Saturday, October 19, 2024

Saturday, October 19, 2024

Tonight's picture was taken in October of 2007. Mattie was five years old and that day we took him to Glen Echo Park in Maryland. We saw a puppet show, which Mattie absolutely LOVED, and then we went for a ride on the Dentzel carousel. Look at that smile. With Mattie there were always adventures and even the mundane was special with Mattie. He just had an infectious energy and you just couldn't help but get sucked up into his antics. He is missed today and always. 

Quote of the day: Love isn’t there to make us happy. I believe it exists to show us how much we can endure. ~ Hermann Hesse

Why am I showing you lemon Jell-o? Anyone who has ever taken a colonoscopy knows that this is one of the foods of choice. On Sunday, I will be enduring colonoscopy prep, for my procedure on Monday. 

My last colonoscopy was five years ago, on Halloween no less. Peter of course took me, stayed with me, and then we went out to lunch after the procedure. Of course the procedure is easy, it is the prep that is sickening. Needless to say, my Zofran is out and ready for tomorrow, because the taste of that fluid can easily trigger a migraine and nausea. Of course the big different between this year and five years ago, is my intense caregiving schedule and getting divorced. These are huge stressors, which do not bode well with the environment one needs to prep. But like everything else, I have no choice, and will endure, because like every other day in my existence, I do it ALONE. 

My dad's physical therapist came over today. I really like Cassidy, she gets my dad up and moving, and has great energy. I was focused on completing two Foundation tasks today..... 1. finalizing our fundraising application for Virginia (something we have to file annually as a non-profit) and 2. create our Foundation Holiday letter, so that I can get it to the printing company next week. 

In order to get ready to assemble our mass mailing in December, I find it is a big undertaking. I ordered envelopes, had Mattie Miracle post-it notes made, went to the post office to buy 400 stamps, and got postal bins in order to organize the letters once they are stuffed, sealed, and stamped. This may not sound like a lot, but there are many moving pieces, and this was something I always did with Peter. Everything is easier with a partner. In 2023, it was the first year I managed the mailing alone. You would think it would be easier this year, it is NOT! I think in 2023, I thought Peter would return to the house and that his leaving was temporary. It was a hard year of realizing this was simply magical thinking on my behalf, and that our marriage meant something to both of us. 

Now I have to turn to our supporter database. Each December I evaluate it and update mailing labels. The mailing label part is not something I love to do, as it involves a computer. But last year, Peter did not help me, so I had to turn to Google, watch you tube videos, and figured out how to convert an excel spreadsheet into mailing labels. I can hear my therapist in my head.... "look how much you have grown and accomplished alone." I can also hear my response to her in my head.... "BIG DEAL!"

Tomorrow in between dealing with colonoscopy prep, my goal is to work on the Foundation's October newsletter. My list of things I am trying to do this month just keep adding up. Nothing I can do about it, other than take it one task and nightmare at a time.  

Friday, October 18, 2024

Friday, October 18, 2024

Tonight's picture was taken in October of 2007. Mattie was five years old and he was invited to his preschool friend's Halloween party. Though Mattie was attending kindergarten that year, he still remained close to a handful of preschool buddies. At the party, they played a mummy game with toilet paper. There were two different teams and they were timed as to which team could create the fastest mummy. Guess who was the mummy on Mattie's team? YES that would have been me under all that toilet paper. I remember that party like it were yesterday! 

Quote of the day: Even though you may want to move forward in your life, you may have one foot on the brakes. In order to be free, we must learn how to let go. Release the hurt. Release the fear. Refuse to entertain your old pain. The energy it takes to hang onto the past is holding you back from a new life. What is it you would let go of today? ~ Mary Manin Morrissey

This quote sounds like something my therapist would say! I truly think that some people do not understand trauma and the SLOW process of coping with it. Anyone who knows me well, knows that I do not like change and I most definitely do not walk away from something that makes no sense to me. If I had to let go of something, then I would like to let go of having this kind of life! It is absolutely draining to wake up and manage my caregiving routine alone and to be going through a divorce. At this point I rather walk on hot coals. 

It was another 5:30am rising for me today. Every so often I have Blanca come over and help me clean. Blanca and I go way back, as my neighbor in the city introduced her to me in 2008, after Mattie was diagnosed with cancer. So Blanca knew Mattie and followed our journey. She is now following my next traumatic loss and like me, she can't get over it! I tried not telling her for the longest time, as I initially told her that Peter was on travel. But after about three months, I told her. She started crying, and her reaction was..... "you lost so much already and you survived it together!" Very astute comment. 

In addition to Blanca, I was managing the winterization of our pool and our second floor heating system not working again! If you have been following along on the blog, then you know I am in a panic about this furnace, because there is no way I can replace it right now. Yet I have two 89 year old's who require a lot of heat! So today was stressful for me on every level. 

I have befriended my HVAC person. Mason is a delight and today he gave me his cell phone number. So now I can independently contact my plumber, electrician and HVAC person. They work for a large company, but there is nothing like reaching out to your tech directly. Mason has been helping me with the second floor furnace for a month now. Fortunately the system is working and the issue is not the equipment. So now we think the thermostat itself is wanky. We got it working and hopefully I can manage this if the problem arises again. What I do know is every tech who comes into my house, quickly assesses that I am balancing the impossible. I am always fascinated by what people observe! 

Later this afternoon, I found a large box in my mailbox. Within it was a blood pressure machine and pulse ox. About a week ago, I was contacted by a company who told me that my parent's doctor recommended that they get signed up for this program. The program is paid for by Medicare. Isn't Medicare all heart?! Any case, this blood pressure cuff and pulse ox, are connected to a recording device that sends messages to my parent's doctor in real time. When I spoke to this person on the phone last week, I asked a lot of questions because I told him that I had no intention of using this machine on a regular basis. That I did not want my home to be a hospital, and therefore I want to determine when and if I use the machine. He responded that this would NOT be a problem. So I signed my parents up! The machine came today and I read the paperwork. The conditions of having the machine is that I have to take their blood pressure and pulse ox daily or at least weekly! 

You know when you feel like you are going to explode!? Given the day and life I am living, I did not need much help to lose it today. I called this company up and read them the riot act on the phone. I told them outright that the person who signed me up did not accurately report the requirements. I invited them to go back to their recorded call with me from last week to verify that I was very clear about how I was going to use this machine. I then told this person that I find Medicare completely disrespectful of the family caregiver. Apparently they think I have nothing better to do but to use their machine, give them access to data, and better yet have them tell ME when I should be taking my parent's blood pressure and pulse ox. NO THANK YOU! I told this woman that I have been the caregiver to both of my parents for three years now and the last thing I need to do is a task that I view as pointless. I am bright enough to determine when and if their blood pressure and pulse ox needs to be taken and I don't need the government to weigh in on this. I was absolutely LIVID. If Medicare actually wants to help family caregivers, then provide on the ground services and support. Otherwise, I would say STOP wasting money on laborious and ineffective programs, just to check the box that you are doing something. 

After I got off the phone with her, I then contacted my parent's doctor. I told him about this experience and I also told him that at his next appointment with my parents, I am bringing back the machines to his office. You know what? He actually apologized to me. He agreed with me, that this program was NOT a good match for me and my parents. After all, he knows that I watch them like a hawk. I don't need data to tell me what my eyes and intuition can easily tell me. 

Meanwhile, my dad is scratching away at both of his legs and they are both bleeding. I frankly some days do not know if I am coming or going and all I can say is WHERE ON EARTH IS MY HUSBAND? Where is the person who wanted my parents to live with us and who I thought was going to be with me as I manage their daily care? If any one thinks I am going to release the hurt and find a magical way forward needs to spend a full day in my shoes. 

Thursday, October 17, 2024

Thursday, October 17, 2024

Tonight's picture was taken in October of 2006. Mattie was four and a half years old. We took him to Butler's Orchard that weekend. This was a farm Mattie's preschool introduced us to, and though our time at that preschool was short lived, this farm became a tradition for us each Fall and Spring. Mattie loved riding the hay wagon to the fields to pick out a pumpkin! We took many wonderful photos in this spot and I really thought it was going to be a long standing tradition, that we would visit for decades. Never realizing how short a period of time we would have Mattie in our lives. 

Quote of the day: Then her heart, now broken into a thousand pieces, slowly began to turn to ice. ~ Morgan Rhodes

Don't even ask me about today. It was one big blur.... filled with chore after chore. My dad is back to scratching up his legs! He doesn't have bug bites and he doesn't have a rash. I am convinced this is part of dementia, being obsessed and fixated on a task! The problem with the repetition of this is that he will develop an infection if I don't get on top of this. I have tried every lotion and topical cream. Nothing works. So today, I literally put zinc oxide all over these scratches, put a sterile pad on top of that and then wrapped his legs in gauze. So far it is the only thing that works, along with ice packs. I could write a book on managing a person with dementia at this point, and it wouldn't make for fun reading. 

Later today I had my weekly therapy appointment. I basically told her she is on borrowed time. I find her ineffective and today she was basically telling me that I am stuck. That I can't seem to let Peter go, and find a way forward. Correct, I did not need to pay her for that revelation! She puts a rational lens on my situation, and I assure you there is nothing rational about it. I can understand her point of view, but she can't understand mine, nor does she give any credence that what I am expressing could possibly be true. She wants me to look forward, to imagine life NOT being stuck and with a future ahead. I told her she doesn't get it! NOT one bit. I don't see a future ahead, nor do I care to. 

If I hear her saying one more time about putting a coin in my emotional bank account, I think I will smack her! She mentioned going out with a friend, taking a walk, and the list went on! I told her I have no interest in walking, why meet a friend, as it isn't going to help me and with each thing she tossed out at me, I tossed one right back at her. I am quite certain she never met a person like me, but as I told her I do not need help understanding the world of Vicki or how Vicki operates. I am crystal clear on Vicki! 

It takes a lot to sit in all my losses and to feel the pain I am enduring each day. I have no choice, this is my life, but I can tell that not everyone is up for this challenge.  

Wednesday, October 16, 2024

Wednesday, October 16, 2024

Tonight's picture was taken in October of 2005. Mattie was three years old. That day we were walking to the George Washington University to attend their annual community Halloween party. Several of my students coordinated this event each year, and they were kind enough to invite Mattie. These were special and memorable moments. 

Quote of the day: A single heartbreak teaches you more than what a lifetime of schooling can. ~ Vineet Raj Kapoor

Today was another winner. I got up at 5:30am because our electrician was coming at 8am. I wish I could say I had electrical or engineering skills. I do not! Could I potentially figure things out watching videos? Maybe, but I just don't have the time, energy, or capacity to take this on. I have been dealing with outside lights that haven't been working for over a month. I was tinkering with them and tried to get them to work, but eventually my efforts were futile. Peter installed most of these lights and if he were around, he could easily fix the issues. Now that I am on my own, I am left to figure out things for myself. It is truly a daunting proposition. Especially when I have had Peter by my side for 35 years. 

In any case, Bob, my electrician, has been servicing this house since we moved into it in 2021. He and my plumber know the infrastructure of the house better than me. Bob explained that with the company he works for the cost for  changing and fixing each outside light feature would be $250. Since I had 11 lights, you can do the math. Because of our long standing history and the fact that I am balancing the impossible, Bob gave me a significant price break. Which is why I approved the work today and moved forward with the lights. Do note that I ordered the lights myself, as it was more cost effective that way. However, Bob was unable to fix the lights in our backyard. Clearly a wire may have been cut and trying to trace out which wire was affected would have taken hours. So we paused on that project. 

Then I got a call from our appliance repairman, Bruce. Bruce has also worked on appliances in our kitchen since 2021. Any case, I have a freezer that isn't making ice cubes, but instead sheets of ice. We thought changing the water filter would solve the problem.... it didn't! So now this will mean another trip out to diagnosis the situation and I am preparing for a larger issue. Bruce was also unable to fix the range, as it requires a whole new part. When he told me the price of that part, I was ready to set fire to the range, or jump out the window. 

Overall, during both visits what immediately came to my mind is I lost my husband. Bob was telling me the story of his wife. She is a home maker and at times feels badly because she isn't bringing in an income. Bob says rightfully so that she does work! That managing the house, him, the dog, cats, and caring for older family members is not just a full time job, but many full time jobs wrapped up into one. He spoke so respectfully and lovingly about his wife, which was nice to experience. This is how I imagined Peter felt about me throughout our marriage, until he didn't. 

Bruce also told me about his wife. She is in her 60s and compete in regattas! We got into a conversation about ice cubes and ice consumption at which point he asked me if my husband uses a lot of ice on a daily basis. Remember that Bruce met Peter, and knows me as a married woman. I skirted around the issue but once again, like after losing Mattie, I am faced with a massive identity crisis. Yet another one NOT OF my making or CHOICE.  

My friend Carolyn sent me a photo of Mattie Moon tonight. Got to love that Mattie Moon!

Tuesday, October 15, 2024

Tuesday, October 15, 2024 -- Mattie died 784 weeks ago today.

Tonight's picture was taken in October of 2005. Mattie and I made his costume together. We went to the craft store and bought a black sweat top and pants and different color felts. Mattie was trying to look like his cat, Patches. That year, Mattie never went trick or treating. Instead, he landed up going to the emergency room and being admitted for several days. He had an ear infection, which turned into sepsis. Mind you, the day before rushing him to the ER, I took him to his pediatrician. I told her I thought Mattie had an ear infection. She dismissed me as an overly worried parent. Rest assured, when she visited us in the hospital, I gave it to her, and she apologized. She admitted she was wrong, I was right, and from that day forward whenever I told her I thought something was wrong with Mattie, she listened. Thanks to the stretchy nature of the sweatsuit, Mattie was able to use this costume in 2006!

Quote of the day: Losing him was like having a hole shot straight through me, a painful, constant reminder, an absence I could never fill. ~ Jojo Moyes

After dropping my dad off at his memory care center, I did one chore after the other. By the time I got home at 11am, my mom was still not downstairs. So I continued to do things around the house and got derailed on several projects. Over the weekend, I did more of my continuing education class. I have about 20 more minutes of this six hour course, before moving onto another class. However, I learned about emotionally driven behavior and a concept called opposite action. 

When we get emotional, our rational brain goes offline. Once that happens, our emotions run us and then we make decisions and act on how you feel. This is called emotionally driven behavior. The problem with this is these behaviors can be destructive and intensity the original emotion. Here's an example, let's say you are depressed. This sad and low feeling causes you to pull back and stay in bed, because you feel that whatever you could do just won’t work. Of course the more we stay in bed and be unproductive, the worse this may make us feel. Therefore heightening the original feeling, depression. 

The thinking is to act, despite how you may feel. To stop listening to your emotional brain and behaviorally get your rational brain back online by doing the opposite of what your emotional brain tells you. So with the depression example, an opposite action would be to push against your depression, get out of bed, and for example apply for jobs even though you don’t feel like it. I have been thinking a great deal about what this presenter has been talking about all weekend. 

Opposite action is one of the tools used within radical acceptance. Radical acceptance is to accept things in their entirety. Or as Marsha Linehan would say, (the founder of Dialectic Behavioral Therapy)..... "Letting go of having to have what you want at any given moment in time." Radical acceptance doesn't mean we have approve of what causing us pain, but it means to acknowledge it, accept it, and to try to move forward with it. 

The mantra I have been telling myself over and over this weekend is..... I wish Peter would return to me, value and love me, and be the person I thought he always was, to now saying I know I want these things, but it is not going to happen. No matter what I have done this year, it hasn't changed the trajectory. Therefore, I am working on trying to accept the impossible. It doesn't mean that it negates my feelings. My feelings are there and justified, but I can't change the reality, because I am not in control of Peter's thoughts, feelings, and actions. 

One of the skills in achieving radical acceptance, is opposite action. I am trying to actively be aware of my feelings, so they do not overrun my behaviors. As it is very easy to be sad, angry, and anxious. This weekend was case in point. I am anxious interacting with people, having people visit me, or doing new things. Mainly because I am balancing a circus show with my parents and the heartache of Peter leaving me. Therefore when I feel anxious, my natural feeling is to retreat. But this weekend I pushed through that and did the opposite action.... I had my dad's physical therapist visit and then I took my parents to a deli (a place I normally wouldn't visit with them). Both opposite reactions turned out to be positive experiences, thereby easing my anxiety (or at least in that moment) with talking and interacting with people. 

You maybe asking yourself, WHY is Vicki giving me a lecture on radical acceptance and the tool, opposite action? Because, I am trying to apply these concepts to my own life, and since the blog is a big part of my life, it translates into my writings. We all get stuck, we all get wounded by people, and we all feel uncertain about life and how to take a step forward. Since I find therapy ineffective, I have decided that I am doing what I have always done in life..... learn, research, and process for myself. Or at least this is my current thinking, it could change on a dime given the fragile nature of my situation.

Monday, October 14, 2024

Monday, October 14, 2024

Tonight's picture was taken in October of 2004. Mattie was two and half years old and his first preschool (which he only lasted at for two months) organized a field trip to Butler's Orchard in Maryland. Given that this school did not understand or appreciate Mattie, there was NO WAY I was going to let him go on a field trip without me. So I went as a chaperone. It was a rainy and damp day, Mattie seemed to have developed a cold during the trip, yet despite that he loved the hay wagon ride and the opportunity to pick his own pumpkin from the patch. I snapped this priceless photo and the one thing I got out of that preschool was that I was introduced to Butler's Orchard, a place we ventured to each fall and spring with Mattie. 

Quote of the day: The worst thing ever is seeing your best friend slowly replacing you with another friend. ~ Unknown

This morning, I got up early, because my mom had an in-home physical therapy session. I am noticing this year, that she is having a much harder time dealing with the morning hours, and getting ready in time for morning appointments is challenging. I literally have to herd her, and mind you I am already juggling my dad. 

Of course during my mom's therapy appointment, my dad had bathroom issues. I spend more time each day cleaning him and the bathroom than I care to report. I thought things would have gotten better post-kidney stone surgery, but in many ways they have gotten worse.  

Once that appointment was done, a few hours later, my mom had a virtual appointment with her rheumatologist. This doctor oversees her bone density and Prolia injections. Naturally if it involves technology, rest assured, I am going to screw it up. We couldn't see the doctor and she couldn't see us, but we at least could hear each other on my phone. Of course if Peter were here, I know he would have figured this out the issue....one, two, three. There are many things I miss about not having my husband around. Not just for chores and tasks, but for moral support, to share the load, and there is a special feeling knowing that you have grown up with someone, and share a history. A person who has seen me in the good times and the horrific times, and yet through it all we were bonded by love, commitment, and respect. These are the things that motivate me in life, they keep me grounded, and make me feel more secure, and allow me to have a better outlook about my future. With Peter gone, each day I feel like I am teeter on top of a cliff. If I survive the day, then it is one day down. 

After the virtual appointment, my parents were hungry and my mom did not want to stay home. I decided to push through my comfort zone and take them to a new restaurant near us, The Carnegie Deli. It opened up in the summer and I have driven passed it numerous times. 

I am always hesitant to try new places with my dad because I do not know how the service will be and most importantly, I worry about the bathroom availability and location within the restaurant. Again, this may not sound like a huge deal, but for me trying something new with my parents is miraculous. 

This is one of the rooms in the Deli. It has wallpaper of Carnegie Hall in NYC. When my dad was 11, he performed on the stage of Carnegie Hall, so this was a good mental moment for him. We discussed his performance, his love of the saxophone, and he recalled the feeling of what it was like to be up there under the bright lights. 

One thing we quickly realized.... my dad still loves deli food. He ate up a storm today. We haven't seen him eat like this in weeks! 

The diner is bright, airy, intimate, clean, and our waiter was lovely. My mom told me when she was living in NY, she ate at the original Carnegie Deli. Which got us into a discussion of delis in NYC. I remember going to a deli with my parents called Wolf's, when we used to visit NYC. So this conversation got my dad thinking and reflecting! Which is a positive thing!

The deli was decorated for Fall, and to me it is a great space for someone with dementia, as it truly orients one to the season! They were playing 80s music, and I could see people all around me bopping their heads and feet to the music! I grew up with 80s music, so I felt right at home. Ironic how music can evoke so many thoughts and feelings. 

Now this may be my favorite spot of the deli. All the cakes and pies come from their New Jersey store. My mom and I shared a chocolate mouse cake that was amazing..... not heavy and not too sweet. 

Sometimes moving out of my comfort zone is a disaster, today's adventure turned out to be a positive one for all three of us. 

Sunday, October 13, 2024

Sunday, October 13, 2024

Tonight's picture was taken in October of 2004. Mattie was two and a half years old and that day we went to the George Washington University for a community Halloween event. Several of my students were coordinating this event and they invited Mattie. As you can see, that year Mattie was Winnie the Pooh. He was the cutest Pooh! At the fair, there were games, balloon animals, food, and they were gifting free children's books. Mattie chose a book featuring the character, Franklin the turtle. This was a series he loved watching on TV, so he naturally gravitated to the book. You can see Mattie was animated, listening to the story, and trying to chime in as I read! 

Quote of the day: Don’t feel sad over someone who gave up on you, feel sorry for them because they gave up on someone who would have never given up on them.  ~ Frank Ocean

I read Frank Ocean's quote tonight, and I literally said, AMEN! This is me to a fault. If I love you and you are a part of my world, I don't walk away. EVER. It is not in my nature. In fact, even if treated poorly, I will dig deep to understand why this is happening, and try to repair the problem. I don't give up on people I care about and therefore, I guess that is why it is so hard for me to understand what is happening in my marriage. Since I assumed we both shared this core value. 

I mentioned on this blog that I have befriended a woman in England. We met each other through a support group. We communicate daily. Literally we are living a parallel life right now, and we never met each other (well other than in a virtual group, of which I lasted only two sessions). She and I understand each other and wake up and go to bed each day in total disbelief that this is our life. It doesn't bring me happiness that she is walking this same path, but it does help to have a person who gets the deep betrayal, pain, and heartache. Because we are facing similar issues, we can easily bounce things off each other, and we help one another see things as they are, or with a different lens. 

Today was 80 degrees. I could have been inside and working on my continuing education. But I didn't! There aren't going to be many more beautiful weather days like this ahead, so I went out on the porch for thirty minutes. It saddens me that neither of my parents love being outside. 

I wasn't outside alone, Indie was happy to come with me. She loves outdoor time, but since she is an escape artist, I will not allow her outside without constant supervision. 

I took my parents out to brunch today and Cheryl, our amazing server, gave me this Halloween/Fall themed gift. We have known Cheryl, since my parents moved East in 2021. So that is three years now, and she knows about my journey and I know all about her family. As you can see Cheryl knows that I love sunflowers!