Getting into the VA Home

Everything seems so smooth now, that I forget how hard it once was.  I can’t believe this was 2 years ago now.  And thinking back on it, I can’t believe some of the craziness we went through.  Sometimes I think it’s probably best I waited 2 years to go back and revisit some of this stuff.  It’s such a relief that we are in a better place.  The disease is worse, and it’s hard to watch the decline.  But it’s a blessing he is where he is, and it’s nice to be reminded of that sometimes.

We had known throughout the diagnosis process that we would need to find a place for my dad to live.  We knew we couldn’t take care of him and keep an eye on him 24x7 , not to mention keep him away from the bad behaviors he so badly craved and obsessed over  every 15 seconds, like alcohol, roaming the streets looking for cigarettes, spending money...

But we had no idea how we would get him to agree to go, how he would afford it, and what place would be willing to put up with his behaviors.  He was still young, active (only 64), and looked relatively healthy compared to anyone else being placed on a wait list for nursing homes.  We weren’t sure where he would fit in.

Our uncle suggested the VA Home in Sandusky.  They had already visited it a few months back and had good things to say about it.  But it was so far.  And I felt weird about going with the first option without doing some more research.  I overanalyze everything, so I wanted this to be no different, to help ease my conscience.

I made lots of phone calls, learned more than I ever wanted to know at my age about Medicare (even though he was still a year away from eligibility), looked into how we could increase his social security/VA benefits, and very soon realized my uncle was right.  Besides the outrageous cost that my dad could not afford, there was not one single facility that would allow smoking.  To me, I liked the idea of a nice and updated assisted living facility that would be close by.  But I knew he would never be happy if he couldn’t smoke.  And they would never be able to keep him safe and on-site, because he’d be in constant search of a cigarette.  They’d kick him out in no time.

So our research went back to the VA Home.  The application process seemed simple enough.  Just some forms to fill out, some medical records needed, and voila, right?  WRONG!!!  Being stuck in the middle of the VA (US Department of Veterans Affairs) where he got his medical care and diagnosis from and is federally funded and the VA Home in Sandusky, which is state funded was one of the most ridiculous experiences I can ever remember going through.

After I submitted the application and the paperwork and followed all the instructions on the VA Home’s website, (as well as from numerous phone calls with the Administrative side of the facility itself) I was told it could be a month or so before we heard anything.  By the time I heard back, I was told they didn’t have any of the medical records they needed.  Well that’s weird, I thought.  But I figured ok, I’ll just call over to the VA myself and get them to send the records again. 

I don’t know if I’ve described before what it’s like trying to get someone on the phone from the VA before.  But it’s a crazy process.  Voice mail?  Who needs voicemail when you can call and listen to a ringer over and over and over again, only to have it click off and hang up on you?  And when you do finally get ahold of someone, you are starting over from square one trying to explain the situation and what is needed.  Wouldn’t it be nice if they had a computer system they could just look up a patient in and catch up quickly?  Well. They. Don’t.  It takes several hoops to jump through to just get ahold of someone from his family doctor’s office and to get them to agree to forward any records they have over.  But when you do that, you find out they really don’t have any records to send anyway, other than maybe a recent flu shot.  Records?  Who needs records?  I still don’t understand why the real diagnosis from the initial neuropsych testing and the MRI showing the holes in his brain were not enough, but they weren’t. 

And ready for the kicker?  After all this time waiting for the application to be reviewed and told we needed more, and then tracking down what we could from the VA again, we were told that the information was now OUT OF DATE.  It was beyond 30 days and it was now TOO OLD…  Are you kidding me?  Are you saying he needs to go through this testing again?? Do you understand what we went through in the first place to GET him to these tests?  Do you realize you can’t even get an appointment with the VA without an 8 week wait?  I remember asking the social worker from the VA Home what happens if we can’t get everything they need, and she simply said well then he doesn’t get in.  She explained they need to be able to determine his correct level of care. That they are audited by the county board of health, and they check the dates.  It felt like I was trapped in some twilight zone.  There was no way to win this.  And even if we miraculously got them what they needed, after they reviewed everything, would they agree to let him in?  Would they find out about the alcoholism and say they can’t take him?  I can’t even remember it all now because I think I blocked it out.  But somehow, someway we scrapped together what they needed.  We got his doctors to sign what they needed to sign, fill in some physical BS stuff, and the VA Home FINALLY agreed they had what they needed.  We just needed to wait for their answer.

I don’t know that we ever got a YES, but we got an invitation to come check the place out.  So we scheduled a visit with my dad.   He said he was interested in checking it out.  As if it was a nice day trip we were taking him on.  We carefully tried to hint that he might want to live there, that he would have his meals cooked for him daily, he’d never run out of food, he’d have cigarettes, and his finances would be managed.  He’d have things to do.  He agreed he would like to see it, but didn’t know that he would want to stay there. 

We knew the VA Home has a few different levels of care.  We were hoping he would qualify for the assisted living where he would still have his freedom.  We did our best to coach him in advance.  We went over questions they might ask him, reminded him what he can still do on his own.  Gave him a cheat sheet of what medications he needs to take and when.  He seemed to get it, and we just crossed our fingers he would pass their tests and be willing to sign paperwork to enroll.  We had our POA papers, but I didn’t want to have to force him if he didn’t want to.  But I also knew he couldn’t stay where he was, and I didn’t know where else he could go.

I remember the day we picked him up.  He was dressed up in an outfit he used to wear for Christmas.  He had on his dress shoes and nice overcoat.  I was so relieved he wasn’t in his usual ripped up dirty sweats.  It made me so sad to see though, because he looked so normal and I felt like we were trying to trick him into leaving his home.

The drive down went ok.  We were so fortunate to have our uncle come with us, because the thought of getting him out of the house and kept calm the entire drive to Sandusky brought me a lot of anxiety.  He commented a lot about the scenery and told us about all the things he would like to do and try.  Things he never used to discuss, and I’m not completely sure these were really things he wanted to do, or if his brain was in such a positive phase from the disease (which was a nice change from the last 10 years) that anything and everything sounded good to him.

When we got into the assisted living meeting room, you could sense him shutting down.  He was very quiet and withdrawn.  He seemed like he didn’t want to be there, and I was praying he wouldn’t say he wanted to leave before we even started.  A nurse from that section talked with him a little to see if she felt he could handle living independently with them.  I think we were all a little naïve at how bad off he was.  We figured he’d gotten by on his own this long, and all he needed was a little extra care.  But the nurse came to speak with us after and said she did not think he could handle the assisted living.  They really are on their own.  It was more independent than I even realized.  They come and go as they please, rooms are inspected monthly…he’d probably leave site with the other guys and go to bars non-stop.  He’d spend money he didn’t have, and he’d probably burn his room down with a lit cigarette before it was inspected in a month’s time.  We were all a little disheartened that this nurse could pick up on his condition this quickly and knew he couldn’t handle it.  It was eye opening that he was worse than we were willing to accept.

So we went over to the nursing home side of the facility feeling dejected.  Because after seeing the assisted living, this just looked and smelled like a nursing home.  The residents were easily 20 years older than him, most in wheel chairs and not able to get around.  When we sat down to meet with the nurse from this side, we discovered they were interviewing us for the locked care section.  That was not what we were expecting.  Lock down at age 64?  How can we do this to him?  We convinced them to let us consider the regular nursing care instead during one of my dad’s many agitated smoke breaks.  He asked if we thought he’d take off and be confused and get lost.  We said no, he’s not like that and his sense of direction is perfectly fine.  So he agreed to walk us through that interview.  I hated to admit it, but it did seem like a better fit than assisted living, it was just hard to accept all in one day.  At least the residents still had their freedom, but it was a little harder for them to come and go.  And they still had all sorts of activities and group events he could participate in. 

We took a tour of the facility and I kept watching my dad, thinking he must feel like we’re walking around a hospital.  We saw the rooms that housed 2 to 4 people.  You could get on a wait list for a single room, but it took awhile (meaning people had to die to get to your turn, which was an unpleasant thought). It was difficult to swallow.  But he kept saying everything looked nice.  I don’t know if he meant nice as in I could live here, or nice as in this is a nice day trip tour.  I don’t know if he really got it.

We then met with their financial administrators and went over paperwork and applications and this was the scary part.  They had all the paperwork and applications and consent forms completed.  We just needed to sign them.  I didn’t know if he would or if he wanted to.  I knew I could talk him into it, because he could be talked into anything, but I hated to do that.  But whether he understood or not, he signed himself in.  He was all set.  So this was really it.  He passed.  We passed!   We just had to wait for a bed.   It was a weight lifted. We were done with our day trip and heading home.  But I couldn’t help but worry when the bed was available, how were we going to get him here to stay?

Managing the Finances of an FTD Patient

So after taking over my dad's finances, it became apparent how difficult they were going to be to manage.  There was no way to stop him or any of his new "friends" from accessing the money.  His social security check would go in, and in a matter of days it would be spent.  We decided to open up a new account and have his checks go to the new account.  Since it was an account he wasn't familiar with, I hoped that by transferring over money to his old account a little at a time, we could buy time to get his bills paid before all the money was gone each month.  He'd make daily trips to the bank to withdraw money.  And of course, he never went alone.  I'd get updates from a couple of the bank tellers that knew the situation to tell me XX came in with him again to take out money from his account.  I felt like it was only a matter of time before they discovered he had a new account, and there was nothing that could be done to keep them from accessing it. But he seemed to understand he was being given an "allowance" now and he was ok with me taking over his bills.  At least this way he was guaranteed to have utilities and groceries.  And he seemed to understand that.  It actually worked out pretty well for a little while.  Until this popped up one day...

I figured I'd paste in my email to my family, since it captures the frustration better than I can now 2 years later.

                            

RE: An Overdraft Notice is Available Online (WTF)

Sent: Friday, November 15, 2013 10:30 AM
what?!?

 

11/13/2013

Auto Deduct

PROG DIRECT INS INS PREM

190.66

I don't even know what this is for! There's nothing to click on for more detail. I've never seen this before.  Is this that insurance X was talking about - she had a policy set up with her and him?  So of course he's paying it.  Am I supposed to call her and tell her to cancel?  Is it really $200 a month?  This is just a never ending battle and I want to throw my hands up and say forget it.  Now he's in the hole $200.  Is he going to keep getting NSF fees until 11/20 when his SS comes in?  Well hey, I called the lawyer on Fri and again on Monday.  at least he's called me back....NOT. It's only been a week.

 

Sent: Friday, November 15, 2013 11:26 AM
I called the bank to see how many more fees he's going to incur.  She said he'll get another $28 on Monday, and then his SS should be in before the next one.

 

I asked about any accounts I can put myself on with him where he can't access the money and she said there are no options without guardianship or power of attorney.

 

Maybe I'll have to use one of his checks next time and write myself a large check, put it in my account and pay his bills that way.  What a pain.

 

I also called Progressive to see if I could find out more about the policy and how to cancel.  Of course they wouldn't give me much info. since I'm not on the account.  I explained the situation with dad and how he's being taken advantage of.  They said "hypothetically" I can't do anything, and neither can dad.  X set herself up as the primary policy holder and dad as the secondary.  So even if he wanted to cancel, he couldn't without her approval.  Basically all we can do is set up a stop payment with the bank and eventually it will get canceled that way.  Silver lining is he assured me this would impact her credit and not his.

 

A couple months later I was able to close these accounts down completely and open up a new joint account between my dad and his children at a new bank.  He didn't know how to access it, but didn't need to.  We took him out for his errands, brought him his food, and not too long after he was placed in the VA Home.  Now his finances are a breeze, and we are so fortunate he is able to be where he is.

 

He unfortunately received a call from X about six months later while he was at the VA Home. She wanted him to pay the outstanding insurance that we put a stop payment on and apparently was impacting her credit now.  How she thought he would be able to access funds while he was sick and living in a nursing home is beyond me.  What goes around comes around lady.

 

 

 

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…

 

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...

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. 

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.

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.

 

 

We moustache lots of questions

Yesterday was the first assessment appointment for dad at the VA home, so my sister and I went armed with questions.  When we arrived, we walked into a room with several people sitting around a table, which felt a little intimidating at first. There were nurses and nursing heads, dietician, activities director and our super nice social worker.  In fact, we like her even more than the first one from the nursing home side, so that's a nice bonus. 

I was kind of hoping they'd go over dad's charts and give a play-by-play on how he's doing but they started by asking if we had questions.  We asked how he was adjusting and things like if he's sleeping, participating in activities and if he seems fazed by being in lockdown.  So far, so good.  They said he's very pleasant and nice to everyone and he's been participating in some trivia games and the activities director even does some one-on-one time with residents and played some connect four with him.  It was hard to hear her explain how he seemed to grasp the concept but couldn't quite come up with a win on his own. She even asked if he's played it before and my sister and I looked at each other like, "did he?, are you kidding?" I don't think either of us could beat him at that game. I said he was "sharp as a tack."  So that sort of tells us about his cognitive skills and where they are heading.  But we were happy to learn that he happily participates. 

He also works on his usual crossword puzzles and word searches and watches TV in the common area.  We were told that he has no issues with meal time or eating but the only flag on his chart is getting him to shower.  We suggested that they don't pose it as a question to him, but rather tell him it's his turn on the schedule.  It's also quite possible he's forgotten what to do as we explained a time when we asked him to shower, handed him brand new soap, heard the water turn on and he later emerged fully dressed but never opening the soap.  Again, sad. 

They said he seems to be sleeping but it didn't sound like it was consistent but they don't seem to push it on that ward as I think those with brain issues just sort of do their thing and I just don't know how they function on little sleep, but they do.  He is still on Zoloft although they did increase the dose.  They said it will likely stay at 100mg unless something drastic happens where they feel an adjustment is needed. 

We worked out some kinks about signing him out of the lockdown wing to be able to take him to the areas where he can smoke and shoot pool.  Originally they had him on a 'do not serve' list for alcohol but it was enforced a step further that they didn't want him in that part of the facility after 1pm when they start serving.  We just couldn't let that stand.  How in the world were family members able to take him anywhere on a visit?  We can't always get there before 1pm and we usually like to spend an afternoon with him, sometimes joining him with a meal.  So they agreed that he is properly monitored when family is accompanying him and lifted the ban. We still will not let him drink beer, but it's nice that he can go shoot pool, which is something he now associates with family visitors who can sign him out. 

All in all, it was a nice visit.  But I have to say the toughest thing about the day was witnessing the music hour before serving dinner in the dining hall.  As we went on a quick tour thru the unit, we saw dad sitting at a table in the corner, while we heard music being played and an activities person using a loud, but calm, sing-songy voice.  Almost like a kinder-care atmosphere. We peeked in to see 95% of the residents who were in wheelchairs, just sitting there in a trance. Some sang along, some rattled a little tambourine, and there was dad - just sitting.  Heartbreaking.  But as we approached him, we noticed he was flipping through a military magazine so that helped.  We joked if he was going to sing, knowing he'd never in a million years do that, even before there were holes in his brain.  He laughed and said "no." So we joked that maybe we'd go sing, and he laughed some more. He knows we'd never do that, either! 

Oh, yeah, and one last question we didn't need to ask was if he could see a barber.  We noticed that not only was the scruffy beginnings of a beard he came to the home with shaved off, but so was his moustache! It was like, "that's not our dad!" We've never seen him without it.  Mom said he grew it in Vietnam and has never been without it since.  Once we got used to it, it's kind of nice.

But, as if he wasn't already the youngest resident over there, he just (literally) shaved off another 10 years or so! 

One week

Dad made it through one week before being moved to another room.  We were told he was on a wait list to move from a quad to a semi-private room.  But this wasn't that.  He was being moved to the dementia wing - lockdown.  We always knew he'd end up there at some point, but not this soon.  He's 64 and completely mobile and that seemed to be the trouble. 

From the moment we dropped him off, he seemed like a kid in a candy shop, exploring every square inch of the facility within the first two days.  Always on the go, which we thought was a great thing.  He was finding interests and things that he enjoys like shooting pool and also found the designated smoking areas without too much trouble.  We felt confident that by setting him up on a routine where he has to ask the nurse's station for his cigarettes, it would prevent him from just lighting up whenever and wherever he wanted.  It was working well. 

It was when I called him the next morning after dropping him off that we learned something odd.  At first he told me just how much he was liking it there and that he's been playing pool and met other veterans. It really warmed my heart that he was enjoying himself and wasn't asking when he was going home.  But then he said that some guy told him they started serving beer around 1:00 p.m. and he was looking forward to getting a couple.  We learned the hard way that he can no longer handle alcohol with his brain being the way it is.  My husband and I had to carry him into his house around Christmas and he was in such bad shape, I prayed he didn't die that night on the couch.  We had been vigilant in keeping him away from his beer ever since. 

I thought that can't be right.  They can't have a bar on the facility, can they?! I let it go, thinking it might have been one delusional resident leading another.  I ran it past other family members and even a few coworkers and they all thought it wasn't worth stressing over because how could a nursing home facility serve alcohol when they've got residents on all sorts of medications or with issues that would not be able to handle drinking?

The next day, my sister took a turn to call him and she said he sounded off. Her gut instincts told her something was not right.  As they talked, he again brought up the beer, telling her he had a couple while shooting pool.  We think he only had a few bucks on him and probably couldn't get many, but that wasn't the point.  He now knew  where the beer was.  He found it on the very first day there and with his OCD tendencies, it would become a regular stop in his day.  And with his FTD, unable to know when to stop drinking it.

Calls were instantly made to the social worker and nursing staff where it was confirmed that they have a veteran's hall which serves beer six days a week for EIGHT hours a day!  The challenge is they have a section with dormitories for residents who can live independently, and could likely handle a few beers.  But there's no stopping anyone from the nursing home side from going there, too.  I suspect this may not be a huge problem because most of the nursing home veterans are well into their eighties, in a wheelchair, some missing a leg.  Not exactly the same as our mobile and swift, young dad. 

So they put him on a "do not serve" list and told us they have police who can look out after him.  We didn't exactly want him to feel punished and threatened while trying to hang out in a part of the facility that he actually enjoys.  It was a mess.  We decided to go see him a couple days later on the weekend to scope it out for ourselves.  We found that we had to really deter him and distract him about not having beer, but the nice thing about his current personality is that he's so agreeable.  He never puts up a fight about us telling him when he can't do something. So maybe this wouldn't be so bad afterall?  Maybe as long as a staff member tells him no, he'll agree and forget about it?  We saw how much he enjoyed walking around and playing pool that we just didn't have the heart to have him banned from that particular building. 

The next day we got a call that they had to put him on a one on one order where someone had to "babysit" him all day and that he's hardly slept, if at all, for the last four days.  Well, it's no wonder he's becoming unmanagable.  He needs sleep!  Turns out that the OCD tendencies were really ramped up and he started pestering many of the veterans for beer, cigarettes, or money to buy both.  He started wandering into areas that he didn't belong, and even lit up inside an area clearly marked "no smoking".  We could tell that he seemed tired and when he is, his judgement is worse and he gets more forgetful.  We were starting to feel like none of the staff seemed to want to understand this disease and that it's not your general dementia.  Why couldn't they simply suggest to him to go sleep? 

We continued to check in on him every day, with each of us taking a turn calling his cell to see how he sounded and to remind him of what he should and shouldn't be doing.  We also checked in with the nurses to see if they had anything more to report and to relay our suggestions on what works for us when managing his mind.  A few days later he was moved to lockdown. It absolutely broke our hearts.

If we thought he was the youngest veteran before, he certainly was going to be now.  It killed us to think about how he had a week of absolute freedom to do what he wanted and was now being reduced to a couple hallways, his room that he's sharing with the oldest resident there, and has to have a staff member at his side for every activity he would like to do, including smoking.  I think they even have to light the damn cigarette for him, too.  The walks he enjoyed, the pool table, the coffee club - all gone. 

After a few lengthy conversations with heads of nursing and a new social worker for his new wing, we began to accept their decision. It was getting to the point that they feared for his safety as the more he pestered residents the more angry they were getting and were beginning to threaten him with physical force.  It angered us that it was so unfair that the residents with most freedom, who could actually live on their own, don't have a clue about this disease, but we certainly didn't want the next phone call telling us that dad was severely injured by one of them, either. 

So they will take good care of him there and they have the staff best equipped to handle dementia care.  That wing has more staff per resident and more doctors than the other section, so we have to realize he's in good hands.  They said they will do some cognitive therapy and see if he improves and see if maybe he settles in more and that the zoloft he was given would calm the OCD tendencies down.  We've learned that he's finally getting some sleep and we hope that maybe he could move back to the nursing home side, but we won't hold our breath.