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…

 

Scheduled Neuropsych visit - 9/16/13

This was a crazy day.  My dad's business taxes were due for a business whose financial records were a mess.  I spent a lot of time trying to piece together what I could, trying to make sense of what little information he had by matching it up to his bank records.  I had to call in a favor to the woman from his bank who was in on this situation.  She would often call and warn us when X would come in with my dad to withdrawal money.  She was able to help piece together his check records and helped me discover that he continued to write himself paychecks every month.  Sometimes several times a month.  In his mind, that was how he got paid.  It didn't matter that he didn't have money in the bank to actually cash the check.  And did his business ever deposit the payroll taxes from these checks?  Of course not!  Which is where the countless tax notices from various organizations stemmed from.  Month after month after month...

 

So I needed to finish the tax return as best I could so my dad could sign it.  The other problem was my dad's doctor appointment was in the middle of the day.  He does much better with his morning appointments because he is always home when we come to get him (by surprise, never a warning so X doesn't find out about it and make him change his mind!).  From 11:00 on we never knew when we could catch him because he would start walking the neighborhood - his daily routine.  Sometimes X would pick him up (in his car she kept).  But we had no choice, we had to take the appointment we could get and hope we could get him there.  It was always very stressful, with a lot of worrying the night before about whether or not we would actually make it to the appointment with him.  This day, we decided to have my sister go get him early and bring him to my house so we would know where he would be.  We were worried about keeping him occupied for that many hours.  We figured he'd get antsy, would keep asking for beer, and just wouldn't be able to contain himself in my house.  But it was the best option we had. 

 

Well, this was our plan.  But here is an email from that day I wrote to my uncle that explains what actually happened...

 

Just wanted to let you know my dad's appointment did not happen today.  My sister took the day off work and picked him up this morning while I finished up his business taxes that were due today.  I also made an outline of what I wanted this therapist to know.  I decided to call the VA this morning to make sure we were going to the right location, which is when I found out the appointment had been cancelled, the doctor called in sick.  This was about 30 seconds before my sister pulled into my driveway with my dad.  Needless to say I'm beyond frustrated with this process and the pace things are moving.  So all we accomplished today was getting my dad out of the house (which seemed to be good to him), we got his taxes signed and filed, and I got a new mail forwarding address form from the post office signed by him so I can get his mail. 

We did discover some interesting pieces of information though.  He still has those "visitors" at his house.  They appear to be living there in his spare room. 2 young, young females, though we swear one looks like a young boy.  He insists they're two women.  "X set this" up he says.  He said that a couple weeks ago too - she set this up to happen once his utilities were back on.  So now we're thinking they are living there and paying rent to X!

He also said that cigarettes are so expensive and that for the last year or so X has been rolling cigarettes for him - or someone she knows has been doing it.  The last year is when his behavior has taken a turn for the worst, so I'd really love to see if these cigarettes are laced with anything.  He didn't have any left and had regular ones today, but we will keep an eye out for any chance to get ahold of one.

He still seems slow and spacey, and forgetful, and just backwards in public.  I really hope we can get a correct diagnosis soon.  I left a message to reschedule this appointment.  So far they said he's not available again until 10/23!!!, so I'm going to see what I can do to try to get him in sooner.  I'll keep you posted.

 

I can't even describe the planning and stress that goes into getting him to an appointment, and then the feeling of absolute disappointment when it doesn't work out.  The scheduling at the VA is completely absurd when it comes to emergency situations.  Six weeks is the standard wait for each and every appointment.  So we felt total defeat after this day.

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.