Saturday, July 8, 2023

Saturday, July 8, 2023

Tonight's picture was taken on July 13, 2008. Literally ten days before Mattie was diagnosed with cancer. At that point in time, we were clueless. What a beautiful place to be! Mattie had a loose tooth and he was trying to demonstrate by wiggling his tooth for the camera. What a precious face and Mattie got very excited when a tooth would come loose, because it meant he got to write a note to the tooth fairy. Mattie would write a note, leave it under his pillow, and then make requests of the fairy. He did not want money! Mattie would ask for hotwheel cars and one time he even asked for a necklace made out of uncooked pasta! Don't ask me, but the fairy got used to all sorts of requests coming from Mattie. 

Quote of the day: The trouble with anger is, it gets hold of you. And then you aren’t the master of yourself anymore. Anger is. ~ Jeanne DuPrau

This morning, after doing my usual chores, I awaited my dad's physical therapist to arrive. Once she showed up, I decided to go for a walk with Peter in our neighborhood woods. It is so so hot out, that I figured the woods would be shaded. On an aside, I have developed a horrible heat rash and had it since July 4. It isn't going away or getting better. 

Any case, look at how beautiful this green space is! Despite it's beauty I entered this space quite agitated and angry. I landed up yelling at Peter and then speed walking away from him. Given that Peter just had surgery, there was no way he could follow me. 

Despite the heat, I spent about 90 minutes walking and literally screaming alone. Screaming and talking to myself to be specific. Thankfully no one was around me, because I am quite sure I looked like I was ready to be committed. 

This instability is the direct result of intense caregiving for two people with dementia. It has caused havoc in my personal, professional, and married life. Yet from my parent's lens, their focus is on themselves and their needs. 

It is very frustrating to me, and I am trying to do what I think is best in terms of caring for my parents, but I can see that in the process this has come at a big price. I have no answers tonight, just anger, agitation, and sadness. While sitting down for the first time today, I received an email from a fellow friend, who is also a caregiver to a parent. She explained some of the issues she is confronting and truly her email was a gift. It made me feel less isolated, alone, and definitely made me feel that the issues I am facing now are NOT because of me, but because of the intense and relentless tasks I take on each and every day. Not that knowing this resolves my issues, but there is great comfort in knowing that I am not alone and other caregivers understand the devastating consequences of this role. 

Friday, July 7, 2023

Friday, July 7, 2023

Tonight's photo was taken in July of 2008, weeks before Mattie was diagnosed with cancer. Honestly I would never have guessed that childhood cancer would be in our future. When I look at this photo, it seemed to me that Mattie had his whole life ahead of him and we were going to share in all of his milestones. On the weekends, we always went for nature walks, and I learned at an early age with Mattie, that being outside was where he was the happiest. 

Quote of the day: Prosperity makes friends, adversity tries them. ~ Publilius Syrus

I am happy to report that Peter is doing much better today. He is walking and moving around normally. Yesterday it was very clear that he was achy and had discomfort, as he was walking very gingerly. Peter's incisions look fantastic and it is hard to believe that through these small incisions his hernias could be correct. In so many ways, this points to the miraculous nature of modern medicine. Medicine has come so far, and yet with cancer care, it seems like we are still in the dark ages. 

Though yesterday's surgery was done on an out patient basis and therefore is considered more minor, I was well aware that with any kind of surgery comes risk. That notion is never far from my mind. I knew Peter needed the surgery as his issues were affecting his quality of life, and also if hernias are not addressed, they can become life threatening. Nonetheless, it was an eerie feeling sitting in the day surgery area, a place where we started Mattie's treatment at the hospital. I will never forget this space or our experiences. In some ways all of this comes flooding back to me while there, and on the other hand, this hospital provides me great comfort. How can one hospital provide such mixed emotions???? 

It is a good question, but here's the thing. Other treatment centers recommended that we not fight Mattie's cancer and just move to palliative/end of life care. Not at MedStar Georgetown, they wanted to try all treatment options possible to give Mattie the chance to live. I will never forget that, and that feeling was with me as I anxiously awaited updates on Peter. 

Now that the surgery is behind me, I can focus more closely on those traumatic feelings that arose yesterday, but that I had to keep at bay. It would serve no purpose yesterday if I fell apart, because I wanted to support Peter, and of course, have to manage my parents when I got home. Yet I would be lying if I said that yesterday went fine and without a hitch. I know all too well that with surgery things arise, other problems can be uncovered, and things can also go wrong. When those flutters of panic arose yesterday, I reflected on Mattie, and I truly feel his spirit is alive and well at his hospital. Somehow I felt that Mattie was looking out for his dad, and that notion brought me comfort while sitting in the day surgery waiting room. 

Thursday, July 6, 2023

Thursday, July 6, 2023

Tonight's picture was taken in July of 2009. At that point in time we really thought that our focus was going to be on rehabilitation, in order to help Mattie return to school in the Fall. Honestly what a joke! The reality was about a month later, we learned that Mattie's cancer metastasized  throughout his body. Yet Peter and I tried everything we possibly could to stabilize Mattie's cancer. Mattie's physical therapist, Anna, was a God sent. An outstanding person and professional and she was part of our journey every step of the way. What I love about this photo is you can see the negotiation going on between Mattie and Anna! 

Quote of the day: Do not pray for an easy life, pray for the strength to endure a difficult one. ~ Bruce Lee

It was a true three ring circus this morning. Poor Peter was up at 3am. He took an Uber to the hospital and he checked into day surgery at 6am. I truly wanted to go with him, but Peter was correct! There was NO WAY I could do this given all that I have to balance in any given day. Peter snapped this photo of himself in front of Georgetown Hospital. A PLACE WE KNOW ALL TOO WELL. This is Mattie's hospital, where he was treated and died. This hospital, in my opinion, holds Mattie's memory and spirit. So I knew Mattie was looking out for Peter today. 

Peter in the pre-op area! All of Peter's nurses were impressed with his can do attitude today. 
I dropped my dad off at his memory care center at 9am. I got on the road to the hospital after that drop off. At 9:45, my phone rang, and it was Peter's surgeon. Peter was in surgery for 90 minutes and the surgeon filled me on the success of the double hernia procedure. When a surgeon says that 'everything went as expected and there were no surprises,' that translates into.... the surgery was a success. I really appreciated this call because once I got to the hospital, I found out that with COVID policies have changed and family members are NO LONGER able to meet the patient in the recovery units. I wasn't happy. Thankfully I knew Peter was out of surgery and it went well because the electronic board which is supposed to update family members was far from helpful. It did not provide information in real time!

Before entering the hospital, I visited Mattie's memorial paver. This is a tradition with me.

When I entered the hospital, I had to go through a check in process. The woman I was interacting with was trying to tell me how to get to day surgery! She was irritating me because she wasn't listening to me. I know this hospital as if it were my second home. 

After I managed my way through this woman, I then visited the Children's Art Gallery on the way to the elevators to Day Surgery. 

Mattie's story and my collage are still on display! Keep in mind that we created these items in March of 2009! All these years later, they remain and are right next to each other. To me this is a piece of Mattie alive and well in the Art Gallery!

Peter streamlined himself through recovery! His nurse, Sade, was lovely and she had Peter's number! She brought him to my car and you can see even off of general anesthesia Peter looked perky! I am so glad Peter is home now and recovering. 

Our friends Ilona and Attila visited with my mom today and they brought these beautiful sunflowers and hand painted cards. Ilona is an artist and she knows how much I LOVE the sunflower. I am grateful that today is behind us and that with help, we were able to juggle it all. 

Wednesday, July 5, 2023

Wednesday, July 5, 2023

Tonight's picture was taken in July of 2009. It was Brandon's 19th birthday, and Mattie and Jocelyn were there to celebrate their friend with an ice cream party. It is hard to believe that both Mattie and Jocelyn both lost their lives to osteosarcoma. Though Brandon and Jocelyn were older than Mattie, age did not matter. These three connected and supported each other in a very special way. It is something I will never forget!

Quote of the day: With the new day comes new strength and new thoughts. ~ Eleanor Roosevelt

It was another full day on the farm. The usual routine is wearing. That's the best I can say. Some days I wake up and I wonder whether I will make it through the day. Of course seeing all that I do for my parents, I ponder, when I get older..... who will be doing this for me?! In all reality one can have children, but not every child will take on the burdens of caregiving. So having children is no guarantee. Not everyone is cut out for this role, and for good reason. 

After dropping my dad off at his memory care center, I took my mom to the hospital for physical therapy. The therapist is well aware of my mom's memory issues and during the next session, the therapist wants my mom to run through ALL the exercises she is doing at home. In fact next week's whole session, 45 minutes, will be devoted to this! That caused me today to come home and evaluate exactly what my mom is doing! I have assembled a notebook of all the exercises this therapist has given my mom. But like I suspected, my mom isn't using it and isn't doing most of these exercises. Instead, her brain is stuck on the former exercises she learned in California. Though that is fine, this defeats the purpose of her current therapy plan. 

So over the next week, I will have to sit with my mom and make sure she is doing the correct exercises, because I could see how this would play out next week. If my mom entered the session and went through her routine with the therapist, and if the routine did not include any of her current exercises, I would imagine this would cause the therapist to think twice about suggesting more therapy. After all what would be the point? I do not want this to happen, as I feel like my mom needs this professional support, so on top of managing my dad's full time care, I now have to also add in doing therapy with my mom. That is of course on top of all the other support I provide my mom. 

This evening while juggling several other things, I made dinner. Peter is growing beets in our garden. So tonight, I steamed the beets and made a beet and orange salad with fresh mint and parsley from our garden. It was delicious!

Tomorrow, Thursday, Peter undergoes surgery. He has to be at the hospital at 6am. Though I wanted to take him to the hospital, he is going on his own, and after I drop my dad off at the memory care center, I will head to the hospital. My friends, who also lost their only child to cancer, are graciously coming over to have lunch with my mom and keep her company. I am very grateful for the support. Think good thoughts for Peter tomorrow for a successful surgery and quick recovery time.

Tuesday, July 4, 2023

Tuesday, July 4, 2023 -- Mattie died 718 weeks ago today.

Tonight's picture was taken on July 4, 2008. Literally weeks before Mattie was diagnosed with cancer. That day we took him to the DC Aquatic Gardens. This is a hidden gem in Washington, DC and its claim to fame are the priceless water lilies and lotuses. The lotuses bloom around the fourth of July and it is a magical time in the Gardens. Notice along this journey, Mattie was holding a toy car in his left hand. Not an unusual sighting! 

Quote of the day: Anyone can give up; it is the easiest thing in the world to do. But to hold it together when everyone would expect you to fall apart, now that is true strength. ~ Chris Bradford

Given that it is Independence Day, I decided to invite my friend Ann and her husband over. Though I find my daily routine beyond exhausting, I thought it was make the day more festive if we did something different. We started the day outside by the pool. 

I got both of my parents outside today for a little bit of time. When I bought this house, my hope was that my parents would enjoy this beautiful space. Unfortunately they rarely go outside. 

Though I typically don't go in the pool, Ann convinced me to go in with her and Peter.
Despite putting on sunscreen, tonight I am burnt red like a beet. It seems to be a reminder to me..... when I do something fun, I am going to pay a price. It is a sad commentary, but that is how I feel!

While in the pool, it was wonderful. Especially since it is very hot and humid outside. Once I got out of the pool, I felt like I had a good exercise and also felt less stressed. 

Me and Peter! We have lived in this house two years now, and I think this is actually the second time I have gotten in this pool. 

Our kitchen has a big island and it makes for the perfect location to set up a buffet. 

I made a corn and tomato salad, string beans with lemon zest and mint, and a tomato, cucumber, and mozzarella salad. The nice part about this was most of the items either came from our garden or our local farmer's market. 

Shrimp and Vegetable kabob! They came out GREAT!

Monday, July 3, 2023

Monday, July 3, 2023

Tonight's picture was taken on July 4th weekend in 2009. We worked hard to make this local trip away happen. We had to get the okay from Mattie's oncologist, because by that point Mattie's physical and emotional health were fragile. We went with a group of friends. As you can see, Mattie did not want his photo taken. This was a very difficult trip. Mattie may have been calm and cordial when others were around, but Mattie needed several breaks away from people and when we were with him alone in the hotel room, he literally had one meltdown after the other. It was just too hard for him to see other kids healthy, able to walk, and have fun. Whereas, he was confined to a wheelchair, bald, had a low energy level, and basically felt ill. In other words, Mattie didn't see himself as a child but as a child who had cancer.  I can still recall how I felt that weekend absorbing Mattie's feelings, how hurt he was, and how depressed I felt.

 

Quote of the day: Hard times arouse an instinctive desire for authenticity. ~ Coco Chanel

In preparation for our July 4th BBQ, I started putting platters of things together. To me watermelon is an Independence Day tradition. In any case, this is a fruit my dad LOVES, so needless to say it was definitely going to be on the menu. 

I spent two hours this morning cleaning fresh shrimp. I had to pull off shells, legs, and devein them! What a labor. My goal is to make shrimp skewers tomorrow. So I pre-cooked mushrooms and peppers (to help them cook through better when grilled) and them are marinading overnight, in a separate bag from the shrimp. Here is the recipe!

Meanwhile, our pool had an issue and the only way to fix it was with a scuba guy. Evan came over today and was giving us a thumbs up from under the water. I am telling you, some days I think I run a three ring circus. 

After several hours of food prep, I took my parents out to eat! What an ordeal. My dad had to go to the bathroom twice, and the last time was a disaster. I did not get him there soon enough and he pooped all over himself, his clothes, the bathroom floor, the toilet, etc! Fortunately I come armed with a tote bag filled with things to manage my dad and his situation. But I assure you, when already tired, coping with my dad's irritable bowel syndrome on top of dementia is a diabolical combination. 

I end tonight's posting with the first rubrum lily bloom of the season! It is gigantic! 

Sunday, July 2, 2023

Sunday, July 2, 2023

Tonight's picture was taken in July of 2003. Mattie was 15 months old and beginning to walk independently. That was his first trip to the beach and as you can see, we weren't actually on the beach. Mattie preferred playing on the deck and working with the hose! One thing was for sure, the house had the cleanest  deck after Mattie stayed there for a week. On that trip, we made it onto the beach only once. That was more than enough for Mattie, as the sand and surf scared him. We followed Mattie's lead and thankfully we selected a house right on the water, so we could at least see and hear the Atlantic Ocean. 

Quote of the day: Strong people alone know how to organize their suffering so as to bear only the most necessary pain. ~ Emil Dorian

This morning did not go at all as I had expected. I wish I could say this is an unusual occurrence in this house, but unfortunately it is not! After doing my usual routine, I got my dad downstairs, gave him a haircut and then served him breakfast. I was supposed to take my parents out to brunch today, at the restaurant we visit every Sunday. However, our server, Cheryl, text messaged me to let me know she wasn't going to work today, as she was getting ready for her family trip to the beach. I knew Cheryl was going away, but originally she was scheduled to work the brunch shift. In any case, it is my tradition, that when Cheryl goes away with her sisters, I give her a card and a monetary gift. She takes such good care of us, that I try to go the extra mile and reciprocate the best I can. 

Given she wasn't going to work, I wouldn't be able to give her the card and the gift. I wasn't going to have that. So I told her that I was going to drive out and meet up with her, in order to give her the card. Understand that this means a 30 minute drive to Cheryl, and a 30 minute drive home. I am not sure most people would take this on, in addition to the other things I am balancing, but no matter how tired and overwhelmed I am, I try to think of others first. That is a quality that defines me, with or without caregiving. 

However, before I could jump in the car and go, my neighbor and her children came over. One of her children turned 7 years old today and Peter got the little boy a few gifts from us. Raising young children is a subject I am quite familiar with and naturally it is hard to look at this little boy and not think of Mattie. For me, Mattie will be forever 7. No matter how much time lapses, I still get angry that Mattie did not get to have more than 7 years on this earth. Others take for granted the fact that their children are alive and can celebrate birthdays! What I have learned unfortunately is that childhood birthdays are NOT a given, and there are no guarantees that a once healthy child will get diagnosed in the future with a catastrophic disease. What a horrible and cynical way to look at the world! Yet this is my lens. 

Happy and milestone events that others celebrate, I instead look at them in quite the opposite way. Weddings, pregnancies, births, birthdays, graduations, holy communions, confirmations, etc..... all of them make me sad. Sad because I remember moments of great happiness for example giving birth to Mattie, but then of course six years later, hearing the words no parents wants to hear.... your child has cancer, changed everything for me. So a happy and joyous event is attached to devastation and life altering experiences and great loss. Mattie has been gone for 14 years, and you would hope that by now I would have made more progress. I suppose I can live in hope, but for now, I accept that I have these insights, intense feelings, and for the most part try to keep them in check when interacting with others. Emphasis on try, as I am not always successful.