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.