Flat Stanley

stanley flagPapa’s grandson Tyler is working on a school project and recently mailed Flat Stanley to him.    Flat Stanley is a character in a set of children’s books who became flattened when a large bulletin board fell on him one night while he was sleeping.  The books are based on the adventures Stanley has after his brother decides to mail Stanley to visit friends all over the world.  The Flat Stanley Project encourages students to mail a small Flat Stanley to their friends and have them take pictures with Stanley to record his journey.  Tyler’s class is participating in this project and he wrote a note asking Papa to show Flat Stanley some of the fun sites in our local area.  The weather was beautiful this past weekend so hoping for an adventure I thought I would take Papa and Stanley on a trip to Washington DC, and to also log in some steps.    Papa was hesitant wondering how far he would be walking but he will do anything for his grandchildren and was game to try.  His only comment before we left was do they have benches; can I can sit and relax every now and then?  I assured him there are plenty of benches along the mall in DC, and we will stop whenever Stanley or Papa needs to rest.

As we got closer Papa was a bit worried about carrying Stanley with us, and asked if he could tuck him in his shirt pocket.  I never heard of Flat Stanley before, no one will know who he is, and they will think I am weird.  I reminded him about the books and photos I had shown him of Flat Stanley online and assured him that people will know Flat Stanley, but it was OK for Stanley to ride in his pocket if he wanted.  You cannot imagine his relief as we asked a few people to take our picture while walking around Washington.  Every person not only knew who Flat Stanley was, they were more than happy to share their experience with Papa.  One girl told us about how her brother had made a life-size Flat Stanley several years ago and mailed him to friends in Japan; a visiting family laughed and told us how they showed Stanley around a small town in Ohio which wasn’t nearly as interesting as DC; and a third person said her class completed the project and she still has her Flat Stacey along with the letters and photos she received from almost 20 years ago.  It was nice to see others fond memories of Flat Stanley and to watch Papa’s confidence grow as we spoke to people and he was able to start telling others exactly who this Flat Stanley belonged to and why he was carrying him around.

Papa and Flat Stanley at McDonalds
Papa and Flat Stanley at McDonalds

Ironically we learned that Stanley loves McDonalds, just like Papa, so we had to make that our first stop on our tour.  Papa could not have been more thrilled!

Papa has toured Washington on previous trips but he does not recall being there, and as is common with memory loss it is frustrating to have someone tell you have been somewhere or done something if you cannot recall the memories.   Because of this we treat many of Papa’s experiences as if they are happening for the first time.  Papa, Stanley and I did not run into any exciting escapades this weekend, but it was nice to be able to explore the area and talk with some tourists while taking pictures with Flat Stanley at some key places in DC.  Fortunately Stanley will be staying with us for a few more weeks so we will be able to take him back to see the cherry blossoms blooming along the tidal basin, and wander with other visitors along the mall to see other monuments and memorials and hopefully finding an open bench every now and then so Papa can talk to tourists or tell us what he is wondering about.  We also have plans to see a baseball game next week, a full stadium for the Nationals season opener is bound to be an adventure for both Papa and Stanley!  Go Nats!

Papa and Stanley in Washington DC
Papa and Stanley in Washington DC

Stanley humbly rode in Papa’s pocket throughout the morning, but by afternoon Papa was proudly waving him to others along our walk.  It is wonderful that Papa is increasing his steps in our neighborhood but it was also perfect timing to receive Flat Stanley to encourage Papa to walk with us in other areas.  Papa does great on both local and extended walks and on several occasions has logged in over three times his daily step count in just a few hours.  Papa might tire easily and he never goes by an open bench without stopping, he may need a pep talk some days to get going and he may need to take frequent bathroom breaks along the way but his stamina will increase as we encourage him to keep moving, one step at a time!   What is good for the heart is good for the brain and each step will help Papa’s cognitive functions and help get Papa in shape for his summer trip.  Thanks to Tyler, and Stanley, for helping Papa add a few more steps to his Fitbit, we had a great time!

Fitbit

Walking is great for people with memory loss to help improve cognitive functions.  Several of the neurologists we have seen have advised us to work on getting Papa started on a light exercise and walking program to help slow his memory decline.  In addition to his various puzzles and other thought activities, they have explained that walking or other forms of physical exercise will help to improve brain health by increasing the blood flow and transporting more oxygen to the brain.  Consistent exercise should help form new neuron connections and hopefully slow the brain from any further atrophy.  Although Papa talks as if it were a short time ago, it has been over twenty years since he would walk for hours on the streets of Sun City as he tried to stay fit.  Since that time he now shuffles as he walks; his steps are shorter, his pace is slower, and his balance is not what it used to be.  This type of gait change is very common in people suffering from memory loss, and some studies even suggest this is one of the first noticeable changes for a person developing dementia.

Recently Papa said he wants to get back into it, and reminding him of the travel and outdoor activities he will be doing this summer visiting relatives is a wonderful incentive for him to get started.   Now that the spring has arrived and the snow has melted (sort of) we are taking regular walks together each afternoon in addition to his short jaunts to the corner as he waits for us to arrive home each afternoon.  During these outings we make sure he has a clear path and warn him in advance of steps or large cracks in the sidewalk, or anything else he could possibly trip over.  I conveniently switch from his left to his right as we walk after noticing that even a large slope in the sidewalk can cause him to veer towards that side.  Each time we walk around the block we hear the same comments: This is quite a hill, I am already winded.   Don’t worry Papa; it is all downhill from here!  That house has a lot of toys they must have a bunch of kids.  Yes, he is an Army Chaplain and his family will be getting ready to move this summer.  What kind of tree is that?  That is a Magnolia tree, wait until you see it flower, it is beautiful.   That house is taller than the rest; I would not want to walk up those front stairs.  Me either!!

I wanted Papa to be able to help set his own goals and monitor his fitness progress, so we purchased a Fitbit for him.  This activity tracker is small enough to fit into his pocket and will keep track of how many steps he takes on a given day.  While it actually monitors more than that, we have turned off the other features on his device to keep it simple.  I can show him his online status to see if he is meeting his goals, but he also able to monitor his own progress and   frequently pulls his Fitbit out of his pocket to check his count.  Papa definitely wants to make sure he is getting credit for each step that he takes!  What we need to work on however is for him to realize it is ok to exceed his set goal.  The challenge for Papa seems to be to try and hit his daily step count exactly and not waste any extra steps after his target number has been reached.  Other than getting a mental workout trying to count how many steps he will need at the end of the day before he puts on his relaxing clothes, there is no prize to hit the goal number exactly.

Each walk does not need to be an excursion out of Papa’s comfort zone; we have measured the mileage around our block and local area so Papa has a sense of distance.  We have conveniently driven to the bank with him and walked home to increase his walks and continue to familiarize him with our neighborhood.  Last week on a sunny day he managed to walk both directions to the bank and back for a total of two miles with a brief stop for a Slurpee on the way home.  Success!  Fortunately there is a bench on the route so Doug and Papa could relax for a few moments.   I am not in a hurry, why would I want to drink and walk at the same time? I never heard of anyone doing that before.  So they sat and watched the cars drive by as he finished his drink.  Leave it to Papa, he has also found, and used, the one port-a-potty on their one-mile route home.   I worry what we will do once that has been removed….  Papa was very proud of himself for walking to the bank and back, but did mention he is not in a hurry to do that every time he has to cash a check.

End note:  Please let me know if you have a Fitbit and want to friend Papa to see his progress.

I’ll Pay For My Bananas, Thank You

Those who know me can attest that I can be like a mother bear when I feel as if someone has been taken advantage of.  Yesterday was one of those days, and a local store might just be glad I was not running errands with Papa.

The neurologist changed a couple of Papa’s medications.  I have explained to Papa that the majority of his medications are long term meds and will be received through his retirement pharmacy benefits mail ordering system, but if he needs a short term or new prescription we will pick it up at a local pharmacy.  We previously went into our local large chain pharmacy, verified they will accept his insurance, registered into their system and dropped off a prescription.  One of my intentions for choosing this pharmacy is that this retailer is very close to our house and a large enough department store that Papa can walk through the aisles shopping while his prescription is being filled; he never has to leave the store.  He can also use this same chain pharmacy while he is visiting family in other areas if he needs something.  He knows this is his pharmacy and today was no different; he dropped off his new script and had 20 minutes to wait for it to be filled.

While waiting, Papa left Doug for a few minutes and decided to walk next door to the grocery store to pick up milk, eggs, and bananas.  Our family goes through a lot of bananas and while I could make a dozen jokes about how we like them a bunch or perhaps we often feel like we are going bananas, or maybe we just have appeal, I won’t get off track…  We just all appreciate the fact that we like bananas and if you go to the grocery store to get anything you pick up a bunch or two.  Papa might forget why we run out on other errands, but he always remembers to get bananas at the market whether they are on his list or not.

Doug walked next door several minutes after Papa and after looking through the entire grocery store he finally found Papa standing in the pharmacy department wearing his t-shirt getting a Shingles vaccine.  WHAT!?!  Out of curiosity, Papa had finished his shopping and walked over to the pharmacy counter and said he was filling a prescription next door and just wondered if this store also took his insurance card.  Although we have explained we will be using just one local pharmacy to keep things simple he figured it would not hurt to just ask if they took his card.  Maybe he still had his insurance card in his hand and he was thinking that back home he had prescriptions filled at the local grocery pharmacy and he should have brought it here; or perhaps he thought the stores were combined and he could pick it up at this location; or possibly he felt comfortable knowing there was a backup pharmacy very close; or more than likely he was just curious to see if all pharmacies accept his insurance card.  Papa will talk to anyone and I believe the pharmacy tech was an active listener.  They looked at his card and registered it in their system and asked Papa if he needed anything else.  During their brief conversation Papa was asked if he had already had the Zoster Vaccine to prevent shingles.  His I don’t think so answer resulted in them providing the vaccine, after all he was already in their system and would get a store shopping voucher if he utilized their pharmacy services.

I have a problem with this.   Papa is 80, he said he was already getting a prescription filled next door, and he replied that he did not know if he had the immunization or not.  While the Shingles vaccine is a one-time dose and I am not sure if a second booster could possibly have any unnecessary side effects, I feel the pharmacy should have been more accountable to their customer.  They probably should have told him to check his medical records before they provided the vaccine, and definitely should not have swayed a friendly 80 year old with limited memory by giving him a free shot and promising him a $10 gift card for a first time pharmacy use.  Papa used the card to pay for his bananas.

Anxiety

Papa has an appointment with his neurologist this morning.  Since moving to Virginia he has been to an internist, an audiologist and the dentist, but he has not yet seen his new neurologist.  We have been trying to space his various doctor appointments because he seems to get a bit nervous about going, he worries about not only how he is getting to a new office, but also what he is going to say to the doctor, if they will take his insurance, or when he will have to return to see them.  We have assured him that one of us will always be with him for his appointments; we will work out all of the scheduling and finances, help him to talk to the staff, and make sure he puts all future visits onto his calendar hanging on the back of his door, but he still feels a bit uneasy getting used to new places and different doctors.

We have had company for the past two weeks.  It was wonderful to have a house full of people, big dinners around the table, and spending our evenings sitting around just talking or playing games and, of course, holding my granddaughter.  This was a big contrast compared to the quiet routines we have set with Papa over the past few months.  I noticed that after the first week of our visitors he was much quieter than usual; he was just trying to follow the conversations vice trying to join in.  I realized that many of the conversations we had held prior to our guests arriving revolved around him in the past or our day to day activities whereas adding more people into our table talks the discussions would often quickly jump from one topic to another and they were frequently future based or open ended items which can be confusing.  It must have been like following a ping pong match, turning and looking at each person as they were talking only to then turn as the next person responded, it was hard for him to keep up.  During the times he was quiet I noticed he would tap his foot, drum his hands on the table, or run his fingers over a small comb in his pocket, and I would use these habits as my cue to quietly direct the conversation over to him for a moment.  We had heard all of these sounds over the years; he would often make them with Nana when the conversations became overwhelming just to change the topic.  She would say in an exasperated voice Wayne and he would act as if he had not done anything.   I can only imagine that he still hears her voice and misses her reprimands during any overwhelming moments as well.

We did not realize the amount of anxiety Papa felt about today’s doctor visit until we woke up this morning and realized he had been quietly sitting up all night.  I quickly asked him what he was up thinking about before I left for work: I thought you had to leave by 5:30 – It is ok, I am taking my time today.  I hope the kids made it home safely – They are still driving, they stopped overnight and will be home today, we will call them this evening and make sure they are safe and sound.  I have a great family, you can’t say my grandkids don’t have a good home – Yes, we do have a great family, we are all very blessed.  Is Doug going with me today? – Yes, Doug will be with you today when you go meet the new doctor.  I am almost out of my dizzy medicine – We will get more.  He calls Aricept his dizzy medicine.  He used to have bouts of dizziness at various times during the day, and he said that his Aricept helps that.  The bottle has a warning that it may cause dizziness, but to him he believes he takes it to combat his dizziness. If it helps his dizziness, real or imagined, it is all the more reason for him to take it.

Driving to work today I realized we will have to take the next few weeks getting back into our quiet evening routines.  Having Papa help with dinner again when we get home, rather than have five people in the kitchen all doing something different.  Starting a new puzzle in the evenings where we can talk as we are looking for pieces rather than the stress of always looking at someone and perhaps being at a loss for words; and with fewer people it will be easier to direct the conversation for him to talk about times that are much easier for him to remember.  And fortunately baseball season has started so we have evening games to look forward to watching.  It has not taken long for him learn which channels televise spring training and to encourage him to become a Nationals fan.  Go Nats!

Endnote:  I received a call moments after Papa’s scheduled appointment time asking for a list of his medications.  Before I could send one, Papa remembered he had carried one with him today.  Success!  I just hope that is not what he was up all night thinking about.

Top 10 Repeats: Again and Again and Again….

In many situations we know what is coming out of Papa’s mouth before he does.  Sadly his brain is just not wired the same as it used to be and many of his comments are just habits, just a specific thing to say in that particular moment.  It is just the first thought in his mind, what he is thinking at a right then, or possible just his way to start a conversation.  In David Letterman style, here are his top 10 repeats:

10.   Can I unbuckle yet? or Unlock the door! –  Both of these relate to riding in the car and his quest to get out as quickly as possible. As we pull onto our street or enter a parking lot he asks if he can unbuckle his seat belt.  Then as soon as we stopped the car, before the engine is even turned off he orders us to unlock the door.   Most times we try to unlock the door before he has a chance to notice, but without checking he still makes his demand.  We just smile and say it is open or try it now.  We have tried to tell him he can unlock it himself, but that just doesn’t seem to stick.

9.     The door is not locked! – This demand refers to both the house and the carThe moment he steps out of either the car or house he makes this comment.  It does not matter if we are still in the car or if we are still making trips in and out of the house unloading items.  Each time we kindly mention that we will go back and lock it when we are done.  It is still open, I just checked.  I am not sure of his reasoning as to why it needs to be locked immediately when it is obvious we are not done yet but we try to assure him that both the car and the house will be secure.

8.     Are we going to McDonalds? –We cannot drive by a McDonalds sign without Papa asking if we are going to stop, it is his favorite “restaurant”.   Actually, we cannot drive anywhere without him asking if we are going to stop by McDonalds, we do not have to drive by a sign.

7.     You don’t drink coffee?  or You don’t drink milk? or I never heard of anyone who doesn’t like syrup!  – These are the most common food related repeats. We have the coffee pot and his special decaf coffee packets ready for Papa to make a cup or two of coffee each morning but it doesn’t seem to stick that we don’t drink coffee or milk.   I thought everyone likes coffee?  No, Papa, it just isn’t a part of our routine.  Why don’t you like milk?  I never heard of anyone who doesn’t drink milk.  We can tell him we drink other beverages, but that is not one of the things that becomes engrained into his memory.  Each time I put fruit on pancakes or French toast and he mentions not using syrup I am tempted to reply back asking him why he uses so much syrup, but I don’t….

6.     The porch light is on!  – Papa used to turn off all their outside lights, close the blinds put on his pajamas and lock himself in their personal fortress each evening before sunset.  We are trying to make him understand that things happen a bit later here.  Doug gets home later, we eat dinner later, and we go to sleep later.  We also keep the porch lights on all night and turn them off in the morning, just as all of our neighbors do.  I personally think the many crime shows he watches on TV play a part in his mistrust of strangers and he is trying to make the house more secure and invisible to all outsiders.

5.     Aren’t you going to change your clothes! – Every night he wonders why Doug comes home from work in a shirt and tie.  He doesn’t understand why the tie does not get loosened at all during the day, or at the very least the moment he gets in the car to drive home, and why he does not change clothes the moment he walks in the door.  Ironically he has never said this to me, even if make dinner wearing a dress and heels.  I am tempted to wear a tie one day just to see if I will get the same response.

4.     You’re late! –  I have repeatedly told Papa what time to expect me home from work and have padded that time slightly just to make sure he is not pacing in front of the house should there be any traffic on my commute home. He can never remember what time I have told him, never.  It is probably partially my fault for not being on a consistent schedule.  Several days a week I try to surprise him and come home earlier, and that seems to be the time he remembers.  I can be 30 minutes early and his first comment is you are late, because the day before I was an hour earlier.  I am glad my workday starts long before he gets up so he does not have more time during the day to think about what time we will get home.

3.     You are cooking again?Yes Papa, we do eat every day.  J  I have tried to explain that cooking is relaxing for me, I truly enjoy spending time in the kitchen cooking diner or baking desserts.  He enjoys eating but sees cooking as work.  I have him help while I prepare dinner each night, so we are able to spend more time together, most nights he loves to assist but every now and then he will sneak back downstairs and turn the TV back on.  I imagine on those evenings he is really just thinking he would be happy going to McDonalds, see number 8 above.

2.     How do I look? – I used to think Papa just wanted to hear someone compliment him, but I now believe that he really is worried about how he appears to others.  We once made the mistake of not closely looking when he asked and I will not do that again.  So our response has changed from “you look great” to really checking how he looks when he asks and then responding with “you look great, how do I look?”  I want to assure him that while we are not as concerned as he is, we think about being presentable to others also.

1.  Most frequently we hear – Sit down and relax!! – Papa is retired and thinks it would be nice if everyone were retired.  We understand that he does not always think more than the immediate moment; he just wants us to sit and spend time with him.  So, for a short time we sit with him before finishing whatever task we were working on.  He does not think about the activities we complete are what goes into running a household, and it is just inconceivable to him to remember a time in his life when he was much busier.   I know Daryl and Lisa have also heard this phrase multiple times, and I am not going to spare them.  The next time Papa says, Sit down and relax!! I will suggest he call them to see what they are up to and maybe I will be able to spend a few quiet moments just making dinner.

Unlike raising a child, who learns from repeated responses, Papa will not remember many of the things we tell him on a daily basis.    Some days are better than others and of course we are polite and try to be consistent in our replies, but that does not mean we don’t catch ourselves biting our tongues sometimes for the questions or comments that we know are coming.  We understand this is not a choice; Papa does not repeat himself because he chooses to, he repeats things because that is what he knows and understands, it is his way to communicate.  And, as always, we will do our best to calmly communicate back.