Category Archives: Lessons Learned

Independence Day

Papa has been to 23 games at Nationals Stadium so far this year, and numerous games last year.  He loves going to games.  We have a routine how we enter and leave the stadium and stick to it for every game.  Every single game.  Even if Papa suggests we walk a different way we explain why we can’t and stick with our given route.  We have always told him that if he does not see us for any reason to follow the crowd to the gate and make his way to his seat and never to leave the stadium.  If we are separated after a game we rendezvous at  the flag pole in center field and watch Johnny Holliday and Ray Knight broadcast the post-game report until we are all together again.

July 4, 2015
July 4, 2015

On Game days Doug drives Papa into the South East section of DC and drops him off at my office on M Street where I meet him downstairs in the lobby.  Together Papa and I walk over to the stadium while Doug parks the car in a garage on the Washington Navy Yard.  Last year Doug and Papa parked together and came up to my suite on the 8th floor, but this year Papa does not want to walk the block from the Yard or take the extra steps across the lobby to the elevator, or perhaps he does not feel comfortable coming up the elevator by himself, but whatever the reason is we will do whatever works best for him.  Papa knows the security guards in my building and they let him sit in a chair until I arrive and the two of us will then leisurely make our way over to the Ball Park following the same path we always take and wait for Doug in our seats.  Typically we arrive in the stadium well before the rest of the crowd and are able to sit and relax as we watch the visiting team take batting practice.  Papa likes to sit and relax.

Papa enjoys the games and our season tickets have been great because he knows where “his” seat is.  Once he is in the stadium he takes a shortcut behind a clothing vendor over to section 110, flashes his Nat’s Access card to the attendant, walks down to Row S and sits in Seat 5 for the duration of the game.  Other than standing up for the National Anthem, and God Bless America in the 7th inning Papa truly does sit.  I believe that his logic is that he paid for that seat and he is going to use it, but Doug may have another opinion.  Papa quietly roots for our team, and may never understand the excitement of the crowds as they stand and loudly cheer for our team much of the game.  Why does everyone keep jumping up and down?  In his mind he would not stand up if he were home sitting in his brown recliner, why should he make that effort just because he is sitting outside in a blue stadium seat surrounded by 30,000 to 40,000 Nat’s fans.  Standing is a disruption that blocks his view; it is as if someone changed channels on the TV during an exciting moment not allowing him to see what is happening.  Yesterday the first pitch thrown to our leadoff hitter was a home run, batter two hit a double into the deepest part of center field missing the top of the wall by inches, and our third man at the plate hit a two run homer, all against one of baseball’s best pitchers and the reigning World Champions.  What happened?  What is going on?  Papa was already annoyed that the crowds were on their feet so we quickly moved him over one seat so he had a young child sitting on front of him.  He as then happy to be able to remain sitting even if “junior” and the other 40,000 + fans were on their feet.

Some days we bring a picnic meal into the game, some days we stop at a neighborhood market, and some days we enjoy a stadium half-smoke from the infamous Ben’s Chili Bowl.  Papa typically has a PowerBar as his pregame snack, enjoys his meal at the start of the game and by the 7th inning he is generally snacking on popcorn or a curly W pretzel or recently a scoop or two of chocolate gelato.   It is all a routine; it is the same every game.

Papa worked at a Sinclair Station when he was 13.
Papa’s first job was at a Sinclair Station when he was 13 years old.

Exiting the stadium is identical except the crowds are much denser.  We slowly head up the stairway from our seats, which are close to the field, and across to the nearest restroom as Doug jogs ahead to get the car.  Papa and I walk out of the Center Field gate, make a sharp right and head down N Street for a short block to the corner of New Jersey Avenue.  On hot days Papa buys a second ice cream from a local street vendor on this corner who knows us as repeat customers.  We continue along Transportation Walk, the shaded area behind the two Depart of Transportation (DOT) buildings, discussing the old gas pumps, Sinclair was the first gas station I worked at, or the bicycles, I always thought it would be neat to have a three-wheeled bike, or the many other items displayed.  We cut in-between the two DOT facilities across a courtyard to the corner of 3rd and M Street where we wait for the light to change and he imitates the cross walk voice wait, wait, wait, walk light is on across M Street.  Papa always jokes that he wouldn’t mind that job; all they have to do it tell you when to walk.  Once we have crossed the street we wait under the canopy entrance to my building which takes up the entire block until Doug arrives with the car.  Our walk is less than ½ a mile, or if we were counting in steps 1035 for me and approximately 2070 for Papa.

The early morning game on the Fourth of July was no different.  After a big Nat’s win Doug took off to get the car, Papa went into the men’s room where I reminded him that I would be standing in exactly the same place centered between the entrance and the exit of the bathroom, and I waited.  I waited watching the crowd exit the stadium and the grounds crew working on the field.  After 10 minutes I texted Doug to tell him we would be later than usual today.  I continued waiting as I monitored both the entrance and the exit with periodic glances over to the flag pole.  No Papa.  With my mind thinking the worst, I asked a gentleman to see if Papa was still inside and quickly described him:  red t-shirt, white hair, and my height.  Knowing I had probably just described thousands of fans I quickly yelled into the restroom that his name is Wayne as he was walking into the facilities to look for Papa.  Nothing.  After waiting 15 minutes I texted Doug again, who by this time had arrived at our pickup location.  The stadium had almost completely cleared and I asked a second person to check the men’s room.  Nothing.    I was very worried by now and turned towards the deserted flag pole and Papa was still not there.  I was asking for stadium security when Doug called to say he saw Dad making his way between the DOT buildings and waiting at the corner to cross.

The guys waited as I walked to their location and I am sure Doug and Papa had a long discussion as Doug explained how worried I had been standing outside of the men’s room while the stadium completely cleared.  As soon as I got in the car Papa said, I am sorry Sandy; sometimes I don’t listen too well.  I didn’t see you.  I went to the flag pole and then thought you started ahead of me.  I don’t really know what I was thinking.  He felt terrible and could not understand why he had left the stadium.  We could not understand it either.

Memory loss is terrible.  His short term did not remember where I was waiting for him, but his long term memory, due to making the trip so many times, was able to pull the correct route back to my office and our pickup location.  Papa says he was not worried when he didn’t see me, and I hope that is true.  I wish I understood what he was thinking as he walked out of the stadium.  Was he looking for me as he walked up the road?  Did he buy an ice cream?  Did he make the same jokes to himself as he walked by the antique gas pump or did he mimic cross-walk talking?  Papa doesn’t remember.

I will keep reminding Papa that we are always there for him.  Always.  I do not leave Papa alone in a store, I will not leave Papa sitting in a car when he doesn’t want to go on an errand with us, and I would never leave him in a stadium with over 40,000 fans wandering around.  Never.  Thank Heavens he was able to safely find the way, and we were able enjoy the rest of our 4th of July with a barbecue and fireworks.

July 4, 2015
July 4, 2015

As Seen on TV

Papa does not walk as much as he did last year, but we make an effort to make sure he gets a bit of exercise in each and every day even if he isn’t looking forward to it. No, I don’t need to walk today or I walked yesterday are heard in addition to my feet are mushy. What does that mean Dad, do they hurt? No, they are mushy. They’re just not stable. I take a quick look at his feet before he puts on his shoes to see if they are swollen, or mushy, and hand him his shoe back. Boy, you’re tough; I am not going to change your mind about this walk today, am I? Shaking my head I ask him if he wants to take the long or the short loop and off we go.

Papa found a new TV station a couple weeks ago, ME TV on channel 462. He was raving one night at dinner about how he found the new station just by pushing buttons on the remote. It has great shows; I remember them from when I was younger.  We were pleasantly surprised that he had ventured away from the safety of his 4 proven networks and their violent SVU or CSI reruns.

downloadMemorable or ME TV is full of classic shows such as Make Room for Daddy, Gunsmoke, Car 54 Where are You, The Rifleman, or F Troop and many other shows that were filmed from 1950-1970. It is his new favorite station and every night as commercials air in between innings of the baseball game Papa quickly switches over to channel 462 for a few moments of The Andy Griffith or Danny Thomas Show or as I soon realized, the commercials that show up on that channel. After several days of channel hopping we heard, This is it! He found the As Seen on TV infomercial he wanted us to see.

The Foot Angel is an anti-fatigue compression sleeve. It claims to boost circulation, reduce swelling, and provide relief for achy feet. It is lightweight and comfortable and can even be worn to bed. Wow, even to bed! Isn’t this great! Do you think this might help with my mushy feet? To me it looked like a short, opened toe compression sock, and I wondered how many times he had seen the commercial. Doug just rolled his eyes as he finished folding the laundry, but Papa was sold on the Foot Angel. Last year Papa was prescribed 30/40 compression socks to wear daily, but just getting them over his very wide 11 ½ EEE foot and up his inflexible leg was enough of a workout that Doug broke out in a sweat and Papa was out of breath each time they were put on.   The cardiologist told us to make sure he wears them if he is traveling for a distance by car or plane, or for long walks, but if he can’t wear them every day he understands. I was skeptical that the Foot Angel would be any different but Papa was emphatic, I think I need those.

I looked them up online and found several stores locally that supply them and while Doug was doubtful he quietly went along with us. I figured if Papa thinks they will work that is good enough for me, and we were off to Walmart.   We spent over an hour on a Friday evening looking through the store with an anxious employee in search of the Heavenly Foot Angel. Correction: Papa spent 10 minutes and found a bench to sit and rest his mushy feet and Doug wandered off to see if they had any Nationals gear in the store. I looked in the pharmacy area by both the compression socks and foot inserts. I looked in the men’s and woman’s sock area. I looked by the workout gear and in the shoe department. I looked in the As Seen on TV aisle. I pulled out my ipad and showed an employee what the package looked like and when she finally tired of me she found her manager to assist the crazy patron. Before I threw in the towel I scanned what I had just renamed as the TV Crap Aisle one last time and finally found a pair, size small tucked under some empty boxes. Success! I ran over to show both Papa and Doug that they really do exist. You don’t think that pair will fit me? Doug rolled his eyes for a second time and I said no way Papa, this won’t even stretch over your big toe. Sadly we left Walmart without making a purchase and Papa wondered if he would ever find them.

Papa taking a shortcut through the cart entrance to rest his mushy feet.
Papa taking a shortcut through the cart entrance to rest his mushy feet.

It was getting late and I asked the guys if they wanted to stop atTarget on the way home. Simultaneously I heard ‘they are not going to have them’ and YES! On a mission for Papa I sided with the YES vote and pulled into the Target parking lot. Knowing where to look this time we quickly found an XL Foot Angel on the AS Seen on TV end cap. Papa smiled. I saw a visible pep in his step as we headed to the register. This would cure everything! No more mushy feet! By 8:45 we were home, tuned into the end of the baseball game and Doug was onto his 4th workout of the day squeezing Papa’s wide foot into his new Foot Angel foot sleeve. Papa loved them! My feet feel great! I am going to wear them to bed! I did not see it, but I imagined that Doug rolled his eyes for the third time that evening.

Saturday morning as Papa and I ate breakfast he asked, I was talking to my feet last night, did you hear me? No, what happened? I had to take my new socks off in the night, they were hurting my feet. I did a little talking to them because they didn’t come off too easy. I actually had to stifle a laugh and was thankful that Doug was working out so we didn’t hear his “I told you so”. The socks have been washed and are now hiding in the bottom of Papa’s sock drawer.

I still come home from work every day and if we don’t have a game Papa and I walk around the block or if it is too hot or humid we walk up and down the aisles of Target. I still hear, I don’t need to walk today or I walked yesterday or my feet are mushy. They just are not stable. But he has now added I am old; walking is going to kill me. To which I pleasantly reply that he has it backwards, not walking is going to kill him.

Papa has since moved on. Guess what I saw today, Brett Favre has some new copper socks that help tired feet. Do you think that will help me? Do you think we should get a pair? Thanks for the infomercial ME TV, but we are not rushing out to look for copper socks tonight, even if they work for Brett Favre.

A Cup of Joe

Papa has his own schedule during the week; he can sleep in if he chooses, change from pajamas into sweats (otherwise known to him as lounging clothes) and drink his morning coffee while tuning into Walker or Gun Smoke. He is not on anyone’s schedule and can be as fast or as slow as he wants to be. While we may not know the exact time he starts his day, he leaves many signs along the way for us to track his movement around the house. He leaves a crumpled towel on the bathroom counter if he chose to shower that morning. We see a coffee mug in the sink along with a bowl full of water if he prepared the oatmeal we left out for him OR crumbs on both the cutting board and counter by the toaster if he decided he was in the mood for a bagel. We see a green plastic water cup sitting beside the sink with a Tupperware container next to it if he ate the lunch we prepared. If we don’t see an empty container we know he probably made himself a peanut butter sandwich at noon, leaving more crumbs on the counter and a knife in the soaking oatmeal bowl.  I don’t need to dirty a plate; I will just hold my food in my hand. A few times we have not seen any dishes in the sink or crumbs on the counter and had to ask him what he ate that day. He smirks and says, I don’t remember, not thinking he left an empty PowerBar wrapper (or two) on top of his banana peel in the trash. He sets the mail on the kitchen table and lets us know as soon as we walk in the door if there is anything addressed to us, expecting us to check it immediately not realizing that most of goes right into the shred bin.   And lastly every day we notice several new drops of coffee that have been splattered on the carpet or walls as he carries his morning cup of Joe downstairs to the family room.

Sundays routines are different, we are up and trying to get out of the house by 9:00 to make it to church on time. It never works; we typically slide into our pew as the congregation is midway through the opening hymn. It does not matter if we wake Papa up at 7:30 or 8:15 he heads down to the kitchen at precisely 8:55 and asks, how do I look? After confirming he looks great, he says, I am not really hungry and grabs a banana knowing we will remind him to eat something with his morning meds. He peels the entire banana and throws the peel in the trash before taking the first bite then lays the open banana on the counter. Papa walks three steps to the left and turns on the Keurig, opens the cabinet above the coffee maker and pulls out both a fresh green plastic cup and a coffee mug and starts violently shaking his small packet of Vietnamese Coffee before tearing it open and pouring it into his the mug. He fills the water cup by the sink and walks back to his banana. I always look at him and smile at this point and he defensively mentions, the water on the refrigerator takes to long, I don’t mind tap. While I think he does this to save from walking across the kitchen, I assure him he can drink whatever water he prefers. He goes on to take another bite of the banana before he pulls out his daily pill container and dumps his morning medications onto the counter next to his banana. He licks his finger and sorts the pills on the counter by size before he starts swallowing them.   By this time it is 9:05 and he is finally ready to push brew on the coffee maker. More often than not Doug is waiting in the car as Papa and I both watch the water fill his mug and then proceed to stir the coffee no less than 20 times (I have counted), he takes a sip and loudly sighs, WHEW! He looks at me and asks, where is Doug? I pull out an insulated travel mug, pour his coffee into it and cheerfully say, “in the car, let’s go!”

This morning was different. Doug ran a neighborhood 5K and not wanting to be late I knew there was a good possibility we would be driving two cars to church today.   Papa asked, where is Doug? and I reminded him Doug was racing and he would drive separately today. Will he meet us at the church? I handed him a new insulated travel mug with his Vietnamese Coffee and assured him that Doug will meet us before communion and we started walking to the car.

I glanced at the stained carpet at the foot of the stairs as we were walking outside and had a brainstorm, the perfect solution to our daily drips of coffee dilemma.   If Papa used one of the insulated travel mugs every day he wouldn’t spill any coffee walking down the stairs! Why hadn’t we thought of that sooner? I smiled to myself thinking this is great; sometimes the answers are so simple and right in front of you the whole time.

Halfway to church I realized Papa had not had a sip of his coffee yet, so I reminded him it was warm and ready. He picked up the new mug, looked at it and twisted it in his hands. He pushed the locked button with his thumb on his chin and attempted to drink from it using the vent hole. I realized my genius idea of having him use a travel mug every morning will only work if he knows how to use the travel mug. Fortunately there was a red light where I could quickly show him that the lock button faces away from him and he can hold it down with your fingers as he drinks out of the larger hole. Papa took a sip. Huh! This is pretty sharp! I never saw anything like this before.

Papa's new cup
Papa’s new cup

Tomorrow we will leave a bowl on the counter with two packets of instant oatmeal in it, along with his white board with a note saying there is either a ham sandwich or tortellini on the second shelf for the refrigerator, but we will also leave a travel coffee mug. And hopefully when I get home from work I will see the empty mug in the sink along with his oatmeal bowl. Now, if we can just find a way for him to use a plate so there are fewer crumbs on all of the counters…..

It’s Good to be Home!

Papa might have arrived back at our house in mid September but it took a couple of weeks for him to really come home after his summer vacation. His July vacation turned into an extended two-month stay in California and a quick jaunt to Hawaii vacationing with the West Coast Maroccos’. Traveling can take a lot out of anyone but is extremely difficult for a person with memory loss. Not only does a person experience the anxiety of actual travel, but adjusting into a new environment and then re-acclimating once you arrive home is not easy. Familiarities and routines that may have seemed dull to an outsider are actually a lifeline for people with memory loss. The stability of his day-to-day routines offers a sense of peace, which can be disorienting if broken. He left being an active part of our home life and returned as if he was only here for a temporary visit. In the past month I have realized we may never get back to all of his former routines, but we are constantly working with Papa and reassuring him we will find new ones.

Some things did not change. The day Papa came home he walked directly to his chair, sat down, picked up the remote and said my chair is still good, and I missed my TV. We call Papa’s fancy electric recliner his command center, like his room it is his space entirely and does not change no matter what else is going on. His table that was brought from Arizona is covered with his belongings and we use caution in dusting it to make sure everything is put back in its place. He might offer his seat to another person, but you can sense an anxiety in his voice as he says it. Do you want to sit in my chair really means please sit somewhere else in the room and I will turn on Walker, Texas Ranger for us to watch. That chair is his space, his bubble, his comfort zone. It holds photographs, unread magazines, word search books and his calendar at his fingertips.   He controls the remote and screens every telephone call without stretching more than an arms distance. He is able to sit in that space and make immediate choices that affect both him and everyone else in the room.

Other changes were quickly noticeable. Papa never really said NO before, he has always been game to try new and different experiences and would let us know what he thought afterwards. When he first returned home I was worried with the frequency of the two letter “N” word. He may have mentioned he was tired of walking at times but he never stopped doing things. Now we heard NO, I am old; my feet don’t work right; I can’t walk like I used to. No, I will just wait here. I don’t know if I want to do that or No, I don’t know what I want to eat. Sometimes he would just look at us and shrug his shoulders. I had not realized how much of an issue this really was until he decided to sit in the car instead of going into Costco with Doug his first week back. Costco on a Sunday afternoon is like a playground for Papa, he enjoys the free samples at the end of every aisle or picking up a hotdog or a frozen yogurt on our way out. He did not exercise as much on vacation due to a medical issue, but that has been resolved.  We realized we have to start from scratch to build him up again, to find things he is interested in doing, increase his stamina and encourage him to say YES!  We started slowly walking again, very slowly. But every step he makes is a moment he is up and experiencing life.

I am not sure if Papa had forgotten or if he just didn’t feel comfortable any longer loading his breakfast dishes or bring his dirty clothes to the laundry each morning. He didn’t remember that he used to help me cook dinner every evening or help Doug clean up the kitchen afterwards. His new habit after a meal was to immediately go right back to his chair and ask us when we were going to come sit down with him and watch TV. Where he used to involve himself as the center of our activities he was now worried about getting in the way. But most discouraging for us was noticing he was pausing and waiting for someone to answer for him. We reassured him constantly that indecisiveness is not an option. Papa has a voice and must be an active part in discussions and decisions that affect him. Even if he does not recall each conversation we want him to always be able to freely express his questions, wants and needs and he is never, ever in the way.

I was not prepared for Papa’s slow acclimation back home and was thrilled each time I saw his comfort level expand from his chair to the rest of the house and then to outside activities. We noticed he started feeling more confident after his first ROMEO (Retired Old Men Eating Out) breakfast with the guys. Our weekly Costco runs have improved to where in week two Papa went inside and waited by the snack bar but by week three he watched the Smoothie demonstration for 15 minutes and then wandered over to pick up each and every one of the free samples being offered that day. He loves seeing his friends at church on Sunday, especially when Karen brings him cookies. We went to a car show this past weekend and he looked under every hood and ended up walking over two miles without noticing the distance. We have set out a white board to remind him what his options are for breakfast and lunch or if there is something he can do during the day to keep busy. Last night after running a few errands and then sitting at our neighbors little league game he mentioned I think I want to let my hair grow for a while and It is good to be home. No longer feeling like he is on vacation he has started acting like he lives here again. Yes Papa, we are happy you are home too!

 

Go Green! Go White! Go Graduation!

Papa’s granddaughter graduated from Michigan State University earlier this month. Doug and I had prepped Papa for months and we were all looking forward to our road trip to Spartan Nation to attend Tiara’s commencement ceremony and spend a few days with family. We realize how important it is to remain consistent when we tell Papa we are going to do something and after discussing the specific trip details repeatedly and putting the dates on his calendar he understood our schedule for the trip.  It is difficult for Papa to comprehend the unknown or accept last minute changes.

Virginia, like many other areas in the country received unbelievable storms this spring. Daily rainfall records were shattered on April 30th. When I left work that afternoon the weather reports promised that heavy rain and thundershowers would continue through the evening and into the night with localized rainfall rates of 1-2″ per hour, so saying it was going to be a damp evening just did not do it justice. I picked up Christina from her New York City bus and we decided to stop and get Papa his new favorite hamburger for dinner (Bobby Burger Palace).   We knew Papa would not only love the surprise burger, but he would enjoy that we would have more time to sit and relax with him that evening by not having to prepare dinner. My new car was already packed and we were ready for our first road trip the next morning.

I pulled into the driveway and the moment I saw water flowing out from under the garage door I knew we were in trouble. We walked in to find 4 inches of standing water covering our garage floor, and a raging river running through our crawl space. It was going to be a long night.

Papa was sitting in his recliner watching TV and calmly said Hi when we walked in just as he does every day, he did not offer any additional comments. Exasperated I asked if he had been in the garage. Yes, it is wet. Where is all that water coming from? I explained the crawl space has flooded and was overflowing into the garage.   Why didn’t you call us? I don’t know. I am sorry. Christina and Papa went up to eat and I started picking up items off of the garage floor before Doug arrived home.   We spent the next 8 hours pumping out the crawlspace, moving things and clearing water out of the garage not to mention hauling over 20 boxes of Christmas items into the house. Doug and I ended up eating only a few bites of our dinner and relaxing was now out of the question.

Papa apologized several times over that evening, he felt responsible for not contacting us when he noticed the water and he really wanted to help us clean things up. We explained that it was ok, the flood was not his fault and we would take care of it. In hindsight I can now see it may have been better to have him help; to assign him a task to complete along with us. At the time I was worried about him getting cold and wet, slipping in the water, or trying to lift a packed crate that was too heavy for him. But I also have to admit it was just easier knowing we could move things to drier ground a bit faster than his 80 year old body would have allowed.

We woke up the next morning to a bright and sunny May Day. The crawlspace was down to a small stream and the garage was damp with fans blowing and the door wide open to help circulate the air.  Papa was excited. Today is May 1st. What time are we leaving? Just as we had discussed for months, Papa was packed and ready to head out on our 600 mile road trip to East Lansing, Michigan. He did not understand that one of us would now have to stay home. But it is nice out today. Yes, but we have to make sure things continue to dry, and more storms are forecasted over the next few days. It looks pretty dry. I know Papa, but unfortunately it is still wet. The garage will need to continue to air out until it is completely dry, if it is closed off now things will start to mold.   Papa was not happy, his family is his life and he wanted everyone to be there as we had so patiently described in our trip details.

Papa and his boys!
Papa and his boys!

We could have flipped a coin or drawn straws to see who would go with Papa, but because I had already been on a road trip with him this year Doug offered to go. I was sorry I would not be there for Tiara’s big day, and I knew I would miss the excitement of both a road trip and seeing the rest of the family. Not wanting to take my new car without me, they switched vehicles, packed a few extra snacks and were ready to hit the road. Doug and Papa did not take my itinerary and did not stop at any of the locations I had planned to stretch our legs. They did not use Papa’s America the Beautiful National Park Pass. They were men on a mission and other than the five McDonalds they stopped at in search of a working shake machine their trip to and from Michigan seemed pretty quiet and uneventful.

I smiled and waved as they backed out of the driveway. I had a couple days off of work and I was ready to fill them. I cleaned the garage. I rented a movie. I dried and repacked the Christmas items that had been stored in cardboard boxes into new plastic crates. I drove my new car. I rented another movie. I cooked my favorite meals and ate them watching the movies I rented. I stayed up late checking the weather. I read. I slept in and was able to walk around the house in my PJ’s. I went to dinner with a friend.   I rented a third movie. I sold Doug’s old car. I cleaned out my closet and went through my summer clothes. I didn’t have any extra cups sitting on the counter waiting for me to load in the dishwasher. I didn’t have to turn down the volume on the TV when no one was looking. I didn’t have to worry about what or when others ate or took their meds or if they showered. The garage didn’t seem like such a big deal anymore. I had not realized how much I had needed those few days to myself.

Last night during dinner, Doug mentioned the Ahi Tuna tacos he had eaten in Michigan and Papa looked at me and asked me what I had eaten there. I reminded him I was unable to go on that trip, and he just shook his head. We reminded him of the flood, of the 20 hours in a car with Doug and he just kept shaking his head. He finally conceded and that I was not a part of the graduation trip but sadly Doug and I both knew that his memory was playing tricks on him. Papa can clearly recall occasions that happened 70 years ago, but seemingly significant events now get all jumbled up. If the conversation came up today, he would again believe that I had been there.

Lesson learned: We love Papa and truly realize how much his life changed when he came to live with us, but sometimes we overlook that our life changed dramatically also. We want to help give Papa the best life possible. We want him to be happy and healthy. We want him to experience and enjoy his time, even if he doesn’t remember it all. Doug and I led a very full existence as empty nesters and much of that was put on hold when we became golden nesters. We are still busy, we just have different demands now; we have a third person who depends on us for many of his daily needs. But to give him the best life we have to make sure that we carve out bits of time for ourselves. We have to make sure that we actively spend small amounts of time doing some of the things that we used to enjoy, things that do not necessarily involve or revolve around Papa. By taking time for us, we will be able to provide a better life for Papa.

Tiara and Papa
Tiara and Papa

Congratulations Tiara, we all look forward to seeing you on another road trip!

Bobbles

One day last week we were on our way to the stadium to watch our Nats get another Curly W, and realized that sometimes just getting to our seats in the ballpark is half of our adventure.

We often hear Papa say I never heard of that, even if it is something we have already done or discussed many times before. Occasionally there are the random things that stick with him after his first or second experience. These are what he likes, the types of things he wants more of. He remembers when his breakfasts or potlucks are scheduled; they involve both food and friends. He knows Karen brings him cookies, which he sets next to his chair and keeps for himself.   He cannot recall that Daryl, the kids and I took him to Chase field in Phoenix last summer which is home to the Arizona Diamondback and Papa’s previous allegiance, but because we visit Nationals Stadium frequently he has no problem remembering aspects of our ball park. He now realizes that he needs a new ticket to each ballgame we attend, and he knows the way from the parking garage to where we sit. He loves eating his way through 9 innings, and because he has now been to several games with promotional give-away he believes that he will get to go home with a goodie of some sort after each game he attends. These giveaways are something he can hold on to and are much better than the temporary tattoos he finds in the bottom of his bag of Cracker Jacks. We received a Jordan Zimmermann Bobble head last month. What’s a bobble? It’s called a bobble head; it is a figure with a big head that kind of shakes, people collect them. Papa has moved from I never heard of a bobble head to wanting the entire team.

Friday night was Wilson Ramos bobble head night. Papa needed one and wanted to make sure we all walked out of the park with an obligatory bobble head also. There were 25,000 given out at the game and because we typically arrive early the likelihood we would be going home with one was pretty high.   But then life hit and we realized we were becoming the underdog in those easy odds. We had a late start, we hit Friday night DC traffic, and we had a slow walk with Papa from parking garage to the gate, and it was a beautiful Friday evening with almost 35,000 fans attending the game. Knowing we had cut it pretty close Karen and I walked ahead to try and get a couple of the sought after Ramos bobble heads.

We walked in through the centerfield gate only to find empty tables and discarded boxes. My heart sunk as I realized Papa was going to be sad if he doesn’t get his bobble! Knowing Doug and Papa were still outside I texted them and suggested they go to another gate hoping that they would have better luck. Meanwhile we were directed to the next entrance to see if they had any remaining collectables. We weaved our way through the current of fans to the left field gate, they told us to move on to the 3rd base gate. We arrived at the 3rd base gate with a line of people and a couple fans received our prize but the rest were advised to go to the home plate gate. Karen and I had one between us and figured we didn’t need any more so went to find our seats.

Doug and Papa were still outside the park looking for an entrance still carrying the collectables and did not know we had found one for him. They were headed to the right field gate and were advised there were none left and to work their way towards the home plate gate. Doug started walking toward the first base gate and Papa with his ticket in hand said I gotta pee! At that moment Papa deciding that finding a restroom was more important than Wilson Ramos, he turned around to walk up the stairs to the right field gate by himself. Doug called me and said he has already disappeared in the mass of people. Papa was gone. We decided that he was in the park already and because he has been to weekly games he hopefully knows the general vicinity of where we sit. We had faith he would hold onto his ticket and keep asking until he found his seat (and us). We were obviously concerned, but less worried than when we couldn’t find him in our own quiet neighborhood. There were after all thousands of people he could ask for assistance. This would be a good test for him before he gets ready to fly to CA next month.

Doug ended up walking around the stadium to the home plate entrance and was given two bobble heads after explaining his gate to gate adventure. As he turned around to make his way to our seats he saw Papa in front of him with a big smile and a small box containing our Nat’s catcher. Papa had stopped for his business and as he made his way around the inside corridor of the rest of the stadium he passed the home plate entrance and sought out a bobble head with his ticket. Success! Doug and Papa were reunited again and as they made their way down the aisle to our seats, Papa was beaming and proudly handed me his Wilson Ramos bobble head box to put into my bag.   I am hungry, who wants a hot dog? The quest for bobbles was over; it was time for food and baseball!

During the 3rd inning Papa got up and started talking to a couple people on the other side of the aisle. They chatted for a couple of minutes, smiled and shook hands before Papa returned to his seat. We asked him what that was about. That guy left for a while and just got back to his seat. I wanted him to know that while he was gone I was watching the bobble head he left under his seat to make sure no one took it. I would have stopped them; those bobbles are hard to come by. It is easiest for Papa to see and pay attention to what is right in front of him, and that lonely bobble head under an empty chair was standing in-between him and the game. As we were focused on a great game, Papa was bobble-sitting and we didn’t even know it.

During the 8th inning Papa’s new friend and his female companion from across the aisle stopped by on their way out of the park. He shook Papa’s hand again and said it was nice to know that someone had his back while he had stepped away. He handed Papa a Ramos box and agreed they are hard to come by, they had one and wanted Papa to have their other bobble head. What a smile! Not only did the Nats win, Papa was thrilled that he had scored an extra bobble!

We learned several lessons on this outing.

  1. Make sure Papa always uses the restroom before we leave the house.
  2. Leave earlier to get to games; you never know when you will hit DC traffic. I can’t imagine how crowded the stadium will be for the Jason Werth’s gnome promotional giveaway.
  3. Never seat Papa on the aisle; while he makes friends with his neighbors, it is much too convenient for him to purchase food from the vendors. Thank goodness he doesn’t drink beer!

Odd Jobs

Papa retired early and when I mention to him that he has spend almost as much of his life not working as to working and he quickly corrects me to say he started working very young.  I worked a lot!  I was only 10 when I got my first job.

Papa had two older brothers growing up, and three younger siblings.  Even though they came from a close-knit family, all of the Marocco kids followed very different paths growing up.   His eldest brother, Frank, was the musician in the family.  Frank started studying music at a very young age; he was truly gifted and eventually became one of the most recorded accordionists in the world.   The second child, Joe, was the athlete.  According to Papa, Joe was able to pick up any type of ball, walk on a field and be the star of the team. The Marocco’s were very driven and Papa said he could never compete with either of his older brothers, I didn’t like the clarinet and I was too short to play ball, so my dad told me I better find a job to stay out of trouble.   Papa is still quite the jokester; I can picture his father saying that to a young Wayne.

I started delivering papers when I was about 10 or 11.  I delivered to two separate routes.  The Chicago Daily Tribune was a Sunday paper, and the Chicago Sun-Times was every morning.  The Times was much lighter and easier to deliver.  The daily papers were supplied to his house early each morning for Papa to fold before they were delivered onto each customer’s porch.   If it was raining Papa had to protect the papers to make sure they didn’t get wet.  Papa folds an imaginary paper as he explains how he creased it very tightly into thirds.  It had to be just right.  It was hard to get the papers straight. There were no rubber bands or plastic bags like there are now so I had to crease the fold for it to stay tight.  It took time to walk up to each porch for delivery, I never threw a paper.  If you know Papa you can hear the way he accentuates the effort he spent to deliver the perfect paper to each of his customers.  His father had taught him to take pride in his work and Papa did.  Papa did not have to collect any money for the daily route his customers were billed monthly from the paper, but he was able to accept tips.  People in that neighborhood tipped me good.

The Sunday Tribune cost $0.10 per issue was hand delivered to each customer who paid for it on the spot.  I had to collect the funds before I could give them the paper.  He would carry a white money pouch on his waist to make change; it was pretty secure so I would not lose it.  I asked Papa if he had a habit of losing things when he was young and he laughed and said he doesn’t remember.  It didn’t happen often but there times when someone would pay with a $20.00 bill and he would not have enough change for the rest of his customers.  After time Papa figured if someone offered a big bill at the beginning of his route he would have to say he could not make change.  When asked if he went back to those customers at the end of his route when he did have more money in his cash belt and he said No, I never thought of that.  I just sold the papers and moved on.  It was hard when people didn’t have their dime because he could not deliver one if they didn’t pay.  I couldn’t just give it to them. I wanted to but I couldn’t.  I was accountable.  The Sunday paper was not folded it was much too thick.  These papers were too heavy to carry on their own so Papa figured out a way to build his own pull cart.  He used wood his father gave him and found some wheels from an old wagon to put his makeshift cart together.  I asked him why he didn’t just use the old wagon and he explained that he liked to take things apart and rebuild things.  It was better that way. 

At the end of his Sunday route Papa rode the North Shore Line Streetcar to Porett Brothers Distribution to pay for his papers.  It cost me ten cents of profit to pay for the round trip trolley ride and when they raised the price to fourteen cents I was mad.   To vent some of his anger toward price increase, he and his brothers played “Jump the Trolley” a few times.  They would throw a rope over the electrical cable so the trolley had come to an abrupt stop causing the conductor to get out and clear the cable.  Papa made sure I understood it didn’t happen often by them, usually it was the other kids playing this type of pranks, but he did admit to doing it a few times.  He is certain his parents never found out that the boys played pranks; my dad was pretty strict; he would not have tolerated that!    I must have had a look of shock on my face, because smirking like an adolescent, Papa assured me, my brother Joe can vouch for me, we only played Jump the Trolley a few times!  Really!   Hmmm….we will have to talk to Uncle Joe….

Papa turned out to be quite the entrepreneur growing up, and while he often speaks of his first job of delivering newspapers, we were able to pull out a few more of the odd jobs her performed as young boy.   Like many young kids he shoveled snow, mowed lawns and raked leaves, but I kept digging for something else he may have done.    During the winter I used to set pins at Grand Bowl.  I was so small I had to jump on and ride the frame down to get the pins aligned.  Papa was also a caddy at a local golf course.  Joe and I worked all summer at Glen Flora Country Club and made 25 cent tips from the golfers.  One day a week the caddies were allowed to golf and Papa had a 2-iron he used for the entire course;   Joe had another club but they did not share.  When I asked who the better golfer was I could still hear a bit of sibling rivalry with his answer as he said it wasn’t me, but he would never admit that it was Joe.   

Oh, I also made good money washing store windows. Papa would go to downtown Waukegan and boldly walk into the stores to ask if they had any work for him.  Once I cleaned one window the other stores hired me too.  The store would provide cleaning supplies and Papa would make a $1.00 for each storefront window he cleaned. When asked what the definition of good money was he replied with a fair amount.  A fair amount seems to be a common phrase with Papa when he isn’t sure how to respond, but as I watched his eyes light up remembering how much money he made I was certain that in 1945 one dollar was probably very good money for a young boy.

It is funny how a memory works… or doesn’t work.  Papa can remember not only the price of the trolley, or how much money he made washing windows in 1945, but the feelings he associated with those amounts but he can’t remember if anyone else in his family ever worked when they were young.  He knows exactly how old all of his siblings are compared to him, but cannot recall when they were born.  He knows the address of every house he ever lived in, but can’t place where he was inside that home.  We can see him look off and try to bring back a memory when we ask a question and there is no recognition only to be surprised several days later when we ask in a different way that he is able to bring back a small moment to share with us.   Papa relives the excitement or frustration as he tells a story as if it something had just happened, but he never seems bothered if he can’t remember something.  Our take from this as we talk to Papa is to work on trying to dig not just for the details but to ask about the feelings associated with his memories hoping  this will trigger his overall experience and not just a few random facts.

When Doug and Daryl were very young Papa used to tell his sons the same thing that his own father told him, that no matter what job they do, they better do it well.  If you are a garbage man, you be the best garbage man!  This symbolism might have been lost on his young boys who wondered why their dad was telling them to be garbage men, but as they aged they came to understand the true pride that their father took in all that he did.   Papa eventually found his way into Tom Strang’s Garage and by the time he was 13 he was pumping gas, washing windows and already well on his way to becoming a grease monkey.  Who would have known that at such a young age after a couple of odd jobs Papa would have stumbled into his life path, but then that must be the Marocco way.

Missing

I arrived home from work on Friday hoping to relax for an hour knowing we had plans for the evening.   This had been a fun and busy week for all of us and I knew tonight would be no different.  Starting off the baseball season with a few visits to our homestead, a dinner out, a couple of morning breakfasts for Papa, and two medical appointment kept each day full, all in addition to our work schedule.  Our intentions for this evening were to meet a group of friends for dinner and a play.  Honestly I was tired and could have put on my own relaxing clothes and turned in for the evening, but I had heard the program we were going to attend was spectacular.  I was happy I made it home early and figured after a quick rest I would be as good as new.  But, things don’t always turn out as we intend; I never got my rest.

I walked into the house and Papa was not downstairs watching TV.  I thought great; he remembered our plans and was getting ready for this evening.  After a quick glance upstairs and seeing a light on, I walked into the kitchen thinking he would hear me and be down shortly.  It was beautiful outside; I opened the doors and windows to let in some fresh air and turned on the TV.  I took my time preparing a snack for Papa and myself, washed few dishes and put some things away.  Papa still had not come down and realizing I had not heard any movement from upstairs I thought I better go check on him.

“Good Afternoon, are you getting ready for tonight?” I called as I walked towards the stairs.  Silence.  Confused, I started walking faster and said a bit louder, “Hey, how was your day?”  Not a sound in reply.   I am certain my heart started beating a tad bit faster.  I was silently admonishing myself for not checking on him the moment I walked in the door instead of enjoying the 20 minutes of quiet time to myself.   I quickly looked in Papa’s room, the bathroom and hurried back downstairs to look through the rest of the house.  He was not inside.  His car was parked in the driveway and he was not in the yard.  I looked up and down the street and did not see anyone.  Where in the world could he have gone?

Ok, I thought, I should think like Papa.  It is a warm and sunny day; maybe he went for his walk to get his steps in.  I quickly glanced up and down the street and not seeing anyone I did our quick loop around the block the opposite way thinking I would soon see him coming.  Nothing.  Back at the house I now ran upstairs and checked for his phone, it was sitting on his shelf right next to the charger. Now I was not only worried about where he was, I was irritated that after all of our talking he did not have his phone with him.

I was beginning to panic.  I ran back outside for another look quick on our street and after not seeing anything I went to get my keys.   Driving will be faster, I thought; maybe he walked farther, maybe he walked the mile to the 7/11 to get a Slurpee.  I left the garage door open and drove around the block again and after not seeing anyone on the sidewalk I make the turn to drive up the hill toward the main road. As I was turning I saw Doug heading in my direction coming home and I was able to take a breath.  I stopped in the middle of a four-way intersection and hollered over to his car, “I have been home for an hour, Dad is not home.  I don’t know where he is!”  Doug just looked at me, I was not sure he could hear me with the traffic so I turned the car around to follow him home.  Together we could make a plan.

Doug asked me where I was going and when I said to 7/11 he shook his head.  He had just driven that way and did not see anyone.  He didn’t think that Dad would walk that far for a Slurpee by himself, and asked me if I checked with the neighbors.  I said no and would do that as soon as I checked the house again.  Frantically running upstairs calling “Hello, hello, where have you been?”  Complete silence.  I ran back down to the driveway only to see Doug standing across the street talking to our neighbor and could hear him say, “OK, just make sure he is home shortly we will be leaving at 4:00”.

Papa sauntered home a short time later and said I made friends today.  What is wrong?  What are you doing home so early?   He was proud of himself for going over to the neighbors by himself and had spent the last couple hours talking with them.   Once we had found him, we were proud of him too.

My first mistake was trying to think like Papa.  It saddens me to realize that my thoughts were what I had hoped he would be thinking, they were not his feelings.    Doug was right; he would not have walked that far alone, even for a treat. Papa will go on a daily walk with us because he knows that is what we want him to do, but it would not be his choice.  He will continue to talk about a time when he would walk for hours every day but those days are long past.  He dresses and put his Fit Bit in his pocket each morning as a symbolic reminder to walk, but he will probably never exert himself on his own again; he will only walk because others think he should.  He will walk to please us.

Mistake two, thinking he will always carry his phone.  I brought this up to him when I saw him, I only need my phone when I drive somewhere, and besides, the battery is dead.  I mentioned he should always carry a phone, just like we do.  I said the phone is sitting right next to the charger and wondered why he had not plugged it in?  I haven’t driven.  Honestly he probably would not have heard the phone ring to answer it anyway, but it would have given me peace of mind knowing he could call us if he needed to.

Papa’s dementia is a disease that is slowly eating away at his memory.  He knows only what he knows.  He knows the habits and routines he has done for years and the memories he strains to remember by repeating them each and every day.  While we may be trying to teach him new things, new behaviors and new routines he will forever need constant reminders.  Constant.  He will follow along to appease us, but our thoughts probably will never become cemented into his memory.  They will not become his thoughts.  Without daily prompts he they will very quickly fade.

Lesson learned:  Remind Papa every day that his family loves him, and he needs to put a charged phone in his pocket every morning just like his Fit Bit.  And even if he doesn’t hear it ring, if we call enough someone else is bound to hear it!

Breakfast at McDonalds

Papa had not driven in VA; in fact, he had not driven since we left Arizona.  He woke up this morning and decided today was the day; Papa was going the to Golden Arches for breakfast.  McDonalds had been his hangout in Sun City, he would frequent the restaurant several times a week just to have a cup of coffee and shoot the breeze with other old timers.  While I informed him that the clientele in our local McDonalds would probably be different we figured it was a close trip, what could happen?

McDonalds is only 2.6 miles from our house and is a straight path once he left our subdivision.  I had already put both McDonalds and our home address in the GPS, I had also written turn by turn instructions both to and from the restaurant.  We discussed bringing his cell phone and how to use the contacts in it.  I reminded him that he has our phone numbers on a business card in his wallet as well and he could call us at any time.  Papa thanked me and said he had his coupons and was ready to go.

Papa did not make it for breakfast that morning.  He drove over 50 miles and ended up at A McDonalds, just not THE McDonalds we had given him directions to.  He walked in, ordered lunch and sat and chatted with another gentleman in the restaurant while he pondered how he was going to get home.  Fortunately he lucked into a more direct route home and realized how far out of his way he had taken to get there.  (He insists he followed my instructions home, but considering they were for another address I am not sure how that is possible.)

I arrived home from work early that afternoon anxious to hear how his outing went.  Imagine my shock when I heard how far he had driven, and after he finished his story I calmly asked him why he hadn’t used the GPS. His reply was I don’t know how to use it, Nana operated that.  WHAT!?!  We had discussed that it was programmed and he thanked me.  Again I made the mistake of assuming he knew how to work the GPS.

Papa learning to use the Garmin
Papa learning to use the Garmin

Luckily we had a free afternoon.  Papa and I got back into his car and we started with the basics.  Plug in the GPS; turn it On; wait for it to turn on; push Where To; push Favorites; push the location you want; push Go; wait for it to register your request; then once the map shows up follow the instructions.  We drove to McDonalds and back listening to Garmin give him directions.  This is pretty easy.  Papa currently has two items saved in his GPS favorites, and he now knows how to use them.  He also has written instructions for the Garmin just in case he forgets.  He has his freedom.

Two important lessons were learned today.  First, Papa is not going to offer information, I will have to work at asking very specific questions; and second, his coupons should be kept in an envelope on his dashboard so he doesn’t forget to use them.

Sharing the (Shirts) Peace

New routines are nothing more than consistency.  It has only been a few weeks, but Papa is doing well with some of some of our practices and is slowly making new habits of his own.  On Saturday evening before going to bed he picks out what he will be wearing to church the next morning and checks with Doug to make sure it looks ok.  This Saturday was no different.

Sunday morning came and I made breakfast for the two of us while Doug was working out.  Papa was running a bit late so when he came down and asked me how he looked I said, “Great!  Time to eat,” after all Doug had approved his attire the night before.  Papa ate, Doug finished his workout and got ready, and we raced out the door.

Papa enjoys church, but he really lights up each week when he is allowed to wander up and down the aisle sharing the Peace with others in our congregation. He has felt comfortable and fit right into this routine from his first visit to our church.  He is able look closely at adults as he shakes their hands, and say hello to most of the children in our congregation.  My hope is that this is helping him to recognize a few new names and faces.

This morning as he was walking back to our pew Doug and I looked closely and realized he was wearing a pajama shirt.  How could we have missed this???   We both giggled and hoped that it was close enough to a casual shirt that maybe no one would notice.  Doug glanced over several times during the rest of the service and whispered back to me that was not the shirt they picked out last night.

Papa laughed on the drive home when we explained he was wearing a pajama shirt.  He said the other shirt didn’t fit when he put it on this morning so he picked out something similar.  Both shirts were blue, long sleeved and buttoned up the front; in that respect they were similar.  And although one was found in his dresser vice hanging in his closet he figured it had pockets in it so it could be worn as a shirt.

I am not sure how many people actually noticed what Papa was wearing, but one member of our congregation happened to make the comment that his wife dresses him also or he would walk out of the house wearing pajamas.   I will definitely pay more attention now when he asks How do I look?

Once we were home we asked Papa where the shirt was that they had chosen for him to wear today, there is no sense keeping a shirt in his closet if it doesn’t fit.  He pulled it out of his closet and after careful examination Doug realized it was his size, and was put back into his closet where it belonged.