Saturday, August 8, 2020

Saturday, August 8, 2020

Tonight's picture was taken on August 1, 2008, ten days after we learned about Mattie's diagnosis. Honestly at that point, none of us knew if we were coming or going. While in the outpatient clinic, Mattie quickly became buddies with the art therapists and the art table. Thankfully as Jenny and Jessie were life savers for all of us, and art became the productive and therapeutic diversion during our 14 months of hospitalization. 

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

• number of people diagnosed with the virus: 4,994,276
• number of people who died from the virus: 162,381

I woke up this morning to some photos of Miss Indie in Boston. Indie absolutely loves sinks. You can leave her with a bowl of water, but she would much prefer getting you to turn on the sink so she could get water on the tap!

Typically when I go to Boston with Peter, Indie hides for days under a bed. As it takes her a while to adjust to her new surroundings. But Indie has gotten her brave on and is roaming around the house and making herself comfortable!

Cats and window sills!

Miss curiosity! Thinks a napkin is a bird! 

Meanwhile, Sunny loves to visit Boston. It is like going to summer camp. He gets a lot of backyard time, to watch birds, and look for squirrels and chipmunks!

After a busy day of exploring, every good boy needs a nap!

Meanwhile, out in LA...... My days start at 6:15am, so that I can get showered, dressed, and make breakfast before the caregiver comes at 8am. 

At 8am, the weekend caregiver arrived and she heard about our weekly caregiver who quit to take another job which is offering her more work hours. I have to say I am not as angry as I was when I first heard the news about this woman leaving. Yet I have put my dad's other two caregivers on notice, that I would like to know if they are planning on leaving. Just when things were getting stabilized with care, everything once again fallen apart. I gave today's caregiver a lecture. As she says the caregiver must follow the company's policy which dictates that if a caregiver is planning to leave a job she must first alert the company and then the company alerts the client. Perhaps that is the policy, but there is a difference between policy and ethical behavior. 

Caregiving is not like your typical job! These individuals work in homes and with vulnerable people. When families invite these folks in, we are expecting them to be trustworthy and because we see them daily, a certain level of rapport and friendship forms. Therefore, if the policy is that a caregiver alerts the agency about leaving employment, the caregiver should also have the decency to let the family know of this decision. As our relationship is with the caregiver NOT the agency. It would give the family the opportunity to discuss to have some closure about the departure. 

Friday, August 7, 2020

Friday, August 7, 2020

Tonight's picture was taken on July 31, 2008. You maybe asking yourself, what was this? When we initially learned about Mattie's cancer, the next step was to explain this to our six year old. I told Mattie's care team that he LOVED bugs. He liked them, but that did not mean he wanted them in his body. So the way we helped Mattie visualize cancer, was in the form of a 'bone bug.' We explained that he had something like bone bugs inside him and that the way to get rid of them was to use a special medication called chemotherapy. So Mattie and his art therapists created a 'bone bug' out of pink clay. We then asked Mattie what he would do if he saw a big bone bug crawling around him. Naturally the inclination was to stomp on it and squash it. Which was exactly what Mattie did! This photo was of the squashed clay bone bug. By analogy, we explained that the chemotherapy was going to be like Mattie's foot. It was going to squash out the bone bugs floating inside of him. This was a great analogy and one that Mattie instantly related to!

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

• number of people diagnosed with the virus: 4,928,802
• number of people who died from the virus: 161,052

For the past two days I have noticed my dad was having issues urinating. Specifically he needed to run to the bathroom more and then after voiding, he would need to sit there for ten more minutes, while urine was simply dripping out drop by drop. Watching this was nerve wracking and I was determined today to call my dad's urologist. 

After my dad's caregiver arrived, I trailed up after her because I wanted to examine my dad's urinal from overnight, before it was cleaned. When I looked inside the urinal, I saw a solid mass. I put on gloves and retrieved it. I labeled it a bladder stone, but it is actually a kidney stone. This most definitely could explain the urination issues that I have been observing over two days. Needless to say, it was vital to reconnect with the doctor, because this doctor performed kidney stone surgery on my dad in May and also treated him for urinary sepsis. I want to make sure my dad has no other stones and the potential for an infection. So my dad will get an x-ray next week and see the doctor for follow up care. I spoke to the doctor today and I actually liked him.

Peter and his parents went to the Lobster Pool in Rockport, MA today. I have been there many times, and they wanted me to know they were thinking of me. 

Meanwhile, my boy is enjoying his outdoor time in Boston! He loves Peter's parents backyard! Specially looking for chipmunks! A pass time Mattie also enjoyed! 

All I know is I am constantly moving from one task to another! Just when I think tomorrow will be easier, it isn't! What I find particularly annoying is I am trying to figure out my dad's caregiving needs, and yet the caregiving company has their own needs! Of course they are a business and want more hours and more money. Regardless of our needs! Yet if we don't comply, I am seeing that quality and professional caregivers move on and take other jobs that offer more hours (which of course translates into more pay). 

Thursday, August 6, 2020

Thursday, August 6, 2020

Tonight's picture was taken in August 2008. Mattie's cousins came down from Boston to visit with him over the weekend. Mattie's kindergarten class gave him an electronic gaming system, so he could play it in the hospital. Mattie's cousins were showing him how it worked. However, Mattie wasn't into electronic devices and he rarely played with this gaming system. He much preferred human interaction and play that involved building and creating with objects. 

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

• number of people diagnosed with the virus: 4,873,747
• number of people who died from the virus: 159,931

This is how my morning started with a photo of my three driving to Boston. Peter is now safely there and visiting with his parents. Sunny looks like he doesn't know what hit him!

It was a three ring circus this morning. We had my dad's caregiver who arrived at 8am. The housekeepers came at 9am, the wound care specialist came at 9:30am, and the physical therapist came at 10am. It is a lot of people and things to juggle here!

When I arrived in Los Angeles in June, I found out that my dad had a sore on his back bone. The wound care specialist told me that the sore developed because of him being sedentary and malnourished. Now a month later and with weekly care, this is what it looks like (below). To me it looks about the same. The specialist told me that since the sore is on a bone and in a place that always gets rubbed when sitting or lying down, it is hard for it to heal. The dressing that goes over this wound gets changed every two days. 

Jon, my dad's physical therapist came this morning, and we went through all his home exercises. I am VERY very frustrated. I took a video of each exercise and wrote detailed notes to the caregivers and explained that these exercises needed to be done DAILY! Guess what? They were NEVER done. I was livid but couldn't express that, because it would accomplish nothing. So again, I will have to address this with each caregiver. 

One of the PT exercises involves my dad getting up and down from the chair. Try about 20 times. When my dad first started this in June, it was a challenge. Now he is doing it smoothly!

My dad goes up and down on this toes. 

Kicking!

Frankly my dad's physical issues pale in comparison to the cognitive and emotional issues. This is what can be very wearing 24/7. He can do things that aren't rational or logical and of course this can lead to emotional outbursts. In the midst of all of this, my dad has always had irritable bowel syndrome. Symptoms include abdominal pain, bloating, diarrhea, and constipation. Some people can control their symptoms by managing diet, lifestyle, and stress. Prior to my dad's hospitalizations managing this chronic disease was challenging but now it is like mission impossible. As the need for the bathroom can arise within seconds, but now he can't more as fast, nor can he get his pants off to go to the bathroom. So this causes frustration, stress, and great anxiety. 

I have provided caregiving support to my maternal grandmother and of course to Mattie. Not to mention my friend, Mary. However, no two caregiving situations are the same mainly because of the personality of the person you are caring for. In June and July, I had a very compassionate and patient demeanor when working with my dad. But now, I am taking a more firmer and tough love approach because the only way he will become more independent and be able to age in place, is if he takes an active approach and wants his situation to improve. 

Wednesday, August 5, 2020

Wednesday, August 5, 2020

Tonight's picture was taken in August of 2008. Mattie was outside in the hospital garden showing a rock to his cousin. In fact, these rocks were all around the medical library. Mattie absolutely loved escaping from his hospital room on a nice weather day to meander around the garden and to check out these rocks. I must admit, that one day Mattie took a stone from this area. To this day, this stone is our door stop! Normally I wouldn't allow Mattie to take anything that wasn't his, but it was a bad day (in a sea of bad days) and I could see holding one of these rocks and taking it with him made him feel happier. When caring for a child with cancer, you do just about anything to make the day just a tad brighter. 

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

• number of people diagnosed with the virus: 4,818,328
• number of people who died from the virus: 157,930

Eleven years old today, our world changed forever. This was the day Mattie's diagnosis turned terminal and we learned 6 weeks off of chemotherapy, his cancer spread everywhere. I will never forget that moment in time! Mattie was practically emaciated and was complaining of constant pain. Instead of doctors taking us seriously they told us that Mattie was being manipulative...... developing an eating disorder and was addicted to pain medication. Literally I wanted to lose my mind and in the process I had a 7 year old who was in pain. I demanded scans, scans that doctors did not want to do. So they started with the lowest of assessments..... a sonogram. I can still remember the tech doing the sonogram. He literally asked me what kind of cancer had Mattie been treated for! I knew that wasn't a good sign. We never made it out of the hospital that day, because once the doctor got the sonogram results, we were shuttled to do a ct scan. It was a day filled with great stress, incredible advocacy (a mom fighting a hospital system) and of course the deepest sadness knowing that we would outlive Mattie. I wanted the doctors to prove me wrong, but unfortunately MOM KNOWS BEST!

I don't think it was a coincidence that both Peter and I saw butterflies today. This was Peter's sighting on Roosevelt Island. 

Meanwhile, today was a challenging day. For various reasons. It is very unsettling to have people coming into your home non-stop, managing phone calls and demands, and at the same time trying to keep things stable. The straw that broke the camel's back was when the caregiving company called me to tell me that one of the three caregivers took another job and won't be coming back. This happened to be one of my dad's favorite caregivers too. I was actually surprised by her behavior, because I literally saw her yesterday. She made NO mention to the fact that she took another job! To me caregiving is NOT like a regular job. It can't be because you are working with vulnerable people who need care and compassion. A caregiver has to know that patients bond with them and a family relies on them! Therefore, I truly take her decision to leave personally! 

But at the end of the day, it is a doggy dog world and people who do what is in their best interest. I don't blame her for leaving per se, as we all have financial obligations and have to do what works best for ourselves and our family, but to me there is a certain respect and regard one must have when working with people. Kindness and common courtesy would be nice. Though I can see this is too much to ask for clearly! I will get over her behavior and move on, but what I see is caregiving is a very transient business. I had no idea that caregivers can actually work for MULTIPLE caregiving agencies. Therefore, they truly are in control and have no allegiances to one agency. They instead bounce around from one job to another as better opportunities arise. Great for them, not good for the patient and family, who rely on consistency and develop a bond and rapport with the caregiver.

In June, I thought we put together a good team of caregivers and I was hoping this would help stabilize things at home and help my mom. Instead, in a way, it complicates the situation. Caregivers are needed, but I am very aware of the fact that caregivers are doers which is good, but as they are doing, my dad isn't! My goal is for my dad to regain independence, but if he is independent then a caregiver and the agency have no job, and lose our money. So in a way their goal and my goal for my dad are VERY different! 

Tuesday, August 4, 2020

Tuesday, August 4, 2020 -- Mattie died 566 weeks ago today. 

Tonight's picture was taken in August of 2008. Mattie was in his first month of treatment. Our second home was the hospital, and in fact, that year, we spent more time living in the hospital than at home. That weekend, Peter's family came to visit Mattie in the hospital. Keep in mind that Mattie's hospital room was located on the fifth floor of the building in the background. Yet we were all outside! That was because Mattie's nurse, Miki, understood how important it was for Mattie to interact with his cousins in a more normal setting. So she allowed us to go to the hospital rose garden (located on the second floor of the hospital). As you can see Miki came down from the fifth floor unit to periodically check on Mattie and his IV lines. Mattie's nurses really got it right from the beginning..... that childhood cancer is NOT just about the medicine. 

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

• number of people diagnosed with the virus: 4,765,170
• number of people who died from the virus: 156,668

I did not sleep well last night. Most likely because I was stressed out about having to get up at 4am and flying across the Country today. When I arrived at Reagan National, this is what I saw. A ghost town!

While waiting for my flight, Peter sent me some photos of Sunny and Indie. Both of them were besides themselves today, because they were concerned that I was up so early! Don't you just love Sunny's expression?

Meanwhile, now that my shoes are gone, look who took over my shoe tray? Miss Indie!

I got lucky today, I had no one sitting next to me. It was delightful and made me feel less anxious which was good since it was a bumpy flight. The airline was very vigilant today about face mask wearing. In fact, if you did not comply you were told that you would be prevented from going on future flights. 

It was pouring in DC! I left grayness. 

We flew in horrible clouds for 45 minutes to an hour. With intense shaking and turbulence. The kind where you thought it was never going to end. 

Then all of a sudden, we left clouds and there was beautiful blue skies!

The grand canyon. 

Clouds and smog over Los Angeles. 

Left grayness, and landed into it! But fortunately in LA, this is only in the morning and then the sun comes out. 

The airport was like a ghost town and there was little to no traffic on the freeways. Which is unheard of. I got to my parent's home around 10am. It was a full day of travel. But I hit the ground running doing chores and got a lot accomplished. 

I am trying to assess how my dad is doing compared to when I left him a month ago. I would say his cognitive ability has improved significantly since June, but his physical issues remain. It is my hope that my presence here can help jump start a more significant improvement. 

Monday, August 3, 2020

Monday, August 3, 2020

Tonight's picture was taken in August of 2009. Mattie was driving "Speedy Red." A ride-on vehicle that we got for him. It was in a way his last request. Mattie had always wanted this toy, as our neighbor's children had one. When Mattie was well, we refused to get him this very expensive toy. We figured that it would be a very short lived fancy and therefore we were not going to make this investment. However, when we knew Mattie was dying, our attitude changed greatly. I am not sure what the learning lesson is here! In any case, Mattie loved Speedy Red, and he was a natural driver. He just understood the mechanics of driving without much instruction. Nonetheless, I was his passenger, as Mattie was tethered to oxygen and a pain pump and my constant goal as his mom was to make sure he was safe. 

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

• number of people diagnosed with the virus: 4,696,573
• number of people who died from the virus: 155,165

The highlight of my Monday was walking with Sunny and Peter on Roosevelt Island. I leave for Los Angeles tomorrow, and I certainly will miss my three some at home. 

I am not sure who was watching who! Sunny was glued to this squirrel! The squirrel was interested in us, but he wasn't about to drop this nut and leave! He held his ground! But what a racket he was making while chomping on this nut. 

Frankly in times of chaos, like living in constant lock down mode, we turn to nature. We find it freeing and peaceful, and walking on the Island is our escape from the reality of the world for an hour. 

Toward the end of our walk, we hear a loud thump! I stopped in my tracks to locate the sound! I found this Downy woodpecker not far from where I was standing. He was a brazen fellow, as my presence did not seem to scare him in the least. 

Meanwhile, Miss Indie is branching out! She is finding all the comfortable places to rest. Today she was on Mattie's bed. Sometimes I even find her on Sunny's bed! The irony is despite Sunny's size, if Indie is sitting on something, Sunny doesn't move her. He waits his turn! Indie rules the roost here.

Sunday, August 2, 2020

Sunday, August 2, 2020

Tonight's picture was taken in August of 2009. Mattie was in the hospital and struggling. Managing intense pain and gasping for air to breathe. Not to mention that his abdomen kept filling with fluid, as his cancer was taking over. On Mattie's dry erase board in his room, we posted a few things to brighten his day. One was a drawing from his good buddy Kazu and the other drawing was from Holly (one of Jocelyn's sisters; Jocelyn was Mattie's cancer buddy and mentor). The third posting was a photo of the Lego master builders who Mattie met and worked with at the Lego store on August 9, 2009. 

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

• number of people diagnosed with the virus: 4,657,207
• number of people who died from the virus: 154,779

I have been highlighting Sunny on the blog and I did not want to leave out Miss Indie. We have placed one of Indie's perches by our bedroom window. We thought she might like being up higher off the ground and with a good view (as there is a big oak tree outside the window which gets a lot of bird traffic). After several weeks of trying to introduce her to the new space, she is finally going there on her own. A real cat! 

I was listening to the radio today and heard the term "COVID fatigue." It caught my attention because I can absolutely relate to this new coined term. So I decided to look it up on the internet. COVID fatigue has been applied to both survivors of the virus as well as to people (unaffected by the virus) living their everyday lives in lock down. For survivors, apparently many of them face chronic fatigue for weeks and monthly after diagnosis. Symptoms such as profound exhaustion, trouble thinking or remembering, muscle pain, headaches, and more. Frankly this is not surprising to me as there are many diseases out there (cancer being one of them) that trigger these same long term affects on the patient and family members. 

For the purposes of this posting, I am focusing on COVID fatigue experienced by many of us, who were not diagnosed with the virus. The article is entitled, COVID fatigue is hitting hard. Fighting it is hard, too, says UC Davis Health psychologist

(https://health.ucdavis.edu/health-news/newsroom/covid-fatigue-is-hitting-hard-fighting-it-is-hard-too-says-uc-davis-health-psychologist/2020/07). The author of the article talks about a collective fatigue that we all feel about having to remain at home, wear masks, and be socially distant from others. However, at the same time she explains that this fatigue causes some people to rebel and be careless because they no longer want to abide by what our local officials are mandating. 

For the most part I understood the intentions of this psychologist, until in big bold letters I saw..... ABNORMAL IS THE NEW NORMAL. Really? I hated the term new normal when Mattie was diagnosed with cancer, and I equally despise it now. Nothing abnormal or forced upon us should ever be accepted as a NEW NORMAL, period. Putting this aside, I do agree with her, that intense stress and prolonged stress can have devastating long term effects on our physical and mental health. I saw that personally with Mattie's cancer journey and I am observing it now in people all around me impacted by the psychosocial ramifications of a five month lock down. 

The article continues on by discussing the stages of disaster stress. Meaning stages people go through when faced with a disaster. The first being that communities come together to support each other. We may see acts of kindness from those around us. I get what she is reporting, but I can safely say I did not experience this where we live, in the middle of the city.  After this kindness stage, comes the disillusionment phase. Which is where we are now as a society, in which we have lost our optimism and start to have negative or angry reactions. Specifically the article points out that:

1. “Many people are exhausted by it all.” 
2. “Some are saying they don’t care if they get COVID-19. They’d rather risk getting sick than stay home or be careful."
3. "Others have simply stopped listening to health leaders and science.”

Any and all reactions to prolonged stress are understandable to me. Yet how do we cope with our feelings and reactions while still maintaining our own safety and the safety of those around us? This is the BIG question and I am sure the answer is different for all of us. But two things I know are mentioned in the article and that I have found helpful and these are: 1) walking and 2) talking. Things that Peter and I do daily. Sunny is truly our mental health puppy! He gets us out, exploring, engaging, and talking regardless of the weather. However, I do not discount gratitude either, which was also mentioned in the article. Having seen Mattie get diagnosed with cancer and die, and watching my dad deal with his own health issues, I have learned that if you have a healthy day in your life, it is a gift. I do not take it for granted and though I would be the first to tell you I HATE lock down and wearing a mask, I am aware of what I do have...... my health and the safety of our home.