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!

Saturday, October 12, 2024

Saturday, October 12, 2024

Tonight's picture was taken in October of 2004. Mattie was two and half years old. We took him to a fall festival that weekend. A traditional highlight to our Falls. I never went to fall festivals as a child, so in all honesty it was as exciting for me as it was for Mattie. Of course I had the added bonus of seeing the adventure through Mattie's eyes. When Mattie saw these large slides at fall festivals, he was a bit nervous and cautious. But with Peter's help, he was willing to try it. It was love at first slide! This is also the Peter I will always remember, a man who was devoted to me and his son. 

Quote of the day: How strange is it, that after all that, we are strangers again? ~ Lang Leav

For the last two months, my dad hasn't had his physical therapy sessions on Saturday. Either my dad was sick, needed surgery, was recovering from surgery, or his therapists were on travel or managing family issues. But last night one of this therapist's text messaged me and said she could come over today. I thought about it and then responded that she should come. I am very worried about my dad's lack of energy, strength, and decreased appetite. I happen to love this particular therapist. I met her at the hospital in 2022, after my dad had his pacemaker surgery. I clicked with this woman right away, and I always say.... she is a younger version of me. We have a similar personality style, energy, and love and patience for people. I liked her so much, that once my dad finished therapy in 2022, I signed my mom up to work with her. My mom worked with her at the hospital for 10 months! So this therapist has been a part of our lives for two years now. She is a rare gem. 

Today when Cassidy (the therapist) came over, she brought homemade cookies from the Farmer's Market. She and I both love sugar. It was truly a kind and thoughtful gift. Aren't these the cutest fall themed cookies. We debated on the brown fellow. I saw squirrel, my dad and mom said a bear!  

While Cassidy was working with my dad, I sat down to try to figure out how to pay six big bills. This is on top of my usual bills, and my mom's. I am learning about our mortgage and escrow, and the fact that the escrow amount can change year to year due to taxes and home owner insurance. Our mortgage company was kind enough to explain this to me today. 

After my dad's session, I spoke to Cassidy for a bit. She is very giving of her time and we all chit chatted about all sorts of things. So the irony is I wasn't sure I wanted her to visit today, but having her presence in the house perked me up. 

Later this afternoon, after doing a ton of laundry, I took my parents out for lunch. My dad loves going out to eat. I limit these outings these days for various reasons. But what is equally depressing is his change in appetite. He used to love food and eating, now he eats a few bits of things, pushes the plate away and says he is "FULL." I don't like wasting food, money, and also feel great stress eating with him, because once he is done, he wants us to speed up our eating process. So I never eat in peace, and of course there are many runs to the bathroom with him!

When I got home, I unpacked several Foundation Item Drive boxes, processed the mail, fed Indie, folded laundry, got my parents settled, and then I went outside to pick up sticks and continue pulling vines and debris away from our fence line. It was a glorious weather day, and when the sun is out, I try to get outside to manage my anxiety and to take a mental pause from my daily heartache.  

Look who was outside with me this evening... Mattie Moon!

Friday, October 11, 2024

Friday, October 11, 2024

Tonight's picture was taken in October of 2003. Mattie was a year and a half old and this was technically his second Halloween. But it was the first one that we actually took him out to go trick of treating. At that time, Peter's brother was living in Washington, DC. We went to their neighborhood so Mattie could go house to house with his cousins. Fortunately we brought Mattie's stroller with us, because after a few houses, Mattie had it! He was creeped out by the Halloween decorations, and he wasn't motivated by candy! In fact, Mattie did not like most sweets. This was the one thing we DIDN'T have in common. What I do know was Mattie made the cutest pumpkin!!!

Quote of the day: I went inside my heart to see how it was. Something there makes me hear the whole world weeping. ~  Rumi

I woke up at 5:30am in order to get myself ready, breakfast made, the first floor cleaned up, and then my dad showered, dressed and downstairs. I had a heating technician scheduled to come over at 8am. It takes a lot of planning for me to make an 8am appointment work. Our second floor has been freezing and I have been concerned that my parents will get sick from the cold. 

Everything on my end was working timing wise. Of course the technician's schedule was altered and he did not get to me until 12:30pm. There wasn't anything I could do about this, because I needed this problem addressed. I was truly a nervous wreck about his visit, because I know all the furnaces in our house are old. I replaced one this year, and am paying for it for the next 18 months. I most definitely do not want to finance a second one right now. When the tech came, I knew him! He was the same fellow who serviced our furnaces a month ago. I try to do regular maintenance of these things, because I am trying to prolong the lives of the furnaces. I made it very clear to Mason that I am NOT paying for another furnace. Therefore, we have to triage this thing! Any case, after he went to the attic, walked around a bit, I actually heard the fan of the furnace turn on! That was a good sign. When he back came downstairs, he told me that when he did the furnace check up and cleaning a month ago, he shut off the gas valve, and forgot to turn it back into the "on" position! That was the BEST news yet! In fact, when my mom and I heard this, we landed up hugging each other. It was like winning the lottery, as I was bracing for the worst. 

I spoke to the technician again about our range and refrigerator in the kitchen. As they are both having issues! They told me they are ordering parts for both appliances and I am hoping that the issues are on the easier end of the problem trajectory. They too have prepared me for the worst as well. NOT what I want to hear.  

While home waiting for the technician, I did about another hour of continuing education. I learned about the concept, "Radical Acceptance." Radical acceptance is not approval of the situation. Instead, it is acknowledging that the situation occurred, but cannot be changed. It is living with this reality. I certainly know all about this with Mattie's death. I can't change that Mattie died, nor could I change the process of grieving, but instead with time, I had to find a way forward to live with this heartbreaking loss. The presenter talked about the role of faith. Faith that this is not the last time I will feel a painful emotion and also faith that this painful emotion will pass. Not dissolve, not get erased, but it will evolve in intensity with time. All very interesting and of course as I go through this course, I try to apply these skills to my own heartbreak now. 

It was a day of many surprises. The surprise that I don't need a new furnace, a surprise that I figured out how to cash a treasury bond at the bank, a surprise that I got to meet with a banker and ordered new checks for my parents on the spot, a surprise that I could have tea with my mom and for a minute not feel like I was going to jump out of my skin, a surprise that I figured out how to turn the septic system over to the other side using a long key, and then by my front door today, I found this beautiful surprise from my friend, Carolyn! Carolyn is an integral part of team Mattie and now team Vicki and knows my love of sunflowers and their symbolism to me! To me there is nothing like fresh flowers. 

When Mattie was enduring his cancer diagnosis, Team Mattie would give me sunflowers any time we were home from the hospital. Dealing with the impossible and deeply scared about Mattie's diagnosis and horrific treatment process, seeing these sunflowers reminded me back then that I was not alone. This was the same feeling and sentiment Carolyn wanted to remind me of today. 

Thursday, October 10, 2024

Thursday, October 10, 2024

Tonight's picture was taken in October of 2003. Mattie was a year and a half old. At this particular fall festival, they had a petting zoo. Look at Mattie's face! To me it was priceless, as he wasn't sure what to make out of this pig. He was observing, but not comfortable enough to touch it. What I do know is that I loved exploring the world with Mattie and through his eyes. 

Quote of the day: When we have no reason to be happy, we often think that it is the end of ourselves. We often think we have no one in this world. It happens when our loved ones leave us and make us alone in this vast universe. ~ Debolina

It was another winner of a day.  I have arranged for someone to come over tomorrow to look at our furnace and thermostat, as I am having trouble with heat getting to the second floor. Every time, I deal with the heating and cooling professionals, my heart is in my mouth, because it usually means a costly repair. As for the freezer and range issues, I spoke to our Thermador repair fellow and he is ordering a part, in hopes it easily corrects the problem. Nothing is typically easy for me, but I know I have to be on top of these home repairs, otherwise, if I push it down the road, only more things will arise and pile up on each other. This house is a full time endeavor of trouble and heartache. 

This evening, I went for my weekly therapy session. In about a month, I will have been working with this therapist for a almost a year. Do I find it helpful? NO! No fault of the therapist, my situation is just horrific, and unfortunately most of you who read this blog do not know the full extent of the destruction I have been faced with and have been forced to deal with. With the emphasis on forced. None of us like when we have no control over certain decisions and when life choices are being made for us. 

When I got home from therapy, I was in the process of dealing with dinner, when my dad started moving toward the bathroom. He won't go to the bathroom unless I am home. He refuses to go with my mom. Make a long story short, it was a bathroom disaster, of four bouts of diarrhea. It was so awful, that he stressed me out so much that I started screaming. I can't even sit with a thought or feeling for one second, without dealing with bathroom issues. When I finally got my dad to the dinner table, he refused to eat. My dad said he wasn't hungry and became attitudinal. At which point, I got him up and back to his recliner. There was no reasoning with him, and frankly I did not have the energy to get him to eat. Tomorrow is another day of more of the same.... more intense caregiving, chores, tasks, cleaning, cooking, repair issues, bill paying, and heartache. I am stuck in a terrible Groundhog's day, with no hope of waking up to learn that what I have been living with is just a bad dream. 

Wednesday, October 9, 2024

Wednesday, October 9, 2024

Tonight's picture was taken in October of 2003. Mattie was a year and a half old. In theory it was his second Halloween. He was only six months old for his first Halloween, therefore, he had no understanding for the holiday. That year, Mattie and I went to Target together and when I saw this pumpkin sweat suit, I thought he would like it, which he did. Mattie had sensitivities to fabrics, anything itchy, and definitely did not like anything constraining, which is typical for most costumes. So for Mattie's second Halloween, he was dressed up as a pumpkin! 

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

Now that my dad's ureter stents have been removed, I thought things were improving for him. But unfortunately for me, they are not. With each trip to the bathroom, I am faced with him stopping up the toilet with massive amounts of toilet paper and urine all over the floor. This is NOT a once a day occurrence. It is every time he goes to the bathroom. When I tell you I am constantly cleaning, I am not kidding. All I can say is WHAT A LIFE. Somedays I wonder why I even get up in the morning. 

Given that it was in the 40s this morning, I decided I needed to turn on the heat, because the last thing I need is my parents getting ill. Naturally nothing is easy for me. I had trouble turning the heat on in the second floor. I kept at it, and I think I finally got it to work. On top of dealing with thermostat issues, the kitchen freezer is having issues and the range is making igniting sounds, when the gas is turned off. Truly this morning, I was ready to jump out of the window. I can't take all the stress, nor can I take the stress of juggling budgets and unexpected issues and repairs. I can spiral downhill very quicky these days for many reasons. My life is in shambles, as my future has been decimated and in many ways, my past 35 years I have had with Peter seem non-existent and are being erased. All of this is devastating. Then add onto this financial worries, managing a house, and caregiving around the clock, and I am living the perfect storm. 

I range from being anxious, to having great despair. At times, I see no way out of this nightmare and what I can't understand is how does my husband NOT care about me? How could he leave me like this? Better yet, after 35 years together, how can I be this forgettable? 

After dropping my dad off at his memory care center, I headed to the hospital for my annual mammogram. Now that I have been labeled high risk for breast cancer, I am juggling MRIs and mammograms yearly. Next month I am headed for genetic counseling. Again, I can't help but be reminded when in these situations, that I am facing all of these things without my husband. I lost my medical emergency contact and frankly I feel like a boat in the ocean without a motor, rudder, or compass. I maybe bobbing around in the water, but I have no destination, no direction, and I am without the hope of finding land or stability. 

The mammogram tech was officious. Nonetheless, I complied with her directions and moved along. Within hours, I received my results in the portal, and thankfully everything is fine. But I know how this works, and how fragile life is, as it can change on a dime. I saw this with Mattie's diagnosis and I see it now with my marriage. Just to make it perfectly clear, I take marriage very seriously and no matter how busy I am with my parents, I was willing to seek counseling with Peter. But it takes two to want to work on things, and I learned that I was the only one willing to do the work. The only one who thought our relationship mattered and was worth fighting for. For 35 years, I have devoted my life to my husband and with his leaving, he took away the best of me. A very sobering reality indeed. 

Tuesday, October 8, 2024

Tuesday, October 8, 2024 -- Mattie died 783 weeks ago today.

Tonight's picture was taken in October of 2004. Mattie was two and half years old and we took him to a fall festival that weekend. In fact, fall festivals were our tradition. We went to many of them for at least three or four years. Mattie loved them. He loved all things pumpkin and as he got older, he loved the slides, activities, and hay wagon rides. As a kid, I never went to a fall festival. So when Mattie came around, I got to experience so many adventures with him and through his eyes.  

Quote of the day: I understand it, but I don’t like it. I wish we could all be together like before: best friends, not heartbroken strangers. ~ Amy Plum

For over a year, I have been dealing with a neighbor who has basically been trying to transform her entire house and property. Construction, debris, noise, and congestion! These are things I have gotten used to, which wasn't too hard, after all, as I lived in the city for over 20 years. But I expected a different sort of existence in the suburbs. So far, I would say it is over rated and there are aspects of the suburbs that I have come to dread, despise, and will never forget. I will leave it at that. Today's congestion was over the top! Can you see that my driveway was blocked??? Naturally I pitched a fit, but if I did not advocate for myself, do you think anyone else was going to? If you answered no, you earned yourself a GOLD star! 

I had high hopes of wanting to complete another hour of continuing education today for my license. In usual fashion here, the day spiraled out of control. First my mom's physical therapy came to do an evaluation of her. What I thought was going to be a 20 minute session turned out to be an hour. Ironically I learned a little more about this man's life. His wife was an artist, she loved to paint still life and landscapes, and she died of ovarian cancer. He says whenever he comes into our home, it reminds him of the home he shared with his wife. This man was married for 32 years, in love with his wife, and was her caregiver until the day she died. A rare breed. This is the type of man, I thought I was married to, so hearing this story, sent like an electric wave throughout my body, to the point, where I could feel my anxiety level rise. 

I showed my mom's therapist four of the paintings I bought from the local artist I love. The same artist working on the two pieces for our family room. In any case, he told me he had been admiring these pieces and they reminded him of the work his wife used to do. Though he has been a widow for a couple of years, he told me there is no way he would consider dating or marrying again. I absorbed what he said, and I told him I understood. I did not tell him about Mattie or Peter, but naturally his experiences resonate with me. 

After the therapist left, I went ten rounds with my mom's long term care insurer. This insurer is making me crazy. Each time I talk with them, they appear clueless about her policy and what the policy offers. It borders on an infuriating experience and trying to get a hold of her care coordinator, is like trying to swim through quicksand. 

On top of this, I learned about a crime report for our neighborhood and had to get information about this which lead me to calling the police and speaking to neighbors. So needless to say, my training class NEVER happened today. 

I also received a call about enrolling my dad into Medicare's Guide program. This is a program that is supposed to SUPPORT the family caregiver of an Alzheimer's patient. Sounds good in theory, until you dig deeper. The program entails training classes and perhaps a 24 hour support line. I literally LAUGHED at this person. I told him I have been juggling the impossible for three years now. I could give my own class on managing a person with Alzheimer's, I certainly don't need more training. I told him if Medicare actually wants to be of help, then they would provide more on the ground supports for family caregivers, supports that would actually enable us to get the respite that we need. You are going to love this.... part of the Guide program's benefit is they offer caregivers $2,500 a year for respite services! If you know anything about respite care, $2,500 is a complete joke! Any case, I gave this man a mouthful, told him the system is broken, and that Medicare only supports patients and their families who are in medical crisis. They aren't interested in preventive care, or care that would enable the patient with Alzheimer's to maintain independence within the community. If they were truly interested in helping the caregiver, then they would be talking directly to us about our needs and assessing what actual supports are required. Giving us access to standardized training, that may not be applicable to our loved one, is like putting a Band-Aid on a patient who is bleeding out. POINTLESS, but at least they can check the box!

I brought this beauty inside today. It is a portulaca. The flowers close up at night and open by day!