Saturday, July 9, 2022

Saturday, July 9, 2022

Tonight's picture was taken in July of 2004. Mattie was two years old and this was his second vacation by the beach. The year before, he never touched the sand and he couldn't tolerate the sound of the ocean. By the second year, Mattie wanted to go onto the sand and do what he loved best.... build! Mattie could spend hours doing this with Peter or me!

Quote of the day:. I'm going to be gone one day, and I have to accept that tomorrow isn't promised. Am I OK with how I’m living today? It's the only thing I can help. If I didn't have another one, what have I done with all my todays? Am I doing a good job? ~ Hayley Williams

I read today's quote and it left me pondering! Do caregivers truly think they are doing a good job? Is this job fulfilling? Appreciated, or makes a difference? The quote poses...... Am I okay with how I'm living today? What a great question, as I believe with caregiving (for anyone at any age) requires you to LIVE in the moment. To be very present and NOT too forward or future oriented! Or at least this is how I have learned to survive. I learned this lesson early on when Mattie was diagnosed with cancer. Nothing in life is guaranteed and the problem with caregiving is once you have figured out a routine, it quickly changes because of medical or emotional issues that arise. The lack of consistency is what adds to the complexity of caregiving. 

What I have done with all my todays (as of November 2021), looks very different from my former life. I am typically a very productive person, but when caregiving for two older adults, I hardly have a moment to myself to focus, concentrate and do anything. Any free time, which isn't much, is designated to chores, or showering, and sleeping. It is quite a commentary and sometimes it frustrates me and I am left asking.... what kind of life is this? The problem with all of this of course is if I am NO longer a caregiver that means that my parents do not exist. So the alternative to no caregiving is not met with a prize or a gold pot at the end of the rainbow. 

Peter has captured some beautiful photos of plantings in our backyard. He planted this orange rose in memory of Mattie! It is stunning. 

Our canna lilies from Washington, DC. We brought them with us. The were in big flower pots and Peter transplanted them into the ground. 

Peter planted a whole circle of gladiolas. His grandmother's name was Gladys, and to me the name gladiola reminds me of Gladys. 

Tiger lilies. They were already in the backyard when we bought the house. 

The house came with MANY hydrangea bushes. There are MANY varieties of this plant. We have the typical snowball looking hydrangeas but we also have oak leaf and lace cap varieties. 

A pink lace cap!

Peter planted sunflowers. Despite the horrible rain storm last night, the sunflower heads opened up and showed their glory today. I am a huge sunflower fan and this is the first set of sunflowers we have ever grown. 

I became attached to sunflowers in 2008 and 2009, when Team Mattie gave me these flowers whenever we were home between hospital treatments. It is a happy looking flower, and it symbolizes hope, love and community to me. I feel like I now have a piece of Team Mattie in our backyard. A Team that will never be forgotten, nor will their kindness, incredible spirit, and generosity. Some things live on forever. 

Friday, July 8, 2022

Friday, July 8, 2022

Tonight's picture was taken in July of 2004. Mattie was two years old and this was his second summer vacation by the ocean. By this point, Mattie seemed able to handle the sound of the waves and though he still wasn't interested in the sand, he was intrigued. Of course despite being on the sand during a hot day, the milk sippy cup was still in the tow! I never traveled anywhere without a small cooler bag, that contained ice packs and sippy cups of milk. The sippy cup was like Mattie's security blanket. 

Quote of the day: Knocked down but not beaten. Tired but not giving up. I saw the sun peek through the clouds. Sometimes all we need is a glimmer of hope. ~ Jon Gordon

Last night's MRI was a show! I got my mom to the hospital by 8:30pm, as requested by radiology. By the time I got to the hospital ALL the parking garage gates were closed for the night! They actually close at 8pm! REALLY??? I want to know where the hospital thinks patients should park if they come after hours? I was LESS than pleased. My mom was anxious enough, and trying to figure out where to park the car shouldn't have even been on our radar scope. 

I did park outside the hospital and checked my mom into the radiology department. We filled out the paperwork and then had to walk to the MRI area. When we got there, we were called back. I explained to the person that I wanted to go into the testing area with my mom to help her change into a hospital gown and get her situated on the MRI table. I even completed chaperone paperwork for the hospital. 

The tech let me back to help my mom undress, but he refused to allow me into the MRI room. You could see my mom was visually scared and she even told him she never had a MRI before and therefore was nervous. Regardless, he wouldn't let me back, despite the chaperone paper I had with me. My mom was in the MRI room for about 30 minutes. When she came out, I asked the tech for a copy of the scan on a disk. I need that for my mom's doctor appointment next week. The tech refused to give me a disk and said I had to go to the film library in the morning. Which means ANOTHER trip to the hospital. They don't care! They have no idea or appreciation for what I am balancing! 

While in the car trip home, I asked my mom if the tech used an intercom throughout the procedure to talk with her! She said NO! He did not talk with her at all. I have taken MANY MANY MRIs for my migraines. So I know how this works. Typically techs prepare you for each segment of the MRI and tell you the duration of each segment (and what to expect). Level setting expectations is important when stuck in a MRI tube. He did none of this. So today when I received a survey from the hospital, I detailed the tech's LESS than stellar patient centered attitude and behavior. Who knows if the hospital will even read this, but my goal is to spare other patients from such an experience. 

We drove home at 10:30pm and Route 66 was a parking lot. This was the last thing I wanted to face at that hour, after a VERY long day. Literally I could have walked home faster!

This evening, I got the MRI results back and thankfully I do not see anything seriously wrong with my mom's spine and neck. Of course we are still seeing the neurosurgeon on Wednesday, but I am ruling out one issue after the other until I get a handle on what is exactly wrong with my mom. I personally feel it is neurological issue and I reached out to my own neurologist tonight for some direction and a referral. 

Thursday, July 7, 2022

Thursday, July 7, 2022

Tonight's picture was taken in July of 2004. Mattie was two years old and as you can see Mattie was NOT liking the beach whatsoever! Mattie was the kind of kid who had a sixth sense about things! Or let's put it this way, a healthy fear of the unknown. The sound of the ocean was very intimidating to Mattie. I remember being besides myself back then, as I wanted Mattie to enjoy a place we loved to visit. But I did not push it! I followed Mattie's lead. With more subsequent vacations by the water, Mattie came to LOVE IT! I learned early on with Mattie that he followed his own time schedule and that in order for experiences to be successful, I had to wait until he deemed himself ready. 

Quote of the day: Problems are not the problem; coping is the problem. ~ Virginia Satir

It has been quite the day! I first had to drag myself out of bed, get myself together, make breakfast, and then get my dad up, make their bed, get him showered, dressed, and downstairs. By 10am, I had to leave in order to take my mom for a doctor's appointment. I left my dad with Peter. The doctor's appointment was over an hour long. We needed to see him for a script for an MRI and x-rays of my mom's neck. My mom has been having neck pain, and it is impacting her balance and walking. She walks hunched over and in my opinion is a fall risk. Since she is seeing a neurosurgeon next week, I need to supply him with films of her cervical spine. 

However, while visiting the internist today, he decided to tell us that he doesn't think my mom has a cervical spine issue, but instead Parkinson's Disease. Fantastic! He laid that on us, but had no follow up on what to do about this. Frankly I will take it one step at a time. I have to rule out a serious cervical spine problem first. 

After the doctor appointment, my mom and I ran chores, then came home, put my dad in the car and we drove back to Arlington, VA so my dad could get evaluated at Virginia Hospital Center by outpatient occupational therapy. It was a 90 minute evaluation and I had to attend his sessions with him, because he has NO long or short term memory. Frankly he doesn't even remember that he was in the hospital in March to get a pacemaker placed. 

The OT was lovely, but truly not in touch with my home environment. She feels my dad is TOO sedentary and needs to do much more walking and take on chores around the house! All true, but hysterical really, as his energy level is close to non-existent. The to-dos for this week is to get him a fit bit so he can log his steps on a chart each day. She also wants him to spend less time sitting in his recliner, as she believes he should only resort to going there after dinner. If that wasn't enough to take in, she wants him to get involved in the activities we do.... such as going to the farmer's market, walking the shopping mall, etc! Truly this is down right hysterical. 

Even before dementia overtook my dad, he was never a physically active person. He always had very little interest in walking, seeing and participating in anything. So how on earth I am now supposed to motivate him is beyond me. But what this woman doesn't get is every activity she wants him to do, involves me. That means MORE work for Vicki. 

After the OT evaluation, I took my parents out for an early dinner. Then came home, did some chores, and wrote this blog. At 8pm, I am getting back in the car with my mom to drive to Virginia Hospital Center (AGAIN TODAY!!!) for her x-rays and MRI of her neck. Her appointment is at 9pm! A great hour, no? A ridiculous time, but since I need these scans done before next Wednesday's neurosurgery appointment, I have no choice. When I tell you I have driven all over the National Capital Area today, I am NOT kidding. 

Wednesday, July 6, 2022

Wednesday, July 6, 2022

Tonight's picture was taken in July of 2005. Mattie was three years old and that summer we took him to the Outer Banks, in North Carolina. On the way onto the Island we always stopped at Morris Farms! I loved the produce and Mattie loved the farm equipment. It was an excellent stop for all of us. As you can see, Mattie was all business on top of this tractor. 

Quote of the day: Presence is more than just being there. ~ Malcolm S. Forbes

Though I don't think this quote was written in the context of caregiving, it aptly applies. Being a caregiver, when dementia is involved, requires constant supervision. To be physically present! But being present is actually the easy part. Though of course this is physically demanding, however, what sets this job over the top is being emotionally present and aware. The emotional content that works its way into every hour of my role can take your breath away. 

I don't only absorb the emotions and feelings of my dad, I also have my mom. Usually one is having or expressing issues, but today it was both of them. Honestly, it is 6pm, and I am absolutely frazzled, with no end in sight. I am frazzled from hearing and managing their discontent, their unhappiness about their situation and life, and I love when my dad gets into a wallowing state of self pity. This is when he tells me he is a burden! The first time he used that word with me, I listened and tried to reassure him. Certainly I could continue to reassure him, because when dealing with moderate stage dementia, every thirty minutes is like a new day for my dad. However, today, given my mom's issues that I faced, I was not as patient as I typically am. So today, I gave my dad a reality check. 

He is wallowing because he views himself as a physical burden. I feel it is important for him to see himself as most of us do, and that is for his age he functions fairly well. He can walk, talk, and eat. Those are three pluses. I have slowly been helping him see that his bigger issues are cognitive. Which is why he goes to a memory care center three times a week, four hours at a time. His outbursts usually are a result of spending time at the memory center. He rather be home. However, I tried that for 3.5 months and no matter what I did, he slept the day away. Which I don't think is good for him cognitively or physically. Therefore I felt I had no other choice but to turn to the community for outside engagement and stimulation. I am not sure if he thinks I am parking him there by day, so we can do things without him?! 

I even asked him about this, but understand that even in my dad's heyday, he was NEVER physically active and he had few to NO interests outside of work. Therefore, even when we got together as a family or went on vacation together, he always sat, while we toured around and did things. I honestly believe this has come back to bite him, as having outside interests in my opinion is the key to surviving life. 

Any case, I did explain to my dad that the average user of the memory care center is there from 7am to 5pm. My dad is only there from 10am to 2pm (3 days a week). The rest of the time he is with me! Somehow he did not seem to know this until I explained it again. So the perception of being a burden and being disengaged from his family, even for a short period of time, is problematic for him. So he needs constant reassurance, which is another role I play for both of my parents EVERY day! 

Long way of saying.... my role is not for the meek. It requires physical and mental strength, and I would say the fact that I haven't cracked up yet is remarkable.  

Tuesday, July 5, 2022

Tuesday, July 5, 2022 -- Mattie died 666 weeks ago today. 

Tonight's picture was taken in July of 2005. Mattie was three years old and in the Outer Banks of North Carolina. For a couple of years we went down there each July. Over time Mattie learned to appreciate the ocean and the sand. So much so that we had to pull him off the beach some days. Mattie wasn't into water activities, but was more interested in building with sand. Building all sorts of creations and finding natural objects along the shore line. 

Quote of the day: You have power over your mind--not outside events. Realize this, and you will find strength. ~ Marcus Aurelius

This was our first fourth of July in our house. For the past twenty years, we have seen the National Capitol fireworks show right outside our townhouse in Washington, DC. It was very special to live so close to the National Mall and to have access to so much, without having to drive. The fireworks were definitely one of the perks of living in Foggy Bottom (in Washington, DC). 

Last night there was chaos all around us. As practically every neighbor let off fireworks. As you can see in this photo, our backyard was aglow. I wasn't thrilled and Sunny was frightened. At least in the District of Columbia we knew that the firework show would last twenty minutes and then they were over. Here, they seemed to go on all night. Which made it difficult to help Sunny. 

This morning, I opened our bedroom blinds and this is what I saw. A mother and her baby! Mattie would have absolutely LOVED this sight! At moments like these, Mattie would turn to me and say.... they are just like us! 

A close up of Bambi. Of course it is blurry, as I photographed it quickly through the window and blinds. 

While my dad was at the memory care center, I took my mom out for lunch. She really needs structure and routine and she isn't a person who likes to stay home. I try to accommodate her, which of course means I never get anything I need to do done. My mom is very emotional about our living situation. She is cognizant of all the work I am doing and this doesn't make her happy. But at this point, she is aware of the fact that my dad needs full time support and I am slowly helping her understand that she does too. When we talk about all of this, her response to me is that she has lived too long. Or that she did not do something right, because both my dad and her are quite infirmed. I hear this constantly, but there are no answers to any of this. I can only deal with the here and now and all I know is they are a full-time job times ten! 

Monday, July 4, 2022

Monday, July 4, 2022

Tonight's picture was taken in July of 2005. That year we took Mattie to the Outer Banks and celebrated July 4th on the beach. It was a special point in time, in which I thought we would have many more July 4ths together. I am thankful that we always made the time for Mattie and took him on many adventures. 

Quote of the day: Life is full of beauty. Notice it. Notice the bumble bee, the small child, and the smiling faces. Smell the rain, and feel the wind. Live your life to the fullest potential, and fight for your dreams. ~ Ashley Smith

We had our friends over today to celebrate the fourth. Ironically our neighbor was having a LARGE party! Or I should say, one of their college kids had a big backyard party, with music blaring and they were playing drinking games. Fortunately I happened to like their music. Though I wouldn't have had music blaring, hearing it reminded me of our college days. 

My friend Ann loves to swim. I love looking at the water. So while she was swimming, my mom and I put our feet in the water. It was a hot day and the water felt wonderful. 

Given my intense caregiving schedule, I rarely get outside. It takes friends visiting for me to get outside and appreciate the nature that is all around me. 

Ann in the pool. For those of you who have been reading this blog since I started it, know that Ann was our Team Mattie coordinator. We met in Mattie's preschool, as Ann's daughter and Mattie went to the same preschool and elementary school. What are the chances that Mattie would be diagnosed with bone cancer and that Ann's husband would become Mattie's surgeon?

My mom sitting by the pool. 

My buffet. I made:

• cucumbers with dill
• shrimp kabobs
• flank steak
• corn and tomato salad
• German potato salad
• heirloom tomato and watermelon salad

Sunday, July 3, 2022

Sunday, July 3, 2022

Tonight's picture was taken in April of 2002. Mattie was literally a few days old. My parents were in town and frankly I did not know if I was coming or going. I had a difficult labor and delivery, and landed up with an emergency c-section and bladder surgery. I was physically and emotionally a mess and dealing with a lot of pain. I clearly had post-partum depression and I think the hospital staff truly empathized and were willing to keep me hospitalized for longer. However, I decided to go home after five days. For all of Mattie's life, we lived in our townhouse in Washington, DC. A place that will always hold our family's memories. I remember each room, each Mattie moment, and wonder if Mattie will keep a watch over the new couple now living in our space. 

Quote of the day: What I like about photographs is that they capture a moment that’s gone forever, impossible to reproduce. ~ Karl Lagerfeld

I fell asleep last night but at midnight, I heard my mom screaming. It turned out that Sunny came up the stairs and walked into my parent's room. My mom thought Sunny had to go outside, perhaps because he was having another bout of diarrhea (from chemo). Her screaming woke me up. Since Peter hasn't been sleeping well, I addressed the problem myself. I put Sunny's physical therapy harness on and carried him down the flight of stairs. Neither Sunny or I enjoy this process. I was going to let Sunny outside and then I noticed lightning. That is why Sunny was upstairs, he was frightened. So I calmed him down and sat with him for thirty minutes until the storm passed over. Then he was fine. He is one smart and sensitive pup!

This evening after taking my parents out for dinner, I checked my email. I received a lovely message from our friend Maria. Maria works in the complex we used to live at in Washington, DC. We have known Maria for years, and she knew Mattie pre and post cancer. She has been a huge supporter of ours and she is definitely one of the people I miss seeing weekly. Maria let me know that after long renovations of our townhouse, someone is now living in it. They are a newly engaged couple! Sounds so much like Peter and me when we moved there in 1994. The world and our lives were SO SO different back then. 

Maria shared with me a link to our renovated space! I snapped photos from the web link. This is now what my SECRET GARDEN looks like! Not so secret and the garden is lost. It is a perfect outdoor space in the city and so much can be done with this space. 

This was what my secret garden once looked like. I LOVED this deck, our plantings, and of course this space brought Mattie great happiness. Hours of enjoyment and play happened here year round. Patches and Indie (our cats) also loved sitting here in the spring and summer, and were always pleased with the bird traffic our space brought in! We even received hummingbird visits!

The updated front hallway. 

The way our hallway used to look. Peter and I painted every room in our townhouse ourselves. We did this after Mattie died. I am not sure why, other than it was some sort of rebirth in our spirit. Or at least our attempt to take back control of our lives and also return to organization and a way to more effectively display Mattie's creations. 

I will always remember this long hallway wall! During Mattie's birthday, I would practically wallpaper the wall with paper activities and games. Mattie and his friends could draw, color, and write all over this activity wallpaper. We kept it up for about a week, and Mattie loved it!

The current view of the first floor. 

The way our living room used to look. I always referred to this space as 'my room with a view.' The big tree outside this window is an oak. This oak provided leaves each spring for Mattie's tent moth caterpillar collection. These moths apparently only ate oak! 

The current view of the second floor. 

What our second floor used to look like. Mattie's pictures lined the staircase. Peter gave me these photos one year as a mother's day gift, after Mattie died. I love these photos and they now line the staircase of our house. 

The master bedroom. 

This is what our bedroom used to look like! It was a great room, filled with light and this window, was like having a bird's eye view of the world. It was at this window that Mattie learned about cars, trucks, and airplanes. We would look out this window countless times when Mattie was a baby and toddler. 

The second bedroom. 

This second bedroom belonged to Mattie and then became Mattie Miracle's headquarters. This photo was taken by a photographer for The Washington Post. I remember every Mattie moment in this room, even the ones when he came home between hospital treatments. Mattie would sleep in his bed, and I would sleep on the floor to monitor him throughout the night. That was needed given that Mattie was always hooked up to IVs (even at home). Mattie's room had an incredible walk-in closet. After Mattie died, you wouldn't believe how much stuff I got into this closet! Peter built out the closet will all sorts of shelving. The closet was amazing! Not only did it contain our things, but it contained most of Mattie Miracle's paperwork and memorabilia!