Saturday, May 27, 2023

Saturday, May 27, 2023

Tonight's picture was taken in May of 2006. It was a day I will never forget. Mattie and Peter went bicycle shopping together. They came home with this adorable bike, training wheels and a helmet. When I returned home, I got to see Mattie bicycle riding around for the first time. He loved it and our outdoor area in the city provided the perfect, safe, and secure spot to learn. In this enclosed area Mattie learned to walk, run, bike, fly a kite, and of course drive Speedy Red (his ride on vehicle).  Every time I am in the city and pass our old home, I look up at this enclosed area. It holds so many memories for me, and I am quite certain Mattie spirit lives on in this space. 

Quote of the day: Patience serves as a protection against wrongs as clothes do against cold. For if you put on more clothes as the cold increases, it will have no power to hurt you. So in like manner you must grow in patience when you meet with great wrongs, and they will be powerless to vex your mind. ~ Leonardo da Vinci

Peter sent me this photo this morning! He started his day with a walk/run in the woods behind his parent's house. Since January, Peter has been focusing on his nutrition and has developed an exercise routine. He has lost around 20 pounds so far. I admire his discipline!

I have walked these woods with Peter since we were in college together. Then of course we introduced the woods to Mattie and then to Sunny! 

Peter drove his parents to Maine for the weekend, as our youngest nephew is graduating from Bates College. Peter sent me a photo of the family having lunch together in Maine. 

On the left (back to front): Barbara (Peter's mom), Lisa (Peter's sister in law), Sydney (our niece), and Chris (Peter's brother)

On the right (back to front): Peter, Don (Peter's dad), Will (our nephew) and Nat (our nephew)








Given it is memorial day weekend, I wanted to try to do something special with my parents. Honestly their days of touring around, visiting things (even a museum) are OVER! So the outing is always centered around food. I decided to take them to Chez Francois (which is about 30 minutes away from our home). It is a restaurant I have loved for years. Yes it is still special, but NOTHING stays the same. Everything from the service to ambiance have changed and not for the better. 

When I checked in at the front desk, the man told me that he couldn't seat us in the room I requested! Because I was too late! That if I wanted better seats, I needed to get there earlier! Truly..... does he NOT see the show I am traveling with!? I wasn't just asking for a particular room for the fun of it, I was asking because this room is close to the first floor restroom (which is important for my dad and is irritable bowel syndrome). I even noted in my reservation that my dad has a disability and I would appreciate their consideration. Forget it! He wanted to sit us in a dark part of the restaurant, and I said absolutely NOT! So we landed up outside on the terrace. Normally my dad doesn't like eating outside, but since it was a glorious day, I pushed my parents out of their comfort zone. 

In the restaurant's heyday, this is what the terrace used to look like. It was stunning and so tranquil. Tree and flower lined and there was even a fountain in the middle of the space. The terrace looks very different now, and in my opinion it has lost its charm. 

I realize the restaurant, like all restaurants, had to make rapid changes when COVID hit. So the terrace was transformed, with trees and the fountain taken down and a tent set up. I am sure this space is now used for private events, and it gives the restaurant a chance to bring in extra income. But NOT all change is for the better. 

In addition to a change in atmosphere, the quality of the service is beyond noticeable. In the past, servers had incredible skills, loved what they were doing, and were eager to make your meal a memorable one! Now that isn't the case at all. To me it is a sad commentary. If you notice the chairs, you will probably say.... they look uncomfortable. Not only do they look uncomfortable they are! My mom complained throughout the entire meal. I was jumping up and down like a jack rabbit throughout the meal adjusting her chair, and putting blankets all over the chair to provide cushioning. 

My dad did eat today, unlike the last two days. My strategy this morning was to give him only a cut up apple for breakfast. By the time he got to lunch, he was starving. Especially after an hour work out with his physical therapist. Meanwhile my mom injured her back somehow, and between her moaning in pain and my dad's stupefied state, I would say the whole meal was depressing. It takes a lot of inner patience, perspective, and strength to manage what I see and experience daily. 

The restaurant gave us an amuse bouche to start the meal.... a lentil soup. This may not sound good, but it was delicious, and I am sure it had sherry in it!

Honestly I was in such an edgy mood managing both of my parent's needs, that I did not photo the rest of the courses! My mom and I shared a raspberry souffle for dessert. What I love however, is this adorable tea pot. When the server delivered it, he wanted to give me a lecture on how to open the lid of the teapot. He was rather officious about it. So in the same manner that I dealt with the fellow at the front desk, I snapped right back at this server. I told him I love teapots and actually collect them, so I did not need a tutorial in teapots! 

After lunch was over, my dad was desperate to go to the bathroom. So I escorted and helped him and then put him in the car. Then I went back to the patio to help my mom up. I am seeing more and more that my mom is having trouble moving independently and for the most part when we are out of the house, she wants to hold my hand. This becomes a juggling act when I also have my dad in tow. Before my mom and I left the terrace, she snapped this photo of me. 

Friday, May 26, 2023

Friday, May 26, 2023

Tonight's picture was taken in May of 2006. Mattie was four years old! I remember taking this photo as if it were yesterday. Mattie took the photo of himself as a toddler off the refrigerator. I suggested he come back over to the same coffee table to check out how much he grew in just a few years. Mattie's big smile shows his pride with this accomplishment. He went from the table being waist height to almost knee height. I absolutely LOVE that smile. 

Quote of the day: There is hope, even when your brain tells you there isn’t. ~ John Green

It was another red letter day here! My morning started with my dad pooping in the shower. However, this time I wasn't far from the bathroom and I could see what he was about to do! I am so thankful I saved all the big hospital wash basins. They are a life saver! Some days I stop and think to myself.... my life has evolved into recording, cleaning, and assessing poop! My parents are fortunate that very little fazes me and that I can compartmentalize one toxic offense and not let it (for the most part) impact how I operate with them for the rest of the day. 

After I dropped my dad off at the memory care center this morning, I ran back home, picked my mom up and drove her for physical therapy. My mom has been having muscle spasms in her back all day today. So she is in pain and overall not happy about our existence. 

Once her session was over, our favorite pianist was playing in the hospital atrium. So instead of bringing my mom home, I suggested we sit, have tea and listen to Aija! Aija has gotten to know us and she knows my mom loves Puccini, and plays several pieces just for my mom. I swear listening to Aija in the hospital atrium is like attending a concert! It is a moment of peace and joy. Of course with caregiving, these moments are few and far between. 

Later this afternoon, I picked my dad up and we all went for a late lunch. Yesterday my dad didn't eat well, and we figured this was a one off. But today he took like three bites of food and then said he was full. He pushed his plate away from him, gets agitated with us, and looks at us absolutely stupefied. Watching how my dad eats and behaves truly upsets my mom, which did not help how she coped with her muscle spasms. She started keeling over at the restaurant table. Frankly I wasn't sure who to manage first. What is abundantly clear to me is that my dad has no insight into anything going on, how his behavior impacts us, nor really seems to care. So in essence this is a shell of the man I once knew, which is beyond depressing. Yet I have to absorb all these issues, everyone's emotions, as well as manage intensive caregiving needs for both of my parents. Some days I think this is another test to my endurance, and frankly I thought managing Mattie's care and death were more than enough. 

Thursday, May 25, 2023

Thursday, May 25, 2023

Tonight's picture was taken in May of 2006. I went out that day for a taste of DC tour with Mattie's preschool teacher. Ironically she was Mattie's teacher, but we became fast friends! Mattie truly grew and blossomed in her classroom, and given the nightmare of a time we had in his previous preschool, she was determined that this would be a positive experience for us. It was such a positive experience that even today the moms I got connected with back then are still my friends today. So while I was out and about, Peter and Mattie went to purchase a bicycle, training wheels and a helmet. Mattie was very excited by this new adventure! 

Quote of the day: Dementia is not a specific disease. It's an umbrella term that describes a wide range of symptoms. These symptoms affect people's ability to perform everyday activities on their own. Common symptoms of dementia include: A decline in memory, Changes in thinking skills, Poor judgment and reasoning skills, Decreased focus and attention, Changes in language, and Changes in behavior. ~ Jonathan Graff-Radford, M.D.

Peter is now in Boston for a week. He is visiting his parents and also attending our nephew's graduation from Bates College in Maine on Sunday. There are many things that I just can't participate in and honestly this can be frustrating to me. I can't plan anything or have a break (and haven't had a day off since November of 2021). Because each day my life is filled with tasks, demands, and needs. Caring for one parent is hard enough, but I have two that need different levels of support at the same time. 

I took my dad to his podiatry appointment this morning. He visits this doctor every 9 weeks. Today we learned that the doctor is retiring after practicing 40 years. I was actually surprised because the doctor did not look old enough to retire, from my perspective. So this makes the second doctor caring for my dad who is retiring. I am happy for these doctors, but certainly any change in my opinion is difficult because it is like starting all over again from the beginning with my dad's long medical history! Which to me is exhausting. 

I would have to say that today was NOT my finest hour. After the appointment, I ran chores with my parents in the car. This to me is stressful because I can't be on my own time line. I only did these chores because they were Foundation related, otherwise, I wouldn't be doing them. Once chores were done, I took my parents out to lunch. My dad is the one who wants to eat out all the time. In fact when he eats at home, he is disappointed! I used to like to cook and consider myself a foodie, but my dad takes my appetite away on many levels. 

Any case, at the restaurant, we ordered several things for my dad at eat. He ate some, but then refused to eat anymore because he kept saying he was stuffed. I only gave him fruit for breakfast, because I wanted him to eat lunch. But it was very depressing and of course while my mom and I are eating, my dad is staring at us, waiting for us to quickly finish. So I told my dad today that he has to listen to me when I select the foods he should be eating from the menu. But truly it is like rationalizing with a toddler. 

What sends me over the edge is my dad's preoccupation with Peter. He always wants to know where Peter is, what Peter is doing, and then constantly asks whether he has to refer to Peter as "his excellency" or "curtesy" because Peter got a new job. My dad is very tuned into Peter and views him as someone who is bright, gifted, and talented. Of course I don't disagree, but I am SICK of hearing non-stop about Peter. From my dad's perspective my role is to serve, I am the caregiver and I don't really have any other dimension or need. So today when this crazy conversation came up today, I snapped. 

My mom encouraged my dad to eat, but he wasn't having any of it. He finally said, "who is luckier than me?" He may have been trying to be humorous but I wasn't laughing and I don't find my day to day existence funny. I truly believe that the average adult child would have institutionalized my dad about a month into providing care for him. It's not any one particular issue or symptom, but the whole magnitude of issues together that I face on any given day that make caregiving for parents with dementia very challenging and emotionally exhausting. 

Wednesday, May 24, 2023

Wednesday, May 24, 2023

Tonight's picture was taken in May of 2007. This was a typical occurrence in our home in the spring! Mattie would bring home tent moth caterpillars, we would feed them, clean their jars daily, and then when they emerged from their cocoons, we would have a moth releasing event on our deck! Honestly when Mattie first brought home caterpillars in a cup, I wasn't a happy camper. However, I could see his interest in the metamorphosis process, so I went with it! After the first year of Mattie doing this, I came to expect and like the spring event that we did together. As I always say.... Mattie was my greatest teacher in life. 

Quote of the day: The person who is truly effective has the humility and reverence to recognize his own perceptual limitations and to appreciate the rich resources available through interaction with the hearts and minds of other human beings. ~ Stephen Covey

It was a typical day of juggling multiple things. This morning, while getting my dad ready, we had Sunny's groomer here and our chandeliers were also being cleaned. I found Virginia, who is an expert at chandelier maintenance and cleaning, when we first moved into the house. I had Virginia come back today to take care of my mom's chandeliers, which have been sitting in crates, and in storage, for 4-5 years. Needless to say that needed cleaning. I remember as a child, helping my grandmother clean these chandeliers. So I can do it, but given the three ring circus that I manage, there is just NO WAY. 

I couldn't stick around for the process today, because I had to take both of my parents to appointments. We first went to the hospital so my mom could have her physical therapy session. I brought with me snacks, so after the therapy session we could sit in the hospital atrium and eat before running to the next appointment which was in another location. 

While in the hospital atrium, our favorite pianist was playing. Aija is so gifted that I literally can be on a different floor of the hospital, however, even without looking, I can tell it is her playing versus another pianist. She puts her heart and soul into everything she plays and transforms you mentally to a better place. So to me, sitting and listening to her even for a short period of time, is the highlight of my day. 

After this one hour pause, I then helped both of my parents to the bathroom, and then got them into the car, to head to my dad's urology appointment. When my dad was rushed to the hospital in May of 2020, he had a large kidney stone blocking his ureter. Unfortunately because he isn't cognitively intact, he never alerted my mom to the symptoms he had been having and of course my mom wasn't paying attention to the signs. So by the time my dad was hospitalized he had a serious medical condition..... urinary sepsis. I am quite certain this condition and hospitalization both triggered his rapid decline in his dementia. I should note that my dad's current doctors have diagnosed him with Alzheimer's Disease, which is NO surprise to me. 

In May of 2020, my dad had surgery to remove the kidney stone blocking his ureter. However, the doctor left a 12mm stone in his left kidney. I never understood why lithotripsy wasn't performed to remove that stone. Afterall, my dad was in surgery and already was under general anesthesia. Needless to say, once my dad left California, his kidney stone hadn't been on my mind. Particularly because he is asymptomatic. 

However, since the CT scan he took last week picked up on the stone, his pulmonologist felt we needed to consult with this urologist today. I liked today's urologist a lot. He had access to my dad's records in California and could chart the timeline of my dad's surgery and where we are today. In a nutshell, this large stone is in a area of the kidney that will not block or cause issues, well until it moves of course. But it is too large to be passed. So if it causes problems, surgery will be required. If my dad was in his 70's, then surgery would be recommended, but given that he is 88 years old, the doctor feels that doing nothing now is a wise course. I naturally know all the signs and symptoms to look for if a kidney stone is problematic, given that I too have had 8 kidney stones so far in my lifetime (with the hope of never having anymore!).

I was impressed with this doctor because he wasn't only competent and thorough, but he was sensitive to my dad's health and to his overall quality of life. I think every time my dad gets sedated or spends time in a hospital, the more disoriented he gets and frankly I am not signing him up for a guaranteed cognitive decline if it isn't absolutely necessary!

Tuesday, May 23, 2023

Tuesday, May 23, 2023 -- Mattie died 712 weeks ago today.

Tonight's picture was taken in May of 2007. This was Mattie's first day of summer camp at his preschool. Given that Mattie went the previous summer, he was less anxious about what to expect and by that point, he knew he was headed to have a fun and engaging half day at camp. Mattie's school was one of a kind and to this day, I am close to many of the moms I had the honor to meet there. 

Quote of the day: How many times have we attempted the impossible and tried to change other people. Often this ends up being an exercise of frustration as attempting to change others truly is a waste of time! ~ Catherine Pulsifer

This morning, I woke up to photos Peter sent me from our backyard! I know this sounds bizarre, but he knows I rarely have a moment to myself, much less spend any time outside. Both of my parents have issues with being outside. It is either too hot, too cold, or they are afraid to get bitten by a mosquito. 

Peter knows how much I LOVE sunflowers, so he planted many of them for me! Our first sunflower of the season! 

This beauty is a spaghetti squash blossom!

Peter had an appointment today at Mattie's hospital, as he needs surgery in July. Though I wanted to go with him to meet the surgeon myself, I couldn't leave my circus show. In front of the main entrance is a memorial brick for Mattie (right by that blue sign). This brick was a gift to us from the philanthropy department. 

Where the memorial tile is located!

A close up of the tile! I used to visit this tile every September 8th, the anniversary of Mattie's death. 

Tonight's quote reminds me that I have to stop trying to rationalize with my mom. The only one it frustrates is me. I was telling her about Peter's upcoming surgery and suggested that since he needs general anesthesia, that we pick a day for surgery when my dad isn't at the memory care center. So that he would remain home with my mom, while I am at the hospital with Peter. I suggested this because I want my focus to be on Peter, and I do not want to feel pressure or concern about having to pick my dad up at a certain time. Not only can't my mom comprehend what I am suggesting, but she gets mad that I am inconveniencing her. Apparently my role now is to meet their every need, and if I should attempt to schedule something that doesn't include her, that just isn't allowed. Which is why I have no life now. Peter needing my support is important to me and therefore I would have hoped would be important to my mom too. Forget it. 

Monday, May 22, 2023

Monday, May 22, 2023

Tonight's picture was taken in May of 2009. We were all in attendance at the Mattie March. T-shirts were made for the event, and the image on it was priceless. A graphic artist worked it up and when I saw it, I suggested that Mattie's face be added onto it. The shirt featured kids marching together, holding up supportive signs. To me this shirt will always be a classic. In this particular photo you will see that Mattie was surrounded by his hospital friends. His buddy Brandon was holding a cup filled with tent moth caterpillars that Mattie found that day and one caterpillar was even crawling on Mattie's arm! At a very busy event, with a ton going on, I think this was a very tender moment between friends captured on camera. 

Quote of the day: Constant kindness can accomplish much. As the sun makes ice melt, kindness causes misunderstanding, mistrust, and hostility to evaporate. ~  Albert Schweitzer

This morning I had the opportunity to announce the winners of the step count competition from our Walk event on Sunday. Many of our winners are loyal attendees of our Walks and they have even won awards in the past. Two of our winners are from outside our National Capital Area..... Florida and Wisconsin to be exact. Our first place winners receive an $100 VISA gift card, our second place winners receive a $75 VISA gift card, and our third place winners receive a $50 VISA gift card. 

Adult Winners:

1st: Jacob Gibson: 28,676 steps

2nd: Gustavo Bonany: 28,161 steps

3rd: Chris Dean: 21,426 steps

Kids/Teens Winners:

1st: Erich Bonany: 22,144 steps

2nd: Daniel Bonany: 19,195 steps

3rd: Jeremy Young: 13,044 steps

The other exciting news in our household is that a press release came out about Peter today and he was added to the company's website. Peter is a humble fellow, but given all that he has endured the last few years, finding a job that is the right fit for his skills and talents is a big deal in my book. Congrats Peter!!!

Press Release 

The Team

Sunday, May 21, 2023

Sunday, May 21, 2023

Tonight's picture was taken in May of 2009. This was the Mattie March, an event that Team Mattie planned and hosted to honor Mattie. Mattie was surrounded that day by friends, family, classmates, and his entire health care team. When I tell you there had to be 500 or more people in attendance, I am not kidding. It was a spectacular day filled with a whole program of events. We had the opportunity to address the crowd and give out gifts and awards to all of Mattie's nurses and therapists. Mattie even got to perform a magic show with his teacher at the event, participate in creative activities, and most importantly be celebrated and have a chance to be a kid. This event will forever be in my memory and every Foundation Walk day (as our Walks were launched using the Mattie March as our model), I remember this moment in time. 

Quote of the day: Attention is the rarest and purest form of generosity. ~  Simone Weil

Today was Mattie Miracle's 14th annual walk! I am honored to say that we raised $130,024! This was our most successful fundraiser ever! We are very grateful to our sponsors and supporters for making this happen!

It was a whirlwind of a day, and I can truly say I am exhausted on all levels. You would think a virtual event would be easier to host than a live event. It certainly is in some ways, but instead of moving around, I am glued to a computer all day long. Which could be why I now have muscle spasms in my back. My back pain started a few days ago, because I have been spending more time in between caregiving, trying to correspond to donors and sponsors on the computer. Which to me is crucial for the health and well-being of the Foundation. 

I will highlight aspects of the virtual event with photos, over the next couple of days. But tonight I leave you with a photo that Peter took of me with my parents. I am saddened to visually see the decline in my dad. I certainly am aware of it, as I manage his care daily. But my dad's cognitive decline has been rapid during this year. 

This was Walk 2022's photo of us. Even though my dad was under a blanket, he looked more alert.