Saturday, April 15, 2023

Saturday, April 15, 2023

Tonight's picture was taken in April of 2007. Mattie was five years old and on that Easter day we visited the US Arboretum. It was a fun place to stroll and my joke with Mattie was that the azaleas always came out in celebration of his birthday month! He loved hearing that. We do not have many photos of just the three of us, so the ones that I do have, I cherish. 

Quote of the day: How beautiful a day can be, when kindness touches it! ~ George Elliston

My dad had physical therapy today at home. His regular therapist is on vacation, so the therapist who works at the hospital with my mom (and used to work with my dad at the hospital), came to our house today. She brought with her home made chocolate chip cookies to celebrate my dad's birthday! So I think he has had quite the birthday week!

We took my dad to Rockville today to dine with Dawn (one of our favorite servers). We met Dawn at the Reston Clyde's, and we took a fast liking to each other. Dawn is a very professional server and takes care of my whole family beautifully! When the restaurant in Reston closed its doors in May of 2022, we followed Dawn to her new location in Rockville, MD. It is a haul to get to Rockville, not because of geographic distance, but because of intense traffic. 

Dawn surprised my dad today with a huge balloon, a card, and a delicious cake with sparkler type candles. Ironically my parents dined out weekly in Los Angeles, but none of their servers ever went out of their way like the amazing individuals we work with in Virginia and Maryland. The servers we interact with weekly are vital to my existence. Some weeks they are the only live human beings I interact with outside of our home. So to me they are very special and what I am grateful for is that they all understand my caregiving role and appreciate what I am doing. 

The birthday boy! Wearing one of the shirts I got him for his birthday as well as his new blue fleece. Even in 90 degree weather, my dad is cold!

My dad and mom!

Friday, April 14, 2023

Friday, April 14, 2023

Tonight's picture was taken in April of 2006. That day I took Mattie to the Reston Zoo. This was a zoo that Mattie absolutely loved. Mainly because it was small, never crowded, and there were a lot of hands on activities. One activity we always did was feed the goats. Mattie enjoyed being around animals. At first he was a bit timid (for good reason), but over time, he understood how he had to behave and what he needed to do to touch and feed the animals. In front of the entrance that day was a big pink Easter Bunny! I am glad I had Mattie stop and take a photo! As you can see he was giving me such a big smile, you can hardly see his eyes! 

Quote of the day: I guess I always thought it would be bigger, when a terrible thing happened. Didn't you think so? Doesn't it seem like houses ought to be caving in, and lightning and thunder, and people tearing their hair in the street? I never - I never thought it would be this small, did you? ~ Dan Chaon

It was another crazy day for me. I was up at 5:30am yet again, in order to get myself ready, breakfast made, my dad showered, dressed, fed, and off to his memory care program. I had to drop him off early because I had my yearly physical. Despite all that I am contending with, I continue to go for regular check ups and assessments. I believe being as proactive as possible is important. 

When I got to the doctor's office, I had an intake process on my cell phone! Personally I am not a fan of interacting with a cell phone when it comes to my health! I know I am in the minority, but I find it impersonal and frankly it is hard for me to take it seriously. One of the questionnaires I had to complete was clearly assessing for my level of depression. I practically laughed in the middle of the waiting room when completing the questions. If I answered the questions truthful, the doctor wouldn't be able to handle the results or me (so the question is why do they do these assessments other than for reimbursement purposes??)! 

I know clinically exactly what the questions were trying to assess and there was NO way I was going there today. For many reasons! One, I would like to see anyone else in my position handle my daily stresses better. Two, without the context of what I am living with, these trite questions are meaningless. Sure I have down days, and I feel down about myself. But that doesn't mean I am clinically depressed, it means that given my caregiving role, I am facing significant stress and exhaustion. Three, though I like my doctor, she is not an empathetic person and therefore trying to have a meaningful conversation about my caregiving role would be fruitless and frustrating for me!

I had no idea that on her mind today would be a discussion about needing to see a breast surgeon. Apparently she feels that I am at high risk for breast cancer. If I wasn't stressed before seeing her, this conversation could definitely send me over the edge. I understand where she is coming from, as she wants to be proactive with me given that I did have atypical hyperplasia in October of 2015, which required surgery. 

My doctor told me that research is showing that an MRI is considered more sensitive for picking up breast cancer than mammography. But at the same time an MRI can miss some cancers that would be detected by mammography. Which is why an MRI is recommended in combination with other tests like a mammogram and/or ultrasound. 

So on top of everything else, I have to get connected with a new breast surgeon for follow up. My doctor said if she prescribed a breast MRI for me, insurance wouldn't cover it, but if a breast surgeon writes a script for one, it will be covered. Truly the healthcare system is crazy and it can make you crazy in the process. 

I loved the surgeon I used in 2015, but she left the area. When my doctor started talking to me today about the limitations of mammography, I KNEW THIS ALREADY! I learned this first hand with my own experience in 2015. In addition, when I had a mammogram, sonogram, and guided breast biopsy on October 30, 2015 (which led me to having more surgery two weeks later), the radiologist who was working with me gave me an education about the mammogram and the benefits of ultrasound. 

If this discussion wasn't alarming enough, she also discussed with me my elevated cholesterol level. Honestly given my stressful lifestyle, I am surprised this is the only thing flagged in my blood work. I know exactly why my cholesterol is high! It is because my parents like eating out. The problem with that is I am not cooking what I am eating and don't know how things are prepped. When Mattie was diagnosed with cancer, our support network was exceedingly kind and brought us meals for over a year, DAILY! Of course it is hard to transport food and the best food for transport, is usually carbohydrates. So in 2009, after Mattie died, when I went for my physical, my cholesterol level was very high! But I found as I began to cook again and eat a more balanced diet, my cholesterol levels returned to normal. 

My doctor doesn't want to put me on medication, as she feels I can modify my diet and she will do blood work on me in six months. The only problem with this is it will take GREAT effort on my part to avoid certain foods. Besides eating out, I am also living with daily stresses. So it is natural to turn to carbs in those moments. Some people do alcohol or drugs, for me it is carbs. They bring me happiness. So overall, this was yet another challenging day, on top of weeks and months that I have endured already. 

Thursday, April 13, 2023

Thursday, April 13, 2023

Tonight's picture was taken on Easter of 2006. That day we took Mattie to his favorite restaurant for brunch. Ironically I did not know there was going to be visits from the Easter Bunny! So I couldn't prepare Mattie. When this giant Bunny came over to Mattie, he was very scared. But then I explained that this was a friendly Bunny who wanted to wish him a Happy Easter. Mattie agreed to a photo and to me this was a precious moment in time. It was completely unplanned, and I have found those are the best moments in life. 

Quote of the day: Wherever there is a human being, there is an opportunity for kindness. ~ Seneca

This morning, Peter sent me this photo from Seattle! He is in the Reverba office and as I told him he is looking great. Considering that he has had very long days since Monday, but I am glad he made the trip, as it has been a very fruitful and important first week at work!

A 9am we received a delivery! This flowers are from Peter's boss, welcoming him to the company. This arrangement most definitely has a West coast flair! The anthuriums from Hawaii are beautiful!

Meanwhile outside our home has been a set of tree trunks. Our neighbor is working on her backyard and I understand why in this case all these trees had to go. Some were unhealthy and dangerous. As of this afternoon, all of these logs are gone. 

I spent the morning going through items donated to Mattie Miracle for our toiletry drive in memory of Mattie's 21st birthday. 

I created a composition with all of the items in front of Mattie's Mr. Sun painting! When the items are in boxes, they don't look as impressive. Out of the boxes, it is very clear how generous our supporters are!

I love to put all the donated items together to feature in our April newsletter, as I believe it is important for supporters to see the work we are doing and how their donations make a huge difference. 

A close up of all these wonderful products!

This afternoon I took my parents out to lunch. Ironically this is the same restaurant featured above with the Easter Bunny! My family has been going to this restaurant in Alexandria for decades! For us it is like walking into Cheers (the TV show). So many people know our names!

Today the restaurant treated my dad to his entire lunch and when chocolate ice cream was brought out with a candle, we all started singing. My dad has his hand up to thank the table behind us who was singing loudly and joining along!

When I got home, I did chore after chore. But Peter text messaged me to let me know that our little neighbors came over to ring our door bell while I was away! The beauty of the Ring doorbell, is that Peter can track it from anywhere. Any case, I text messaged my neighbor and she encouraged me to come outside with her and the kids for a golf cart ride around the neighborhood! So I stopped what I was doing and DID IT! For 15 minutes we zoomed around the neighborhood, people waved to us, and we chatted! I told her it was like THERAPY ON WHEELS!

Wednesday, April 12, 2023

Wednesday, April 12, 2023

Tonight's picture was taken in April of 2005. Mattie was three years old and we took him to Bunny Land at Butler's Orchard (in Maryland). Mattie always had a great time visiting this farm and he was excited to participate in their Easter Egg hunt. Before going on the hunt, we stopped for a photo in front of this Bunny made out of hay!

Quote of the day: The death of my own son has made me more sensitive. It’s made me more compassionate. ~ Rick Warren

It may have been my dad's 88th birthday today, but it was NOT a good day for me. Not for one particular reason, but MANY, that add up to being FED UP on every level. 

I started my day again at 5:30am (NOT my hour!). If I don't there is no way I can meet everyone's needs. My mom had a salon appointment in the city at 10am. Which meant that I needed from 5:30am onward to feed and medicate Sunny and Indie, get showered and dressed, make breakfast, clean up on the first floor, wake my dad up, make their bed, clean my dad's bathroom, shower and dress him, and get him downstairs for breakfast. On these early mornings, the stress I particularly have is herding both of my parents out the door. My mom is scattered and takes forever to get it together and it is stressful constantly giving her count downs to leaving. 

Before driving to the city, I tried to make a celebratory atmosphere at breakfast and wrapped gifts for my dad. After dropping him off at his memory care center, I drove into the city. It was a 40 minute drive back and forth and parking in the city always makes me neurotic, when I have my mom in tow. 

From the salon appointment, I went to pick my dad up at the memory care center and then came home to let Sunny out and fold laundry and unload the dishwasher. An hour later, I got my parents back into the car, and we took my dad out to dinner. 

When we arrived at our table, Cheryl (our server) decorated the table and had gifts awaiting my dad. In fact, she greeted us in the hallway and she and I sung happy birthday to my dad! Of course he is CLUELESS and his main objective was to get to the table!

Cheryl's decorations! I honestly do not expect anything from anyone. Which is why Cheryl is truly an amazing gift to me. She is extremely thoughtful and her kindness is noteworthy!

 

My parents with Cheryl! Cheryl even got us party hats!

The birthday boy!

Tuesday, April 11, 2023

Tuesday, April 11, 2023 -- Mattie died 706 weeks ago today.

Tonight's picture was taken in April of 2005. Mattie was three years old. That afternoon, I picked him up from preschool, and we went to the mall to meet the Easter Bunny. I have to admit that Mattie wasn't sure about this encounter and was definitely suspect of this large creature! However, the Bunny was nice to Mattie and Mattie did give us a big smile. I am so glad I captured that moment, because ironically it was the only time we visited the Easter Bunny. Mattie was far braver than I was at his age. I remember my mom taking me to a department store when I was Mattie's age to have tea with the Easter Bunny. As soon as I saw this larger than life rabbit, I hid under the table! 

Quote of the day: As someone who has lived the nightmare of losing a child, I know that the enormous hole left behind remains forever. ~ Arthur Honegger

I got my dad ready for bed last night around 9:30pm. I am finding he seems very tired this week and totally out of it! After I put him down, my mom continued to watch TV, while I went into my office. I worked from 10pm to almost 2am on writing a review for a journal article. Honestly the fact that I can string two words together right now is a total feat. I generated four pages of typed feedback for the editor of the journal, and I am hoping my insights were of help. The study I was reading about addressed one of the Standards within the Psychosocial Standards of Care, so I was very motivated to participate. But it is hard after a long day and then to wake up this morning at 6:30am, was equally challenging. 

After doing the morning routine with my dad, I decided to wrap all of his birthday gifts. My dad turns 88 tomorrow and though he is going to his memory care center in the morning, we will be taking him out for an early dinner and having him open gifts. I received a text message this morning from Peter to water our plants outside that he recently planted. So I went outside and took my mom into the backyard. She liked the experience so much that we landed up sitting outside for a bit of time. I am glad she enjoyed being outside, because this is something that I love to do! Of course I was monitoring what was going on inside at the same time, because my dad can NOT be left to his own devices! 

My dad's latest anxiety is who will give him his pills if something happens to me or my mom? Honestly if something happens to me, he has a much bigger problem than who is giving him his pills. I know that his anxieties seem to get worse when Peter is out of town. As he views Peter as a back up to me. 

In addition to his anxieties this week, my dad seems to have no energy and when we take him out to eat, he lands up only eating bread and fruit. I have tried all of his favorite foods, but he keeps saying he is full. It is very frustrating because he wants to go out to eat, but when we start eating he pushes the plate away from him and then watches us eat. Of course I know I can't eat in peace, because he has numerous needs such as food requests, needing tissues, toothpicks, and of course runs to the bathroom.

Peter sent me some photos of the office space in Seattle. I grew up in a different era where offices looked more formal! Fortunately when Peter worked in Arlington, his office space had a similar sterile, industrial look. So this did not catch me off guard. But the office has huge windows and is on the 20th floor. 

This is the look with exposed pipes and lights! I truly wonder how people like such an open concept space. I know I would appreciate the windows and natural light. 

Peter can see the famous Space Needle from the office. 

Even the water! I believe this is Elliott Bay. 

The office has quotes and uplifting messages on the walls. You know I love quotes and stories, so this resonates with me. 

Some of the core values and reminders to those who work at the office!

After taking my parents out for lunch, we got back and our neighbor, Lindsay, invited my mom out on a golf cart ride through the neighborhood. Lindsay has a son with special needs who loves this cart. Lindsay knows that my mom desperately wants to go on a bicycle, but physically can't anymore. So she tried to do the next best thing, by giving her a ride, so the wind could go through her hair and she could feel like she was in essence riding a bicycle. It was a very thoughtful gesture. The little boy on the back of the cart, is the 6 year old fellow who visits me often.

While my mom was out, my dad asked me.... are we going out to eat? Keep in mind that we just got back to the house less than thirty minutes before he asked the question. My dad had NO recollection of going out at all, much less eating. It is a deeply sad commentary.  

Monday, April 10, 2023

Monday, April 10, 2023

Tonight's picture was taken on Easter of 2004. Mattie was two years old. That day we went to the US Arboretum and walked around. Mattie loved this park because it was wide open, lots of things to see, never too many people, and wonderful walking paths. As you can see, Mattie found two dandelions and was carrying them around on his favorite form of transportation, on Peter's back. The one of the many things I learned from Mattie was to appreciate nature, walking outside, and exploring. This was not something I did prior to him, but it is definitely one of the gifts he left behind for me. 

Quote of the day: When you are in psychological distress and someone really hears you without passing judgement on you, without trying to take responsibility for you, without trying to mold you, it feels damn good! ~ Carl R. Rogers

Ever since I was a graduate student, I have been a fan of Carl Rogers. Rogers was an American psychologist and among the founders of the humanistic approach to psychotherapy. Even as a young graduate student, his philosophy resonated with me. 

Why? For two reasons. (1) Rogers believed that all people possess an inherent need to grow and achieve their potential. This need to achieve self-actualization, he believed, was one of the primary motives driving behavior. (2) For psychotherapy to be successful, Rogers suggested, it was imperative for the therapist to provide unconditional positive regard to the client. This means that the therapist accepts the client as they are and allows them to express both positive and negative feelings without judgment or reproach.

The humanistic approach is so powerful that I think it transcends therapeutic relationships and instead should be applied to every human interaction we have with people. Or at least be applied to people we wish to have a close connection to in our lives. Just think what a better world this would be if we could approach each other and truly listen to one another without the baggage of judgment, guilt, and ramifications. To be truly heard and our feelings understood are gifts. 

I bring this up because my cousin Maureen text messaged me today. From one caregiver to another, we speak the same language and we are able to understand exactly where the other is coming from. Being a caregiver is a selfless 24/7 role and in the process, I am constantly reminded that the person I am now caring for is NO longer the person I once knew. Even through text messaging, I could tell immediately that Maureen understood my feelings and my exhaustion. Not that it makes me happy that she knows any of this first hand, what makes me happy is that what she said to me today helped to stabilize me. It is hard to be stable at times when living a truly impossible existence. But it is amazing what kind, insightful, and empathetic words can do for one's spirit. 

It was another wild day on the farm. My day started at 5:30am. One thing about me is I am NOT a morning person. Yet since my parents moved in, there is no such thing as sleeping in! That concept is a distance memory! I had to get up very early because Blanca, the lady who helps me clean the house was coming over at 8:30. Which meant that Sunny needed to be fed and given his chemotherapy, I had to get showered and dressed, breakfast made, and tend to my dad's needs in order to get him washed, dressed, and downstairs by 8:30am. I felt like I was on a treadmill. 

After dropping my dad off at his memory care center, I checked in with my mom who looked exhausted. She was sleeping at the breakfast table. I am seeing a pattern. She has a physical therapy session and then two and three days later she is luggage. Too tired to function. So while Blanca was cleaning up, I brought my mom to my bedroom, put her in bed, and let her watch TV. My parents do not want a TV in their bedroom, so in order to make today work, I had my mom in my room. While my mom was resting, I used that time to read a research paper, which I have been asked to review for a journal. Given that the research is on one of the Psychosocial Standards of Care, I truly want to do a good job on this. But finding time to read and synthesize information is close to impossible in my house. Thankfully today I was able to spend a few hours reading, re-reading, and writing notes about the study. 

At 2pm, I went to pick up my dad and took both of my parents out for a late lunch. When Peter isn't home, we go out everyday. It gives us the chance to interact with the outside world. After lunch was over (which I assure you is never peaceful), I got home and was hit with one chore after the other (for example..... folding laundry, unloading the dishwasher, feeding Sunny and Indie, helping my mom deposit checks and pay bills, give my dad his pills, prep my dad's white board, calendar, and journal book for tomorrow, take the trash out to the curb, and open all mail and packages that came in). Literally it is 6pm and I am wiped out with no end in sight. 

Sunday, April 9, 2023

Sunday, April 9, 2023

Tonight's picture was taken on Easter of  2009. Mattie was in the hospital for the holiday. Hospitals and holidays don't go well together. Mainly because it feels like a ghost town, as they try to discharge as many patients as possible for the holidays and the regular staff is typically off. So it's a very isolating feeling, on top of the usual isolating feeling that we had to adjust to upon diagnosis. 

That day, two teenagers (who we had come to know from Mattie's school) came to the hospital to host an Easter egg hunt for him. They placed the eggs all over the pediatric hallways, and they wheeled Mattie around in his chair as he located the eggs. They brought him this beautiful basket as well and the eggs weren't filled with candy, but toys! They knew Mattie really wasn't into sugary things, but definitely appreciated all the little toys. This planned activity was SO appreciated because all distractions helped us take our minds off of cancer and its treatment for a little while.  

Quote of the day: Where flowers bloom, so does hope. ~ Lady Bird Johnson

Peter left the house at 6:30am, in order to catch his morning flight to Seattle. When I got downstairs this morning, I found notes he left for me. Peter leaves them in places he knows I will find them. Like the cabinet with cups! Peter has been doing this tradition for as long as I can remember!

Peter knows I clean the kitchen counters each morning. So rest assured I am in the rag closet often!

My other morning routine is vacuuming the first floor! Which is why the note says... suck it up! Any case these notes brought a smile to my face today. 

It has been non-stop chores today, which began with lots of linens from changing my parent's bed. While running around this morning, my mom called our cousin. My cousin Maureen is an extraordinary woman who has provided care to countless loved ones in her life. If I were Maureen, I would be perpetually in a bad mood. But this isn't Maureen. She is loving, has a great sense of humor, is very patient, and has a positive outlook on life. To me this is incredible.

When my mom chats with Maureen, it gives me time to do things uninterrupted. Typically I do not listen in on their conversations, but while folding laundry I happened to over hear my mom telling Maureen that she cared for my dad the same way that I did when they were in Los Angeles. I was in no mood to listen to that delusional comment, so I out loud I happen to say.... you are delusional, and my mom heard me. My mom has a way of rewriting history, and in her mind she truly believes that she bathed, toileted, and managed all my dad's needs in LA. Of course this wasn't true, as she had caregivers in the morning who managed all my dad's needs and when she took my dad out to eat, he was more independent then, and did not need direct assistance in the bathroom, like he does now. I suppose I should just let her live in her delusional state and most times I do, unless I have reached my limit. 

I took my parents out to brunch. When we arrived at the table, Cheryl, our server, decorated the tables with all sorts of Easter gifts for us. It truly brightened our afternoon and she made us feel special. 

The Easter Bunny was walking around greeting guests and I snapped a photo of my mom and Cheryl!

Me with the Bunny and Cheryl! I remember taking Mattie to Clyde's on Easter and he too took a photo with the Easter Bunny. It was a moment in time I will never forget! 

Cheryl snapped a photo of all of us. While at lunch, my dad had me hopping with napkins, tissues, removing garbage from the table (YES I travel with my own plastic bag to pick up after him at the table), and different food requests. I happened to make a joke about all this juggling I was doing and my dad said he is saying a prayer. Meaning he is saying a prayer that God forgives me for making fun of him. Again, I wasn't in the mood for his humor and I told him he should say a prayer for me because the average child would not alter her life to manage both his and my mom's needs. In fact, I told him if I was the person who needed the the kind of help they need, I am quite sure my parents would have institutionalized me. I am not being mean, it is simply the reality of my situation.

Peter sent me some photos from the sky, on his decent into Seattle!

The building circled in red is where Peter will be working when in Seattle.