Thursday, August 27, 2020

Thursday, August 27, 2020

Tonight's picture was taken on August 8, 2009. Mattie was surprised by a big RED ride-on vehicle. This was something Mattie always wanted. This vehicle needed to be assembled and Mattie supervised Peter the entire time on the deck. Mattie was very excited by this gift, but of course for Peter and me it was a very bittersweet reality, as it was the last gift we would be able to give Mattie. 

Quote of the day: Today's coronavirus update from Johns Hopkins.

• Number of people diagnosed with the virus: 5,863,363
• Number of people who died from the virus: 180,595

It was another full day in "paradise." When my alarm goes off at 6:15am, I am not sure if I am coming or going. I do know, I drag myself out of bed, so that I have enough time to get myself together before my dad's caregiver arrives. 

My dad agitates easily. We are trying to update his will and his power of attorney. Instead, of letting me take the lead on this, he wants to do it. All fine and dandy, accept he is not capable of doing this anymore. This realization causes great stress and anxiety. His stress can be hard to manage when you are a recipient of it. I took a 15 minute break today, and sat outside in the backyard, where I snapped this photo. When I filled the tea kettle this morning with milk instead of water, it signaled to me that I am very tired. 

My dad's physical therapist came over today. The goal of the session was to walk 20 minutes without stopping. The PT, myself, the caregiver, and my mom went walking with my dad. My dad got down our street and halfway back in 20 minutes. We take a wheelchair with us, which was needed to get him back home. My dad is making physical progress, but I have observed that he is exhausted. We have given him a break from in home exercises yesterday and today. He believes this will help, but I am not sure I agree. As I find the more stagnant he is, the more exhausted he becomes. For him exercising doesn't come naturally, and therefore attributes movement to expending enormous amounts of energy. His exhausting produces more agitation, snappiness, and at times hostility. All emotions that are hard to balance from hour to hour. 

This afternoon, I took my parents out to lunch. We went to a lovely restaurant 45 minutes from their home. So I spent a good amount of time driving on the LA freeways. If you haven't had the pleasure, then it is hard to describe the chaos of driving on their 6-7 lane highways! LA is the only place I have driven where people fly down the highways at 70 or 80 MPH, and then two seconds later slam on the breaks and come to a complete stop. It is constant speeding and breaking. If you aren't careful, it is easy to get in an accident. 

Since I leave Los Angeles on Monday, I wanted to go to the grocery store and stock up on items for my mom. I have yet to go to their grocery store and not find a line! I have gone weekdays and weekends. There are always lines. 

As you can see, I am trying to stock my parent's pantry with all sorts of items. I have done so much here this month, everything from intense caregiving to setting up on-line accounts, bill paying, dealing with doctors, caregivers, the home health agency, getting xrays, addressing their front gate issues, and trying to work out estate planning documents. This is just the tip of the iceberg, as my days are very very full and I have a feeling when I get back home and stop moving, I will see how tired I really am. 

Wednesday, August 26, 2020

Wednesday, August 26, 2020

Tonight's picture was taken on August 8, 2009, two days after we learned about Mattie's terminal diagnosis. If you look at Mattie, you can see how emaciated his body was, and yet he was still able to smile. That day, Peter and I went to Target and purchased a big ride-on vehicle. This was something Mattie always wished for and it is ironic what things you will do and purchase when you know your child is dying. Mattie only enjoyed this ride-on vehicle for a few weeks, nonetheless, it was worth every penny. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people diagnosed with the virus: 5,817,538
• number of people who died from the virus: 179,596

Peter sent me this photo today! What is this? A pair of Mattie's old sandals. Peter found them in our neighbor's apartment. Our neighbor, JP, died in February. JP had a dog named JJ ("Just Jack"). JJ and Mattie were good buddies. When Mattie died, JJ would visit us daily and sit on our front step, waiting for Mattie to come out. One day, JJ went into our home and came out with a pair of Mattie's sandals. Apparently he took these sandals home with him and put them in his doggie crate. 

Peter is the executor of JP's will and is working hard at cleaning out his home and dealing with his estate. In the process of cleaning out, he found these sandals in JJ's crate. Now ten years later!! Amazing no? There are so many emotions for me in seeing these shoes!

Meanwhile, I spent a good portion of the day creating a file of my parent's wills, power of attorney, and medical health power of attorney. Unfortunately my parents created their wills several years ago when I was much much younger. Therefore, I am only considered a power of attorney for one parent, if the other dies. NOT practical now, as I need to have the authority to help both of my parents if and when it is needed. Peter and I have tried contacting the lawyer who created their original wills. We have called and emailed. Forget it! I think the practice must have gone out of business. So now I am trying to find a lawyer who can help me. 

Honestly my days are frenetic, as I am not just managing physical care, but I am managing people coming in and out, helping my mom pay bills (things she did not do when my dad was healthy), processing all insurance claims, and interfacing with all health care providers and agencies we are working with. 

My dad was always the one overseeing the day to day logistics at home, so this is a major learning curve for my mom, and my dad sees he isn't up to doing any of the financial accounting he used to do. He gets upset that my mom has taken over, but on the other hand he also has no desire to do it. He can't focus and he certainly can't remember the activities he does from one minute to the other. 

My dad debates me often on the decisions being made. Which sounds understandable, but as a supporter of his care, it can be wearing. Challenging, and exacerbating when I know his logic and reasoning is not what it was. My top concern is making sure they are safe and no one is taking advantage of them. 

Tuesday, August 25, 2020

Tuesday, August 25, 2020 -- Mattie died 569 weeks ago today. 

Tonight's picture was taken on August 6, 2009. In a way, it was a companion photo to the one I posted last night. Last night, I posted a photo of Mattie sitting around the art table with his friend Jocelyn and her sisters. But we weren't in the photo! Where were we? We were in a separate room talking to Mattie's doctor. She shared with us Mattie's terminal diagnosis and how there was NOTHING more we medically could do for him. It was a very hard meeting, to say the least. When we came out of the meeting, you can see Mattie was studying us! He wanted to know where we were and what we were doing. Honestly you could make a comic strip out of this snapshot in time. However, there would be nothing funny about any of the captions. Kneeling in front of Mattie was Kathleen. Kathleen was an inpatient nurse of Mattie's, who he was close to. Kathleen literally came off the inpatient unit, to visit with Mattie in the outpatient clinic because the team understood the magnitude of the day for us. 

Quote of the day: Tonight's coronavirus update from Johns Hopkins. 

• number of people diagnosed with the virus: 5,773,220
• number of people who died from the virus: 178,347

This is the front of my parent's home. Keep in mind that I was NOT snapping this photo from the street. Instead it is a 500 foot walk from their front door (by the roses) to the street. It is the endless driveway. Once you walk to the end of their driveway, we then have to walk down our neighbor's driveway, since the house is on a flag lot. At the end of our neighbor's driveway is a gate to the street. It is a common gate that we share with the neighbor. So understand that we can press a button to open the gate from inside the house, but so can our neighbor. Sometimes we do it at the same time, not on purpose of course, but we are both trying to access the gate to allow visitors out. When this happens, chaos unfolds. Because she presses the gate open from her house, and I press it open from my parent's house at the same time. You may think that this would be more rare occurrence, but it has already happened to me twice this week. 

The neighbor presses the button to open the gate, while I am simultaneously pressing the button for the gate to open. But instead it triggers the gate to close. Since we have NO video camera on the driveway, I have no idea what is happening out there! I had it with this gate, especially when my dad's caregivers were going down the 500 foot driveway.... I pressed the button to let them out, but instead, they were trapped by the gate and I had to walk out to resolve the issue! Not practical on a good day, but really stressful when caring for someone inside the house. 

I am going to walk you down the 500 foot driveway. So basically I was taking this photo from the front door of the house.  I walk on the path to the driveway. But check out the length of this driveway!

This part is my parent's driveway. 

That driveway, leads to our neighbor's driveway. Which we need to walk down to get to the gate. I am telling you it is crazy, balancing this gate. I have no patience for it while also managing all the caregivers who stop by each day. 

Last night, our friend who is an electrician designed this kitchy exit key pass station. Literally visitors can now drive down the drive way. Open their car window, input a security code and the gate opens. Now visitors are in control! THANK GOD! 

Our neighbor on the flag lot knew we were going to work on this system and she agreed to it (as it benefits her and her visitors too). However, when she saw the plastic flowers the electrician's wife put on this pole, she called me. She requested that I remove all the flowers as she felt it did not fit with her landscaping. I worked about a 14 hour day yesterday, and having to go back out and cut wires to dismantle the flowers wasn't top on my list. But I did it. Needless to say our caregivers used this exit system today and it worked like a charm!

The electrician's wife is a baker. She knows I love her gingerbread cookies. So she baked me two boxes full. They perk up my day! Mattie would have loved this as he was really the one who introduced me to gingerbread. He loved it. 

Meanwhile, Sunny is keeping Peter busy! Peter was in the kitchen cooking Sunny ground meat, and Sunny was keeping an eye on the process. 

Monday, August 24, 2020

Monday, August 24, 2020

Tonight's picture was taken on August 6, 2009. The day after we learned Mattie's cancer diagnosis was terminal (as his cancer spread throughout his body). While in clinic, Mattie sat at the art table with his good buddy Jocelyn (far right) and her two sisters. Jocelyn knew what had happened the day before and she and her sisters wanted to do everything possible to make Mattie's time in clinic that day positive. We met Jocelyn early on in Mattie's diagnosis. Jocelyn understood what it was like living with osteosarcoma and Mattie gravitated to Jocelyn because she had a way of being honest about the disease while also being funny and humorous at the same time. I know that doesn't seem possible, but Jocelyn, like Mattie was a special and memorable person. 

Quote of the day: Tonight's coronavirus update from Johns Hopkins. 

• number of people diagnosed with the virus: 5,737,398
• number of people who died from the virus: 177,179

Peter sent me this photo of frick and frack! Indie and Sunny are quite the pair. They fill up our home and I know when one of us isn't there, they do serve as wonderful companions. 

Every morning after breakfast, I sit with my dad and two brain exercises. He is getting the hang out of numbricks. He still needs coaching through it and help, but the concept of filling in the puzzle with numbers in sequential order from 1-81, is beginning to stick. 

After numbricks, I introduced a memory game. Today's was to read a sentence or two, retain the content, and then a minute or so later, try to answer a question pertaining to what he just read. This was greatly challenging, but I don't let him give up. We persist through it so that he sees he can do this with some concentration and focus. 

Right after brain games, Jon, my dad's physical therapist arrived. They worked together for about an hour. My dad went up and down our house stairs four times. After which, he walked the entire circumference of the house four times. He did this in ten minutes. Jon wants him to be able to walk twenty minutes everyday and to build up stamina. Walking around the house means going on concrete, grass, and even stepping stones. Walking on different surfaces is challenging. 

Jon even did balance exercises with my dad. Needless to say, he got a big workout! Once Jon left, my dad did his occupational therapy exercises. He has active mornings, which is why by noon he really is hungry and wants to eat. Which is excellent, since in June he had NO appetite at all. 

Before we headed to lunch, we ran chores. The first of which is we had to get a document notarized. I brought several pieces of the document with me, but when I got there, they wouldn't notarize my forms, because I did not bring every single page with me. So I had to get back in the car, and retrieve all the pages at home. I was livid. Then drove back to agency to try the process again. I thought it was particularly ironic that the notary never really looked at all the forms, and truly wanted to say.... really? You have me go back to get all the forms, and you don't even look at them. The fellow helping us actually gave us a hard time. As the document is in my dad's name. So he wanted to know where my dad was (he was in the car waiting for us)! I told him the form did not NEED TO BE SIGNED BY MY DAD! Instead the form was for his spouse... my mom. He said the forms did not say that! I was ready to crown him on the head. So I grabbed the forms and READ THEM TO HIM! I had little to no patience with him. 

I dealt with the notary after interfacing with my dad's podiatrist office. They called my dad this morning asking WHERE WAS HE? That he missed his appointment today! I literally got on the phone and gave it to this office. I know exactly what date and time the appointment was (this Wednesday at 11am), because I made it in June. So you can't put one over on me or bamboozle me. The receptionist said my dad had TWO appointments this week, Monday and Wednesday. I said, "why on earth would I make two appointments for the same week?" She had no answer. Then she did some digging and realized that the doctor was going to be in surgery on Wednesday, so his staff canceled our Wednesday appointment and changed it to today, but NEVER contacted us. I lost it! I asked her how were we supposed to know the appointment was rescheduled if the office did not call us!????

On top of that, I am balancing getting my parent's car repaired and working with an electrician to come up with a more user friendly system that manages the automatic gate from the street onto their property! Right now I waste more time opening and closing the gate for all visitors who come to us daily. However, we are on a flag lot. So the neighbor can control the gate too! Major problem. Case in point, this morning, I had pushed the button inside the house to open the gate. I walked 500 feet from my parent's front door to the gate where the street is, I had my hands full of garbage. When I got to the front gate, instead of finding it open, it was closed! I had just opened it!!! Why was it closed? Because our neighbor pressed the button at the same time. So I opened it and she closed it. Therefore, when I got to the gate, my hands were full and I couldn't open the gate. As there is no button near the gate to open it. This gate is my nemesis and it has to be fixed. 

I put in 12 hour days here and frankly do not know how things function when I am NOT here. It is a true worry, and going back to Washington, DC is no bargain either, as I find it much harder to manage things from 2,500 miles away. 

Sunday, August 23, 2020

Sunday, August 23, 2020

Tonight's picture was taken in September of 2008. Our neighbor dropped off Dandy Dog Dakota. A huge handmade stuffed animal for Mattie. Literally the dog was as tall as Mattie. Mattie got a kick out of this and posed on the couch to do a size comparison. The number of gifts and toys Mattie received over the course of his treatment was incredible. I am not kidding when I tell you that if I put everything together, we could have filled up a toy store. When Mattie died it was hard to know what to do with all the items we received. It took me five years to process through everything. But nothing was thrown out. Many of the gifts and toys were donated so other children could enjoy them. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people diagnosed with the virus: 5,699,804
• number of people who died from the virus: 176,765

Peter sent me this photo today! Sunny was on the National Mall looking directly at the Washington Monument. 

Just like every other morning here, I started at 6:15am. After breakfast this morning, I did several cognitive exercises with my dad. I try to do these with him first thing in the morning, when his brain is freshest and more receptive to this type of skill building. I notice his caregivers shy away from these exercises. Most likely because they are HARD. It involves being able to teach concepts and to be persistent and provide your student guidance to have a successful experience. 

Today's exercise involved looking at these five faces. With the goal of remembering and matching each face to the appropriate name. In order to do this, most of us naturally code in our head. Meaning for example, with Tamara on the upper left of this photo, we see her holding a telephone. So we might code her in our head as Tamara Telephone. 

This exercise proved challenging for my dad, but he did eventually get it. I am quite confident that the more he exercises his brain, the better he will be making connections and finding strategies to remember people and things around him. Of course I am a realist and understand that it takes discipline to do what I do each day with my dad.

He did his 4th Numbricks puzzle today and I could see he now understands the rules and the concept behind the number game. Today's puzzle went much faster than the first three.   

After cognitive exercises, my dad worked with his caregiver on all his physical and occupational therapy in-home exercises. I went out again with my mom and we walked about four miles together. In intense heat, but we needed the change of scenery and non-stop caregiving. Along our walk, I came across this wonderful zucchini plant!!! Beautiful yellow flowers, not to mention two zucchinis on the vine. 

Hibiscus are everywhere! My parents live in a beautiful neighborhood, surrounded by gloriously mature trees and plants. I can't tell you how many wonderful birds are all around us! Including green parrots. 

I snapped a photo of this orange tree, because I can't believe the owner of this house doesn't pluck these wonderful fruits!

The neighborhood is very close to NBC, Universal, and Warner Bros studios. This person has a prop box that once belonged to the Tonight Show in his driveway! It caught my attention because it says... Santa and the Moon. 

We went out to lunch today and my mom snapped this photo. Going out to lunch is not a nicety. For my dad's existence it is a necessity. I am aware of the fact that we could catch COVID, but life is about risks. COVID is a possibility, but starvation and death are a certainty if my dad doesn't eat. When I arrived in Los Angeles for my first visit after my dad's hospitalization (on June 9th), I found my dad was emaciated and refusing to eat ANYTHING at home. He had lost thirty pounds during lock down from COVID. On June 9th, I got my dad out of his recliner (which he hadn't moved from literally in a week... in the same clothes for a week, wouldn't take his shoes off, and never left the chair to toilet), changed all his clothes, and got him in the car. It was his first day in months leaving the house to go to a restaurant. On that day he ate! Since June 9th, he has therefore been going out to eat for lunch every day. It is his BIG meal of the day. I truly believe that better and consistent nutrition are helping him to regain strength, and therefore comply with the challenges his physical and occupational therapists give him. 

My dad has always been an exacting person, but now with dementia, he becomes insistent. He has no insight on how confusing it is to be the recipient of his demands. As I remind him I am not an octopus! I only have two hands. When we go out to eat, I have three ziplocs in my purse. One has individual jams, another has chocolate chip cookies, and the third has packets of sugar. My dad loves eating bread, but we have cut him off of ALL dairy. So though he likes butter, it doesn't like him. Therefore, I bring the jams as he uses them in lieu of butter. As for the sugar, now with COVID, wait staff don't always bring out sugar. My dad gets upset and impatient, so now I cut that reaction off at the pass and travel with my own sugar. Similarly he used to love having ice cream after a meal. But we have linked his dairy consumption to his irritable bowel syndrome problems. Since he loves chocolate chip cookies and most restaurants don't serve that for dessert, out comes my ziploc of cookies. I feel like Mary Poppins. 

Saturday, August 22, 2020

Saturday, August 22, 2020

Tonight's picture was taken in September of 2008. Mattie was in treatment for two months by that point. Peter's clients from Canada sent Mattie this wonderful hat and ice hockey shirt. Mattie decided to put both on and of course that merited a photo! Mattie's support community was far and wide and each and every person who sent us a message and/or a gift will always be remembered and appreciated. It took a lot of support to manage through each day and reading messages and opening gifts were positive diversions for all of us. As this took our minds off of cancer for a snippet of time. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people diagnosed with the virus: 5,666,121
• number of people who died from the virus: 176,340

Up at 6:15am, caregiver arrived at 8am. Instructed her in the new technique to clean and bandage my dad's pressure sore on his back. Until this sore completely heals, my dad will get a nurse and wound care physician visit weekly. Sounds good, but at some point, managing all these people who come in and out of the house is very tiring. Extra tiring when it also means managing the horrific gate onto the property. I spend more time running around making sure people are getting in and off the property appropriately. In other words it is a complete waste of time! One day I will photograph this gate and the 500 foot driveway, to show you just what I am talking about. 

After breakfast, I sat and did another Numbricks puzzle with my dad. He continues to struggle with it, but I don't give up and keep reminding him of the instructions and process. His memory can hold content for about one minute, so therefore when introducing something new to him, I find that I have to constantly reintroduce the puzzle's objectives and rules to him. It takes great patience and understanding. Because otherwise it would be very easy to get frustrated. 

I have explained to my dad that he must do cognitive exercises everyday. Not just physical ones. He can see that he is getting stronger physically, and I remind him that this is a result of daily PT and OT work. So the same thing applies to exercising the brain. The more he works to complete cognitive exercises, my hope is that we can at least stabilize his dementia. I have NO delusion that an improvement is possible. Which is a deeply sad commentary, since this is no longer the person I last saw in Christmas of 2019. 

The one NON chore I have done all week, is my mom and I went for a three mile walk this morning. It was wonderful to get out of the house and not be managing tasks. It is super hot in Southern California (in the 100's), so doing anything outside is a challenge. I took my parents to Westlake today for lunch. Westlake is 45 minutes away from where they live. But it is true suburbs, with more wide open spaces and restaurants with large terraces. Yet eating in this heat is not appealing at all, but a necessity, as my dad wants to eat nothing when at home. 

When I got back home today, I literally did one chore after the other, after the other for several hours. I would say I am quite tired and still managing through a migraine. With my eyes tearing constantly, having a heavy head, not to mention a pounding headache. 

Friday, August 21, 2020

Friday, August 21, 2020

Tonight's picture was taken in August of 2008. About a month into treatment, most of Mattie's hair fell out. We were concerned with how Mattie was going to react to that sight. But it turned out Mattie did not seem to care. He noticed and observed what was happening, but wasn't upset. Or did not seem to show it. His reaction actually made it a lot easier for Peter and me to adjust to this change. Though I tried to introduce caps and hats into Mattie's life, he did not like the sensation of things touching his scalp. So we all learned to appreciate being bald. That day Mattie was constructing a tissue box holder. Ironically that box still sits on my nightstand today. 

Quote of the day: Today's coronavirus update from Johns Hopkins.

• number of people diagnosed with the virus: 5,621,035
• number of people who died from the virus: 175,343

Each morning, I get up at 6:15am. First and foremost, I make sure I am showered and dressed before I ever leave my room. Otherwise, I won't get the opportunity to do it. After which, I begin tasks such as unloading the dishwasher, taking out garbage, compiling laundry, and starting breakfast. 

At 8am, one of my dad's caregivers arrive. Though she assists my dad, they all need to be managed, as no one is going to do what I can. I am not trying to toot my own horn, rather, I know the patient well and also know what needs to be done! 

After my dad showers and dresses with assistance, he joins us at the breakfast table. After breakfast, I pull out some sort of cognitive exercise. I have told my dad that exercising the brain is as important as exercising the body. 

My dad's occupational therapist has introduced us to Numbricks. It isn't as challenging as Sudoku, nonetheless, it is about understanding sequential numbering and patterns. All I know is my dad has great challenges thinking sequentially and his short term memory lasts about one minute maximum. So you can instruct him on how to do the puzzle, but there is no retention. 

After brain games, my dad did laps on the patio with his caregiver. While he was doing that, I received a call from American Airlines customer relations (in regards to the letter I posted last night). The person on the phone was lovely and very professional. She understood the nature of my request and problem. She encouraged me to resubmit a doctor's letter outlining my dad's issues and have his doctor outline why my dad can't fly. In theory I needed to submit this documentation on the Airline's on-line refund center. However, I implored the representative to allow me to email her the documentation, because I am very frustrated with the on-line experience. She agreed to help me and I felt like I won the lottery. Someone who got it and also shared with me the refund process. Needless to say, after I got off the phone, I worked on the letter with my parent's doctor and submitted it to American Airlines. So now we wait for a response. I honestly do not know how on earth they would deny them a refund. 

After I did this, my dad's occupational therapist arrived. I participated in my dad's session! At 1pm, each day, I take my parents out to lunch. Today my parents wanted to eat in Calabassas, which is a 30 minute drive. Mind you it has been in the 100s this week, and eating outside, has been close to impossible for me, especially when I am also dealing with a migraine. When I got back from lunch, I  decided to go grocery shopping, as I do not like shopping on the weekend.  

All I know is the grocery store I go to in Washington, DC, never looks like this. The lines at grocery stores in Los Angeles are out of control. They do move, but after a full day, waiting in this line takes great patience! Don't you know it, the big gallon of milk I bought had a hole in it. I got milk all over the car, floor, etc! The tasks just never seem to end. 

Thursday, August 20, 2020

Thursday, August 20, 2020

Tonight's picture was taken in August of 2008. That day Mattie transformed a card board box. Not an unusual Mattie occurrence. Mattie's affection for boxes developed when I enrolled him in "construction club" during kindergarten. It was an after school club that basically encouraged children to use everyday objects around their home and to create with them! Mattie's love for boxes carried over into his cancer treatment. The hospital would save all sorts of packing boxes for Mattie because they knew about his imagination and abilities. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people diagnosed with the virus: 5,572,538
• number of people who died from the virus: 174,178

My parents have this beautiful backyard, and you want to know how many times I have sat in it since I have been here? Maybe once and for only minutes. When I tell you it is non-stop chores and activity, I am not kidding. The pace is frenetic and it takes a great deal of logistics to manage my day, bills, and health care issues and care. 

Today, my dad had a physical therapy session with Jon. Jon has been working with my dad since the week of June 9th. We have known him for two months and in such time, my dad has made physical progress. Jon had my dad walk around the entire house three times today. They were long laps that involved walking on different terrain. Grass being the hardest. 

Jon had my dad also do an obstacle course of walking on the patio, the grass, and around each potted rose on the patio. 

They then walked the entire periphery of the backyard. 

I think Jon is getting my dad walking more than he ever did before hospitalization!

After all the walking, he then did 50 sit to stands from a chair. Needless to say, he is exhausted today!

So we had the caregiver this morning, the PT session, a wound care doctor visit, and the housekeepers. It feels like grand central station. 

After lunch, I tackled American Airlines and AMEX. We were scheduled to go on a cruise in December. Of course we are NOT going now. However, my parents bought airline tickets in February for the December trip. Here are my two pieces of advice to all travelers! One, do NOT purchase airline tickets months in advance. There is no monetary advantage to the passenger. Two, if you are planning to cancel a flight, don't! Wait to see if the airline cancels or changes the flight first. This of course provides some logistical challenges on your part, but if an airline cancels or changes your flight arrangements, then they are required to offer you a refund. MEDICAL issues, even with a doctor's note, will not help you qualify for a refund. Despite writing to American Airlines and providing a doctor's note regarding my dad's condition, they have denied the refund. Instead they are offering my parents an airline credit for a year. It has to be used by February 2021. Also ridiculous as my dad isn't traveling NOW or THEN! They will not even allow my parents to transfer the ticket to me. So in essence money has been thrown out the window and the passenger has NO recourse. 

Below is the second letter I wrote to American Airlines. I will try going up the chain to get some compassionate person who understands that the human condition doesn't always follow rules and policies and some level of discretion is therefore needed when making refund decisions, especially for older adults.

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Thank you for responding to my refund request for my parent's December flight from LAX to MIA. They purchased their tickets through AMEX travel in February. I did contact AMEX travel service today and they assured me that they could not refund the tickets purchased, because they have to comply with American Airlines policies and procedures. Since it is non-refundable ticket, their hands are tied. 

I am writing to you in hopes that you can help me, as I would like American Airlines to understand the full extent of the issues and why my family is asking for a refund for these tickets. Right now, the tickets have been canceled and my parents were given a travel credit that must be used by February 14, 2021. The issue is my dad's health has greatly declined (nothing to do with COVID) and his doctor has stated he is NO LONGER able to travel. Therefore, giving my parents a ticket credit is in essence throwing money out the window. My parents are 85 years old. My dad was hospitalized in May and June and as a result has significant physical disabilities and late stage dementia. My parents live in Los Angeles and I live in Washington, DC. I fly first class on American Airlines every other month to visit my parents and provide respite for my mom and direct support for my dad. My family is no stranger to American Airlines and we fly NO OTHER airline. We are loyal to you. 

In May my parents mailed the attached document to American Airlines. The attachment included a doctor's note. I am absolutely stunned that American Airlines isn't taking into account medical issues and the advice passengers receive from their doctors. My family is adjusting to around the clock caregiving for my dad, as well as great medical expenses. I had no idea that on top of all of this, we would have to face the lost expenditure from first class UN-USED airline tickets. 

I would appreciate the opportunity to talk to a live human being at American Airlines, because your policies are unfair to your older adult passengers. We are not trying to cheat American Airlines, my dad has significant health issues that prevent him from leaving his home environment. In our time of need, I would hope that American Airlines would have compassion for what we are balancing as a family and would want to work with us to make this situation right. 

Specifically I would like to talk with someone about granting a refund of these tickets and I am hoping you will help me connect to the appropriate person at American to pursue my request further. I am aware of all of American Airlines' generosity and community based work. Which is why the decision to deny our refund seems contrary to your service based philosophy. I understand that American Airlines has company policies and procedures that must guide your business, but people unfortunately have issues and circumstances that do not always fit and comply. If my parents could travel they would. Their cancellation is not a whim. It is a medical necessity. It is my hope that American values its older adult customers and I look forward to hearing how we can pursue a full refund of my parent's tickets. As the money they spent on tickets should be devoted to my dad's care and not on an unusable set of airline tickets. Much thanks for your time and attention to my email. 

Wednesday, August 19, 2020

Wednesday, August 19, 2020

Tonight's picture was taken in August of 2008. This was Mattie's first month in the hospital receiving treatment. Mattie's room came with a big white erase board. We used that board to communicate with the nurses and to also record Mattie's inputs and outputs. However, that afternoon, Mattie erased the board and decided to draw! Not sure exactly what he created but if you look closely there were two blue people with umbrellas who looked like they were getting devoured by this big bug! Mattie loved bugs and the since the whole notion was creepy to me, my reaction to bugs inspired Mattie's interest even more. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people diagnosed with the virus: 5,524,398
• number of people who died from the virus: 172,965

I received this photo from Peter this morning! Our floor and air conditioning unit are fixed and back to looking good again. I am grateful to all the hard working folks in our complex, who have looked after us for decades! One less thing for me to worry about when I return. 

It was another red letter day in "paradise." As always my day started at 6:15am. In addition all my other tasks, I took on a few more projects for my mom today. One of which was to get a refund on their December air line tickets. Pre-COVID and before my dad's decline, we had plans to go on a Christmas cruise together. As Peter and I know all too well, life can change on a dime. 

My parents already bought their airline tickets for December and in May my mom wrote a refund request letter to American Airlines and mailed it. With it she included a medical letter signed by my dad's physician. Yet four months later my parents have yet to hear from the airline and of course there has been NO refund processed. So I decided to call American Airlines. Get this, I waited on line to talk to a live human being for 90 minutes. I think I should have received a gold star for hanging in there. However, once a representative heard my concerns, she explained that my parents had to cancel their airline reservation first before they can apply for a refund. Really? Why did my mom receive different instructions in May????? I know airlines are on overload now because of COVID and therefore, I am tried to be patient.

I wasn't too successful on the patience front! The representative gave me two choices, 1) cancel my parent's flight reservation or 2) wait until December, when American will most likely change the flight number and time of departure and then apply for the refund. She let me know that using option #2, would most likely enable me to get the refund faster! REALLY??? I lost it. As she wanted me to wait until December, with the HOPES that the airline would change the flight number and time. What if that doesn't happen, then what? I told her there were too many if's and I need to work the problem and with certainties. 

I learned today that American Airlines NO LONGER gives ticket holders a refund for medical excuses! DID YOU HEAR WHAT I AM SAYING?!!! So I said, if my parents don't get their money reimbursed, then what? The answer is they get credit on their account to pay for another airline ticket in ONE YEAR'S time! Also ridiculous, and as I reminded her, my dad is UNABLE to fly period. A one year grace period won't cut it. 

Given all I am balancing, today's call caused me to become dizzy while on the phone. The dizziness triggered a migraine and intense nausea. As soon as I got off the phone, I popped my migraine and nausea meds. I pushed through the issues and within two hours, I felt more stabilized. 

Tuesday, August 18, 2020

Tuesday, August 18, 2020 -- Mattie died 568 weeks ago today. 

Tonight's picture was taken in August of 2008. I remember this moment like it were yesterday. Mattie was visited by two teachers from his school, Dave and Larry. Both were coaches of the football team and Larry (on the right) was also one of Mattie's kindergarten teachers. They came over bearing gifts. A signed team ball and a signed photo of the entire team. This was when we first met Coach Dave. He and Larry supported Mattie throughout his cancer journey. They also were instrumental in the early days of the establishment of Mattie Miracle. As they volunteered countless hours at each of the Foundation's Walks in Mattie's memory.

Quote of the day: Today's coronavirus update from Johns Hopkins.

• number of people diagnosed with the virus: 5,480,487
• number of people who died from the virus: 171,679

In addition to physical and occupational therapy, we try to do cognitive exercises every day with my dad. Everything from word finds, memory games, to now Numbricks! We were introduced to Numbricks today during my dad's occupational therapy session. The Numbrix puzzle is all about making an unbreakable path using a starting and finishing number. Numbers have to connect in a horizontal or vertical consecutive path. The highest and smallest numbers are given and printed in circles. 

I would say that my dad needs more cognitive challenges as dementia has greatly impacted his ability to function. In fact, in many ways it is the dementia that makes his care far more complex than his physical limitations. Dementia is not just about losing one's memory. It impacts one's personality and temperament. My dad has really no understanding of time. He constantly checks his watch and therefore, when he requests things, he wants them done instantaneously. He will keep asking for the same thing, until his request is met. Not so much of a problem, until you understand that he fires multiple requests at you, at the same time. In reality, he can be very emotionally exhausting. He frustrates easily and can lash out. 

As we were talking today at lunch, he doesn't recall AT ALL being hospitalized twice. Once in May and once in June. I showed him a photo of him and me in the ER together for ten hours during the second week of June (for an impacted colon). He has no recollection of any of this. 

Meanwhile, Peter was dealing with our in home flood!

The flood came from the air conditioning unit in the ceiling. 

My understanding is that the wood floor is getting re-tiled tomorrow! 

Peter took Sunny to Roosevelt Island and leave it to our boy! He found a turtle!

Mattie loved turtles! Therefore, when I see turtles, I think of him!