Saturday, June 25, 2022

Saturday, June 25, 2022

Tonight's picture was taken in June of 2007. That weekend we took Mattie to Pennsylvania, to visit Dutch Wonderland. An amusement park geared toward smaller kids. Mattie had an absolute ball and tried every ride possible with Peter. I was fascinated by this big slide, but there was no way I was going on it! Fortunately Peter likes this kind of stuff, and I was always happy to be the family photographer! Ironically when Mattie first started preschool, he did not like slides at all. But over time, he came to appreciate them, so much so, that he was able to go on this huge slide. 

Quote of the day: We don’t remember days, we remember moments. ~ Cesare Pavese

My day started at 5am. I heard my mom's alarm go off (yes she sets it for 5am everyday, and don't ask me WHY) and at the same time, Sunny was in my bedroom pacing. I knew exactly what that meant, especially since there were NO storms. The chemo is wrecking havoc on his stomach and causing him to need the bathroom at all hours. Typically Peter carries Sunny down our staircase, as Sunny can get up the stairs, but because of his age, is unable to get down the stairs. Not so much a problem when Peter is home, but now that he is in Boston, I had to get Sunny down the stairs myself. 

Sunny is 65+ pounds. Fortunately I have a harness that straps around his front and back end. I got this harness from Sunny's physical therapist, when he was recovering from his knee surgeries. Thank goodness for the harness. I literally had to carry him down the stairs in the harness. Sunny won't help me, as he is deathly afraid of going down the stairs, but I knew he had to go outside, so I have no idea how I managed 65 pounds down the stairs, but I did it. I left Sunny outside in the backyard from 5-7am, because I had to go back to sleep. I am just too exhausted and frankly could sleep a month.  

I have been able to coax Sunny to eat food today, which is a great sign. But I do admit that his breakfast is served to him by hand feeding him each piece. So in addition to my typical routine, I am balancing Sunny. After I got my dad washed, dressed, and downstairs, we had breakfast together and then I took my parent's to the local farmer's market. My dad refuses to get out of the car, which is sad because he used to LOVE shopping for food. My dad really has three modes now... eating, sleeping, and pooping. He has NO interest in much else, and forget about making conversation. 

Later in the day, I took my mom into two open houses. Frankly at this point, I feel like I could be a realtor in Oakton, VA! While touring the houses we met a lovely realtor, who is 78 years old. He doesn't look it, and has led an incredible life. He was even a prison of war. I always find talking with people who have trauma in their lives absolutely fascinating. Because you can't help but wonder.... how on earth are you still standing? How do you still smile, talk to people, and find a way forward? I say this, of course knowing that I too am a trauma survivor.

I then took my parents to Maryland for dinner. While at the restaurant, my dad had to use the bathroom twice. The second time I couldn't get the bigger stall in the bathroom, so my dad and I squeezed into a regular stall. I assure you it was a sight. I made a third trip to the bathroom with my mom. While waiting for her by the sinks, I was minding my own business, probably in a fog. All of a sudden a teenage girl came up to me. She said.... "you look beautiful." Honestly I thought she was talking to someone else at first, but then she looked right at me. I told her that he comment made me smile and that was so nice of her. Internally I feel like I am falling apart, so hearing this lovely comment, lightened my mood. A kind comment can go a long way and I wanted to tell her as such, but I figured a teenager really did not want to hear my lament. 

Peter sent me this photo with his Uncle Dave. Dave is facing his own cancer journey and the family held an outdoor gathering today in his honor. I am happy Peter could be there to support this special man. However, while driving to Connecticut with Peter's parents in tow, their car's tire blew. Right in the middle of the highway. Needless to say I was NOT happy to hear this news, because this could really have been a deadly accident. There is just no end to the stress I am balancing. 

Friday, June 24, 2022

Friday, June 24, 2022

Tonight's picture was taken in May of 2007. That weekend we took Mattie for a trip to Pennsylvania. Along our journey we stopped at the Cherry Crest Adventure Farm. We hadn't planned to stop there, but this colorful thing in the fields caught our attention while driving. So we pulled over to check it out. No one else was around and we had the opportunity to experience a jumping pillow for the first time. It was like a trampoline, but without leaving the ground! Mattie had a great time! You have to love unplanned adventures. Sometimes they are the best kind. 

Quote of the day: You never know how strong you are… until being strong is the only choice you have. ~ Cayla Mills

I got up at 6am today in order to feed Indie and start Sunny on his pre-treatment medication before I gave him chemo. It was NOT a good eating day for Sunny. In fact, I couldn't get him to eat all day. If I wasn't caregiving, I could probably spend more time coaxing and nurturing him, but unfortunately I can't devote my sole attention to him anymore. 

I got myself ready, made breakfast, got my dad showered, dressed, and downstairs for breakfast. I had to drive him 30 minutes earlier today to his memory care center, because I had a conference call at 10am. Honestly how I pull it together to look somewhat coherent for any of these calls is amazing. But I actually found the call stimulating and it helped me refocus on our passion for psychosocial care. So though I scrambled to make the timing work this morning, it felt good to participate in something other than my daily routine. 

On an aside, one of the participants on the call today was telling this pharmaceutic company (who we were being introduced to) about Mattie Miracle. The participant said that he was at a conference in Pennsylvania this week and while there an advocate from Ohio told the group that if they are looking for a strong, well run organization, whose leadership are parents of a child with cancer (with no admin!), they have to check out Mattie Miracle! Beautiful to hear, no?

After the call, I tried to feed Sunny again, but he wasn't interested. So I focused on more chores and tasks and then at 12:30pm, I got Sunny in the car, and we headed to the vet. Sunny needed another urine culture to make sure his infection has cleared up. Considering I needed Sunny to have a full bladder, I gated him off this morning on our porch. That way it insured he would be able to take this urine test. Sunny did not mind, as I could see he was tired and not himself. 

Sunny is so used to going to the oncology office, that as soon as he gets into the waiting room, he claims the doggie bed. Interesting that today's blanket was Scooby Doo. Mattie would have approved of this choice. In fact, as soon as I saw this blanket, I thought of Mattie. Mattie would have loved Sunny and I wish they could have met each other. 

Everyone at the center LOVES Sunny. Some of the techs come out just to pet him! He is that kind of gentle giant. 

This afternoon, I took my parents to Maryland, to have lunch with Dawn. Dawn is a server we met in Reston. When the Reston, VA restaurant closed its doors after 25 years, Dawn moved to their sister restaurant in Rockville, MD. We go to this restaurant twice a week to see Dawn. She makes a big deal over my dad and she is great stimulation for all of us. 

Certainly going out to eat is hard time wise for me to balance. But going out serves many therapeutic purposes for both of my parents. It gets them physically moving, outside of the house, interacting with other people, and for my dad it slows down his eating pace. As a restaurant serves in courses, so he can't eat all at once. 

Today Dawn presented my dad with sorbet that had a candle in it. For no reason, other than just because. Dawn is a class act! Each visit, I bring a report card that I make and the card always asks stimulating questions. For example today's card asked, "What helps you predict or determine the quality of a customer interaction you will have?" We are getting an education about the restaurant industry and of course we are getting to know Dawn better, which is lovely. 

 

Peter is in Boston and this evening he sent me this photo of a chipmunk. When Mattie was alive, his first chipmunk encounter was at Peter's parents house. Mattie affectionately called the chipmunk, "Chippy." In fact Chippy was so popular that Mattie wrote a story about this fellow in his writer's workshop in kindergarten.  

Thursday, June 23, 2022

Thursday, June 23, 2022

Tonight's picture was taken in June of 2007. That weekend we took Mattie to Dutch Wonderland in Pennsylvania. It was a park with all sorts of rides, including rollercoasters. Peter mentioned to me the other day that before going on a rollercoaster, he took Mattie on a water ride. I frankly did not remember that until I saw this photo. Mattie enjoyed this ride so much that Peter then decided to take Mattie on his first rollercoaster ride. It turns out that Mattie LOVED rides, and particularly enjoyed rollercoasters. The total opposite of me! I am so glad that Mattie and Peter got to experience this joy together. 

Quote of the day: When the hard things happen to us it enables us to be there for someone else later. ~ Dawn Camp

Peter decided to plant cucumbers in our backyard this spring! This is the first cuke that has come in! We have never grown them before, so for us this is exciting. 

Peter even measured it! Not bad at 7 inches. 

Peter is flying to Boston today. He is headed to see his parents, because together they will be driving to Connecticut on Saturday to visit his uncle. Peter's uncle is facing a tough cancer journey, and the family is rallying together for support. I am saddened I can't be there, but given my parent's situation, it just isn't possible to make this trip. 

I selected tonight's quote because I do think going through difficult times enables us to help others. We can help others because we have learned the WORDS that are necessary to convey the thoughts and feelings one faces and contends with on a similar journey. That may sound funny, but I do think with each life lesson, we enhance our vocabulary. Yes our vocabulary! As most of us aren't born with, or develop certain skill sets and the words necessary to adapt and survivor with certain crises. Instead, we learn these words, have these insights, and integrate them into our minds, hearts, and spirit because we have the lived experience.  

Because I am unable to go to Boston, I got little gifts and wrote cards to Peter's uncle, his wife, and each of his children. Most people may have a challenging time figuring out what to write, given the circumstances. However, to me talking about cancer, the loss associated with this diagnosis, and the fear of dying are all natural to me. I can talk about them almost easier than other common place topics. I am not sure if that is a good thing or a bad thing, but it is my reality. I am very comfortable in this space, and probably less comfortable with the more normal aspects of life. 

Today two of my friends came over to chat with my parents and then we went out to lunch together. Peter stayed home with my dad, and we took my mom out. Though my friends ultimately want to support me, I do think that my mom is the one who benefits from these visits and outings. All I know is I feel stressed on every level and what I find most challenging is NOT the daily tasks I do (though they are exhausting), it is not having a minute to myself. Not having the freedom to make my own decisions, and have independent relationships and conversation. It is hard to describe what I am talking about, all I know is I feel frustrated and in need of my own space. Putting how I feel aside, I am very lucky to have such wonderful friends who care and are trying to help change up my daily routine.

Wednesday, June 22, 2022

Wednesday, June 22, 2022

Tonight's picture was taken in June of 2007. Mattie was five years old and that weekend we took him to Lancaster, PA. On our drive, we stopped at a Pretzel factory. Mattie learned about how they make the dough and even learned how to twist a pretzel. We were on our way to Dutch Wonderland, a theme park geared toward preschool and elementary school children. I am so glad we did these weekend outings, because we learned the hard way that time is not guaranteed. 

Quote of the day: Alzheimer’s caregivers are heroes. ~ Leeza Gibbons

Tonight's blog is going to be short to non-existent. I developed a sudden migraine this afternoon, and it makes it impossible to function by a computer. 

Today's Sunny photo! Because of the lightning and thunder, he headed to the utility closet in our basement! 

I went to the Mattie Miracle mailbox today and received a check from a donor for $25,000! Needless to say it felt like winning the lottery.  

Tuesday, June 21, 2022

Tuesday, June 21, 2022 -- Mattie died 664 weeks ago today. 

Tonight's picture was taken in June of 2007. Mattie was five years old and pictured next to him was one of our caterpillar jars. Each spring, Mattie would bring home from school caterpillars that he found on the playground! The first year he did this, he was in preschool, and I must admit I was stunned to find him carrying caterpillars home! But I went with it, as I figured this was a great way to learn about metamorphosis. Together we experimented until we found the right jars and the leaves these caterpillars liked to eat. Turns out they only ate oak, and thankfully we had an oak tree near our townhouse. Each day, we would clean out the jar, as these fellows were messy! But then the excitement of seeing a cocoon (as you see in this photo), indicated to Mattie and me that we did a good job caring for them. About a week later, moths would break through and we would release them on our deck. The moth release ceremony was an annual occurrence!

Quote of the day: Vulnerability sounds like truth and feels like courage. Truth and courage aren't always comfortable, but they're never weakness. ~ Brené Brown

This morning, after my usual routine, I hopped on a conference call at 10am with our research group. The group is comprised on some very sharp and gifted researchers and clinicians. I have been working with several of these women since 2011.... another words a long time. Of course when I am on a call with them now, I can feel vulnerable. Vulnerable NOT because I don't feel I can keep up! Vulnerable because my life looks SO SO different from theirs! They are accomplishing a great deal, and have tangibles to show for their work. My work now, has no exact tangibles, no compensations, and frankly the work won't get easier. As caregiving with for older adults, only more issues arise. 

I could let all of this get the best of me! But I don't. I try to hold my head up, participate and engage. Despite my level of depletion, the bottom line is I was able to raise money for the Foundation's work this year, and as such, this enables me to consider funding at a higher level a larger scale psychosocial research project. So when down on myself, I have to reflect on that, as Brené Brown's quote suggests.... truth and courage, are NEVER weakness. Beautifully stated. 

Managing my day to day routine is extremely challenging because I am not caring for just one person. I have two parents, both with significant needs. At any given point in the day, I am helping one of them and at times both of them. Some days I feel like I could lose my mind, but I remind myself, not just any one could do what I am doing. It is just the reality. My mom is no long capable of doing things independently and yet is adamant that this isn't the case. It is the reality, which in time she will accept, but she isn't there yet. So in the mean time, when my dad goes to his memory care center, I am with my mom trying to get her moving, out of the house, and engaged with the world. 

I laughed internally when my dad's memory care center said that his time there would give me time at home to rest, regroup, and get work done! WHO ARE THEY KIDDING? That would be true if I were a caregiver to one person. Not true when caring for two. Today while my dad was at his memory care center, I made doctor appointments for my mom, got scans and documents sent from Los Angeles to her new doctors, and I am happy to say my mom is starting physical therapy next week. It is crucial because her physical decline is steep. The last time I saw my mom was in Los Angeles in April of 2021. I did not return to LA until November of 2021. In just 7 months, I couldn't believe what I found. My mom was walking hunched over to the right. Now she is at least NOT leaning to the right, but I can't get her to stand upright. I am hoping that the therapist can assist me, because slumped over like this makes her a fall risk. 

Monday, June 20, 2022

Monday, June 20, 2022

Tonight's picture was taken in June of 2008. It is actually hard to imagine that this photo was taken one month before Mattie was diagnosed with cancer. We were clueless and naïve back then! I also find this photo rather ominous because in the background was Georgetown. A place we then spent over a year of our lives trying to fight back Mattie's cancer. This photo was taken on Roosevelt Island, a place Mattie loved to go to! That weekend we took Mattie and his remote controlled boat to the Island. As you can see, he and Peter got right into the Potomac River to play with the boat. The bathtub did not cut it anymore, Mattie needed more open water to test drive his boat. 

Quote of the day: It isn’t what we say or think that defines us, but what we do. ~ Jane Austen

Sunny got a lot of outdoor time today, but was staying close to the door. He wasn't acting like himself and yet again we are trying to figure out the right balance of anti-nausea drugs and have even added an anti-diarrheal to his daily routine. All I know is balance his chemo and his needs on top of my parents is quite a juggling act. 

Sunny loves his backyard time and I am grateful we have this space because now that I am a full time caregiver, I am finding it hard to figure out daily Sunny walks! 

Today was another day of back to back chores and tasks. Starting with changing and laundering my parent's bed linens. I always dread this day, because my dad uses about 15 pillows. 

I took my parents out to eat today. I am not sure what is harder cooking, serving, cleaning, and jumping and down to manage my dad's bathroom issues at home, or going out to eat. Either case, I never have a minute's peace. My dad eats super fast and I eat slowly. However, because I may have to jump up from the table at a moment's notice, I eat faster than I should. Which for me triggers hiccups. Some days I don't know if my food will be digested.

We have gotten to know our waitress very well. We followed her to a Clyde's in Maryland, after the Reston, VA location closed in May. Dawn cares for everyone in my family and she is very good with my dad. Out of fun, we create a cute report card for Dawn at each visit. I initially started this to engage my dad! However, like so many things, he refuses to think about questions and therefore makes me do it. So here was the report card I came up with for today! It isn't a typical rating sheet, but instead one that is interesting, humorous, and gets us all talking. I always try to find ways to engage my dad and get him to participate in conversation! Which I assure you is like mission impossible. 

While eating my dad asked me what day of the week it was! You should know that when at home he has a paper calendar in front of him, an electronic calendar (that tells him day, month, time, etc), and a dry erase board. I use the dry erase board each day to tell him the schedule for the day. As he completes things I check them off. Needless to say, he has access to what day it is, but nothing registers with him. So while at lunch, he asked me what day it was. Since we were in a restaurant, I know he doesn't have access to the calendars or dry erase board to find the answer to his question. So instead of outright telling him it was Monday, I asked him what was yesterday? HE HAD NO IDEA. Despite celebrating Father's Day! I reminded him that yesterday was Father's Day. So with that information, I asked him what day of the week does Father's Day fall on? He had NO IDEA. I mean NONE! 

I am a person with a great deal of patience, but day in and day out of NOT living a normal life, not having normal conversations and interactions, and not having the freedom to choose what I want to do, is beyond wearing. Of course as always no meal is complete without jumping up and running to the bathroom. As a result of the dementia, my dad really doesn't have an understanding for when he has to go until it is a full blown crisis. He gets worked up about all of this and as a result can stress us all out. 

Sunday, June 19, 2022

Sunday, June 19, 2022

Tonight's picture was taken on Father's Day of 2007. Mattie was 5 years old and that day we had an outing on a DC Boat tour. This was something none of us ever did before, and I thought Mattie would like the concept of a bus transforming into a boat. It was a fun way to see Washington, DC. Mattie particularly liked the duck bill whistles they gave all the passengers. It was actually not the best day for Mattie. After the tour was over, he was agitated and really did not want to go out to lunch. We did go, but I remember not staying long. Of course a year later Mattie was diagnosed with cancer. So upon reflection, I always wondered if Mattie's agitation and moodiness at times were connected to not feeling well. I will never know the answer to this, but I do know that we made the most of all outings and adventures together...... and of course Peter is the best dad.

Quote of the day: They say time heals all wounds, but that presumes the source of the grief is finite. ~ Cassandra Clare

The highlight of my day today was taking Sunny for a walk in our neighborhood. Where we live gives me access to wonderful nature trails. When Sunny first moved here, his energy level was a lot better. Now I have to stop often to give him breaks with water. The chemo is knocking him out on top of his age. The good news however, is that I don't see blood in Sunny's urine. 

I haven't walked Sunny since May. This is just awful, as this was part of our daily routine for the 6 years I have had him. Now most days I don't know if I am coming or going. Fortunately Sunny has a backyard that he loves, but I miss our walks and getting outside. He was my number one reason to get out in all kinds of weather and interact with the world. 

This was one of our water breaks. In the woods there is a lovely bench. Sunny is conditioned now to stop at this bench for some water. 

It was quite a night for us! At 2am, Sunny climbed the steps and came into our bedroom. I listened in hopes he would settle down, but he did not. So I got up and could tell immediately that he wanted to go outside. I woke Peter up and we took Sunny into the backyard with a flashlight. Luckily we did as the chemo gave him diarrhea. What a smart boy to wake me up! But we did not go back to sleep until 4am and then of course I have to get up early for my parents. So I am the walking wounded today. 

My happy boy!