Emotions

It’s been awhile since we’ve posted here.  Miraculously, dad recovered from his brain bleeds.  He went back to his nursing home and was put on hospice care.  We visited as often as we could those first few weeks.  And it was so hard to see him like that.  He was practically comatose in his wheel chair.  He couldn’t move his legs and needed a mechanical lift to be moved.  He could barely talk and could sometimes manage one word delayed responses.  He could sometimes feed himself, but mostly could not.  He slept most of the time and was often laid down by the staff to sleep for large parts of the day.  Sometimes his eyes would tear up, and we wanted so badly to know what was going on inside his head.  What was he feeling?  Did he understand any of this?  I think this was just a physical sign of the massive pressure in his head.  He should have had one hell of a headache, but he didn’t let on that he was in pain.  We brought in a priest to administer the anointing of the sick sacrament, and when we couldn’t visit we called daily for updates. 

The days turned into weeks, and he hung on and we saw gradual signs of improvement.  An occasional sentence would be spoken, moments of clarity, more movement, increased ability to feed himself.  And then one day, about a month later, I got a call from a very excited nurse who had just witnessed seeing him out of his wheelchair walking.  As if nothing had happened.  I really believe that everyone’s prayers brought him back. 

We were able to spend several more months being able to visit with more conversation and his upbeat spirit back.  We still never saw him up and walking, but now he could push himself around in his chair and participate in activities.  He looked so much better.

Problem is, he still has a brain disease and he is still declining.  And it’s becoming more evident within the past month.  So we are going to have to go through this all over again.  I just hope it’s a little more peaceful, it’s not as hard to watch the horrible debilitating symptoms, and we aren’t left with making such gut-wrenching decisions this time around. 

Strangely enough, he just graduated from hospice care last week.  They gave glowing reviews that he has improved so much.  And he has, up until this last month.  But for the last two visits, he is less and less the upbeat person, making conversation and trying to wheel himself around.  I worry there are so many staff changes going on at the Veteran’s Home.  Instead of seeing the same doctor weekly, they dropped their services and he only sees a doctor (who doesn’t know him) as needed.  He does see a rotating staff of nurse practitioners (who also don’t know him).  His social worker who we have loved from the start 3 years ago, has changed jobs and we have yet to meet the replacement three months in.  She doesn’t know who he was before this accident, and she doesn’t even work on the same floor he is on.  And now the added layer of care with the hospice team is rolling off.

When I went to see him this week, I found him in his wheel chair just outside the cafeteria door, sleeping.  Like he had just finished breakfast and that’s as far as he got.  I didn’t disturb him because I had a meeting with some of the staff.  An hour later I found him in another area of the hallway, sleeping again.  I asked a nurse if he was alright. She said, “oh yeah, he sleeps a lot”.  Well this is news to me, and I honestly hadn’t seen this since after his fall.  So I took him outside for a walk.  He perked up a little, but he still continued to doze on and off.  He doesn’t seem to talk as much, and the staff confirmed in the meeting that he basically gives one word responses and has appeared to decline cognitively.  But then they continued to say how great he is doing physically, and that he’s improved so much from the fall.  I am really hoping it was just a bad day these past couple visits, but I didn’t get that warm fuzzy feeling after I left the meeting.

This visit started to get to me more.  The disease and the progression has been very hard to witness.  But I feel like I haven’t really let it sink in.  Now he just looks tired, defeated, and sad.  I picture him sleeping in his wheelchair wherever he ends up during the day.  Now he blends in with all the other 90+ year old patients that this new staff is used to seeing.  But he’s only 67 and this is not him.  It’s really unfair, and it’s starting to hit me more.

 

All I have left is my faith that better things are in store for him.  I used to worry about how awful he was, and would he make it to Heaven?  Even after I knew it was the disease, did God understand?  But now I really feel that when God answered our prayers and he recovered from those massive brain bleeds, when the neurosurgeon said he hadn’t seen anything like it, it brought me a feeling of peace that he is with him. 

God's Plan

So any post from here on out is going to be difficult.  I'm not sure how to gather my thoughts because everything is so fresh.  But I know there may be some family that would still like to know the details we have.

Last Wednesday I got a call from the nursing home that my dad's behaviors have changed again.  He was much more subdued and was unsteady since Monday.  Then he woke up on Wednesday and couldn't get out of bed or feed himself.  Just the day before, he was walking on his own.  Nobody could quite put their finger on what was going on, but they just wanted us to know something was going on, and that they were scheduling him for a CT scan.  We left work to go see what was going on, hoping we could be there for the CT scan at the nearby hospital.  I know these things are supposed to happen at the end of the disease, but I didn't think he was there yet.  And I didn't realize it could come on in a matter of days.  This also happened to be my dad's birthday.  He is now 67.

I was afraid what we would see when we got to the nursing home.  His normal routine is to spot us as we're walking in, hop out of his recliner with a big beaming smile, and say he was hoping we'd stop by today and he was just dying to shoot pool.  This day he was sitting in a wheel chair because of his unsteadiness.  He saw us and it took a couple seconds, but a slow smile came to his face.  But that was it.  We saw he had a pile of cards in his lap that he had gotten from family and many volunteers from the veterans home.  We sat with him and tried to get him to look at the cards, but he would just hold them and stare.  He was very flat and could really only respond with one word answers. 

We found out since he was not scheduled for an emergency CT scan, he had to be scheduled as an appointment, and we weren't sure when that would happen.  The doctor was on site this day so he examined him with us present to ask questions.  We noticed while sitting with him for a little while that he did not look well.  He kept taking off his glasses and rubbing his eyes, which were goopy and he had big dark circles around his eyes.  He also seemed very wheezy, which got worse as he tried to eat one of the cookies we brought him.  The doctor put him on some antibiotics, a steroid, and ordered a chest x-ray to check for reoccurring pneumonia, along with the CT scan already on order.  Before we left we found out when the tests were scheduled, and the CT scan was moved up to Thursday at 4:30.  I left feeling maybe he's just sick with some sort of illness and the antibiotics will kick in and he'll go back to the way he was.

I got a call around 7 on Thursday from the veterans home informing me that he had been admitted to the hospital after the CT scan.  They found a brain bleed. She gave me the hospital number so I could call and find out more.  I was late for a prayer service we were attending, but it seemed like the most fitting place to be, so I went anyway and passed the message on to my sister to call the hospital.  We weren't sure if he was having surgery, if we should rush out to Sandusky that night, or how dire of a condition he was in.  After several phone calls with the hospital staff we found out he was stable and comfortable and that the neurosurgeon would talk to us in the morning about his options.  So we stayed home and waited until morning.

I got the call in the morning and the neurosurgeon wanted to know if I wanted him to operate on my dad.  There were 2 massive subdural brain bleeds on both sides of his brain.  He said he couldn't believe the size of them, and that my dad was even awake and responding to him.  I immediately thought, well that's just the "Sabol strong-will gene" at work.  He said it's a tough decision, a rough surgery considering my dad's current state, but he said he would do whatever we wanted him to help.  I of course could not answer this, so I asked if we could come meet with him.  So he got us in for an afternoon appointment.  I still didn't think anything was going to help me feel comfortable about deciding something like this.

My sister, my husband and I, along with my aunt and uncle, met with Dr. Braun.  He showed us the images of the brain.  He showed us the first CT scan that was taken the day of my dad's fall 6 weeks ago.  It was clear, with no signs of a bleed.  But it was sickening to see the large holes in the brain caused by the FTD.  The next image, that was taken the day before, looked better to me because the large holes were much smaller.  Until the doctor explained the blood surrounding the brain is putting pressure on the brain, closing off those holes.  Not a good thing.  The bleeds required surgery, and again he wanted to know what we wanted to do.  So we sat down with him and had a long discussion.

The brain bleeds are due to the fall he had 6 weeks ago, but he also believes there must have been several falls that we did not know about.  He may have fallen and not said anything, or bumped his head on the wall.  Reading up a little on these brain bleeds, I found that people with dementia are more prone to them because the shrinking brain creates more room for the blood to pool.  Basically the bleeds are speeding up the dementia process, putting him in the end stages now. 

Our options were to operate with a risky surgery that the doctor described as "torture".  He would need to remove several portions of the skull.  He would need drains from his head that may or may  not become infected.  He would likely be on a ventilator until (if) he recovered, and it may not work.  If the surgery wasn't successful, or the bleeds came back which was a possibility, he would require more surgery.  It would be a long road to get back on his feet, but he might never get there.  He said that he would not be able to come back the way that he was, that patients are expected to lose several IQ points, and an already demented brain would be worse. And if he did get there, the disease may have already progressed to where he'd be going through the same symptoms again and this time there was no turning back.  These are all stages that dementia patients go through, if they live long enough to get to them. 

The other option was to do nothing, and let him go comfortably.  I will admit it was still hard to decide.  Because we are fighters.  We never give up.  I know I don't, and I got that from him.  But at the same time I have to think of what he would have wanted...20 years ago when he was ok.  I don't believe he would want to live like this.  My sister and I often talk about how horrified dad would be if he "knew" he was exhibiting some of the behaviors he has, if he knew he was living in a nursing home where all the other patients were 20+ years older, now sitting in a wheel chair unable to stand or go to the bathroom on his own.  There's no way he would want to prolong this in an even worse state.

The doctor was very candid and honest with us.  He admitted that if he had been taken to a major hospital, they would have already done the surgery last night.  Big name hospitals that are all about "cases" and don't worry so much about what comes next with a person or their family.  And when asked what he would do if it were his family, he said there's no way he would do this surgery on them.  If it was someone that was otherwise healthy and didn't have a demented brain, then yes, that person could recover and live a normal life.  But not the state that my dad is in.  He felt it was borderline unethical.  He said he felt like my dad had been tortured enough with this disease and would he really want to prolong it when there is something better waiting for him in his future? But it was still our decision.  He said we had a day or so before he would need to proceed with the operation.

Even though the decision seemed obvious, I was still glad to hear everyone else felt the same way.  I'm always looking for signs and answers, and my aunt said something that made me realize we would be doing the right thing by accepting the doctors advice to leave him be.  She said she felt like my dad was sent to this hospital for a reason, and God brought this doctor to us.  In the medical field she has dealt with many doctors, and you don't find very many who would be this honest and candid with us.  And that maybe things are happening according to God's plan.  He gave us time after the initial horrific fall that nearly took his life.  He gave us time in the hospital to decide what is best, they didn't need to rush him to emergency surgery before we had a time to think things through.  And after talking to my mom later, she said all she could do the night before was pray.  Pray that we would have an answer and know what to do.

So we are leaving him be and will keep him as comfortable as possible.  Hospice will be taking care of him back in his own room at the Veterans Home where he is most familiar and comfortable with.  It may be days, or it may be weeks.  Only God has the answers.

A Big Scare...

It's been awhile since we've been able to get in an update.  But one is definitely needed now.  We went for a visit and my dad's quarterly assessment on Wednesday.  He wasn't quite himself.  Very hard to re-direct.  And even though he was so happy to see us and wanted to "kick our butts" in pool, we never actually played.  He sat at his table and kept telling us he was going to get up and take his shot.  But he never actually did.  He was off, and slower, and he had a bad cough.  I thought maybe he was coming down with something and just wasn't feeling well.  We took him back and went to his meeting. 

Not much new to report, just the overall general decline.  But he's still pretty active and conversational with the staff and other residents.  He's big into counting things, he likes looking out the window and counting the cars in the parking lot.  Or commenting and reading aloud everything he sees.  There will be some normal conversation mixed in.  He'll talk about the past like it was yesterday.  We even pulled up a photo of his house when he was a boy on google maps, and he told us all about it, including the address.  Then he want back to commenting on the "medium sized yellow flag" on the wall (not only does he read things, he'll tell you the shape and size too!).

We left a little worried about him being off, but hoped he'd perk up the next visit.  What happened the next day was completely unexpected, and I know it's something we'll never forget.  I got a call at work on Thursday saying my dad had a fall.  I remember thinking that's weird.  Dad is very stable and it's unlike him to be unsteady on his feet.  He's one that actually helps out with the other residents because he is strong and able.  Never having received a call like this in the past, I figured it was just part of their procedure and they were required to report this to me some time after the fact.  I assumed it had happened earlier in the day and they were getting around to the phone call now.  But then she said they were sending him to the ER, and the more she talked I realized he was still on the ground.  And he was not conscious.  I was trying to get a sense of should we take off work and rush there now?  I even remember asking her "I'm over an hour away, what should I do?" I felt like I was trying to think in slow motion.  I was caught off guard, and I couldn't form a coherent question to get the information I needed to know.  The last thing she said before hanging up was "I can't tell you what to do, but it looks pretty bad." 

I called my sister who was even further away than I was and we decided we would meet up and head there together.  In the meantime, the nurse called back and said they had gotten him in the ambulance and he had regained consciousness and was starting to respond.  We at least got to spend the drive feeling a little better about his condition.  I couldn't help worrying what this fall would do to his brain.  Would he be worse, much much faster?  Would he turn mean again?

When we got to the ER and took one look at him, it was heart-wrenching.  He looked like he got beat up.  His eye was purple and swollen shut.  There were cuts on his face and one side of his face was so swollen, his face was completely misshapen.  He was lying on his bed in a quiet room by himself.  Drumming his fingers on his (oversized!) stomach to some kind of made up beat.  I knew immediately it was a self-soothing mechanism and he was keeping himself calm.  He really didn't stop the entire time we were there.  But he did seem more at ease once he saw us and we put the T.V. on for him.  He thanked us for coming, and said he was glad we could come out (same as he would say when we come in for a visit).  And anytime we talked to a staff member and asked a question he would thank us for being there and thank us for asking.  It felt like he was a child, and he really didn't understand what was going on. The CAT Scan came back normal, but he had an orbital blow out fracture under his eye, and the sinus cavity was filled with blood.  They said to make sure he didn't blow his nose or anything, which would be hard because he still seemed to be coming down with something and he had a horrible cough. Within 4 hours he was being sent back to the nursing home.

We met him back at the nursing home and when we saw some of the nurses come up to us, it really hit me how serious this was.  They were really shaken.  One nurse said she didn't think he'd be back.  When she heard the fall from a distance, and then saw what happened, she thought he was gone.  She said he was walking out of the dining room with his magazines and then he had a bad coughing spell.  He lost his balance, fell and crushed his face into the wall, and then hit the ground.  From a distance she said it sounded like someone threw a coconut against the wall. And then he was unconscious. 

Once we saw he was settled in a recliner and had eaten some lunch, we headed home.  He seemed more confused than usual, but he had been through a lot and he needed rest.  We left feeling very thankful, considering how things could have turned out.  We're also thankful that the staff is just as concerned about him as we are.

But then Thursday evening around 10:00 I got a call that my dad now had a temperature of 102 and it wasn't responding to meds.  They wanted my consent to send him back to the ER.  Of course I agreed, and then I had to wait.  All I could think was they must have missed something, and some infection was spreading now.  I called the ER and left a message for them to call with an update as soon as they could.  They called back at 12:30 and said he has pneumonia.  They were running several courses of IV antibiotics and they would be sending him back in a couple hours when they were done.  I could picture him, how tired and exhausted he must be by this point, and how he'd be dragged back in the middle of the night.  I asked how he was, if he seemed anxious about being there.  She said no, actually he's just drumming his fingers on his belly and he seems very calm.  Again made me think of him as a small child being alone, and I felt terrible we couldn't be there.

Over the past couple days he seems to be doing much better.  No more fever, the cough is getting better, and his face looks much better.  Still very black and blue, but the swelling is much better.  He has a face shape again.  I saw him yesterday and I should be relieved at how well he looks considering everything he's been through.  But I can't help but think how this is going to escalate things?  He is much more subdued, and seems more confused than I've seen.  He's been on a lot of different medications, he is sick, and had a horrible trauma to the face/head.  So it is understandable.  I just hope he can bounce back a little from this.

If we only knew then...

As you may have noticed, this blog is out of order.  So our random thoughts and posts are in order of when we wrote them, but not in sequential order of how they happened.  So it may be hard to follow.  But at this point we just wanted to get our thoughts down.  In the near future, we hope to switch to a new format that will help us put things back in order, so it will make a little more sense for someone that may stumble upon it.

But now that we've finally come full circle with explaining the process from pre-diagnosis to now, I thought I'd include some things that happened during the years long before the diagnosis.  Clearly related to the disease, but at the time we had no clue.  I hate how the word "dementia' is part of the FTD name.  It's so misleading and people don't really understand how it's different from other forms.  Near the end, yes they are all very similar.  The confusion, memory issues, incontinence, immobility, the refusal of food...but the beginning is so very different.  Different than most diseases people have seen.

I'd say a big turning point was in 2001, around the time of 9/11.  It seemed to be the start of a big depression for him.  It was gradual, and we eventually got to the point where he wanted nothing to do with anyone.  Particularly my mom's family. The sweetest, most caring and kind people you will ever know...and now he held an irrational grudge over them.  He wouldn't let them over the house for holiday or family dinners, and he wouldn't attend when we would move the event to another household.  And since he went back and forth between the silent treatment and insane and crazy outbursts & rage, no one wanted to confront him.  We tried to pretend everything was normal.  How ridiculous is that?  But he was not someone you ever wanted to start a confrontation with, especially with the way he was now.

During the holiday season of 2003 (a full 10 years before diagnosis), we started prepping him that I would be hosting Thanksgiving that year and that we really wanted him to come.  I don't think we got through to him.  But he ended up coming.  It was awkward, and we all tried to make polite conversation with him.  He left the room and sat in the kitchen alone, and was silent the rest of the night.  So we left him alone.

After he had left, we found a book left in our bathroom.  It was a new sports/reference type book.  On the inside cover it was addressed to my husband, and signed "your bud" with my dad's name.  Talk about unusual.  I didn't think my dad even knew how to shop.  My mom took care of all of that, and I don't think giving gifts was really on my dad's mind.  It was always just handled and he was just always too busy.  So this was just weird.  And a very unusual and personal thing coming from him.  To give some background, my dad always felt close to my husband.  My husband is a person that can talk to anyone and make them feel comfortable.  They had a lot of the same views, and he was easy to talk to.  Even when he shut everyone else out, he didn't seem to do it to him.  So this seemed like a weird cry for help.

A few weeks later we received a card in the mail.  It had no return address and it was addressed to my husband.  The writing on the envelope was chilling.  It looked like something from a psychopath/serial killer.  Like when you cut letters out of a magazine and they're all different sizes and fonts?  But this was hand written to look that way.  It was even whited out in sections, and re-written on top.  The card on the inside said "Christmas is a time for being with family"  and it was not signed. 

I was kind of terrified for awhile.  But the more we put things together and researched the handwriting, we're certain it came from my dad.  If you've seen from prior posts, he was meticulous.  He would never white-out on a card and then send it anyway.  His writing was even and perfect, as if he used a ruler all the time.  This was so unlike him, and obviously disguised on purpose.  Another cry for help.

But it's hard to help someone that made things so hard and refused us when we tried reaching out, any time we tried.  Little did we know you just can't get through when it's a sickness like this.  His brain was already changing, at least a full 10 years before we finally figured out why.

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?

Update 10/16/15: Noticeable Behavior Changes

It's been a really long time since we've been able to write.  Luckily things have been pretty steady over the summer, and not much to report.  Until this week.  He seems to be going through a decline.  Luckily he is still very upbeat and happy to see us.  Conversation is normal.  But he seems to need a lot more redirection and reminders of what he is supposed to be doing.

We got a call earlier in the week from a staff member wondering if we've seen any of these behaviors.  I hadn't noticed anything our last visit, so I asked for examples.  She said things like looking at his shadow box over and over and over.  Going into another patient's room constantly and needing reminders that he's not supposed to be in there.  Even using that patient's bathroom instead of his own.  She informed me that he went into the bathroom and wouldn't get out for an hour.  And that it sometimes takes him an hour to arrive in the dining hall for a meal.  I was a little surprised and upset.  1) Some of these behaviors sounded pretty typical of him.  And with a quick reminder, he would be on his way.  I immediately wondered if this person was new and didn't understand that he might need extra prodding.  And that even though he appears young and fully functional, not to let that fool her.  2) I was upset to hear that he was locked in a bathroom for an hour or practically missed a meal.  The staff should be on top of that and not allow those things to happen.

So I went for a visit today.  Sure enough as I walked down the hall, I could see him outside by his room looking at the wall where his shadow box was hanging.  He was pointing out each photo and taking it in, in his OCD ritualistic way.  When he saw me coming he started beaming and said he was so glad I came today.  Then he went on to show me the shadow box as he usually does and wanted to know if I made it, as he usually asks.  I spent a lot of time on it, hoping he would like it and worrying if I was including the right things, or anything that might upset him.  I'm so glad to see that he finds comfort in looking at it.

So we went off to shoot pool.  He still seemed ok to me, but as the game progressed I noticed it was hard to get him to get up and take his turn.  He kept repeating what he was going to do "first I'm going to go to the bathroom, then I'll stop and get some coffee on the way back, and then I'll take my turn.  Unless you want to get me my coffee while I'm in the bathroom?"  I'd say sure, dad.  I'll get it for you when you get up.  Then he would just sit and light up another cigarette and repeat the whole thing 2 minutes later.  This went on for about 40 minutes.  Our typical re-directing wasn't doing a thing anymore.  And I'm not sure how to handle it.  I don't want to embarrass him, so we just sit and try to prod him along, but not make a big deal out of it or push too hard.  But he doesn't seem upset or bothered, so we let it go.  He did eventually finish his game and we were able to get him back in time for lunch.  But I just knew this was worse than we've seen and I realized I was seeing what the staff member who called me about it was seeing

He cooperated walking back like any other time.  He went back to his room to wash up for lunch.  He sat on his bed and started repeating how first he was going to comb his hair, then he was going to wash his hands, and then he was going to go to lunch.  After several minutes of this I realized he was stuck in a cycle again.  He just kept repeating what he was going to do, and then he would sit.  I tried offering to help him up to break the cycle, but he said no he could get up.  We tried turning the faucet on to get him to wash his hands, but that didn't help.  After about 20 minutes he asked if I could help him up and reached out his hand to me.  So I pulled him up and he was back on track. 

Watching someone stuck in the middle of an OCD ritual is just so hard and uncomfortable to watch.  He started talking about the wood grain in the laminate floor and how it ran perpendicular to the door and was following it with his finger.  Like it's another routine we don't normally witness.  Like it's something he needs to do before he gets up off the bed.  Before he started washing his hands, he had to first comb his hair and then he started pulling paper towels out of the dispenser and counting them aloud.  He needed 5 before he could proceed.

Now I completely understand what this nurse was talking about. If you're on a floor working with 30 other patients, you can't sit through these rituals and then drag him to lunch.  In the past all they had to do was come back and check on him every few minutes and remind him to come for a meal.  But now he needs more assistance than that. 

I do hope they realize that he is not being defiant or purposely being difficult.  He's not saying "no".  He agrees to everything he is asked to do.  But then he gets "stuck", and he can't follow through.  I remember reading about FTD, or maybe even dementia patients in general, and how they will start to have trouble completing a task that takes multiple steps.  They get stuck after the first step or thought.  I don't even think it's a matter of forgetting what they were going to do.  I think the brain just loses the signal of how to get from point A to point B.  This is going to get harder and harder to watch.

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.