Bittersweet...

After a year on the market, dad's house finally sold!  Seeing it in the state it was once in, and all the issues it had, I never thought we'd be able to sell it for what it could be worth.  But we actually did better than I expected, so it was worth the wait.  Today is closing day. 

In hindsight, it probably was for the best that it took this long to sell.  It took me awhile to come to terms with this.  Selling his home and him having no idea.  It feels so wrong.  But I know he can never live on his own again, and it needed to be done.

As I am going through my dad's files today to pull out his original durable power of attorney papers that we will need for the title company tonight, I am reminded of what a painful day that was getting them signed.  One I will never forget.  There were so many times I felt like we were tricking him in to getting things done that we needed.  I know he didn't fully understand our requests, but we started to realize that he would do whatever we asked him to.  It was sad because we realized (too late) that this is what was going on with outsiders looking to take advantage of him.  And they had for years.  I know we had his best interest at stake, we were helping him, and it was for his own good.   But I still felt like I was being sneaky or doing something wrong.

After much research and soul-searching, meetings with lawyers I didn't fully trust and who could never seem to answer all my questions, we decided not to follow through with filing for guardianship.  I struggled with my dad being served papers notifying him that I would be his guardian, going through the courts for it - maybe even seeing my dad in court...not to mention it was costly, time-consuming, and would require us to go back through the court for every decision made.  I lost sleep over it and I couldn't do it, there had to be another way.  The lawyer I worked with kept pushing that was the only way.  So I kept searching for another answer.

I made an appointment with another elder-care attorney's office.  They were amazing.  Night and day between the two offices.  The receptionist who took my call was very knowledgeable and kind.  The lawyer returned my calls right away, got us in for a meeting right away.  And best of all, disagreed with what the other lawyer had advised.  Guardianship was the last thing we wanted to do, if we could avoid it.  If he was at all willing to come in and sign durable power of attorney papers, a living will, etc. for us, it would be so much simpler, much less costly, and much much quicker!  I was so relieved they were willing to go this route with me.

They got us in within the week, had the papers drawn up within days, and had us come back with our dad to sign everything.  This is the day that will always be ingrained in my brain.  It turned out to be a snow day for my kids.  So we all took a trip up to the lawyers office.  My sister had the task of surprising my dad in the morning and getting him out for one of his last appointments.  He of course obliged and was happy to get out and see us.  He showed up in his not so clean sweatpants, looking ragged, confused, but happy to see us and the kids. 

The lawyer did their best to explain why he was there and kept asking if he understood.  He would say yes.  But when asked if he could explain back why he was there, he couldn't.  Long uncomfortable pause, and then "no, I can't."  So once again, she would try to explain differently, in simpler shorter terms.  And when asked if he was ok with everything he'd say yes.  But when asked to repeat, silence again.  He just couldn't. It was heartbreaking and so uncomfortable.  You could feel the tension in the air, the lawyer trying so hard to get him to understand, the witness quietly waiting, my sister and I silently willing him to be able to put this into words, terrified they would not allow him to sign and force me to file for guardianship.  All I could think about was how brilliant he once was.  How successful he was in his business, you couldn't get anything past him.  His brain calculated numbers and figures with ease.  These are the things WE would go to HIM for.  And now he was stumped.  At a loss for words.  He truly just did not understand.  I think he was embarrassed and uncomfortable, but he still sat with pen in hand waiting to sign.  And then they let him, and so he did.

Now it allows us to take care of him and do things like sell his house without him being involved or even knowing about it.  And I feel so so guilty.  But I have to keep thinking my role is to take care of him and have his best interest at heart.  And I do, and I know we're doing the right thing.  It just feels so wrong and unfair that we have to.

I feel like with some of the stuff that happened in the end that just fell into place, that there had to have been a higher power watching over us. This lawyer was truly our savior.  They had so much compassion for the situation.  I feel like they put themselves at risk for this.

Turns out this visit was just in time.  The following week my dad was arrested while trying to get into parked cars looking to bum a cigarette, and from there he went straight to the VA Home.

Continuing down the path to find a diagnosis...

We lucked out and got another appointment with the neuropsych dr. the following week on 9/23/13.  My uncle took him to this appointment.  He said he basically read from the summary sheet I wrote up to explain what we have been seeing.  It's so hard to explain the changes from before and after in a short appointment and get the severity across - all in front of the patient.  The more that I read about FTD and other families experiences with the disease, these symptoms sound like the classic textbook case.  Here were some points that were noted:

• Complete personality change over the past 5+ years. Has worsened in the past 6 mos - year.
• Everything he worked for over the years is gone - all investments and savings, life insurance policies - all cashed out.
• Almost $30,000 in credit card debt.
• Signs up for book clubs, DVD clubs, magazine subscriptions, sweepstakes scams - any junk mail he receives, he will send in a check and join.
• Liens filed on his business for unpaid payroll taxes.
• House looks like a hoarders nightmare with years worth of mail piled up.
• Doesn't appear to understand how to control the spending in his bank accounts - overdraws his account monthly, spends twice as much as is going in.
• A female is exploiting him and he consents to everything - checks written to her, credit cards opened for her, she keeps his car for her own personal use, goes into his bank with her so he can withdrawal money for her.
• Spends the day doing crossword puzzles, talks to himself, shuts down when you try to bring anything up, doesn't appear to comprehend the severity of the situation.
• Living conditions are unsafe, hygiene is bad, he is not the same person he once was.

These points were read to the doctor in front of my dad who didn't appear to react to any of them.  The neuropsych set up a cognitive assessment to aid in his diagnosis.

Upon leaving, my uncle did not know how my dad would react.  But it appeared to not phase him at all.  All he said on the way to the elevator was that he thought it went well...yet another point to add to the expanding list of strange behaviors.

9/3/13 First appointment towards finding the diagnosis

I've been doing a bad job at going back in time and putting some of the back story on here.  There is so much to this.  Not just the present situation, but how we came to the diagnosis, and some of the horrible incidents that happened long before we knew he was sick.  It tore the family apart and took many years to figure out why.  I always used to pray that we would some day find out that he felt bad for all that he did, and how he treated the family.  I just wanted to know that he recognized it and felt remorse, even if he couldn't ever admit it to us.  Never did I expect it to be a disease like this.  I should be relieved that it wasn't his fault.  But it just makes me more sad that this disease had to come in and ruin half his life.  And he has no idea.  With it being Veteran's Day, it made me think a lot about him.  Growing up, I never used to give much thought about his service in Vietnam.  It was something he never talked about.  But the older I get and I am able to understand and appreciate what these veterans have done for us, I am truly proud of him.  I also can't help but wonder if this disease stemmed from him being in Vietnam.  How unfair for a person to be drafted, go to war, and then end up with this horrible life-altering disease because of it?  We will never know.  Unless of course another family member gets it and we discover it is genetic.  Either way, it's unbearable.

So getting back to his very first appointment leading to his diagnosis.  It was with a social worker from the VA on September 3, 2013.  My Uncle took him to the appointment with my one page summary of his symptoms - recent and past  - in hand.  Here is an email I sent my family about it after I had spoken to the social worker after his appointment:

Dad signed a consent form so that she could speak with family members for his health issues, so she was able to call me and talk.  I think this stands for all his future medical care.  She said he wasn't very forthcoming, which isn't surprising.  And not new to her either, dealing with all personality types there.  She picked up on his hygiene/appearance.  He told her he showers daily, and she tried to put it tactfully that she didn't think he showered today.  He told her he drinks 2-3 beers/day.  I told her that isn't true, and she knows she can't go off what a patient says, she said they lie all the time.  She said she gave him a memory test.  It doesn't hold a lot of weight in diagnostic testing, but he did poorly on it.  She said it's obvious (X - insert name of woman who took advantage of him) is involved big time and she feels she is exploiting him.  She said she called twice while he was in the appointment, and it was clear she didn't want him there.  (Strange how he answers mid-session).  I think his issue is he shuts down when he's asked questions like this, but since he wasn't able to go out and smoke or dive into a crossword puzzle, this was tough for him.  I think he shut down by not having a lot to say.  She said she's going to write it all up to his doctor and see if she can get him in sooner, and get him in for blood work also - that should be done through some sort of geriatric testing, but he needs the papers from his doctor.  I asked if she could have the dr. call me if we can schedule him sooner, because calling dad won't do any good.  Especially if X has anything to say about it.  The social worker wants to give Adult Protective Services a call.  She thinks its warranted in his case - even if I said no, she would probably be obligated to call based on what she found today.  It may speed things along, and at the least help us get guardianship over his finances sooner.  My other thought, is would he just sign that over to us right now?  Not really sure what he needs to sign, or how that is done.  I guess that would be another call to the attorney's office.

And here was my uncle's perspective after the appointment:

I took your dad to his VA appointment today - he was a little puzzled about the reason for the interview but co-operated when I explained we were going to initiate the process toward additional VA benefits. He indicated that X had already told him that she felt there were opportunities for further benefits.

We met with the social worker and I explained to her in detail the circumstances of your dad's financial and behavioral problems. I described his relationship with X and the apparent level of control she has over him.  I tried to make clear the extent to which we feel she has taken control of his life.   Your dad was surprisingly unresponsive during my presentation and offered very little comment. Ironically, during the interview, X called your dad's cell and her tone and demeanor toward him during the call (the phone volume was high enough for all to hear) spoke volumes to support our description of X and her influence over your dad. Incredibly, she even called back minutes later with a "furthermore".  The social worker was taking notes throughout -- the episode was not lost on her.

She got your dad to agree to respond to a lengthy series of oral questions - a psychological and cognitive assessment I imagine. -- he was a little irritated by some of the questions but completed the test anyway.

She feels it is necessary to accelerate the time until his next doctor visit. She said she will arrange this with the doctor and call us to advise the new date for the examination. Your dad was agreeable to this and said he would co-operate.

She also got him to sign a consent form which allows the VA to share his medical records and evaluations with you, your sister and myself.

So, that is how today went.

Let me know if any questions.

 

Looking back at this, I still can't believe how "easy" it was.  He cooperated for every appointment along the way, but we worried the whole time he would not.  He hated doctors and never went.  I think it was a fear thing.  It was so strange to us that he kept going.  We started out being kind of sneaky about it trying to almost trick him into going.  But we soon realized that wasn't necessary and he almost looked forward to getting out of the house and going.  It was such a blessing in the end.  The next appointment on the agenda was with the neuropsych on 9/16...

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...

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.

 

 

Update and 4/12/14 visit

Within the first week of dad's house being on the market, we've learned there's already been some traffic.  According to the realtor, there's a couple who might be interested, depending on a few questions they have for the HOA.  But the wife "loves it!" 

When I read the emails from the realtor about this, my heart sank.  I really felt like crying at my desk at work.  This is the moment we've been pushing for all these months, with the last several weeks exhausting ourselves to get the house cleared out and cleaned enough to have it be somewhat decent. It's still hard.  It still feels like we are being sneaky.  But this is how it has to be, there are no other options and we pray that dad continues to like the VA home and never asks to go back "home".  Once in a while he'll mention something about leaving, and so far he hasn't been able to make the connection as to why he's there or for how long.  This happened at our last visit when he said something like "I'm not sure how long I'll be here," but then he's easily distracted by something else and it passes. Within a minute he's telling us how he's gotten used to the VA home and that he enjoys it. 

I went with my husband and brother this time, so a smaller group.  As soon as we got to his unit, he was there sitting in the lobby, as he always does, in his winter jacket zipped up.  Too bad that now the weather is getting much warmer out and he's stuck in this "routine."  He was carrying a bag as we were checking him out of the unit to go shoot some pool.  When I asked what was in the bag, he said it was from the previous visit (our aunt and uncle - his twin brother, and our cousins).  He said, "I thought we could work on these while we shoot pool." It was a bag filled with all sorts of goodies and I thought it was sweet that he thought to bring them to share. Almost like when you entertain people in your home, you want to have something nice to offer your guests. 

He asked about my sister and brother-in-law and I told them the kids had soccer today so maybe next time.  He said he wished they were there because he likes playing pool with Mark. And then he went on to mention how he likes to play pool with Brett and Rick, too.  It's almost like listening to a child come home from school, asking how their day was. "I played with Billy and Timmy and Charlie today." Once we got to the member's lounge area, it became apparent he had a new routine/obsession.  He kept asking us to scratch his back.  All of us, whenever someone wasn't at the pool table taking their turn.  I had noticed he was in the same shirt he's been wearing for at least a month now and then I realized it's lined! No wonder he's itchy? He's wearing a shirt that should be put away for the spring and summer months, but the problem is his routine won't let him break from it.  Just like the winter coat.  I'm noticing that he's getting more and more repetitive in his conversations, especially about the visit itinerary.  "So we'll go to the museum then?  After this game, we'll head to the museum?  So we'll get to the museum before they close at 4? So after we leave the museum, we can shoot pool some more?  You guys ready to go to the museum?"

We had a nice visit - as one can probably guess, we played pool and checked out the museum and then went back to shoot more pool.  Apparently, when his routine gets a little bit altered, depending on who visits, it sticks for the next visitors.  No problem at all for us, we're there to see him and do what he wants, but if he can tweak a routine, why can't he change his clothes? 

So I spoke with one of the nurses that day about the itching and the clothing and he kind of laughed and said if he could just get him to shower more often.  I explained that he's in clothing that's way too warm and on the next visit my sister and I will be swapping out his wardrobe with spring and summer clothing.  We think that his winter jacket has a lining that can be removed, so if he's still set on wearing it, at least it will be lightweight.  This whole disease is very upsetting but there are certain things that are so unnecessarily frustrating.  We plan to talk to the social worker about their approach for getting him to shower.  It's not about asking him to, it's about telling him that it's his turn on the schedule. Even if they have to bribe him with cigarettes after.  This can't be the first time they've dealt with this sort of thing and they're lucky he's mobile.  Compared to most of the other residents, showering should be a breeze!

Hopefully, things will get better before they get worse.  We want dad to be comfortable and while being in a routine is comforting to him, he needs to be safe...and in short sleeves!