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.

Update - Quarterly Assessment Visit

It's been awhile since I've updated.  Luckily there is not a whole lot that has changed.  I met with the nursing home staff today for our quarterly assessment and he is still upbeat, easy going and active.  There is some new staff, so I'm adjusting to that, trying to sense how well they know him and understand his issues. 

The new head nurse read from the report the last nurse took before they left.  It was more detailed and thorough than I was used to hearing.  Maybe it was just her approach.  And she didn't have a lot to offer since it wasn't her report and she doesn't know him well yet.  But she mentioned that he is "still" on a bathroom schedule since he has had some incontinence and bowel incontinence issues.  That certainly got my attention.  Reading about FTD, the 2 biggest signs of an impending decline, and maybe a sign of the later stages of the disease, are incontinence and refusal to eat.  Luckily his appetite is still great.  But I was a little surprised and upset to hear this.  She spoke as if getting him on this schedule to remind him more frequently to go might help him improve.  I wanted to say that I knew what this was a sign of with the disease, and he wasn't going to "improve".  But I kept my mouth shut.

The activities coordinator is also new.  A male this time around, which actually may be better for him.  He seems like he may have been a vet himself, and that he does things that seem more "normal" to me.  He said my dad participates in activities daily.  I pictured the toddler-style music classes we witnessed in the past.  But when I asked what they do, he said he participates in the trivia and conversations.  He takes him outside every day - sometimes for walks, sometimes in the court yard just to sit.  He even said he considered taking him out to shoot pool and wondered if he'd like that.  I said he would love it!  When I was out with my dad later I even saw him outside pushing one of the other vets around for a walk.  So that was a good sign.  Maybe he can relate better to the vets and be more on their level.

They also said they had him on a watch period for a week in May to see if there were any issues: showering, behaviors, diet, incontinence, staying completely dressed, etc, etc.  And they said there were no issues and he passed everything.  He still gets annoyed with some of the other residents' behaviors, but he handles it well.  When I asked if he still spends a lot of time on his puzzle books, they all agreed that he spends a lot more time out of his room doing other things and socializing than he used to.  So he doesn't appear to work on them as much.  Looks like he has found a new routine for now.

After the meeting I took him out to shoot pool and ordered some sandwiches for lunch.  As usual, he kicked my butt.  He does repeat his routine a lot more than he used to.  I don't know if it's a forgetful/short-term memory thing or an OCD/comfort thing.  And he told me he was going to use the restroom about 30 times before he actually went.  That's going to make me nervous now that I know about the incontinence thing.  I hope we have more time before that gets worse.  He also seemed to keep forgetting that my husband was at work and my sister wasn't able to come.  He kept wondering when they were going to get there and I had to keep reminding them that they couldn't make it today.  It's sad, but the visits are still uplifting because he enjoys them and is generally just happy to be out.  So, as always after a visit, I'm exhausted but so happy I went.

Scheduled Neuropsych visit - 9/16/13

This was a crazy day.  My dad's business taxes were due for a business whose financial records were a mess.  I spent a lot of time trying to piece together what I could, trying to make sense of what little information he had by matching it up to his bank records.  I had to call in a favor to the woman from his bank who was in on this situation.  She would often call and warn us when X would come in with my dad to withdrawal money.  She was able to help piece together his check records and helped me discover that he continued to write himself paychecks every month.  Sometimes several times a month.  In his mind, that was how he got paid.  It didn't matter that he didn't have money in the bank to actually cash the check.  And did his business ever deposit the payroll taxes from these checks?  Of course not!  Which is where the countless tax notices from various organizations stemmed from.  Month after month after month...

 

So I needed to finish the tax return as best I could so my dad could sign it.  The other problem was my dad's doctor appointment was in the middle of the day.  He does much better with his morning appointments because he is always home when we come to get him (by surprise, never a warning so X doesn't find out about it and make him change his mind!).  From 11:00 on we never knew when we could catch him because he would start walking the neighborhood - his daily routine.  Sometimes X would pick him up (in his car she kept).  But we had no choice, we had to take the appointment we could get and hope we could get him there.  It was always very stressful, with a lot of worrying the night before about whether or not we would actually make it to the appointment with him.  This day, we decided to have my sister go get him early and bring him to my house so we would know where he would be.  We were worried about keeping him occupied for that many hours.  We figured he'd get antsy, would keep asking for beer, and just wouldn't be able to contain himself in my house.  But it was the best option we had. 

 

Well, this was our plan.  But here is an email from that day I wrote to my uncle that explains what actually happened...

 

Just wanted to let you know my dad's appointment did not happen today.  My sister took the day off work and picked him up this morning while I finished up his business taxes that were due today.  I also made an outline of what I wanted this therapist to know.  I decided to call the VA this morning to make sure we were going to the right location, which is when I found out the appointment had been cancelled, the doctor called in sick.  This was about 30 seconds before my sister pulled into my driveway with my dad.  Needless to say I'm beyond frustrated with this process and the pace things are moving.  So all we accomplished today was getting my dad out of the house (which seemed to be good to him), we got his taxes signed and filed, and I got a new mail forwarding address form from the post office signed by him so I can get his mail. 

We did discover some interesting pieces of information though.  He still has those "visitors" at his house.  They appear to be living there in his spare room. 2 young, young females, though we swear one looks like a young boy.  He insists they're two women.  "X set this" up he says.  He said that a couple weeks ago too - she set this up to happen once his utilities were back on.  So now we're thinking they are living there and paying rent to X!

He also said that cigarettes are so expensive and that for the last year or so X has been rolling cigarettes for him - or someone she knows has been doing it.  The last year is when his behavior has taken a turn for the worst, so I'd really love to see if these cigarettes are laced with anything.  He didn't have any left and had regular ones today, but we will keep an eye out for any chance to get ahold of one.

He still seems slow and spacey, and forgetful, and just backwards in public.  I really hope we can get a correct diagnosis soon.  I left a message to reschedule this appointment.  So far they said he's not available again until 10/23!!!, so I'm going to see what I can do to try to get him in sooner.  I'll keep you posted.

 

I can't even describe the planning and stress that goes into getting him to an appointment, and then the feeling of absolute disappointment when it doesn't work out.  The scheduling at the VA is completely absurd when it comes to emergency situations.  Six weeks is the standard wait for each and every appointment.  So we felt total defeat after this day.

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...

8/3/14 Visit

It was the first time that everyone was busy with things going on, so I went to see dad by myself. For many families, one-on-one is usually no big deal, but for us it's always been awkward.  What were we to talk about? I haven't had a real dialogue with dad in decades, maybe, ever.  So that was part one of my fear, but part two is and always will be what if something changes in his demeanor or behavior that I can't handle on my own?  We worry about changes in his brain that we know might be coming soon, but we just don't know when.  The day he takes a fall because his legs are too tired.  The day where something might set him off or he might be angry.  The day where he wants to leave the facility to go "home."

So far, so good.  He is still in good spirits and happy to see visitors.  Or in this case, visitor.  I think...

He gave his usual chuckle and smile when they let me into the dementia unit to see him.  I said, "it's just me today!" And, because FTD has stripped him of a filter, the first thing he said was, "I like it better when Brett, Mark, and Rick come so we can shoot pool."  I know not to take this personally and joked, "well one person visiting is better than no persons and I can shoot pool with you."  He agreed, and then said, "and I can get some cigarettes out of the deal." Sigh...he's happy to see me even if he doesn't always know how to express it. 

I wondered how the visit would go but it was the usual routine of taking the same route to the member's lounge to shoot some pool, pointing out things along the way, and talking about the day's agenda, which is usually the same thing each time.  Get some coffee, shoot pool, dad gets to smoke, and repeat until it's been a couple hours and it gets close to a meal time. Then we usually stop outside, out front of the building so he can have one more smoke. Sometimes we stop and look at the birds in the lobby before heading back to the unit. 

Since it was just the two of us, I played pool the entire time.  He still shoots well and I'm still pretty lousy, but I did make a few good shots.  Dad's pretty tuned into numbers all the time, so I think he really enjoys calling all the shots, not only for himself but anyone who plays with him.  "Eleven ball in the corner pocket?" Most of the time I don't know what I'm doing so I go along with his suggestions.  On some of the tricky shots, he'd tell me to bank it off the rail or off another ball, and to my surprise, I actually sank a few that way!  But most of the time, according to him, Denise and I "tend to rearrange the balls on the table more than anything else."  Guess we need to work on our game!  Although once in a while, he'd accidentally hit one of my balls in and I'd give an enthusiastic "THANKS!" and he'd laugh. 

At one point when we were heading back to the unit, we talked about upcoming visits. I told him there was a picnic coming up for the veterans on the 20th that we were hoping to take him to.  It would be a rare weekday visit, which will be nice.  At that point, he checked his phone to see what the current date was and said, "It's the 3rd. It was your mother's birthday yesterday." I was shocked.  Sometimes he loses track of dates - you just never know what you'll get with this disease. He doesn't say anything more about it and we move on.

As he was having his last cigarette outside, I told him I'd have to get going soon because I needed to run 13 miles when I got home. "Thirteen miles?!" I explained that I was training for my first marathon.  He asked, "how did you get started with all this marathon running? Was it Denise?"  In that brief moment, we had an actual conversation about something. It was nice, but it was fleeting, and he soon he was back to reminding me of the routine.

"So when we go back, you'll sign me back in...and turn in the cigarettes...and stop by my room with snacks...and I'll wash my hands and go eat supper?"  3x or so.

Oh, and we stopped to look at the birds, too. 

I have to say, visiting dad solo wasn't so bad.  We had some nice conversations.

7/27/14 Visit

It started off like any other visit.  Whoever is available to visit dad will carpool or meet at the VA and enter the main entrance where we sign in and fill out nametags for ourselves. As we walked down the ramp to the reception area, we realized we were walking in on a situation. It took a brief moment to realize it was a deceased body on a gurney, surrounded by what seemed to be family members. They were all quiet while a staffer folded up an American flag and presented it to them. I suppose this sort of thing happens all the time, but it was the first time we witnessed it.  I heard my niece quietly ask, "did that person die?" and it all felt so real.  This is probably the last place most of these veterans will ever know. This could be us one day. It was comforting that this veteran obviously had family when I'll bet not everyone there does. I was glad we were all there for dad.

After we checked in, dad was in his usual chair in his unit waiting area, jacket on, ready to go.  I wonder if he wears that jacket every single day. I wonder if he sits there waiting for us every day as well.  He still seems to have a good understanding of weekdays vs weekends, so that's a small comfort. He greeted us with his usual laugh and smile and instantly asked about the usual routine of if we brought him some cigarettes and that he's just dying to play some pool.

Some days he's really good, this particular day as well.  It's hard because I'll sometimes wonder why he's there and then he'll get into one of his OCD modes and it soon becomes apparent we made the right decision.  It's just a shame he can't get out more but it makes our visits that much more special.  He didn't stop and point out as much this time and it's almost funny because we come to expect the same comments each time - stopping to look at photos of the newest residents on the wall, stopping to look at the recently deceased list of residents, complete with his commentary of "I hope I never see myself on there, but then again, I won't be around to see it.", etc.  He'll point out some of the posters and art and funny signs too about "hot beer, lousy service" that he gets a kick out of, and when this doesn't happen, we almost miss it!  I've even pointed things out to him because I was expecting his commentary.  I guess this shows we will never tire of this and will cherish the repetition and his tour guide ways for as long as possible. 

Dad still shoots pool very well and jokes about the butt-kicking he'll be unleashing on any of us who try to play.  He played several games with my brother-in-law, while my sister and I played with the kids. Then I noticed something that took me back in time.  Before the diagnosis, dad went through a phase where he hardly noticed or acknowledged the kids.  He seems a little better now but when I watched him walk past my nephew and pat him on the head, it reminded me of dad from a long time ago - his way of letting you know he sees you.  It was cute and made him seem normal again. 

But it doesn't take long to realize he's there for good reason and no matter how busy we all are, it always ends up being a nice visit and good time.  It gets dad out and moving around and helps him interact more.  There are a couple weekday visits coming up soon.  First, there is a picnic for the veterans that we just missed out on in July, so we are going to take him to the August one.  And the following week is his next quarterly assessment.  Last quarter we got a pretty good report on him, so we're hoping for the same this time.  We will hang on to these while we can. 

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.

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.

 

 

One week

Dad made it through one week before being moved to another room.  We were told he was on a wait list to move from a quad to a semi-private room.  But this wasn't that.  He was being moved to the dementia wing - lockdown.  We always knew he'd end up there at some point, but not this soon.  He's 64 and completely mobile and that seemed to be the trouble. 

From the moment we dropped him off, he seemed like a kid in a candy shop, exploring every square inch of the facility within the first two days.  Always on the go, which we thought was a great thing.  He was finding interests and things that he enjoys like shooting pool and also found the designated smoking areas without too much trouble.  We felt confident that by setting him up on a routine where he has to ask the nurse's station for his cigarettes, it would prevent him from just lighting up whenever and wherever he wanted.  It was working well. 

It was when I called him the next morning after dropping him off that we learned something odd.  At first he told me just how much he was liking it there and that he's been playing pool and met other veterans. It really warmed my heart that he was enjoying himself and wasn't asking when he was going home.  But then he said that some guy told him they started serving beer around 1:00 p.m. and he was looking forward to getting a couple.  We learned the hard way that he can no longer handle alcohol with his brain being the way it is.  My husband and I had to carry him into his house around Christmas and he was in such bad shape, I prayed he didn't die that night on the couch.  We had been vigilant in keeping him away from his beer ever since. 

I thought that can't be right.  They can't have a bar on the facility, can they?! I let it go, thinking it might have been one delusional resident leading another.  I ran it past other family members and even a few coworkers and they all thought it wasn't worth stressing over because how could a nursing home facility serve alcohol when they've got residents on all sorts of medications or with issues that would not be able to handle drinking?

The next day, my sister took a turn to call him and she said he sounded off. Her gut instincts told her something was not right.  As they talked, he again brought up the beer, telling her he had a couple while shooting pool.  We think he only had a few bucks on him and probably couldn't get many, but that wasn't the point.  He now knew  where the beer was.  He found it on the very first day there and with his OCD tendencies, it would become a regular stop in his day.  And with his FTD, unable to know when to stop drinking it.

Calls were instantly made to the social worker and nursing staff where it was confirmed that they have a veteran's hall which serves beer six days a week for EIGHT hours a day!  The challenge is they have a section with dormitories for residents who can live independently, and could likely handle a few beers.  But there's no stopping anyone from the nursing home side from going there, too.  I suspect this may not be a huge problem because most of the nursing home veterans are well into their eighties, in a wheelchair, some missing a leg.  Not exactly the same as our mobile and swift, young dad. 

So they put him on a "do not serve" list and told us they have police who can look out after him.  We didn't exactly want him to feel punished and threatened while trying to hang out in a part of the facility that he actually enjoys.  It was a mess.  We decided to go see him a couple days later on the weekend to scope it out for ourselves.  We found that we had to really deter him and distract him about not having beer, but the nice thing about his current personality is that he's so agreeable.  He never puts up a fight about us telling him when he can't do something. So maybe this wouldn't be so bad afterall?  Maybe as long as a staff member tells him no, he'll agree and forget about it?  We saw how much he enjoyed walking around and playing pool that we just didn't have the heart to have him banned from that particular building. 

The next day we got a call that they had to put him on a one on one order where someone had to "babysit" him all day and that he's hardly slept, if at all, for the last four days.  Well, it's no wonder he's becoming unmanagable.  He needs sleep!  Turns out that the OCD tendencies were really ramped up and he started pestering many of the veterans for beer, cigarettes, or money to buy both.  He started wandering into areas that he didn't belong, and even lit up inside an area clearly marked "no smoking".  We could tell that he seemed tired and when he is, his judgement is worse and he gets more forgetful.  We were starting to feel like none of the staff seemed to want to understand this disease and that it's not your general dementia.  Why couldn't they simply suggest to him to go sleep? 

We continued to check in on him every day, with each of us taking a turn calling his cell to see how he sounded and to remind him of what he should and shouldn't be doing.  We also checked in with the nurses to see if they had anything more to report and to relay our suggestions on what works for us when managing his mind.  A few days later he was moved to lockdown. It absolutely broke our hearts.

If we thought he was the youngest veteran before, he certainly was going to be now.  It killed us to think about how he had a week of absolute freedom to do what he wanted and was now being reduced to a couple hallways, his room that he's sharing with the oldest resident there, and has to have a staff member at his side for every activity he would like to do, including smoking.  I think they even have to light the damn cigarette for him, too.  The walks he enjoyed, the pool table, the coffee club - all gone. 

After a few lengthy conversations with heads of nursing and a new social worker for his new wing, we began to accept their decision. It was getting to the point that they feared for his safety as the more he pestered residents the more angry they were getting and were beginning to threaten him with physical force.  It angered us that it was so unfair that the residents with most freedom, who could actually live on their own, don't have a clue about this disease, but we certainly didn't want the next phone call telling us that dad was severely injured by one of them, either. 

So they will take good care of him there and they have the staff best equipped to handle dementia care.  That wing has more staff per resident and more doctors than the other section, so we have to realize he's in good hands.  They said they will do some cognitive therapy and see if he improves and see if maybe he settles in more and that the zoloft he was given would calm the OCD tendencies down.  We've learned that he's finally getting some sleep and we hope that maybe he could move back to the nursing home side, but we won't hold our breath.