Saturday, July 11, 2020

Saturday, July 11, 2020

Tonight's picture was taken in July of 2007. We typically took Mattie up to Boston to visit Peter's parents in July. That day, Mattie went out to the front yard and was swinging on the tree swing. I love his big smile! Prior to doing two years of occupational therapy, Mattie HATED swings. However, over time and with the help of his therapist, Kathie, Mattie overcame many of the issues he initially presented with. In fact, by the time Mattie entered kindergarten in the Fall of 2007, his teachers had NO IDEA that he had experienced issues with sensory perception and speech! It speaks to the power of early intervention. 



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

• number of people diagnosed with the virus: 3,239,296
• number of people who died from the virus: 134,712

Yesterday we went to Home Depot and bought a bunch of plants for our deck. Typically our garden is planted in April. But too much has happened this spring for that to happen. Planting in the summer is not ideal, but seeing greenery helps our mood and it is something that we both enjoy. 

This morning, I snapped this photo of the garden from Mattie's window. Nothing was planted yet. It is hard to see from the photo, but the deck was a mess. There were leaves everywhere from the Fall and Winter, and many of our perennials had dead leaves and flowers on them that needed to be cleaned up. It took me about 90 minutes just to clean and then later in the day we began planting. It is my hope we can finish it tomorrow, and I will then post some pictures. 

Since we wanted to visit a garden nursery today to purchase a lemon tree (my requested birthday gift), we decided to walk Sunny on the Accotink Trail. It was the perfect place to walk, because it was shaded with trees and much cooler than walking in the blazing sun. Sunny loved it and we met many people along the way who admired Sunny. 

Beauty along the trail! 

Then we went to the Merrifield Garden Center. I haven't been to this Center in over a decade. We used to shop there for our Christmas tree. Since we haven't bought a Christmas tree since 2007, you can do the math on how long it has been. 

Sunny walked with us as we picked out the tree and some other things, but it was too hot for him outside. So I took him inside the air conditioned center and he sat on the AstroTurf display and had water. 

I have spoken to both of my parents today! This entire week, I have been on the phone 6 or more times a day with them. Thankfully before I left, I met each of my dad's caregivers. They are wonderful women, and cover different days of the week. My dad only has support from them four hours a day, and the rest of the twenty hours, my mom is managing. Which is why it was a hard transition for her when Peter and I left. As I tell my mom, we take it one day at a time. 

Friday, July 10, 2020

Friday, July 10, 2020

Tonight's picture was taken in July of 2007. Mattie was five years old and in a way it was a summer of innocence. Before childhood cancer emerged into our lives. Mattie looked like the picture of health and he was happy. He loved his pool on our deck each summer. Ironically as he aged the pool got bigger and bigger. So much so that we had more pool and less deck. I can't explain why the pool was without toys. Perhaps Mattie had just gotten in and was figuring out his plan. I say this because the pool wasn't about playing in the water, it was about interacting and playing with this toys in the water. On any given day, this pool was filled with cars, trains, and whatever else Mattie brought down from his room. 

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

• number of people diagnosed with the virus: 3,163,505
• number of people who died from the virus: 133,847

I had high hopes of going to the DMV today to renew my driver's license and get a Real ID. My license expires this month on my birthday. I completed the application and got all the documents needed to obtain a Real ID. I got up early and wanted to get the process done since I am going back to Los Angeles and need a valid driver's license. When I got to the DMV, I was thrilled to see no lines and no one there except for a greeter outside the office. The greeter proceeded to ask me if I had an appointment. Of course not! I have been out of town for a month and had no idea that appointments are now required! I tried to explain to her that it was important I get this done and since NO ONE was there, couldn't she allow me in!? The answer was.....NO! NO! NO!

I wanted to throttle this woman! She is lucky I am a non-violent person, because right now my fuse is SHORT! The DMV looks a lot like our COVID-19 testing centers...... empty. I am sick of this and all these regulations on my life. Life is hard enough. In any case, I got home and went onto the DMV system and the next available appointment I can make is in mid-October! I have no choice, I must wait for October. I printed out all the documentation from DC which states.... DC DMV has extended the expiration date for all documents expiring March 1 through the duration of the public health emergency, including driver licenses, identification cards, vehicle registrations, inspections, ticket payments and ticket adjudication responses, until 45 days after the health emergency concludes.

In the midst of dealing with this chaos, I get several photos from my mom! The ceiling in their family room (where the TV is located, along with my dad's recliner) fell! Not only fell but a ton of water burst out of the ceiling and all over the floor and TV. I honestly believe that caregiving from afar is a nightmare! There are times I want to just scream, because I am totally stressed out and am not on the ground to fix anything. My thinking was I would come home and regroup and rest, to prepare for my next month of 24 by 7 work. But it has yet to happen. I am either on the phone or dealing with issues on line! 

Plaster was all over the floor and came inches from my dad's chair. When I was moving my parents into the house, I noticed that the ceiling had been patched and I deduced the house had experienced water damage in the past. With the emphasis on the past. When I confronted the owner of the home about this today, he denied there was ever a previous problem! He can deny it all he'd like, I know what I saw and shame of me for assuming that the problem had been corrected!

Given we planned the virtual walk (which was a huge undertaking) and were in California for a month, I never planted our garden. We could have just skipped it for this year, but we decided to go buy some plants today. We will be planting this weekend. We need something to brighten up our surroundings, given the intense stress we are living with each day. 

Thursday, July 9, 2020

Thursday, July 9, 2020

Tonight's picture was taken in July of 2007. Mattie was five years old and was visiting Boston. That day, Peter's brother took us out on his boat. Mattie had an adventure with his cousins and enjoyed the whole experience. Which is no surprise, as Mattie always wanted his own boat (not a toy boat) and was saving his pennies in a piggy bank for a future purchase!

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

• number of people diagnosed with the virus: 3,088,913
• number of people who died from the virus: 132,934

Seems like it was another busy day. Sunny had to go to the vet today for two vaccines and we decided he had to be groomed. We haven't groomed him since February. Sunny went from being groomed monthly, to not being washed and groomed for five months. Between COVID and Sunny's knee surgery, he was unable to see his groomer. Also due to the pandemic, I believe the grooming place we had been going to for a while folded. So we decided to visit Sunny's veterinary clinic for grooming services. The good news is Sunny is now 63 pounds. He has lost 7 pounds and the vet feels he is at a much more normal weight. So between losing weight and his fur cut, he is feeling and looking better. 

In addition to Sunny seeing the vet, I went back to the dentist today to get permanent crowns for two of my teeth. Teeth that received root canals in March. I have had quite a time of it with my teeth during COVID, as I needed three root canals, followed by crowns. I am hoping I am done, as it has been a laborious and painful process. 

Though I am maybe in Washington, DC, I had several phone calls and emails with either my mom or my dad's care providers today. Anyone who thinks long distance caregiving is easy, hasn't done it. It is certainly less exhausting than on the ground caregiving, but there is still a lot to juggle. Peter and I have reflected on 2020, and it has been a horrible year for us:

1. Peter's company let most of management go, and therefore, he activated his severance package and left the company. 
2. Peter's mom fell down the stairs and severed her spine and needed spinal surgery and a pacemaker.
3. Sunny tore his ACL and needed knee surgery. Which was an expensive proposition and required 12 weeks of rehab.
4. My three root canals. 
5. My parent's move from one house to another. 
6. My dad's hospitalizations and the psychosocial impact of COVID affected his physical and cognitive health.  

Two happy campers... Sunny is sitting on the air conditioning vent and Indie is taking in the sun. 

Our girl! Indie came into our lives 4 years ago this week!

Our well groomed boy!

Wednesday, July 8, 2020

Wednesday, July 8, 2020

Tonight's picture was taken on July 13, 2008. Mattie had his mouth open because he was showing us he had a loose baby tooth. It is hard to believe that this photo was taken only ten days before Mattie was diagnosed with cancer. He looks like the picture of health, doesn't he?












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

• number of people diagnosed with the virus: 3,035,231
• number of people who died from the virus: 132,041

It is hard to transition back home after being gone for a month. Mail and packages have piled up. Both personal and for the Foundation. We are still digging out. Everything needed to be done..... watering plants (though some died), grocery shopping (as we had no food in the refrigerator), and of course picking up Indie and Sunny! 

Though the transition is hard for me, it is even harder for my mom. She has gone from having me and Peter, to now just herself and the caregivers 4 hours a day. Peter and I can do the work of ten people, so we can make things look easy to do, but NOTHING we did in Los Angeles was easy. Which maybe why we feel sheer exhaustion. I have spoken to my mom today maybe 5 times because in addition to this health crisis, she moved houses. So it is natural she doesn't know where everything is. She wouldn't because I organized it and put everything away. I know where everything is and where I put things makes sense to me, but it may not to my mom. I refer to this week as the week of transition, and as such I expect for all of us to face many bumps along the way. 

Check out this happy face! Sunny was thrilled to see us and came bolting out of Pender Pet Retreat! Pender is a much better fit for Sunny than his last boarding facility. Pender is situated on beautiful land. They have their own wooded path to walk dogs and Sunny got three walks a day! Just like at home. His last boarding facility provided no walks! Sunny always came home very agitated! 

All the people working at Pender are professional and love animals. They kept my Sunny for a month and they grew to love and bond with him. While we were away Sunny got very anxious and it affected his stomach and he had blood in his stool. The vet on-site examined and  treated Sunny with antibiotics and probiotics. He is fine and feeling good! He even continued his physical therapy at Pender, so he did not lose ground after his TPLO surgery in April. It is a great boarding facility and so happy Sunny's surgeon recommended it to us. 

Sunny and Indie reunited at home! They gave each other a big greeting! It involved a lot of sniffing! Sunny got a big afternoon walk and Indie got some time outside on the deck. These are happy campers and what is wonderful to see is neither of them came home unhappy or anxious. Which of course was my worry. 

Tuesday, July 7, 2020

Tuesday, July 7, 2020 -- Mattie died 562 weeks ago today.             Tonight's picture was taken in July of 2009. Mattie was in the physical therapy outpatient clinic at the hospital working with Anna, his PT. The goal back then was to try to rehabilitate Mattie so that he could go back to school in the Fall of 2009. We were naive at that moment in time. Of course a month later, we learned that Mattie's cancer metastasized and therefore the notion of physical therapy, rehabilitation, and the hope for an illusive cure all came to an end. Nonetheless, despite the pain and exhaustion Mattie experienced each day, he tried his best to comply with what was asked of him.

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

• number of people diagnosed with the virus: 2,993,760
• number of people who died from the virus: 131,457 

It is midnight and we are finally back in Washington, DC. It has been a long day. Which started at 6am. It was difficult to leave my parents, as they need a lot of support on a daily basis. Of course without us there, my mom had a difficult day. I know what these days are like and I also know how challenging it is to caregive without hands on support. 

What am I posting a photo of? Try LAX! One of our country's busiest airports. In fact, I call this airport the zoo, because it can take 40 minutes to an hour just to drive into the airport. There is usually terrible traffic. If you don't allot 4 hours before your flight to get there, you typically won't make your flight. 

But thanks to COVID-19 (the only positive), traffic in LA is almost non-existent and the airport was like a ghost town. This was what we saw when we arrived at the airport today. No cars, and not a lot of people! That was glorious and less stressful! But that is where it ended because every seat on the plane was taken. 

This was our view of Los Angeles! If you look closely you can see the Queen Mary in the harbor. She is now a museum and hotel in Long Beach. 

The beauty of the clouds. I typically don't sleep on planes, but I am exhausted and spent more of the time asleep than awake. 

Flying into the Nation's capitol. 

We flew over Georgetown University. I will never forget this astroturf! I stared at it from Mattie's hospital room for months. I grew to hate it and everything it represented. To me the turf represented freedom and life without cancer. Both of which we did not have and I hated being reminded of this fact every time I looked out the window and saw healthy college students playing and living their every day lives. 

Monday, July 6, 2020

Monday, July 6, 2020

Tonight's picture was taken in August of 2003. Mattie was 15 months old. We took him to visit my parents in Los Angeles. In fact, it was an August tradition. Mattie loved to travel and to have adventures. That afternoon in my parent's home, we were trying to entertain Mattie. Peter brought him to the piano and Mattie was tapping away at the ivories! 

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

• number of people diagnosed with the virus: 2,931,142
• number of people who died from the virus: 130,248

Don't ask me what happened to today! It went by so quickly, moving from one task to the other. I got up at 6am, to do my usual chores. At 8am, one of the caregivers arrived and I walked her through the many check lists I have developed. Of course I could write things up, but I find NO ONE reads, so I literally have to walk through the process with each of them. One learns by doing! 

See this portion of the kitchen counter? It is filled with a master calendar, a listing of PT and OT in-home exercises, a chart to keep track of blood pressure and bowel movements and a notebook for caregivers to write a listing of the activities performed daily. 

There is a lot to manage here on a given day, and right now Peter and I have been working around the clock. Which makes one wonder what happens when we are both not around? The answer is still out on this and I will find out quickly this week as I return home tomorrow. 

Today was a juggling act. I helped to get my dad up and showered because his physical therapist was coming at 9am. It was going to be a shortened session because my dad had a 10am doctor's appointment. I made this appointment because I wanted to know if there was a medical explanation for his exhaustion. He literally wakes up tired and it is next to impossible to get him to comply to do any of his in home exercises. 

Any case, the physical therapist observed my dad going up and down the stairs twice today, since I reported two times he was unbalanced walking down the stairs. In addition, the therapist discussed why following the in home exercise program is vital. It was important for my dad to hear this and for him to understand why participating in these exercises is mandatory for independent living. 

Literally from therapy, we packed my dad up in the car, along with the caregiver and drove to the doctor's office. Given our conversation and blood results, there is no physical reason for my dad to be tired. Other than age, recovering from two hospitalizations, and lack of motivation. I can't quite say I have great confidence in the doctor. But he has been my parent's physician for many years. 

Since we are leaving tomorrow, there are so many chores to still get done. So I am signing off and in hopes that I can figure out this week how to be useful from afar. Though I know quite well from my own situation with Mattie, when you are caregiving full time, the only real support is that provided on the ground. 

Sunday, July 5, 2020

Sunday, July 5, 2020

Tonight's picture was taken in July of 2009. It was the fourth of July weekend and our friends invited us away for two days. When I say away, it was about an hour's drive from where we are in DC. Though I was hesitant to do this, Mattie's doctor approved the trip, as she felt the change of scenery would be good for all of us. So literally we packed up the house and our pharmacy of supplies and went for a weekend away. This may look like a happy photo, but this was a HORRIFIC trip for us. Mattie got to see what kids his age were doing and he was very attuned to the fact that he was different. This difference made him extremely agitated and depressed. He lashed out at us and was beyond miserable. Looking back, did we make the right decision to take him away? Probably not, if given the chance to do it again, I wouldn't have gone. But I did not know how it would go, and therefore, I felt it was worth the try. 


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

• number of people who were diagnosed with the virus: 2,874,396
• number of people who died from the virus: 129,870

The highlight of our July 4th, was watching the fireworks in Washington, DC and NYC on television. They were absolutely extraordinary and I can only imagine what this show was like in person. Living so close to the Washington National Mall, so we can usually see the fireworks from our home! 

My dad loved seeing the fireworks and was still talking about them today! I have never seen Macy's firework display in NYC, but it was brilliantly done, and of course it featured Frank Sinatra singing New York, New York. 






If you read yesterday's blog, then you know we are struggling to get my dad to do any of his daily occupational and physical therapy exercises. Each time we ask him to do them, he tells us he is TOO tired, doesn't want to do them, and that we are torturing him. We have tried empathy, we have tried rationalization, and yesterday I even tried down right a brutal reality check. No tactics have worked. Keep in mind that we don't watch him when doing his exercises, we participate along. I never ask someone do something I won't do myself. Nonetheless, I have had NO success at getting him to comply. 

I therefore wrote to both his therapists (OT and PT) and I explained the problem. One therapist said that my dad needs tough love. Did that, done that, and it doesn't work for him. I am not working with a patient who is cognitively intact to begin with, so this makes rationalization (which is what tough love is based on) ineffective. I am taking my dad to the doctor tomorrow to discuss the chronic exhaustion and to have blood tests to rule out a physical explanation for this fatigue. Once we rule that out, then the only conclusion I can come to is we are dealing with a motivational and psychological issue. 

My dad did make a short facetime call today to our cousins in New York. This was a positive connection for all us on many levels, and I am encouraging my parents to do this weekly. As it is an excellent outlet to talk to people you love, but also people who understand what you are facing each day. As Tuesday grows closer, I land up feeling very anxious because I honestly do not know how things will continue on when I return to the East coast. I am not touting my abilities, I am just a keen observer and assessor of situations. Geographical distance is not the best, but in a crisis, it makes things 100 times harder.