Saturday, December 10, 2022

Saturday, December 10, 2022

Tonight's picture was taken in December of 2003. That holiday season we took Mattie to Los Angeles. Along our adventures we went to Griffith Park and introduced Mattie to the ponies. Mattie was seat belted to the saddle and Peter walked besides him. Look at that big smile!!! To me it was priceless.

Quote of the day: I have a theory that selflessness and bravery aren’t all that different. ~ Veronica Roth

On Friday night, after a very long week, I could see my dad was sleeping in his recliner. So at 8:30pm, I took him upstairs and got him ready for bed. I know that the longer I keep him up the harder it is for me to get him upstairs. Therefore, I made the decision over this passed week to take him up before 9pm, otherwise I can't get him up. 

After my dad was in bed, I came back downstairs and Peter and my mom eventually joined me and together we watched a Hallmark movie, Time for Him to Come Home For Christmas. I had seen it the night before, and thought it was well done and I wanted Peter to see it. Once the movie was over it was about 11pm. When my mom came upstairs and went into their bedroom, I could hear that my dad was still up and talking up a storm with my mom. 

This morning, I asked my mom why my dad was up last night! She let me know that he was upset that I brought him up early and that we watched a movie together without him. Certainly in my professional capacity I could sit back and be empathetic about his complaint. However, I am human and managing the impossible for ONE YEAR straight without a break. So I did not take to any of this well. Instead, I explained to both of my parents, that there is a reason I take my dad up early, and that I am doing the best I possibly can to manage both of their needs, desires, and requests, but if I don't get a break and just be for a few minutes without the toll of caregiving, I won't be able to keep this pace up. Of course I might as well be talking to myself, because neither one can be rational. 

Sometimes I feel like I am so trapped and could explode with anger and other emotions. My diversion is Hallmark. I turned to Hallmark movies after Mattie died. In fact, I would watch them from morning to night. Now of course I don't have the time. But after my parents go to bed, I watch Hallmark movies from my bed. It is my escape from the harsh reality that I face. What caught my attention about Time for Him to Come Home for Christmas, was it was about loss, trauma, and finding one's way back in the world. I could tell that the main characters were traumatized from a loss within minutes of watching. I recognized that tell tale sign, of pushing away from others and needing isolation. 

If you are a Hallmark fan, I encourage you to check out this movie trailer:

https://www.hallmarkmoviesandmysteries.com/time-for-him-to-come-home-for-christmas/videos/preview-time-for-him-to-come-home-for-christmas

Within the movie is a haunting song called Peace, Joy, Love! I had NEVER heard it before, so I naturally Googled it! It turns out it was written by Jim Brickman who joined forces to spread a heartening message of unity amid Ukraine's ongoing war with Russia. Here is the link (Peace, Joy, Love) about the song, as well as the official video. 

In the movie, the song was played during a memorial celebration. It captured my attention, as I hope it does yours. There are many morals to this movie, but ultimately I think what I took away from it is two things: 1) guilt is very common when facing a tragic loss and it takes time to process and cope with that guilt of being left behind, and 2) the importance of communicating honestly with others about one's needs, feelings, and request for support. It may appear that Hallmark movies are fluffy and light, but what I love about them are the moral messages and feelings they evoke. 

Friday, December 9, 2022

Friday, December 9, 2022

Tonight's picture was taken in December of 2003. By this point in Mattie's development, he loved the bathtub. So much so that even when it wasn't bath time, he wanted to sit there and play. If you look closely though you will see Mattie had red eyes and his nose was dripping. I can't remember exactly what was going on, but it was possible Mattie was having a tantrum. Mattie's tantrums were overwhelming physically and emotionally and when I was exacerbated, I would put him in the tub. Let him regroup, while I sat on the floor watching him and trying to calm down. Needless to say, we learned a lot about each other and through the tough times, we grew incredibly close. 

Quote of the day: Grief can be the garden of compassion. If you keep your heart open through everything, your pain can become your greatest ally in your life’s search for love and wisdom. ~ Rumi 

It was another ridiculous morning. I got up at 6am because I knew the HVAC folks were coming around 8am. Which meant that the water was going to be turned off for them to work, and I had to get breakfast made and my dad up and showered before any of this happened. Literally I was running around like a chicken without a head this morning, moving rapidly to get things done. Mind you I am tired beyond belief and had a six hour stint in the hospital yesterday while my mom underwent testing. 

Peter got my dad to the memory care center and during the four hours he was gone, I put together a December newsletter for the Foundation and completed two hours of continuing education credits. I have only ONE more to go! Totally amazing, no? I was dead set on getting 40 hours if it killed me. 

In the middle of all the activity, Sunny's mobile groomer came to the house. This is NOT one of Sunny's favorite activities, but it is very important, especially now that he is on chemotherapy. He gets washed and cut monthly and Courtney even gave Sunny a Christmas bandana. Peter took Sunny to the garden center later today and I hear all the women stopped and wanted to pet and get to know Sunny. The power of the Sunman!!! I can't think of a better and more loyal companion. I feel guilty that I can't spend the same amount of time I once did with him, because at one time we were inseparable. Now I can hardly care for myself. 

When my dad came home from the memory care center, I took my parents out to eat in Rockville, MD. My dad gets along splendidly with Dawn, a server we have known for over a year now. She understands his memory issues and peppers him enough to keep him engaged at the table. She is worth her weight in gold for doing just that. On the way to the restaurant, I shared with my dad that my mom's test results from yesterday came in. My mom doesn't have Parkinson's or any movement disorder disease like Parkinson's. Of course this is great news, but I admit, I am FRUSTRATED as there is no physical data or explanation for her symptoms. But I know she has PLENTY of them. 

In any case, my dad was upset that we withheld this information from him. He thought we learned about the results in the morning and did not tell him until 3pm. Which was NOT true. I read the scan report in my mom's medical portal only minutes before we got in the car. Despite trying to reason with him, he couldn't get it. He kept shaking his head. I finally was able to get through to him but it took several attempts, which only further wiped me out. 

Thursday, December 8, 2022

Thursday, December 8, 2022

Tonight's picture was taken in December of 2003. Mattie was in Los Angeles, to celebrate Christmas with my parents. That day we took Mattie to Travel Town in Griffith Park. This was quite a place, filled with old and historic trains. Children of all ages can explore on and off the trains, and also walk the tracks. Mattie was a big train fan, so Travel Town was always a highlight for us. Ironically prior to having Mattie, I never visited Travel Town before. 

Quote of the day: This was how to help a family who has just lost their child. Wash the clothes, make soup. Don’t ask them what they need, bring them what they need. Keep them warm. Listen to them rant, and cry, and tell their story over and over. ~ Ann Hood

It was a very long day today! I got up at 5:30am and after doing my usual morning chores, I got my mom in the car at 8:30am and we headed to the hospital. The commute to the hospital was easy, but I knew as soon as I got onto Georgetown's campus, parking would be a show! Because the hospital is undergoing construction, one of the parking lots is closed and therefore patients must valet park. The valets were working very hard and despite the number of people transcending on them, they managed the flow quite well. 

We got upstairs to the nuclear medicine department and there we spent about six hours. The DaT scan is long! It starts by drinking a solution of water and iodine. This is to protect the thyroid from radiation. My mom was anxious and a bundle of nerves. Her anxiousness comes out as snappy, rude, and overwhelming. Fortunately for her, I stuck by her side and helped the techs working with her. My mom drank this solution and then had to wait 60 minutes. After that point, she was injected with a radiotracer. Once that happened, we had to wait three hours before she could get scanned. The scan itself took 30 minutes, which isn't bad, but I assure you by that point in the day, my mom was tired and not happy about taking the test. In fact, my mom doesn't perceive herself as having any issues and truly resented taking the test. So again, I explained why we needed to do this because I plainly told her she lacks insight into her own situation. 

It is hard to believe we were at the hospital from 9am to 3:30pm. During that time, the head of child life came to visit us and we even saw the former nurse manager of the PICU (where Mattie spent many months). This is the thing about Georgetown, to me the hallways HOLD so many Mattie memories. In fact, where my mom was today was a place I knew all too well. This was where Mattie received all of his bone scans. I saw the room Mattie typically was in for his scans and for that one moment, I was transported back to 2008 and 2009!

Info about the DaTscan:

DaTscan is the trade name for Ioflupane I-123, which is a radiotracer used in a nuclear medicine imaging test called brain SPECT. DaTscan binds to the presynaptic dopamine active transporter (DAT) on neurons that communicate with areas controlling movement, including the striatum. The hallmark of Parkinson’s disease is the loss of these neurons and a decrease in dopamine; when these neurons die, there are fewer dopamine transporters, leading to decreased activity on the brain scan.

For the classic motor symptoms of Parkinson’s to be present, typically 50% or more of these neurons must be lost. DaTscan is able to detect this decreased activity early in the course of Parkinson’s, when the diagnosis may still be uncertain.

Differentiating between Parkinson’s and essential tremor – in an individual whose sole symptom is tremor, it can be difficult to make a definitive diagnosis. DAT scans are abnormal in patients with Parkinson’s, but normal in patients with essential tremor.

This is what the scanner looked like. It isn't enclosed like a MRI, yet the scanner revolves around your head and sits pretty close to your face. 

See it revolving?! It is 10pm, and I am calling it quits. It was a super long day and thankfully while I was managing my mom, Peter was managing my dad.

Wednesday, December 7, 2022

Wednesday, December 7, 2022

Tonight's picture was taken in December of 2003. Mattie was a year and a half old and in Los Angeles for the Christmas season. The hysterical part of Mattie, and probably most children, was he was more fascinated by the boxes and wrapping than the actual gifts. I just love how this photo captured Mattie studying this piece of wrapping paper. Looking back at this moment in time in our lives and I would never have guessed Mattie would be diagnosed with cancer and die at age seven. 

Quote of the day: We may also find meaning in life even when confronted with a hopeless situation, when facing a fate that cannot be changed. ~ Viktor Emil Frankl

After my dad went to the memory care center this morning, we took my mom to our local nursery to look at Christmas trees and other decorations. Peter and I happen to love this place, my mom went along, but I could tell she wasn't interested. This of course impacts me and truly I would just like even an hour to do something without worrying about someone else's feelings! The nursery had a parking lot filled with trees!

The inside area of the nursery is equally lovely! Look at all these poinsettias! The greenhouse is kept warm, which is a lovely feeling to walk into on a cold day!

The nursery also has a gift shop area which was decked out with all sorts of trees, ornaments, and holiday décor. I think it is fun to see all of this and typically it would put me in a better mood. 

This morning, Peter dropped Sunny off at the cancer center, because he had a follow up ultrasound to determine how he is doing on chemotherapy. I had my phone off of the silent mode all day because I did not want to miss the vet's call. However, I took my mom for tea and while out I did not check my phone, nor did I hear it ring. The vet called me three times. When I got home at 4pm, I was angry at myself for missing all these calls and being disconnected. I am angry and at the same time I have got to cut myself some slack because I am balancing way too much. In any case, the sad news is that Sunny isn't responding to this chemotherapy, and the tumors in his spleen, adrenal glands and bladder are growing. Not what we wanted to hear and frankly I am not sure how much more I can handle now. We discussed the plan with the vet and we will begin Sunny on a new chemo this week. There is no telling how Sunny will respond to it, as the first chemo we started him on in April was a disaster. Sunny had no quality of life. So in July we changed chemotherapy meds. Sunny seemed to be responding to this second drug, but several months later we now find that he is no longer responding and instead tumors are increasing in size. The trick is to find a drug that Sunny can tolerate and that keeps his tumor growth stable. We haven't found such a drug yet, but of course I keep hoping that one is out there. 

Meanwhile tomorrow I am getting up at 5am, so I can get myself together, make breakfast, get my dad up, and then take my mom to the hospital for her five hour test. My mom is NOT a good patient at all. She gets nervous, anxious and works herself up easily. So I know this whole experience will be worse for me than for her. 

Tuesday, December 6, 2022

Tuesday, December 6, 2022 -- Mattie died 688 weeks ago today. 

Tonight's picture was taken in December of 2003. Mattie was a year and half old and FULLY ON! Taking him to Los Angeles was never easy, because Mattie did not adjust to the time change easily. Instead, he would wake up at 4am each day, and it took him about 4 days to adjust to California being three hours behind Washington, DC. As you can see, Mattie was intrigued by sinks and water and I practically had to hold him back in order for Peter to snap this photo! 

Quote of the day: They may forget what you said, but they will never forget how you made them feel. ~ Carl W. Buechner.

Well I would say today wasn't my finest hour. I woke up early as usual, got myself showered and dressed, made breakfast and vacuumed part of the house. I then got my dad up, washed, dressed and downstairs for breakfast. What you may not know is I balance three things for my dad each day to help him orient his day. One is a calendar, the second is a white board with the day's schedule and word of the day, and the third is his journal. The journal is designed for him to answer the same questions each day, and the goal is for him to fill it out so he can turn to it when he has questions or can't recall something. In theory all these tools are great! That is if he actually used them. 

The one doing all the work is me and what sent me over the edge today was my dad's lack of interest in just about everything. He isn't motivated to do anything that involves using his brain or moving his body. If I left him in his chair all day to sleep, that would make him the happiest. After helping him complete today's journal for morning activities, we then asked him a question, which required him to go back to the month of August. He couldn't do it or did not want to do it. That was the straw that broke the camel's back. I took the book away from him and I decided not to do any of his daily brain games. As Peter says to me..... he would have stopped all of this months ago, because my dad gets nothing from it. Peter is correct, my dad gets no visual benefit from doing these activities. The reason I continue with them is for structure, a schedule, and something to engage him even if it is for a few minutes. 

In addition to all of this, while having breakfast, before any journaling took place, my dad pooped in his pants. A delight at the breakfast table and though I get up in the 6am hour, I rarely get to eat before 10am. I had just sat down to eat, when I had to jump up again to get my dad to the bathroom to completely clean and change him. Remember I just showered him less than an hour before this point. 

I am doing the impossible for both my dad and mom, and my dad shows absolutely no interest to do anything. Which means that I can't do anything either. I am tied to the house, unable to plan anything, get away, or have a moment to myself. One could do a research study as me as the subject, to assess how long it takes before a caregiver completely cracks up! 

Later today, a personal trainer came to the house to evaluate my dad. She is a physical therapy assistant by training and the goal is to have her company help to maintain my dad's strengths and abilities. These abilities are what keep him living in our home and not an institution. My dad wasn't thrilled by the notion that he will have a personal trainer, but I have explained to him the importance of these exercises on both his physical and cognitive abilities. 

So overall, I would say today was a day I was angry. Angry at my situation, angry about my life, and just plain ANGRY.

Monday, December 5, 2022

Monday, December 5, 2022

Tonight's picture was taken in December of 2003. Mattie was a year and a half old and he was in Los Angeles visiting my parents for the holidays. As you can see, Mattie was multi-tasking, watching a TV show and playing with my dad. That was Mattie! He rarely sat still and ironically he could concentrate on many things at once, and actually be listening. 

Quote of the day: Don’t worry about the world coming to an end today. It’s already tomorrow in Australia. ~ Charles Schulz

Look at this fellow! This is a new location for Sunny to be hanging out. In the ivy by the garden fountain. I figure it is a strategic place to scan the entire backyard for fox, deer, or other critters. 

I bought a ham hock at the farmer's market and decided to make split pea soup for dinner tonight. Guess who wanted to taste the ham? Sunny of course!

I have three more continuing education credits to obtain before I can renew my license. You would think how difficult could that be? Well in this house, close to impossible. Which is why I had to really push over Thanksgiving at night, otherwise, I can make NO headway during the day light hours. 

I had hopes to do an hour of credits today! It never happened. Instead, I had to deal with phone calls and paperwork for my mom's five hour testing procedure on Thursday. She is already getting anxious about it, and for 5 hours, I will need to manage her while at the hospital. Thursday should be hellish. 

This afternoon, when I got back from taking my mom out, Peter and I went for a walk with Sunny. That was the highlight of my day. While walking, we spotted Mattie Moon!

Peter assembled this Christmas carousel. This carousel was his grandmother's. She bought it over 60 years ago, and she eventually gifted it to Peter's mom. I remember it at Peter's parents house every Christmas. Now the tradition has made it to our house. Peter worked on regluing it and getting its parts working again. I ordered candles for it and it is the flame from the candles that cause the fan on top to turn, which then revolves everything inside the carousel. 

Sunday, December 4, 2022

Sunday, December 4, 2022

Tonight's picture was taken in December of 2002. Mattie was 8 months old and desperately trying to walk. Mattie showed no interest in crawling, in fact if I put him in a crawling position, he would correct himself and sit. All I knew was Mattie had strong little legs and he was determined and insistent that I hold his hands so he could walk around and explore the world around him. 

Quote of the day: And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure whether the storm is really over. But one thing is certain: when you come out of the storm, you won’t be the same person who walked in. That’s what the storm’s all about. ~ Haruki Murkami

After my usual morning routine, Peter and I started decorating inside the house. We are making great progress, and really it is amazing that we can decorate at all, since we are out of practice. We haven't taken out one Christmas item since Mattie died, and it wasn't until last year when my parents moved in, that we resurrected Christmas in our home. 

When Peter and I used to visit his parents in Boston around Christmas time, Peter's mom would take out this stained glassed tree and put it in our bedroom to celebrate the season. In addition, their relatives from England sent them miniature cottages at Christmas time. I have now inherited the cottages and the stained glassed tree. 

For me this is a bittersweet display, because I remember these items when I was much younger, when I did not know about childhood cancer, and when I was able to leave my house and visit family and celebrate the season. With all that said, I am honored to have these pieces as they remind me of happier times. 

I love this little shelf above our front door. We try to decorate it to reflect the season. Today we put up a bough of pine and Christmas tree candles. 

Several years ago, I made this wreath for my parents in Los Angeles. Now it is on our door! 

The kitchen has this cute niche. It is another place that I decorate according to the season. 

Pops of red everywhere! Red is a color Mattie and I both LOVE! We plan on getting a tree this coming week, so more decorating to come.