Saturday, January 9, 2021

Saturday, January 9, 2021

Tonight's picture was taken in December of 2007. Mattie was five years old and was at the US Botanical Gardens. A family tradition around the holidays. While walking around the warm and humid Gardens, which was wonderful in the cold days of winter, we came across this LONG plant. Mattie stood underneath it and we laughed because it looked like he had a big head of green hair. 

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

• Number of people diagnosed with the virus: 22,129,231
• Number of people who died from the virus: 372,384

It was another long day in "paradise." Frankly practically everything has happened to me here. So why not add an intruder and calling the police to the mix!

This afternoon, after I cleaned up linner and my dad was relaxing in his chair, my mom and I went out for a walk. We find this is the best way to manage the daily chaos and stress we are coping with. 

While walking up the driveway, I heard a noise coming from the side of the house. At first I thought it was our resident raccoon. But as I got closer, something did not seem right. 

So I had my mom get in the house and I went through the house to the backyard. Mind you it was around 5:45pm, so by this point it is dark out. I included this photo that I took two weeks ago. On one side of this wooden door is our driveway and the other side is land that runs along the LA River. The LA River is completely fenced off from the public. So to walk on this land by the River, one would have to scale and climb tall fences. 

In any case, the noise I was hearing was coming from behind the wall/gate. I was able to determine that what I was hearing was a person walking on very dry leaves. So there was a lot of crunching of leaves. So I shouted out...... is there someone there? WHO'S THERE?!! I CAN HEAR YOU. At which point, a male responded that he was there and was trying to climb through! I told him if he comes over our wall, he will be on private property and he has to leave NOW. He asked me how to do that! I told him to retrace his steps IMMEDIATELY and leave. 

I couldn't see this man, as it was dark and I had no way to climb up the wall where he was located (as he wasn't near this gate, which I could have easily climbed). I ran into the garage to grab a ladder but by the time I got back he was gone. I could hear him crunching on the leaves and walking away from our home. I did call the police and filed a report, but the police wouldn't come over because I never saw the person in question. 

I contacted the owner of the house and also contacted the neighbor who shares a driveway with us. She is getting a lock for her gate (surprisingly enough she doesn't have one now), as she has the same issue as we do....... with her driveway running along the area near the LA River. Once the owner of my parent's house got here, we walked the land by the LA River and saw no one there now. But we will be going to walk this area by the daylight so that I have a better understanding for how people maybe able to get to this enclosed area. 

Needless to say, I was shaken up and given how stressful days are here, this is the last thing I needed this evening. I am not sure what would have happened if  hadn't heard that noise tonight or if I hadn't gone out to investigate? My guess is he would have jumped into our backyard. 

Friday, January 8, 2021

Friday, January 8, 2021

Tonight's picture was taken in December of 2007. Mattie was five years old and that day we took him to the US Botanical Gardens. It was a family tradition, because the Gardens would decorate for the holidays and have multiple toy train displays which Mattie loved. In addition, it was usually cold and depressing outside, and yet walking into the Gardens was like visiting the tropics. It was warm and humid inside! As you can see, Mattie posed in front of the US Capitol model. All the Gardens' models were made out of plant material, like pinecones for example!

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

• Number of people diagnosed with the virus: 21,846,815
• Number of people who died from the virus: 368,367

I think the amount of intense work I am doing here in Los Angeles, has caused my right hand to develop both carpal tunnel syndrome and a trigger finger. My first experience with carpal tunnel was right after pregnancy. I was 50 pounds heavier from my pregnancy and the swelling in my wrist was causing pressure on a nerve. I literally would have a numb arm and hand which was a major problem as a new mom who had to use her hands to help her baby! If I overuse my right arm and hand, I do get flare ups of carpal tunnel. Which is what I am experiencing now. However, whenever this happens, it takes me right back to 2002. It is one of my physical reminders that YES I once had a child and was a mom. 

Carpal tunnel isn't a new problem for me, but a trigger finger is. I assume this is the issue. My middle finger aches and it is hard to bend and when I do bend it, it snaps back out. When I return home later next week, I will have to address this problem because I do not want it to get worse. 

Here is the highlight of my day! After I served and cleaned up "linner," my mom and I went for a walk. We try to do this daily. Along my journey, I came across this cute orange kitty. He came right over to greet me and was a very loving fellow. 

Thursday, January 7, 2021

Thursday, January 7, 2021

Tonight's picture was taken in December of 2008. That evening, Mattie joined his cousins and some preschool friends for Zoolights at the National Zoo. It was our first and last experience walking through the zoo at night. I am so glad we took Mattie and that we tried to make the most out of every day of his life. 

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

• Number of people diagnosed with the virus: 21,543,310
• Number of people who died from the virus: 364,735

Today was quite the day. Besides my typical day of getting up at 6am and dealing with cleaning, cooking, caregiving, brain exercises, and my dad's physical therapy routine, I also landed up sweeping my parent's entire street. You read this correctly! Why was I doing this? Not because I had nothing better to do, but because there was broken glass up and down the street! It was a total mess. Not only could this impact car tires and pets, but I was worried about my dad who takes his walker up and down the street for his twenty minute daily walk. So we must have looked like a show today. My dad with his caregiver and walker, my mom following with my dad's wheelchair, and me with a garbage bag, broom, and dust pan. I honestly don't understand why our neighbors did not sweep the glass in front of their own houses! Why did I have to do it? Naturally I know the answer.... its the free rider problem. Someone else will take care it!!! I was that someone.

While in my parents garage a week and a half ago, I was working in the garage closet and noticed rat droppings. Being a city dweller, I know RATS! So I called my parent's exterminator. Thankfully the problem in no where inside the house, but I want to get on top of this so the problem isn't outside either. So I met with the exterminator today and he is addressing the problem. But that led to a clean out of the garage and I removed all of the rat debris. Honestly just when I think it can't get any better, it does!

Things come in threes! While going out to get the mail tonight, what did I see?! Two eyes staring at me.... a big raccoon. He wasn't moving and neither was I. It was a meeting of the minds. I told him to move along, and thankfully he complied. 

Wednesday, January 6, 2021

Wednesday, January 6, 2021

Tonight's picture was taken in January of 2008. Next to Mattie is Charlotte. Mattie considered Charlotte his "girlfriend." These two met each other on the first day of kindergarten and bonded immediately. Charlotte always said that she and Mattie were going to be roommates in college, and Mattie even gave Charlotte a plastic ring, because he said he was going to marry her. Mattie was invited to Charlotte's birthday party and sat right next to the birthday girl. Charlotte was only 6 years old when Mattie was diagnosed with cancer. Yet her friendship never waved, she visited Mattie in the hospital throughout his treatment and her devotion to her friend continues even today, as Charlotte helps Mattie Miracle raise money!

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

• Number of people diagnosed with the virus: 21,279,163
• Number of people who died from the virus: 360,741

I think there is something to be said for chaos on both the micro and macro level. That is how I am feeling. My micro concerns are traveling every other month to Los Angeles, to help manage my dad's care and support my mom. That alone is a lot to cope with, but then we also have national chaos going on all around us. Not only COVID and lockdowns, but civil unrest in my home town of Washington, DC. I find all of this is wearing and makes me feel overwhelmed, at times helpless, and depressed. 

It was another full day here as always and besides the physical toll of providing non-stop caregiving, there is an emotional impact. It is very hard to see my dad transformed by dementia. He was once a man eager to take on challenges, thrived on doing new things and encouraged the rest of us to get on board. He is the complete opposite now. At times you look at him, especially while he is eating, and he looks FAR AWAY! Absolutely zoned out and focused on eating, however, he did admit to me that he can't remember whether he ate or not, and therefore can't determine or feel when he is hungry or full. In so many ways, I feel like I am running an assisted living facility and when I have a moment of time (which is rare), I reflect and I think to myself what a waste of time. All these years, I have lived on one coast and my parents on the other. This was the time when we should have lived closer to each other, and have grown together. So this leaves me balancing anger and disappointment for my parents decision to move back to California in 2005 (after they sold their house in California, they moved to Washington, DC to be closer to us and Mattie, but after three months of our weather, they returned to LA). 

Seeing all that I am doing for my parents makes me worry about Peter and me. Who will be doing caregiving for us as we age? The answer is no one. We will have to be self sufficient and plan for our own aging, which is scary, because I know first hand how vital it is to have an advocate who is able bodied and mind. Perhaps I am just tired, but all of this is bringing me down and making me feel like I don't have a future. Life hasn't gone at all like I would have hoped or wished. 

Tuesday, January 5, 2021

Tuesday, January 5, 2021 -- Mattie died 588 weeks ago today. 

Tonight's picture was taken in December of 2008. If you look closely, Mattie was in the center of his school's football team photo. We received this as a gift from the two head coaches of the team. They came over and hand delivered this framed photo it to Mattie. Mattie had the opportunity to meet the team several times and though these players were much older than Mattie, they were very kind and gentle with him. 

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

• Number of people diagnosed with the virus: 21,042,929
• Number of people who died from the virus: 357,132

This morning I received a text message from a friend of ours. We met Kristen, a pediatric social worker, when Peter and I served on a bereavement panel at a local conference in Washington, DC. Kristen was one of the panel's moderators. This panel took place shortly after Mattie died. So needless to say, our grief was raw and very transparent. Nonetheless, Kristen made an impression on me, because of her demeanor, insights, sensitivity, competence and compassion. Since that panel presentation, we have remained connected!

Today Kristen wrote to me because it came to her attention that her county's school board was creating an annual memorial day within the school system in order to remember and honor the life of a child who died. Given Kristen's experience as a social worker and working with many parents whose children have died, she is very in tune and sensitive to the life long grief child loss can produce. In other words, if a school system decided to acknowledge and celebrate let's say "Mattie Brown day," how would other bereaved parents within the school system feel about this? Was their child's life not worth celebrating, remembering, and basically not as important as "Mattie Brown?"

The loss of a child is very difficult and no two parents may feel the same way about the manner in which their child is memorialized. The manner may differ but what seems to be a given is that bereaved parents observe, listen, and absorb how our society reflects on the loss of their child. Unfortunately the lives of all children who have died do NOT receive the same attention, which can be very painful for those who remain behind. Which is exactly what Kristen is tuned into and is concerned about the reaction that bereaved parents within this school system will have to a special memorial day named after ONE child. What Kristen is expressing seems like a no brainer to me, yet she is getting push back from the school system. Honestly I have NO words, other than, the decision makers truly do not appreciate child loss and the impact of this devastation on family members. All I know is I would be deeply hurt for example if I heard that Mattie's school decided to create an annual memorial day for another student and yet NOT consider Mattie. 

Meanwhile it was another full day in "paradise." I am worn out and as Scarlet O'Hara used to say, "after all tomorrow is another day."

Monday, January 4, 2021

Monday, January 4, 2021

Tonight's picture was taken in December of 2008. I remember this day very well. It was a challenging one emotionally. Mattie was in pain, and dealing with great sadness and depression. Not to mention anxiety. Friends dropped off these cute hats and light up noses! Peter jumped on in as Santa and Mattie as Rudolph. It was a moment of fun that cut through a sea of darkness. 

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

• Number of people diagnosed with the virus: 20,807,818
• Number of people who died from the virus: 353,371

Another day in "paradise." I am NO longer under any delusion that tomorrow will be a calmer day! Forget it, it never happens. My day involved the usual routine that I mentioned yesterday, but on top of my usual tasks, I had to run back to the notary today to get documents processed and then mailed. Of course whatever I mail, I have to scan and print out so my mom has them in her files. Adding paperwork to an already complicated day is a pip. 

Last week, I bought my dad a reading comprehension workbook at the 8th grade level. My dad used to love to read and process information. Unfortunately not anymore. He gets frustrated, angry, and belligerent if you ask him to push himself out of his comfort zone (which is very small). I tried to impress on my dad today that one needs to exercise not only the body but also the brain daily. For the past two days, I sat by my dad's side reading through the reading comprehension passages and then I coached him as he answered the questions that pertained to each passage. Today, I was working on filing out paperwork and scanning documents. So I left his side for thirty minutes in the hope that his caregiver would coach him. Forget it, she didn't and when I walked back in the room, my dad was stymied and puzzled. When I offered to work with him, he snapped at me, saying he had to do it by himself. Then after which he proceeded to say he hated these exercises and did not want to do them. This usually then leads to him saying that my mom and I are constantly beating him up. Which drives me batty, because people who may not know us, will think we are literally abusing him! 

On top of managing my dad's needs, his caregiver, running chores, cooking dinner, and constant cleaning, let's add picking up a rug at the front of the house (which is 500 feet away from the front door) to today's list. My parent's had a beautiful rug in their living room, but last week I had it removed to be cleaning and wrapped for storage. My dad was either tripping on it or carting dirt all over it from the patio. 

It is hard to pick a rug on line. There are some things I prefer to shop in person for, but in COVID times, one has to improvise. I spent days tracking down a rug that matched my mom's style! Now it is on the floor and I have soda boxes on top of the rug's corners to straighten it out. 

My last kitchen activity for the day was baking from scratch a three layer lemon cake with lemon buttercream frosting. Ironically I don't like baking. But since I have been here, I have baked a coconut layer cake, a layered carrot cake, and now a lemon cake. My parent's love a little dessert after dinner, and given the lockdown, a little sugar brightens all of our days!

Sunday, January 3, 2021

Sunday, January 3, 2021

Tonight's picture was taken in December of 2008. The hospital discharged Mattie for Christmas. I know the thinking was that kids and families wanted to be home for the holidays. True in theory, but sending us home managing both physical and psychological issues was truly over the top. It was a very difficult last Christmas with Mattie. We tried to make Christmas special and as you can see Peter was helping Mattie open up Christmas gifts. Mattie was intrigued and his curiosity got the best of him as he joined in with the fun. 

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

• Number of people diagnosed with the virus: 20,623,578
• Number of people who died from the virus: 351,450

When I tell you I never stop moving all day long, I am not kidding. I honestly do not know why life here is so chaotic, but it is! There isn't a minute's peace here in "paradise." I get up each morning at 6am. I make the bed, shower, and get dressed. If I don't get dressed as soon as I get up, I won't have the time the rest of the day. At 7am, I start chores like unloading the dishwasher, throwing out garbage, and making breakfast for everyone. At 7:30am to 8am, I start chopping or cooking things for dinner. I know you must be saying..... she's cooking dinner at 7:30am? I have to do this for several reasons. When my dad's caregiver arrives at 8am, it is then hard to focus on things in the kitchen until she leaves at noon. My dad likes eating by 1:30 or 2pm. Yes dinner is at that hour! So if I don't start cooking early in the morning, there is no way I can put a big meal together by 2pm. For the past two weeks, I have cooked daily. Given that my dad is VERY finicky about food, I feel as if I am cooking a 'Sunday Dinner' every day of the week. It is labor intensive on top of everything else I am balancing. 

By 8am, the caregiver arrived and at that point, my mom came downstairs and we had breakfast together. My dad got downstairs around 8:30am, and once he is downstairs the activities begin. Once he finished eating breakfast, next is cognitive brain exercises. Each day he does a numbricks puzzle, a reading comprehension exercise, and a series of word scrambles (all activities I have added to his day!). My dad dislikes these activities, but I tell him they are crucial, and I don't just hand him exercises to do, I sit by his side coaching him. After brain games, we then went on a twenty minute walk in the neighborhood. It is sad to me, because when he walks his head is frozen looking down. He doesn't look around, he isn't interested in looking at the trees, flowers, or houses around us. All he wants to do is walk the 20 minutes and get it over with. 

Once the walk was done, my dad sat on the patio and did another 15 minutes of PT and OT exercises. While he did these exercises with his caregiver, I ran to the grocery store to get food and supplies. I literally had 45 minutes to get this done before the caregiver left today. It is like running on a treadmill all day. Got home from grocery store and put everything away. Then continued cooking dinner and served it around 2pm. 

I made barbequed pork ribs today. Something my dad used to love. Turns out he NO LONGER likes them. Given I never know what I am going to get with him, I have to make sure I cook multiple side dishes in the hopes that he will eat them! It is exhausting. Here's the new thing he has going on! He needs to eat with a garbage pail next to him. My mom adopted this strategy because if not, my dad starts piling up trash all around him on the table. At first I did not believe her, but I had to only experience one meal with him to see that the pail is vital. He goes through 30-40 napkins in one meal and also starts pulling away pieces of his food. Like he is dissecting the food. Some of it he will eat and other parts he would pile up on the table if there wasn't a pail. So when I tell you that clean up after dinner is a chore, I am not kidding. 

After cleaning up, I started putting away Christmas decorations that I set up  during my last trip here in November. Hopefully I can get this done in the next day or so. At around 3 or 4pm, my dad becomes totally exhausted. So I typically help him to his motorized reclining chair to rest, while my mom and I go out for a walk in the neighborhood. If we don't use his rest time wisely, we won't have a minute to ourselves. 

It is really at 6:30pm when I get a break. During the break I write the blog and then watch TV with my parents. By 9:45 or 10pm, I am helping my dad upstairs for bed. He can't take his own clothes off, so he needs help with this as well as getting situated in bed. This is my daily routine when I am here, so when I get into bed at night, I literally pass out from exhaustion.