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?