Saturday, July 22, 2023

Saturday, July 22, 2023

Tonight's picture was taken in July of 2003. It was Mattie's first trip to the beaches in North Carolina. He was definitely intimidated by the ocean and strongly disliked his first encounter with the sand. So instead, we went on little adventures. That day we went to Jockey Ridge State Park and explored their NASA exhibit. Naturally I had to snap a photo of Mattie as an astronaut. Though Peter was a good sport, he had an upset stomach and felt very nauseous all day. 

Quote of the day: If Plan A doesn’t work, the alphabet has 25 more letters. ~ Claire Cook

When Peter is away, this is what the bottom of our staircase looks like at night! I block the entrance to the stairs with dining room chairs. I feel this is the best way to prevent Sunny from climbing the stairs. I certainly don't mind if Sunny comes upstairs, the problem is once he is upstairs, he is frightened to come down. I think it is a combination of the height and the fact that we do not have carpet on the stairs to give him traction. Needless to say, if he comes upstairs, I have to carry him down, which I can't do without help. 

 

So far the chairs have been a great deterrent. Though I have to say I miss those days when Sunny could come up the stairs and spend the night with us in the bedroom. When Sunny was much younger, he literally would jump on our bed in the morning! With Sunny we really did not need an alarm clock. Of course all of that has changed now. 

After the full morning routine, I decided to get in the car and take myself to our local farmer's market and then grocery shopping. I love fresh produce from the farm and today in addition to purchasing fruits and vegetables, I bought two bundles of sunflowers. I absolutely LOVE them! I can't see these flowers without thinking about our amazing Team Mattie. Team Mattie was our network in the community who met our every need for over 14 months. Absolutely incredible people who showered me with sunflowers!

The highlight of my day was my neighbors Judi and Larry came over to visit. This wasn't a planned visit, but I find spontaneous gatherings sometimes can be a lovely surprise. It was nice to be able to just sit and talk for an hour. My dad was sleeping through the visit in his recliner, but my mom and I enjoyed the conversation. It truly broke up the day and was a terrific diversion. My neighbors also gifted me a homemade apple pie, and besides chocolate, I am a big pie fan!

Friday, July 21, 2023

Friday, July 21, 2023

Tonight's picture was taken in July of 2003. It was Mattie's first trip to the beach. Because he did not care for actually going on the beach, we looked for all sorts of activities to keep him engaged. So we went to the aquarium. They had a sting ray petting tank and you can see in this photo a discussion I was having with Mattie about whether or not he wanted to touch the sting rays. The beauty of Mattie was that he had a natural understanding and caution for things he did not understand. It did not stop him from participating, but he did things on his own time schedule and I learned to follow his lead. 

Quote of the day: Obstacles don’t have to stop you. If you run into a wall, don’t turn around and give up. Figure out how to climb it, go through it, or work around it. ~ Michael Jordan

When Peter is away, I now block the staircase to the second floor with chairs. I do this to prevent Sunny from coming upstairs at night. Karen helped me this week carry Sunny downstairs, but without an abled bodied adult, there is no way I can get Sunny down safely on my own. Last night we had another winner of a thunder storm. I was too tired to get up! When I went downstairs this morning at 6:30am, I saw that the chairs in front of the stairs had been moved. Moved, but not moved enough to climb up the stairs. In Sunny's hay day, he would have had the strength to use his body and push the chairs away. This is no longer possible.

As soon as I got downstairs, I did a point by point search for Sunny. He wasn't on the first floor, so I headed to the basement. At first I did not see him down there either and panicked that maybe he did get to the second floor and was in Peter's office. But then I found him! Sunny was hiding in the storage closet in the basement. It is the quietest place in the house. Smart dog, despite the fact that his hearing is going from the chemo. 

Managing Sunny's needs is takes time, time that I need to factor into my day. As Sunny first has to be pre-treated with anti-nausea drugs a few hours before I can give him his oral chemo each morning. At one time, Sunny used to love eating. He would devour food. Now there is nothing that truly interests him. His old favorite treats like steak, bacon, and hotdogs, don't work! I am cooking all sorts of food to inspire Sunny to eat, and the funny part about this is when my dad sees Sunny's plate, he wants to eat it. I guess I can make it look appetizing, wish it worked on Sunny. 

The day to day observations of decline that I live with are noteworthy and though it can be depressing at times, I try to plug through it the best I can and at the end of the day, what I learned with Mattie is...... I want NO regrets. I care for those entrusted to me in the best way that I can, and hopefully if and when I age, that I can live independently and care for myself. I am gleaming a lot of insights from my parent's situation and God forbid I get dementia, I hope that I will write notes to myself to help me keep track of my day. Despite my best efforts with my dad, he has NO interest in taking notes, or doing reflections to help him remember. I have to think this is part of his personality, mixed with the disease. Mattie's blog, over the last 15 years, has given me great discipline to write daily and once again, even in Mattie's death, he continues to be my life's greatest teacher. 

Thursday, July 20, 2023

Thursday, July 20, 2023

Tonight's picture was taken in July of 2003. Mattie was a year old and it was his first trip to the Outer Banks of North Carolina. I LOVE lighthouses and that summer, we introduced Mattie to these beautiful structures. We went to three of the lighthouses on the Island. Here we were standing in front of Bodie Light. We did not climb up this lighthouse, but I felt it was important to provide new adventures that would stimulate Mattie's mind and body. Mattie took to learning and exploring like a duck to water, and in the process, I learned so much more because of him.  

Quote of the day: A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles. ~ Christopher Reeve

It was a big day for Peter! He had conference sessions, then his first in person board meeting, followed by a board dinner. Of course in my opinion, it is always important to dress the part. 

I took Karen and my parents to Chez Francois today for lunch. It was a lovely weather day and we enjoyed our time out on the patio. They did not rush us and we literally had a four hour lunch. 

When our server heard that my birthday was next week, he brought me out a special dessert! I love their meringue, so it was a special treat! Of course no meal is ever without angst, as my dad did not make it to the bathroom in time, and mid-meal I had to change him. My role is not for the faint of heart or stomach!

Wednesday, July 19, 2023

Wednesday, July 19, 2023

Tonight's picture was taken in July of 2004. Mattie was two years old. That was Mattie's second trip to the beaches in North Carolina and by that time, Mattie loved playing in the sand. That day we walked on the huge sand dune of Jockey's Ridge. Mattie was raring to go and he wanted to keep up with his cousins, who were older than him, and already many feet ahead of him. Mattie was all about adventure, exploration, and never wanted to leave me behind.  

Quote of the day: It’s your reaction to adversity, not adversity itself that determines how your life’s story will develop. ~ Dieter F. Uchtdorf

We had enormous storms in Virginia last night. Torrential rain, lightning and thunder. I went on for hours. I saw all sorts of flashes outside my bedroom window at 5:15am. Though I was worried about Sunny, I was too exhausted to move. When I got up at 6:15am, I went downstairs to feed Indie and looked for Sunny. There was no sign of him on the first floor, so I assumed he went into the basement with Karen. Since I saw the basement door cracked open, that was my assumption. I then went back upstairs and showered and got dressed. When I opened my bedroom door at 8am, Sunny was there waiting for me. That was a HUGE problem, because Sunny can get up the stairs but he is afraid of heights and can't get back down. Sunny is 70 pounds and I tried putting his physical therapy harness around him and coaxing him downstairs. He wouldn't budge. So I escorted him to my bedroom and closed the door. I had to wait until Karen came upstairs, to help me with Sunny. Thankfully Karen was here, otherwise, I would have had to find a neighbor to assist me. I took Sunny's front end and Karen lifted Sunny from the back quarters. We got him safely downstairs but now when Peter isn't home, I am going to put chairs in front of the stairs to prevent this from happening again. 

In the midst of dealing with Sunny, while I was preparing breakfast, I could hear my dad wandering around upstairs. Typically he sticks to his bedroom, but today, he wandered into the hallway and was headed for the staircase. I let out with a howl and that stopped him in his tracks. He claims he got up and started for the stairs because he was worried about me! I have NO IDEA what was going through his mind. He is claiming that he doesn't sleep at night, but instead is in bed with his eyes open all night. I have to keep an eye on him, but I am hoping this is his reaction to being on steroids, to manage the allergic reaction from bug bites. Though with my dad, he could just be manufacturing all of this, and none of it maybe based in reality. 

I took my mom to the hospital today for her weekly physical therapy appointment. The therapy department has moved from the main hospital and is now located in the brand new outpatient pavilion. I watched them literally build this enormous addition to the hospital campus. It seemed like the whole addition went up in a matter for two years. Totally remarkable. Part of me was excited to see the new space. However, what we LOVED about the former therapy department was that it was in the main hospital building, and the department overlooked the hospital's beautiful atrium, and within the atrium were always guest musicians playing the grand piano. There is one musician who visits the hospital who we love. Now that my mom's sessions are in the new pavilion, we no longer have easy access to the atrium and the music. To both of us this is a huge loss. Putting that aside, I want to meet the interior designer of this new hospital pavilion. It is overly white, antiseptic looking, and frankly walking through the hallways makes you feel like you are in a mental hospital. 

The outpatient physical therapy clinic, though state of the art, is not warm, inviting, or a space you wish to spend much time in! It is quite clear to me that who ever designed the clinic did not take into account input from the therapists themselves or patients. If they had, the space wouldn't look as it does. Needless to say, the new space threw my mom off and though I typically don't welcome change, I can safely say that NOT all improvements are beneficial. 

When I picked my dad up at the memory care center today, he greeted me with sheer anxiety and was agitated. He wanted to know why I did not pick him up at 2pm. I did not understand this because for the past month, I have been picking him up later and later. I am doing this to take a break from the intense caregiving I am providing him. I tried to discuss this with him, but he was too wound up. He then explained that the staff parked him in the front room, to wait for me. Meaning that he wasn't participating in activities in the afternoon, but simply waiting for me. I was thoroughly confused by all of this because his classroom activities are scheduled to go to 5:30pm. Needless to say, when I got home, I wrote to both program directors as I need further clarification and I also need their help at giving my dad assurances when I am NOT there. I also told them NEVER to tell him what time I am picking him up, because he will just fixate on the time and will get anxious if I am not there! Frankly I have no idea why a staff member would tell him what time I am picking him up, because they do not know my schedule. So by the time he greeted me and blew up at me, he worked me up into a silly. 

Peter at the Chief Patient Officer Summit in Boston! Peter worked the company's exhibit booth for several hours and met up with many good contacts. 

A Linked In posting during Peter's talk!

Meanwhile, we went out to dinner tonight. As soon as I parked the car and got out, I was greeted by a preying mantis! I can't tell you how many of these insects we used to have in our townhouse garden in Washington, DC. Mattie found these creatures fascinating. So to me, this was a sign from Mattie today!

Tuesday, July 18, 2023

Tuesday, July 18, 2023 -- Mattie died 720 weeks ago today.

Tonight's picture was taken in July of 2003. Mattie was a year old and that day we took him to Corolla Lighthouse. Back then, they allowed you to walk up to the top and even carry a child in a back pack. That is NO longer possible. But as you can see, Mattie was absolutely fascinated. What you can't tell was it was super hot and humid and there was little to no air flow on that spiral staircase. I am so glad we did it!

Quote of the day: We are all faced with a series of great opportunities brilliantly disguised as impossible situations. ~ Chuck Swindoll

Peter is in Boston this week. While he is there to present at a conference, attend a board meeting, and then reconnect with his parents, my lifetime friend, Karen is visiting with us. This evening we had dinner at the Palm Restaurant. My dad used to LOVE eating veal chops, and they are the only steakhouse in our area that offers such a chop. However, the next major change I have noticed for 2023 is that my dad is having a great deal of trouble chewing tougher meats. I don't know if it is a chewing thing or simply doesn't want to expend the energy! So I find when he is out to eat, he does better with fish and seafood. This is a huge change (on top of so many others) from a man that loved steak, lamb chops, and veal chops!

My mom and dad!

Me and Karen! What I find is whenever I sit still, I get extremely tired. I already know I am exhausted but it is very evident to me that if I don't keep moving, I have a big problem. Which is why sometimes I feel absolutely frenetic. That said, if I am not frenetic, then I know I won't be able to keep up my daily pace. 

Monday, July 17, 2023

Monday, July 17, 2023

Tonight's picture was taken in July of 2004. Mattie was two years old and that was his second time visiting the beach. By this point, Mattie LOVED the sand and he particularly enjoyed playing and building in it! Mattie could spend hours designing his sand castles, and then he and I would walk along the beach to obtain found objects. Those objects were then incorporated into Mattie castles and these found objects became his unique decorations! I will never forget Mattie's beach bag filled with shovels, sand molds, and pails!

Quote of the day: You’ll have bad times, but it’ll always wake you up to the good stuff you weren’t paying attention to. ~ Robin Williams

The highlight of our day was the arrival of Karen. Karen arrived this morning, and her train trip from NYC went smoothly! 

Despite the heat, I had everyone sitting outside on our porch this evening. What I learned this week is that you need house fans outside, circulating air. Flying bugs can't fly well with such air currents from fans. So I am trying out this theory, because I can't continue this ordeal with my dad getting bitten! My mom said she never wanted to go outside again because of bug bites, but I am not having any of this! As you can see I have my dad's arm wrapped up and earlier in the day, I had his hand wrapped up too! All I can say is thank goodness for prednisone. The steroid is making a big difference in his allergic reaction to bug bites. 

Tonight's dinner consisted of marinaded shrimp cooking on the grill, sauteed asparagus, and my corn, basil, and tomato salad.

We have been eating our anniversary cake that we got on Saturday for the last three days, and literally we almost polished it off.

The one thing I can say is having Karen here is a big change in routine for me. I am sitting down more, hearing conversation, and I am not worried about my dad's antics. I can't control them and I know I don't have to hide them from Karen. But what is evident to me is when I slow down and sit, I can feel how tired I am. I sometimes struggle to keep my head up. When that exhausted feeling starts to take over, I immediately jump up and do something, because if I ever stop moving, my household will be in big trouble.  

Sunday, July 16, 2023

Sunday, July 16, 2023

Tonight's picture was taken in July of 2005. Mattie was three years old and we were on a family vacation in the Outer Banks of North Carolina. This was once a very special place for us and I am so glad we shared it with Mattie. 

Quote of the day: Some roses grow through concrete. Remember that. ~ Brandi L. Bates

Though I got up early, I tried to make it a slower day for my parents. Despite the fact that my dad is on steroids, he is wiped out and my mom seems to have constant gas pains and is having trouble eating. So overall it is quite a picture here. In addition, I wrapped my dad's hand and arm up like a mummy so he won't touch the infected areas from mosquito bites. As I remind him, he is his own worst enemy. Since my parents slept later today, I was able to get some Foundation work done, and not feel like I was on a treadmill this morning. Of course that calmer feeling never lasts long in my house, and I have been working around the clock for the rest of the day. 

The one blessing with this house is I have more space to bake and cook. When we were living in the townhouse, I had to be so creative with storing things. Sometimes I was so creative, I couldn't find anything. But things are organized in the house and finding my muffin tins and mixer are super easy. As my lifetime friend, Karen, is coming tomorrow, I made banana chocolate chip muffins for her. 

I also baked homemade brownies. My recipe uses dark chocolate and olive oil (no butter), so we shall see what Karen thinks. 

Despite it being a super hot day out, Peter and I went for a 3.5 mile walk. We are both couped up in the house all day long, that we don't care what kind of weather it is, we need to escape! What saddens me is that Sunny is unable to come with us. He can not manage long walks anymore. I am not sure if that is due to his age or being on chemo, or both. 

On Friday we learned that Sunny's cancer has metastasized to his liver. We have stopped the chemo he is on and we are trying one more type of chemo starting on Monday. The goal of course is to stabilize the cancer. Sunny has been in our lives for six years and ironically it is hard to remember life without him. He is my buddy and has added happiness into our world, which wasn't easy to do.