Thursday, April 25, 2024

Thursday, April 25, 2024

Tonight's picture was taken in April of 2005. Mattie was three years old. That day we took him to the National Arboretum. It was one of my favorite places to visit in the month of April. Mainly because they have thousands of azaleas all in bloom. It truly is an unforgettable sight, especially coming off of winter. As most of Mattie's friends are graduating from college this spring, for me, life stopped when Mattie died at age 7. No matter how much time goes by, life for me is forever 7. I have no doubt if Mattie were alive today, he would be my greatest ally. 

Quote of the day: Love is love, I told her, as I tell all of my patients who are ashamed to find themselves shattered by the death of a dog. Loss is loss. ~ Meg Donohue

My day started at 6am. I got up early to manage all my morning chores, before the HVAC team arrived at 8:30am. When I tell you I literally had to drag myself out of bed, I am not kidding. I was told to prepare for a furnace install to take 6-8 hours. The two guys were efficient, professional, and literally within three hours that installed the unit and the condenser outside. Because strangers in the house upsets Indie, the cat, I moved her food and liter box to one of the bedrooms on our second floor. I think she was grateful! 

While the furnace was being installed, I decided to go grocery shopping while my dad's physical therapist was here. It is a chore I prefer to do mid-week when most people are at work or school. For the most part I dislike crowds and in my hyper alert stage, I need to keep moving. 

Later in the afternoon, I took my parents to Starbucks. Truthfully this is about the only place we can go to, because my mom and I are devastated and it is comforting to know all the people working at the store and at the same time, NOT have to talk to anyone. I have little to no interest in engaging in conversation. It is too taxing and it neither helps my head, heart, or spirit. Naturally whenever my dad is in tow, there is no peace. I landed up taking him to the bathroom twice at Starbucks. I assure you IBS and dementia are a diabolical combination. My parents are lucky I have a strong constitution, because after one of my dad's bathroom routines, most people would be sworn off of food for good. 

When we got back home, I settled my parents down. They napped for several hours, and I went out to our front yard. I weeded for over an hour and filled up a half of a large garbage bin. The one thing this house is never short on and that's weeds. Thankfully I find it therapeutic to pull out weeds. After yard work, I made dinner. Our meals are typically filled with laments or commentary from my mom and my dad jumping up to the bathroom. I haven't ate a meal in peace for almost three years. 

The highlight of my day, was I received this lovely pop up card from my friend and colleague, Jean. Jean reminded me of a memory we both share.... a professional conference we attended in Hawaii. 

In order to attend this conference, I flew out to Los Angeles and I left Mattie with my parents. I then continued on to Hawaii and I think I was there for about four days. I traveled there alone and I frankly will never forget that moment in time. I was on my way to be elected the President of the American Mental Health Counselors Association. With this big position, a lot of leadership was interested in getting to know me and to interact with me. I recall going out to many wonderful dinners with leaders and at that moment in time, I thought my life was headed in a particular direction. Little did I know that only a few years later, Mattie would get diagnosed with cancer. I NEVER was able to serve my role as president of that organization and my future career and interests changed overnight. Never to be seen again. Going to Hawaii was a happy and exciting time and if someone would have told me that my destination was to have Mattie die in my arms and then 15 years after that have my husband leave me, I would NOT have believed it for one minute. If only I could turn the hands of time back to that moment in Hawaii.  

Wednesday, April 24, 2024

Wednesday, April 24, 2024

Tonight's picture was taken in April of 2004. Mattie was celebrating his second birthday that day! The theme that year was trains! Take a look at Mattie's hands! One had a hot wheel car in it and the other his sippy cup of milk. These things were like his security blanket. Though this party was years ago, I recall the feelings and the day like it were yesterday. 

Quote of the day: The loss is immeasurable but so is the love left behind. ~ Anonymous

This morning after dropping my dad off at his memory care center, I went back home and then drove my mom to the hospital for her pulmonology appointment. My mom has many long standing lung issues, that she is monitored for every six months. The doctor today thought she was doing very well. In comparison to Winter 2023, Winter 2024 was a lot better for my mom. Last winter, my mom developed a lung infection and was on antibiotics for thirty days, and literally had little or no energy to do anything. Of course what the doctor isn't aware of, is my role in my mom's daily existence. He may not acknowledge that it is me keeping her healthy, but I don't need his validation.

Toward the end of the appointment, the doctor asked what we were doing for the summer. He wanted to know if we were going anywhere! I literally wanted to say.... are you kidding? But instead, I just answered that it is hard to travel given my dad's condition. The doctor has no idea that my life is a train wreck or the daily struggles that I face. Nor does he know that I haven't had a day off since my parents moved into my home in December of 2021. Imagine NOT ONE day of a break! I truly think the average person would have lost it by now. Caregiving is hard enough, but I am caregiving under the most difficult of circumstances. I truly do not know how one recovers from the catastrophic loss I am living with. 

Some days, I am sad. Some days I am angry and other days I am indifferent. On another note, tomorrow is going to a challenging day, as I have both of my parents at home and a team of people coming to install a new furnace. They were supposed to come on Saturday, but I received a call this evening, saying they could come on Thursday instead. I want to get it over with, but when I say there is no peace, no down time, I am not kidding. As my therapist says.... I live in constant hyper alert mode, which I know will have long term ramifications on my health. In so many ways, I am a walking case study on loss, grief, and trauma. 

Tuesday, April 23, 2024

Tuesday, April 23, 2024 -- Mattie died 760 weeks ago today.

Tonight's picture was taken in April of 2004. Mattie was two years old and that day I took him the Reston Zoo. I absolutely loved this Zoo, because it was small, very hands on, and designed for the younger kids. Mattie was fascinated by all the animals and enjoyed walking and running around, feeding the goats, the pony rides, and the wagon ride into the fields to see more of the farm animals. Life with Mattie was just that.... full of LIFE! Everyday was an adventure. 

Quote of the day: Not the least hard thing to bear when they go from us, these quiet friends, is that they carry away with them so many years of our own lives. ~ John Galsworthy

Just when I think life can't get anymore hysterical, today topped the list. I was running around to get breakfast made and my dad washed and dressed, because we had an air conditioning inspection at 10am. Twice a year, we pay for a service to check the heat and air systems in the house and change air filters. The technician who came was a lovely man. A young fellow, but he could see I was caregiving for both of my parents. He then told me that his first career was that of a nurse. He was inspired to do this because his grandmother had dementia. After several years, he burned out, and switched professions. What I quickly deduced was he was insightful enough to know I was balancing a lot and on my own. 

He walked me through each system today, he explained the air filters to me, and told me that he would be happy working with me every six months to keep the systems up and operational. So Elijah is now my heating/cooling angel! I need as many angels in my corner. He offered this to me because he said, literally, you are balancing too much alone and he wants to take this worry off my plate. Mind you this service comes with the contract I have with the company, so I am not paying extra for his visits. But what this means to me, is he is a sensitive man, who wants to help me. 

Unfortunately Elijah brought a major issue to my attention today. For those of you who have followed the blog for years, know that when we moved into this house, it was a nightmare. The house needed extensive repairs, so much so that we had the trades living in our house for three months. One of the things on the future radar scope was the furnace. Today, the worst news came to me, I no longer could wait. The whole furnace and AC condenser needs replacing. Dear Lord, how much more can Vicki take? 

I was in a rip roaring mood all day. When I went to pick my dad up at the memory care center, it took him about 25 minutes to come out! I knew something was up. The issue? They took my dad to the bathroom, but no one stayed in the bathroom with him. BIG mistake. He clearly pooped on himself and his clothes. They tried to clean him up but by the time he got to the car, he reeked. Naturally when I got home, I sent an email to the program director.

Soon there getting home, the person selling me a new furnace showed up. I was juggling him, everything else, and trying to prep dinner. Honestly, I ask myself, how I survive each day? I have no answers, truthfully. Needless to say, I will have workmen here starting at 7am on Saturday, and they told me to plan for a full day of installment. God give me strength, because I range from extremely angry to disillusioned and upset. 

Monday, April 22, 2024

Monday, April 22, 2024

Tonight's picture was taken in April of 2004. Mattie was two years old. He absolutely LOVED his frog sandbox, which sat on our deck for years. I can't tell you how many toys Mattie had in that box! When Mattie died, we put the frog sandbox in our commons area. I never thought that other kids would use it. When I first saw kids using Mattie's box, I felt like someone had stabbed me with a knife. It pained me to see other kids in the box, playing with his toys, and was even more fascinated that parents would allow their kids access to something that did not belong to them. However, over time, that feeling of anger and pain, turned into Mattie's joy and happiness being passed along to other children. I assure you that switch in my thinking was not automatic and it did not come easily. But I did get there. I also rationalized that others playing with Mattie's box, could never diminish or erase Mattie's memory in my mind and heart. 

Quote of the day: Every morning, I wake up and forget just for a second that it happened. But once my eyes open, it buries me like a landslide of sharp, sad rocks. Once my eyes open, I’m heavy, like there’s too much gravity on my heart. ~ Sarah Ockler

It was another busy day. My mom's physical therapist was here at 10am. I had my dad home with us today because I had a doctor's appointment at 3pm, and I couldn't juggle his afternoon pick up at his memory care center and get to my appointment in time. While my mom did her therapy, I was on the phone with insurer. I tell you I am getting quite an education in long term care insurance. 

I had to fax a document to my dad's health insurer today. I literally left my parents in the car for less than ten minutes. When I got back into the car, I smelled something! I knew that meant my dad had to go to the bathroom. He did not want to go back home, so I proceeded to take them to Starbuck's as they requested. However, despite my best efforts, my dad had already pooped in his pants, and I had a big clean up job to do! This issue is becoming a daily routine, and I assure you it is less than pleasant. Don't worry about my dad. Seconds after this happens he has NO recall of what just transpired. It protects his dignity, which is good, but it is a big WOW for me. 

I learned a few months ago that my doctor, who I have been seeing since I was about 25 years old, is retiring. Mind you she is my age! So I am still stunned she is retiring. I met with her today for my annual physical. I got my blood test results back and my cholesterol is still high. I was very dejected going into this appointment, as I have lost 20 pounds and restrict things like ice cream, cheese, and bread. Yet despite that the test still showed a high LDL (the bad cholesterol). Make a long story short, I wasn't looking at my numbers in context. In comparison to where I was last year at this time, my LDL is beautiful. It has dropped significantly and it has even decreased from 6 months ago. So though I thought I wasn't making progress, I am. I am so inundated with my parent's care that I can't even see the bigger picture of my own. 

However, when I told my doctor about my ear pressure and fluttering, she did not like what she was hearing. So I have to schedule a brain MRI soon, to rule out issues like aneurysms. My paternal uncle died from an aneurysm at an early age, so of course I will be compliant and do the test. Given my migraines, I have had many brain MRIs over the years. But now everything I experience is far more daunting, far more frightening, because I am doing it alone. I am alone!

When I was chatting with my doctor about her retirement, I literally began to cry. This is someone I have grown up with! Mattie loved my doctor too. I remember taking him with me one day for an appointment and he told me he thought the doctor was 'cute.' My doctor is retiring because her close friends invited her to live near them in Hawaii. Since my doctor is like me, without a child and husband, she felt she needed to think carefully about her future. She doesn't want a future alone, and as she was talking, I absolutely understood wholeheartedly the decision she was making. She has devoted 25 years to patient care and I told her this is now her time. That said, I don't like change on a good day. Now forget it! In any case, she has made an appointment to see me in the Fall, so we can continue to chat, check in on how I am doing, and potentially meet the doctor who will be taking over her patients. The loss just keeps on coming. 

Sunday, April 21, 2024

Sunday, April 21, 2024

Tonight's picture was taken in April of 2003. Mattie was one year old and FULLY ON! He kept me on my toes and together we learned and navigated the world together. I absolutely LOVED Mattie's smile and energy. We were very similar in personality and with Mattie's death, a piece of me died as well.  

Quote of the day: Like a bird singing in the rain, let grateful memories survive in time of sorrow. ~ Robert Louis Stevenson

I would say that both of my parents require a great deal of napping and sleep. If my dad had his way, he would sleep the day away. Of course I won't let that happen because it isn't good for his mind or body. I really think the key to managing the nightmare of Alzheimer's is constant stimulation. Which is why I enrolled him in a memory care day program in 2022. I just couldn't manage his needs on my own. After breakfast today, both of my parents napped. While they were sleeping I did laundry, worked on the Foundation newsletter, and vacuumed out my car. 

Every Sunday I take my parents out to brunch. When I returned, I headed right back outside. I planted eight basil plants, took out a hand saw and removed most of a dead pine shrub, and then planted irises that were given to me as a gift. I spent about two hours outside. Being outside is the only time I really can get away from the constant demand inside my home. Therefore it has become my therapy. I find picking up sticks, pulling weeds, and doing gardening work are about the only things right now keeping me sane. 

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!