Tag Archives: Caregiving

Papa is Home

On January 20, 2014 I published a post entitled Home:  They say that Home is where the Heart is.  I cannot imagine the feeling of having your life was turned upside down all at once.  In the beginning of this year (2014), Papa not only lost his wife of almost 59 years, he left his comfort zone: his home, his friends, many of his belongings and much of his independence.  He faithfully trusted us knowing this was the right decision and left the warm climate of Arizona, to move across country to a much cooler locale.  I mentioned that each day I see gentle reminders in his behavior that shows he is more comfortable and we are hoping that with consistency he will truly feel at home.  And then there are times as we are sitting in the family room and watching TV that I see him gently caress Nana’s side table and I realize that his first home will always be where his heart is, with Nana.

Wayne and Geraldine
February 12, 1955

 

On March 2. 2017, Papa truly went home.  As he closed his eyes to rest after his mid-day meal he drifted off to eternity to be with the love of his life.  He left this world in the most tranquil of ways.  It was peaceful, just like Papa was peaceful and loving and kind and I cannot imagine a better way for him to end his days on earth as he moves into the eternal world.

 

 

My chronicles of Papa are not done.  I have hundreds of loose sheets of paper for the times I just grabbed whatever I could write on as he was talking.  I have emails I sent to myself or notes on my phone and computer when paper was not available.  And I even have some video of him telling me things when he was talking too fast for me to accurately put his words onto paper.  I look forward to having Nana’s side table in my office and when I am at a loss for words, as I am tonight, I can gently caress that table just as Papa did hoping that it will bring me closer to him.  I love you, Papa.

Please share your Papa stories with me.  I would love to make sure they are included in our collection.

 

An Unexpected Call

We still have a home phone but like many other people both smartphones and Bluetooth are conveniences I just can’t imagine living without any longer.  Not a day, probably not an hour, goes by that I don’t use my phone to take a call, answer a text, add to my grocery list, search for directions, check email, find an address, update my calendar or, during baseball season, to follow my Washington Nationals.  So, while my phone may be used for many things my actual cell number is provided only to people who need it so I try to answer each call as it rings even if it is not a recognized name that shows up on my caller ID.

I was driving with two dear friends on our way to dinner the other night when our casual talk and Christmas music was interfered with an incoming call.   I paused briefly not recognizing the number, threw etiquette out of the window and with a flick of my thumb on the steering wheel I answered the call with a cheery hello.  I was not prepared to hear the response, “Hello Sandy, this is Annette, a Hospice social worker from Mary Washington Hospital, are you able to talk?”  I calmly said no, I will call you back in the morning, and we cordially ended the call, but my mind started wandering.  I drove several miles before I said that was unexpected and tried (somewhat ineffectively) to put it out of my mind until the next day.

Papa during my visit yesterday, “Look at this Christmas card with my Great-granddaughters.”

I have only had limited experience with hospice or palliative care but know another friend whose father is currently near the end of his days.  Thinking about them I called Annette back at 8:00 the next morning, but even with a night of thinking about the odd call regarding Hospice care it didn’t make much sense to me. Papa does not have a terminal disease, why would they be calling me.  Papa is in a wonderful environment with caring and compassionate staff looking after his every need, what could a Hospice program do for him?  I was wrong, it makes perfect sense, but even after the call I really didn’t understand the importance until I had checked in on Papa later that morning and then compared it to Doug’s visit today.  I am happy to report Papa was bright and alert for my visit yesterday morning!

My first misconception was thinking that once a person is referred to Hospice they have days or weeks or possibly up to six months to live.  Hospice is for the end of a person’s life, and as much as I don’t want to think about it Papa truly is nearing his end of his life. Palliative care is to help improve the quality of care for patient and their family for the time they do have left, even though there is not a number attached to Papa’s time.

Secondly I did not consider Papa’s memory loss or debilitating neuropathy as a terminal prognosis, but in actuality his weight loss and malnutrition are.   The nurses and staff at Greenfield caringly help to feed Papa but that does not mean his body is absorbing the nutrients as it should be.  Papa’s body is starting to fail him just as his mind is not always working in the present time.  Sadly, Papa’s memory was not as sharp today while Doug visited and he had a hard time recalling people and places, even to the point of asking when they brought all of the tables into the dining room he has eaten every meal in for the past year.

Papa is not living in a traditional home environment any longer, how do we fit in the Hospice picture?  The misunderstanding that Hospice is solely for patients and their primary caregivers based in their home is also wrong.  Hospice concentrates on the comfort of a person and their family, not the cure of a disease, but this care can happen anywhere.

It is a blessing to know Papa will have another team of people looking out for his best interests.  Sadly, many people do not receive hospice care until the final days or weeks of their life and miss out on helpful support and quality time with their loved ones. I am thankful that others care about Papa let us know that perhaps the time for is now.  Hospice is a community, another resource we can all use to assure that Papa is happy and comfortable on both his good times or more troubled periods for all of the days, months or even years he has left.

This video was taken during Doug’s visit today.

 

 

 

 

Pi Day

I am not sure if Pi Day, 3.14, a pseudo holiday with a cult like following, is more relevant to math geeks or bakers but I definitely fall into the later group. Pi day is just one reason (not that I need a specific motivation) to start digging through cookbooks looking for a new pie recipe. This is one of the silent agreements Papa and I have worked out, I bake pies and Papa eats them.   Period.  Papa has never turned down one of my pies.

Several months ago my brother sent me The Taste of Tradition, IMG_7726a small 24-page cookbook that Borden and None Such put out in the early 1980’s devoted entirely to apples, raisins, currents and spices, aka mincemeat.  I had no idea that None Such Mincemeat had been manufactured for 100 years prior to the the printing of this small cookbook, and decided as I was looking through it for a new pie recipe for Papa that I would try one of the time-tested and traditional recipes from another century.  Apple Streusel Mince Berry Pie.

Papa doesn’t understand π and will be the first to say, I wasn’t too good at math.  He doesn’t know what the circumference of a circle is or why someone would ever have the need to figure that out.  But he can look at a round pie and will tell you that the bigger the pie is the bigger the circumference must be.  And the bigger the circumference is the more it is filled with whatever he likes, chocolate and mincemeat being his all time favorites.  I knew Papa would not be disappointed in our Pi Day flavor, however I neglected to reason that by making small pies, they have a smaller circumference and what appears to be less actual pie for Papa to eat.  We all laughed noting that his Papa math was spot on, his individual pie looked smaller than a full size slice, even though it wasn’t.

Apple Streusel Mince Berry Pie
Apple Streusel Mince Berry Pie

As a baker before a math major, I made the decision that providing a fresh pie on 3.13 was more important than a “day old” pie on 3.14.  The decision turned out for the best that Papa had his Pi Day pie a day early, today has been a long day for him sadly without any opportunity to eat.  Unfortunately, Papa was rushed back to the hospital during the early morning hours  and has spent all of today, all of March 14, all of his Pi Day being transferred between two hospitals with another pulmonary embolism.

Papa has settled in his new hospital room, is stable and in good spirits and we are hoping he will be back to his regular routine in a few short days.  Before he settled into his bed, he able to pick whatever sounded most appetizing for dinner and chose his favorite standby, a peanut butter and jelly sandwich and, unless they are able to find a slice of pie in the cafeteria, some chocolate pudding for dessert.

 

 

Sing-A-Long

Yesterday afternoon I went to visit Papa and was welcomed to a group of fifteen seniors watching and singing oldies on youtube.   They were fascinated that they could mention the name of any musician to the activity director and she would have a video clip playing on the large screen TV in just seconds.  The group was singing and twisting along to Chubby Checker performing The Twist, or Frank Sinatra singing My Way.  They were tapping their feet as Fred Astaire and Ginger Rodgers were dancing Never Gonna Dance from the movie Swing Time and rocking along to Judy Garland in The Trolley Song from Meet me in St. Louis.

Papa was released from the hospital this week and transferred back to the rehab facility he has been in for the past month.   An hour after arriving and settling in, Papa wanted Doug to push him out to the activity room but unfortunately by the time he was processed and dressed the other residents had already retired into their rooms for the night.  It was too late, everyone was asleep so he had someone push him back to his room and went to bed.  I can only imagine Papa woke up the next morning ready to be in the midst of a group.  Maybe now it makes sense that while he was in the hospital he kept wanting to get up and out of bed.  He kept asking who was in the hall way standing around the nurse’s station.  Did he think he was still in rehab? Who is out there?  Isn’t that one of the Fish girls? Why are we here? Who is in the hospital? Shouldn’t I be out there?  He was confused about where he was and didn’t want to miss anything.

Wayne and Frank, 1994
Wayne and Frank, 1994

Papa and one other elderly gentlemen were in the midst of a circle of women singing, they were enjoying pushing their memory to recall music and movies they saw fifty, sixty or even seventy years ago.  I walked behind the director and mentioned she should look up Papa’s older brother.  The next song on the TV was Frank Marocco playing After You Have Gone on the TV.  That is Frank, that is my brother! He has played the accordion since he was six.  It was fun to step back and listen to the comments all of the women were making.  “He is handsome”, “He’s good”, “I like the accordion”, “Do you play?”, “You sure look like him”.  It was the first time I saw Papa open up and talk, telling the group his brother played with Les Brown and toured with Bob Hope.  In this moment his mind and his memories were strong and clear.  The activity director jotted down Frank’s name and promised to look up more videos for their next impromptu concert.  Then one lady, whose social filter has become as worn as Papa’s, blurted out, “there is no singing in this, can’t we find something to sing along to?”  Allison will be happy to hear they ended with Be My Baby by the Ronettes.

Papa is still confused, twice he offered to give up his wheelchair if I wanted to sit down, and when I put on my jacket to leave he asked me where I was going.  He just looked up at me when I said I was going home.  But isn’t this your house?  I don’t understand how a mind can be so clear about some events and so foggy on others.  How can he ask me if we are home and not wonder who all of the other people living there are?  How can he not remember he doesn’t have the strength to stand or walk or know where he is eating his dinner.  How can he have such an inability to perceive social cues but remember every word to Somewhere Over the Rainbow even if it is sung by IZ (Israel Kamakawiwo’ole) and not Judy Garland.  Papa was not the only one who stopped singing long enough during that video to say, man that guy is big!  How can a mind pay such horrible tricks on a person?  Hopefully a few nights of sleep will bring back just a bit of the clarity he seems to have quickly lost during his hospitalization.  But even if his mind doesn’t clear, I hope that he never forgets the lyrics to Over the Rainbow and that he believes that the dreams that he dares to dream, both day and night, really will come true.

A private family concert, Twentynine Palms, CA, 1994
A private family concert, Twentynine Palms, CA, 1994

Frank Marocco:    https://www.youtube.com/watch?v=RrVidWn75RQ

 

 

I’ll be Home for Christmas

Papa came home on Christmas.  Between the hospital and the rehab facility he has been away from home for over a month.  He was excited to come home to see two of his granddaughters, enjoy a home cooked turkey dinner with all the fixings and watch some of his favorite TV.  He apologized profusely for not going shopping for us, as if he couldn’t fit it into his schedule, but of course we were just thrilled to have him spend the day at home with us.   We already miss the routines we have built over the past couple of years.

I am not sure who was more naïve on the transport.  Papa thought he was coming home to stay for a while, sadly he was not.  We thought it would be easy bringing him home but unfortunately it wasn’t.  It was not just the logistics of picking him up and transporting him, knowing it would take at least two people, it was the reality of knowing this will not get any easier.   Papa’s neuropathy and lack of physical activity has left him unable to walk… too weak to pull himself up, too unstable to stand or move at all unassisted. But the hardest part for all of us was realizing Papa honestly forgets he cannot move on his own.  He has fallen in the rehab facility many times over the past three weeks however we thought that was the proud Italian in him not wanting to ask for help.  The moment Doug and Christina pulled into the driveway Papa unbuckled his seatbelt and started opening the door ready to walk in the house like he has almost every day for the past two years.  He just forgot.

Christmas 2015With a little ingenuity using three people and a desk chair we were able to get Papa into the family room where he made it to the closest possible seat on the couch and sat.  There he sat.  All day.  He smiled, he laughed, he told stories about different homes he has lived in and he opened his Christmas gifts.  He chatted with his family on the phone, who hopefully didn’t believe him when he said I’m getting around pretty good.  He wanted to try going up to the dining room but we decided on a cozy dinner in front of the Christmas tree and a football game was probably our safest bet for his first outing.  It was a great day.

Sadly, just a couple of days after Christmas I received a call that Papa was being brought to our local hospital for pain and swelling in his leg.  I assumed he had fallen and rushed to meet him in the Emergency Room.  We were not there long before they transferred us via ambulance, during DC rush hour traffic, to INOVA Fairfax Heart and Vascular Institute.  Papa was diagnosed with severe, multiple deep vein thrombosis and pulmonary embolisms and unfortunately his head injury last month complicated matters by not allowing the most aggressive anticoagulants.  We spent the next several hours in the ER quietly watching as a team of 8 doctors debated on the best course of treatment for Papa before they finally brought him up to the CVICU.

In the past month Papa has been in the hospital twice now totaling over two weeks, and at a rehab facility for several more weeks, however seeing him today was the hardest on me. We know Papa forgets, we can remind him.  We know Papa likes to be comfortable and is not afraid of telling people if he is not so we do our best to make him feel relaxed.  We know Papa is a bit confused about the many different rooms and hospitals he has been in, and doesn’t quite understand when he will be able to move to a permanent location so we assure him we will be there for him no matter where he is.  And we know Papa likes to look good and even when he is in pain.  In fact, once he was settled in his latest room and I asked him if he wanted me to bring him anything and all he wanted a comb and his Vo5 (he does have great hair).   But today was different.  I have never seen Papa as incoherent as he was today.  He has been poked and prodded hourly for several days and the ICU psychosis has set in.  Papa is sleep deprived, uncomfortable and in a strange environment. It broke my heart when he could not answer the most basic of questions, even though he tried his best to cover.  What is your name?  Wayne.  Where are you? In a bed.  Where is the bed?  In a room.  Where is the room?  In a church.  Maybe thinking you are in a church isn’t such a bad place to be.

Merry Christmas!
Papa has a shaky hand with the selfie stick!

Yes, Papa came home for Christmas and in trying to engage him to talk to me today I showed him some of the photos we took while he was home.  He looked at them and asked, where’s Ma?  This is the first time he has asked that question and it occurred to me that maybe he really didn’t come home for Christmas after all.

Mincemeat Pie

IMG_7047Papa fell walking up the stairs on Tuesday.  Recently we have been following him as he walks up or down the stairs but on this one occasion I walked in and he was comfortable in his chair so I continued upstairs after saying HI not knowing he would decide to follow me several minutes later.  My heart stopped as soon as I heard him tumble backwards hitting his head on the tile floor.   People who understand me and my beliefs will know I always try to look for the positive in every situation.  I will update everyone on Papa’s prognoses, we still do not know where Papa will be or what will happen tomorrow, but this Thanksgiving holiday I am thankful for:

  • That fact that both Doug and I were home when Papa fell, I cannot bear to imagine if he had been home alone.
  • That Papa never lost consciousness and was able to move, even though we didn’t let him. We didn’t want him to see the blood.
  • The 911 operator, who quickly listened to me and called in units to our house.
  • The seven paramedics who were able to squeeze into our small hallway and put a compression dressing on his head wound, strap him to a back board and carry him out. It was like clowns tumbling out of a small car but they were coming into our home…there were two, then four, then five and when I could not imagine any more help the sixth and seventh paramedic walked in.
  • Our wonderful neighbors who came over to see what happened and if they could be of any assistance and have continued to checked on him daily. You guys are the best!
  • The crew chief who let me ride in the front of the ambulance transporting him to our local hospital.
  • The thrill of watching I-95 rush hour traffic part like the Red Sea as the experienced driver rushed us to the hospital.
  • The nurses and doctors who assessed his situation and stitched his laceration before sending him for an MRI. I have never seen so much blood or so many large clots and must have gasped and stepped back against the wall at one point.  The doctor laughed and assured me they were just clots.  The entire scenario made me think of our dear friend Dr. Dennis and I now truly understand his blood injury phobia.  I could tell as he walked in that Doug had the same thought when he saw the wall peppered with bright red streaks running down.
  • The decision to transfer him to a larger facility with a Trauma ICU and a neurosurgeon on hand if needed when they noticed a small internal bleed on the MRI.
  • The two sweet paramedics who transported him on his second ambulance ride for the evening, with Doug along for this ride.
  • The amazing INOVA Fairfax Medical Campus. I cannot find words to describe how beautiful this new state of the art facility truly is.
  • My friends who kept texting me to see how we were, where we were, and what we needed.
  • The fact that I can laugh at myself at 3:30 am as we were leaving the hospital after Papa was settled in his room and I was attempting to put my parking slip in an ATM machine before Doug found the parking kiosk.
  • The medical team in the Trauma ICU. Cheerful and attentive nurses who called Papa handsome ad told him he was their favorite patient.
  • My close friends and our church family who have called and sent messages offering their thoughts and prayers.
  • The cards that Will and Annalee made to brighten Papa’s day.
  • My entire family, who has called and texted numerous times to see how Papa is doing, I love you.
  • IMG_7039The fact that Papa was transferred to the Intermediate Care Unit (a step down unit) on Thanksgiving evening so we were able to bring him a home cooked Thanksgiving dinner. We could not coax Papa to eat more than a bite or two of his meal, but he smiled when he saw what we brought him for dessert.  Papa often talks about how his mom used to make him mincemeat pie.  Not many people like it, but I do.  Why don’t more people like it? You can’t find it anywhere.    We have had a running joke for years, what is it made of?  To which I would respond little minces of course.
  • IMG_7048With everything that happened over the past week, Papa was most thankful for his mincemeat pie. I will make sure to keep baking mince pies whenever he asks.

Endnote:  I am also thankful for Allison and Christina coming home, the dynamic of our home changes to a different excitement as you bring up various discussion topics, sometimes I believe just to hear your dad’s responses.  For anyone who watches SNL, I only had to pull up Adele’s Hello for Doug to hear on one occasion.

 

 

Autumn is here but we are not ready for Fall

Leesylvania State Park, 2015
Leesylvania State Park, 2015

On our way to Papa’s physical therapy appointment this afternoon he stumbled and slowly, almost gracefully, fell down in our driveway.  I ran around the car and was able to get him up on his knees next to the car but could not lift him to his feet.  I told Papa to hang tight and I would get Jim.  Ya, Will’s Dad can lift me.  Frantically knocking next door I realized Jim was not home.  Seeing another neighbor’s orange car, I ran across the street hoping Juliette’s daughter was visiting, but she was not home either.  As the light drizzle was turning back into rain I hurried back across the street hoping to get us inside before it started pouring.  I took a deep breath, rolled down the car window, turned Papa around and told him he was going to have to pull with me.   This is ridiculous I don’t know why I am so weak.  Neither do we Papa.  We counted and pulled for several minutes before I was able to get him up to a standing position.  Papa looked at me with sad eyes and diligently started getting back into the car for PT.  I laughed and told him no way, we were going inside.  The poor man was covered in mud but I told him our 15 minutes of pushing and pulling was enough PT for the day.  I might have imagined a little bit of a skip in his step as he made his way back inside, but I know that was not really the case.

I weigh a lot, I didn’t mess you up did I?  No, Papa, I am ok.  I forgot, you got two packages today, one looks pretty big.   Thanks, they are your new shower seat.  WOW, that was quick.  Papa also fell twice this past weekend.  He stumbled once near our front door and the second time he slipped in the shower.   Doug was home both times to help him get up and fortunately other than a bit of wounded pride he was not hurt.  Papa really does defy gravity and goes down slowly if he loses his balance.  What worries us is that these are the several times we know about.  What happens while we are not in the same room with him?  What happens during the day while we are at work?  What happens if in his next fall he goes down harder?

We have seen a significant and steady decline in Papa’s stability for the past two months, and have done everything we can to find out what is going on. Since mid-August in addition to twice a week physical therapy we have taken him to his:

  • Primary care doctor. This was after we witnessed his first fall which produced two black eyes.   He had a complete set of labs, an ultrasound on legs to check for any clots, an MRI to head, an x-ray to shoulder, and a referral to his neurologist.
  •  Audiologist.  His hearing aid was not working properly because his filter was put in backwards.  Huh, I wonder how that happened?
  •  Neurologist.  MRI to his back to make sure no impingements, a referral for PT, and a referral for nerve testing.
  • Ophthalmologist.  A regular scheduled glaucoma follow-up.
  • Neurologist.  Additional labs and nerve testing to show how severe his neuropathy truly is.
  • Primary care doctor. A follow-up to go over the labs showing nothing significant and a cardiologist referral.
  • Audiologist.  I can’t hear the TV, can you?  This time a speaker needed to be replaced.
  • Cardiologist.  EKG, ultrasound to carotid artery, a 24 hour Holter monitor, and a referral for a tilt test next week.
  • Primary care doctor. No one believes me, I am dizzy.  It is difficult for Papa to explain if he is dizzy or if he is unbalanced.  I am not stable, I just don’t feel steady.  The room is not moving; I just can’t stand still.  This time his doctor discontinued several of his medications to see if that could possibly help.  Unfortunately, the first meds that are removed are medications to improve urination meaning he now has to get up more frequently to go to the bathroom.
  • Audiologist.  My hearing aid won’t stay in.   Papa loves Dr. Goodwine and Kelly, he would go in weekly if we took him, she changed the seal this time and promised to make a new mold if that didn’t help.

While It is extremely worrisome for us it is very confusing for Papa; What is wrong with me?  Why can’t they just fix it?  Can’t I take another pill?   He doesn’t want to hear it could be weakness from inactivity, or that he needs to continue to eat a balanced diet to keep all of his strength.  Maybe it is from my accident 40 years ago.   Maybe it’s my medications.  He doesn’t believe it probably won’t get any better.  He doesn’t always want to go to physical therapy but after 6 weeks he knows we aren’t going to back down so he despondently gets up when he knows he has an appointment.  Hopefully next week will be better.

Tonight after dinner I reminded him that a year ago we all went on a hot air balloon to see the shades of autumn, and showed him photos to jog his memory.  This past weekend we went for a drive to a state park several miles away to view the same colors.  Papa smiled, then looked outside and asked, what will I do next year?   I couldn’t answer, I have a feeling there will be many more falls between now and then.IMG_6906

I Shouldn’t Have Looked

I often have to remind myself not to second guess Papa’s actions, not to try to figure out why he says certain things or most importantly not to take something Papa might say or do personally.   Papa returned home from his five weeks of summer travels considerably aged.  He has been cold, tired, not eating well and having a difficult time walking, he is completely unmotivated.  His walking and balance have deteriorated to the point he cannot walk down the hallway without holding on, and walking outside on a sidewalk has become downright dangerous without holding on to something or someone.  Papa is not in any pain but says his feet feel mushy or unstable.  He worries what people will think when they see him shuffling down the street alongside me and repeats several times as we walk our loop around the block that the neighbors probably think I’m drunk.  His daily ½ – 1 mile walks have resorted to me insisting he moves it before he loses it.   

FullSizeRenderVersion 2We noticed something was wrong shortly after we picked him up in Chicago and he stumbled down a couple of stairs.  The next day he fell in the shower and ended up with a goose egg on his forehead and one day later looked like he had been in the ring for a couple of rounds with Rocky.  In a week and a half we have taken him to  see his primary care doctor, in for x-rays, an MRI and labs even though he had a complete physical just days before he left for vacation.  We have taken him to the neurologist who will continue with another battery of nerve testing tomorrow and he will begin physical therapy later this week.  Throw in an eye appointment, a trip to the dentist, several baseball games and a walk around the Iwo Jima Memorial and Papa has not had much time to sit and home and watch his westerns or nap.Version 3

Papa showers or says he bathes before church or his various doctor appointments, and he mumbles his dissatisfaction when we have several appointments scheduled in a given week, such as this week.  We hear the water turn on and run for a few minutes but do not hear any movement in the bathroom during the “shower”.  No sliding of the curtain, stepping into the tub, or dropping the bar of soap, and what easily gives his ploy away is there are no wet towels after his shower.  Does Papa think he is fooling us?   His balance is off; can he even step into the tub now?  Is he worried about falling in the shower like he did a couple of weeks ago?  Or is he just being lazy and it is easier to put on sweat pants and say I ain’t dirty, I don’t sweat.  We need to remind him we have a walk in shower off of the master bath if that would make things easier for him, but will that be letting him know we are in on his ruse? IMG_6447 (1)

Yesterday I surprised Papa and was home by the early afternoon.  I smiled when I pulled into the driveway and saw him sitting on the porch.  YEA, he was outside on his own!  There was no prodding to get him out of his brown recliner.  No bribes.  I sat in the wicker chair next to him and asked him about his day.  What time did you get up?  7:30, I always get up at 7:30.  This is funny to us, because on days I work from home or on the weekends he will easily stay in bed until 9 or 10 o’clock.  To me it is backwards, why doesn’t he sleep on the days we are at work?   Papa’s morning routine might be confusing but it is consistent. We know we have to wake him up for early morning appointments or church but I can guarantee when I get home this afternoon and ask him when he got up I will hear 7:30, I always get up at 7:30.  Does he really get up then?  Does he know his schedule doesn’t make any sense?

I moved on to ask Papa what he had eaten that day even though I knew this answer, or thought I did.  We make sure he has options laid out before we leave every morning.  A banana and some prunes are always on the counter next to his coffee, giving him something to eat before he takes his morning medications.  We have cold cereal, oatmeal, or bagels ready for him to choose for his breakfast and his lunch is always prepared and in the refrigerator.  Of course we remind him, if anything else looks good eat it, and some days we come home and he tells us he had peanut butter and jelly or we see PowerBar or ice cream wrappers tucked in the trash and know he filled up on something else.  We know he isn’t going hungry, or shouldn’t be.  I had a BIG bowl of cereal for breakfast. We chatted a bit more on the upcoming Nat’s game against the Cardinals, the beautiful summer weather and the neighborhood kids first day of school before I proceeded in to the kitchen to unload the dishwasher and start dinner.  I didn’t see his bowl in the sink, or his lunch dish so I peeked out the door and asked him where they were.   I put it in the dishwasher.  I don’t see it, what color it is?  Yellow.  I still don’t see it, the dishes were clean come show me so I can put the rest away.  Papa ambled inside slowly running his fingers along the wall and across the counter top before he reached down and pulled out a very small green bowl.  I laughed.  Papa you ate cereal in that,  I don’t think that bowl will hold a half of a cup.  Oh, I just had a couple of prunes.  I shook my head,  What about your lunch?  I wasn’t hungry, I don’t eat like I used to….  Papa didn’t dig himself in any deeper, he was not happy but he looked at me and knew what I was about to say.  He  sat down to eat his chicken pita sandwich while I finished unloading the dishwasher and lecture him on the importance of eating several small meals throughout the day.   I walked upstairs to answer the phone and he still had more than half of his sandwich left but by the time I was back in the kitchen, less than 2 minutes later, he was loading an empty plate in the dishwasher.  WOW!  Did you finish your sandwich?  Yes, I ate it all.  Jokingly I asked him if he threw it away, knowing I had only been gone a short time.  No, I didn’t throw it away, I eat fast. 

I gave Papa the choice of running errands with me and pushing a cart in the store or walking around the block.  I can’t walk.  Papa doesn’t know Uncle Leo from Seinfeld, but he sure sounds like him.  I am an old man.  I’ll walk tomorrow.  I need a break.  I can’t.  It’ll take me thirty minutes to change clothes. Papa knew I was not going to give in and slid his hand along the wall as he staggered up to change clothes.  I took pity on him and this once I gave him the day off. 

Before I left to run errands I did the unthinkable.  I looked in the trash and sure enough wrapped in a napkin was the second half of his sandwich.  I knew I would find it just like an unused  big yellow cereal bowl sitting in the cupboard , or a dry towel in the bathroom after his shower.   I knew he wasn’t telling me the truth.   Why can’t he tell me he can’t eat all of his meal right now, or just say I don’t like chicken, or I took a nap and forgot to eat?   Why can’t he say he doesn’t want to shower or it is too hard to step over the tub?  Has he lost some of his confidence to take a shower?  Does he not care about his hygiene and is holding on to his last sense of control?  Is he choosing not to eat or is he truly not hungry?  If he is hungry is it just too much work to walk up from the family room to warm up his breakfast or lunch?   I know that Papa doesn’t want to let us down.  He doesn’t want to be a burden to anyone.  Every night as we say goodnight he says, I don’t know what I would do without you kids. 

I can rationally say I shouldn’t take his words or actions personally, but sometimes I do.  I want him to be happy and healthy and active without us constantly pushing him.  I want him to spend time with each of his children, grandchildren and great-grandchildren.  I want him to call people to say HI or have the confidence he used to have and not be so quick to tell us he can’t or he is old and tired.  He is not letting us down, but today I think I let myself down, I should have kept playing the game, I shouldn’t have looked in the trash.

Packing for Camp

A couple of times each year Papa travels alone from the East Coast to the West Coast to be able to spend time with all of his family. Papa doesn’t like flying, but he needs to travel by air to be able see his children and grandchildren. We book nonstop flights with wheelchair assistance from DC to LA or San Diego and while he won’t admit to being nervous we can see in his behaviors that he is relatively anxious to fly alone. He even starts nervously scratching and will then blame the itch on the rain, or the sun or one of his medications. We try to make everything as easy as we can and this week created a checklist to help reassure Papa that he is healthy and cleared to travel along with making sure he is well packed and prepared for his adventure. Getting him ready reminds me of helping our kids to get ready for swimming or baseball camps, without quite so many doctor visits. Nana used to do all of the coordination and packing so even though Papa assisted us the last time it is not something that is engrained in his mind.

shoppingShopping: Although he has lost a few pounds and he often says, I am watching my figure some of Papa’s clothes just don’t fit like they used to. We took him shopping not only for several new shirts and shorts but a fresh supply of undershirts, shorty pajamas (boxer shorts), and socks for his trip. Papa typically does not like shopping but hat 3on this trip he was picking up things off the racks and asking us what we thought and didn’t once mention he wanted to sit down. It was a very successful shopping trip, even if he decided against a new hat. Check.

ultrasoundDoctor: Papa had a pulmonary embolism on a previous long distance flight and is now concerned he will get another one. He had a small amount of swelling in his feet last week so we scheduled an appointment to reassure Papa he is good to go. He also had a pre-emptive ultrasound done to make sure his legs are clear. He is clot free. Check.

ENT: While Papa was at his primary doctor he mentioned he was dizzy which led to an Ear, Nose and Throat referral. Papa has mentioned I can’t do that, I am dizzy for years; in fact he has had sporadic bouts of dizziness for the past 40 year since he was in a car accident and had a major head trauma. I notice that he seems to mention it if he is worried or anxious, or if he doesn’t want to go for our daily walk. Interestingly enough I still make him walk and as soon as we change topic his vertigo seems to resolve itself. But we took him in for this appointment just to make sure it was nothing new. It wasn’t, he is clear. Check.

Dentist: The dentist happened to have an opening for a cleaning this week so we were able to get him in before he travels. This created an Endodontics referral, but we let him know we have scheduled this follow-up for after his return. As long as he has clean teeth and is in no pain he is good for the trip. Check.

Subway: Papa said he was hungry and asked Doug if they could make a quick stop at Subway after they left the dentist. Doug wondered why he hadn’t eaten his lunch at home before they left.   What, you can’t eat before going to the dentist. Doug laughed at that and said it isn’t like swimming, Dad; it is ok to eat before you get your teeth cleaned. Huh was all Papa said before he ordered his turkey sub.

Foot Soak: Papa likes to periodically have a pedicure and his nails trimmed. He calls it his foot soak and was happy to have this done yesterday so he would not have to worry about asking someone else to take him while he was on vacation. Now if we could just figure out an easy way to put on his compression socks… Check.

FullSizeRenderHaircut: The barber shop is located next to the nail salon. Papa not only had a quick cut, he also had his eyebrows trimmed; it was truly a “Pamper Papa” day! He cleans up great! Check.

VO5: Papa says he has been using VO5 since the mid 1950’s, and because this is the part of his memory that is the strongest I believe it. Is it just us or is VO5 hard to find? After looking at several stores without success Papa’s granddaughter Christina took him shopping today and they were able to find it at their third stop. Perhaps we should go back and get a few extra boxes. Check.

Medications: All of Papa’s medications come through a mail order pharmacy, except for his eye drops which we pick up locally at our Target Pharmacy. I had ordered ahead and prepared weeks’ worth of his meds for the trip, however the eye drops can only be picked up every 30 days. Even though Papa has a 30 day supply he does not understand why he cannot pick the next bottle up early if the doctor has already sent in a prescription. I went to the pharmacy with him on Monday and we picked up one of the drop prescriptions and explained that for insurance he has to wait to pick up the other one. He asked Doug to take him in on Tuesday and this time the pharmacist explained he had to wait until at least Friday to pick up the prescription (Papa leaves Thursday) but he can go to any Target Pharmacy after that for pickup. Today he was running errands with Christina and had her swing by Target to check once again and hopefully the third time is a charm and he remembers he has enough drops for several weeks and can pick that last bottle up in California. Check.

Audiologist: Papa got new hearing aids months ago and this week we noticed he was saying Huh or What quite frequently. We asked him if his hearing aids seem to be working ok. I think the treble is out. He also says this when he is stressed, but to be on the safe side we wanted to make sure his hearing aids were correctly calibrated for his trip so we schedule a quick visit to the audiologist for an adjustment. Dr. Winehouse also supplied him with several months’ worth of batteries and filters for his hearing aids. Check. Check.

packingSuitcase: I don’t know what I need, Papa said in frustration. Doug and I pulled out what we thought he might want to bring for the trip and placed it on his bed and hung what we thought would be comfortable for the plane ride and asked him to check. After exchanging one pair of jean shorts for another he decided everything looked pretty good, except for shoes; we had one pair of shoes and one pair of sandals and his slippers. What do you think, should I wear my white shoes? These shoes are his most comfortable only because he has worn them the most and they are conformed to his feet. They are 1 ½ years old and even though he convinced his sister on the last trip they were at least 10 years old and he needed new shoes he always chooses this pair first. We have since been back to New Balance to get several additional pair of 11 ½ EEE shoes in both black and tan so he has shoes in various colors and for all occasions. We told him to wear whatever is most comfortable. Shouldn’t I bring more shoes? Sure, what do you want to bring Papa? What do you think? Can’t I just put more in my suitcase? He doesn’t have a magic bag like Mary Poppins but we fit the tan shoes in his bag along with the sandals and slippers. Check.

shopping 2Snacks: Papa has an early flight but we want to make sure he has some snacks for the plane. We packed a bagel, a sandwich and a piece of fruit, he always carries a PowerBar or two with him, and of course something chocolate flavored for dessert. Chances are he won’t eat this apple but he will have some Chips Ahoy or Brownie Crisp crumbles on his shirt when he lands. He won’t go hungry. Check.

Bank: We provided Papa with a summary of his accounts and their balances for his wallet so he knows what is where and his response was the usual what do you want me to do with that? He went into the bank today and withdrew cash for the trip and then proceeded to spend some of it on his VO5 and other items he picked up while shopping almost as if that money was going to catch flame and burn a hole in his pocket. Christina diplomatically reminded him that he might want to save his cash for the trip and use his debit card for his last minute local purchases. But he has cash ready and tonight we will make sure he has a couple of smaller bills to tip the wheelchair driver at the airport. Check.

ROMEO: Papa was able to fit in a Retired Old Men Eating Out (ROMEO) breakfast with his church pals this morning before he flies. There is nothing like fellowship and a big breakfast at Bob Evans to curb the nerves. Check.

It has been a busy week. We have fit all of this in along with a couple of trips to Nat’s Park. Papa is exhausted from all of the preparations and he isn’t even there yet.   Doug and Christina will take Papa to the airport bright and early tomorrow morning for his flight to San Diego but I have the feeling it is going to take him a couple of days to settle in and get used to another house, another bed and different channels on the TV.   After that, he will have a great trip, and packing to come home should be much easier.

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