Saturday, May 11, 2024

Saturday, May 11, 2024

Tonight's picture was taken in May of 2009. Mattie was pictured with Tricia, Mattie's favorite HEM/ONC nurse. It was a special day, as hundreds of people came out to the Mattie March, an event hosted by Team Mattie. I will never forget how all of our communities rallied together to support Mattie and my entire family. Practically all of Mattie's care team was at this event, and to this day, Tricia is still part of my journey. She supported me through Mattie's entire cancer journey and her skills, competence, compassion and friendship are gifts I cherish. Want to know what was in the cup Mattie was holding? NOT water, but tent moth caterpillars. A spring time tradition for Mattie... those caterpillars came home with us that day. 

Quote of the day: You can love someone so much, but you can never love people as much as you miss them. ~ John Green

My mom's friends arrived last night around 6pm. They had a 7 hour car ride from New York to Virginia, as traffic was horrible. Given the absolute dysfunction of my life, I truly feel great angst when interacting with people. The couple who was visiting have known me since I was five years old. They have seen me at every stage of my development. Last night over dinner, I explained to them the changes in my life. I think they were shocked to hear my story and frankly I live each day with this total confusion. Things just don't make sense to me. We all stayed up until 11pm talking. Even my dad was awake, at the table, and listening. So the visit was excellent stimulation for him. At the end of the evening, I felt supported. I am not sure I was expecting that, but that was the result. 

This morning, I got up early because I knew our visitors had to get on the road by 10:45am, to attend a family birthday celebration. I wanted to put dishes away from the night before, prep breakfast, get my dad up, washed, dressed, and downstairs so that I could ensure everyone had a nice breakfast and a chance to chat. It worked out well. While we were chatting the door bell rang. My neighbor came over to visit and we all sat down together. About thirty minutes later, my dad's physical therapist showed up. So it was full house. Somehow it added some life and more dimension to my depressing existence. That said, tonight, I am worn out. 

Our friends expressed to me how beautiful my house is. How beautifully I have decorated it, taken care of it, and admired my plantings. They also asked me..... how do I keep the house so clean? They aren't the first people to tell me this! I have always been a clean and organized person, but I think my need for control over something in my life has grown exponentially. Therefore, I clean! 

My mom's friends have been married a long time. It is very clear they love each other and enjoy their time together. You can't think of one without the other. In many ways, I always viewed Peter and I as the younger version of them. I thought my future, after caregiving, was going to look a lot like this couple. Having the freedom to travel, have adventures, and journey through life with Peter. I am not sure how I could have been so wrong, so misguided, and now emotionally and perpetually distraught. 

Friday, May 10, 2024

Friday, May 10, 2024

Tonight's picture was taken in May of 2008. I remember this day like it were yesterday. Mattie came home from school, and because it was a Friday, Peter got off of work early. We walked down to the Washington waterfront, boarded the Matthew Hayes boat, and toured the Potomac River. Mattie LOVED boats, so he was very excited to do this. It wasn't a planned outing, it was more spur of the moment. Maybe that is what made it so memorable. While on the boat, a family offered to take photos of us. This family caught all three of us on camera, which was a rarity! It is hard to believe that two months after this photo was taken, Mattie was diagnosed with cancer. 

Quote of the day: You know you truly love someone when the mere thought of losing them brings you to tears. ~ Unknown

It was another busy day on the Farm! In addition to my usual routine, I am also juggling my mom's friends who are visiting and spending the night. Literally to get ready for a simple dinner, I had to start the day before. Otherwise, with all my tasks, caregiving, and entertaining of my parents, I wouldn't be able to pull this off. 

I bought wild caught halibut today. I love this homemade marinade of caramelized onions, honey, Dijon mustard, olive oil, lemon zest, lemon juice, and fresh herbs. 

I also made a mixed berry cobbler. It is currently in the oven. This is my first time making this. But if it is good, then it will be my go to spring and summer dessert! It was SUPER easy and quick to do. 

Now this was far more labor intensive, because of all the chopping. This is a Mediterranean couscous. It has cucumber, tomatoes, spinach, arugula, mint, and parsley, in a homemade lemon vinaigrette. 

I have to say interacting with people and entertaining are two very difficult things for me to do. I am not myself and so much angst, sadness, and anger are swirling around in my head and heart. It is hard to describe and even harder for others to comprehend my daily existence. 

Thursday, May 9, 2024

Thursday, May 9, 2024

Tonight's picture was taken in May of 2009. I will never forget this day! Mattie's community hosted the Mattie March on his school's track. Hundreds of friends came out that day to support Mattie and us. At that moment in time, we thought that Mattie's treatment was going to wind down and we would then work on his physical rehabilitation. This event was so special that it served as the model for the Foundation's Awareness Walk after Mattie died. Pictured with Mattie were Ariel and Tess. Both of these women were my students at the University and both are very bright, engaging, and thoughtful women. To this day, I am still connected with Ariel and have followed her career of becoming a pediatric nurse! Very proud of her. 

Quote of the day: It takes a minute to like someone, an hour to love someone, but to forget someone takes a lifetime. ~ Unknown

It was another red letter day for me. My plumber came over this morning to replace a tub faucet. I have known Cody since we moved into the house. There were so many things wrong with this house, that we practically had plumbers, electricians, and HVAC people here for months. I am lucky to have this company to turn to because I know when they are telling me something, I can trust what they are suggesting. They aren't up selling me or giving me poor advice. 

Cody knew that I had to leave at a certain time this morning because I had to take my dad to his physical. When Cody arrived, we thought it was going to be a quick visit. That was until the sump pump alarm went off again. I am thrilled Cody was here when this happened because then the issue could be addressed in real time. 

The house has a main sump pump and a secondary one. The secondary pump exists in case the main one dies. Basically it is a security system in a way, because the last thing I want is the basement flooding.... AGAIN! When we first moved in, we had a rain storm and within hours there was about an inch and a half of water taking over the basement. I remember working with Peter for hours sweeping out the water, trying to dry the space and spraying Lysol everywhere. 

Any case, after that ordeal, we installed a back up sump pump. Though the sump pump was installed in 2021, it died! Cody contacted the supplier and the supplier claimed that we did not maintain the pump according to the warranty! News to me! The person who installed this pump (who we complained about and he was eventually fired), never told us about the maintenance required. Basically this pump needs to be filled with water and flushed every three months. In August, Cody is coming back to show me how to do this procedure. 

But to make a long story short, I had to get a new secondary sump pump installed today. Truthfully it is not what I wanted to hear. Especially after installing a new furnace last week. It is like Mr. Blanding's Dream House, expect this is NO dream, and my reality gets worse with each week. 

My dad had a good doctor's visit. He is gaining weight, as he had lost about ten pounds in his previous appointment. The doctor talked to me about helping my dad gain weight and maintain it. Apparently I have been successful. 

After the doctor visit, I drove to the Foundation's mailbox and then we went out to lunch. Lunch or any meal for that matter is challenging. My mom is stuck in a conversation loop of negativity and my dad is out of it. He basically shovels food in his mouth and is oblivious to what is going on around him. It takes great inner strength to keep my mental sanity. 

As soon as I got home this afternoon, I hit the ground running. I had to feed Indie, fold the laundry, unload the dishwasher, vacuum the basement, set up the bedroom, and prep the guest bathroom. My mom's friends are visiting and staying with us tomorrow. So I had a ton to do.

I then started prepping dinner. I prepared a honey-mustard marinade for the fish I am buying tomorrow, I prepped a Mediterranean couscous (labor intensive because of all the chopping of vegetables), cleaned broccoli, and prepped a three berry cobbler. Not to mention then created this rose arrangement from flowers in our garden and set the table. The table truly needs a leave removed, but I don't have the energy or strength to manage this alone. So the table will remain bigger than what is needed. Overall doing all these tasks and working alone, is crushing, as I am constantly hit with waves of reality..... that I am no longer married and frankly I am going through the motions in life, but that is about it. I exist and that is the extent of my life. 

Wednesday, May 8, 2024

Wednesday, May 8, 2024

Tonight's picture was taken in May of 2008. Mattie came home from kindergarten that afternoon, and we took his tent moth caterpillars out on the deck. These fellows had transformed into moths in our jars and it was release day! I have to admit the first time Mattie brought these caterpillars home in preschool, I freaked out! Mind you I could have put these creatures outside and be done with it, but I saw Mattie was intrigued and wanted to learn more. So I turned the gift of caterpillars into a teachable moment and it became a spring tradition together. 

Quote of the day: Love is not about possession. Love is about appreciation. ~ Unknown

This morning I literally herded my parents to the car and drove them to the hospital. They see a rehabilitation physician every four months! I met this doctor in 2022, when my dad was hospitalized for a pacemaker placement. After my dad was in the hospital for a week, he couldn't get out of bed, walk, or do anything independently. They wanted to transfer him to a nursing home for rehab. I pitched a fit because if my dad gets into a facility, he won't be getting out! It was while pitching a fit, I met the doctor I saw today. He was such a God sent that after my dad was discharged from a week of acute rehab at the hospital, I kept both of my parents on as his patients. 

Typically I go to doctor appointments with my parents and NO ONE asks about me. EVER! Today was very different. The doctor's assistant took my parents vitals and got up to speed on their current issues. Before she left the room, she asked how I was! She said that my parents are stable because of the work I do each day, and therefore she wanted me to know this. I almost fell off the chair. 

When the doctor came in, we discussed each parent, one at a time. We started with my mom, who has more going on in comparison to my dad. Make a long story short, he prescribed a TENS unit for her. Transcutaneous electrical nerve stimulation (TENS) uses low-voltage electrical currents to relieve pain. A TENS unit is a small device that delivers the current at or near nerves to block or change perception of pain. We will try the TENS for four months and if that doesn't work, we will move onto trigger point injections. My mom has terrible pain in her neck, shoulders, back, and legs. We think it is muscular related, but we shall see, as she has struggled with this on and off for several years. 

After the doctor was finished with my parents, he then turned to me. Apparently today was..... check on Vicki day! The doctor asked how I was, how I was sleeping, if I am exercising, and how I am taking care of myself! I did not get into my myriad of issues, because that would be a MUCH LARGER conversation. But I explained that caring for myself is hard right now given all I am balancing. I also told him that I sleep only because of the medications my doctor has prescribed to me. People who have been following me over the course of this last year, can see I have lost a lot of weight. This is typically one of the first things doctors mention to me! As if I am NOT aware of my weight. It is hysterical. Any case, the doctor can see the circus show I am balancing between both of my parents, so I am not at all surprised by today's questions! Especially since this doctor knows I have been doing caregiving for not just a week or two, but this December will be three years, non-stop, without a break! What the doctor doesn't know is I no longer have the assistance, care, or support of my husband. 

Later this afternoon, I had my therapy appointment. One of the things we discussed was Mother's Day. This is my first Mother's Day without Peter in my life. I haven't been a fan of Mother's Day since Mattie died, but I always had Peter. Peter was part of my Mattie journey. We shared a lifetime of memories and being together helped me at least keep the life of Mattie fresh, real, and alive. Losing my husband, in a way, is like losing Mattie all over again. Remember Peter and I have been together since I was 19! He has been a significant part of me and my identity. When Mattie died, I struggled with the question... who am I? But here I go again, in yet another crisis, but now I have NO understanding how on earth I got to this place. At least with Mattie, I understood he had cancer and this horrible disease took his life. I did not like it, but there was an explanation. I have no explanations now, but am completely blindsided. 

Tuesday, May 7, 2024

Tuesday, May 7, 2024 -- Mattie died 762 weeks ago today.

Tonight's picture was taken in May of 2008. Mattie was six years old and that weekend we went for a walk on Roosevelt Island. One of Mattie's favorite spring time activities was finding, collecting, and bringing home tent moth caterpillars. We had a whole system of jars to nurture these creatures, which entailed giving them fresh oak leaves daily and cleaning out the debris they left begin for us each day. Mattie learned about the process of metamorphosis through these spring time experiments. Once the moths emerged from their cocoons we had releasing parties on our deck! An event Mattie always enjoyed. 

Quote of the day: We loved with a love that was more than love. ~ Edgar Allan Poe

My plumber came over this morning to evaluate our sump pump. He prepared me by text message how much it could cost if it needed to be replaced. Turns out there is an angel watching over my pump and the pump is fine. The issue is we had some sort of surge in the house that impacted the battery. He tested it and retested it today, ran water outside the house into the drain, and everything worked just fine. The battery is now plugged into it owns dedicated electrical outlet, and we will see if the problem arises again. But the pump also has a back up battery and it was the back up that was working, because the designated power supply was tripped. Bottom line was the sump pump has been working all along and it is now back on its usual power supply rather than the back up battery. One issue addressed for the day. I take all good news when it arises.

My mom has friends coming to visit us on Friday. They are staying with us for one night. That may not sound like a big deal, but it is! On any given day, I am dealing with a three ring circus and it is hard being a one woman show. Nonetheless, I do not want to be the one to deny my mom opportunities to socialize. So I have prepped the guest room, the guest room bathroom, and went grocery shopping this morning so I can begin prepping dinner for Friday on Thursday. 

I admit that I have moments of anxiety that come over me now. They are overwhelming bouts and the one thing I want to do when this happens  is to go outside and walk around. Fortunately there is something to always keep me busy in our front or back yards. 

I happen to love roses, and Peter planted these knock out roses last year. They are simply glorious this year. Last week, I planted all the flower pots for the summer season. 

Shortly after we moved in, Peter also planted iris bulbs. This is the first year, they have actually produced beautiful flowers. 

One of our heirloom roses. I love it because it is a Mattie Miracle color. 

Last week, I planted herbs. I love fresh herbs in the summer time. This year I have basil, parsley, dill, rosemary, oregano and mint! 

What I fell in love with regarding this house, was its property. I must have seen 60 houses, before picking this one. When I was looking at houses, I would share the links to each of the houses with my lifetime friend, Karen. One of the observations Karen made was all of the houses I had seen had NO planned backyards. No plantings, no gardens! She was 100% correct. 

Which is why when I came across this house, it jumped out at me immediately. The property had a planned garden and though we built upon it, the foundation of it was very well done. One of the beautiful parts of this property is it has something blooming throughout the spring and summer seasons. In the spring we have incredible azaleas and rhododendrons.  

One of the things we added to the property since we moved in are roses. This space is what I refer to as my rose garden. I can't tell you how fragrant it is! Soon I will have to get in there and start trimming and shaping things out, but my point is when I feel like I am overwhelmed and I am going to jump out of my skin, I turn to the gardens!

Meanwhile, our box turtles are back in the front yard! 

A baby turtle! Mattie would have loved this sighting. It is a hard reality knowing that he never got to live here and of course that I am now facing a future without both of my boys. 

Monday, May 6, 2024

Monday, May 6, 2024

Tonight's picture was taken in May of 2007. I will never forget this moment in time. It was grandparent's day at Mattie's school. It was a very special occasion, as Mattie's school did a great job at planning this day and made grandparents feel special. The logistics of this operation was amazing and they pulled it off beautifully. I was lucky enough to volunteer at the event, so I got to experience it first hand. Grandparents had breakfast under a large tent on the field, they got to hear a choir concert given by the children, and then got to tour their child's classroom. My mom snapped this photo of Mattie and me together. It was our first and very last grandparent's day. Cancer changed everything. 

Quote of the day: Love is never lost. If not reciprocated, it will flow back and soften and purify the heart. ~ Washington Irving

It was another busy day! I dropped my dad off at his memory care center, then came back home, picked up my mom and took her for her hair and nail appointment in the city. Literally I was moving from one thing to another today and felt stressed out because I had a 4pm call that I needed to be home for. Some how I pulled it all off, but truthfully some days, I just want to scream. I am so over worked and emotionally devastated. 

The hits just keep on coming with unforeseen expenditures in this house. All I know is I truthfully take it one moment and day at a time. It is the only way I can survive, because the bigger picture right it just too much for me to accept. 

Sunday, May 5, 2024

Sunday, May 5, 2024

Tonight's picture was taken in May of 2007. That weekend we took Mattie to the Andrews Air Force Base Show. It was unforgettable. Mattie got to tour around many of the aircraft that were on display and then we got to see the Thunderbirds perform. The sound was thoroughly intense as they were flying through the air and it scared Mattie quite a bit. But overall, it was worth the trip and I am glad we did this adventure together. In fact, with Mattie there were many firsts for me, as the things he was interested in pushed me beyond my comfort zone. I credit Mattie for the person I am today....  for the courage, assertiveness, and tenacity that I developed while being his mom!

Quote of the day: The saddest thing in the world is loving someone who used to love you. ~ Unknown

After a full day of tasks, I took my parents out to brunch. We go out every Sunday to the same restaurant. Our server, text messaged me to let me know she was sick and wouldn't be there today. Typically that would cause me not to go the restaurant if Cheryl wasn't there, but I knew my parents were looking forward to going out, so I made the executive decision that we were going anyway. 

In the past, my dad could walk from the parking lot to the restaurant. He can't do this anymore. His energy level is quite low. So now, I pull the car up in front of the restaurant, I unload everyone and put my hazard lights on. I then take my parents into the restaurant and get them settled before parking the car. When I walked into the restaurant today, one of the managers greeted us. I told her that I knew Cheryl was sick and that she had to give us an attentive server. If not, it will be a bad experience for us and for the server. We worked with a delightful young woman today and she made it a very pleasant meal. Of course no meal is ever without trips the bathroom. It is a routine that I may never get used to or accept. But it is what it is when dealing with Alzheimer's combined with Irritable Bowel Syndrome. 

When we got home after brunch, I tackled changing the garden hose and trying to repair a closet door ball catch. I have just about had it with the old fashioned garden hoses. They are terribly heavy, they kink, they are hard to maneuver, and rolling them back up is a nightmare. So I literally absorbed the TV ad for the Copper Bullet Hose and ordered one. I tried it tonight and WOW, what a big difference. I liked it so much that I now ordered a second one. I will be doing a lot of gardening this summer and the work is hard enough, watering plants shouldn't add to the problem. 

As for the closet ball door catch, I naturally ordered the wrong one! So they have to be returned this week. I then pulled out YouTube and watched a video about how to remove a ball door catch from a door. I did it! I measured it and now ordered the correct part. We shall see when it comes in, whether I can actually install it correctly. 

The final thing I wanted to take on today was changing my gmail account password. I was alerted to suspicious activity on it. The problem with this is I am very leery about technology. It isn't my strong suit and just managing it brings about great anxiety. But I talked to myself and I said, if I can figure out finances, care give for two adults with dementia, fix things around the house that I have never done before, then why on earth can't I figure this out too. So I sat down, tried it, and accomplished that task. 

It has been eight months of self exploration. I have had to dig deep, develop confidence in myself to perform tasks that go beyond my knowledge, skills, and level of comfort. I take it one day and task at a time.