Saturday, October 1, 2022

Saturday, October 1, 2022

Tonight's picture was taken in September of 2005. Mattie was three years old and that weekend we went in a row boat on the Potomac River. Peter took Mattie on the water often in the Fall and Spring. But that day I was included in the fun and naturally with me came my camera. Mattie loved being on the water and was fascinated by boats. So much so that he would tell everyone that he was saving whatever money he had to buy a boat. Most people thought he meant a toy boat, but what Mattie meant was a real life sized boat. 

Quote of the day: When we honestly ask ourselves which person in our lives means the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. ~ Henri Nouwen

On Tuesday morning, I did brain games with my dad, his 15 minute walking routine, and then his physical therapy regimen. After which I put him in his recliner to rest. About thirty minutes later I walked passed his chair and thought I saw something on his face. I couldn't tell what it was, so I went closer and noticed a welt the size of a chicken egg over his left eye. I also noticed a pinpoint-sized dot in the center. He wasn't complaining of itching, which he frequently does. So to me it wasn't a mosquito or fly bite. I deduced he was bite by a spider. I put topical Benadryl on it and iced it. But as of today, the swelling isn't getting better. Instead, I would say that his eyes are so puffy, he can hardly open them. 

Given all the people I have taken care of, I have to be part doctor. Or at least find a way of getting answers. I concluded that my dad developed hives and angioedema from the spider bite. Hives usually itch, but they may also burn or sting. They can show up anywhere on your body, including the face, lips, tongue, throat, and ears. They range in size from a pencil eraser to a dinner plate and may join together to form larger areas known as plaques. They can last for hours, weeks, or even years. My dad has a huge welt or plaque above both of his eye brows. 

Angioedema is different. The swelling happens under the skin, not on the surface. It’s marked by deep swelling around the eyes and lips and sometimes of the genitals, hands, and feet. It generally lasts longer than hives. It basically looks like he has two sacs filled with fluid under his lower eye lashes. 

Allergic reactions, chemicals in foods, insect stings, sunlight, and medicines can make your body release a chemical called histamine. Histamine sometimes make blood plasma leak out of small blood vessels in the skin, causing hives or angioedema.

As of last night, my dad has been on oral Benadryl. It makes him VERY tired, sleepy, and out of it. But I feel it is necessary to bring down the swelling and redness in his face. This morning, I sent his doctor a text message. I gave him six hours to respond and then I picked up the phone and called him. He was driving for six hours, which was his explanation for not calling me back. In any case, he feels I am doing all the right things and I should monitor my dad for fever or worsening of symptoms, which may require antibiotics due to infection. 

While managing this, I also took my mom to a craft fair and farmer's market today. I left my dad home with Peter. Naturally he slept the entire time I was away. It was a rainy and damp day, but in comparison to our Florida friends, we have nothing to complain about. I then took about two hours or so to focus on a power point presentation I am trying to develop for a webinar this month. It is coming along VERY slowly. I chalk it up to be exhausted, but I try to push ahead since it is due on Wednesday. 

Friday, September 30, 2022

Friday, September 30, 2022

Tonight's picture was taken in September of 2007. Mattie came home from kindergarten that day with this creation! I enrolled Mattie in an after school program called construction club. The club was run by his teacher and this was an activity Mattie absolutely loved. His teacher collected everyday objects and the kids had a great time assembling them in creative ways. By that time, Mattie was a glue gun champ, as he learned this skill in preschool. I can't tell you how many creations came home with him that year. When Mattie was diagnosed with cancer a year later, he took the lessons he learned in construction camp and built all sorts of things with objects found at the hospital. 

Quote of the day: Walk on, walk on with hope in your heart and you’ll never walk alone. ~ Rodgers and Hammerstein

Last night my mom interrupted a conversation Peter was having with my dad. She really did not know what they were talking about. Instead, I notice she sometimes makes up things and she snapped at Peter. 

Most times Peter and I can absorb the stuff coming at us. But there are times it isn't possible and the only thing one of us can do is either start screaming or walk away. Peter chose to walk away and of course I had to have a conversation with my mom about her behavior. The whole thing is exhausting. Which is why when I received this beautiful photo from my friend in California yesterday, it made me smile. Her husband was admitted to the hospital recently. While walking through the hospital hallways, she saw this and thought of me. That alone makes me smile. 

The message is simple, beautiful, and meaningful. I do believe that no matter what we are going through, we can always have a ray of hope. It is within this ray of hope that miracles can be found. 

For example, when Mattie was diagnosed with cancer, we were dealing with what felt like the impossible. But given we had an amazing support system inside and outside of the hospital, this gave us the strength and hope necessary to keep the faith. Our greatest miracle (saving Mattie) was not achieved, but it was within this nightmare and during our greatest loss that I discovered the beauty of those around me. 

When I look at the windows at night, this is a typical occurrence. We have a family of deer that visit us nightly. They particularly love our roses. 

This gal came right up to our front door. 

Thursday, September 29, 2022

Thursday, September 29, 2022

Tonight's picture was taken in September of 2007. That day we took Mattie to the ballpark to watch the Nationals play. I honestly do not remember getting ice cream at the park, so this photo jogged my memory. Unfortunately for Peter, Mattie took after me in the sports department. We would go with Peter, but we weren't interested in the game. Instead we preferred people watching and taking in the sights and sounds in the park!

Quote of the day: Only people who are capable of loving strongly can also suffer great sorrow, but this same necessity of loving serves to counteract their grief and heals them. ~ Leo Tolstoy

This morning I woke up and found several photos that were text messaged to me. The wonderful researchers we work with are in Barcelona and were presenting on the Psychosocial Standards of Care! I hear that Mattie Miracle was mentioned and acknowledged. Wonderful news and a great way to get our name known in this international forum!

This is Dr. Anne Kazak. We have been working with Anne since 2010, shortly after Mattie died. When Mattie died, we were broken and we were dealing with symptoms and issues that were hard to describe. Being an educator by heart, I started researching what we were experiencing and that is how I found Anne and her pioneer work on medical traumatic stress with parents of children with cancer. Anne's work resonated with me, so much so that I emailed her. I never thought she would respond, but she did. We exchanged many emails and then moved to phone conversations. From these conversations we then asked Anne to be the scientific chair of the psychosocial symposium we held on Capitol Hill in 2012. The rest is history. It is thanks to our connection with Anne that wonderful things happened, and we are honored to have partnered with her on ground breaking psychosocial research.  

We had a long day. My dad had physical therapy and then we took him friend, John, out to eat before taking him to the airport. John has visited from England for seven days. 

Pictured with me is Cheryl. Cheryl is our outstanding server and now friend at Willow Creek. A restaurant in Ashburn, VA. Though Cheryl wasn't working today, she came in to say hi to us, to meet John and to make sure we got a good table and were well taken care of. She is truly a loving, kind, and spunky soul. I am grateful to be connected with her and I think our personal connection with her is very good stimulation for my dad. 

A photo of all of us tonight. John used to work with my dad. They have known each other 41 years. He made this trip to see my dad, and I appreciate his desire to spend time with us and to celebrate their long friendship. 

Wednesday, September 28, 2022

Wednesday, September 28, 2022

Tonight's picture was taken in September of 2006. As you can see, Mattie was in the kitchen building a structure out of tinker toys. The funny thing about Mattie was he followed me around. If I was working in a particular room, sure enough, he was also there. My kitchen wasn't very big in the townhouse, but we always made Mattie's creative play work! Prior to having Mattie I really did not take much interest in cars, trucks, trains, planes, the outdoors, and Legos. However, I got up to speed quickly and now I prefer being outside to inside on most days. 

Quote of the day: Grief is in two parts. The first is loss. The second is the remaking of life. ~ Anne Roiphe

On September 28th, I always acknowledge my maternal grandmother's birthday. If my grandmother were alive today, she would be 115 years old. This photo was taken at my grandmother's surprise 80th birthday party. Pictured with her was Marian (a friend of my mom's) and Karen's mom (my lifetime friend). 

My grandmother was a very kind, sweet, and gentle soul. She was a born caregiver and took this role seriously without ever complaining. Truly remarkable. My grandfather died from colon cancer before I was born. So by the time I was on the scene, my parents and grandmother were living together in the same house. As a child I thought everyone lived in a multi-generational household. I am glad I did, as I learned a lot from my grandmother and in many cases viewed her as a second mother. 

I had the usual routine today, of getting up early and getting my dad washed, dressed, and downstairs for breakfast. Peter then took my dad to the memory care center and I drove my mom to Rockville, MD for neuropsych testing. It was about a 45 minute drive each way. I was invited into the session with the psychologist for the first hour. She asked both of us questions about my mom's medical history and issues we are noticing with movement and cognition. Naturally I observe issues very differently from my mom. I expressed to the psychologist that this is hard to have these frank conversations with my mom present and I tried to make my mom understand that what I was sharing was out of concern and the responsibility that I feel I have to ensure her safety and quality of life. I liked the psychologist a lot and ironically she happens to be the daughter of my neurologist. She was easy to talk with and I could see she made an effort to relate to my mom and views herself as a strong willed woman too. So the therapist and my mom were in good company. After I left the room, the psychologist tested my mom. 

My mom underwent neuropsychological assessments for an hour to identify the extent and severity of her cognitive and behavioral impairments. The testing determines a pattern of relative cognitive strengths and weaknesses, which indirectly yields information about the structural and functional integrity of her brain. My mom completed standardized tests to evaluate cognitive abilities such as attention, memory, language, processing speed, visuospatial, and executive functions. After the test was done, the therapist told my mom she did well. We shall see what that translates into when I get the report. But what I do know is cognitive testing on paper doesn't always equate to actually working with the person in every day life. 

I say this because my dad may know who the president is, what month it is, and even the season. Therefore on assessments he can look higher functioning than he is! However, if you ask him whether he ate lunch yet, or what he ate for lunch, or where he went yesterday and he will have NO IDEA! NONE!!!! 

While my mom was taking her battery of tests, the psychologist asked me to complete two assessments. One was the Instrumental Activities of Daily Living (IADL) Scale. This scale is used to assess independent living skills of an individual and measures functional ability as well as declines and improvements over time. 

The test measures eight realms of function through self report. This is done by evaluating a more complex set of behaviors like telephoning, shopping, food preparation, housekeeping, laundering, use of transportation, use of medicine, and financial behavior. The higher the score on the scale, the better the functioning.

I am happy that all the testing is behind my mom now and it is my hope that the neurologist will enlighten me to the issues I am seeing. I am just stunned with the fact that my mom was walking just fine in April of 2021, but by November of 2021, she was hunched over and taking small, shuffling like steps.   

Tuesday, September 27, 2022

Tuesday, September 27, 2022 -- Mattie died 678 weeks ago today. 

Tonight's picture was taken in September of 2006. Mattie was four years old and as you can see was trying to play with Patches, our calico cat. Patches was great with Mattie and she just understood from the moment we brought him home from the hospital, that he was important, and she had to behave around him. Of course when Mattie was a toddler, he did try to chase her and pull her tail. I corrected that right away, and instead Mattie learned how to treat her gently and kindly. He loved her and they had their own special bond. So much so that when Mattie died, Patches slept on Mattie's bed for months. Something she never did when he was alive. 

Quote of the day: This is what I like about photographs. They're proof that once, even if just for a heartbeat, everything was perfect. ~ Jodi Picoult

We had no planned activities today! I had high hopes that I would have a few hours to myself to work on a PowerPoint presentation! I must have been kidding myself. I spent hours helping my parents this morning from one task to another. By noon, I had a meltdown and told them that I actually have other things to do. Though hard to believe, since I cater to their every need from morning to night. I then tried to work at my computer for a while, but I did not make it thirty minutes before the next request came and I had to help my dad to the bathroom. By that point, I calmed down and realized there is only so much I can control. That I will get to the presentation when I can. Really my only time to myself is after 10pm. But at that point, I am exhausted and I don't have the energy physically or mentally to do much! 

I had to devote time today to making my mom two doctor appointments. Her wrist is swollen and bothering her and I wanted to get a hand surgeon on the calendar just in case her situation doesn't improve. She also wants to see our podiatrist. So of course all of this requires new patient paperwork and coordination. While managing all of this, I checked on my dad and noticed he has a goose egg sized bump on his forehead. I know he did not fall, nor hit anything, because I watch him like a hawk. He did not wake up like this and was fine after his exercise routine. So the only conclusion I came up to was he has a spider bite. I can see a red dot in the center of a large lump. I have been icing his head and I am hoping the swelling goes down by tomorrow. Thankfully it isn't itchy because when my dad gets a mosquito bite for example he scratches and scratches and causes an infection. It is truly problematic, and I just can't get through to him due to his dementia. Instead he gets fixated on itching and what should clear up in a day or so takes weeks to resolve because of his behaviors. Now I have learned that all bites need to be covered. Not with a regular band aid either, as he is allergic to latex. But with a sensitive skin (no latex) bandage. The one thing you learn with caregiving, is to be resourceful and creative. Trust me with my dad, I am constantly thinking outside the box. 

Monday, September 26, 2022

Monday, September 26, 2022

Tonight's picture was taken in August of 2007. Mattie was attending his friend, Kazu's birthday party. Mattie met Kazu that summer during camp. I will never forget that summer and the fact that Kazu was Mattie's first friend at his new elementary school. I purposefully sent Mattie to his school's summer camp so he could meet kids and establish friends before school started months later. I was successful, because Kazu and his family are still significant parts of our life today. 

When Mattie walked into the gymnasium of summer camp on the first day (in 2007), he was scared and very shy. Mattie came home that day after camp and he wasn't happy. So the next morning, I marched right into the gym with him and started looking around. Most of the kids had their clicks/groups already, but I noticed a little fellow by himself. I went over to him and asked his name. He told me his name was Kazu. I then introduced Mattie and Kazu to each other and told them it would be a great idea to stick together during camp. I took a chance on this connection and it worked out beautifully. Better than I could have ever imagined. 

Quote of the day: Unable are the loved to die. For love is immortality. ~ Emily Dickinson

This morning, I had my six month dental cleaning. Which meant I had to get up early in order to accomplish my typical routine before I had to leave the house. Every time I can get this routine done, it feels like a major accomplishment for me. Driving in the car by myself, without anyone in tow, with no other responsibilities, felt FANTASTIC!!!! It was three hours away and as I joked with the hygienist...... who knew that a dental cleaning could feel like a trip to the spa?!!! She is a lovely person and she started my day off right. 

My dentist is near where I used to live in Washington, DC. So in driving there, I pass our townhouse complex and the George Washington University, where I went to school. I saw countless students walking on the sidewalks and it reminded me..... school is back in session. Honestly (just like when I cared for Mattie) with caregiving, I have no real concept for what season it is. Each day feels exactly like the day before and the responsibilities never seem to lighten up. I remember our days living in Washington, DC and the cyclical nature of the university students coming and then going home for the summer. We no longer have this ritual outside our windows orienting me to the seasons. However, while walking to the dentist office (after parking the car), I passed countless homeless tents and people soliciting me for money. In addition, the two smells I no longer miss are: urine on the streets and marijuana. So there are some benefits to living in the country. 

Meanwhile, my dad's friend is still in town. He is here until Thursday. He originally told us he was leaving today. Given my parent's energy levels, they really can't take a week of visitors. So we had to break it to him that for the next three days, he is on his own. My dad is literally exhausted and what saddens me is that his friend is not stimulating my dad's memory, and my dad seems indifferent to the visit. I think visiting someone with dementia means that you are going to have to rise to the occasion and share your recollection of memories you share with my dad. We are all my dad's institutional knowledge now because he is like a blank slate. 

My parents have a tradition of going to Morton's with this friend. So I made this tradition happen, as we went to Morton's last night. Dinner was a disaster of grand proportion. My dad needs consistency, routine, and has to know his server. I have worked hard since December creating this consistency and finding servers at each of the three restaurants we go to, who cater to my dad big time. I think going to a new restaurant for my dad set him off, on top of him being physically exhausted. My dad practically fell asleep at dinner and then had an attack of his irritable bowel syndrome issue. I took him to the bathroom multiple times, and had to clean him and change his depends each time. I will spare you the details, but it was a mess. So much so, that it was hard to eat at all after this. While I felt I ran a marathon that night, my dad's friend thought the night went so well. All I could say is, really??? Were we at the same dinner? I have now vowed that we are not going to new restaurants and especially steak houses as my dad seems to have no energy any more to chew beef. I know my life is crazy, but all new experiences remind me of this on a much grander scale. 

Sunday, September 25, 2022

Sunday, September 25, 2022

Tonight's picture was taken in September of 2007. Mattie was out in Los Angeles and that day we took him to Travel Town. Travel Town is part of Griffith Park and it was located minutes from where my parents used to live. Ironically I never went to Travel Town in all the years my parents lived there, until Mattie came into our lives. Mattie LOVED trains and all the vintage trains at this outdoor museum are fascinating. It is like taking a stroll back in time and it provides a real hands on experience as you can tour around and inside many of the train cars. It was right up Mattie's alley!

Quote of the day: Any woman who’d ever lost a child knew of the hollowness that remained within the soul. ~ Brittainy C. Cherry

I would like to say that last night's dinner was a success! But I think the only ones who really enjoyed it were Peter and me. With every bite of flank steak that my dad took, he would chew it and then spit it out. Lining the side of his plate. I can put up with his behavior most times, but last night wasn't one of those times. He kept looking for more food and clearly did not like what I prepared. However, to look like a normal household and to make a nice dinner, it takes extraordinary effort on my part. Effort that takes energy, of which I am lacking. 

This morning, I pulled myself out of bed at 7:30am. I needed that extra hour of sleep. If my mom weren't here, I could control my morning wake ups much better, but since she gets up at 5:30am, everything in the house starts earlier. Mind you she and my dad spend a good portion of the day napping. Good for them, but once I am up, I am not going back to sleep. I would prefer if they just got up later in the morning and maybe there would be less napping? I don't know, but I can wonder! 

While getting dressed this morning, I had the radio on. I heard Miranda Lambert's song, "The House that Built Me." If you have never heard the song, I attached the YouTube link below. I haven't heard this song in a long time. In fact, it was released in 2010, soon after Mattie died. One of my friends sent it to me back then and honestly I am not sure the context why you sent it to me, but apparently it reminded her of Mattie and what I was going through. 

Now a decade or more later, I listen to it and have multiple emotions that pop into my head. I truly think the lyrics of the song are pointing to the home you grew up in. That these formative years are what build us and when losses, milestones, or tragedies occur in our lives, we return to reflect and remember what defined us and shaped the foundation of who we are! Ironically, I do not look back at the homes I grew up in as a child. Instead, the house that built me was our townhouse in Washington, DC. It was within this home, I learned about the beauty and complexities of marriage, I became a mom and raised Mattie for seven years, I studied and obtained my Ph.D., and learned how to survive through a childhood cancer diagnosis, treatment, and death. It was in this townhouse that I learned to be childless and I had to find a way back into the world, a world that I sometimes do not feel a part of.  That is a lot that occurred in one HOME. I feel it those walls of the townhouse could talk, they would have a lot to say! 

But this morning while listening to this song, I also thought about the "House that Built Me" in a different light. Not only did the townhouse help develop the person I am today, but it was within this space that I could truly be who I am. Or was meant to be. I wasn't defined by being a caregiver, and did not have the daily routine and obligations that I do now. The lyrics of the song resonate with me, and I am sure they may to whomever hears them..............

I thought if I could touch this place or feel it.  This brokenness inside me might start healing. Out here, it's like I'm someone else, I thought that maybe I could find myself. If I could just come in, I swear I'll leave. Won't take nothin' but a memory. From the house that built me.

The premise of the song is about a person who returns to a house she grew up in. She stands in front of it, and asks the current owner if she can come in. She wants to come inside because she hopes it will alleviate her brokenness and it may help her heal. These are very powerful words, thoughts, and emotions expressed through music. We all want to find our safe space where we can really be ourselves and heal. What this song makes me see is that I don't feel like myself now, and that who I am is getting lost with each day. Which is why I can appreciate why we all need on occasion to reflect on the House that Built Me.