Saturday, June 11, 2022

Saturday, June 11, 2022

Tonight's picture was taken in June of 2009, shortly after Mattie's sternotomy, a surgery to remove tumors from his lungs. The healthcare team wanted Mattie to do breathing exercises  to help clear his lungs, and lower the risk of pneumonia. However, by this point in time, everyone knew Mattie wasn't going to work with a respiratory therapist. So his nurses came up with this clever game. It was a cup boat race between Sponge Bob and Patrick (the cartoon characters) in a wash basin. Mattie was hiding under a blanket, but was competing against Peter. Both of them were blowing on straws to make their cup boat get to the finish line. As you can see Sponge Bob was well in the lead. Mattie loved the spirit of competition and if one of us was playing along, he then was happy to comply with the exercise. 

Quote of the day: Courage is not having the strength to go on; it is going on when you don’t have the strength. ~ Theodore Roosevelt

I agree with Roosevelt's quote 100%. Today I felt like I hit an all time low in my energy level. I am so tired of getting up early each day and doing chore after chore. There hasn't been one break since November of 2021. It is hard on the body, mind, and spirit. 

After completing my usual daily routine, I took my parent's to our local farmer's market. It is literally a few blocks from us. It is small, but excellent. We love some of the vendors though I have gone to bigger markets, this one really meets my needs. I wanted to get my dad out of the car to walk, as he once LOVED to food shop. But he did not want to walk and stayed in the car. So I got what I needed and came back home to unpack and fold laundry. 

What is this? Try a smoked pig's ear. One of the tents at the market was selling these and I bought it in hopes of encouraging Sunny to eat. The irony is instead it is like "finding Waldo!" Sunny carries this treat from room to room, but has yet to take a bite!

I took my parents out for lunch today and we saw our favorite server, Dawn. Dawn has an outstanding rapport with my dad. It took me about 40 minutes to drive to the restaurant, which for me is exhausting, given how I am feeling. As soon as I pulled up to the restaurant, my dad said he had to go to the bathroom and quickly. I literally parked the car by the front door of the restaurant, put my hazard lights on, locked the car and took him directly to the bathroom. Today was one of those days, as he has diarrhea. I got him there in time (this time!). 

When we got to the table finally, my dad was joking with Dawn and he said to her because he treats her like family, he thinks the reason he was so humorous and lively today was because he just had a huge bowel movement. Can you believe this conversation? Fortunately Dawn did not skip and beat but she did say in all her years working, this was a first for her!!! Stick with us is what I told her. 

I thought since my dad went to the bathroom right before we ate, that I was going to have a peaceful meal! Forget it. Right after our entrees, he got that look! Which meant we had to go back to the bathroom, this time, apparently we weren't moving quickly enough. So it was all over him and I had a big clean up job to do in the bathroom. Fortunately I go no where without a large tote bag filled with things and thankfully have a strong stomach. As not everyone could handle this sight and smell right after eating. 

I have to admit after all of this (on top of months like this) that I got in the car and was very very tired. I got us home safely, but I am wiped out. So I am calling it quits for today and headed directly for the couch. 

Friday, June 10, 2022

Friday, June 10, 2022

Tonight's picture was taken in June of 2009. Mattie was visiting our friend Tanja, who introduced him to the family's paraquet. Mattie was intrigued and at the same time frightened of Ginny the bird. Ginny made a high pitched noise, flew freely, and pecked...all of which frightened Mattie. 

Quote of the day: Doctors diagnose, nurses heal, and caregivers make sense of it all. ~ Brett H. Lewis

I woke up at 6am today and have felt like I have been on a treadmill every since. It is 11pm, and I finally have a moment to myself. I had to get up early to feed Indie, give Sunny his pre-meds and chemotherapy (by the way, Sunny takes about 11 pills each day!), get showered and dressed, make breakfast and a snack for my mom and I to take to Georgetown, and then wake my dad up, get him washed, dressed, downstairs for breakfast, and get us all in the car by 9:20am. Not to mention start a load of laundry!

I dropped my dad off at his memory care center and then headed into the city to take my mom to the salon for her hair and nails. Because I found leaving my mom at the salon alone wasn't a good idea, I now schedule my own manicure and pedicure while she is there in order to keep track of her. The salon is near where I used to live in Georgetown. Each time I return to the city, I am saddened by its state of affairs. Unfortunately the encampments and graffiti have NOT been addressed, despite all my written correspondence with the city. 

What I realize is that the city is much easier for an abled body person. Today I parked the car and my mom and I walked about four blocks to the salon. Georgetown side walks are bricked and uneven. My mom had a hard time walking and I held her arm the entire way. 

I have known my manicurist since 2009, shortly after Mattie died. I was introduced to her through my hairstylist, as they are sisters. Back then going to get my nails done forced me out of our home and to interact with the world. Needless to say, I have gotten to know my manicurist VERY well over all these years. I came to her today with a major problem. The podiatrist cut away a good portion of my big toe nails this week. He wants to analyze them to see if my issue is a nail disease or trauma. The nail issue is so significant that I can't put color on my nails, as you would see more of my flesh than my nails. In any case, we found the perfect color today that helps camouflage the issue. Sounds all so trivial, but these little things can make me feel better, when in all reality I am drowning in an endless sea of problems. 

After the salon, I drove back to our home, dropped my mom off and let Sunny outside. Then drove to pick my dad up from the memory center. I took him home, and then turned around quickly to take them out for an early dinner. We went to a restaurant in Rockville, MD. It took me 90 minutes to get there because of horrific traffic. Why did I go there? Because Dawn works there. We met Dawn at the Clyde's of Reston (which closed its doors at the end of May). We get along splendidly with Dawn and she is great with my dad! So she is worth the trip, but after a long day, the ride was a killer. 

I snapped a photo of my dad eating a big piece of blueberry lemon bread. This bread was baked by my friend! Yes I travel to a restaurant with a big tote bag. The bag is filled with toiletry items for my dad, garbage bags, tissues, a bottle of ketchup, a bottle of vinegar, and a dessert for my dad. I feel certifiable! 

Of course no dinner is ever in peace. My dad has to always go to the bathroom mid-meal. I take him right into the ladies room, and I go into the large stall with him, because he needs assistance and guidance. In addition, he eats so fast, that he lands up having swallowing issues, hiccups, and don't ask me but when his stomach is full, his nose drips like a water faucet. 

The car trip home from the restaurant was quick, thankfully. I got home and had to give Sunny his evening pills. I then baked Sunny pork chops, because I am trying to entice him to eat. The chemo has greatly impacted his appetite. I folded laundry, unloaded the dishwasher, helped my mom with bills, and as you can see Indie is acting out because she wants my attention. By the end of the day, I am simply frazzled, and yet I have to mentally prepare because tomorrow the freneticism starts all over again. 

Thursday, June 9, 2022

Thursday, June 9, 2022

Tonight's picture was taken in June of 2009. Mattie was home between hospital treatments and playing in our living room. Our living room was filled to the brim with toys, gifts, and hospital equipment. Honestly at the time it made no difference as long as Mattie was stable, with no pain, and engaged. That feeling of living in the true present will never be forgotten. Nothing really mattered, other than what was going on at that particular moment in time. It is hard to describe, but all I can say is it is a real phenomenon when living with a day to day crisis. 

Quote of the day: A good laugh and a long sleep are the two best cures for anything. ~ Irish proverb

I did not sleep well last night. In fact I was up from 2-4am. I was startled awake by a thunder and lightning storm. I knew that Sunny would be besides himself. So I jumped out of bed and ran downstairs. I tried putting Sunny in our pantry closet, then the powder room, and finally the basement. Nothing worked. He was anxious, pacing, and panting. So despite my best efforts, he landed up walking up our stairs and spent the rest of the night in my shower. The reason I don't want Sunny upstairs is because he will not walk down the stairs himself. He can get up but NOT down. Someone has to carry him. Someone being Peter! Sunny is 60 pounds and I can't manage him on my own. 

This morning felt like it was a three ring circus. Peter was packing and leaving for a trip to California, our cleaning women were here, I was balancing my dad, and my two friends were coming for a visit. They were coming so I could go for a walk and my mom could have dialogue with someone other than me! It was a very thoughtful and positive visit. But I must admit because I never know how things will go with my parents, I get stressed out. In the midst of all of this, I also introduced my neighbor to Blanca, as my neighbor is looking for a new cleaning service. 

I met Blanca in 2008, when Mattie was diagnosed with cancer. At that time she was cleaning my neighbor's home. My neighbor understood all we were balancing with Mattie and he could see that we were rarely home. So he paid for Blanca to come and clean our townhouse. Prior to this, I always cleaned our home myself. But I could see I couldn't do it all, and I was grateful for the help. I came to appreciate Blanca so much, that now 14 years later, she still works with us! 

Meanwhile, I am still struggling trying to figure out how to best manage Sunny's chemotherapy and its side effects. I have let go of the notion that Sunny needs to eat two big meals a day. Instead, I now feed him when he can tolerate food and looks hungry. This can be little meals throughout the day. I am following his lead and I am hoping that we can find the right cocktail of meds so that the side effects are at a minimum. Sunny goes for scans next Thursday and we will have some understanding at that point the impact of the chemo. 

Wednesday, June 8, 2022

Wednesday, June 8, 2022

Tonight's picture was taken in June of 2009. Mattie was home between treatments and needing a sternotomy to remove tumors in his lungs. It was quite amazing that given all he was dealing with that he could smile, play, and even function. The average adult would be having a pity party in the corner, and it would be very understandable. But Mattie's courage, stamina, and love of life always came shining through even in the toughest hours. 

As you can see, our living and dining rooms were filled with car and train tracks. Our home was filled to capacity with all sort of things to keep Mattie busy. I will never forget those days, as Peter and I worked around the clock to be everything to Mattie.... doctor, nurse, therapist, teacher, parent, friend, and play companion. 

Quote of the day: No one is useless in this world who lightens the burdens of another. ~ Charles Dickens

What a beautiful quote by Charles Dickens! I never read it before, but I came upon it tonight and decided to include it on the blog. It is a reminder of the true importance in life. It is easy to forget this because we live in a world that evaluates us by certain measures, none of which involve providing care for another human being. 

I had a conference call today. All with working professionals. Naturally I got to hear what they are up to as well as hear about their summer plans. Once again in my life, I am faced with NOT being able to relate to others. When Mattie was ill and in treatment, I rarely interacted with the world. My world was the hospital and desperately finding a cure for Mattie's cancer. If it wasn't one of those two things, then it did not matter to me, and much of my life therefore fell by the wayside. 

Caring for my parents now, has many similarities. I very rarely do anything on my own. I can't plan a day, an outing, a lunch, etc, because my world is absorbed by my daily routine. It is hard not to feel depressed by this, to feel isolated, and frustrated. Some days I wonder how I did not crack up!

On top of everything else I have going on, Sunny is having a bad reaction to oral chemotherapy. He is listless, refuses to eat, and spends a good part of the day, hiding and sleeping. In essence this is NOT Sunny. The vet keeps implying that we just have to find the right pre-med drugs to give Sunny, so that he isn't wiped out by the chemo! Maybe, but the way I view it, is I can't handle ONE MORE THING. Since Sunny refuses eating, it is hard to get pills down him. But tonight I cooked turkey sausages and stuck pills inside the sausages. He ate it! Being creative and changing things up is important with a herding dog. They are smart and he is VERY suspicious of what we are feeding him now. For good reason, because whatever we are giving him from the vet is typically making him feel ill. 

Tuesday, June 7, 2022

Tuesday, June 7, 2022 -- Mattie died 662 weeks ago today. 

Tonight's picture was taken in June of 2009. Mattie was in the outpatient clinic at the hospital and up to his antics. He and Jenny (one of his art therapists) were having a wheelchair race. You wouldn't believe some of the things we did to try to encourage Mattie to use his body and strengthen his muscles. Of course at that point we still thought we were fighting the disease and were hopeful for remission. 

Quote of the day: You have to be patient with Alzheimer’s. Once you understand that it’s a medical condition, you become a little more compassionate. You get less frustrated. ~ Kim Campbell

I absolutely appreciate the sentiments of tonight's quote! It is all very true. Yet there are some days I manage it better than others, as it is easy to get frustrated especially when I am tired. I can't be Florence Nightingale 100% of the time, and must accept that I am only human. 

This morning, my dad and I had an appointment with the foot doctor. Given my dad's history of diabetes, he has neuropathy in his feet and we have found it is a good idea for him to see a foot doctor every 9 weeks. When I first met this doctor, I thought he was socially awkward. But I have come to appreciate that he is just very scientific, but clearly knows his stuff. He tells me I am doing a great job at keeping my dad's feet clean, dry, and well maintained. I had a great foot doctor in the city, but since I moved in August of 2021, I needed to find someone closer for my dad. As moving my dad from one place to another is an act of God. 

Given that I have come to appreciate this new foot doctor, I made an appointment to see him today as my big toe nails hurt and have issues. Turns out even my feet experience trauma and he believes my nail issues are not an infection but from pressure and trauma on the toes. Seems fitting for me!

On an aside, I have noticed whenever I drive my dad in our neighborhood, his first question is.... do I know this person (walking along the road)? Typically I will respond, no! But today, I lost it. I asked him how on earth I could possibly know anyone when I never leave the house? Of course that comment was over his head, but this is an example of how I can get frustrated. I am a prisoner in my own home, tied to chores, cleaning, cooking, doctor appointments, managing bowel movements, and the list goes on. So meeting a neighbor is SO far from my reality, and yet my dad clearly has NO perception whatsoever of our daily existence. 

Later today, I spent some time at the computer downloading photos from the Foundation's walk from the internet. I then began creating some slides (which you see below) that will get featured in our Walk 2022 video. Making the video is a labor of love, and I am sure no one would miss it if I did not create it. But it is a matter of documentation, and slowly but surely I am doing it!

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Monday, June 6, 2022

Monday, June 6, 2022

Tonight's picture was taken in June of 2008. Mattie was six years old and it was a month before he was diagnosed with cancer. That weekend we took Mattie to Bethesda to meet a friend and take part in the town's festival. There were all sorts of activity tents set up for children and Mattie of course gravitated to the one where he got to create. Mattie loved to paint and he was very familiar with painting flower pots, as he learned to do this in preschool. To this day, I still have many of Mattie's flower pot creations. 

Quote of the day: The best way to cheer yourself up is to try to cheer somebody else up. ~ Mark Twain

It was another chemo day for Sunny! As you can see, he IS NOT a happy camper. He hide under a bush today. Totally UNLIKE Sunny. The vet has upped his chemotherapy dosage, and will see if this is sustainable. By this evening, Sunny seems to have perked back up. Of course my constant fear is Sunny will be terribly nauseous and get diarrhea. Which is truly hard to manage in the house when dealing with so many other issues. In addition, I truly hate seeing Sunny sick. But I know we have to go through the process to see if it shrinks his tumors. 

Today Peter wanted a change of scenery, so he worked part of the day in the basement. The basement is a huge change of scenery because it is the one part of the house that I still haven't dealt with. I still have many items of my parents, which have not been unpacked. Nonetheless, the basement is one of Indie's favorite places to explore. Typical Indie, she sat right next to Peter as he was working. She is most definitely Peter's cat!

My mom has spent two years in California really unable to do much, as she was solely responsible for my dad's care. Unfortunately our lives on the East coast don't look much different than what was going on in Los Angeles. My dad needs around the clock assistance and supervision, making it very hard to have any sort of independence and a life. While he was at the memory care center today, I took my mom to an outdoor shopping mall and then I introduced her to True Food Kitchen. This is how they describe their restaurant...

We believe in food that works for you, to nourish you as healthfully as possible…without sacrificing flavor. Based on the anti-inflammatory food pyramid, the brainchild of our founder Dr. Andrew Weil, renowned doctor of integrative medicine, every single ingredient on our menu is carefully selected and hand-crafted into signature dishes that make eating well effortless, energizing and most importantly, full of flavor.

We ate outside, got to people watch and had a wonderful salad and flatbread, that we shared. Now if my mom wasn't here, I most definitely wouldn't have gone out. I would instead be working at the computer. It has been a real adjustment for me since my parent's moved in, because I rarely have time to focus, work, and think! Not being able to get work done makes me edgy and stressed out. Mainly because if I don't work, there is NO Mattie Miracle. It is a constant battle as I try to figure out this balancing act. But I know my mom needs a change of scenery, which is why, I knew I couldn't work today. I needed to come up with a plan. 

Sunday, June 5, 2022

Sunday, June 5, 2022

Tonight's picture was taken in June of 2008. That weekend, like so many weekends, we took Mattie to Roosevelt Island. He absolutely loved the whole nature experience and the beautiful part about this was it was minutes from our home in Washington, DC. If you look closely, you will see that Mattie was holding a toy car in his hands. In fact, Mattie typically never left home empty handed. 

Quote of the day: Life’s challenges are not supposed to paralyze you; they’re supposed to help you discover who you are. ~ Bernice Johnson Reagon

What do you think of tonight's quote? How do you think I feel about it? I absolutely understand the sentiment she is expressing, but HONESTLY! In fact, some of life's experiences do just that.... they paralyze you, consume you, and in some cases can destroy you. Or at least significantly impact your life. I also am NOT a big fan of the philosophy that we grow from our pain, trials and tribulations, and in some cases traumas. I think there are far more constructive and less emotionally devastating ways to find out who we are! 

I have heard so many people tell me that through Mattie's cancer journey, that I have discovered who I really am.... an advocate, who wants to make the lives better for children with cancer and their families. Again, I get it, but my feeling is if I did not channel my passions in this way, it would have been in a different way helping people. Meaning, I would rather not have lived through Mattie getting cancer and dying, and now living full time dealing with dementia, to learn who I really am.  

I am trying to find interesting things to do on the weekends to stimulate my parents. At one time my dad LOVED to shop for food. Now forget it! I can't even get him into a grocery store. We took both my mom and dad to a local farmer's market today. Despite that, I couldn't get my dad walking. He sat on a bench with Peter the whole time, and was basically zoned out. Not absorbing anything or anyone around him. It is truly a nightmare seeing someone you know turn into a hollow shell of who they once were. I am quite certain that without my pushing and intervene, he wouldn't be functioning at all. 

At the Farmer's Market, we saw these long stalked plants! So we asked what they were! They are garlic flowers! I never knew garlic produced a long stalk and flower above ground when it is ready to be picked. They were kind to us and gave us two free flowers to take home.

Garlic flowers are the flowering seeds, or bulbils, of the garlic plant. They emerge at the top of the garlic's above-ground stem. The seeds appear once the garlic has reached maturity. Garlic flowers have a green stem, also known as a scape, and are capped with lime green, pink, or white spherical capsule of fresh miniature flowers and bulbils. Depending on the variety, each capsule can produce hundreds of bulbils the size of a grain of rice or can produce eight to twenty larger bulbils, approximately one centimeter in diameter. The blooms and bulbils are milder than that of traditional garlic bulbs but still have a pungent and a fresh flavor.

I had no idea that you can cook with these flowers! Garlic flowers can be utilized in both raw and cooked applications such as sautéing, roasting, boiling, and grilling whole. Add to soups or salads or use as an edible garnish when finishing hot preparations such as omelets, pizza, and paella. It can also be used in savory side dishes such as rice and mashed potatoes. 

I just think they are beautiful, so I stuck them in a vase with my other plants from our garden!

We took my parents out for an early dinner today. The room we sat in had a very large birthday party of 16 people in it. We stayed in that room because we like our waitress and see her weekly. But the noise was deafening and frankly I don't need much to make me more edgy. Peter's appetizer never came out either, and by the time he got it, our entrees were on the way. So I called over our waitress, who is lovely, and told her all of this wasn't acceptable and asked to speak to the manager. Given all the time we spend in this particular restaurant, you would think their management would know us. So this says a lot about the restaurant! Needless to say, I received an apology, got things comped, and got introduced to a manager. But why must everything be so complicated?