Tag Archives: Adjustments

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.

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.

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!

 

Freckles!

Be optimistic! Don’t worry be happy! Find the positive! If it is important to you, you will find a way! Every cloud has a silver lining! The best is yet to come! When one door closes another opens! You are not alone! The sky is the limit! Never give up! Freckles!

We know these phrases and many other like them. There are the cheerful people who use them, and then there are the individuals that the phrases are directed at. Typically you are one or the other, an optimist or pessimist or in my husband’s opinion, a realist. But I typically find realism is just another negative attitude, a fancy word for a person whose view tends to border a more pessimistic perspective.

From a very young age one of our daughters had a lot of freckles concentrated on her left arm. Right or wrong, I attribute this to where she sat in the car and how the sun shined on her fair-skinned arm during our countless hours of travel while living in the desert. I can remember many people asking her what was wrong with her arm or what caused that. Allison always answered positively, “Freckles!”, but in my mind I always found it a bit odd that someone didn’t know what a freckle was, or even a couple hundred closely spaced brown spots on a young girls arm.

I am an optimist. I try to find the good in everything, even if I have to look deep to find it, and I found myself using many of these positive affirmations over the past couple weeks.

Don’t Worry be Happy is one of Papa’s favorite anthems. He can remember a four-year old Nathan singing the Bobby McFerrin song to him back in 1988 as Papa was on the down side of his working years and dreading working outside in another cold Chicago winter. Papa often says it, and will smile anytime he hears someone say it back to him. I have received emails and calls asking about Papa over the past month, and I want to thank you for your concern. Papa is still with the West Coast Maroccos’, and will hopefully be cleared to fly to Hawaii for a family vacation with them in mid-August. Regrettably he suffered from a pulmonary embolism after traveling for extended periods of time as he made his way across the country. This meant not only a quick hospitalization on his vacation, but being followed by a second set of cardiologists, neurologists and primary doctors, which in turn created a cancellation of medications by one set of doctors and reorder of all of his medications by current doctors. Fortunately Papa just goes with the flow of whatever is happening. He is enjoying being entertained by his four youngest grandchildren in sunny California, and a backup plan is in place just in case he doesn’t get the all clear to fly to Hawaii. Don’t worry, be happy!

Every cloud has a silver lining. He didn’t need to hear it from me, but I recently mentioned that to one of my brothers. Scott and his traveling buddy had a trip Down Under planned for the end of this month but decided to cancel it at the last minute for his family. Just like that, he put the needs of others before his own. I do not think Scott fully understands what an inspiration he is to his friends and family as a strong support base for all of us. He is a rock. Plans might change, but dear friends never do, and my brother always finds a way to look out for everyone’s best interests and do the right thing. Scott is my silver lining.

Out of the blue, my friend Karen sent me the below verse. What a great reminder that we are never alone.

Proverbs

That brings us to freckles… Just like my young daughter said many years ago, I have excitedly said, freckles over the past few days. Anyone that knows me can see vitiligo has completely taken over my hands, my feet and my neck and is creeping up my arms and legs with large irregular patches of glowing white non-pigmented skin. There is no known cause for this depigmentation, other than it is probably an autoimmune disorder affecting about 1% of the population. It is unpredictable it doesn’t typically cause any issues other than white patches and until recently I have never opted for any type of treatment. To be honest I don’t really see the affected areas until they were brought to my attention, but now that I am aware of them they do bother me. They really bother me. A short time ago my dermatologist recommended trying to re-pigment some of the areas to help prevent sunburn on these large patches, and I figured why not, what do I have to lose? I am now several weeks into a twice a week light therapy regime and was told that it may take months before any re-pigmentation may occur. But I do not have to wait. I recently looked down to see dozens of freckles on my hands. Freckles! If the pigment continues to regenerate great, if not, it really isn’t a big deal. But for now, I can smile and say it. Freckles!!