velcro style, but I wasn't sure how he would handle tying laces, or for how much longer he would be able to do it.

As soon as he saw us he was of course ready to go.  There was no talking him into trying on the shoes now, he was set on going to shoot pool and getting there as fast as he could.  He's always excited to see us, but something seems a little different lately.  Like he's a little down.  Maybe it's just a comment a nurse made to us a few weeks ago, but it bothers me and I find myself studying him to see if he really is ok.  The nurse said that ever since his friend Jerry died he's been extra quiet.  Doesn't say as much and seems more mellow.  I feel like I see that too.  The unit is filled with 90+ year old residents that are wheel-chair bound, or are always in bed and can't speak or move.  So why does the 67 year old have to be the one that dies?  The one that talked and joked with my dad, and was his daily smoking buddy?  So unfair.

We were going to order pizza for lunch and eat it in the Member's Lounge where he shoots pool.  But the last few times we've ordered food we got sandwiches from Jimmy John's, so I think that's what he's used to and that's what he wanted again.  So we ordered the food and waited for it while he shot pool with the guys.  The big present we got him was a new pool cue with it's own carrying case.  We wanted him to open it right away so he could use it to play.  He'd say, "oh ok," and then set it down and go back to playing.  It's so hard to get him out of his routine!  But we finally got him to sit down and open it.  As soon as he picked the box up he guessed what it was, even though it was in it's rectangular case.  He always was so good at guessing what we got before he opened it.  We couldn't fool him this time either.  We were afraid it wouldn't fit with his routine and he'd go back to using the old cue he started the game with, but he used it and seemed to like it.

After we ate and had cake, I had the kids give him the cards they made for him that morning.  Grant had asked what he should draw so I said "well what does Grandpa like to do?"  so he immediately knew to draw him shooting pool.  He was also very excited about the pool cue we got him and couldn't wait for him to open it.  For a 6 year old, it's amazing how interested he is in the game.  He loves watching them call the shots and seeing if they make it.  So the card was drawn in pencil, two people shooting pool - one of them Grandpa, the other was probably daddy.  Arm lengths were uneven, depending on the arm they were using to shoot with, and I'm not sure how clear it was what was actually going on in the card.  I was nervous when he handed it to Grandpa because I was afraid he'd either have zero reaction, or that he would make a comment about it that might hurt Grant's feelings.  But to my relief, he studied the outside, read the inside, said thank you and then as Grant walked away he gave me a giant grin like he was trying not to laugh.  So he did understand what the picture was and saw the humor in it, but luckily didn't laugh in front of Grant.

We stayed for a long visit this day.  Sometimes when he's out longer than a couple hours it's harder to get him back and he gets more antsy.  I think it's how he reacts when he's getting tired - more anxious and confused.  It was a reminder of why he is in the locked unit and why he couldn't handle being on his own.  He wouldn't know when to rest, and the more overtired he gets the more anxious he gets and then it's a vicious cycle.  Of course we wish things were different, but it does help with the guilt, knowing he is where he needs to be.

We took him back, making the usual detours to smoke out front and to check out the birds.  I was worried at this point he wouldn't be able to sit still and try on the shoes.  So I started hinting that we still needed to do that when we got back, so he would start getting used to the idea.  Once we got him back to his room he sat down and I got down on my knees and changed his shoes and poked around at the toes like he was one of my children.  Sometimes things like this really hit me, but I was trying not to think about it.  He said how tight they felt.  I can't tell if his feet are swelling, or if it's the slipper socks he was wearing (not sure whose those are, since we didn't bring them!).  But once he stood up to walk in them he was like "oh, these feel really good!" so I didn't know what to believe.  As he said this he took off the winter jacket lining he'd been wearing ALL DAY and I saw the sweat bleeding through his shirt.  Another reminder that he doesn't necessarily feel things the way others do.  We decided to come back the next week with a bigger size and try them on together before we decide which pair he should keep.

Before we left we hid his pool cue in his closet, and went through the stuff on his desk.  He had a big pile of unopened birthday cards.  One was from his sister and the others were from other residents.  So it must be something the volunteers work on with the residents.  That was really touching to see.  We're not sure why he didn't open them yet, but he said he would open them tomorrow on his actual birthday.  So hopefully he did.  Oh, and before we left, we hung up the sign we got him.  He walks past this sign every time we go to shoot pool and he has to stop and read it and laugh.  Every. Single. Time.  So we got him one...

Recent Happenings...

So last week I was served papers from the county court on behalf of my dad.  He's being sued for his credit card debt.  I really hoped we could ignore that part of his debt.  From what I've been told it's unsecured debt, so they can't go after your assets.  And as far as his credit, well it's shot anyway. So what difference does it make.  But now we've got to deal with the mess and the legal fees.  It's maddening because I'm not even sure it's his debt.  We believe the woman taking advantage of him had access to his credit cards, and maybe even had one of his extra cards on her to make purchases whenever she pleased.  I know for a fact when I went through a few of the statements, there were vacations charged that he never went on.  And if he is at fault, his brain could not comprehend what he was doing, and we caught on too late.  It's just not fair for him, or us, to have to go through this now.

I've also started looking into his family history a little bit recently.  My dad's side of the family is a big mystery - including their medical history.  I'm not sure what we will uncover, but I'm hoping to find no one else with the FTD gene, which will help me believe that maybe his case is sporadic.  But there's just a lot of weirdness on that side of the family, so it will be hard to overlook.  In the meantime, it is fascinating piecing things together and finding contacts that are right around the corner.

We went to see dad this weekend and he was very excited to see us.  We buzzed the door to be let in and he saw us, so he came by the window and started grinning.  Then he started giving a big floppy wave with a silly face to my kids.  It's so heart warming, because when he was healthy - or maybe when the disease first started but was in a different phase (it's hard to tell the difference), he never would have acknowledged them or been openly silly like that.

We ate McDonald's in the car on the way, so we brought him a milkshake.  A change in his routine.  He kept commenting how good it looked and how he couldn't wait to drink it.  But when we finally got him signed out and over to the area where he shoots pool, he was consumed in his routine.  Getting his coffee on the way, and then getting another cup as soon as he gets to the pool hall.  We kept reminding him his shake was going to melt.  It started to cross our minds that maybe he didn't know how to work the straw.  But he finally got to it, after several cups of coffee and his can of pop!

I tried to ask a little about his past and his dad's side of the family, to see if he remembers any Aunts or Uncles names.  You would think this would be silly, asking a dementia patient to remember the past.  But his memory is actually very good.  I'm often amazed by the stories he'll sometimes share about when he was a kid.  The long term memory seems unfazed.  So I tried to tread carefully when approaching the subject.  I don't know if he's blocked it out, or if it's so ingrained in him that he not talk about his dad because his mom wanted nothing to do with him after he left.  It sounds like he was a pretty horrible person.  So I hated to even bring it up.  But he said he doesn't remember anything or any names.  And that maybe if he thought about it some more he'd remember.  He also said his dad was pretty mysterious.  That's putting it lightly.  So I probably won't bring it up again.  I don't want to risk upsetting him.

I do like seeing him interact with his grand kids.  He's usually so antsy about his routine, I was amazed when he let my son clear the pool table all by himself by shooting the balls in in the most unconventional way.  He even found it humorous.  I also told him about a book my son was reading about a monster under the bed.  My son told me about a part where the monster comes out at night and lays down next to you on your pillow and practices opening his mouth wide enough to see if it would fit around your head.  So I shared this tidbit with him and he found it hilarious.  It's nice to see he still has a sense of humor.  He said that sounded like one of the books we read when we were little.  I'm thinking he meant the Sesame Street/Grover book about the monster at the end of the book.  It amazes me to hear comments like that because he seemed so...not present when we were growing up.  It's nice to see he remembers stuff like that.

On the way back to his room we stopped outside for another cigarette and took pictures by the peacocks, we visited the birds inside and then signed him back in.  On our way back to meet him in his room to say good bye, we overheard a nurse talking to another nurse about "Rich". I don't think she realized who we were.  She said "Rich came out of his room at 1:00 in the morning last night and said "Good Morning! to me...I told him Rich, it's still the middle of the night.  It's not time to get up yet.  So he said "Oh, well then Hello!"  I love capturing little moments like that.  Glad to see the humor is still there and that he gets along with the staff so well.  They really seem to adore him.

Ready to go

Dad is still by far one of the youngest, if not THE youngest in his unit at the VA.  And as we suspected, his roommate, the oldest resident, passed away a few days after our last visit. We wondered how this would affect dad and turns out, he seems relatively unfazed by the whole ordeal.  He said that some family had visited the roommate and when he died, an American flag was draped over him. We think dad probably sat there working on his crosswords the entire time.  We are a little bit relieved that he doesn't get shaken up by any of this. FTD makes sure of that, at least for now.

Just this past weekend, we paid another visit and dad casually told us that another resident died.  It was one of his smoking buddies who was bound to a wheelchair.  His name was Jerry.  Dad often liked to push Jerry around in the wheelchair as if he was "helping" and it seemed like Jerry didn't mind.  It was heartbreaking when dad would want to take Jerry with us to shoot pool or leave the unit and it's just not allowed. He'd always say, "C'mon, Jerry. Ready to go?" as he'd start to push the wheelchair. 

Well, Jerry was ready to go.  Sad because he was one of dad's buddies, and one of the "younger" ones at 67. We don't know why his care required him to be in lockdown and we may never know.  All dad knows is that "he's buried right outside in the cemetery."  And that was that. 

In some ways, FTD provides a sad blessing.  It's best we don't get to see dad mourn because the disease make him incapable of doing so.  But we end up doing a lot of the mourning for him. 

So long, Dorman.  And now, Jerry.

8/20/14 Visit - Veterans' picnic

Last week we visited dad on a Wednesday since the VA home was hosting one of their monthly picnics for the veterans.  Since dad doesn't usually expect us on a weekday, we didn't see him sitting in the lobby waiting for us.  Instead, we found him sitting at his desk, in his room, working on his puzzle books.  He had his back turned to us, intently working, that we had to greet him more than once before we could get his attention.  He was very happy to see us and quickly wanted to go shoot pool. 

Before we left his room, my sister and I noticed there was a nurse sitting at the bedside of his roommate. We didn't think too much of it at first, but then wondered if something might have been wrong.  When dad was moved to the dementia unit this past winter, while it was sad to learn that dad would be the youngest in the unit, it was a little amusing to find out that he was being paired up with the oldest resident.  I don't think they've ever spoken a word to one another. 

Once we left the unit, we decided to start by taking him to the picnic so that he could eat right away and we can spend the rest of our short visit shooting pool.  It's sometimes hard to flip the script on dad and introduce a new routine and if we start by shooting pool, he will lose sight of the other things planned for the day, and we definitely didn't want him missing a meal.  Unfortunately, due to the weather forecast, the picnic was moved indoors, but the food was still good and they had some entertainment. Dad seems to light up when he sees other veterans or staff that he recognizes from his unit, especially when they are all outside of "lockdown." It's like their world just got a little bit bigger, at least temporarily. 

Dad usually has a hard time sitting still, especially when we try to do something new.  He was anxious about getting food and then getting over to the member's lounge to shoot some pool.  But I went outside with him so he could have a cigarette while we waited for them to finish setting up for lunch and that seemed to help.  After that, he was really quite calm and didn't seem so antsy. He ate his lunch and commented about a lot of the songs the band was playing, even tapping his hand on the table to the beat. 

After lunch we made our way over to the member's lounge where our brother showed up to shoot pool with dad. Dad still likes to read the signs along the way and I always like to see if we can still make him laugh.  When he pointed out the sign in one of the kitchen areas that said, "Please do not store bait in the refrigerator." I asked him, "Where am I supposed to put all the worms that I brought with me?"  He laughed and said, "you didn't bring any worms, did you?" I wonder if he thought that just maybe, I had. But he's still pretty sharp with the banter and jokes, so that's good. 

After several games of pool with Ricky, dad actually remembered that we needed to leave by 2pm so that Denise could get home in time for the school bus drop off. At about 1:40 he suggested that we start heading back. It seemed like enough time, but we always forget that it takes longer than we think. He's got a routine for everything, and returning to the unit is no different. There's more signs, bathroom stops, one last smoke break and sometimes we look at the birds in the lobby before finally ringing the buzzer to let us back in. 

Then once we are in the unit, he takes his "shortcut" back to his room, which is not much shorter than the other way, but we always meet back at his room after signing him back in and returning his smokes.  When we returned to the room, it was quite obvious that his roommate was not well. We realized that he was probably moving on soon, as there was a different nurse at his bedside, making him comfortable and taking notes. I think they were watching him around the clock in what was probably his last hours.  We got it. Dad probably did not.  He went right to his desk to work on more puzzles and was blissfully oblivious that he might be getting a new roommate soon. 

Tomorrow we go back for dad's quarterly assessment report from the staff, so we shall see...

Judgment

So this disease has made me more aware of something.  Before, a person's appearance - someone lacking hygiene, an overgrown beard and ratty clothes, maybe a homeless person...I'd immediately start to judge.  Not voluntarily, but I'd be a little scared and not give their story much thought.  Seeing my dad go through this and being on the other side of it now has opened my eyes.

When I used to take him to run errands, I'd see the looks from other people.  Judging.  The hygiene that wasn't the greatest, the clothing choices that made no sense, the behaviors that were just odd.  I'd follow him through a store and have to monitor the food he'd pick up.  I'd follow him to the beer cooler and tell him he wasn't allowed to get any.  And have him politely respond "no? ok" and put it back.  It crushed me every time.  I'd follow him up to the gas station counter where he wasn't always so polite in requesting his cigarettes.  And then he'd stand there and have them wait while he opened the pack and gave them the garbage to throw out.  Even if someone was waiting in line behind him. Odd, and maybe a little off-putting for them.  But I knew it was just his routine.  He had to do it. 

Taking him to check on his PO box, where I knew he had not gotten mail in months, maybe years.  But he had to check it.  One day they wouldn't give him his key until he paid his bill.  I wanted to talk to the manager about paying the bill (and closing the account) and the attitude I got was definitely noticeable.  To them, he was a pain.  Came in all the time bugging them and he never paid his bills.  To them, I was associated with him.  And they really didn't want to give me the time of day either. 

When things hit rock bottom and my dad was arrested for trying to get cigarettes out of parked cars, we had to deal with the corrections officers at the jail.  We called every shift to make sure the new officers on duty knew the situation and understood he was sick.  Some of them didn't seem to get it and didn't really care to get it.  To them, he was a nuisance.  We went in one day to bring him some crossword puzzles and to see if we could see him.  They acted like it was such a hassle and in the end refused.  They did take the puzzles and said they'd give them to him.  Turns out, they did give them to him.  On the day he was released, as he was walking out the door.  To them he was just another criminal.  They had no idea what we were going through.  What he was living with.  Lucky them, they don't have to get it.

We've been having a rough time selling my dad's house.  Not an easy sell when there's a water problem in the basement on top of everything else.  I had a water proofer come out this week to give me an estimate.  I've never dealt with anyone in a service industry that was so rude in my life.  Appalling.  And I could sense the judgment he had of the place too...the odors in the air, stale cigarettes that we just can't get rid of.  If he only knew the half of the story behind that home, my dad, our family.  But he was as rude as can be, shooing the cobwebs and complaining that he should have me walk first in front of him so they hit my face instead of his.  Judging that we would not have the money for the repairs.  I was emotional about the situation as it was, having to deal with selling my dad's house when he has no idea.  No idea all his stuff is gone, his house is on the market and that we continue to drop the price month after month.  But people will continue to judge.  The appearance of the home and the man that used to live there.

I truly hope that this has taught me a serious lesson. A lesson I will pass onto my kids.  You never know a person's story, and you should never judge them on their appearance.

8/3/14 Visit

It was the first time that everyone was busy with things going on, so I went to see dad by myself. For many families, one-on-one is usually no big deal, but for us it's always been awkward.  What were we to talk about? I haven't had a real dialogue with dad in decades, maybe, ever.  So that was part one of my fear, but part two is and always will be what if something changes in his demeanor or behavior that I can't handle on my own?  We worry about changes in his brain that we know might be coming soon, but we just don't know when.  The day he takes a fall because his legs are too tired.  The day where something might set him off or he might be angry.  The day where he wants to leave the facility to go "home."

So far, so good.  He is still in good spirits and happy to see visitors.  Or in this case, visitor.  I think...

He gave his usual chuckle and smile when they let me into the dementia unit to see him.  I said, "it's just me today!" And, because FTD has stripped him of a filter, the first thing he said was, "I like it better when Brett, Mark, and Rick come so we can shoot pool."  I know not to take this personally and joked, "well one person visiting is better than no persons and I can shoot pool with you."  He agreed, and then said, "and I can get some cigarettes out of the deal." Sigh...he's happy to see me even if he doesn't always know how to express it. 

I wondered how the visit would go but it was the usual routine of taking the same route to the member's lounge to shoot some pool, pointing out things along the way, and talking about the day's agenda, which is usually the same thing each time.  Get some coffee, shoot pool, dad gets to smoke, and repeat until it's been a couple hours and it gets close to a meal time. Then we usually stop outside, out front of the building so he can have one more smoke. Sometimes we stop and look at the birds in the lobby before heading back to the unit. 

Since it was just the two of us, I played pool the entire time.  He still shoots well and I'm still pretty lousy, but I did make a few good shots.  Dad's pretty tuned into numbers all the time, so I think he really enjoys calling all the shots, not only for himself but anyone who plays with him.  "Eleven ball in the corner pocket?" Most of the time I don't know what I'm doing so I go along with his suggestions.  On some of the tricky shots, he'd tell me to bank it off the rail or off another ball, and to my surprise, I actually sank a few that way!  But most of the time, according to him, Denise and I "tend to rearrange the balls on the table more than anything else."  Guess we need to work on our game!  Although once in a while, he'd accidentally hit one of my balls in and I'd give an enthusiastic "THANKS!" and he'd laugh. 

At one point when we were heading back to the unit, we talked about upcoming visits. I told him there was a picnic coming up for the veterans on the 20th that we were hoping to take him to.  It would be a rare weekday visit, which will be nice.  At that point, he checked his phone to see what the current date was and said, "It's the 3rd. It was your mother's birthday yesterday." I was shocked.  Sometimes he loses track of dates - you just never know what you'll get with this disease. He doesn't say anything more about it and we move on.

As he was having his last cigarette outside, I told him I'd have to get going soon because I needed to run 13 miles when I got home. "Thirteen miles?!" I explained that I was training for my first marathon.  He asked, "how did you get started with all this marathon running? Was it Denise?"  In that brief moment, we had an actual conversation about something. It was nice, but it was fleeting, and he soon he was back to reminding me of the routine.

"So when we go back, you'll sign me back in...and turn in the cigarettes...and stop by my room with snacks...and I'll wash my hands and go eat supper?"  3x or so.

Oh, and we stopped to look at the birds, too. 

I have to say, visiting dad solo wasn't so bad.  We had some nice conversations.