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.

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.

7/27/14 Visit

It started off like any other visit.  Whoever is available to visit dad will carpool or meet at the VA and enter the main entrance where we sign in and fill out nametags for ourselves. As we walked down the ramp to the reception area, we realized we were walking in on a situation. It took a brief moment to realize it was a deceased body on a gurney, surrounded by what seemed to be family members. They were all quiet while a staffer folded up an American flag and presented it to them. I suppose this sort of thing happens all the time, but it was the first time we witnessed it.  I heard my niece quietly ask, "did that person die?" and it all felt so real.  This is probably the last place most of these veterans will ever know. This could be us one day. It was comforting that this veteran obviously had family when I'll bet not everyone there does. I was glad we were all there for dad.

After we checked in, dad was in his usual chair in his unit waiting area, jacket on, ready to go.  I wonder if he wears that jacket every single day. I wonder if he sits there waiting for us every day as well.  He still seems to have a good understanding of weekdays vs weekends, so that's a small comfort. He greeted us with his usual laugh and smile and instantly asked about the usual routine of if we brought him some cigarettes and that he's just dying to play some pool.

Some days he's really good, this particular day as well.  It's hard because I'll sometimes wonder why he's there and then he'll get into one of his OCD modes and it soon becomes apparent we made the right decision.  It's just a shame he can't get out more but it makes our visits that much more special.  He didn't stop and point out as much this time and it's almost funny because we come to expect the same comments each time - stopping to look at photos of the newest residents on the wall, stopping to look at the recently deceased list of residents, complete with his commentary of "I hope I never see myself on there, but then again, I won't be around to see it.", etc.  He'll point out some of the posters and art and funny signs too about "hot beer, lousy service" that he gets a kick out of, and when this doesn't happen, we almost miss it!  I've even pointed things out to him because I was expecting his commentary.  I guess this shows we will never tire of this and will cherish the repetition and his tour guide ways for as long as possible. 

Dad still shoots pool very well and jokes about the butt-kicking he'll be unleashing on any of us who try to play.  He played several games with my brother-in-law, while my sister and I played with the kids. Then I noticed something that took me back in time.  Before the diagnosis, dad went through a phase where he hardly noticed or acknowledged the kids.  He seems a little better now but when I watched him walk past my nephew and pat him on the head, it reminded me of dad from a long time ago - his way of letting you know he sees you.  It was cute and made him seem normal again. 

But it doesn't take long to realize he's there for good reason and no matter how busy we all are, it always ends up being a nice visit and good time.  It gets dad out and moving around and helps him interact more.  There are a couple weekday visits coming up soon.  First, there is a picnic for the veterans that we just missed out on in July, so we are going to take him to the August one.  And the following week is his next quarterly assessment.  Last quarter we got a pretty good report on him, so we're hoping for the same this time.  We will hang on to these while we can. 

A reminder of the past

This week we took the kids to play miniature golf for the first time.  We took them to a course that we went to with my family all the time when I was a kid.  It was eery how nothing had really changed.  I remember the same windmills and same humpty dumpty head from when I was a kid.  It was kind of bittersweet playing with my kids and watching their excitement, but then remembering how we used to do things like this as a family when my dad was still a normal dad.

But then I have another memory of the place.  My dad used to love golf, and we'd sometimes go with him to watch him hit balls on the driving range at this same course.  I still remember the sound of his metal golf cleats when he would walk across the pavement to the driving range. I also remember a time when he had a raging adult tantrum and how embarrassing it was.  The grass was wet and he wanted to hit the golf balls a couple feet ahead of where you were supposed to.  I guess it was a dryer spot.  He was told for his own safety, and for the safety of the other players, he could not do that.  That's when the screaming meltdown started, between him and the manager.  Only the manager remained calm.  I remember everyone staring.  I remember thinking my dad had a good point, but this sure was embarrassing and why couldn't he just calm down?  I remember the anxiety it brought on just like it was yesterday. 

I was 10 or 11, which means he was about 39.  I will never stop wondering, thinking back about other times similar to this, was this the start of the disease?  Was it part of the personality changes, the irrational anger the disease brings on during the early stages, when the frontal lobe of the brain is just beginning to deteriorate?  Did he have this in his 30's and 40's?  And if he has the genetic mutation that caused this disease, am I doomed to get this in a matter of 5 years?  It's something I try to ignore, but the thought...the fear...is always there.  Always.

Father's Day visit

It was our first Father's Day visiting Dad in the VA home, and in some ways, it was probably the easiest planning we've had in the last several years.  It used to be difficult deciding if we should host him or take him out somewhere when he'd seem to be antsy and uncomfortable doing either.  But that was before we knew his diagnosis. 

We all went out to see him, with the plan of having a picnic lunch brought in so we could try and eat outside.  He's very much into a routine when we visit, so it would be interesting to see if he'd let us change things up on him.  As it was getting pretty close to noon and we didn't want the staff to have Dad already seated for lunch, I decided to give them a quick call to let them know we were close by and should be there in just a few minutes.  We're not sure if he really knew if it was Father's Day or not, but the nurse said that he will be so thrilled and that he'd been checking the calendar and the pacing the lobby waiting for us. When we got to his unit to be buzzed in, there was another lady waiting outside as well.  She was there to visit her dad and we got to talking with her.  Sure enough, there was Dad on the other side of the glass, and since he can't let us in without the aid of a staff member, he cupped his hands to his mouth to shout through the window that he'll go get someone to let us in. It's so bittersweet.

The lady waiting with us asked if that guy worked there.  We said, "no, that's our dad." She was shocked and couldn't believe how young he was.  He gets that a lot.  People often think he's a staff member and not a resident, especially in the lock-down wing where he's easily 20 years younger than most. 

We signed Dad out to go shoot pool with him, which is a big part of his routine with us.  He always gives a little smile and a laugh when he sees us, and that's something we cherish while we still can. You just never know how long that will last with FTD.  Once we leave the wing, it's the usual routine of pointing out artwork and photos on the walls as we walk.  He'll tell us step-by-step how we will get to the member's lounge to shoot pool, even though we can all probably get there with our eyes closed now. We let him talk and do his thing.  He always thanks us for bringing him things to eat and drink and really enjoys getting to shoot pool. 

While the guys played pool, I enjoyed the outdoors with my sister and niece and nephew and we called for lunch to be delivered.  We were afraid that Dad would be stuck in his routine and want to get lunch at the dining hall, but it only took a little bit of coaxing to have him sit outside on a beautiful day with us. After we ate, he seemed anxious to check out the museum - another usual stop on his itinerary when we visit. But we wanted to give him our gifts first. 

We pulled together a nice gift to compliment his crossword puzzle hobby - a magnifying light, a desk light to work from, some more puzzle books, and his favorite cereal bars that he likes to snack on.  We also decided to make him a new Army scrapbook.  He had a book that my mom made years ago with all the photos and memorabilia that he'd send home from Vietnam. Over the years, the book started falling apart and many of the photos came loose, so we thought this would be a fitting gift, especially now that he's in the VA home, where there really is a sense of pride and respect for those who served for our country. 

I think it came out pretty nice. 

 

 

 

 



We never know what he's thinking or if we'll trigger certain thoughts that might be difficult for him.  When we gave him his gifts, he went through them all pretty quickly but he did seem to like the book and took the time to go through it.  It's amazing how his short-term memory can be so off while his long-term is completely intact.  He pointed to some of the guys, remembering their names like it was just yesterday.  Overall, we didn't get a huge reaction out of him, but we weren't expecting that, either, because with FTD, emotions are usually pretty flat. I hope he continues to look through this book and shows other family when they visit. 

 

One small step at a time...

After discovering the state my dad and his house were in that first weekend, we needed a plan of attack.  Here is the first of many lists I started:

1)      Get electricity back on

2)      Go through bags of mail and business papers and random notes to get a sense of what might be going on and where everything stands financially

3)      Set up new bank account and try to limit access to it

4)      Set up medical appointments through the VA

5)      Schedule appointment with eldercare attorney

My uncle graciously said he would take care of no. 1 first thing Monday morning.  He also said once we had a doctor’s appointment set up, he would be happy to take him to the appointment.

So I started with 2.  I wish I had taken a picture of all the bags to show how bad it was.  But here's a sampling...

 



 

Yes, I even used empty beer cases to tote the papers home...

 

 

 It took about a week to sort through everything in piles from medical, personal finance, business, weird notes, bills (paid and unpaid), and random clubs and subscriptions he signed up for.  As I read through the notes and things he documented, it became clear real fast that there was a woman involved who was taking advantage of him and his situation.  We’ve met her before and had always been suspicious of her.  Now we were seeing firsthand the checks she wrote to herself.  Sometimes he signed them, sometimes she signed them.  The debt uncovered was mind boggling.    After the damage was assessed, I was able to gather what was needed to meet with the eldercare attorney we had recommended to us.  Little did I know what a painstaking process that would become. 

 

Here's the after...

The next step was to get him in for a diagnosis.  I honestly just thought it was depression, maybe mixed with alcohol.  I just figured he didn’t care anymore, and maybe he snapped somewhere along the way and had some sort of mental break.  I also believed the doctors would never be able to figure it out.  Especially at the VA, which was the only place he could afford to go.  I expected to get a clean bill of health that would leave us scratching our heads.  I honestly didn’t know where to begin.   I started with his primary care physician who speedily squeezed us in for 10/23…when I had called on 8/29.  Sorry, not good enough.  I called a VA social worker and left a 5 minute message on her voicemail, trying to explain a lifetime into a single message.  She called me back and got us in 9/3 to meet with her.  I also left a similar bumbling message for one of the neuropsychologists and scored an appointment for 9/16.  My uncle planned to take my dad to the 9/3 visit with the social worker.  I had no idea how to explain the behavior we were seeing.  How to portray the severity of the difference between the way my dad is now compared to how he used to be.  At an appointment that took place in front of my dad.  So I wrote up a 1 page summary for my uncle to take with him and hoped that maybe he could show the therapist in private.  Now we just had to figure out how we were going to get my dad to agree to go, and not let the woman taking advantage of him find out about it, so she couldn’t talk him out of it.

Update on our concerns after 5/21 visit...

After our last visit and discussion with the nurse on dad’s changing behaviors, I wanted to address our concerns with the social worker.  I sent her an email explaining what we had heard and how we were upset that maybe this was a sign that things were changing.  He had been so friendly and agreeable since we discovered him in this state last summer, and we wanted to hang on to this phase as long as possible.  I had also heard earlier that week that they upped his Vitamin D after he tested low, so I wondered if that could have any impact on his behavior.

She explained that after talking to the staff, they had noticed some increased agitation gradually over the past several weeks.  And that it was worse over that weekend into Monday.  There were a couple incidents with other patients where he thinks he is “helping”, like wanting to push them somewhere in their wheelchair and the other patient doesn’t like it.  But he doesn’t stop.  And he hasn’t been as easy to redirect as he was in the past.  It sounds like things escalated a little and there were raised voices involved on both sides.   There was another incident over a puzzle.  He wanted to help another resident work on a 25 piece puzzle of the United States.  Sometimes this is ok, and other times the resident just wants to work alone.  This was one of those times, but my dad wasn’t getting the message.  It sounded like it turned into an argument.  I can’t help but think how this sounds like an incident that would occur in a preschool classroom. 

She put our concern about the Vitamin D on the doctor’s board.  But it sounds like these were gradual changes that occurred before they started him on it.  She said the staff talked about it and now they understand that they would need to take more time to redirect him.  Whereas before it was a quick “Hey, let’s do this instead” was all it took, now they might have to try a different approach to keep things from escalating.  It also sounds like it may be on the lines of what we saw at the end of our last visit.  He was on a mission, and nothing was redirecting him or sinking in.  He wasn't unpleasant about it, he wasn't trying to be difficult, but the connection just wasn't being made.

She thinks it may be a sign of a decline.  It’s just so wrong.  I try not to let the severity of this impact me too much on a day to day basis.  I am happy he is in a safe place that he seems to like, he is being fed real meals every day, his health is being monitored, and they generally seem to care about him.  But other times it really hits home that my 64 year old father is in a nursing home.  He’s completely mobile, but he’s in a nursing home.  In a locked unit.  For his own good.  He would have hated this if he was in his right mind.  Brilliant mind that he once was...

VA2K - Surprise Weekday Visit

We saw in the VA newsletter that they were having a 1 mile-ish (actually, a 2K) walk on 5/21.  We thought this might be a nice way to get dad outside and enjoy some of the nice grounds of the facility, so we decided to go for a visit.  When we got there we realized it might be tough to get dad to change his routine and spend part of the day outside, rather than shooting pool during our visit.  He really seemed to have no interest in getting outside and leaving the pool table.  We decided we just needed to be firm and tell him this is what we were doing.  He agreed, so we walked over. 

The facility is so large, it was practically a mile to walk over to the pavilion outside where they had sub sandwiches and some food and music playing for the walkers.   He was dressed in sweats, which was way too warm for the weather.  I was sweating just watching him, but the temperature never seems to bother him.  Once we got to the pavilion we decided to just sit and eat rather than doing the walk.  He had already walked far enough, and we didn’t want to push him too much.  So we got our food and sat at a table and enjoyed the music and sunshine.  It felt like a normal spring day at the park with normal conversation.  He often commented on the different songs, whether he liked them or not, how old they were and who sang them.  It sometimes surprises me how his memory has held up for certain things.

After we ate, we started on the long walk outside again to shoot one more game of pool before we left.  He started saying he needed to use the bathroom.  Which he always does because he drinks 9 cups of coffee and 3 cans of pop and bottles of water and whatever else he can find because he seems to have no sense of fullness when it comes to food and drinks.  He started making grunting noises as he was walking which was a little unsettling.  My sister and I looked at each other like, are we pushing him too much?  Is he too hot?  Is he going to the bathroom right now?  We picked up the pace to get him to a bathroom faster, but he kept saying he would be ok.  He didn't seem anxious about it at all.  But we sure were.  We made it back and all was fine. 

Since this was a weekday, I needed to be back early to get the kids off the bus after school.  I was paying careful attention to the time, and when a game wrapped up around the time we needed to leave, I told dad we needed to get going to get the kids.  He said ok.  But then proceeded to break the balls and start a new game.  I tried again, “dad, we really need to leave because the kids are going to get home and no one is there to get them off the bus. We don’t have time to play a new game.”  He said “oh, ok” but continued to play.  He was pleasant and it didn’t seem like he was trying to be difficult.  I think he was just confused and it just wasn’t getting through to him.  I worried maybe we had pushed him too far off his routine, especially with the heat and the long walk.  So I let it go, let him finish the game and prayed it would be a fast one.  Then we rushed him back to his room.  He seemed more confused than usual and kept forgetting we had just eaten, asking when we were going to lunch and saying we could stop at the cafeteria on the way.  He’s done this before, but this was worse and took a lot more reminding and redirecting than usual.

As we were leaving, one of the nurses made a couple comments to us about some unusual behavior he had been having the past few days.  She mentioned he had seemed more agitated and had been acting out a little with a couple of the other residents, which was very unlike him.  It was unsettling and I had a ton of questions, but we didn’t have time to discuss it much or ask what she meant.  It was kind of a downer after a visit that started out so nice.  There were times being outside on the nice grounds of the facility, where it was easy to forget he is sick.  We left that day realizing it would be unlikely that we would be able to take him offsite for some little day trips this summer like we were hoping to do.

Visit 5/17/14

Today was a good visit.  Pretty typical.  Dad was in a good mood and happy to see us.  But there was one thing that stuck with me and will continue to haunt me.  Another eye opener for how this disease really affects your brain.  He showed us a couple puzzles the social worker gave him to work on.  He said they're pretty good ones.  They were children's jigsaw board puzzles, the kind where you put the big sturdy piece onto the wooden board.  The kind your 2 year old can handle with ease.  He commented that these were nice because the same picture on the piece was also on the board.  I am trying to hope that this is just his general pleasant attitude that he has towards everything now, and that he really can handle something more difficult.  He does still handle his crossword puzzles and word searches fine, and his conversation is more intelligent than you'd expect from someone with a brain disease - other than the judgment factor.  It definitely caught me off guard and was a sad reminder of how his brain is deteriorating.

Manipulation continues to haunt us

There are many facets to the story we haven't covered yet.  A big part of it is my dad was really taken advantage of by one woman in particular.  He believed she was his friend.  As he got sicker and his judgment became worse, she latched on and pretty much took all financial control.  He was in his mellow/I'll sign whatever you want phase and he pretty much consented to anything and everything.

We had heard from the police that this person was very well known in their department and has been on their radar for years.  She's very good at manipulating and working the system.  We met with our lawyers and there isn't much we can do to prosecute, because we didn't have a diagnosis at the time all of this money was being spent, and he consented to it. 

The employees that worked at the bank he frequented were aware of the situation as well.  She would often come in with him and flirt with the male tellers.  They said he would do whatever she wanted when she came up to the window with him.  But since he was consenting, their hands were tied.  They even came in one day trying to get a home equity loan on his house.  He went outside to smoke and pace, which became routine with the OCD aspect of his disease.  He could not sit still.  And I think sitting there and trying to answer questions he didn't understand was uncomfortable for him.  So he said he would agree to whatever she was trying to do.  Luckily his credit was already too screwed up for the loan to go through. 

We found all this out at the tail end.  We were too late.  The money was gone.  Investments that he had spent years building up were drained, insurance policies all cashed out, and credit card debt racked up in the double digits. 

But the manipulation did not end there.  Over time we learned she had his car and used it for her own personal use.  She totaled it so he bought another one on his credit card, and she took that one too.  He didn't even have a key for it anymore.  It was hers.  He never said no.  Every response was a passive "that sounds like a good idea".  We found out at one point she had his drivers' license as well.  Credit cards were opened for stores that he in no way would ever shop.  She set up the squatters that lived in his upstairs spare bedroom, who trashed the place.  We'd find things out in passing.  Like "dad, why is your basement trashed?  what happened?" and he'd tell me the girls upstairs had a party down there with some of their friends.  Drugs involved I'm sure, based on what was left behind in their room when they were finally kicked out.  It is so utterly sickening how somebody can take advantage of a person that is clearly not in their right mind.

When my dad went to the nursing home we wiped this woman's identity from everything he owned.  Got him a new phone, took any evidence out of his wallet, and he never once brought her up in the 3.5 months that he's been there.  She used to call me, trying to get on our good side with the ploy that she was trying to help him.  But once he was gone, she never once tried to call and find out how he was doing.  Until now, that is, when she needs money again... Yep. She's back.

She called a couple days ago and left me a message about the car insurance on my dad's old car.  The one she used as her own.  She strategically set up the insurance policy putting herself as the primary policy owner, and him as the secondary.  But had the payments automatically deducted from my dad's bank account.  Payments that were nearly $200/mo, because of the DUI history.  When we had the police take the car back from her a few months ago, I couldn't cancel the policy because my dad was on as the secondary owner.  They really couldn't even talk to me, even though I have power of attorney.  So I put a stop payment on it on the bank's end and eventually closed all my dad's bank accounts.  

 

Her message this week said that the collections department has been bothering her and they need proof that the car is no longer in her possession/or under my dad's name before they can cancel the policy.  She said they talked to my dad and he agreed to pay the open balance.  (Yes, you read that right).  I called the insurance company and although they couldn't talk specifically about the account, they said that it is the primary owners responsibility to pay all outstanding debts.  So basically it doesn't affect my dad whether it is paid or not.  Finally something backfired on her.

 

We decided to call the nursing home to see if my dad had gotten any calls.  And sure enough she had called and talked to my dad before she called me.  No one has heard from her since he moved to the nursing home in February.  But apparently when she wants money, she knows how to reach him.  The staff said they were leery of the call.  They overheard my dad saying he would have to check with his daughters, but didn't know what he meant.  I cannot even fathom why she would think that calling him would ensure her bill be paid off.  She knows he has no access to his accounts.  What is he going to do from a nursing home?  All I can think of is she knows it will make us mad if she keeps harassing him, and it will get us to pay the bill off. 

 

At this point the staff cannot legally restrict calls, but they assured us they will do what they can to try and deter and screen them for us, and keep us in the loop.  I'm just scared that this was a reminder to him of his past, and he's going to start saying he wants to go home.  I cannot believe how low someone can stoop.  Even her. 

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.