Tuesday, August 26, 2014

8/20/14 Visit - Veterans' picnic

Last week we visited dad on a Wednesday since the VA home was hosting one of their monthly picnics for the veterans.  Since dad doesn't usually expect us on a weekday, we didn't see him sitting in the lobby waiting for us.  Instead, we found him sitting at his desk, in his room, working on his puzzle books.  He had his back turned to us, intently working, that we had to greet him more than once before we could get his attention.  He was very happy to see us and quickly wanted to go shoot pool. 

Before we left his room, my sister and I noticed there was a nurse sitting at the bedside of his roommate. We didn't think too much of it at first, but then wondered if something might have been wrong.  When dad was moved to the dementia unit this past winter, while it was sad to learn that dad would be the youngest in the unit, it was a little amusing to find out that he was being paired up with the oldest resident.  I don't think they've ever spoken a word to one another. 

Once we left the unit, we decided to start by taking him to the picnic so that he could eat right away and we can spend the rest of our short visit shooting pool.  It's sometimes hard to flip the script on dad and introduce a new routine and if we start by shooting pool, he will lose sight of the other things planned for the day, and we definitely didn't want him missing a meal.  Unfortunately, due to the weather forecast, the picnic was moved indoors, but the food was still good and they had some entertainment. Dad seems to light up when he sees other veterans or staff that he recognizes from his unit, especially when they are all outside of "lockdown." It's like their world just got a little bit bigger, at least temporarily. 

Dad usually has a hard time sitting still, especially when we try to do something new.  He was anxious about getting food and then getting over to the member's lounge to shoot some pool.  But I went outside with him so he could have a cigarette while we waited for them to finish setting up for lunch and that seemed to help.  After that, he was really quite calm and didn't seem so antsy. He ate his lunch and commented about a lot of the songs the band was playing, even tapping his hand on the table to the beat. 

After lunch we made our way over to the member's lounge where our brother showed up to shoot pool with dad. Dad still likes to read the signs along the way and I always like to see if we can still make him laugh.  When he pointed out the sign in one of the kitchen areas that said, "Please do not store bait in the refrigerator." I asked him, "Where am I supposed to put all the worms that I brought with me?"  He laughed and said, "you didn't bring any worms, did you?" I wonder if he thought that just maybe, I had. But he's still pretty sharp with the banter and jokes, so that's good. 

After several games of pool with Ricky, dad actually remembered that we needed to leave by 2pm so that Denise could get home in time for the school bus drop off. At about 1:40 he suggested that we start heading back. It seemed like enough time, but we always forget that it takes longer than we think. He's got a routine for everything, and returning to the unit is no different. There's more signs, bathroom stops, one last smoke break and sometimes we look at the birds in the lobby before finally ringing the buzzer to let us back in. 

Then once we are in the unit, he takes his "shortcut" back to his room, which is not much shorter than the other way, but we always meet back at his room after signing him back in and returning his smokes.  When we returned to the room, it was quite obvious that his roommate was not well. We realized that he was probably moving on soon, as there was a different nurse at his bedside, making him comfortable and taking notes. I think they were watching him around the clock in what was probably his last hours.  We got it. Dad probably did not.  He went right to his desk to work on more puzzles and was blissfully oblivious that he might be getting a new roommate soon. 

Tomorrow we go back for dad's quarterly assessment report from the staff, so we shall see...

Thursday, August 7, 2014

Judgment

So this disease has made me more aware of something.  Before, a person's appearance - someone lacking hygiene, an overgrown beard and ratty clothes, maybe a homeless person...I'd immediately start to judge.  Not voluntarily, but I'd be a little scared and not give their story much thought.  Seeing my dad go through this and being on the other side of it now has opened my eyes.

When I used to take him to run errands, I'd see the looks from other people.  Judging.  The hygiene that wasn't the greatest, the clothing choices that made no sense, the behaviors that were just odd.  I'd follow him through a store and have to monitor the food he'd pick up.  I'd follow him to the beer cooler and tell him he wasn't allowed to get any.  And have him politely respond "no? ok" and put it back.  It crushed me every time.  I'd follow him up to the gas station counter where he wasn't always so polite in requesting his cigarettes.  And then he'd stand there and have them wait while he opened the pack and gave them the garbage to throw out.  Even if someone was waiting in line behind him. Odd, and maybe a little off-putting for them.  But I knew it was just his routine.  He had to do it. 

Taking him to check on his PO box, where I knew he had not gotten mail in months, maybe years.  But he had to check it.  One day they wouldn't give him his key until he paid his bill.  I wanted to talk to the manager about paying the bill (and closing the account) and the attitude I got was definitely noticeable.  To them, he was a pain.  Came in all the time bugging them and he never paid his bills.  To them, I was associated with him.  And they really didn't want to give me the time of day either. 

When things hit rock bottom and my dad was arrested for trying to get cigarettes out of parked cars, we had to deal with the corrections officers at the jail.  We called every shift to make sure the new officers on duty knew the situation and understood he was sick.  Some of them didn't seem to get it and didn't really care to get it.  To them, he was a nuisance.  We went in one day to bring him some crossword puzzles and to see if we could see him.  They acted like it was such a hassle and in the end refused.  They did take the puzzles and said they'd give them to him.  Turns out, they did give them to him.  On the day he was released, as he was walking out the door.  To them he was just another criminal.  They had no idea what we were going through.  What he was living with.  Lucky them, they don't have to get it.

We've been having a rough time selling my dad's house.  Not an easy sell when there's a water problem in the basement on top of everything else.  I had a water proofer come out this week to give me an estimate.  I've never dealt with anyone in a service industry that was so rude in my life.  Appalling.  And I could sense the judgment he had of the place too...the odors in the air, stale cigarettes that we just can't get rid of.  If he only knew the half of the story behind that home, my dad, our family.  But he was as rude as can be, shooing the cobwebs and complaining that he should have me walk first in front of him so they hit my face instead of his.  Judging that we would not have the money for the repairs.  I was emotional about the situation as it was, having to deal with selling my dad's house when he has no idea.  No idea all his stuff is gone, his house is on the market and that we continue to drop the price month after month.  But people will continue to judge.  The appearance of the home and the man that used to live there.

I truly hope that this has taught me a serious lesson. A lesson I will pass onto my kids.  You never know a person's story, and you should never judge them on their appearance.

Tuesday, August 5, 2014

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.