Saturday, April 1, 2023

Saturday, April 1, 2023

Tonight's picture was taken in March of 2004. Mattie was almost two years old. For the life of me, I can't recall who gave Mattie these collapsible structures. All I remember though was Mattie loved them. That day, he took them out to our deck to play. It is amazing, this deck space wasn't that big, yet I can't tell you all the things we did on it. Which reminds me it is not the space that produces the fun and imagination, it's what is inside of us that counts. Mattie surely illustrated this!

Quote of the day: He who believes is strong; he who doubts is weak. Strong convictions precede great actions. ~ Louisa May Alcott

After my dad's physical therapist left this morning, I did some spring cleaning. Peter emptied our baker's rack in the kitchen and took all the plants we keep on it outside. He transplanted all the plants and put them in new terracotta pots! Peter bought pots in the Mattie Miracle color theme of red, orange, and yellow.

I should have taken a before photo, because every flower pot on the rack was DIFFERENT and nothing went together. I think it will look very nice now with a color theme. But every wrought iron shelf needed cleaning from plant debris and dust. 

My transplanted green friends, waiting to come back inside! Some of these plants I have had for decades. Like my spider plants. In fact, when I moved into my apartment years ago in Boston, a spider plant was left behind. Over the years, I would take a piece of the plant and let it develop roots in water, and then plant it. So these are descendants of that original spider plant. 

After 35 days away from a restaurant we used to visit weekly in Rockville, MD, we returned today. We have been away from the restaurant because both of my parents were ill. It took my mom about twenty days to return back to her health and then after that she did not feel up to dealing with the traffic and long commute to Maryland. 

In a way, it was like a reunion today! Dawn, who is an outstanding server, surprised us with a flowering plant and a bag filled with big chocolate chip cookies for my dad. The managers gave us a big greeting, treated us to dessert, and came over to chat and check in with us throughout the meal. It was very nice to know that they missed seeing us and it made me feel special. I am very grateful to all the servers and managers who take care of us, because my parents have many special needs and requests. The servers also appreciate me and the role I play, and they realize going out to eat IS MY social life. So they don't just serve us, but we share updates with each other about our weeks, our thoughts and feelings, and over time I consider each of them to be a friend.  

Friday, March 31, 2023

Friday, March 31, 2023

Tonight's picture was taken in March of 2004. Mattie was almost two years old and as you can see he and Peter were playing together on his alphabet mat. Mattie loved Peter's big umbrella and together they were imagining it was raining inside! Mattie was pointing at something, which clearly wasn't me. So I am guessing it was Patches, our calico cat, who caught his attention. 

Quote of the day: Hard times don't create heroes. It is during the hard times when the 'hero' within us is revealed. ~ Bob Riley

Yes I am highlighting a rock! You maybe asking yourself.... why???!!! 

Well I found this rock in front of my door, awaiting my arrival home. I knew exactly who it was from! It is from my 6 1/2 year old buddy who lives next door. He and his family recently moved in and for some reason he has taken a liking to me. 

Some days I find flowers, some days I find a pile of branches (as he helps me collect all the fallen sticks and branches in the front yard), and yesterday it was this rock. If you look closely it says.... 'To Family,' with a smiley face. 

I think it is so touching to receive these little gifts, that I am featuring this rock with our spring time flowers in the front hallway. I have found that some children are just born extra sensitive, maybe extra perceptive. Mattie was a bit like this, so naturally I always look for signs from Mattie and perhaps he is being channeled through this little boy next door. Mattie works in mysterious ways, so why not this way too?

I received several Foundation related emails today. One was from a charity group who wishes to partner with us. Our email communications have been going back and forth and I mentioned to her why it is more difficult for me now to take phone calls at this point in my life. I explained my caregiving role with my parents. What I wasn't expecting was a response that expressed deep appreciation, insight, and acknowledgment for the tough role I play. She was able to share her thoughts so candidly because she periodically provides care to her parents, when her sister (the primary caregiver) needs a break. I could tell immediately when reading her words that they were real and genuine, that she understood from personal experience and commented that she doesn't know how I find the time or energy for anything else! She gets a GOLD star, I don't know either but I do know that her email put me in a better mood. 

Thursday, March 30, 2023

Thursday, March 30, 2023

Tonight's picture was taken in March of 2005. Mattie was almost three years old. As I look at this photo, I realize Peter and I were in the midst of painting the walls of our first floor. Frankly I don't even remember doing this as I thought all the painting we did occurred after Mattie died. So much for my memory. As you can see Mattie had his Easter sunglasses on and was beaming! I loved Mattie's smile and incredible energy. It is hard to believe that on April 4, Mattie would have turned 21 years old. 

Quote of the day: When you go through something, you learn to appreciate the little things - the birds, trees, flowers. ~ Grizz Chapman

Recently my lifetime friend, Karen, sent me an article entitled, Whatever the Problem, It’s Probably Solved by Walking. Naturally the title alone caught my attention. Most likely because I think walking is therapeutic. I love the opening two paragraphs of the article, as the author describes walking as something all of us may take for granted. Basically we do it to get from point A to point B. We may do it to get to work, to get chores done, or to sightsee for example. But is walking just that..... a physical activity? Well the quotes below, captured in the article, highlight ALL the reasons I LOVE walking. NONE of which have anything to do with exercising per se. 

• Hippocrates proclaimed that “walking is man’s best medicine.” The good doctor also knew that walking provided more than mere physical benefits when he suggested: “If you are in a bad mood, go for a walk. If you are still in a bad mood, go for another walk.”
• Soren Kierkegaard agreed when he confessed, “I know of no thought so burdensome that one cannot walk away from it.” 
• Charles Dickens was even more direct. “If I could not walk far and fast,” he wrote, “I think I should just explode and perish.”
• Thomas Mann assured us, “Thoughts come clearly while one walks.” 
• J.K. Rowling observed that there is “nothing like a nighttime stroll to give you ideas.” 
• Elizabeth von Arnim concluded that walking “is the perfect way of moving if you want to see into the life of things.”
• Jean-Jacques Rousseau admitted, “There is something about walking that animates and activates my ideas.” 
• Friedrich Nietzsche, “All truly great thoughts are conceived while walking.”
• Rebecca Solnit pointed out that walking “is how the body measures itself against the earth.” 
• John Muir keenly observed, “I only went out for a walk and … going out, I found, was really going in.”
• Henry David Thoreau wrote, “I took a walk in the woods and came out taller than the trees.”

I love to walk for every reason mentioned above. Most of the reasons are emotional, finding one's self, being connected to something bigger than one's self, and the development of new ways of thinking. It is hard to believe that such a simple activity could produce so many beneficial results. I know when I lived in the city, I did much more walking than I do in the suburbs. I was more physically active, and both Sunny and I seemed happier. We bonded over our strides together, meeting new people, and seeing our surroundings through the changing seasons. 

All I know is I miss my walks. Today was a particularly frustrating day. For no exact reason than just about everything. I am tired and yet no matter how I feel, I am expected to do everything and be happy about it. My daily tasks are not glamorous, but I manage through them. However, I think because of what my life has become, some conversations tick me off. My dad keeps bringing up Peter, Peter's achievements and successes, and his talents. I agree, as I am Peter's biggest fan, but it is hard to not want to scream, as I am a person too. I have feelings and I would like to think that I have my own achievements. But to my parents, my professional side is non-existent. Instead, my role is to meet their needs. I remind myself that they aren't the same people I once knew, and for the most part I can rationalize these comments. But then there are times when I am exhausted, HUMAN, and I just want to flip out. 

Wednesday, March 29, 2023

Wednesday, March 29, 2023

Tonight's picture was taken in March of 2005. Mattie was almost three years old and I snapped this photo that day because Mattie and Peter were being goofy together. They were playing with Mattie's plastic food and fruit and as you can see they were trying to scare me with their BUG impressions! Mattie LOVED bugs, most likely because he knew this would get a reaction out of me! He was always successful in that department. 

Quote of the day: When things are bad, we take comfort in the thought that they could always get worse. And when they are, we find hope in the thought that things are so bad they have to get better. ~ Malcolm S. Forbes

As I write this, Peter is back home. When Peter was at Logan Airport in Boston today, this penny literally rolled down the hallway and landed right near him! I told Peter that this was indeed a Mattie sign!

When Mattie was alive, my parents introduced him to the 'penny fairy.' Literally they would drop pennies all over the place and when he found them, he would think they were magically left behind for him by the penny fairy! 

The penny fairy became part of our lexicon and sure enough when Peter sent me this photo, I was transported back in time. I also felt that Mattie was sending Peter a sign that he was with him today on his flight. 

It was a very busy day for me. Frankly I felt so strung out this morning, I did not know how I kept it together. From the moment my feet hit the floor in the morning, it is like a race. I need to get up to get the animals fed, I have to take a shower and get myself dressed, make breakfast, wake my dad, make their bed and clean my dad's bathroom, and then get him showered and dressed and downstairs for breakfast. Once my dad was downstairs this morning, as soon as I started to eat, he had to go to the bathroom. So I never ate breakfast. I then had to take my dad to his memory care center. I drove him, came back and herded my mom to get her coat on and into the car, so that I could take her to physical therapy. 

Of course while trying to leave the house, I was also balancing laundry, dishes, and the cat vomiting all over the staircase. I was literally screaming from the stress of juggling so much. Naturally once in the car, we ran into terrible traffic. Which meant we were going to be late to therapy by at least 20 minutes. So I called the clinic to alert the therapist. Truly all day I have felt like I am on a never ending treadmill. 

For this past week while Peter has been away, all I have heard from my dad is.... when is Peter coming home? My dad is very fixated on Peter, most times I deal with it, but the non-stop questioning about Peter has gotten to me. So my joke now with my dad is that.......... 'maybe I should go away for a week and leave you with Peter. Then perhaps you will have some idea for all I do each day.'

The average sane person would have a hard time balancing what I do each day for two people. I wouldn't wish it on Peter, and yet, you would think my dad would be more focused on me, the person who provides all his care. NOPE. Of course when my dad was in his right mind, he always credited Peter for the Foundation being successful. In his mind it was Peter who provided the leadership and raised the funds. I am not sure if it is a generational thing or what, but as you can imagine that feedback never sat well with me. Now even with dementia, my dad's focus remains on Peter, but you would think by now I would be used to this. 

I have found with dementia, there are peaks and valleys to its trajectory. Right now we are plummeting into another valley, as I see my dad is more exhausted, can't do his 15 minute daily walk routine, seems zoned out and tracks no conversation, prefers to sleep, his appetite has decreased, and his night time routine is over the top. Last night, the nanny camera found him sitting on the toilet for an hour and thirty minutes. I can't possibly watch my dad 24 hours a day, but the camera is giving me further insight and so far it confirms that he hasn't wandered beyond the bathroom at night. 

Tuesday, March 28, 2023

Tuesday, March 28, 2023 -- Mattie died 704 weeks ago today. 

Tonight's picture was taken in March of 2005. Mattie was almost three years old and that day he was invited over to his Aunt and Uncle's home to participate in an Easter Egg Hunt. Behind Mattie is his cousin, Will. It is hard to believe that Will is graduating from college this year, and yet in my mind Mattie is forever 7.

Quote of the day: We do not have to become heroes overnight. Just a step at a time, meeting each thing that comes up, seeing it is not as dreadful as it appeared, discovering we have the strength to stare it down. ~ Eleanor Roosevelt

It was another fun day on the Farm. To add to the complexity of the day, I had a conference call at 11am. If people could see me minutes before a call, they may wonder how on earth I am pulling all of this off! Or look composed on a call! I wonder myself some days. I am so tired, it is hard to get out of bed in the morning. But I do it and I am thankful that Sunny has been compliant with eating and taking his pills while Peter has been gone. As I get up an extra 30 minutes early to manage Sunny and Indie's needs when it is just me at home. 

This afternoon, I took my parents out to lunch. It is our main meal of the day. When Peter is gone, we go out every day, otherwise, we are couped up at home all day long and it helps to see other people and be out and about. Otherwise, the isolation is intense. Eating with my dad is neither pleasant at home or out in a restaurant. No matter how early I take him out, he is a zombie at the table and looks like he is going to fall asleep! Yet he wants to go out to eat. In fact, that is the first question he asks me when I wake him up in the morning..... are we going out to eat? You would think I am a horrible cook given his desire to always go out. 

While at the restaurant, there was an adult daughter sitting with her parents right next to us. I couldn't help but hear her conversation. Mainly because she was shouting. She went off on a diatribe about how she doesn't believe in God, actually hates the notion of God, and faith is only a feeling and not based on science. Her parents had no response, as clearly the father was embarrassed by her screaming. Given all I have faced so far in life, I can absolutely appreciate why someone would question God, or even doubt his existence. In fact, I think God understands human frailty and our need to question and understand things we can't see and measure. Having a child diagnosed with cancer and then die, has caused me to question God, his ways, and his intentions. But being a cradle Catholic (someone who has grown up and been Catholic all one's life), I do not doubt God's existence. Cancer has not changed that reality for me. 

That said, given my personal experiences with trauma and loss, when I hear comments like I heard today from this woman, my reaction was..... there is a reason she feels this way. I don't judge her in any way, as spirituality is a personal component of one's life. But sure enough, as she was getting up from the table, I could then immediately see... she is a caregiver to TWO older adults. Her dad had a physical disability and her mother literally acted just like my father. I have no idea whether she believed in God ever, but I do think caring for older adults all day long, especially those with dementia, can make you absolutely unhappy, question life, its purpose, meaning, and in the process you lose your identity and hope for the future. 

Monday, March 27, 2023

Monday, March 27, 2023

Tonight's picture was taken in March of 2005. Mattie was almost three years old and that day we took him to Butler's Orchard in Maryland, to attend their Bunnyland spring fair. As you can see, Mattie was having a ball. There were all sorts of hands on activities for kids, as well as an Easter Egg hunt. Mattie gravitated to the John Deere tractor, which was why Peter created Mattie a step stool for the bathroom that looked just like the tractor. 

Quote of the day: No matter how bleak or menacing a situation may appear, it does not entirely own us. It can't take away our freedom to respond, our power to take action. ~ Ryder Carroll

As you can imagine I am very cognizant about brain health and dementia. When I brought my dad in for a dental cleaning three months ago, they found that he has significant gum disease. This was surprising to me given the fact that he cared for his teeth all his life, went for cleanings every six months, and had good oral hygiene. Or at least he did before 2020. When the hygienist handed him a tooth brush and asked him to demonstrate how he brushes his teeth, it became very apparent to me and her..... that my dad no longer knows how to brush his teeth. So she has asked me to take this over. I confess, I get an F in that department, because I am doing everything else for him. But today I visited the dentist, and I am now making a commitment to take over his dental care.

The point to all of this is back at the dental visit with my dad, I learned of a salvia test to detect bacteria in your mouth that has been linked to many kinds of diseases, one being Alzheimer's. I think if my parents did not have dementia, I probably would NOT be focused on this testing, but since they do, I feel I want to be as proactive as possible. After all if there is a pathogen in my mouth, that could be treated to help with the prevention of systemic disease, then I feel it is important for me to learn more and be proactive.

Check out this interesting one minute video:

Evidence seems to show that five high-risk oral pathogens are causative drivers of inflammation and disease. Oral bacteria make their way into your bloodstream and place us at risk for heart attacks, stroke, Alzheimer’s, cancer and diabetes.  Saliva pathogen testing determines the cause and severity of an infection, provides a medical diagnosis, validates treatment, and identifies early stages of infection. 

The testing was super simple and I should have results in two weeks. Again, I am not saying this is the be all or end all, but it provides me with more data about my own potential situation. 

It is ironic that a trip to the dentist or the doctor's office is like a SPA day for me. I dropped my dad off at the memory care center, and I asked my mom to stay home. Though she wanted to come with me (as she has a FEAR OF MISSING OUT syndrome), it is just too stressful herding her out of the house in the morning. So after I dropped my dad off, I had time by myself in the car, which felt like incredible freedom. I had freedom for three hours where I did not have to worry about either parent. My hygienist understands what I am balancing and she too calls it my 'spa' appointment. 

Of course as soon as I got back home after my appointment, I had laundry, dishes, emails, the animals to care for, managing my mom, and caring for my dad. My mom got a bill in the mail today, and this sent her over the edge. She had me going crazy for 90 minutes over this bill, and I had to call the health insurer and figure out the discrepancies. While talking to the health insurer, my mom was hovering over me. I finally lost it and told her to sit down. I have no idea what the health insurer thought about my comment to my mom, but frankly I just didn't care at that point in time. Any case, after solving the bill saga, I felt like I went three rounds and LOST! 

Sunday, March 26, 2023

Sunday, March 26, 2023

Tonight's picture was taken in March of 2006. Mattie was almost four years old. This was a typical level of activity in our dining and living rooms. Trains, tracks, toy cars, and of course Legos. Peter and Mattie both love to build and create and so Peter did not have a big learning curve when Mattie was born. Whereas, I had to learn the art of Legos, trains, cars, and of course exploring the great outdoors. However, to this day, I still prefer being outdoors versus in, and I attribute that to Mattie. 

Quote of the day: Anyone can give up; it is the easiest thing in the world to do. But to hold it together when everyone would expect you to fall apart, now that is true strength. ~ Chris Bradford

This is my boy outside this morning, enjoying a sunny day on the patio! Age and cancer have changed Sunny's level of activity. But his love, spirit, and devotion remain the SAME! 

Peter is in Boston, and though he had a cold and rainy day, we had close to 70 degrees and beautiful sunshine. I sent Peter a photo of his hyacinths growing beautifully!

Our pansies made it through the winter!

Signs of spring! 

Here's the highlight of my day. After I got home from taking my parents to brunch, I was getting my parents inside from the garage and the front doorbell rang. I told my mom to help my dad so I could see who it was at the door.

It turns out it was our 6 1/2 year old neighbor next door. He is a very sociable fellow. He came to me soaking wet, as he had his swim suit on and had just run through his sprinklers.  He handed me a daffodil and clearly wanted to chat. I brought him out a towel and Sunny and I must have stayed with him for an hour. I know at that age, kids like tasks and to do something. So I literally got my greens container out and he and I walked around the front yard picking up branches and sticks that fell off our river birch tree. While picking up sticks we talked about all sorts of things. We learned we both suffer from pollen allergies, we both have birthdays in July, and we both love Sunny. At that age, kids will talk about everything and all I kept saying to myself is..... Mattie taught me well!