Saturday, November 28, 2020

Saturday, November 28, 2020

Tonight's picture was taken in December of 2008. As you can see, Mattie's left arm still had a cast on it, as did his right leg. Mattie was unable to walk independently, and he reverted back to sliding his backend along the floor to get around. Mattie always wanted to learn to play the piano. Prior to his diagnosis, I enrolled him in lessons. But unfortunately Mattie was never able to attend. Nonetheless, that day, Mattie got himself to the piano bench and started creating his own musical pieces. Our composer! 

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

• number of people diagnosed with the virus: 13,233,022
• number of people who died from the virus: 266,009

My alarm went off at 6am, and I did not want to move. But I knew I had to, so I got showered and dressed and began my morning of chores. Given that my parents both got the second dosage of the shingles vaccine yesterday, I was prepared for anything today. As I suspected my mom came down with bad side effects. She was achy, fatigued, her eyes were heavy, she had a headache, and in my opinion she had to go back to bed. She refused. So I started her on Tylenol and Advil every four hours, alternating each every two hours (a trick I learned from several doctors). I gave my mom breakfast and then she sat in a comfy chair with heating pads, blankets and pillows. She has slept most of the day. 

Thankfully my dad's caregiver was here today. Because after we did an 18 minute walk with my dad and brain exercises, I hopped in the car and went grocery shopping, went to the dry cleaner (as I found several of my parents clothing needed a thorough cleaning), and filled the car with gas. I got back home and put everything away and relieved the caregiver. I spent the rest of the afternoon chopping vegetables and making homemade chicken soup. 

My dad is a very finicky eater and can get turned off to food at home. But so far he ate Thanksgiving dinner, leftovers, and now homemade chicken soup. That said, there is no telling whether he will eat this soup if served to him another day! It was my mom who requested this soup today, since her stomach did not feel like eating turkey. 

If I wore a camera on my head all day, I think you would get a chuckle at how much I am running around. Literally I am constantly moving from the moment I get up until about after dinner. But its a temporary break, because I have to help my dad up the stairs and get him ready for bed. A routine my mom does daily. Which explains why she is wiped out and I am cognizant of the fact that they can live independently only because my mom is in good health. But this pace could definitely impact her health and this situation. 

While shopping today, I saw this cute pine tree. I bought it and decorated it. I find between lockdowns and the medical situation we are balancing........ lights and holiday cheer are mandatory to get through the days. 

Friday, November 27, 2020

Friday, November 27, 2020

Tonight's picture was taken the day after Thanksgiving of 2008. This was a post-Thanksgiving Day tradition Mattie and Peter had with each other. They would get out Christmas lights and decorate our commons area. Each year, Mattie got to pick out another outdoor light to add to the collection. In 2008, Mattie picked out this Scooby Doo themed light. Our light displays used to be fantastic and our neighbors always thanked us. There have been NO MORE light displays from us since 2008. Thanksgiving 2008, was VERY difficult. Mattie was home recovering from surgeries and it was at that point, I could see he had PTSD symptoms. In addition to dealing with trauma, Mattie was also very depressed. A horrible thing for any parent to witness and remember. 

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

• number of people diagnosed with the virus: 13,086,367
• number of people who died from the virus: 264,842

I literally pulled myself out of bed at 6am. I couldn't get up any earlier. I got a lot accomplished before my dad's caregiver came at 8am. After breakfast, I do daily cognitive brain games with my dad. He doesn't like doing them, but he knows I don't take no for an answer. 

Mid morning, my mom and I went for a 45 minute walk. Now that we are really locked down, these walks are crucial for our mental sanity. While walking the neighborhood, I spotted this! Quite an impressive Thanksgiving display no? If you look closely on the left (9 o'clock position) you will see a real pumpkin vine with an actual pumpkin growing on it. Mattie would have loved this. I can't wait to see what this house does for Christmas. 

While cooking today, I looked out the kitchen window and saw golfers on the course. A sighting that I have come to enjoy and appreciate. But here's the ironic analogy. When Mattie was in treatment, there was a hospital room that we often were in that faced Georgetown University's soccer field. The field was ALWAYS busy with "normal" activity. Back then, while Mattie and I were trapped inside the hospital living anything but a normal life, I would look out at the soccer field and it made me feel like I was imprisoned. That I wasn't living a life anymore that others on the OUTSIDE could understand or appreciate. Though Mattie's situation and my dad's are like night and day, aspects of feeling isolated and trapped are really quite similar. This golf course today triggered my memory of the soccer field, both evoking similar feelings.

Despite the fact that my dad dislikes leftovers, he agreed to have left over turkey today. At this point, I am sick of seeing this bird! But I put together another mini Thanksgiving dinner tonight. Unfortunately about 40 minutes into the eating process, my dad's irritable bowel syndrome kicked in. After helping him in the bathroom, eating was no longer appealing. I worry when I am not here, how my mom will balance eating at home. My dad no longer is emotionally or cognitively present with us when eating. He eats, but he is solely focused on that process and while eating he can have many requests and demands (as if he doesn't realize we are eating too), making it difficult to actually eat. I can balance this and eat faster, but my mom can't. So needless to say I am worried about both of them and their ability to eat and maintain weight. 
 

After dinner, I went into the garage and pulled out some Christmas decorations. Those of you who know me, know that I DO NOT decorate my own home for Christmas. I haven't since 2008, when Mattie was diagnosed with cancer. After Mattie died, so did Christmas. But things can be challenging and at times depressing here. So I figured seeing some lights and holiday colors may help the situation.

Though I wanted to buy a real tree, my parents are opposed to one. My dad is afraid the house will catch on fire. I gave up rationalizing on this. While I was decorating my parents were both napping. I took them to get the second dosage of their shingles vaccine and it is my hope they won't get any side effects. Getting a shingles shot should be easy, but nothing was easy about this process today, as the pharmacy seemed dysfunctional and it took them over an hour to get to my parents. NOT because of other patients, they were just scattered and bordering on unprofessional. While waiting an hour to get their shots, my dad found a box of gloves by the pharmacy. He literally couldn't help himself and one by one he started taking gloves out of the box and stuffed 18 gloves in his pocket. I literally had to intervene because there is no filter or boundaries anymore.

Thursday, November 26, 2020

Thursday, November 26, 2020

Tonight's picture was taken in November of 2008. Mattie received this cute turkey hat from his school counselor. When he placed it on his head, I naturally snapped a photo! I am so glad that I did, as this to me is the quintessential Thanksgiving photo! In all reality it was amazing that Mattie was able to smile and could take his mind off his treatments, surgeries, and the pain. I am not so sure I could have done the same if I were in his shoes. It was the beauty of Mattie, and his spirit comes shinning through his adorable face.  

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

• number of people diagnosed with the virus: 12,883,845
• number of people who died from the virus: 263,455

Today was my mom's birthday. Yes a Thanksgiving Day baby! Though we are in lock down and things are challenging with my dad, I wanted to make the day special for my mom. Which meant trying to give her time to sleep and rest. 

I woke up at 5:45am, and started my day. I asked my dad's caregiver NOT to come today. As this is just something else to balance. So I prepped for Thanksgiving Dinner, and then by 8am, I went upstairs and got my dad up, showered, and dressed. Then we went downstairs and he had breakfast and we chatted until my mom came down. 

My mom opened cards and presents and later in the day, I snapped some photos of her outside in the backyard. Their house borders on a golf course, which I happen to love. I enjoy the greenery and chatting with the golfers. It is never boring outside. In any case, my goal today was to make my mom feel special. 

Though we were going no where, I am glad my mom got dressed up. She looked beautiful and was in good spirits. 

The beauty of Thanksgiving day orange. 

We had two family friends over tonight. I have known John and Phyllis a long time. Specifically, I knew John when I was a teenager. This gives you some idea for the length of time I am talking about. John and my dad worked together and outside of work, we all had weekly dinners. So in a way, I grew up with John. Because of COVID, my parents haven't seen John since February. Today was the first time in almost ten months. So in a way it was a very celebratory occasion.

Mind you my parents moved into this house in June. So this is our first Thanksgiving or bigger meal here. I can safely say I HATE this house's oven. It is too small and its temperature is NOT accurate. Thankfully I had allotted more time than necessary to cook the turkey, otherwise, we would have had a raw bird. Despite the temperature issue, the oven is also too small and can only fit one cooking rack in it when roasting a large bird. It made it impossible to cook anything else while the turkey was in the oven. I had to put casserole dishes directly on the floor of the oven, and of course the bottom of items burnt. Needless to say it frustrated me to know end. 

The Thanksgiving/Birthday Feast. I have been slowly prepping one dish at a time this week. I have no idea how anyone can put a large dinner together in just one day. I know I can't, especially when juggling other issues. 

The birthday girl and her apple pie!

Wednesday, November 25, 2020

Wednesday, November 25, 2020

Tonight's picture was taken on November 23, 2008. We were home from the hospital for about two weeks, so Mattie could recover from his limb salvaging surgeries. We may have been at home, but Mattie still went into clinic weekly to receive his immunotherapy medication and for check ups. Nonetheless, to accommodate Mattie's recovery, our living room was transformed into a make shift hospital. We had a hospital bed delivered and a commode. As you can see Nurse Patches, our calico cat, stuck close to Mattie. 

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

• number of people diagnosed with the virus: 12,769,915
• number of people who died from the virus: 262,132

This morning while looking out the window while having breakfast, I saw this. We have a resident squirrel. He picks oranges and then sits on the wall and eats them. He is a riot to watch. His life is made with all the fruit trees around here. In any case, this was the most peaceful part of my day, and I celebrate the small things. 

Today was our LAST lunch out! We said good-bye to all the wonderful servers, the managers and the owner of Paty's Restaurant. Paty's has been in Burbank, CA for over 50 years. Like my parents there are lots of other steady customers. So much so, that  even I recognize them! As we were walking out of the restaurant a couple of diners, in their 70s, stopped us. They commiserated about the closing of restaurants and we are hold out hope that the County reconsiders, because right now outdoor dining is planned to be closed at least through January. In any case, this couple wished us a Happy Thanksgiving. I am telling you it is Burbank's equivalent to Cheers. 

This evening I baked an apple pie. The recipe I use belongs to my husband's family. To me it is the best apple pie ever. 

What do you think of my lattice?

Okay here is the trick! The pie is baked at 450 degrees in a stapled paper bag. Why? Well first it traps all juices so they don't go all over the oven, but it also locks the juices in! To me the bag is the secret ingredient. 

The final product! Recently I learned the benefits of using an egg wash on top of a pie. It helps it cook more evenly and gives it an even brown color on top!

Meanwhile, check this out! Sunny has taken over the couch and enjoys a cat nap with Peter's mom. 

Tuesday, November 24, 2020

Tuesday, November 24, 2020 -- Mattie died 582 weeks ago today. 

Tonight's picture was taken on November 21, 2008. Mattie was playing on my computer with his left leg! Why? Because all his other limbs were operated on and wrapped up! Nonetheless, "Curious George," the name we gave Mattie's left leg, became quite skilled. Mattie's foot and toes were as good as a hand and fingers!

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

• number of people diagnosed with the virus: 12,589,221
• number of people who died from the virus: 259,874

Sharing some photos from Boston. Peter sent me several today, as Sunny is having a wonderful adventure. He loves his outdoor time and daily walks in the woods. You can see how alert Sunny is with his ears perked up and his tail raised high. 

Look who took over the couch! Sunny is an emotional beast and he knows how to ingratiate himself with his hosts. 

Even Indie is getting in the act. Typically she is a very shy and anxious cat when we aren't at home. But since she has visited Peter's parents a couple of times, she is now exploring the house. 

My mom's birthday is on Thanksgiving. Today we surprised her with flowers for our Thanksgiving table. 

Because I am balancing a lot here on any given day, I have decided to prep a Thanksgiving dish on Monday, Tuesday, and Wednesday. Hopefully making Thursday more manageable. Yesterday I prepped stuffing.

Tonight I prepped a sweet potato soufflé. 

It was a typical busy day in paradise! The new wound care specialist visited this morning. She was a night and day difference from the previous horror show. Today's specialist was knowledgeable, open to questions and felt that a less aggressive treatment approach could be taken given my dad's progress. The last specialist debrided my dad's pressure sores twice a week. It involved thoroughly cleaning the wound and removing all thickened skin, infected, and dead tissue, foreign debris, and residual material from dressings. That may not sound bad, but it involved invasive scraping and causing my dad's back to bleed. 

The other nightmare was a laundry room flood. Try over two inches high of water. I literally thought I was going to lose it! Mind you I have had a plumber come to fix the washing machine five times. Just when we think the problem is solved it gets worse. There is absolutely NO peace here. 

Meanwhile, tomorrow will be the LAST day we can go out for lunch. All outdoor dining will be closed in LA County starting at 10pm on Wednesday. My parents go daily to the same restaurant about five minutes from their home. Given that they are frequent flyers there, everyone in the restaurant knows them. It is like going to Cheers. Which is great stimulation for my dad, not to mention it is the reason he has gained weight and his health is improving. Today we spoke to the owner of this neighborhood restaurant. He is devastated by LA County's mandate for restaurants to close in-person dining. He told us he employees 16 people and many of his servers were in tears today as they do not know how they will be able to support their families. I honestly do not know how LA will be able to make it with this continued level of lockdowns. 

This neighborhood restaurant was packed today. Every allowed outdoor table was filled, and as diners left, new ones came. It was like people know change was coming and they were spending every possible moment out and about. What a horrific commentary. Yet all the servers and the restaurant owner were working very hard today, trying to make their diners feel special, cared for, and appreciated. Which to me was noteworthy, given the pending lockdown and impact on their livelihood. This restaurant is important to me because the staff really do look after my parents when I am not here. They meet their every dining need and they also make sure my parents get a table as quickly as possible. These folks will be missed and my concerns now begin as I worry...... will my dad eat at home now that we return to lockdowns?

Monday, November 23, 2020

Monday, November 23, 2020

Tonight's picture was taken on November 21, 2008. It was around 8 days after Mattie's second limb salvaging surgery. Based on the activity in this photo, I know it had to be a Friday! On Friday, the University's chemistry club came to the pediatric units to do fun experiments with the kids. This was something Mattie LOVED. So much so, that if Mattie couldn't go to the playroom, the club came to Mattie! 

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

• number of people diagnosed with the virus: 12,395,660
• number of people who died from the virus: 257,549

Just when you think it will be a more manageable day! Forget it. I can't quite explain why each day is filled with stress and chaos, but it is. As usual, I was up at 5:30am. I need to get up this early in order to get showered, dressed, and start breakfast and chores before my dad's caregiver arrives at 8am. At 7am, I was in my parent's garage looking for a leaf for their dining room table. Who knew a table leaf could weigh a ton. 

Overall, it was like a three ring circus in their house today. From 8am to 1pm, I managed the caregiver, the manicurist who cares for my parents nails, the plumber fixing a leak, phone calls with doctor offices (GI, cardiology, dentist), followed by a dialogue with the wound care company. On Thursday of last week I fired my dad's wound care specialist, as he was very unprofessional and I think also incompetent. They have now assigned a new specialist to care for my dad starting tomorrow. Given the last specialist, I gave it to this company, as I think there is a real lack of training and oversight and I told them I wanted the A team now. In addition, I said this company is getting one more chance, and then I am moving onto another wound care company if tomorrow's specialist is equally awful. It speaks volumes to me that they hire such questionable professionals. 

After that I dealt with paperwork, orders my mom wanted to complete, a stolen credit card, and took my parent's to lunch. At lunch my dad had to go to the bathroom, so I accompanied him and went right inside the bathroom with him as he truly needs a lot of assistance. Are you getting the picture for my day?! I am worn out and I am much younger than my mom. It is very understandable why she is burning out. 

Also my parent's garbage container is broken and I have been trying to get through LA County Department of Water and Power! Good luck. The most user unfriendly phone number and forget the website. I created a login and password and then couldn't get into the system with these credentials. I just want a NEW bin, and I am expending a great deal of energy with this request. If this was the only thing I was balancing, it wouldn't be so bad. But my patience is dwindling. 

Then LA County announced that it is CLOSING outdoor dining starting 10pm on Wednesday. That may not sound bad, but for my dad this is like a life sentence. In fact, I blame lockdowns for my dad's significant decline in physical and cognitive health. Things are hard enough, but now I have to worry about the break in ROUTINE and my dad potentially refusing food at home. I have reached the end of my rope with the virus and how our officials are managing it. Of course their mandates apply to us but NOT to them. I am fed up and frankly if Los Angeles keeps it up, the crisis will be much more significant than the virus itself. 

Sunday, November 22, 2020

Sunday, November 22, 2020

Tonight's picture was taken on November 19, 2008. It was six days after Mattie's major limb salvaging surgery. By that point, respiratory therapists were on the scene and worried that fluid would start collecting in Mattie's lungs. Mainly because he was unable to move and work the fluid out naturally. So at that point, we tried fun activities, like using crazy straws to get Mattie sucking in and blowing out! However, Mattie approached requests cautiously! Which was why I always did them first. You can see that Mattie was watching me as I was wearing this crazy straw that wrapped around my head and formed green straw glasses on my face. 

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

• number of people diagnosed with the virus: 12,224,322
• number of people who died from the virus: 256,741

Do you find this photo as funny as I do? Peter sent me this photo of Sunny tonight eating of all things...... asparagus. A first. Sunny is usually a protein dog! I frankly don't know what is funnier, the fact that he is eating a vegetable or his adorable eyes checking out the asparagus. Sunny is close to 70 pounds, but he is a gentle giant. For a larger size dog, I am always amazed with how gingerly he takes food from a human's hands! 

Since I have gotten to Los Angeles, I have been getting up each morning at 5:30am. That may not sound like a big deal, unless you know me. I am NOT a morning person. The first day or so that I was here, I figured I was getting up so early because of the time difference. After all, 5:30am LA time is 8:30am East coast time. 

Now I realize my issue isn't time zone related. I think it is simply stress. I am afraid that my alarm will go off in the morning and wake up my mom who is in the guest room, right next to my room. So subconsciously, I am waking up periodically during the night to check the time (like 2am, 4am, and then 5am), and I have managed each morning to wake up before my alarm goes off. 

During the summer (June and August) when I came to Los Angeles, my focus was helping my dad. Now I am trying to help both my dad and my mom. Specifically trying to give my mom time to sleep longer in the morning, in order to regain her strength. My dad was hospitalized both in May and June. Between these hospitalizations and COVID lockdowns, his dementia went from the early to late stages of the disease. It has truly been unsettling to think that cognitive decline can happen overnight. I must admit that I held out hopes that my dad would bounce back to how he was functioning in May with time, better nutrition, family support and care. Unfortunately this hasn't happened and the reality has hit all of us. The mentally active and engaging person we once knew is no longer. Certainly he has moments or snippets of time during the day where he is more engaged and intact, but it doesn't last long. 

I have a long fuse and a great deal of patience, however, the latest battle is the cell phone. My dad has a phone, yet keeping track of his phone is a nightmare. He typically keeps the phone in his pants pocket, but at times he does set it down and then panics..... where is the phone? In fact, he is in such a panic about the phone that you can visually see him searching his pockets and surroundings for his phone every five minutes. Literally today he asked me 20 times about where his phone was? I answered it calmly 20 times, but by the 21st time, I was on the edge. Mainly because he asked me less than five minutes before the exact same question. 

There are things that have stabilized such as his eating and his irritable bowl syndrome. I celebrate all wins, and am happy that he appears to have a good appetite and isn't having stomach pains, that lead to explosive bouts of diarrhea. Which truly gave my dad and my MOM no quality of life. However, my days are VERY full here, as I move from one chore to the next and at times I feel like a 911 operator, dealing with one crisis after the other.