Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.

As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter

The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

July 9, 2020

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!

July 8, 2020

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. 

July 6, 2020

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. 

July 5, 2020

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. 

July 4, 2020

Saturday, July 4, 2020

Saturday, July 4, 2020

Tonight's picture was taken on July 4 of 2003. Mattie was 15 months old and it was his first time visiting North Carolina and the beach. He was very cautious and suspect of the Atlantic Ocean! Mattie's hands were like little radar scopes. When he made a fist, that was my sign that he wasn't ready to explore and take in his surroundings. If the hand was open and the fingers fanning, that meant Mattie wanted to engage and learn more. The many wonderful signs of Mattie. This photo is still priceless to me. 

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

  • number of people diagnosed with the virus: 2,836,113
  • number of people who died from the virus: 129,654

I got up this morning at 6:45am. That is the latest I have gotten up in a month. My thinking was that no caregivers or therapists were coming today, so I did not have to have everything ready by 8am. My hope was for a more stress free day! What a joke. 

I got up, made the bed, showered and dressed. Then I went downstairs to start making breakfast for my parents. After which, I went upstairs and woke my dad up and began the morning process.... picking out clothes, getting him up, showered, dressed, and to help him downstairs. My mom is trying to learn the morning routine I have with my dad, and of course any time I train someone the process takes twice as long than if I did it myself. 

As we were helping my dad down the steps this morning, he swayed forward and became imbalanced. I have not seen this happen before in the entire month I have been here. But what I do know is he would have fallen if I did not catch and prop him up. I can't explain why he was off balance and of course he has no insight on the process. Therefore, it adds to my concerns. As I can handle my dad physically, but my mom can't. 

While my parents were having breakfast. I went back upstairs to strip their bedding to launder it and collected all my dad's towels from showering. After which, I sat down to eat breakfast. Peter ran chores and at breakfast, my dad wanted to know if anyone was coming today..... meaning caregivers or therapists. When I said 'no,' I qualified it by saying 'they may not be coming, but that doesn't mean there will be no routine or exercises.' The notion of exercising sent him over the edge and he got hostile with us. I don't mean just hostile, I would say rude, cursing, and got up from the table, leaped for his walker and stormed out of the room. All dangerous as he could have fallen in the process. There was no reasoning with him. Despite our best efforts to explain the importance of movement and exercise, he deems our requests as us "torturing" him.  

It is hard enough managing daily caregiver needs, but it is ten times harder when the person you know is no longer the same person. It is emotionally draining and this would be hard to manage if we were living in the same town, but it is next to impossible being 2,500 miles away. As I leave my parents on Tuesday to return home, I feel like I am watching a train wreck in slow motion. The train is going to derail, it is just a matter of how soon. I will return again this summer, but there are things I must do at home, and poor Sunny and Indie, left without us for a month. 

July 3, 2020

Friday, July 3, 2020

Friday, July 3, 2020

Tonight's picture was taken on July 4, 2006. We were invited by Mattie's good preschool buddy, Zachary, and his family to watch the National fireworks show from their boat. It was our first and last time on the Potomac River for Independence Day. Mattie had a wonderful time and Peter and I found it fascinating how many people are on the water for the holiday. 

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

  • number of people who were diagnosed with the virus: 2,793,022
  • number of people who died from the virus: 129,405

I got up this morning at 6am. I got myself showered, dressed, made the bed, and was about to start breakfast. When I got a call from the caregiving agency letting me know that my dad's caregiver needed an emergency root canal today. Thankfully I was here and could take over the care for the day. Naturally if I were not here, the agency would have sent another caregiver. Given that I trained three people in a week's time, they did not want me to have to repeat the process today! Which I appreciated! While training people this week, showering and dressing my dad took anywhere from an hour to 90 minutes. Whereas, when I go it, I can get it all done in 30 minutes! 

Which was a good thing, because my dad had a wound care appointment today at around 9am. The physician's assistant and his assistant came to the house, but I wanted my dad washed, dressed, and with enough time to eat breakfast and take pills before they arrived. It was a successful morning and we got it all done. 

The wound care specialist was lovely. He "debrided" the wound. A NEW term to me. Wound debridement is the process of removing dead tissue from wounds. The dead tissue may be black, gray, yellow, tan, or white. Wounds can heal faster if dead tissue is removed. Dead tissue can trap bacteria. Bacteria may lead to wound infections. Bacteria can cause odor. Wounds that have dead tissue take longer to heal. New tissue cannot grow.

This is a photo of the debrided wound. I asked the specialist how this developed and he said from being sedentary and malnourished. Thankfully my dad is eating again, but during the COVID-19 lock down, he lost his appetite and refused to eat anything other than cereal. If you have been following along, then you know my dad lost 30 pounds during Covid, refused to eat, and developed a urinary tract infection, a kidney stone, and an impacted colon. He was hospitalized twice, dealt with persistent hiccups for a week, and also had delirium. It has been a lot to manage and given how I found him on June 9th, he is more stable now. But with that said, my dad needs constant support and supervision and of course we are all saddened by his massive cognitive decline. A decline that I hold quarantine from Covid-19, a urinary tract infection, and being on Thorazine for a week to treat recurrent hiccups personally responsible for! In fact, if I did not intervene, my dad's doctor would have had him on Thorazine for longer. Instead, I researched persistent hiccups and suggested the doctor give my dad Baclofen! Which worked in one day's time! You have to be your own doctor. But I learned this the hard way from Mattie!

July 2, 2020

Thursday, July 2, 2020

Thursday, July 2, 2020

Tonight's picture was taken in July of 2008. We took Mattie to the Aquatic Gardens in Washington, DC. Every July the lotuses bloom and are glorious to see. It was an annual tradition. This was a park Mattie loved to visit. Notice that Mattie was holding a toy car in his left hand. Not unusual as Mattie never traveled empty handed. 

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

  • number of people diagnosed with the virus: 2,732,639
  • number of people who died from the virus: 128,651

Don't ask me what happens in the morning around here! I wake up around 6am, make the bed, shower, dress, prep breakfast, and then greet one of my dad's caregivers at 8am. When she arrived today, we went upstairs and greeted my dad. As we were coming up the stairs, my dad managed his way out of bed and was headed toward the bathroom. I walked the caregiver again through the process. We picked out clean clothes for him and proceeded with the showering routine. After which, we lotion and dressed him and supervised him walking down the stairs to the breakfast table. While having breakfast with my mom, the caregiver and I went back upstairs to collect towels and clothes for the wash, and made the bed. 

After breakfast, we encouraged my dad to do his occupational therapy exercises. He always fights us on this request, but he did his six exercises and then rested for an hour before his physical therapist arrived. We try to have structure to my dad's day because if not, he most likely would sit or sleep the day away. Having a routine keeps him up and moving at times, which is important for both his physical and mental health. 

My dad's physical therapist had him walking with a cane today, rather than a walker. Naturally he had a gait belt around him and held it throughout all the exercises. If my dad got off balance or began to fall, the therapist would be able to support and catch him. Of course all this exercising is physically taxing and my dad reports constant exhaustion. In fact as soon as his shower is over, he tells us he is very tired. So we are fighting his chronic exhaustion and his lack of motivation to do any activity or comply with his home exercise program. He constantly tells us we are "beating him up." Which of course is not true, but in his mind, this is how he interprets what we are asking him to do for his own health and recovery. 

All I know is that from the moment we wake up and until we go to bed, we are focused on something. My dad's caregiver is here from 8am to noon. At noon, my dad is resting until we are ready to go out of lunch. I am very aware of the challenges we are facing with the pandemic, but I have to weigh the consequences of not going out. Which would be my dad won't eat and consume fluid. That would lead to a direct failure to thrive, which was how he was diagnosed in May. In older adults, failure to thrive describes a state of decline that is multi-factorial and may be caused by chronic concurrent diseases and functional impairments. Manifestations of this condition include weight loss, decreased appetite, poor nutrition, and inactivity.

On Tuesday, I will be here for one month. We accomplished a lot in a month. Because when I arrived in LA (June 9), my dad hadn't moved from his recliner chair since being discharged from the hospital on June 3. He was wearing the same clothes for a week, and was using a urinal from the chair and not getting up to go to the bathroom. It was a bad sight, on top of which he also had delirium (serious disturbance in mental abilities that results in confused thinking and reduced awareness of surroundings). He refused food and liquid. Since that time, we have definitely made progress. Having structure, a routine, and expectations are important for us at all ages... but they are even more important as we age. 

July 1, 2020

Wednesday, July 1, 2020

Wednesday, July 1, 2020

Tonight's picture was taken in April of 2002. Mattie was only a day or so old. Since I was recovering from an emergency c-section, Peter took over all of the caregiver duties. In fact, he was the first one of us to ever change Mattie's diapers. I think this is a precious photo that captures the love of a great dad. 

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

  • number of people who were diagnosed with the virus: 2,678,202
  • number of people who died from the virus: 127,970

Last night was another night for the books. By 9pm, my dad was moaning in pain. Again, I could see he was constipated. I will remind my readers that I took my dad to the ER on June 16 because he had an impacted colon. I knew the situation wasn't as serious this time, but that I had to act quickly before it became a crisis. Now one would think that a gastro-enterologist would counsel a family of an older patient, who is sedentary and brought into a hospital with an impacted colon. Counsel us on a laxative regimen! Unfortunately as I learned all too well the health care system is fatally flawed. They may be good at dealing with a problem at hand but TERRIBLE at maintenance and prophylactic care. So when my dad was released from the hospital on June 20, no bowel regimen was provided in the discharge notes. With COVID-19, family caregivers have no interface at all with the hospital staff, therefore, if its not in the discharge paperwork, it doesn't exist. 

Since discharge on June 20, my dad has had minuscule bowel movements daily. Maybe something that looks like the size of a quarter. In fact, every time he had to use the bathroom, a nugget size bowel movement appeared and in the midst of all of this my dad was developing bad to severe gas pains. On Monday night of this week, I called the after hours number for my dad's gastroenterology practice. The doctor on call responded and it was this doctor that talked with us about a daily laxative plan! Where was my dad's doctor? Asleep at the switch! I can say this with confidence because my dad and mom saw their doctor last week in the office (I wasn't allowed back into the appointment, which was a big mistake). At no point in that visit was a laxative plan prescribed! Shame on him!!! 

Any case, last night, my mom called the practice and we spoke to another on call doctor. He understood the severity of the problem and suggested I give my dad two enemas and more senakot. I did administer two enemas, but with age it is hard to hold the fluid in for it to do its magic. So instead, after I inserted it, my dad passed the fluid right back out! It was very frustrating. I helped my dad back up out of bed (a bed which I lined with plastic sheets and chuc pads in preparation for a lot of pooping) and dressed him because I was going to take him to the ER at 10pm. After I dressed him, he said he had to go to the bathroom. It was at that point, he began to poop. In fact, he pooped during the night and had a massive bowel movement today. It was like winning the lottery. My dad told us after he woke today that he had bad dreams about having to go back to the hospital. So clearly all of this has created great anxiety. 

On top of all of this, I was up at 6am. We met a new (the third) caregiver today and trained her on my dad's routine..... getting him up, showered, dressed, given breakfast, and we did his physical therapy exercises together. Later in the morning, my dad's occupational therapist came and my dad did more strength building exercises. So my dad has had a full day, and we are right along side him. 

The challenging part of all of this is my dad doesn't like eating at home. I mean NOTHING! He prefers eating in restaurants. This would be challenging under the best of circumstances, but now with COVID, you have to be a miracle worker. For over three months my parents lived in quarantine. During that time, my dad lost 30 pounds, because he lost his appetite and desire to eat. In addition to losing a dramatic amount of weight, he also developed a urinary tract infection, a kidney stone, and his dementia advanced significantly. I blame COVID-19 for my dad's significant decline as getting out into the world is vital for his psychological, social, and physical health. 

When Peter and I arrived in LA in the beginning of June, we began to take my parents out to lunch. We only go to three restaurants we know and trust. Don't you know it, as my dad started going out to eat, he began eating and is now regaining weight! We are careful and are being safe. Yet today, Governor Newsom once again CLOSED inside dining of all restaurants in LA County! Honestly!???? I think our leaders want to kill us, because if COVID doesn't do it, then the psychosocial impact of lock down and quarantine definitely will. 

June 30, 2020

Tuesday, June 30, 2020

Tuesday, June 30, 2020 -- Mattie died 561 weeks ago today.

Tonight's picture was taken in August of 2005. That day we took him to Griffith Park in Los Angeles. A park filled with all sorts of activities for children and adults alike. Mattie was three years old and we wanted him to try a pony ride. It wasn't like this pony could go anywhere, as he was teetered to a wheel. Nonetheless, Mattie was cautious about trying it so Peter walked besides him and the pony. From Mattie's facial expression, I can see that he was trying to smile, but felt a bit anxious on the pony. 

Quote of the day: Today's coronavirus update from Johns Hopkins
  • number of people who were diagnosed with the virus: 2,629,372
  • number of people who died from the virus: 127,322

Another early morning here. Peter and I arrived in Los Angeles three weeks ago today. A lot has happened in three weeks. We packed up my parents home, moved them to a new home. Unpacked and organized everything, worked on getting utilities and major things connected and with updated addresses. All of this was exhausting. But add a health crisis on top of this, and all I can say is wow. During this three week time period, we also took my dad to the ER, he was admitted and spent five days in the hospital. It has been a lot to balance and Peter and I are working around the clock to get things stabilized here. Which is why we postponed our flights. We were supposed to fly back to Washington, DC today. But I assessed where what was happening last week, and decided there was no way we could leave. Especially as caregiver were being assigned to work with my dad during the day, and I wanted to meet them myself and see them in action. 

So far I have met two out of the three caregivers. I have gotten to know my dad's nurse (who comes once a week) and my dad's physical and occupational therapists (who each come twice a week). Since I live so far away, it is important that I know the cast of characters and they know how to directly reach out to me. But there is a lot to juggle here. As my dad needs constant support and in the midst of this the phone keeps ringing with doctors and other appointments. I am so tired that if I stop moving, I fall asleep. 

I have been trying to get a hold of my dad's GI doctor today. This is the same office that we visited last week and I screamed at the receptionist because of her lack of sensitivity. As she wouldn't allow me to go with my parents into the doctor's appointment because of COVID-19. She said only one family member was allowed back into the exam room. I get it, but we were the last appointment of the day and no one else was in the office. My presence in that meeting would have been important. The way this GI doctor's office is run is poor at best and it is close to impossible to talk to a live person!! I called the office in the morning and left two messages. I called back in the afternoon and left a third message. It is now 6pm, and still no call back! I think this is unethical and criminal! What kind of doctor's office is this? 

The reason I called was the discrepancy in medical advice as my dad's doctor prescribed one thing for a bowel regimen and the on-call doctor last night gave practically the opposite of advice. Needless to say, I can see my dad is getting constipated again, and we need a solution that will prevent this from happening and developing into a crisis. Meanwhile, the third caregiver arrives at 8am tomorrow. So this is my third training in one week's time! Training takes time, energy, and patience. Patience which is rapidly dwindling within me!

June 29, 2020

Monday, June 29, 2020

Monday, June 29, 2020

Tonight's picture was taken in August of 2005. Mattie was three years old and we took him to Los Angeles to visit my parents. It always took Mattie a few days to adjust to the three hour time difference and literally he would be up at 4am, unable to go back to sleep. So we had some very early mornings! Which meant that Peter and I were up and starting the usual morning routine of breakfast and playing. At some point, Mattie took one of his toy boxes and decided to parade around the house with it on his head! The beauty and whimsy of Mattie!

Quote of the day: Today's coronavirus update from Johns Hopkins
  • number of people who were diagnosed with the virus: 2,587,154
  • number of people who died from the virus: 126,127

Another 6am morning. Today the second caregiver assigned to work with my dad arrived at 8am. I get up early so that I can shower, get dressed, and start breakfast for my mom and me. Peter is good at taking care of himself, so I don't worry about him. When today's caregiver arrived, I had to start all over again. With training about getting my dad up, helping with toileting, and the whole shower process. Of course in the midst of all of this, there are chores like emptying urinals, making the bed, doing laundry, etc. So I had to review this whole process with the caregiver. Today's caregiver was a night and day difference from the one over the weekend. This lady was quiet, yet competent, attentive, and wanted to understand the dynamics of the family. 

Last night, while in bed, I realized that I hadn't given my dad his evening pills. One of which was a blood pressure pill. Needless to say, I won't be making this mistake again. It was a complete oversight, only because I am managing SO MUCH. Let me remind my readers that we moved my parents into their current home LAST MONDAY and TUESDAY. A move is hard enough, but with a health care crisis, good luck. In the month I have been here, I have missed one dosage of medication, which I think is remarkable. 

Yet when my dad's PT got here today, my dad's blood pressure was so high, that therapy wasn't allowed to be performed today. The therapist had to report the high pressure to the health care company, which sent the info to my dad's doctor. You can imagine how these people made me feel today. No one has any compassion for the caregiver. At all! It is disheartening and it is 7pm and I am ready to scream. 

As my dad is experiencing constipation again, the same thing that landed him in the hospital on June 16th! I just called the doctor and I have no idea what the evening will hold for us! I literally feel this situation is critical at best and that my dad needs round the clock supervision and support. 

June 28, 2020

Sunday, June 28, 2020

Sunday, June 28, 2020

Tonight's picture was taken in August of 2007. We were staying at a hotel in San Diego and I am quite sure I snapped this photo because this was a rare sight! Mattie was in his pajamas and sitting still. It took a lot to wear Mattie out, and my joke was he had two modes.... on and off. Nothing in between. 

Quote of the day: Today's coronavirus update from Johns Hopkins
  • number of people diagnosed with the virus: 2,548,143
  • number of people who died from the virus: 125,793

It was another day in paradise. I am being facetious, if you can't tell. The caregiver assigned to work with my dad yesterday returned today. Yesterday, she seemed refreshing and today she was grating, bordering on inappropriate. Why? Besides the fact that she thinks she knows better and wants to correct us on how we do things in our own home, she is non-stop chatter. Chatter that focuses on herself. You know the kind of talk that can give you an overwhelming headache? This is her. I could potentially put up with all of that, but then she is working hard to recruit us away from the caregiving agency we signed a contract with in order to work with her independently. Naturally, she would get more money if we paid her privately. But there are many problems with her suggestion! First of which is we signed a caregiving agency contract and hiring a caregiver privately who we found through the agency, would result in a $25,000 fine. Putting the fine aside, it makes no sense to put all your eggs in one basket. As people get sick, things happen, and what would happen to the continuity of care for my dad if we worked with ONE caregiver privately?

Of course my main objective is she is SO BUSY promoting herself, that she isn't diligently doing her job. She started laundry for my dad. But never put it in the dryer and folded it. What good is it if you just throw it into the washer and leave it there? The consequence is MORE WORK for my mom. I told her it was important to through out the garbage, she did not do that either, and I landed up adding that task to my already full day. Needless to say, I wasn't happy with her today and this translates directly to the caregiving agency. I tried to reach out to them today, with no avail. They were great at responding to all my messages before we signed a contract. They are not as attentive now! 

Meanwhile, a new caregiver shows up at our door at 8am tomorrow. There is NO cross training! So guess who has to start from ground zero? Correct, that is us! Frankly, I am not sure what is worse.... doing all the work yourself or having strangers come into your home and have to endure all those complexities? Prior to seeing long term care insurance (LTC) in motion, I was a big LTC fan. Now I feel like there are ways adults can save for their aging needs without the impersonal regulation of an insurance company. I don't do well with big brother standing over my shoulder telling me who and how long I can hire someone to help me. Any time government or businesses get involved in regulating our health care, problems arise. 

Any case, tonight I can say we are chronically tired, frustrated and stressed out. We would love my dad to bounce back to the way he was prior to hospitalization, but unfortunately this isn't the case. How we long for the days when he was more independent and more like himself. It is very hard seeing this transformation as my dad is pervasively tired, at times confused and disoriented, and has difficulty with every day activities. Aging is not for the meek. Case in point, the caregiver today was having a side bar conversation with Peter, while my mom was standing in the room. As if she did not exist or couldn't make decisions. Both of which are false. Naturally my mom found this offensive and it leaves me wondering why our society makes such false assumptions about older adults. 

Tired, disillusioned, and no end of work in sight. Leaves you feeling rather depressed about every aspect of life. 

June 27, 2020

Saturday, June 27, 2020

Saturday, June 27, 2020

Tonight's picture was taken in August of 2007. I remember snapping this photo right outside our hotel. The hotel had this fountain and pond, which apparently attracted flamingos. Given these lovely pink birds were in the background, I asked Mattie to give us his flamingo impression. Which is what you see him doing in this photo.

Quote of the day: Today's coronavirus update from Johns Hopkins
  • number of people diagnosed with the virus: 2,507,874
  • number of people who died from the virus: 125,504

It was a challenging evening last night. The caregiving company we are working with contacted me at around 9pm to let me know that the first caregiver assigned to us would be coming this morning at 8am. I had no time to prepare my dad for this because he was sleeping when I received the text message. Naturally my mom, me, and Peter were somewhat concerned about this transition. It is very difficult opening up one's home to strangers. My mom lived through life with caregivers years ago when her mom suffered a stroke. Caregivers turned our home upside down. Everything from stole from us, stored iguanas in our freezer, to making thousands of dollars worth of international phone calls. All of these horrible experiences remain with you! It is hard not to take them into a new caregiving situation. 

Being here in California is not only physically taxing, but emotionally very draining. As Peter and I see my dad transformed physically and cognitively and at the same time we have to help my mom come to terms with these drastic changes. This is not how either of them thought life would go, and therefore such changes are a loss. I am trying to do my best to support both of them, but I am very aware of the fact that I do not live around the corner. I am not even a state away, I am across the country. Which is very frustrating and stressful for me, as I can clearly see that without on the ground support, they will not be able to live in this rental house long term.

The caregiver that arrived today was the A team. Her name is Zhane and she is half Chinese and half Puerto Rican (unfortunately she can only work with us 2 out of 7 days). Very smart, very sensitive, and has a wonderful way of communicating and bonding to all of four of us today. I walked Zhane through the showering process, how to dress my dad, get my parents breakfast, start the laundry, and how to motivate my dad to walk and do his exercises. My dad's occupational therapist came over today and they did a therapy session outside on the patio. It was the highlight of the day. What I am clearly seeing is that my dad is more compliant to do walking and exercising with the therapists and with Zhane. Today could have been an anomaly, time will tell. All I can say is we are exhausted! I can't stand the early morning wake ups, followed by intense days! Involving both caregiving and moving my parent's into a new home. Everyone who comes to the house comments that they can't believe they haven't lived in this new house for years. Why? Because there are NO boxes and everything is unpacked and organized.

June 26, 2020

Friday, June 26, 2020

Friday, June 26, 2020

Tonight's picture was taken in August of 2007. We were staying on the island of Coronado in San Diego. That day, Peter took Mattie around the island on a bicycle. Apparently they took a break from riding and Peter snapped this fabulous photo of Mattie with the famous Hotel Del Coronado in the background. This is still one of my favorite photos. 

Quote of the day: Today's coronavirus update from Johns Hopkins
  • number of people diagnosed with the virus: 2,467,658
  • number of people who died from the virus: 125,046

Our day started early again, with the same routine of me getting up, showered and dressed so that I could wake my dad, help him shower, and make breakfast. My dad had a visit from a nurse this morning. I fired the first visiting nurse as he took my dad's blood pressure and claimed the it was normal, when I knew it was high. He then proceeded to tell me that this high blood pressure was normal for an older adult. Needless to say, I consulted with doctors on this and no one agreed with this nurse's perspective. So OUT he went. I could tell today's visiting nurse was on edge because she knows I have no problem asserting myself and getting rid of her too. After the nurse's visit, my dad decided he wanted to sit outside to watch the golfers. We bought him a portable radio too so he could take it with him around the house. 

While my dad was outside, we began returning calls, and completing the request to activate my dad's long term care (LTC) insurance plan. This plan will pay for caregiving services after we pay for 45 days out of pocket. All LTC plans have this grace period. Keep in mind that we are balancing all sorts of calls from caregiving/healthcare to all the natural calls one has to make when moving into a new home (phone, gas, power, internet, cable, change of address requests, etc). It is non-stop work and we are all exhausted. 

I sat outside with my dad for a bit and we spoke to several groups of golfers. One wanted us to cheer him on! It is like having a live TV golf game at our disposal around the clock. 

My dad is supposed to do walking and exercises daily. So far, I have had no luck at getting him to comply. We have tried to reason with him, to encourage him, and to also paint the reality of the picture. Nothing is really working and it is hard to want something for someone if they don't want it for themselves. 

Later today, my mom and I went on a three mile walk around her neighborhood. Along our journey, we passed many pooches and one cat. Not to mention glorious plants like this hydrangea. 
I can't get over it, but my parent's neighborhood has large flocks of green parrots. You can hear them before you see them! Needless to say, it is only 8:20pm here and I can't keep my head up! I am that tired. 

June 25, 2020

Thursday, June 25, 2020

Thursday, June 25, 2020

Tonight's picture was taken in August of 2007. Peter snapped this photo of us at Sea World. We knew the strategy of getting seats to see the shows, by arriving 30 minutes before each show. The sun was strong and Mattie burned easily, so I always traveled with sun screen and host of other things. Mattie loved Sea World and especially enjoyed seeing the animals and learning about how they communicated and interacted with humans. 

Quote of the day: Today's coronavirus update from Johns Hopkins
  • number of people diagnosed with the virus: 2,418,570
  • number of people who died from the virus: 124,355

Peter was up by 5am and I got up at 6am. I literally wake up, make the bed and head to shower and get dressed. I do this because if I don't, it won't happen! Since my dad was having back to back physical therapy and occupational therapy today, I had to get him up at 7:30am to shower, dress, and give him breakfast. It was another whirlwind of a day. 

My parents live on a flag lot, and the lot has a gate. How anyone has lived with this dysfunction all these years I have no idea. There is NO door bell outside the gate and NO intercom to converse with someone outside the gate. That may not sound like a big deal, but it is a huge problem. As the gate is about 400 feet from my parents front door. Keep in mind that my dad is ambulatory, but only under supervision. So if Peter and I were not here managing this gate and letting people in and out, I have NO IDEA how my mom would manage. Peter is researching wireless doorbells and entry systems! But shouldn't the owner of the house have thought of this years ago? I can't understand how other tenants dealt with this issue! As I would have lost it living here. To me this is a major safety issue. 

The first visitor today was the occupational therapist. The first therapist they assigned us, I asked NOT to return. Same with the visiting nurse. I thought both of them were incompetent. I now have a reputation with the in-home health company. So now they are only assigning us professionals. As both my dad's PT and OT have doctorate degrees and the visiting nurse is a RN. The OT did an evaluation today and he had very good suggestions on ways to help my dad regain some independence and to stimulate his cognition. I honestly believe that between physical illness and lock down from COVID, the social and mental stimulation my dad typically receives by interacting with the world disappeared and this void had enormously negative consequences for him. 

After the OT visit, my dad's PT visited. I love the PT. He actually looks like Mattie's kindergarten teacher, so I fully admit that I have transference issues. As I am fond of the therapist, because I was fond of Mattie's teacher. In any case, the PT observed that my dad is not progressing but rather regressing since his hospitalization last week. So he called the in home health agency and was able to restart the therapy sessions. Instead of it being session four, it became session one again today. He felt that my dad's decline merited MORE sessions.

In addition to all these visits, we were balancing phone calls and a conference call with my dad's long term health insurer and the in-home health agency. I am getting quite the education but one piece of advice is I strongly recommend people consider purchasing long term care insurance. This is vital because when dealing with a health crisis, health insurance and Medicare does NOT cover day to day caregiving. All the assistance families typically need which include bathing, feeding, cleaning, household chores, and transportation to appointments. 

This afternoon, we spent about an hour outside on the patio. I decided to snap some photos to show you the wonderful backyard my parents are able to enjoy. The property is like a park and it is bird heaven. Tons of hummingbirds too. 
Peter planted a Mattie Miracle rose!
I don't know if you can see this charming fountain?! But tons of birds bathe in this fountain daily. It is a birder's paradise. 
In my parent's backyard is this amazing tree..... angel's trumpets. These flowers are pollinated by hummingbirds! Which explains why there are SO many hummingbirds in the backyard. The flowers are said to look like an angel's gown, which is how it got its cute name. 
There are many many beautiful hibiscus in the backyard too! Being outside and taking a small break from chaos is very therapeutic. My dad loves being outside and he especially loves watching golfers on the golf course! On any given day, golfers chat with us through the fence and we exchange pleasantries. 

Wednesday, June 24, 2020

Wednesday, June 24, 2020

Tonight's picture was taken in August of 2007. Our hotel had parakeets. Mattie had the experience of interacting with parakeets from his many trips to the bird house located at Butterfly World in Florida. Therefore, he understood that the birds weren't going to hurt him. But instead were interested in flying around him to get a snack or treat. San Diego was a great place to vacation with Mattie, because we could do things by day with my parents, and then in the afternoon, we could do outdoor activities with Mattie. Mattie loved every minute and back then I used to wonder..... will we ever be able to stop moving and relax? Of course now being able to put his energy into context, I would much rather have a healthy and active child than one who had to face childhood cancer. 

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

  • number of people diagnosed with the virus: 2,381,538
  • number of people who died from the virus: 121,979

Yesterday was our first night sleeping at the new house. Of course anything new is always an adjustment. Yet thankfully my dad seems very happy with his new surroundings. The new house has a beautiful backyard, almost park like. I will have to take some photos to show you what we are looking at. In addition, part of the backyard faces a golf course. Hole #12 to be specific. Which is wonderful, because you can literally sit on the patio and tune into a golf game or match. Many of the golfers wave and say hi! 

Peter and I are not sure what task we are addressing first, between the move and caring for my dad's needs we are on overload. It wouldn't be as difficult if we lived geographically close, but the distance adds pressure on us to make sure things are in place for a stable transition when we return to Washington, DC. So in addition to everything else, we talked with a caregiving company today to arrange for services. My dad is already getting nursing, PT, and OT care, but when I am not here, he needs help with bathing. I also want to meet who he is assigned to work with, so we are starting services on Saturday to see how it goes. Needless to say, I am not good with letting others in to help in this manner, but I also know it is important in order to maintain my mom's health.

If you ask what we do all day, I would say our day starts early. Peter at 5am, and me at 6:30am. From the moment we get out of bed we don't stop moving. I manage getting my dad up, showered, dressed and fed breakfast. I administer pills. Then while he rests...... my mom, Peter, and I were doing chores around the house. After which, today we took my dad for a foot doctor appointment. On an aside the foot doctor's staff were lovely! Unlike my dad's GI doctor yesterday. I literally had a screaming match with the receptionist, who refused to let me go into the appointment with my parents! I told her to STOP talking to me before I throttled her. Later in the day, we ran to their old house, cleaned it and did a walk through with the property management (which lasted an hour and 20 minutes) for an inspection and a returning of the keys. Thankfully ONE HOUSE DOWN! Managing two properties was beyond crazy!

With all this said, since we arrived, I have seen a continual improvement in my dad. He is eating now, has more lucid moments, and it is my hope his exhaustion and stamina will also increase. What I have learned though is my dad DOESN'T like eating at home. He prefers going out and I imagine it provides him a social experience, choices, and structure. Right now he has three people meeting his every need, and naturally I worry what happens when I leave. Nonetheless, I will be returning this summer (without Peter), and hope to continue where I left off. 

But for now, we have my parents almost all unpacked and we are trying to manage connecting phones, cable, internet and other services. Moving isn't for the meek! Certainly it takes super human qualities to face this on top of a health crisis. 

June 23, 2020

Tuesday, June 23, 2020

Tuesday, June 23, 2020 -- Mattie died 560 weeks ago today.

Tonight's picture was taken in August of 2007. Behind Mattie and Peter was the wonderful Coronado bridge that connects the city of San Diego to Coronado. I remember snapping this photo right near our hotel. As the hotel looked onto the harbor and in the afternoons, we would take Mattie for walks and other adventures to keep him busy, moving, and engaged. 

Quote of the day: Today's coronavirus update from Johns Hopkins
  • number of people diagnosed with the virus: 2,346,937
  • number of people who died from the virus: 121,224

We checked out of the hotel today at around 9:30am. Then went to the first doctor appointment for the day. I am happy to say my dad has gained over five pounds since we have been here. My dad doesn't like drinking fluids or eating at home. We have tried! He responds to eating out in restaurants. Somehow this stimulates his attitude about food! Therefore, going out is psychosocially necessary as it helps to orient my dad to daytime, it gives him the opportunity to converse with others, and any social interchange is mentally stimulating. 

The first appointment was with their long time family doctor. He was pleased to see my dad's progress from his two recent hospitalizations. As he reminded us, that when he saw my dad at the end of May, my dad looked gravely ill. My dad had lost 30 pounds and the doctor was quite sure he had cancer. 

What I love about doctors is they only think about the physical and the data! No attention is ever paid to the psychological and social impact of my dad's health care crisis on him, my mom or us! As my dad did not just have a UTI, a kidney stone removed, recurrent hiccups, and an impacted colon. But he had all these issues, was confined to a hospital without visitors, and between this and a three month lock down from coronavirus, it altered by dad's cognition, energy level, and stage of dementia. 

After this doctor's appointment, we visited their new home and spent several hours unpacking and getting organized. I took point on all my dad's things, as he no longer has the where with all to participate and face the complexities of relocating. 

I was on the phone today with his in-home health care company as well as a caregiving company who can assist my mom when I am not here. We have a zoom call with this company tomorrow to start a request for services. Meanwhile, later this afternoon, my dad had a follow up gastroenterology appointment. This doctor maybe lovely but his receptionist is a real _itch! I typically don't lose it without good cause, but she refused to allow me back into the appointment because of COVID-19. It was either me or my mom, and it seemed more appropriate for my mom to go as she lives with my dad. But I wasn't happy with the decision and the receptionist should know better if a family member requests to go back. Do note that we were the only three people in the office. It was the last appointment for the day, and I think she could have accommodated me if she had a heart. 

This evening we took my dad out for an early dinner. He ate like a champ and we are working on getting him to consume fluid. It isn't his forte, but we reminded him that fluid will help prevent kidney stones, UTIs and an impacted colon! These three things alone should inspire one to drink!