Saturday, October 25, 2025

Saturday, October 25, 2025

Tonight's picture was taken in October of 2004! Mattie's second Halloween! By that point in time, Mattie understood the notion of trick or treating a little better! I don't know about you, but to me Mattie was the cutest POOH around! I will never forget picking out this outfit together and snapping this photo. As I mentioned before, Mattie only liked going into three stores. So that year, we went shopping for an outfit and came across this adorable sweatsuit. The soft and cozy nature of the material got the Mattie seal of approval. But Mattie also loved Winnie the Pooh! I introduced Mattie to Pooh stories early on! On an aside when I went to college, I will never forget that in my freshman year our college president read us a story from Winnie the Pooh. He was Welsh and he recited the story with his wonderful accent. Pooh even had relevance in college. To this day, when I hear Winnie the Pooh, I get transported right back to college and raising Mattie. 

Quote of the day: Sometimes moments in life are so perfect you want to freeze frame them; capture them within your soul forever so they never fade away—they burn themselves into your being until they’re a part of who you are. ~ Cassandra Giovanni

Recently I was sent two books on Alzheimer's Disease. It is always interesting to receive a book on a topic you are living intimately with each day. After all, you don't look at the book with the same questions and interest as you would if you were trying to learn about a novel topic. It is also very interesting to read about the theoretical nature of a topic, versus having the lived experience. I think many books try to cover useful topics, resources, and even highlight insights from other caregivers. However, what so many of these books lack is pure honesty. Some issues, like caregiving do not have pretty solutions. What works for one person may definitely not work for the next caregiver or family. There should be a chapter of being stuck, for feeling like there is no end in sight, with a future that is bleak and the list goes on! This is the reality, and the reality needs to be normalized and confronted. 

I remember when I was doing my dissertation and interviewing countless caregivers of older family members.... they felt stuck. They were overwhelmed, they were exhausted, and they had FEW TO LITTLE OPTIONS. Many of them landed up crying as they were talking. I remember their quandaries, I remember their heartache and angst, and I remember leaving each interview literally saying a prayer for each of them....... that God walk with them and give them the strength to manage through another day. Now walking through my own caregiving journey (once again!), I have even greater empathy for the caregivers I interviewed almost two decades ago! 

What I did gleam from my reading last night is that I am performing heavy duty caregiving and that my dad is fast approaching the late stage of Alzheimer's. There are three stages to this disease: early, moderate, and late. 

When my dad was living in Los Angeles, I saw many more behavioral issues that are listed here. He would lash out, curse, be hostile, and irrational. All of that has dissipated and the one blessing for him being so sedentary, is that he doesn't have the inclination to get up and wander! 

My dad's doctor chatted with me on one particular occasion, when my mom was not present. He wanted to prepare me for the future when my dad will not be able to swallow or walk. As it is, my dad basically does not communicate now. He recognizes some people that he sees daily, but has no memory of them after about a minute. He needs full assistance with bathing, dressing, and personal care, he'd sleep the day away if I let him, and of course he is incontinent to bladder and bowel. 

But with late stage Alzheimer's, people can become very immunocompromised and easily get sick with viruses and pneumonia. So needless to say, I am forever vigilant. 

I typically take my parents out to a local restaurant every Saturday. But today our favorite server text messaged me and told me not to come. There were logistical kitchen issues, and he did not want my parents to be impacted. So I took them back to a restaurant we tried last week. I have to work harder at this particular restaurant, but we managed. For me, going out is a chance to interact with people and have more normal conversations. I missed that opportunity today. It is challenging eating with my parents as my mom is lost surfing the web on her phone and my dad is simply in a fog. It is hard not to let this sight emotionally get to me, wear me down, or get depressed. 

But I think I am TOO anxious these days to be sad. Today's nightmare is the first floor furnace isn't working. It is absolutely frigid in the house! I already contacted my HVAC person and I am hoping this will be an easy fix next week. I have wasted more time, energy, and money on these furnaces! Ironically I just had a heating inspection two weeks ago, to avoid such issues. So much for that!

Then I got a text message from my plumber today. He is leaving the company I have a service contract with, and for me, I am devastated. I have worked with him since 2021, and he knows me and this house quite well. I am sure this sounds fun.... how could I miss a connection with my plumber?! Well if you know me, then you know it is possible. I get very attached to people, especially people who are kind, capable, and dependable. Literally I had to take a deep breath today, and remind myself, that I will figure it out. But I am TIRED of having to figure everything out, of being divorced, and not having the support that I always thought would be present in my life. 

Friday, October 24, 2025

Friday, October 24, 2025

Tonight's picture was taken in October of 2003. Mattie was a year and a half old. Though Mattie did not quite understand the notion of Halloween yet, he and I went out to look for something holiday-ish! Mattie liked shopping in only three stores. So we went to one of them and I saw this cute pumpkin sweatsuit. Mattie gravitated to orange and pumpkins, so this was the perfect find. Mattie also did not like anything scratchy or tight, so this outfit was soft and cozy! Right up his alley!

Quote of the day: There is nothing so agonizing, or so dangerous, as a memory unexpressed, unexplored, unexplained, & unexploded. Grief is the grenade that always goes off. ~ Amanda Gorman

Never a dull moment at my house. I got up extra early today, because the nurse helping with my dad's pressure sore care came over at 9:30am, before I had to take my dad to his memory care program. When she arrived she took his blood pressure and heart rate, and at rest, my dad's heart rate was 103. Keep in mind that the normal range is 60-100 beats per minute at rest. This was the third time this week that this elevation occurred. While my dad was at his memory care program, the center contacted me to let me know that his heart rate at rest was 113bpm. So one elevated number, to me, would be a fluke, but three times made me pause. 

After the nurse left, I called my dad's cardiology office and spoke to a nurse. I explained the issues and she asked me to send data from my dad's pacemaker to the clinic! This is very easy, as I can do this from my phone! But then she suggested my dad may have a urinary tract infection and that he get a urine test. Sounds easy.... but doing this with my dad is anything but easy. First I would have to get a script for this, then I would have to take him to a testing center, and trying to catch urine with someone who has dementia and is incontinent is close to ridiculous. I told this nurse that I thought this test would be meaningless, because my dad has a huge kidney stone and if you assess his urine, it always gets flagged as having a problem. 

I found this call with this particular nurse frustrating, so I then contacted my dad's primary care provider. He agreed with me, that my dad most likely doesn't have a urinary tract infection, but the doctor was concerned by the elevated heart rate and said that someone needed to see my dad today to evaluate him for afib and arrythmia. So I called the cardiology office back and spoke to a second nurse. I told her what my dad's primary care doctor said and told her I needed an appointment today. She did comply and gave me a 2:30pm appointment. The location of the office she sent me to is my least favorite because parking is horrific! From past experience, I knew I had to take Mattie's wheelchair with me because there is no way to safely move my dad around at that complex. Truly getting my parents into the medical building and up to the office was taxing. I can't tell you how many strangers just come up to me out of the blue and tell me.... I am an angel and they literally are looking for my wings! This isn't a one time occurrence either. I say this because what I am balancing is overwhelming that even people just casually observing me.... GET IT!

Any case, after an EKG, an exam, and a discussion, my dad is fine. His pacemaker data revealed nothing alarming! I could have just ignored all the data presented to me this week about my dad's elevated heart rate, but I didn't! Because with my dad I never know if there is a serious medical concern or just a false alarm. I am thankful today was a false alarm, because the notion of spending more time in a hospital, running back and forth from home and advocating for his care, is beyond me right now. 

This is the highlight of my day! My neighbor brought me an apple pie! For no particular reason, other than.... just because. She is one of many people worried about my well-being, and we meet on occasion just to catch up.  

Thursday, October 23, 2025

Thursday, October 23, 2025

Tonight's picture was taken in October of 2002. This was Mattie's first Halloween. He was six months old. Though Mattie did not get dressed up for the occasion, I introduced him to a pumpkin! The pumpkin was as big as Mattie and his little hand started feeling the top of the pumpkin and checking it out. I always referred to Mattie's hands as little radar scopes! I just loved watching him take the world in!

Quote of the day: The world is shaped by two things — stories told and the memories they leave behind. ~ Vera Nazarian

My dad's physical therapist came over this morning. In order to keep my dad moving, he has four therapy sessions a week. Wouldn't it be wonderful if I could do the exercises with him? YES it would! But he is completely non-compliant with me. So in order to maintain his strength, balance, and endurance, I need the therapists! Because my dad has Alzheimer's, I can't appeal to his common sense, as he just doesn't understand why it is important to walk and be as independent as possible. It is actually very frustrating for me, because my dad does nothing for himself and has no interest in having any responsibility. By the time the therapist arrived, I had already survived three bouts of his irritable bowel issues. Literally by 11am, most days, I feel like I have run a marathon. 

My dad's therapist was talking about Halloween this morning. She has three small children and so far they have changed their minds about what they want to be for Halloween three times. We got a chuckle out of that! The conversation reminded me of my Halloweens with Mattie. 

I put together this photo of the 7 Halloweens I shared with Mattie. They went like this.......................................

• 2002 - no costume
• 2003 - a pumpkin
• 2004 - Winnie the Pooh
• 2005 - A Calico cat (Mattie was hospitalized with sepsis that year and never went trick of treating. So he wore this costume again the following year!)
• 2006 - A Calico cat
• 2007 - An Air Force Pilot
• 2008 - A Mummy

I truly never thought Mattie would be in my life for only 7 years! After all, how many children do you know who get cancer and die? Prior to Mattie getting cancer, I never met one child with cancer! But of course once Mattie was diagnosed, my mindset changed. I see childhood cancer everywhere. Those who don't have this lens, consider yourselves blessed and lucky. Childhood cancer changes everything about a family's life and existence. 

Memories are funny things. I know these 7 years were a part of my life, but they seem so long ago. As if they happened to another person. This is why I keep on writing! Writing forces me to remember details and it keeps them fresh in my mind, as I never want to FORGET any aspect of Mattie Brown. I miss that smile, his antics, his joy for life, and for making the mundane.... fascinating!

In addition to talking about costumes this morning, we also got into talking about favorite Halloween candy. The therapist asked my dad about candy and his response was.... I don't like candy! Not sure my apple came from his tree, as I am ALL ABOUT CANDY! Any case, did you know that Reese's, Snickers, and Kit Kats are the most popular Halloween candies on the market? Yes I can see why, but I will tell you my favorite, it is a Take Five! To me there is nothing like pretzels with chocolate and caramel! 

Though I may be all about candy, Mattie was NOT! In fact, if he went trick or treating with friends, they would sort candy after they collected it and Mattie would eagerly give away all his chocolate candies for lollipops and pretzels! Truly he always made me chuckle!!! 

Wednesday, October 22, 2025

Wednesday, October 22, 2025

Tonight's picture was taken on Halloween of 2008. Our last Halloween with Mattie. Mattie trick or treated at the hospital by day and then went to his friend, Zachary's house in the evening. Mattie decided to be a mummy that year. It was the perfect costume that covered up the fact that his right arm was casted. Pictured with Mattie was Sally the Story Lady! Sally was one of the volunteers Mattie absolutely loved. I mention this because there were only a handful of outsiders that Mattie let in and related to! Sally was one of them. Sally brought stories alive and there was always hands-on participation, which resonated with Mattie. I will never forget this dynamic duo!

Quote of the day: Nothing is more responsible for the good old days than a bad memory. ~ Franklin P. Adams

Mornings in my house are hard. Especially mornings when there are appointments. Today, my mom had a physical therapy session at 10am. However, I forgot to remind her last night and prep her for today. I remembered she had a session today at 7:30am. I literally went to my parents room to alert my mom about the session. She wasn't happy with me, but I have learned to brush these quips aside because I am juggling way too much! I no longer feel guilt, as I am one person juggling three people, a cat, a house.... and everything else!

Today my dad's memory care center was sending me emails about his blood pressure and pulse. Seriously...... what do you expect me to do about this? I corresponded with them all day, trying to figure out why his pulse was so elevated! Given my dad has a pacemaker, it keeps his pulse between 60-100 beats. So the fact that they got a reading of 113, made me suspect! But okay, another thing to keep track of! 

On a complete aside.....Did you know that trees communicate? Literally I came across this article today, How do trees communicate!? Scientists have discovered that there are an intricate network of hair-thin fungal filaments called mycorrhiza, which in many ways act like a telecommunications network. This network uses chemicals, hormones and even slow-pulsing electrical signals to communicate under ground. The communications can be about danger, pain, and in need of nutrients! 

Toward the end of the article, it mentioned that trees are "reluctant to abandon their dead, especially when it’s a big, old, revered matriarch. This suggests that Mother Trees are highly valued in forest societies, and are remembered long after they've gone." This to me speaks to the power of grief and loss. It is not just a human concept. It is a universal feeling that is experienced by any and all living things. Certainly the symptoms of grief and loss look different, depending on the creature we are talking about.... for example if you are an elephant, this animal may gather around the deceased elephant, investigating and touching the body with it trunk, and covering the corpse with soil and branches, or what about the dolphin? Dolphins may carry their dead calves for weeks, touch them, and swim around them as if trying to rouse them. 

What this article reminded me tonight is that so much goes on underneath the surface! We can't see it, but that doesn't mean the feelings aren't there! This is exactly what happens with grief, loss, and trauma! People can't necessarily see our reactions, our symptoms, and our feelings. In fact, they may think we look perfectly fine. But if you take the time and try to empathize and put yourself in someone else's shoes, you may catch a glimpse of the reality. 

This may not look like a big deal to you, but to me it is! For FOUR years, I have had this canvas picture of flowers just sitting on my bureau. The notion was we were going to hang it. But we addressed everything else in the house, but not this picture. I finally had it today! No one is going to take this on..... I have learned if I want something done, I have to do it myself. So upstairs I went with my level, hammer, picture hanger, painters tape, and a tape measure and finally hung this picture. 

Tuesday, October 21, 2025

Tuesday, October 21, 2025 --- Mattie died 817 weeks ago today. 

Tonight's picture was taken on October 31, 2008. Mattie celebrated Halloween both in the hospital at with his preschool buddy, Zachary. Mattie thoughtfully chose this mummy costume. A non-profit donated costumes to the hospital for children to celebrate Halloween. Mattie had a private showing of the costumes, which I appreciated. Because Mattie's right arm was casted and bandaged from a limb salvaging surgery and he was very self conscious about it. When Mattie saw the mummy costume, his eye lit up! The reason of course was the costume hid the fact that his arm was casted. We had a wonderful time trick or treating through the administrative offices at the hospital, decorating pumpkins, and having all sorts of treats! It was an afternoon I will never forget. 

Quote of the day: Memories have huge staying power, but like dreams, they thrive in the dark, surviving for decades in the deep waters of our minds like shipwrecks on the sea bed. ~ J. G. Ballard

Check this out!!!! It is a Lego MRI Scanner set! Thank you Jean for sending me the below article. 

Wow, we could have used this Lego kit when Mattie had cancer. I always said Legos were therapeutic! They got us through some very difficult days in the hospital. But now Legos has created a MRI model that child life specialists model which is being used to help normalize this scary machine for pediatric patients. What an amazing idea. These kits are NOT for sale, but instead, Legos donates them to hospitals. I LOVED THAT IDEA!

These kits have been shown to reduce children's anxiety and it has been found that 46% of healthcare providers reported needing to use less sedation during a MRI after the children played with the set. The article is touching, because it focuses upon a 14-year-old child with cancer who was committed to building this intricate model. Not for himself, but to help the other children in treatment at his hospital. What this article reports, I saw first hand in the hospital. Kids would help one another, bond with each other, and share fears in ways they just couldn't do with their parents! The spirit of a child just can not be broken, even with cancer. 

I encourage you to check out the story, How Lego MRI scanner sets are reducing anxiety in children undergoing medical treatment. In fact, I sent this article to our child life specialist and she told me she is familiar with this kit and that it works beautifully at helping to educate children about the frightening MRI process, thereby making the actual MRI more manageable. 

This afternoon, after taking my parents out for frozen yogurt, I came home and worked outside. It was 70 degrees in October, and I figured I needed to celebrate the warmth. 

In 2021, my former mother-in-law sent us a pumpkin inflatable. I have put out her pumpkin for four years! This weekend, her pumpkin stopped inflating. So to keep the tradition going, I bought this one. 

What is charming about this one is the cat pops in and out of the pumpkin, on its own.

She even lights up at night!

As of tonight, I have brought every plant of mine that gets wintered inside, in the house! It was a big labor, but it is done! The transition inside is always hard, but when they adjust, I just love seeing greenery during the cold and dark days ahead.

Monday, October 20, 2025

Monday, October 20, 2025

Tonight's picture was taken in October of 2008. Without a doubt, I know it was a Friday! Why? Because Mattie was participating in the Chemistry Club's experiment. Every Friday, the University's Club came to the pediatric units. Mattie loved this Club and got along splendidly with Chris, their president. That day they were making snow balls out of dry ice. The kids were given gloves and as you can see Mattie was holding a big ball of ice and was absolutely fascinated. One of the many things I loved about this Club, was I got to experience Mattie the child, NOT Mattie the child with cancer. 

Quote of the day: A person’s memory is everything, really. Memory is identity. It’s you. ~ Stephen King

This morning after I dropped my dad off at his memory care center, I ran back home to pick up my mom and take her to the hospital for her pulmonary function test and follow up appointment with her doctor. I can't tell you how much my mom dreads this test. She started worrying about it on Saturday and by Sunday, she had worked herself up into a silly! There was NO rationalizing with her. Mind you this test is NOT new to her! She takes it yearly, and has done so for years. Nonetheless, you would have thought she was signed up for a horrifying and invasive exam! 

Yesterday, after trying to calm her down about today, I finally said...... this fear is irrational! I told her she doesn't have a tumor, she isn't gravely ill, and this test doesn't hurt! In addition, I told her Mattie, who was six, managed all sorts of tests. So if Mattie could do it, so could she! 

Any case, we know the pulmonary function test tech quite well. He is lovely and understands my mom's anxiety about this procedure and truly works with her every step of the way. Keep in mind that I am right next to her and helping throughout the process. Thankfully the test is behind her, her results are consistent from last year, and when I told the doctor how much she hates this testing, he agreed to forgo it next year. Truly music to my ears, because my mom's level of stress and anxiety adds a whole other layer upon my own. 

When I got home later in the day, I went to my Foundation's email account and guess what???? I couldn't access it! I literally tried everything. I could log onto it with my phone, but not on my computer. I dislike doing any serious work on my phone, so the fact that I couldn't access email through my computer almost sent me over the edge. I finally called the company's customer service and I learned there is an outage and it isn't my fault or problem. The level of stress immediately dissipated. But since my separation, little things frighten me. It is scary knowing that I no longer have my other half to turn to for support, help, and to brainstorm ideas. This has been a massive adjustment for me, because after 35 years, it is only natural to develop a dependence on someone. 

This evening, I made fresh tomato sauce. Since my dad hates tomato skins, I blanch the tomatoes and peel the skins off before making the sauce. Needless to say, my parents ate well tonight. But then again, every day, I work hard to provide them with nutritious and tasty meals. As I always say, thank goodness, I took after my grandmother..... because like her, I am a work horse. She was the ultimate caregiver, so I learned from the best. 

Sunday, October 19, 2025

Sunday, October 19, 2025

Tonight's picture was taken in October of 2008. Mattie made this boxed structure and the foam pieces  represented pieces of cheese. You can't see the little clay mouse Mattie made, but basically the mouse was sitting by his side. Mattie made an elaborate home for this clay mouse, including a staircase of popsicle sticks! I am so grateful Mattie loved to create and build! These fine motor skills were blessings and we turned to them as great diversions throughout Mattie's cancer journey. Mattie may not have been able to walk, run, and stand independently, but he could sit and create without a problem. He was extremely prolific and so many of his wonderful pieces are part of his legacy. 

Quote of the day: The only real treasure is in your head. Memories are better than diamonds and nobody can steal them from you. ~ Rodman Philbrick

This adorable inflatable pumpkin was given to us when we moved into our home in 2021. I have placed this pumpkin in our front yard for four years now. Today I looked out the window, and the pumpkin was deflated! I figured that the chord may have gotten disconnected. NO! Instead, the motor inside the inflatable died! So today I had to say good-bye to Mr. Pumpkin. Since this was a gift from my former mother-in-law, and I send her a photo of it every October, I decided to try to replace this inflatable today! I loved the size and shape of this pumpkin and unfortunately I couldn't find an exact replacement, but the new one comes in on Tuesday. We shall see what I think, but the new one has a retractable black cat that pops out of the top. A tribute to Miss Indie!

Speaking of Miss Indie, today she truly tested my patience. She pooped on the basement area rug twice. Within two hours of each other. Two days ago, I had enough! So I broke down and did exactly what the vet suggested.... I bought a second litter box. I am going to test the vet's theory that some cats as they age want two boxes. Though I did not want to clean out two boxes each day, it will be better than on the floor. This of course is assuming I can get her to use the second box. In my life, I have had 8 cats! Indie is the first cat to ever do this, so I have no experience with such a problem. 

Every Sunday, I take my parents out to brunch. We have gotten to know Cheryl, our server, very well over the last four years. Yesterday, Cheryl's son got married. I was invited to the wedding, but declined to go. I can't imagine doing anything social, much less going to a wedding. I am the last person a married couple wants to be around. Any case, Cheryl shared wedding photos with us today and brought me one of the table centerpieces, a piece of wedding cake, and a box of cookies from the wedding. These are silk flowers and I am honored to have this centerpiece, which I will serve as my Fall centerpiece for many years to come. As many of you know..... I am all about the sunflower!