Saturday, July 2, 2022

Saturday, July 2, 2022

Tonight's picture was taken in June of 2006. That weekend Peter went with Mattie, his best friend, Zachary and Zachary's dad to a Day Out with Thomas. I did not go on this adventure, but I absolutely love this photo! Peter captured the moment of two friends walking together and sharing in this special trip. Both Mattie and Zachary LOVED Thomas the Tank engine, so I can only imagine how animated they were to see a real life train with Thomas' face on the front. 

Quote of the day: I think dogs are the most amazing creatures; they give unconditional love. For me they are the role model for being alive. ~ Gilda Radner

I had a hard time getting up this morning. So I stayed in bed until 7:30am. I need more mornings like this. I did not wake my dad up until 9:45am. However, no matter how much sleep he gets, he still can sleep the entire day away. 

After breakfast, when we usually do brain games and physical therapy exercises, my dad retired to his recliner. He spent the majority of the day like this. 

Which is why taking him out of eat is necessary. It gets him to move physically and it gives him structure as well as the opportunity to interact with the world. The only one activity my dad still loves to do is EAT. 

We went to Rockville and had dinner with one of our favorite servers, Dawn. Dawn and Cheryl have practically become part of our family. These women are great with my dad. The management at this Rockville restaurant knows us well and with each bill, if you complete a survey, you get $10 off your next meal. So religiously I complete the on-line survey. Apparently this is the joke with management, because when I complete the survey I always give feedback about Dawn. One manager said, I should fill out  the survey using a different name so it would look like Dawn is getting feedback from someone other than me (which tells me most customers do NOT complete the survey). I think the manager was joking, but the next time I complete the survey, my name will be Marilyn Monroe. We will see how that goes over. 

We took Sunny out front this evening and look who we almost stepped on! This beautiful box turtle. 

Two interesting facts:

1. Most Eastern box turtles have permanent home ranges. If relocated, a box turtle will often attempt to return to its home area.
2. Female box turtles seek out sunny areas where they lay their eggs in the warm soil by excavating a cavity with their hind feet. Although box turtles are active during daylight hours, the females often use the protective cover of darkness to lay their eggs. After laying from 3 to 6 eggs, the nest is covered with soil and the eggs left to hatch on their own. Box turtles usually lay their eggs during June and July. Hatching takes between 2 and 3 months.

We have tried to relocate this turtle to the backyard, for her safety, but despite our best efforts, she keeps returning to the front yard. Always to the same place. We are also seeing dirt holes in our flower beds and I now get it, it is the turtle trying to create a nest, as it is now egg laying season. Big difference from living in the city!

In the early spring, Peter planted canna lily bulbs. I am a big canna lily fan! The lilies are popping up in the front yard and a couple of them are over Peter's head! My first experience with seeing a canna lily was in Washington, DC. They are all over the city and to me they remind me of my former life. 

Friday, July 1, 2022

Friday, July 1, 2022

Tonight's picture was taken in June of 2005. Mattie was three years old. Peter's mom gave Mattie this cute dolphin swimming pool! It fit nicely on our deck and Mattie enjoyed countless hours outside with the water and his toys. Mattie had a creative mind and he loved to pull me into his antics. 

I miss so many aspects of our townhouse in Washington, DC. It was our home for over two decades and it held so many Mattie memories. Whenever I drive passed our townhouse now, I always wonder.... who is living there? I realize the space belongs to someone else now, but to me it will always be Mattie's home. 

Quote of the day: The worst thing about being tired is the negative twist of perception. ~ Rosamond Rice

Though going to bed late and getting up early, I was able to function. I checked on my mom at 6:45am, and she was up and operational. Her hand is still somewhat swollen, but it is better than last night. She also has the ability to use her hand today. The hand brace, ice, Tylenol and Advil helped. I also am a big fan of arnica gel (a natural alternative that I find is helpful for pain, inflammation, and bruising). I lathered that all over my mom's hand before placing her hand in the brace. Who knows what's working, but I am going with it. 

After I dropped my dad off at his memory care center, two of my friends came to visit. I honestly wasn't sure if I would have the energy, but what I found is their visit helped to change the tone in my house. It went from stressful and moody to one with more life and joy. They were with us for about three hours and I found it restorative. Even Sunny enjoyed the company. Despite it being hot outside, we sat outside on our porch, chatted, and I got to hear about things other than the usual stuff. Not jumping up every two seconds to deal with bathroom issues was a thrill!  

Later in the day, I took my parents out to lunch. While at the restaurant, there was a horrific rain storm. We waited it out and thankfully it stopped. Here is what I saw on the way home, a beautiful rainbow! 

Thursday, June 30, 2022

Thursday, June 30, 2022

Tonight's picture was taken in June of 2006. Mattie was four years old and that day we took him to one of his favorite restaurants in Maryland. Ironically, we now visit this restaurant weekly, as Dawn (a server who does a great job caring for my parents) works there. Of course I remember this moment in time vividly. Unlike me, Mattie wasn't motivated by food. So I always had to bring a bag of activities with me to keep Mattie's body and mind focused and at the table. 

Quote of the day: Tired, tired with nothing, tired with everything, tired with the world’s weight he had never chosen to bear. ~ F. Scott Fitzgerald

Today was the kind of day that if I knew how it was going to play out, I should have stayed in bed. I dragged myself out of bed today, got myself ready, breakfast made, cleaned up, and then got my dad up to shower. While I was getting him up, the doorbell rang. I ran downstairs as it was the refrigerator repairman. Then ran back upstairs to get my dad ready. 

After breakfast, I did my dad's brain games with him and then let him rest in his recliner, because I had to take my mom to her physical therapy appointment. This was her second session. Frankly I do not care for my mom's therapist, but since she likes her, I just go with it. 

In the midst of waiting for my mom at her session, Peter messaged me that Sunny wasn't doing well. There wasn't much I could do about that while waiting in the therapy area, as phone calls aren't allowed! Of course that doesn't stop some patients, one of whom I wanted to smack today. She was talking loud and a mile a minute. 

What I forgot to mention was my mom wanted to drive HERSELF to therapy. She drove and I was in the passenger seat. By the time I got to the clinic, I was a basket case. It was a 15 minute ride, but by the time I got there, I was nauseous and had a migraine. I am trying to convince my mom that her driving days are over, but her insight about herself and her abilities are not in line with the actual reality. 

Once therapy was over, we ran some chores and then headed home to pick up my dad and go to lunch. By the time we got home, my mom was complaining that her right hand hurt. But she thought the pain would go away! FYI.... It DIDN'T! 

Before I left for lunch, I called Sunny's vet. Because of the volume of patients they have, the phone system can be very challenging. I literally used three phones to get through. I left a detailed message and expected a call back. Mind you on Tuesday, I had a disagreement with the nurse because she was arguing with me about Sunny's diet! She feels he needs more fiber and that his lack of a balanced diet helps to explain his diarrhea and nausea. She needs a 411..... Sunny is on chemo and this is impacting how he feels, NOT his diet. Someone has to give me strength. 

A nurse called Peter back today while I was out with my parents and prescribed an appetite stimulator. I was LIVID. Sunny has an issue with chemo, and instead these nurses keep adding bandaids to a BIG problem, without addressing the cause. Needless to say, the vet himself called me today and I went off on him. He understood me, and also felt that I was correct, the problem is the chemo. So Sunny is taking a week's break from chemo, in hopes that we can stabilize him. Then we will discuss another oral chemo. 

In addition to Sunny having a bad chemo reaction today, my dad had five bouts of diarrhea, and I had to take my mom to urgent care tonight because her hand swelled and she couldn't use her thumb or wrist.  

I figured urgent care would be quicker and helpful. Wrong! In fact, I rather wait hours in an ER than go to urgent care again. The quality of physician is poor to say the least. They did take three x-rays, but the doctor couldn't determine if she has a hairline fracture, or whether it is just arthritis. In any case, my mom is in terrible pain and can't do anything for herself now. So I undressed her tonight and helped her brush her teeth. 

When I brought my mom home from urgent care, my dad seemed more concerned about his own needs and was ready to go upstairs to bed. It was a juggling act helping my mom and getting my dad to bed at the same time. I am honestly frazzled and today landed up having fits of screaming, as I am tired and stressed out. Not that my daily routine isn't bad enough, but I forgot to mention that Sunny woke us up at 2am as he had diarrhea. Therefore, I have no peace by day or night. 

Wednesday, June 29, 2022

Wednesday, June 29, 2022

Tonight's picture was taken in June of 2006. Mattie was four years old and like so many weekends, that day we went to Roosevelt Island. It was a place Mattie absolutely loved and it was just about five minutes by car from our home. The Island was a special place to walk in EVERY season. I miss those walks and whenever we were there after Mattie died, it felt like we were reconnecting with him. It is a special piece of nature for us, that as a family stimulated us when Mattie was well, it provided us joy when Mattie was undergoing cancer treatment, and it provided comfort and peace after Mattie died. How can one place serve all these roles? I don't know, but it did!

Quote of the day: Dementia does not rob someone of their dignity. It’s our reaction to them that does. ~ Teepa Snow

Sunny was activated last night. He wanted to go outside, especially in the front of the house. No surprise, look who was trotting around? Mr. Fox!

Peter took Sunny to the vet by 7am. Sunny needed another urine culture, as his last sample got lost in transit. Which I was not happy about. Poor Sunny thought he was going on an adventure. By the time he got to the vet, he was shaking from fear. Sunny is now down to 60 pounds. So he has lost 10 pounds so far on chemo. 

My dad went to the memory center today. While there, I called the outpatient rehab clinic at the hospital we go to. I received scripts from my dad's rehab doctor, and arranged for all three therapies. The woman on the phone was throwing dates at me so quickly, I was scribbling them down and trying to make sense out of them. All I know is my summer is completely filled with balancing my dad's needs. The schedule is hard enough, but now add on a thirty minute drive each way, twice a week, on top of my mom's PT sessions (twice a week) and I am done! 

Just so you know, I also have a cat buddy, Miss Indie! A loving and loyal soul. 

Tuesday, June 28, 2022

Tuesday, June 28, 2022 -- Mattie died 665 weeks ago today. 

Tonight's picture was taken in June of 2006. Mattie was four years old and don't ask me how or why he decided to cool off in the kitchen sink, but there you have it. This was the many antics of Mattie. He went from being afraid of water, to absolutely loving it. Most times I would have to pull him out of a sink/bathtub because he was water logged. Of course no water play was complete without toys and cups, which were on the kitchen counter. 

Quote of the day: Have you ever walked along a shoreline, only to have your footprints washed away? That's what Alzheimer's is like. The waves erase the marks we leave behind, all the sand castles. Some days are better than others. ~ Pat Summitt

I literally pulled myself out of bed this morning. If my parents weren't here, I would get up much later than I do, as I have never been a morning person. But now, I have to be up by 6:30am, in order to manage the myriad of tasks I have to do before I wake my dad up. 

When I got upstairs this morning, I could see that my dad marked off Tuesday and Wednesday in his hygiene chart. I have set up this chart by his bathroom sink, because he was brushing his teeth multiple times at night and shaving several times as well. My hope was that this check list would help. Again a BAD assumption, as my dad has NO concept of days and times. So each time he wakes up during the night, he thinks it is a different day. Which is why when he woke up throughout last night, he thought one moment was Tuesday and the next was Wednesday. So like downstairs, I just bought him an electronic clock/calendar. This second one will go in his bathroom. It is my hope that this will help orient him to time, day, and season! I now realize my check list, though helpful, shows his pervasive dementia and how it impacts his ability to function and be oriented to time and day. 

 

The Sunman got a grooming today. His groomer is lovely and she understands that Sunny doesn't like water. Sunny visibly shakes when he knows he has to take a bath. Courtney picked Sunny up for me and carried him into her grooming truck. Sunny is such a good boy, no one is ever afraid that he will snap and bite. It is not Sunny's disposition. He is compliant and wants to please. 

He looks and smells much cleaner, which is important, now more than ever, with chemo treatment. 

My mom started physical therapy today. I took her to her outpatient appointment. Her session was an hour and she liked the therapist and is positive about it helping to relieve her neck pain and improve her balance. As her head is hunched far forward, impacting how she stands and walks. Now of course, the kicker is my dad qualifies for outpatient physical therapy and speech. I just got a script for these therapies from his physical rehab doctor. The ONLY place to access speech therapy however is a hospital. So that means I am taking my dad to the hospital he went to for his pacemaker. He will get weekly physical and speech therapy. Which is a problem as my mom is doing PT at a different location. Unless I want to be shuttling them throughout the week to these sessions, I have to figure out how to get them into the same facility for therapy. Honestly I feel like I am never sitting still. 

This afternoon, after I made lunch, I encouraged my dad to come out with us for frozen yogurt. He was hesitant, but came. I think it sunk into his head last night that he has dementia. As he truly did not think he had it, but when asked, I said.... yes you were diagnosed with dementia. I explained to him that everyone at the memory care center was diagnosed with a form of dementia. I see no purpose is lying about the reality. As I strongly believe that it is important to take an active role in one's physical and cognitive health each day. The more stagnant one is, the more I believe the body and mind turn into unusable matter. 

Monday, June 27, 2022

Monday, June 27, 2022

Tonight's picture was taken in June of 2006, at the Cardboard Boat Regatta at Lake Accotink Park in Springfield, VA. It was our first time at the regatta and Mattie loved it! Basically people design boats out of cardboard and there are competitions and races. Mattie wanted to do this with Peter in the future. Unfortunately that never happened. But it is thanks to Mattie that I got to experience fun adventures like this, because prior to having Mattie such an outing would never have dawned on me. 

Quote of the day: For every minute you remain angry, you give up sixty seconds of peace of mind. ~ Ralph Waldo Emerson

Well given Emerson's quote, I have given up A LOT of my peace of mind lately. I was jumping from one thing to another today. I thought when my dad was at the memory care center, I would have a moment to catch up! Forget it. Sunny's oncology office called me about four times this morning. One of the calls was to check to see if Sunny was eating, as he was having trouble eating on Thursday. 

Needless to say the nurse and I got into it on the phone. She intimated that Sunny isn't actually nauseous, but instead being manipulative and picky about eating. Implying that the problem was with me and NOT with the dog. It was like deja vu all over again. When Mattie completed 13 months of chemotherapy, he literally went on a hunger strike. I couldn't get him to eat anything. His doctor said to me that he was manipulating me and even suggested he was developing an eating disorder. None of that sat well with me, because I KNEW Mattie. Turns out I was correct, because six weeks off of chemotherapy, Mattie's cancer metastasized throughout his body. It wasn't being manipulative at all, it was about having extensive disease!!! So unfortunately this nurse today pushed all my buttons, as I heard these lines before. The only difference today was that it was suggested that I was being manipulated by my dog! Whether human or dog, I just won't stand for it! Like Mattie, I also know Sunny. 

If that wasn't bad enough, the nurse began to lecture me about nutrition. Another hot button of mine! I get it, what you eat can impact your health and also perhaps influence your recovery! Though that to me is more speculative than fact when it comes to cancer care! In any case, she argued with me, and wondered why I don't feed Sunny kibble! She questioned why I home cook his food. Mind you I have been doing this for years! This isn't new! I found Sunny gained 15 pounds on kibble, so a long time ago, I removed it from his diet.  

Sunny is now on a high protein diet. Mainly because Sunny seems more eager to eat meat rather than vegetables and grains right now. The nurse told me that Sunny's bouts of diarrhea may be the result of the imbalanced diet I am giving him. I would like to suggest that she come here and try to get chemotherapy, premeds, and food down Sunny's throat, and then we will talk. She set me off, and then tried to make the analogy that if I were sick, wouldn't I want to eat a balanced diet?! REALLY!!!

I corrected her, because we are talking about Sunny! If she wanted to talk to me about humans and cancer, then I think she and I would have a very different perspective on nutrition. All I know is when Mattie was undergoing chemotherapy, getting him to eat anything was close to impossible. So whatever he wanted to eat I deemed better than NOT eating at all. There are real physical consequences to treatment and it impacts taste, digestion, and the desire to eat. So no I don't believe in giving kids and parents a lecture on nutrition. Instead, I believe that parents make the best decisions possible to help support their children throughout the cancer journey, and therefore we have to pick our battles. Fighting over food should never be one of them. 

Honestly how we went from Sunny's care to human care, is over the top, and to me NOT helpful. Not helpful because instead I was reliving my journey with Mattie and unable to truly focus on Sunny! Any case, I spent the rest of the morning baking chicken for Sunny, cooking rice, potatoes, and carrots! 

That was only a few of the calls back and forth, then the last call was to tell me they lost Sunny's urine sample in transit. So they need another sample! These folks have no appreciation for what I balance in a given day. Their mistake causes more juggling in my schedule. 

Meanwhile, since Peter was flying back from Boston later today, I took my parents out to lunch to see Dawn (a server at the restaurant). Dawn is typically good stimulation for my dad, but this was my dad today! You can see, he was in a fog. When I got to the restaurant, I dropped my parents off in front of the door, while I went to park. By the time I got into the restaurant, I found my mom standing up at the table, and my dad keeling over. He had to go to the bathroom, and fortunately I arrived in time to get him up and to the bathroom. He doesn't want to go with my mom, as he tells me she has NO idea what to do. But I truly can't be away from either of them for more than five minutes, because havoc can ensue quickly. 

When Peter arrived home, he surprised me with this gift. His mom wanted me to have Peter's paternal grandmother's engagement ring. I have heard that Peter's grandmother and I were a lot alike. Needless to say, we have the same ring size and I think the setting is very vintage and Victorian, which is right up my alley! I am honored to have this piece of family history. 

Sunday, June 26, 2022

Sunday, June 26, 2022

Tonight's picture was taken in May of 2007. This was Mattie's VERY first rollercoaster ride. We were at Dutch Wonderland that weekend, and I honestly did not know how Mattie was going to react to such rides. If he were like me, he'd hate them and they would provide great fear. In this particular instance, Mattie was exactly like Peter. Mattie took to the ups and downs like a duck to water. I can't remember how many times Mattie went on that ride that day, but I photographed the very first time. While this was going on, I was also observing parents teasing their young son about being afraid to go on the rollercoaster. They were waiting in line to board one of these rollercoaster cars. They were relentless with this child and finally I couldn't help myself, so I spoke up and gave it to them. They did not know what hit them!

Quote of the day: Carry out a random act of kindness, with no expectation of reward, safe in the knowledge that one day someone might do the same for you. ~Princess Diana

Peter sent me some photos today from Rockport, MA. He took his parents to the Lobster Pool, a restaurant with great lobster by the water. 

I have been to this restaurant many a time with Peter's parents and they sent me a photo that they were thinking of me. 

Peter's parents enjoying their time with Peter!

If you read last night's blog, you will know that Peter was driving his parent's car yesterday from Massachusetts to Connecticut. The family gathered together to support Peter's uncle who is dealing with an aggressive cancer diagnosis. On the highway, one of the tires blew out. Peter put the tire in the trunk, and photographed it! This is extremely scary to hear as I know full well, that I am fortunate Peter is alive to tell the story. Peter is an experienced driver, which is probably the main reason they are all alive!

This afternoon, I took my parents out to brunch. Every Sunday we go to the same place and have the same server, Cheryl. We have gotten to know Cheryl over these 8 months and it turns out that one of her children is a cancer survivor. So we share childhood cancer and other things in common. For the next ten days, I knew Cheryl was going on vacation. However, she told me last week that she was going to work brunch today before heading to the beach. 

Since we are so fond of Cheryl, I bought her a Hallmark card and we put cash inside the card as a vacation gift. When we arrived at the restaurant today, we learned that Cheryl wasn't there! I was upset by this, especially since I wanted to give her my card. 

But this is the kind of person Cheryl is......  do you know that she called the restaurant today and asked if we were there? Not only did she do that, she drove to the restaurant and came to see us before going on her trip! As she knew we were coming in today, and though she tried to text message me earlier in the week, I never received her message that she wasn't going to be working today. Cheryl is bright and has a sixth sense about caregiving, so she knew if I got my parents in the car to come today, that I most likely would be upset that she wasn't at the restaurant as promised. 

Cheryl came to the restaurant, found us, pulled up a chair and sat with us for a few minutes. She even treated us to glasses of wine today!

It is so wonderful to know a person so kind and thoughtful. A person who thinks outside herself, and can empathize with another person's plight and feelings. I am very fond of Cheryl to begin with, but today really cemented to me what a class act she is! 

This is a photo of the card I gave Cheryl. The front of the card features a beautiful sunflower. Cheryl wears a sunflower pin, which I noticed immediately when I first met her. So in the card I told her my own sunflower story and why these flowers are SO special to me. I now have Cheryl's cell phone number and we have been text messaging back and forth today. I know my parents were upset to leave California and the various servers that cared for them there. However, I have to say the people we have met in the last 8 months, have restored my feelings about humanity.