Saturday, February 25, 2023

Saturday, February 25, 2023

Tonight's picture was taken in February of 2009. Mattie was isolated to his room because of a potential contagious virus. While we were awaiting his test results, he wasn't allowed out of the room. I can't tell you what a torture that was, to be locked into a two by four of a room. To help break up the isolation, Linda (Mattie's child life specialist) and Anna (Mattie's physical therapist) came into the room to get Mattie moving. As you can see they were working on stomping on a pedal which sent off a toy rocket into the air. Notice that Brandon, Mattie's cancer buddy, was standing in the doorway. He wasn't allowed into the room, but he was there for moral support and cheering! 

Quote of the day: The purpose of life is not to win. The purpose of life is to grow and to share. When you come to look back on all that you have done in life, you will get more satisfaction from the pleasure you brought to other people’s lives than you will from the times that you outdid and defeated them. ~ Harold Kushner

This is an Andromeda plant. It is already blooming in our garden! Rather funny, since we had snow showers today!

After I got myself downstairs this morning to make breakfast, my mom was screaming for me from upstairs. I had to stop what I was doing to find out what was going on! When I got upstairs, she was frantic. I asked her what was going on and she couldn't even put it into words. I then noticed that her phone was one and it looked like she had made a call and someone was on the other line. I asked her who she was talking to, and she couldn't respond. So we hung up on that call. She got herself worked up about the fact that she thought she owed money to a credit card company. It turns out she continues to overpay bills and therefore they owe her money. 

I have tried to offer to take over all my parent's bills and financial things, but my mom won't have it. So instead, I have to actively monitor and oversee everything that she does. Of course after my typical morning routine with my parents, I then proceed to do Foundation work. While I am working (which never lasts for long), this photo shows a typical occurrence. I find that 45 minutes of physical therapy on Fridays wears my mom out completely. She is exhausted for many days later, and of course if you ask her, she has no insight into the fact that she sleeps days away. 

Meanwhile, I washed my parents electric blanket that is on their bed. As soon as I put the fresh blanket back on the bed, Indie hopped up and made herself comfortable. 

Sunny got groomed today! It isn't one of his favorite activities, but it is very necessary. Especially being on daily chemo. 

Today one of my friends had to put her dog, Max, to sleep. Tina had Max since he was a puppy. They grew up together and he was an integral member of her household. As a fellow dog owner and someone who knew Max quite well, I am deeply saddened by this loss. 

I can't imagine life without Sunny and it saddens me that Tina is now faced with this heartbreaking loss. In fact, I bet anyone reading this is a dog owner, understands what Tina is facing today, and the next day, and the next day after that. Dogs leave an indelible mark in our hearts. They are so intuitive. They know what is missing in our lives and they cleverly find a way to provide exactly what we need. 

Friday, February 24, 2023

Friday, February 24, 2023

Tonight's picture was taken in February of 2009. Mattie was pictured with Sally, the story book lady. Sally is an artist who donates her time to visit the pediatric units and educate/entertain the children. Sally is gifted and though Mattie usually refused to work with volunteers, he approved of Sally. No matter how badly the day was going, Mattie always wanted to see Sally. Even if he couldn't leave his room, Sally was invited in! That may not seem like a big deal, but given our circumstances this said volumes. This photo was taken in the child life playroom. Sally was celebrating African American History month. Sally read stories and together she and Mattie played music together. It was a beautifully memorable moment. 

Quote of the day: When you have once seen the glow of happiness on the face of a beloved person, you know that a man can have no vocation but to awaken that light on the faces surrounding him. In the depth of winter, I finally learned that within me there lay an invincible summer. ~ Albert Camus

It is 7:30pm and I have had a full day of appointments, driving around, bathroom runs, and so forth. Therefore, I am signing off for today, in hopes that tomorrow will be better. A big thanks to all our loyal readers, who continue to read my words, and choose to remain with me on my life's journey. I can't tell you how much that means to me.  

Thursday, February 23, 2023

Thursday, February 23, 2023

Tonight's picture was taken in February of 2009. Mattie was home between treatments and as you can see our living room was packed to the gills. The floor had Mattie's Christmas tree set up. Mattie received this tree as a gift from the hospital. Around the tree were train tracks and a Lego village. Then all of Mattie's Valentine's day cards, that he received from classmates, were in Ziplocs and shoe boxes. Of course around the perimeter of every room in our home were items gifted to Mattie from friends and the hospital. We literally looked like a warehouse not a home. I remember those days so well and after Mattie died, I literally left everything like it was for years. I just had no energy to address any of the piles and chaos. 

Quote of the day: Everything you do has an impact. Who you are – that you are – actually matters. In an interconnected world (the only kind we have), our actions and the actions of others are inextricably linked- we are always and forever in a dance of mutual influence with those with whom we directly and indirectly participate.  It is the unavoidable reality of being social creatures, only magnified by an ever-increasingly complex and interwoven societal structure.  We matter to each other. ~ Paul Greiner

My dad started with another round of pooping in the shower this morning. This is becoming a more regular occurrence rather than a rare occurrence with my dad. Ironically before I take him into the shower each morning, I have him go to the bathroom. He literally had a bowel movement before putting him in the shower. But that did not matter. My dad's memory span is about 30 seconds. After which, the slate is wiped clean. In fact if we ask him today about pooping in the shower, he has NO IDEA what we are talking about. In his perspective, he never poops in the shower. 

I can see why caregivers of people with dementia could potentially land up yelling at them. One could become easily overwhelmed by the behaviors and the non-stop asking of the same question over and over. I am smart enough to know that my dad has no control of his bowel movements, but that doesn't mean I enjoy the process or the clean up. In fact it is sickening. 

After this morning's ordeal and the usual routine, I got my dad in his reclining chair and I hopped on a thirty minute conference call with a potential corporate sponsor for the Foundation. How I go from cleaning the shower and doing caregiver tasks, to sounding somewhat normal is beyond me. It is a feat of great proportion. 

Meanwhile, Peter has been working on spreading mulch around our front and backyards! It is a big undertaking, but since today was close to 80 degrees, it was the perfect day to be outside. 

Peter's side kick! Notice that Sunny has a bandage on his front right leg! He went to the oncology center today for a check up. They did a blood draw and collected a urine sample. I am hoping that Sunny's UTI cleared up because I hate when he is on antibiotics. The combination of that with chemo impacts his stomach terribly. 

My boy! Life with Sunny is always better. I just love his face, his disposition, and his love and loyalty!

Wednesday, February 22, 2023

Wednesday, February 22, 2023

Tonight's picture was taken in February of 2009. Mattie was in the child life playroom and in front of him was a volcano kit he put together. Mattie was anxiously awaiting the explosion of fake lava to erupt. You will notice a cup with a straw next to Mattie. I know exactly what was in that cup! It was Mattie's vanilla shake faze. With chemo came different food or drink cravings. Given that Mattie had no appetite, whatever he wanted to eat or drink, we gave it to him. Of course none of that would have been possible without an amazing support network who visited daily and brought all sorts of treats for Mattie and us. 

Quote of the day: There is only one timeline. There is only one you. ~ Dave Crenshaw

This morning, after getting my dad ready and out the door, I then got my mom into the car and took her to her physical therapy session. On the way to the hospital for her appointment, my mom made a phone call. She was calling the bank to cancel a joint account we set up. I was very perplexed by this decision given that we worked hard to create this account. 

Literally while she was talking to this person, I was telling her the nature of the account and why it was created in the background. My mom told the person she would call her back, because my mom realized she had to hear what I was saying. Once off the phone call, I explained to my mom why we created this account in 2021. To make a long story short, my mom had no memory of this account, why it was set up, and the great lengths we went to in order to set it up almost two years ago. It is incidents like these that I try to use as teachable moments for my mom. My mom is adamant that she doesn't have a memory problem. I don't wish to be mean or confrontational, but I feel it is important that she have some insight. Without such insight, it is easy to walk into all sorts of financial schemes and problems. 

I am practically with my parents 24/7, but I can't always listen to every conversation they have. I try, and I am mostly successful. But to me it is important that my mom learns to work with me and to understand that I am on her side. Since my parents moved in, we have had our share of arguments about my mom's paranoia. Slowly I am adjusting my style and ways of interacting with my mom, and for the most part when I remain calm and supportive, things go better. But again, I am human and it is very hard to always be so patient, especially when I am so tired. 

Tomorrow morning, Sunny goes in to see the oncologist. I wanted to be a part of this check up, but instead Peter and I are dividing and conquering. As I have a conference call with a potential Foundation sponsor at the same time, and there is no way I am rescheduling this important video call. All I know is multi-tasking is very overrated and as tonight's quote points out.... there is only one of me!

Tuesday, February 21, 2023

Tuesday, February 21, 2023 -- Mattie died 699 weeks ago today. 

Tonight's picture was taken in February of 2009. This maybe one of my favorite physical therapy photos! It captured the antics, energy, and community we created at the hospital. The goal was to get Mattie to walk and use his legs. It was a true challenge since he had prosthetic bones in both arms and in his right leg. Typically when you are relearning to walk, you can rely on your arms. This wasn't the case for Mattie. In fact Mattie was hesitant to use a forward facing walker, which was why Anna found this pediatric reverse walker which Mattie preferred. Yet to get Mattie to walk required our whole community to participate for support. In the conga line with Mattie was Jessie (his art therapist), Linda (his child life specialist), and Anna (his physical therapist) leading the charge. 

Quote of the day: Patience is the calm acceptance that things can happen in a different order than the one you have in your mind. ~ David G. Allen

This morning I had to take my dad to his podiatry appointment. I take him every three months. The doctor's office is literally ten minutes from our house. One perk! But the building the office is in is a nightmare. The complex is working on their parking garages. So literally you can't park, and have to use their valet service. Today's surprise was the elevator was out of service. The podiatrist is located on the third floor. We were given the option of working with the doctor in a different office on the ground level or get this..... have someone put my dad in a chair and two people would carry him up three flights of stairs! Insane no? I just don't get the management of that building. The second option sounds like a law suit waiting to happen.  

Naturally we met with the doctor on the ground floor. When escorted into the ground floor office, we were accosted by a terrible smell. It smelled like a thousand pounds of raw garlic in the office. The smell was so terrible that I had my mom stay outside in the lobby. My mom has a lung condition and I was sure this smell would set her off. I then asked the doctor's assistant what was with that smell. She told me that the former occupant of the office moved out and since then they have been using every type of spray to deodorize the office. I told her the sprays weren't working. 

I then asked her if the former occupant was a urology practice? So she looked it up in the directory. It was not, but the adjacent office is indeed a urology practice. I told her that I knew what smell was from first hand experience. If you have a bladder condition like me, you may be familiar with DMSO treatment. DMSO (dimethyl sulfoxide) is a liquid solution that treats pain and discomfort in your bladder caused by interstitial cystitis, also known as bladder pain syndrome. A doctor will give you this solution as an injection into your bladder in a hospital or clinic setting. 

Years ago after Mattie was born, I developed cystitis. I am not sure what was worse, the pain from cystitis or this treatment. The treatment was torturous and it felt like I was holding acid within my body for 20 minutes! I think I underwent this procedure three times and after that, I dismissed myself from that doctor's torture and practice. On an aside not only did DMSO not work, it made me incontinent for about 6 months. Keep in mind that I was in my early thirties then and a new mom.  

But back to my point, DMSO smells like garlic. Also after a DMSO infusion you smell like garlic and your mouth tastes like garlic for days! I remember going for these torturous treatments and feeling sick to my stomach from the smell. It is a time in my life I will never forget, and walking into this podiatry office today, brought up memories I had really wanted to forget. 

The podiatrist has gotten to know me by now. After the exam, I helped put my dad's compression socks back on his feet and his shoes on. The doctor was so impressed with my ability to work with my dad that he gave me a fist pump! 

After surviving the podiatrist visit, my mom insisted on going to the bank. With my mom I have to pick my battles. If I don't, we would be fighting daily. Maybe hourly. My mom is no longer rational at times and has no insight into her cognitive abilities. Today's issue was she said that I was not on her bank account. She insisted she had to go to the bank to add me to her account. I told her we addressed this problem right before they moved from Los Angeles. I remember the nightmare of paperwork and visiting each of their banks. The point is she didn't (and this happened in December of 2021)! Instead of arguing with her, we waited to talk with a banker today. The banker told her exactly what I had been saying all along. Of course my mom will not tell me that I was right, or that she made a mistake. Honestly there are times I feel like I am the one going crazy. But I try to remain patient and handle each crisis as it arises, and I assure you there is NEVER a day without one or many crises. 

Now that is just my mom. But understand while managing my mom, I also juggle my dad. While trying to get them in the car this morning to get to the podiatrist appointment, my dad told me he had to urgently go to the bathroom. Mind you I took him to the bathroom five minutes before leaving the house. So I got my mom in the car and then turned my dad around and took him back to the bathroom. By that point I was too late. He had pooped on himself and while taking off his depends, the poop went everywhere. In the midst of this juggling act, he urinated all over the floor. I had to clean him, clean the bathroom, and the floor, and then turn around and get him back in the car and to the doctor's office. How we made it on time, I don't know!!! Honestly if someone did a reality TV show about my daily life, it would be hard to watch. 

Monday, February 20, 2023

Monday, February 20, 2023

Tonight's picture was taken in February of 2009. This was a typical physical therapy session for Mattie. In order for us to get him to buy into the process and participate, we allowed him the opportunity to test things out on us. If we were willing to do the exercises, then typically Mattie would then try it! Smart fellow! Any case that day, Anna (Mattie's physical therapist) wanted Mattie to play a game like twister. So literally Anna and I took our shoes off in the middle of the hallway, and we followed commands Mattie was shouting out at us!

Quote of the day: A mother cannot give birth to a child and not lose a piece of herself. The child takes a part of the parent with them, holding it as their own. Whether it be their heart or soul, they are now connected for always. ~ Sejal Badani

On top of my usual routine, I am busy working on the Foundation's walk and raffle website. It would be lovely if this site would just magically create itself. But one thing I am grateful for is that I am only updating or revising a template I created a few years ago. In 2020, the company we use to manage our Walk, updated their technology. This meant that I had to create a website from the ground up. That was a steep learning curve for me, but I was determined to do it! Thankfully this technology change did not happen when my parents were living with me, because my stress would be through the roof. As it is hard to even return emails with them in tow. 

My parents think only of their immediate needs and concerns. Case in point, I was in the kitchen having a conversation with Peter about a job lead. As many of you know, Peter is actively looking for a job. Peter has been working hard and doing a lot of research as it pertains to a particular opportunity. He was updating me on this work! At the same time, we heard my mom clopping down the staircase (and I mean clopping, you can't miss her). She came into the kitchen, handed me her cell phone and wanted me to address several things on her phone right there and then. 

If she was rational, I would naturally have told her to wait until I was finished talking and then would help her. However, now that my parents have been living with me for 14 months, I know I can't hold my mom to the same expectations I would have in the past. Instead, Peter and I both know that we have to stop talking and manage her issues. If not, things spiral out of control quickly and I was in no mood for an argument and histrionics this evening. 

Nonetheless, day in and day out of this behavior is challenging and emotionally exhausting. I am not sure the average marriage could handle the stress we are living under. Fortunately though, Peter and I know all about caregiver stress and not being able to live a normal and free life.

The highlight of today was the weather. It is beginning to feel like spring. Even our yellow crocuses are popping up!

Check out who loves the bird traffic! Miss Indie is a riot and if we listen carefully, she chatters at the birds in the window. 

Sunday, February 19, 2023

Sunday, February 19, 2023

Tonight's picture was taken in February of 2009. Mattie was in the hospital hallway with Anna, his physical therapist. What you are seeing was a typical therapy session. Anna learned early on that Mattie's sessions would require creativity, a level of competition, and a lot of cheering to be successful. In fact, Mattie never did a particular activity without one of us demonstrating it first! Smart fellow. As you can see, Anna was showing Mattie what she wanted him to do with his feet! To basically stomp down on this air pedal, which would send a toy rocket into the air. 

Also notice Mattie's IV pole. There was NOT one day without Mattie's pole being decorated. Our friend Junko and her mom made Mattie two different sets of origami cranes. Each crane was made with great thought and prayers for Mattie's healing. We loved these cranes so much that we literally brought them back and forth from the hospital with us. They always hung on Mattie's IV pole, up to the day he died. Now one of the sets with 1,000 handmade cranes is on display in my home office. These cranes mean a lot to us.... for the time and effort it took to create them, to the fact that they symbolize incredible community support and love. 

Quote of the day: Our connection with our intuitive self is ever present and always a part of ourselves. ~ James Van Praagh

Yesterday we took my parents out for an early dinner. In fact dinner now is at 2 or 3pm, because the later we get into the day, the more out of it and exhausted my dad is!

While at the restaurant yesterday, Dawn (one of the servers we love), brought my dad a cupcake! The reason for the cupcake was she was trying to reward him for good behavior at Friday's meal. 

My dad can be like a broken record. He will ask Dawn the same questions over and over (such as.... is the food fresh, can I see the resume on my server, does the restaurant still allow tipping). He is so repetitive with her, that I began to do games at the table. 

Games that involved a report card, or in December I launched... 'December dollar days.' Every silly or repetitive thing my dad said to Dawn, she would get a dollar. Dawn did well in December... try a sum total of $100! 

It was a game but it was also was one of our holiday gifts to Dawn. Friday before Valentine's Day, I launched '$5 pre-valentine day.' Again with every silly or repetitive thing my dad said to Dawn, she earned $5. That day, she received a $75 valentine's day gift!

My dad and Dawn!

Today was not one of my finest moments. I dragged myself out of bed and did my usual routine. When I got upstairs to wake up my dad, I started by trying to get into their clothes closet to pick out items for my dad to wear after his shower. However, each morning trying to get into the closet is a nightmare. Why? Because my mom insists on working out of the closet. In fact, she stands right behind the closed closet door (there is a mirror behind the door). There she puts on her makeup and gets dressed. I frankly don't get this since she has her own bathroom and dressing room to use. I don't get why she doesn't use it, but prefers to stand in a closed closet where the lighting isn't great. 

In any case, this morning I was in no mood to dance around her in the closet, so I started screaming. Again, not nice, and not patient. Just exhausted and at my wit's end. I think I aggravated her so much from my screaming that for the rest of the morning she was nauseous. Of course that wasn't my goal and I have to learn to be calm. MORE CALM. For the most part I am, but at times, I am only human and can handle just so much. My mom likes to pepper me with the fact that she would like to move out, because she doesn't like how I curtail her freedom (to drive specifically), or better yet I love it when she tells me that her life is so different now and she isn't happy. There is NO acknowledgment at all on how this daily caregiving schedule impacts me. 

In between the usual juggling act, I went back to creating the Foundation Walk's webpage. I am trying to tackle a little of it each day, as I want this site launched in March.