Saturday, April 20, 2024

Saturday, April 20, 2024

Tonight's picture was taken in April of 2003. Mattie was one year old. He was beginning to toddle around by holding onto furniture and our hands. Mattie used to love looking at this photo as he got older! In particular, if you look at the photo below, you will see what I mean. This photo was literally the before and the one below was the after!

This photo was taken in May of 2006, three years after the one above! Look at that big smile... he was proud that he was growing taller!

Quote of the day: My little dog—a heartbeat at my feet. ~ Edith Wharton

So much in life is the little things. This afternoon, I had to create more daily checklists for my dad. I started checklists about two years ago with him. Without a checklist, my dad will brush his teeth about five or six times in one morning, use mouthwash like water, and shave multiple times. The checklist helps him keep track of his bathroom activities. I think the checklist helped him for a year or so, but now his mental decline is so significant. Even with the checklist, he forgets to check it, and does things repeatedly. I now have to regulate toothpaste and mouthwash, otherwise, he will go through a tube/bottle in a week! My dad's decline is noteworthy, sad, and frustrating at times. As I was printing out daily checklists for May, June, and July, I naturally reflected on my dad's Alzheimer's disease, but I also reflected on my marriage.

Each time I print out a season of checklists, I say to myself... maybe next season will be better for me. So far I have survived the fall, winter, and now moving into the spring. It is funny how the mind works, thinking and hoping that things can change for the better. But at the end of the day, I am a realist. I am not sure what keeps me going day to day. 

I took my parents out to lunch today. My dad had a full meal. When we got home, I got him toileted and then back in his recliner. Within minutes he said..... do you think we should go out for a meal so you don't have to cook? The sentiment is lovely, but honestly I lost it. I had just finished a full journey out that I find it absolutely incredible he did not remember traveling in the car, he did not remember eating, he did not remember our conversation, and basically it is very demoralizing. Naturally I know my dad can't help it, but it is a disease that can make the caregiver feel beyond unstable and given my current situation, I do not need any help. 

Friday, April 19, 2024

Friday, April 19, 2024

Tonight's picture was taken in April of 2005. That day we took Mattie to the National Arboretum. I loved going there around Mattie's birthday! In fact, my joke with Mattie was that the azaleas bloomed in order to celebrate his birthday. Mattie loved hearing this and we all enjoyed exploring this amazing natural space!

Quote of the day: Everyone is taught that angels have wings. The lucky ones of us find that they have four paws. ~ Jury Nel

After dropping my dad off at the memory care center today, I headed to the grocery store. However, before I got there I passed a Lowe's. I have been debating about planting flowers in our pots. It is a large undertaking, because we have pots all around the property. Typically in the past, we would do one shopping trip, come home, unload and plant. I do not have the energy for ONE big shopping trip.

Today I decided to stop at the Lowe's garden center and see what they had available. It was a great day to shop because it was a weekday and it was frigid out for spring. Therefore, I wasn't fighting crowds and could instead walk through the nursery and explore what they had. I committed today to purchase items for the front of the house. As you can see I got an orangey Gerber daisy for the front door area. I am a big daisy fan. To me they are happy flowers!

The previous owner of our house, left us this flower pot in the front of the house. I decided to plant a pink Mandeville and variegated vincas. Both should be easy to take care of and provide that flowing over the pot look that I am trying to achieve. 

Outside our side door, I planted a Shasta daisy and petunias. I absolutely love petunias. These flowers love the summer heat and they keep producing throughout the summer months. Planting these today reminded me of our townhouse in Washington, DC. I can't tell you how many petunias I planted there over those twenty plus years. 

I spent about two hours alone this morning on my grocery store and Lowe's trip and then another hour outside this evening planting. This may not sound like a big deal, but it was....... as I am rarely alone! 

Thursday, April 18, 2024

Thursday, April 18, 2024

Tonight's picture was taken in April of 2004. This was right before Mattie's third birthday party! The theme that year was Blue's Clues. Mattie and I would decorate and brainstorm for days. I remember hiring an undergraduate student who was a part time magician. He did a great job at the party and even brought his pet bunny, Hobbes. Mattie had a great time and notice we were both dressed in orange. Mattie loved that color. No surprise that it became the official color of Mattie Miracle. 

Quote of the day: Absence is a house so vast that inside you will pass through its walls and hang pictures on the air. ~ Pablo Neruda

Last night I must have been so tired, that I fell asleep with the lights and TV on. At around 3am, I came to consciousness, was disoriented, but with it enough to shut everything off! I took my dad to his foot doctor appointment this morning. He sees this doctor every 9 weeks. When the doctor saw my dad's legs today.... he said, what's going on?! My dad is having another allergic reaction to the second statin drug we have tried. He was initially doing well on it, but after about two months on it, the intense itching started up. Given the significant nature of my dad's dementia, he can't help himself.... so he scratches and scratches! There is nothing I can do to prevent this, I have tried everything, including bandaging up his legs. 

In any case, about two weeks ago, I contacted his doctor and he agreed, we should stop the statin and try to reset my dad's system. Thank goodness I put two and two together and realized this was a drug reaction, otherwise, my dad would be ripping his skin off causing an infection. That happened with the first statin drug he was on, so I learned my lesson! 

Overall, it has been quite the day! My dad pooped in his pants twice and it was a big clean up job each time. On top of this, something is wrong with my car. So it has to go in next week. By around 4pm, I had just about had it! I had it with cleaning, meeting demands, and feeling abandoned and alone in life, so the only thing I could think of doing was to go outside. Since Sunny died, I have yet to take a walk. I have no interest in doing that now without my Sunny boy. My therapy is grabbing our big garbage bin and dragging it around our yard. I pick up branches, debris, and today also took on weeding. Pulling out weeds to me is very therapeutic! With my yard, there is a lot of therapy to be had, because removing weeds is like a full time job around here. 

I can't believe tomorrow will be Friday. So many people look forward to Fridays. I dread it. Because I know Saturday and Sunday have less structure and I have my dad in tow, which makes things far more complicated for me. But overall, what I struggle with is facing my life without my other half. My life has been very intertwined with Peter's. He has been a part of my life since I was 19 years old. It would be one thing if he died. That would be hard to face and accept, but my reality is far more painful than death, because at least in death, I would know that I was loved until the end. 

Wednesday, April 17, 2024

Wednesday,  April 17, 2024

Tonight's picture was taken in April of 2003. Mattie was one year old! I think Mattie's favorite place to be was outside! It did not matter what the weather was like... he preferred fresh air, space, and seeing signs of nature. Though I did not share this love at first, through being Mattie's mom, I came to appreciate the beauty that only nature can provide. 

Quote of the day: The one best place to bury a good dog is in the heart of his master. ~ Ben Hur Lampman

Today was another marathon day. After dropping off my dad at his memory care center, I came back home and greeted my mom's physical therapist and got her set up for her session. I then left them to work, while I drove to the bank for an appointment. I went to meet with a banker about Mattie Miracle's account. As I was sitting down with the banker, she looked up the Foundation in the State Corporation Commission (SCC) website. In Virginia, you create a nonprofit by filing "articles of incorporation" with the State Corporation Commission (SCC) and paying a filing fee annually. In any case, our re-instatement with the SCC was granted in January of 2024. Yet when the banker went onto the SCC site she couldn't find Mattie Miracle. If she couldn't find us on the site, this would be a huge problem for us and I wouldn't be able to continue with my bank appointment. 

I truly began to panic! It doesn't take much for me to go from zero to 80 within seconds. Any case, while she continued to search, I pulled out my cell phone and I showed her the image I had of our re-instatement. What was the problem? She did not enter our full name... The Mattie Miracle Cancer Foundation. She forgot the "The." Needless to say, I will never forget that moment in time or the fact that the full name has to be entered into the system. Any case, after that 45 minute appointment, I headed home. 

I juggled phone calls, and got more information about my mom's long term care insurance policy. All I can say is it is almost 11pm, and I am still working! So I am signing off for today, as I am very tired. I long for a day of rest and would love just one day where I wasn't facing a crisis or putting out a figurative fire.  

Tuesday, April 16, 2024

Tuesday, April 16, 2024 -- Mattie died 759 weeks ago today.

Tonight's picture was taken in April of 2002. Mattie was about a week old. We were home from the hospital and as you can see I was exhausted. Trying to recover from a c-section, having a bladder tumor removed during the c-section, and dealing with post partum depression. None the less, Mattie and I found our way together. He absolutely loved napping with me that first month, and remember that overall Mattie was NOT a napper. Even as a baby! 

Quote of the day: People leave imprints on our lives, shaping who we become in much the same way that a symbol is pressed into the page of a book to tell you who it comes from. Dogs, however, leave paw prints on our lives and our souls, which are as unique as fingerprints in every way. ~ Ashly Lorenzana

May day started at 5:15am. I had to get up that early in order to get my household ready for the day, so I could leave at 8:45am, to get to my doctor's appointment. I was gone from home for about two hours, and in that time, I went to the hospital, got gas for the car, checked the Foundation mailbox, picked up scripts at CVS and stopped at the grocery store. When I do not have anyone in tow, I can move like the wind. In a way, this two hours was very freeing, despite filled with chores. 

Once I got home, more chores and tasks began. One of the many things I am tackling is my mom's long term care insurance plan. I am getting a total run around from the company, and have been dealing with the application process since January! JANUARY! I am familiar with her insurance plan, since we activated my dad's (a companion) plan in 2020. In any case, I decided to take a gamble, and I reached out to my contact in Los Angeles. She worked closely with me when my dad was so sick and needed caregiving and home health care (nursing, OT, and PT). Mind you my parents have been living in Virginia with me for almost three years now. So it would be plausible that this contact in LA wouldn't remember me or even be working for the same company. 

Not only is she still working for the home care company, she is now the director of finance. I am NOT at all surprised. She is bright, efficient, professional, compassionate, and KNOWS her stuff. I wrote her a long email today explaining my issue with the long term care insurance company and within minutes she wrote me back. She actually knows my parent's policy information better than the long term care insurer. Hysterical no? Make a long story short, she is reaching out to the insurer on our behalf. She doesn't need to do this! We are no longer clients of her company, and I know she is a busy professional. There is no benefit to her by helping us. But this tells you the strength of her character and her commitment to others! She is another angel in my midst. Someone who goes above and beyond in their job. Because helping and supporting people are tantamount over numbers and money. This woman is a blessing in my day. Any one who wishes to help me, listens to what I am facing, and wants to be part of the solution, is a TOTAL gift to me. 

I loved this home care agency so much that it was painful to move my parents East. I truly trusted this agency, its administrators, and their loving and competent in home caregivers. To this date, I am still in text message communication with my dad's two caregivers. They were quality and loving women and believe me I am a tough job when it comes to caregiving. But if I were sick, I would welcome them caring for me any day. That is how much I appreciated them. 

I do think people attracted to caregiving are a special lot. It is a calling, not a job, and as such, we understand each other, and if a need arises, our reaction is WE WANT TO HELP or at least lend emotional support!

Monday, April 15, 2024

Monday, April 15, 2024

Tonight's picture was taken in April of 2002. This was newborn Mattie, just days home from the hospital. Honestly at that moment in time, I did not know if I was coming or going. I was recovering from a c-section, had post-partum depression, and as a new mom, I had no idea what I was doing. However, the beauty of being Mattie's mom was I rose to the challenge and for that I will always say he was my greatest teacher in life. 

Quote of the day: A dog will teach you unconditional love. If you can have that in your life, things won’t be too bad. ~ Robert Wagner

Some days I have no words! Today was just one of those days. I was dealing with one issue, after the other, after the other. Frankly I haven't had a minute's peace since I moved into this house and now almost living here for three years, my life has been permanently altered in a catastrophic way. 

At 4pm, I was interviewed by a reporter for a childhood cancer article. Truthfully, I had a hard time focusing, as internally I felt anxious, angry, and sad... ALL at the same time. Yet I got through the interview and the reporter said I gave her a lot to think about. Things she hadn't heard before. I chalk that up to Mattie working his magic through me. How I wish Mattie were alive, as he would be my best ally. 

I have no idea how I made and served dinner tonight. But I did. As I was about to sit down, my mom was going to head into a lament. I literally LOST it. I told her she had two choices tonight, one she could keep quiet and change the subject, or two, she could go upstairs. I was in no mood to absorb any more commentary, as I have enough rolling around in my head. 

Tomorrow morning, I have to get up at 5am, in order to get my chores done, my dad showered, dressed, and downstairs, before I run to my doctor's office for my yearly bloodwork. Of course when I get home, I will once again hit the ground running with more chores and issues to resolve. All I can say is God give me strength, because some days I don't see a path forward whatsoever. 

Sunday, April 14, 2024

Sunday, April 14, 2024

Tonight's picture was taken in April of 2004. Mattie was two years old and for his birthday party, we put up paper and activities all over the front hallway wall. Mattie and the kids loved it! I left it up for several days and as you can see, Mattie continued to go to the wall and create. He was a busy fellow and the one thing Mattie always did was keep me on my toes. It took a lot of energy on my part to meet Mattie's needs for stimulation, activity, and exploration. At times he pushed me out of my comfort zone, but I would say, we learned a great deal from one another. 

Quote of the day: We are our pet’s Heaven and just because their physical body is no longer alive, it doesn’t mean their soul loves us any less. We are loved from beyond, and always will be. ~ Lyn Ragan

Today was quite the day! When I came downstairs there was a terrible beeping noise. It did not stop and just continued to get worse. I deduced it was from our alarm system. I frankly did not know what to do! I have many of these moments when I say..... I HAVE NO FREAKING CLUE HOW TO HANDLE THIS! I could flip out, but it would serve no purpose, because I have to be the adult on duty 24/7! 

I decided to get on the computer and do a live chat with our alarm company. I got connected to a lovely man. He helped me for 40 minutes. He was telling me to do certain things, and my response was.... HOW DO I DO THAT? He had great patience and with his assistance, I figured out the problem and corrected it. In the past several days, I have had to reach out to many professionals through live chat and each one, was very helpful. It is hard tackling things I don't know, but I am trying on manage each issue that arises. 

Last night, my mom and I watched a 1947 movie, Great Expectations. I had never read this Charles Dickens novel, but my mom can recall going to the movies with her mom at age 10 and watching this movie. It was fascinating hearing her recall her trip to the movies as well as my grandmother's reaction to the movie. Dickens' story is powerful. If you have never seen the movie, it is worth the investment. It has a huge moral message. What I took away from this tale is that life is filled with expectations, but sometimes what we expect and want isn't always what it is chalked up to be. Specifically what matters most in life and the source of happiness does not come from improving one's social class, wealth, or status. We all may want to re-invent ourselves at times, but this transformation will never be successful if we find ourselves compromising our core values, our loyalty, and love for those who matter most in our lives. 

Trailer to the 1947 movie: