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.

Getting Caught Up...

It’s been a long time since I’ve posted.  I’ve had thoughts over the past few months of what I wanted to write about so we wouldn’t forget later on.  But things just got too busy, and it got harder and harder to get back here.  I realized with my visit this past week that things have kind of come full circle since I last posted.  So that helped me come on here to get back on track.

Back in the Fall I started visiting my dad on my own for a short weekday visit while everyone else was at work and my kids were at school.  I was nervous about it at first.  I figured it would be awkward and I wouldn’t know what to talk about.  Plus I was afraid if he was having a bad day and hard to re-direct, that maybe I wouldn’t be able to get him back by myself.  He’s still my dad and I’m still the kid, so I find it hard being the one in charge.  If he tells me he wants to stay and shoot another game even when it’s time to leave, or that he wants me to get him his 1000^th cup of coffee, it’s hard for me to say no!  But it turns out I really enjoyed these visits.  He was so happy to see me and appreciative to get out and play pool.  Even though I’m really really bad.  He always helped tell me what I should shoot and was conversational about family and things.  He seemed genuinely interested.  Complete turnaround from before the disease.  I found myself looking forward to these one on one visits.  I’m grateful that we were able to figure this disease out when we did, or we’d never have this time to come to terms with everything.

These visits came to an abrupt halt when there was a flu epidemic running through his unit before Christmas.  He ended up getting it, but from my phone calls to the staff it sounded like he was fine and handled it well.  We still waited 3-4 weeks to get back there because it was spreading through the facility.  They even had to postpone the holiday party for families.  When we went back, he was a different person.  We had read that an illness can cause a setback.  That it takes so much energy to heal and get well, that everything else suffers – they are more confused and appear worse-off with the dementia.  It’s unclear if these setbacks are temporary or permanent. 

He definitely had a setback.  He was very tired, didn’t really light up when seeing us, was more confused and very hard to get moving.  He’d get “stuck” when he was supposed to do something like take his turn.  He’d say ok, but then continue to just sit.  His cough was horrible and his appetite seemed weak.  The snacks he usually goes through in less than a week were still there from our previous visits.  It was sad and scary that maybe the visits we looked forward to, were now going to change.  When it was time to leave, he was very hard to get back.  He was just “stuck”. 

After Christmas we visited and brought him a tablet.  We put a few games on it, hoping it would give him something else to do.  We also set up an email account, but figured that might be something more advanced he might not be able to handle.  It turns out it just wasn’t something he was able to connect with.  I really think if we had given it to him before he got the flu, he may have been able to handle it.  But not after the recent setback.  These last couple visits were more sad and depressing.  But it was encouraging that he did seem a little improved each time.

I called to speak to the social worker to see if they’d noticed the decline and if they could tell us anything more.  They had basically seen what we had, but kept saying it was normal.  She also said that sometimes he gets confused and will come out not completely dressed, and that morning at breakfast he showed up without his pants on.  She said it was no big deal, that it’s very normal with the disease.  They just re-directed him back to his room and helped him get dressed.  I get that it is “normal”, but it’s not normal for him.  To me it’s another regression.  And he’s 65, not 85.  So it’s really hard to hear.

 

Now it’s been about 2 months since he was sick.  And I think it’s safe to say he has turned the corner and bounced back.  Yes he is still a little more confused, and I think in general the disease is still slowly progressing.  But I went for a solo visit again this week and he was great.  So happy and upbeat, he kept thanking me for coming and he didn’t act tired or “scary”.  It was such a huge relief.  Because seeing him the way he was before was just hard.  I know he’s going to get worse, but we hope we can have more time with him before that happens.

There have been some changes in the past few weeks.  The activities coordinator from his unit retired, so they hired someone new.  I’ve heard that she is really good and has been getting the guys involved in different things.  When I got there this week, all the guys were in the dining hall finishing up the personal pizzas she had helped them make.  It looked so fun and seemed like a really good idea.  I’m interested to hear more about what she does with them.  Especially as the weather gets nicer and they can go outside again.

My dad also had the opportunity to move into a single room.  I wasn’t sure if he would want to because he’s so set on his routine.  But he ended up making the switch, and we are all so happy with it.  Now we can bring some more personal things for him to hang up.  He has a nice view of the courtyard and was already commenting on certain people he sees out there regularly.  So it seems he already has a new routine and is doing well with the move.

 

So a couple things to note from my visit this week…after I pulled him out of the lunch room, we got his pool stick and started to head out.  He got sidetracked by the big screen tv because Dr. Oz was on and he really likes that show now.  I remember him saying that in the Fall, so I guess it’s part of his daily routine to watch Dr. Oz now.  I like to hear these little tidbits about his day.  It helps to know he’s doing something and has things to look forward to.

It was hard to get him on task when it was time to leave.  I can’t even explain why it’s so hard.  It just is.  It takes a lot of re-directing and being firm.  Then, once you think he gets it and is ready to comply, he’ll ask again “so do you want to shoot one more game?” And then you have to explain again how he’s going to be late for lunch.  And he’ll say ok, and then sit down and crack open a can of pop and light up a cigarette…I finally got him to agree to come by talking him into getting a coffee on the walk back.  

Once we finally got going he stopped by the tv again to watch a St. Jude commercial.  They were showing kids with cancer and it was hard for me to watch.  I didn’t expect it to phase him.  After all, the emotional feeling is supposed to be long gone with FTD.  But he stopped to watch and commented how hard it is to see those kids like that.  I was surprised, and almost wanted to change the subject before he ruined the moment and said something inappropriate to follow it up.  But it seemed genuine so I’ll take it. 

 

Then that was ruined on the walk back as we passed a large woman riding a floor cleaner.  She stopped to let us pass, smiled and said hi.  As we passed dad was like “Wow.  That woman is almost as big as that floor machine!” I pray she did not hear.  From an outsider it would be almost comical, because he’s not looking too slim himself these days.  Not to mention, he was wearing a sweatshirt that didn’t quite cover his belly.  But that’s the disease.  We stopped for his coffee and as we continued to walk, I stopped to check the time and bumped into him, spilling his coffee over his hand and arm.  I felt so bad.  But he didn’t even flinch and didn’t mind at all.  The coffee was fresh from the pot 2 minutes ago.  I guess it’s really true that he just does not feel temperature the same anymore. 

When we finally got back to his room I told him I wanted to clean it up a bit while he went to lunch.  It’s always hard to get him to just leave as I’m still there.  I started stacking up magazines that he’d been hoarding so I could take them home and get rid of them.  The one I pulled out on top had Elle MacPherson on the cover.  He saw it and was like “WOAH!  Who is that????”  all googly-eyed like a 13 year old boy.  So that’s always fun to hear from your dad.  Again, distraction, it’s all you can do. 

 

Then I discovered a note pad on his desk with some things written on it.  I saw he had some tv shows with times and channels written on it.  Dr. Oz, The Big Bang Theory…and then my heart sunk.  At the bottom of the pad was the phone number of that “woman”.  The one who took advantage of him and got ahold of all his money…the one who had tried calling the facility a couple times to speak to him.  I have no idea where this number came from.  I tried to sneak through his phone real quick to check the call log, but didn’t have a lot of time at this point.  I didn’t want to keep him from lunch.  I didn’t want to come out and ask him and remind him of her.  So I tore the number off and took it with me.  I’m completely baffled because he doesn’t know his cell number, so she couldn’t have called him on it.  If she called at the front desk, we’re supposed to be notified.  And I don’t see him remembering her number long enough to go back to his room and write it down.  So we’ve got some investigating to do…

 

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.

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. 

Father's Day visit

It was our first Father's Day visiting Dad in the VA home, and in some ways, it was probably the easiest planning we've had in the last several years.  It used to be difficult deciding if we should host him or take him out somewhere when he'd seem to be antsy and uncomfortable doing either.  But that was before we knew his diagnosis. 

We all went out to see him, with the plan of having a picnic lunch brought in so we could try and eat outside.  He's very much into a routine when we visit, so it would be interesting to see if he'd let us change things up on him.  As it was getting pretty close to noon and we didn't want the staff to have Dad already seated for lunch, I decided to give them a quick call to let them know we were close by and should be there in just a few minutes.  We're not sure if he really knew if it was Father's Day or not, but the nurse said that he will be so thrilled and that he'd been checking the calendar and the pacing the lobby waiting for us. When we got to his unit to be buzzed in, there was another lady waiting outside as well.  She was there to visit her dad and we got to talking with her.  Sure enough, there was Dad on the other side of the glass, and since he can't let us in without the aid of a staff member, he cupped his hands to his mouth to shout through the window that he'll go get someone to let us in. It's so bittersweet.

The lady waiting with us asked if that guy worked there.  We said, "no, that's our dad." She was shocked and couldn't believe how young he was.  He gets that a lot.  People often think he's a staff member and not a resident, especially in the lock-down wing where he's easily 20 years younger than most. 

We signed Dad out to go shoot pool with him, which is a big part of his routine with us.  He always gives a little smile and a laugh when he sees us, and that's something we cherish while we still can. You just never know how long that will last with FTD.  Once we leave the wing, it's the usual routine of pointing out artwork and photos on the walls as we walk.  He'll tell us step-by-step how we will get to the member's lounge to shoot pool, even though we can all probably get there with our eyes closed now. We let him talk and do his thing.  He always thanks us for bringing him things to eat and drink and really enjoys getting to shoot pool. 

While the guys played pool, I enjoyed the outdoors with my sister and niece and nephew and we called for lunch to be delivered.  We were afraid that Dad would be stuck in his routine and want to get lunch at the dining hall, but it only took a little bit of coaxing to have him sit outside on a beautiful day with us. After we ate, he seemed anxious to check out the museum - another usual stop on his itinerary when we visit. But we wanted to give him our gifts first. 

We pulled together a nice gift to compliment his crossword puzzle hobby - a magnifying light, a desk light to work from, some more puzzle books, and his favorite cereal bars that he likes to snack on.  We also decided to make him a new Army scrapbook.  He had a book that my mom made years ago with all the photos and memorabilia that he'd send home from Vietnam. Over the years, the book started falling apart and many of the photos came loose, so we thought this would be a fitting gift, especially now that he's in the VA home, where there really is a sense of pride and respect for those who served for our country. 

I think it came out pretty nice. 

 

 

 

 



We never know what he's thinking or if we'll trigger certain thoughts that might be difficult for him.  When we gave him his gifts, he went through them all pretty quickly but he did seem to like the book and took the time to go through it.  It's amazing how his short-term memory can be so off while his long-term is completely intact.  He pointed to some of the guys, remembering their names like it was just yesterday.  Overall, we didn't get a huge reaction out of him, but we weren't expecting that, either, because with FTD, emotions are usually pretty flat. I hope he continues to look through this book and shows other family when they visit. 

 

One small step at a time...

After discovering the state my dad and his house were in that first weekend, we needed a plan of attack.  Here is the first of many lists I started:

1)      Get electricity back on

2)      Go through bags of mail and business papers and random notes to get a sense of what might be going on and where everything stands financially

3)      Set up new bank account and try to limit access to it

4)      Set up medical appointments through the VA

5)      Schedule appointment with eldercare attorney

My uncle graciously said he would take care of no. 1 first thing Monday morning.  He also said once we had a doctor’s appointment set up, he would be happy to take him to the appointment.

So I started with 2.  I wish I had taken a picture of all the bags to show how bad it was.  But here's a sampling...

 



 

Yes, I even used empty beer cases to tote the papers home...

 

 

 It took about a week to sort through everything in piles from medical, personal finance, business, weird notes, bills (paid and unpaid), and random clubs and subscriptions he signed up for.  As I read through the notes and things he documented, it became clear real fast that there was a woman involved who was taking advantage of him and his situation.  We’ve met her before and had always been suspicious of her.  Now we were seeing firsthand the checks she wrote to herself.  Sometimes he signed them, sometimes she signed them.  The debt uncovered was mind boggling.    After the damage was assessed, I was able to gather what was needed to meet with the eldercare attorney we had recommended to us.  Little did I know what a painstaking process that would become. 

 

Here's the after...

The next step was to get him in for a diagnosis.  I honestly just thought it was depression, maybe mixed with alcohol.  I just figured he didn’t care anymore, and maybe he snapped somewhere along the way and had some sort of mental break.  I also believed the doctors would never be able to figure it out.  Especially at the VA, which was the only place he could afford to go.  I expected to get a clean bill of health that would leave us scratching our heads.  I honestly didn’t know where to begin.   I started with his primary care physician who speedily squeezed us in for 10/23…when I had called on 8/29.  Sorry, not good enough.  I called a VA social worker and left a 5 minute message on her voicemail, trying to explain a lifetime into a single message.  She called me back and got us in 9/3 to meet with her.  I also left a similar bumbling message for one of the neuropsychologists and scored an appointment for 9/16.  My uncle planned to take my dad to the 9/3 visit with the social worker.  I had no idea how to explain the behavior we were seeing.  How to portray the severity of the difference between the way my dad is now compared to how he used to be.  At an appointment that took place in front of my dad.  So I wrote up a 1 page summary for my uncle to take with him and hoped that maybe he could show the therapist in private.  Now we just had to figure out how we were going to get my dad to agree to go, and not let the woman taking advantage of him find out about it, so she couldn’t talk him out of it.

Concerns addressed and dad had some new visitors...

So we’ve had some concerns accumulating about my dad that we wanted to address with the social worker.  We were curious if his showering schedule has increased, or if he was continuing to say he didn’t think he needed one when approached by the staff.  The last time we met we had heard this was the only area of difficulty with him.  We suggested that instead of offering it as a suggestion, to approach it more matter of factly to him.  Don’t treat it like it’s an option and we were sure he would comply. 

We’ve also been a little concerned that his OCD has settled him into his one favorite outfit which includes his winter coat, that he wears zipped up indoors while he waits (daily, we assume) for someone to come visit for the day.  Since we aren’t able to go more often than once a week, it is difficult to picture.  But he seems ok with it.  It’s just his routine.   But now that winter is over, we would really like him to dress weather-appropriate so he doesn’t overheat.  Last time my sister visited, he was very itchy and kept asking her to scratch his back.  This is when she noticed his favorite shirt was not only long sleeved, but fleece lined.

 Cereal bars and crossword puzzles are his favorite requests these days.  Problem is, an entire box of cereal bars will be gone two days later.  If he was given more than one box, those boxes will be gone too.   We found the staff was buying him boxes of these bars during the week, which we are so appreciative of.  But unfortunately he can’t pace himself, so we needed to see if they could spread out the amount they are giving him.

He’s also still complaining about phantom leg pains, that seem to come and go or change legs with each visit.  He never seems to bring it up to the doctor, so when questioned if anything is bothering him he just says no.  Again, so nice that he is agreeable and not a complainer at all.  But we want to make sure they aren’t overlooking anything.  Sometimes he acts like it is very painful.  We can’t help but worry about the later phases of this disease which brings immobility, and we worry if this could be an early sign of what’s to come.

 And the last concern are the cracks in his hands – big deep splits and grooves.  They look horrible and like it’s more than just the cold or smoking.  We thought they would have improved since he doesn’t spend nearly as much time outside in the elements as he used to since he’s been there.  I wince when I take out my purell to use for me and he wants to use it too.  I can only imagine how bad it must burn.  But he doesn’t seem to notice.  Again, we wonder which signals in his brain are functioning, and which might not be.  Maybe it’s not signaling the pain.

 After speaking with the social worker about all these things I felt much better again.  I can’t say enough good things about the staff.  They are always so polite and respectful, and my dad seems really happy with them too.  It’s nice that he knows them all by name and he seems to have a few favorites.  She said they try to be respectful with the vets, but if there are areas we want to push, they will be more than willing to do what we ask.  She said they will just make sure the same outfit he wants to wear won’t be available that day or that they have out something more weather appropriate for him.  She said the showering has still been an issue.  I suggested that if they bribed him with cigarettes, that should do it.  Of course that is not how they typically handle situations by bribing their patients, but if that is what we suggest and we are ok with it, she said they will try it.  It seems like the simplest and least confrontational way to me.  I think if it is just approached more often, it will become a part of his routine – which he is all about.  She mentioned that she will cut back on the cereal bars, since his family is bringing them weekly anyway.  And pretty much anytime he wants a snack, all he has to do is ask.  She checked out his hands and thought it might be the soap they are using, so they ordered some antibiotic cream for him.

I love hearing the little day to day stories when talking to her.  She said he often stops in her office to talk to her.  And he’ll of course ask what snacks she has that day.  So she’ll give him things like carrot sticks, or an orange – which I can’t imagine him actually eating!  But she said that he does.  She said to keep him busy she’ll sometimes give him little tasks to do, like to go and check out the Indians game on t.v. and report back to her on what is happening.  She said she sometimes forgets his illness, because he seems so normal and competent with his ability to do these things.  But like all of us, there are other things that bring us right back to reality.

We went for a visit this weekend, and I noticed that he was dressed in a different outfit and he wasn’t wearing his coat.  When we were signing him out he asked us if he should go get his coat.  It was actually a day he probably could have gotten away with it, but we said he’d be ok for the short walk outside without it and he was fine with it.  So it’s nice that they must have gotten through to him and he didn’t seem to mind.  I did feel slightly guilty like I told on him, or like I’m making things more difficult for him.  These are things in the grand scheme of things aren’t that big of a deal.  And I just want him to be happy.  But luckily he seems to be going with the flow as best he can.

 We brought the kids with us for the first time.  We thought it might be a little intimidating for them, but they did well.  He has never been very conversational with them, especially with the past phases of his illness.  But he did seem happy to see them and he commented that he was happy we brought them.  And he seemed concerned on whether or not they were having fun.  When the day was over he said it looks like they enjoyed themselves.  And he was right.  They had a blast.  They watched him play pool for a little bit, but then I had to move them to a smoke-free area after 45 minutes or so.  So they got a chance to play pool on their own, check out Pogo the parrot, eat some snacks, and play some games.  They were disappointed when it was time to leave, so I think it will be ok to bring them back with us soon.

 

 

Update and 4/12/14 visit

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

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

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

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

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

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

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