Saturday, April 22, 2023

Saturday, April 22, 2023

Tonight's picture was taken in April of 2009. I know the exact day of the week.... FRIDAY! How do I know? Because the fellow making the slime was Chris, he was the president of the chemistry club at the University. Chris and his club friends visited the pediatric units ONLY on Fridays! No matter how badly Mattie was feeling, he always wanted to see Chris. Mattie loved all of Chris' scientific experiments and hands on activities. I can't tell you how appreciative I will always be to this student. I know Chris wanted to eventually go to medical school, and I always wonder... what happened to Chris? May he know that he brought us many happy moments. 

Quote of the day: There are two ways of spreading light: to be the candle, or the mirror that reflects it. ~ Edith Wharton

It is 7pm, and don't ask me what I have been doing today. I feel like I got nothing done. It was a grey and pouring rain kind of day. Thunder included! That sends Sunny right to the basement, as he gets extremely nervous with any sort of rumbling. At around 2pm, I told me mom that she had to get herself ready because we were going to leave at 2:20pm for our restaurant reservation. 

My mom was completely out of sorts, as I found her standing in the middle of her bedroom closet, with the door closed. She said that she did not want to go out because of the rain and felt we should stay home. It was safer! I told her that all three of us were going out and if she wanted to stay home, she was going to do that by herself. Which of course she did not want to do. So she reluctantly got it together and came with us. 

Once in the car, I sensed she was anxious. I prepped Peter and told him what was going on before getting in the car. So we just reinforced for my mom that it was just rain, there are other people out and about, and she was going to be fine. I did not see a change in her behavior until we got into the restaurant. The restaurant was lively and she could see people all around us eating and having a good time. So her attitude changed. But her behavior today was noteworthy, unusual, and not rational.  

In fact, today was the first day my mom admitted that her memory is failing. She did this because she asked me the same question several times in a row. Each time I reminded her the answer, and finally she caught herself which is what triggered her reflection about her memory. My mom needs as much support as my dad, however, the support just looks different than what I do for my dad. Needless to say, managing one parent is hard, caring for two takes the challenges to a whole new level.  

Friday, April 21, 2023

Friday, April 21, 2023

Tonight's picture was taken in April of 2009. Mattie was in his hospital room and sandwiched between Meg (child life intern) and Anna (physical therapist). Both of these women did an outstanding job with Mattie. This may not seem like a big deal to look at this photo, but Mattie spent very little time standing and walking once his surgeries were completed. In fact, Mattie really had to re-learn to walk and put weight on his feet. This was a skill he never had the opportunity to regain because his cancer metastasized only six weeks off of chemotherapy. Nonetheless, the team of women who helped us on a daily basis will NEVER be forgotten! They are remarkable people who not only supported Mattie, but me as well!

Quote of the day: Life doesn't get easier or more forgiving, we get stronger and more resilient. ~ Steve Maraboli

It was another 6am morning, a time of day I absolutely despise. But if I didn't get up early there would be no way I could accomplish all that was on my plate and also get my parents to their cardiology appointments on time. When I tell you I am moving constantly from one task to the other. I feel frenetic and I can't even imagine a day much less an hour to myself. I have slowly lost all sense of my own identity, my ability to have friends, or any independence and freedom. Though the circumstances are very different, these feelings are not unlike when I was hospitalized with Mattie. The same lack of control and freedom are once again back in my life. 

My parents had a good appointment with the cardiologist. His office is super nice to me, because my parents did not have back to back appointments. Yet they allowed us all in one room together and the doctor did see them back to back and treated us as one family unit. He is a stellar cardiologist and between him and the pulmonologist, I feel like I have found my parents two outstanding physicians. 

After the doctor visits, I got them back into the car and I took them out to lunch. I admit it wasn't one of my better days. My dad now has the habit of consuming every bread product on the table. He moves as fast as a vacuum sucks up dirt. Of course with so much bread, then it is hard to eat his meal. So today when his meal came, he ate some of it (he started having trouble swallowing, because he eats way too fast, and so I have to manage the choking issue, which means I can never take my eye off of him not even for a minute) and then pushed it his plate in front of me to deal with. This meant he did not want to eat any more and he was finished with eating. At that point his head goes down and he is completely disengaged and ready to leave the restaurant. In essence, he will then stare at us to finish. But mind you we just started eating. The pressure I feel around him and managing his needs can be wearing. 

Of course I have learned to eat much faster now, because I know as soon as food goes in, food is quickly going to come out of my dad! I have a window to eat because my dad will want to jump up and need to go to the bathroom. But going to the bathroom isn't just pointing him the way. Nope! I means getting his walker, helping him up from the seat, guiding him to the women's room and then taking him into a stall with me. My dad can't negotiate anything by himself and needs coaching while in the bathroom. I carry my Mary Poppins tote bag with me filled with wipes, depends, absorbent pads, gloves, and garbage bags. I couldn't make it without this bag. 

When we finally got back to the table, I find all this activity takes my appetite away. My life isn't normal and I can't have a normal conversation. My dad has ZERO responsibility in his life. His therapists at the hospital encouraged him to get more engaged and to do things at home to help me. He refuses, has no interest, and I feel like I am working with an obstreperous child at times. I mentioned to my dad that he could take more responsibility when we eat together.... to slow his eating pace down, not consume so much bread and starches, and to be more mindful of the fact that we are here together and when he piles up plates in front of me and he is ready to leave, this bothers and agitates me. I certainly wouldn't do something repeatedly that agitated him, so why can't he comprehend my feelings??? I know the answer, I am dealing with someone who has moderate (moving to late) stage dementia. He is no longer capable of the mental activities and sensitivities I would hope to experience. I cognitively understand this and most times accept this reality but other times, I just LOSE it! As I said to my dad today, 'I could get more of a response out of the wall next to me than I can out of him.'

I am emotionally and physical spent. Yet I have to mentally prepare for the fact that tomorrow is yet another day of more of the same.  

Thursday, April 20, 2023

Thursday, April 20, 2023

Tonight's picture was taken in April of 2009. That day, we went outside from the second floor of the hospital. Out there was a rose garden and other outdoor spaces to escape the day to day stresses of living in an institution. Within this space was an art therapy statue of an elephant. Tile creations were glued to the elephant on a rotating basis. Mattie's nurse, Kathleen, created the 'curious George' tile (that you see here) in Mattie's honor! Mattie's left leg/foot was the only limb untouched by surgery. Therefore, Mattie used that appendage almost like an arm and hand! That left leg/foot got nicknamed, Curious George. Mattie loved that his name sake made it on the elephant!

Quote of the day: The words of kindness are more healing to a drooping heart than balm or honey. ~ Sarah Fielding

I took my parents out to lunch today! We go to the SAME place every Thursday, and have a regular server at this particular restaurant who takes care of us. Needless to say, my family has been going to this restaurant even before Mattie was born! Then when Mattie came into our lives, it turned out that this restaurant was so close geographically to his preschool and elementary school, that it became one of his favorite hang outs. If it is possible for the TV show, Cheers to exist, then this restaurant is my Cheers. We know all the managers, most of the hosts, and a good bunch of the servers. 

This afternoon, while packing up my dad's tote bag, to leave the restaurant, one of the managers came over. We talk with him often! He told my mom that he has been working in the restaurant industry for 35 years. In that time, he has seen ALL sorts of families! However, in all his years he has NEVER seen anyone like ME! He asked my parents whether they knew how lucky they were to have me in their lives. The manager said that I am an angel, who is going straight to heaven. He doesn't know another adult child who takes on what I do, and I always am polite and kind to those around me. He also said I never look like a mess or seem exhausted. FUNNY!

In any case, Lou's words and feedback today meant the WORLD to me! Like tonight's quote points out, words of kindness are indeed healing to a drooping heart! It always amazes me who is absorbing and observing what I do. I remember this happening on many Princess Cruises I took with my parents. Typically on the last few days of one of our cruises, passengers would come up to me and commend me for what I was doing for my parents. Again, I was just being me and going about my own business. I do not do what I do for accolades, but I must say, when strangers take notice and comment to me, it perks me up. It perks me up because what I endure each day is not for the meek and it is very easy for me to get down on myself and my existence. 

Wednesday, April 19, 2023

Wednesday, April 19, 2023

Tonight's picture was taken in April of 2009. Given that Mattie was wearing clothes, and not pajamas, I know that this had to be a hospital admission day! Mattie refused to wear clothes once admitted to the hospital, and I did not fight his request. That evening, the fabulous musical duo of Jerry and Nancy came to visit us. They were playing a musical game with Mattie, in which he had to move his body to the music. For the most part, Mattie did not like the volunteers and did not let them even come in his room. But there were a handful of people Mattie did enjoy seeing despite how he was feeling. What I do know was singing along with Jerry and Nancy made all of us feel a little better. 

Quote of the day: In order to write about life first you must live it. ~ Ernest Hemingway

It is 6:45pm, and I feel like I went four rounds today. For no particular reason other than the simple daily tasks I perform. I got up early because I had to get both of my parents out the door by 9:15am. I can't tell you just how challenging that is to accomplish! My mom especially can't manage early mornings. My dad frankly doesn't know if it is morning or night! 

I haven't been providing nanny camera updates, but my dad is still up and down at night and spends practically 90 minutes or more sitting on the toilet. Watching my dad's daily decline is beyond depressing and as he slips further and further into his cognitive fog, I feel that in a way it takes yet an unrecorded mental toll on me. 

This morning, I went back to the pulmonologist's office. This time, it was for an appointment for my dad. He had to undergo a breathing test, which he did not like one bit. Ironically in 2005, my parents sold their house in Los Angeles and  relocated to Washington, DC to live closer to us. They lasted here three months and then returned back to Los Angeles. My dad at the time was having issues with the cold weather and was coughing non-stop. They told me the pulmonologist recommended that they go back to living on the West Coast for my dad's health. Since I wasn't part of this dialogue, I just accepted this pronouncement. 

Now that I am older and wiser, I realize that most physicians probably wouldn't tell a patient such a thing, particularly because physicians understand the value of having family nearby as their older patients age. So now looking back at what transpired in 2005, I am furthered bothered by my parent's decision. After all, this was the time they could have spent with Mattie, watching him grow up, and be a part of his and our lives. Certainly if they had remained living here with us in 2005, it would have made this transition now much easier. Because they would have potentially made new friends, got engaged in activities, and learned to drive and navigate around our area. Now it is too late, and instead, I have become everything from nurse, cook, housekeeper, coordinator of activities and appointments, and chauffer. 

The funny part about all of this is my dad got an excellent report from the pulmonologist. Certainly his lung functioning isn't great, but given his age and the fact that he is hunched over, this is no surprise. Nonetheless, the doctor wants me to schedule a CT of my dad's lungs so we have a baseline report, in case he should get ill or something arises. Now trying to get my dad flat on a table for a CT scan will be EXTREMELY stressful but yet another thing I will have to confront and manage. 

After my dad's appointment, my parents wanted to go out to lunch. Eating has become more of a chore than a pleasurable experience for me. My dad has two modes when eating.... one which entails needing constant support and supervision and the other is THIS! Completely asleep and disengaged with the world. Depressing I tell you!

Tuesday, April 18, 2023

Tuesday, April 18, 2023 -- Mattie died 707 weeks ago today. 

Tonight's picture was taken in April of 2009. Mattie and Peter built this wonderful suspension bridge together and Mattie was very proud of this achievement! You may notice that Mattie had his leg in a cast. Mattie's leg was casted in hopes that we could straighten out his leg, because it seemed permanently bent at the knee. Given all that Mattie had endured, it is truly remarkable that he was able to play and smile. He will always be an inspiration. 

Quote of the day: Giving kindness does us as much good as receiving it. ~ Piero Ferrucci

It was another full day down "on the farm!" Which is what I call our house! In any case, Peter had a doctor's appointment today and Sunny also had his routine scans to monitor the tumors in his stomach, bladder, adrenals, and spleen. Thankfully we brought my dad to his memory care center, because there is no way I could juggle him in the mix. 

After we dropped off my dad at his memory care center, Peter and I drove to the doctor's office. Peter was on a conference call when we arrived at the office, so I let him stay in the car, while I went in 15 minutes early to check him in. When the physician's tech came out to the waiting area, I could tell she was looking for Peter. Since NO ONE else was in this area, I asked her.... 'are you looking for Peter Brown.' She said, 'YES WHERE IS HE?!' I explained that he was on a conference call and that I am sitting here holding his place. She did not like that one bit. She then proceeded to quote me office policy, that the patient MUST be in the waiting area 15 minutes before an appointment. Me being there was NOT enough. How I kept it together and did not bop her over the head was remarkable. But she was NOT letting up. She kept at it with me, peppering me, and implying because Peter wasn't waiting, he wouldn't be seen! Which was down right ridiculous since first of all he is a concierge patient and second there was NO ONE else in the office!

I text messaged Peter to get off his call and get inside the office. While doing this, I literally told the tech, "take a deep breath, you are going to make it!" She down right infuriated me. Those of you who have been following the blog on a regular basis, know that I refer to this doctor as dopey. Well it turns out that dopey is taking an unexpected and unplanned early retirement, and he is giving up his practice. We just learned this yesterday. Honestly this doesn't surprise me one bit, as I am quite certain he is experiencing his own form of dementia. 

But this transition to find a new concierge doctor sent me scrambling today. Turns out dopey is referring his patients to another doctor at the hospital. I called that office today and scheduled a meet and greet in June with him. Because dopey and this other doctor work for the same concierge company, it will make it a lot easier to transfer patient records. 

Thankfully it appears that Peter just has a very bad allergy, and his cough is nothing more serious. No need for a chest x-ray. Nonetheless, I am happy Peter is seeing my mom's pulmonologist on Friday and Monday. Since Peter never had allergies before in his life, this is definitely a new one for him. I live with chronic allergies and have for decades. The doctor says that since we moved to a more rural area from the city, that Peter's body maybe adjusting to this change. He says it can take up to a year to develop an allergy once in a new location!

Meanwhile, Sunny's situation remains stable in his stomach, liver, spleen, and bladder. So the chemo is being tolerated and though it would be nice to see a reduction in tumor size, I will take STABLE. With that said, Sunny has developed a new tumor (5mm) in his anal gland. So in four weeks, he goes for a physical exam to determine if there is any further growth in the anal tumor. If it grows larger, we may have to consider surgery. Of course with surgery means Sunny would have to stop chemo periodically, which is never good, and this change could cause further growth at his other tumor sites. Which is why I take it ONE DAY AT A TIME in my household. 

Midday, I took my mom out to lunch and then we went shopping. We have a lovely outdoor mall close to us. We haven't been to this particular restaurant for months. When we returned today, our server (Meredith) was thrilled to see us. She showed us her wedding photos and she told us we made her day, as she considers us one of her favorite customers. As tonight's quote points out, kindness can go both ways, and we always try to make Meredith feel special and in turn she shares this kindness. Which as a result made all of us happy today. 

Monday, April 17, 2023

Monday, April 17, 2023

Tonight's picture was taken on April 4, 2009, during Mattie's 7th (and last) birthday party. This party was held in the hospital's playroom and it was a very exciting day for Mattie. He decorated the playroom in the morning and anxiously awaited his friends to visit after school. Mattie's art therapists created this roach themed card for him because they knew how much I hated them and how much Mattie enjoyed seeing me lose it over even hearing even the name of the bug!

Quote of the day: Kindness is an electrical spark of life that runs through all kingdoms and has a reciprocal action when shown to others. ~ Joe Hayes

Though Peter started his new job officially last Monday, today he was introduced to all the members of the company. I am so glad it was a positive day for him and that people can see he really has the "heart" for the company. As Peter knows that medical care is NOT just about the medicine. His passion for this exudes from him and I am so glad he is now at a company that can appreciate his various talents and gifts. 

Peter has been under a great deal of stress with both our living arrangement and looking for a job. In January, when he went to visit his parents in Boston, he came back to Virginia with what appeared to be a cold. He had congestion, a cough, and a terrible post nasal drip. These symptoms have cycled from mild to more severe. In fact, after his second trip to Boston to visit his parents and then the Seattle trip on top of that, Peter's symptoms have become debilitating. Nothing seems to be helping him from cough syrup to cold medications. 

Today I reached my maximum threshold of anxious and concerned about his symptoms. Mainly because they aren't going away, Peter is starting a new job, and he can't be debilitated with congestion and coughing. So after I got myself showered and dressed, while making breakfast, I called his internist and got an appointment for him tomorrow. On top of that, I took my mom to her pulmonologist today. This is a doctor I absolutely LOVE. He is competent, listens, gets to know you, and returns his messages himself in a very timely fashion. In fact, when my mom was ill for a month, he is the ONE who helped me get her better with intense rounds of antibiotics! 

Any case, after discussing my mom's health today with the pulmonologist, I told him about Peter. He could hear my concern. This doctor is sensitive to the fact that I am a caregiver to both parents, and could probably put two and two together to know that Peter is an important part of my equation. So literally he handed me a piece of paper, asked me to write down Peter's name, birthday date and phone number, and he told me he would talk to his office manager about getting Peter in as a new patient ASAP. 

So it is 5pm now, and Peter has an appointment tomorrow with the internist, will get a pulmonary function test on Friday and sees the pulmonologist on Monday. Needless to say, I will be attending these appointments with Peter. Certainly he can't manage these meetings himself, but with my level of anxiety, I need to be part of the process to calm down. 

Sunday, April 16, 2023

Sunday, April 16, 2023

Tonight's picture was taken in April of 2009. It was Mattie's 7th birthday and he was celebrating it in the hospital. That day, Mattie and his child life specialist, decorated the playroom, for an afternoon party he was going to have with a few of his friends from school. Mattie worked hard to decorate the room and to get it ready for his friends. He even worked out what games they would all play together. Despite being in the hospital, the child life staff worked hard to make the day go smoothly and beautifully. They worked out all the details and it was a memorable day for Mattie. 

Quote of the day: Sometimes miracles are just good people with kind hearts. ~ Unknown

Last night when everyone went to sleep, I stayed up to create Mattie Miracle's April newsletter. Everything from graphics to content. Though I wanted to rest, I just knew that there would be NO WAY I could get anything done today with my parents in tow. Needless to say it was a wise decision!

Tonight's posting highlights the beauty of our garden! Or I should say Peter's garden. While Peter was busy looking for a new job opportunity over these past months, he would take breaks and work in the garden. YES even over the winter. Peter moved 60 cubic yards of mulch all by himself, to all of our flower beds (a cubic yard is a box full of mulch that is 3'L x 3'W x 3'H). He trimmed trees, shaped bushes, fertilized trees and shrubs, transplanted bushes from one location to another, and needless to say, all his work has paid off. The colors in the garden are amazing. 

We have one cherry tree in our garden and it is simply glorious!

Peter planted blanket flowers! I love them because they are all Mattie Miracle themed colors. 

Peter is growing all sorts of things this year, starting with this pot of herbs. 

More herbs. Many of them wintered and came back this year! 

I love this corner of colorful flower pots. Behind them you will see a blue bird house. This house was a gift from a friend and guess who loves it? Bluebirds. Every year they return to this house to lay and hatch their eggs. 

Peter's vegetable canvas pots! He is growing romaine, cucumbers, tomatoes, beets, kale, squash, and peppers. 

One of my favorite spring sightings.... the tiger swallowtail butterfly. I remember when we first moved into the house, one of these graceful butterflies came right up to me. I photographed it and that photo is now framed in my bathroom. I feel these butterflies carry messages from Mattie. 

There is a portion of our backyard filled with azaleas. Well to be fair, the azaleas were everywhere. Peter has been transplanting them over time so that there are bigger pops of color! 

If I had any doubt, spring has sprung. I remember all too well when caring for Mattie in the hospital, that I lost track of months and wouldn't even know season it was. My life now has some similarities to back then! Each day is just like the day before. However, our garden truly helps me keep track of time and the fact that we are definitely moving into the warmer weather season.