Monday, January 18, 2021

Monday, January 18, 2021

Tonight's picture was taken in January of 2009. I will never forget this day! Mattie had a bone scan to see if new tumors had formed. What should have been a one hour test turned into three hours. Why? Because the tech and radiologist kept seeing things on the scan and therefore wanted more and more images. I finally confronted them and connected them to Mattie's surgeon, who explained they were seeing scar tissue from where prosthetics were placed in Mattie's arms. It is very hard to sit still for a bone scan and Mattie was starving, as he couldn't eat or drink anything to prep for the test! I promised Mattie that we would take him to the Japanese restaurant on the hospital's campus if he complied with the testing. Somehow Mattie managed to endure the testing and this photo was taken at the restaurant. As a treat, Mattie's art therapists and child life specialist also came with us. The man cooking the food at our table, was playing a game with us. He wanted to see if he threw a shrimp at us, who could catch it in our mouths! As you can see, Mattie was laughing watching shrimp flying in the air. 

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

• number of people diagnosed with the virus: 24,045,025
• number of people who died from the virus: 398,588

It was my second full day back in Washington, DC. I came back exhausted from Los Angeles, but it did not really hit me until today. If I stop moving, I fall asleep. I am unable to concentrate on anything, and have yet to return to doing my Mattie Miracle work, which has piled up since I left! I could feel bad or guilty about this, but it serves no purpose. So instead, I am trying to ease back into life without being a caregiver. Which means resting and regaining my physical and emotional strength. 

Sunday, January 17, 2020

Sunday, January 17, 2020

Tonight's picture was taken in January of 2009. Mattie was home between treatments and a teacher from Mattie's school came over to give him a piano lesson that day. This teacher was NOT a music teacher at the school, but did know how to play the piano and was eager to teach Mattie. It was her suggestion, which I appreciated. The keyboard in front of Mattie was given to him by Jerry and Nancy (the dynamic musical duo who volunteered at the hospital and became attached to Mattie). I will never forget the kindness, care, and compassion shown to us by Mattie's support community. 

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

• number of people diagnosed with the virus: 23,871,070
• number of people who died from the virus: 397,008

What a time to live in DC! The city is in complete lock down, over and above COVID. I swear I am in a developing nation, not in the USA. This is the sight we have in front of our building. National Guard and police completely blocking the street! Basically no way to get to the National Mall!

Beside that sight, we also have TENTS all around us in front of our building! Why our complex is doing nothing about this is infuriating, as they have a lot more clout within the city than ONE PRIVATE RESIDENT! I left DC in December and I came back to a major encampment!

This is the encampment I am referring to! In addition to the tents, these folks urinate, defecate, leave garbage, and smoke pot at our doorstep! Of course in the eyes of DC government, I AM THE ONE WITH THE PROBLEM! 

This is quite a welcome home! We are surrounded by military trucks, National Guard HOLDING automatic weapons, and bridges and street closed for at least a week. 

Saturday, January 16, 2021

Saturday, January 16, 2021

Tonight's picture was taken in December of 2006. Mattie was four years old and part of our family holiday tradition was to go to the US Botanical Gardens. They always had amazing festive flower displays and sculpted models of DC buildings out of plant materials. Mattie and I posed in front of the US Capitol! Peter and I haven't been back to the Gardens at Christmas time since Mattie died. 

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

• Number of people diagnosed with the virus: 23,707,002
• Number of people who died from the virus: 395,195

I got up at 4am this morning, in order to get showered, dressed, made my mom breakfast and then left for the airport at 5:30am. This as my take off photo out of LA! It was another glorious sunny day! 

Not only did I go through a metal detector at the airport, but I went through the 360 scan as well as a pat down! Then TSA also screened passengers a second time right before boarding the plane to DC. So I could feel the heightened security even before returning home. 

Beautiful from the air! I had the blessing of having NO ONE next to me. Which was nice because I really need 4.5 hours to unwind, rest, read, and be on my own time schedule. 

Classic DC! Grey and overcast. We get MORE grey days than anything else. 

Our home is surrounded by the National Guard, who each are carrying automatic weapons. Am I in the USA? 

Fencing everywhere!

Surrounded by military trucks and National Guard. 

Outside our bedroom window. Peter says its impossible to sleep at night with lights and noise!

A greeting from Miss Indie!

An anxious pooch! Wants to know what on earth happened to me!???

Friday, January 15, 2021

Friday, January 15, 2021

Tonight's picture was taken in December of 2006. Mattie was six year old and was posing in front of our Christmas tree. Each year that Mattie was alive, I featured a photo of him on the front of our family holiday cards. This was just one of the photos in a series I took that year. It wasn't the photo I selected for our card, but it is definitely one I love. It is hard to see, but our tree had many ornaments that Mattie handmade and I also had a holiday ornament for each family member who had died. 

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

• Number of people diagnosed with the virus: 23,520,563
• Number of people who died from the virus: 391,922

It was my last day in Los Angeles. I feel like California gave me a gift today of an 80 degree day. It was absolutely beautiful out. Though I did not spend much time outside, every afternoon around 4 or 4:30pm, my mom and I go out for a walk while my dad is resting. Typically it gets cooler at this hour, but not tonight. It felt like spring. Absolutely glorious. 

It was a very FULL day. I did about three loads of linens as I disassembled the spare bed my mom uses. She stays in the guest room when I am here because my goal is for her not to worry about my dad, but to sleep and wake up on her own time schedule. I did cognitive and physical therapy exercises with my dad, completed all paperwork my mom gave me, printed out and attached the alarm company emergency number to every telephone in the house, cooked a full meal, cleaned and did more cleaning, vacuumed, walked four miles with my mom, packed, and the list goes on! 

Today's linner.... Broiled Italian sausages, corn on the cob, string beans, sautéed mushrooms and peppers. My dad likes variety and he doesn't like left overs, so it means cooking..... and cooking all the time!

Perhaps I am just tired, but right now my outlook on just about everything is NOT positive. 

After dinner, my dad found this math quiz in a magazine he was looking at. He was getting frustrated and gave it to me. He wasn't just unable to complete it, but he did not even understand the concept of lining up numbers and adding them by column. This was truly shocking to me because my dad had an advanced accounting background. He understood numbers and how they related to each other. Given his cognitive decline, even what was once intuitive to him is now gone. 

Thursday, January 14, 2021

Thursday, January 14, 2021

Tonight's picture was taken in December of 2006. Mattie was four year old and I asked my boys to pose in front of our Christmas tree. They both had their Santa hats on and I loved the big hug Mattie was giving Peter!

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

• Number of people diagnosed with the virus: 23,308,882
• Number of people who died from the virus: 388,531

Today was a hellish day! It's NOT what I did, but what I didn't do! At one point, I was balancing the electrician, the alarm company rep, the owner of the house and his insurance agent, and a phone call with MetLife about long term care insurance ALL AT THE SAME TIME. Frankly at one point today I wanted to absolutely SCREAM! I am so so tired and the amount of work here is endless. I don't know why life here is SO frenetic, stressful, and debilitating. Not a minute's peace and though today was 80 degrees, I never sat outside to enjoy. There is just NO time. On top of everything else, I had to take my parents to the notary (which seems like our 4th or 5th visit to this person) and then took my dad's watch to the jeweler. He insisted the watch needed a battery! I kept telling him that nothing is wrong with his watch, he is just constantly adjusting it and therefore it never says the right date. I couldn't listen to the battery lament one more minute, so I had a professional look at the watch! The watch was fine and like I had said, he kept playing with the date so that when the watch was at the 12 position.... 12pm, became midnight and therefore the date moved to the next day. We corrected the issue! 

In the midst of this thoroughly chaotic day, I made lamb chops, asparagus, artichokes, baked potatoes, and a tomato salad for my dad. If I never see a kitchen again that will be too soon. But I couldn't even eat in peace as MetLife called the moment I sat down, and had to deal with them. Then when off the phone, my dad had to run to the bathroom. NO PEACE AT ALL! SIGNING OFF.....EXHAUSTED IN LA! 

Wednesday, January 13, 2021

Wednesday, January 13, 2021

Tonight's picture was taken in December of 2007. I remember snapping this photo because I absolutely loved Mattie's eclectic look! He had his Santa hat on, his duck boat  tour whistle in his mouth, Peter's baseball hat and one of his Peter's shoes on! Not to mention his sunglasses on, when he was inside with no sun around. The beauty and whimsy of Mattie. 

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

• Number of people diagnosed with the virus: 23,053,424
• Number of people who died from the virus: 384,343

Another busy day in 'paradise.' It is amazing what I accomplish in one day! It may seem like I can work these long days without consequences, but I have to admit I am tired. I started prepping linner at 7:30am. If I don't, it will be impossible for me to serve a full meal by 1pm. I say that because by 8am, I am juggling caregivers, health care visits, phone calls, and the list goes on. 

This morning a representative from the alarm company came over. I walked through the entire house and property with her, and then for two hours we went through options. I learned about "glass breaks" today! Which are very needed as my parent's house has floor to ceiling windows. 

Glass break detectors complement door and window sensors by monitoring sound or vibration. ... When they detect the frequency or shock waves associated with glass shattering, they sound an alarm.

The alarm person loved how pro-active I was being and especially loved the bicycle lock I recently installed on a gate near my parent's house! Together she and I went around the property placing alarm yard signs and other signage. I like their new service we signed up for because it involves access to armed patrol and response 24/7. 

In between all sorts of tasks, I wanted to share a photo of my upside down pineapple cake. It turns out to be delicious and it is super easy!

One of the things I made today was pasta with a caramelized onion sauce. This sauce takes about three hours to cook, as it takes a while for onions to cook property. But the recipe is delicious and it reminds me of my maternal grandmother, who used to make this dish for us all the time. 

While eating dinner, all three of us were chatting. My dad used to LOVE LOVE LOVE going grocery shopping. Now (putting COVID aside), he has NO interest in going into a store. Tonight I asked him why? His response was.... "I'm disabled!" This type of labeling drives me batty because in all reality my dad is physically strong and though he uses a walker and needs assistance at times, he can ambulate. I feel like I have to constantly remind him NOT to view himself in such a negative manner. With that said, he has this view on one hand, and on the other hand he was telling me and his caregiver that he worries about his current house when he goes overseas! Or when he comes to visit me in DC! All of this points to his cognitive impairment, as he has no insight at all that he is no longer able to travel independently much less function on a daily basis without his caregiver. 

So I have that dynamic to balance as well as the emotions my mom feels about my dad's decline and her discomfort with having strangers coming and going in her house all day! It is very difficult being a caregiver 24/7, with no relief or break in sight. I honestly do not know what the solution is given that I am 2,500 miles away. As it is, I am here every other month, and until this trip, I thought I was being helpful. However, as more time goes by, I notice that my mom is progressively more and more exhausted and therefore, even my visits every other month don't seem to be cutting it. 

Tuesday, January 12, 2021

Tuesday, January 12, 2021 -- Mattie died 589 weeks ago today.

Tonight's picture was taken in December of 2007. Mattie was five years old and that evening we took him to Brookside Gardens. Their light display was wonderful and it involved walking through the Gardens, which Mattie loved. Despite that it was freezing, it was a real adventure and one I will never forget. 

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

• Number of people diagnosed with the virus: 22,832,420
• Number of people who died from the virus: 380,540

 

Given all that I juggle each day, I find that setting up linner (lunch/dinner) at 7:30am is my best time. Mainly because by 8am, my dad's caregiver arrives and from that point on until noon, I am working to manage her as well as helping my dad with his cognitive and physical therapy exercise. 

This morning, I put together a mini-Thanksgiving dinner. I have to admit the last time I ate a turkey drumstick was when I was a child! Whenever I have cooked a turkey, I always reserve the legs for my guests. 

This morning was a thorough show! I am trying to process through all the paperwork my mom gave me. The problem is most of the phone calls I need to make regarding these documents involve having my dad on the phone. Which means that he has to be cognitively sharp to do this, so we are talking 8am to noon. After noon, my dad gets tired and by 3pm, he is fogged out. I truly do not like making these personal type calls with my dad's caregiver present, but I have no other choice. The first call was about insurance and literally I was in the que, waiting for 60 minutes until a representative got on the phone. By that time, I was ready to scream. Mind you after waiting for 60 minutes, the representative couldn't even answer any of my questions! That always instills confidence! 

After that call, I then called my parent's alarm company and spoke to them about enhancing their service with nightly patrols. A representative from the company is coming over tomorrow morning to talk with us about this service. Given my intruder experience on Saturday, I am working the problem the best I can. 

This afternoon, I installed a bicycle type lock on this city gate. As the intruder walked along the LA River, and opened this gate and helped himself in. 

This evening, after cleaning up linner, I baked an upside down cake, and then went for a walk with my mom. These walks are necessary for our mental sanity. While walking we noticed this big green ball of leaves in a sycamore tree. After doing some research, I learned this was a drey! I never heard of a drey before. A drey is the nest of a tree squirrel or a flying squirrel. Dreys are usually built of twigs, dry leaves, and grass, and typically assembled in the forks of a tall tree.