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!

Monday, August 17, 2020

Monday, August 17, 2020

Tonight's picture was taken in August of 2008. Mattie's art therapists knew he loved Scooby Doo. So they stenciled a scene from the TV show on a ceiling tile. For weeks, Mattie, Peter, and me painted in this tile. After Mattie died, the hospital gave me most of Mattie's tiles. He did 6 of them over the course of his treatment. However, two were missing.... this one and his giant roach!

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

• number of people diagnosed with the virus: 5,435,908
• number of people who died from the virus: 170,453

This morning my dad's physical therapist came over. We introduced a new exercise to my dad. Walking on the street where he lives. It was about an 18 minute walk. Me and the caregiver trailed after my parents in a transport wheelchair. My dad's PT asked me to purchase such a chair about a month ago. So I did! The chair made a huge difference because it enables us to cover more ground.

Please pay attention to this driveway. Perhaps you can get a better idea for how LONG it is! It is over 500 feet from the front door to the gate on the street. 

My parent's house is on a flag lot. We share a driveway with the house in front of us. In order to get to my parent's house, you have to walk down Allison's driveway and then down the driveway in the above photo! Which translates to quite a walk!! When I have packages and boxes by the gate, it is a fun chore. I did buy a red wagon, because it helps schlep items from the gate to my parent's front door. 

My dad was focused only on the street. He walks with his head face down. So in essence he isn't paying attention to anything or anyone around him. However, several people that were out walking were cheering my dad on and giving him a thumb's up! 

I have noticed when watching a TV show with my dad, he has no memory for the characters in the show and can't understand one scene to the next. I wasn't quite getting why this was happening, as I did not know if he was distracted, tired, or what! In fact, when we watch TV together, I pause the show every 5-10 minutes to process what we saw, so he can follow along with us. 

Today, I went through a few memory exercises my dad's occupational therapist sent to me. In fact my dad's OT has been very kind to share many workbooks with me electronically. As some of these books are $90 or more. In any case, this is a sample exercise. So let's say, I tell my dad to remember three words... bush, tree, grass. Many of us without cognitive challenges, are coding these words as a visual, or perhaps you are seeing the connection among these words in your head. These codes help us remember. What I quickly could see is that my dad is unable to code words! He can't visualize these words or he objects these words stand for. So he sees NO connection between tree and grass per se. In addition, if you ask him to recall these words a minute later, he can't! He has no recollection. This was very very revealing to me, and helps me have a better understanding for the complexities I am seeing as we watch TV together. 

Another exercise was to look at the box of objects on the left, one at a time. Then  cover the box on the left and ask my dad to draw what he recalled in the right hand column. He was able to do it, but it was challenging and he had to do it about twice or three times until he remembered all three objects in each example. 

Today was Sunny's last morning walk in the woods behind Peter's parents home!

Apparently Miss Indie is thrilled to be home. Sunny, however, maybe a bit dejected. In Boston he had access to a backyard filled with squirrels, bunnies, and chipmunks. He got to visit a farm, play with other dogs, and get lots of attention. Summer camp I tell you!

After an 8 hour drive home, Peter walked into our home to find a flood. All our wooden floors popped up and it was a total mess. Honestly I would have lost it! As I am tired and on overload most days. 

I am sorry that Peter is dealing with this alone! See how awful this looks!!!

Sunday, August 16, 2020

Sunday, August 16, 2020

Tonight's picture was taken in August of 2008. We were home between treatments and it was a tough day! I can remember that distinctly. One of Mattie's friends dropped off a gift for us. It was a HUGE bubble maker. Peter got it out and we all went outside to try it and make bubbles. You can see Mattie was engaged and was pointing at the bubbles. Thank goodness for the daily gifts Team Mattie gave us. Some days, those gifts were the only things that brought a smile to Mattie's face. 

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

• number of people diagnosed with the virus: 5,401,803
• number of people who died from the virus: 170,019

On Friday, August 14th, my parent's celebrated their 60th wedding anniversary. Given all that we are balancing, I forgot to post these wonderful photos on the blog. But given that the blog is my institutional memory, I did not want to miss this opportunity to highlight this occasion. 

Though we go out to lunch every day (in order to inspire my dad to eat), I planned a special gathering on Friday at one of the restaurants my parents enjoy. The restaurant has a HUGE tent and we had a lot of space from other diners. It was wonderful but VERY VERY hot outside. None the less, it was a special evening with beautiful flowers, pink champagne, good company, and tasty treats. 

The flowers were glorious and made our table look very festive! Typically my dad doesn't drink, but even he had a glass of pink champagne to commemorate the occasion. 

Me with my parents. 

Pictured with my parents are Gary and Marie. My dad met Gary when he was working at Warner Bros. Gary is the head electrician at the studio and a wonderful person. Marie, his wife, deeply cares for my parents and is a born caregiver. As she has a child with a significant disability who she has cared for, for over twenty years. Gary and Marie are also big Foundation supporters. Which I deeply appreciate. I am so glad they could attend this dinner in my parent's honor. 

Gary and Marie gave my parents two mugs and two dozen home baked cookies. The mugs say....

Mr. Right and

Mrs. Always Right!

My dad has been dealing with uncontrollable irritable bowel syndrome (IBS). IBS did not take a break at their anniversary dinner. He landed up not making it to the bathroom in time, so literally I went into the men's room with him at the restaurant to help clean up. I travel with a complete tote bag filled with all sorts of supplies. So we were all set. 

After a week of dealing with uncontrollable diarrhea, I had enough. I wanted a solution. As it is impossible for him or my mom to have any quality of life, as my dad has to be tied to the bathroom. I have STOPPED him on all the meds his GI doctor recommended and have also cut dairy from his diet since yesterday. It is my hope that experimenting with his diet, we can get a better and more natural control over his IBS. As he has a handful of other health issues, and I don't want IBS to add to the issues. 

After breakfast this morning, my mom and I went out for a three mile walk. My dad was with one of his caregivers and was busy doing his PT and OT exercises. 

Along our very HOT walk, we came across an orange kitty! 

It was the day of seeing ORANGE. A neighbor has a wonderful vine. I have passed this vine in June and July. But today to my surprise was a big pumpkin on the vine. Mattie would have absolutely loved this sighting, as he loved to go pumpkin picking. 

Outside my parent's kitchen window was this squirrel. I took one look at him and laughed. I laughed because I totally appreciated what he was doing. He was trying to get some sort of coolness off the metal, as it truly felt like an oven outside.