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.