Saturday, February 5, 2022

Saturday, February 5, 2022

Tonight's picture was taken in February of 2009. Mattie was in the child life playroom that day and working on the construction of a mini volcano. While busy and creating, there was a vanilla shake sitting right next to him. The hope was he'd drink it for both fluid and calories. The treatment left Mattie emaciated and with no appetite, so whenever we expressed interest in eating or drinking, we jumped through hoops to get what he wanted. Fortunately we had an amazing support community working their magic behind the scenes. Nonetheless, I will never forget the many projects Mattie created and was involved in during treatment.  

Quote of the day: Today's coronavirus update from Johns Hopkins.

• Number of people diagnosed with the virus: 76,432,691
• Number of people who died from the virus: 902,035

We moved into this house on August 25, 2021. Since that time, I have basically been cleaning it myself. Since this is a large house, it truly has become overwhelming, especially now that my parent's moved in. Today we had our housekeeper come to clean and I have resumed her service on a regular basis. She has been working with us since 2008, when Mattie was diagnosed with cancer. Prior to Mattie's diagnosis, I did all my own cleaning. But back then, I was living in the hospital, more than I was home. At which point, our neighbor suggested that he would send his housekeepers to our townhouse to clean for us on a regular basis. It was a very thoughtful gesture. I was reluctant, but I took the help, because I needed it. So I have known our housekeeper 14 years! She does an excellent job and is very trustworthy. I wasn't sure she would come outside the beltway to our home, but she seems happy to do it. Whereas, I am thrilled to have consistent support with cleaning!

Peter this week went to Syracuse, NY for work. While Peter was there, it snowed about 11 inches. If this happened in the Washington, DC area, the city would have been closed for two weeks. But Syracuse did not skip a beat. Things were open and flights were taking off and landing. Peter got home last night around 11pm, and shared with me a special text message he received from a colleague. I naturally won't share the message here, but it is the significance of the message that resonated with me and has a lot to do with this blog. 

Peter's colleague was basically thanking him for being an outstanding boss. A boss who understands, values, and has compassion for the fragileness of life. Someone in Peter's company is in the process of losing a family member and Peter has encouraged this person to take time off. To be with the loved one and to not worry about work. That work will always be there, but right now there are more pressing and more important matters for this person other than work. It is clear that when Peter says these things, he has no ulterior motive and doesn't plan to give this person a guilt trip for missing work. Not all bosses are like this, and some say take time off, but ultimately don't mean it. 

I believe Peter is a sensitive and in-tune person to begin with, but I also think Peter learned first hand the importance of workplace support while Mattie was sick and dying. In Peter's case, his bosses said one thing, but actually felt a totally different way about him. They viewed Peter as "broken," rather than having any real insight and compassion for what he was balancing as a father dealing with childhood cancer. Mattie's cancer diagnosis and death, I believe, have given Peter even greater insight about life and what people really need from their employers when facing such a family crisis. The wonders of Mattie..... as I always say, he was our life's greatest teacher. 

Friday, February 4, 2022

Friday, February 4, 2022

Tonight's picture was taken in February of 2009. Mattie was pictured with Sally the Storybook Lady. Sally is an incredible professional, who freely shared her skills and talents with all of us once a month in the pediatric units. Mattie absolutely LOVED Sally. No matter what kind of funk Mattie was in, he was always eager to know what creative activity Sally had up her sleeves. Mattie did not invite many people into his hospital room, but on Sally days, if Mattie couldn't go into the playroom, then Sally came into Mattie's room. Even within the two by four of a hospital room we had, together they would sing and even act out plays. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 76,224,384
• Number of people who died from the virus: 900,528

I got up this morning and after getting myself together, I decided to make phone calls before making breakfast or getting my dad up. Given that it is Friday, I wanted to get a hold of the cardiology and pulmonary medicine offices. Thankfully I got through and got all the appointments we needed set up. But the whole thing took an hour! This lost hour threw off my whole morning schedule and routine. 

My dad is scheduled to take a Lexiscan next week. This is a nuclear stress test. A bit different from the usual treadmill stress test. This nuclear version avoids him going on a treadmill and actually exercising. Instead, the technician uses an IV and injects him with a tracer and agent. The agent helps to speed up the heart rate, as if one was physically exercising. The doctor feels this test is necessary to understand what is going on with my dad. In any case, my dad has a history of severe allergies to all dyes and contrast. Contrasts that are iodine based! These contrasts result in uncontrollable hiccups. Hiccups that typically require hospitalization. The last time this occurred was in 2020, when he was also dealing with urinary sepsis. Back then this was the perfect storm. The hospital gave him assessments involving contract to understand why he was so ill, but no one looked at the fact that he is allergic to contrast. Given that we are in the era of COVID, neither my mom nor I were there to advocate, and fortunately my dad lost that ability years ago.

Any case, I finally got a hold of both a nurse and my dad's doctor and we talked through my concerns. They feel that these agents are very different from contrast and that he should be fine. But what I also did was I got them to write in the orders that I am allowed into the procedure room with my dad. It is a 3-4 hour test, so in reality, they will be grateful to have me there, otherwise, they will be dealing with his incessant questions and potential need to go to the bathroom. It is me who is doing them a favor. 

After I got my dad washed, dressed, and completed breakfast. It was time to do his exercises. I frankly just did not have it in me today. As I had to walk the dog and do other things. So my mom did his exercises with him. I think this was actually very good for her to do because she can see the profound decline in my dad's memory and thinking. Not that he is good at covering it up, but when doing his cognitive exercises you blaringly see that he can't really process information nor retain it beyond a kindergarten level. 

Walking Sunny, even in the rain, is important for me. I need to get out of this house, not be meeting someone's demands for 45 minutes, and what I realize about myself is that I have a lot of angry and hostility. At times I just want freedom to do what I want to do, when I want to do it, and with whom I want to do it with. 

Thursday, February 3, 2022

Thursday, February 3, 2022

Tonight's picture was taken in February of 2009. I don't know if you find this photo as humorous as I do, but this was a typical physical therapy session with Mattie. I was used to this back when Mattie did occupational therapy as a toddler (pre-cancer). Mattie never would do something, unless I did it first. I don't think it was because Mattie wanted to see me work. It was more like testing the waters. If I could do it and thought it was okay, then he would then proceed to try it. This perspective carried through to his time in the hospital. However, not only did I have to do, he got Anna, his physical therapist, to do it too! As you can imagine, Anna wanted Mattie to do a game of Twister. Mattie wasn't going to sign up for this, unless we did it first. So naturally we did it!!! 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 75,954,167
• Number of people who died from the virus: 896,496

Last night, I had finished cleaning up dinner and had just decided to sit on the couch. That moment of peace did not last long, because my mom came down from her bathroom and told me she wasn't feeling well. In addition to not feeling well, she coughed up blood. She was scared, but we also know she has a long standing lung condition called Mycobacterium avium complex (MAC). MAC is a group of bacteria related to tuberculosis. These germs are very common in food, water, and soil. Almost everyone has them in their bodies. When you have a strong immune system, they don't cause problems. But they can make people with weaker immune systems, very sick. My mom developed MAC from caregiving intensely for her mother, who suffered a stroke. Though my mom for the most part is healthy, at times this infection flares up. 

So at 10pm, I called their doctor, who many of you reading this blog know that I call him Dopey Doo. When I called him, his response was he couldn't help. That I should call her pulmonologist. Wonderful, if she had one in Virginia. So I corrected him and reminded him ONCE again that my mom in new to the area and doesn't have this kind of specialist yet. Therefore, I demanded he prescribe her antibiotics. He did comply, but finding a CVS open at that hour in my neck of the woods is hard. There is only one nearby open 24 hours and when I called them, they told me it would take 4-5 hours to fill the script. Because they were that busy! I literally told the pharmacist to forget it and instead called my CVS in Arlington, VA. A CVS I have gone to for YEARS! This is an incredible CVS, that is always well run and well stocked. I learned this back when Mattie had cancer. That CVS had access to drugs that others do not. In any case, the CVS in Arlington actually answered the phone and the pharmacist within minutes filled the script. Thankfully Peter ran out for me and picked it up, which is a twenty minute drive there and a twenty minute drive back at that hour!

Meanwhile today I had my mom rest at home, while I took my dad to visit the cardiologist. I always go into these situations ready to do battle. But I highly recommend Virginia Heart. Everyone, from the office staff, to the nurses and the doctor we met with were very patient centered! What a concept. The doctor is the chief of cardiology at Virginia Hospital Center and happens to be Italian. He and my dad got along great. The doctor also went to Boston College, so as fellow BC Eagles we connected. He listened, treated us as part of the medical team, and has a solid plan of attack to figure out what is going on with my dad. My dad will undergo an echocardiogram and a Lexiscan (stress test) next week. But today's EKG was normal and we were very pleased by that news. In any case, I feel like we have an excellent and competent cardiologist on our team, and I liked him so much that I changed my mom's appointment, so she could work with this same doctor. 

Wednesday, February 2, 2022

Wednesday, February 2, 2022

Tonight's picture was taken in February of 2009. I will never forget this moment in time. Mattie and I entered the outpatient pediatric cancer clinic and his art therapists greeted us with a project. They were asked to design a welcome sign to the in-patient pediatrics unit on the fifth floor. However, they wanted to include handprints of several of the children on the sign. They were expecting Mattie to quickly jump into this project, since he loved creating. But that invitation did not intrigue him until his therapists said... well how about a footprint? Mattie jumped at that chance, and I captured the process. To this day, this sign is still on the fifth floor of the hospital, featuring Mattie's footprint. I am sure most people have no idea or even think about whose footprint is on this sign, but to me, a piece of Mattie greets all the children who are treated on that floor. 

Quote of the day: Today's coronavirus update from Johns Hopkins.

• Number of people diagnosed with the virus: 75,571,752
• Number of people who died from the virus: 893,526

Today was not a good day, period. It started with my usual tasks. But this morning a new physical therapist was coming to evaluate my dad. He was coming because I complained to the health care company. I told them that the previous therapist assigned to my dad could only work with him after 4pm. Not a good time for my dad, because as the day goes on, he fades mentally and physically. Mind you he isn't particularly strong in the morning either. Any case, to appease me, they sent another therapist to evaluate my dad, and he was scheduled to come at 11am. 

Fred showed up on time and he did do a very good re-evaluation of my dad. He compared how my dad did today with evaluation notes from January. My dad is making some progress, but what they can't see is the significant decline in him from the Fall of 2020 and Spring of 2021. During those times, we got my dad to walk twenty minutes consecutively. Now we are lucky if he will walk more than five minutes. I caught the first thirty minutes of my dad's session today, and Peter did the last thirty minutes. I had to hop on a conference call that I committed to at 11:30am. 

The schedule here is what it is. What set me off today was the conference call. Particularly the fact that everyone went around to highlight what they are working on, their accomplishments, and basically how busy they are. When they got to me, I explained that I have in essence become a full-time caregiver to my parents. My story and life look very different from the people on the call. They truly had NO appreciation for what I am balancing and their solution they offered me (though I wasn't looking for one) was to hire people to handle all these tasks. 

Honestly I wonder how stupid people think I am? Do they think I haven't thought this through? Perhaps there are reasons that I am not pursing this right now. I remember when I was conducting my own family caregiver research for my doctoral degree, that caregivers would tell me how much unhelpful input and hurtful things people said to them about their roles. I naturally listened, absorbed what they were saying, and empathized. I am no stranger to caregiving both professionally and personally. Even when caring for Mattie with cancer, I got mouthfuls from people. It was very hard taking all that in back then and I honestly do not know how I survived that time in my life either. 

But I wasn't prepared to feel this way with today's call. What it stirred up in me was irritation, anger, and the desire to severe everything I am doing right now..... from caregiving to Foundation work. Instead of having a meltdown, I was greeted with more tasks.... cooking, cleaning, grocery shopping, walking Sunny and the list goes on. What I would say is that caregiving for a child with cancer versus a parent is quite different. Caring for a child (even one with cancer) is a natural part of life, but caring for parents is not expected. All I know is non-stop tasks and demands impacts my personality, how I feel about life, the future, and in the process I can see why caregivers have told me in the past that they lost or forgot who they were in the process. 

Tuesday, February 1, 2022

Tuesday, February 1, 2022 -- Mattie died 644 weeks ago today. 

Tonight's picture was taken in January of 2005. Mattie was almost three years old. You know Mary had a little lamb, well if I were Mary, my lamb would have been Mattie. Mattie loved following me around and being where ever I was. That day I was working in the kitchen and Mattie wanted to participate. So I lifted him up on the counter to be a part of things. When I look at this old kitchen set up, what quickly comes to mind was when Mattie had cancer and was in the hospital undergoing treatment, our complex came into our kitchen and updated our cabinets and countertops. When I came home, I was stunned. It was so nice to have this done, when not around, and the upgrade was deeply appreciated given what we were managing. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 75,269,655
• Number of people who died from the virus: 890,040

Today was another whirlwind. I got up, got myself showered and dressed and then went downstairs to make breakfast. My mom showed up soon thereafter, and we made some phone calls about bills and statements. I then quickly went upstairs to wake my dad and help him shower and get dressed. While he was physically in the shower, I was running around upstairs making my parent's bed, picking up trash in bathroom garbage pails, and even took on cleaning out Indie's cat litter box. Once I got my dad downstairs, it literally was one thing after the other after the other. 

I had to prepare my dad for the fact that TWO therapists were coming today... occupational and speech. I try not to schedule things back to back for him, but this health care agency and I are NOT on the same wavelength. I really think the notion of having two appointments spiked his anxiety. With that, of course triggered his irritable bowel syndrome. I cleaned up three times after him today in the bathroom, and because I was jumping around, it took me about two hours to eat a bowl of cereal and fruit. Frankly at one point, I wanted to take the cereal bowl and throw it against the wall. That is how frustrated I get sometimes. But I kept it together. 

During my dad's occupational therapy session, the therapist got him to walk with his walker for ten minutes consecutively. Once he stopped moving, he was huffing and puffing. The therapist then measured his oxygen level and took his pulse. His oxygen level was fine, but his pulse made NO sense. It should have been over 100, and yet it was in the 40s, which was counter intuitive. It was the therapist who asked if my dad has heart issues. She said it today and the podiatrist said it yesterday. That was enough! I called his primary care doctor and demanded his help in getting my dad a cardiology appointment this week. As the appointment I scheduled for him was in March, which in my opinion is too far away. 

When talking with the doctor, I got my parent's blood test results. My mom is fine, and my dad has many things elevated that are in need of management. The speech therapist showed up about 90 minutes after the other therapist. She too is wonderful and is working with my dad on memory strategies. Today's strategy has the acronym... WRAP. Writing, Repeating, Associations, and Pictures. Ironically I may not know this acronym but I have my dad make associations and to visualize things in his head in order to remember things. Clearly I am on the right track! 

While balancing the speech therapist, I had the mobile dog groomer over, and also my mom went out for the first time today by herself to CVS. That too triggered a great deal of WORRY in my dad. He asked me many times why I let her do this! Mind you CVS isn't far from the house and I told my mom that if she got lost to call me. I wrote down directions for her and also programmed the GPS on her phone. Meanwhile, on top of this, while the speech therapist was over, I got a call from the primary care doctor, the cardiologist office, and of course at the same time my dad had to run back to the bathroom, and had a pooping accident all over the floor. I could see the therapist was looking at me and internally saying..... how do you managing all of this? NOT sure, but some how I am still standing. Frazzled but still standing, and Sunny even got a walk in. The walk may have been at 4:30pm, but it happened. As I feel that walking is important for both of us. 

Monday, January 31, 2022

Monday, January 31, 2022

Tonight's picture was taken in January of 2005. Mattie was three years old and enjoying his bath time. By the time Mattie was a toddler, he started to LOVE bath time. Not because he was getting clean or liked how the water felt. Mostly because he loved to play in the water. He brought all sorts of toys into the tub and his creativity was endless. He went from a child who hated the feeling of water, to one who absolutely loved it. So much so that if I did not pull him out, he would stay in the tub for over an hour until he was water logged. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 74,741,586
• Number of people who died from the virus: 885,801

I got up earlier this morning so I could get myself together, make breakfast, manage my dad's routine, and get him to the podiatrist appointment on time. Since my dad developed diabetes years ago, he has needed the support of a podiatrist to manage his foot care. Ironically when my dad was hospitalized in 2020 for sepsis and then an impacted colon, he lost a lot of weight, and with that he no longer has diabetes. Of course we had blood work done last week, and I will be curious to see if his sugar levels are still stabilized. 

My dad's dementia requires a lot of patience. He will ask the same question about a thousand times. Especially if he is anxious about something. So over breakfast, he asked me about twenty times what time his appointment was, where the doctor was located, and when we were leaving. Of course no meal is complete for me without jumping up and taking my dad to the bathroom. The notion of a meal in peace is LONG GONE. The non-stop questioning today was so overwhelming that I literally left our house thirty minutes early just to get my dad in the car to manage his anxiety. 

However, before heading to the doctor's office I had to go to the post office. Which is about five minutes from our home. Once at the post office, my dad had lots of questions about directions to the doctor's office. Keep in mind that I am directionally challenged on a good day and I am NOT familiar with my new neighborhood. When I moved in August, my entire time at the house has been focused on fixing it. Which meant that I haven't had time to explore where I live, much less understand how to get from one place to the other. That notion alone makes my dad very nervous, and therefore, he practically insists that I use the GPS in the car to get around. 

I left my mom at home and I took my dad alone. Fortunately I had good parking karma and got a spot close to the building's entrance. My dad has never been a walker and now a days, just getting him up and showered seems to be as much exercise as he can manage in a day. He is constantly out of it and exhausted. In addition his feet and ankles are swollen. However, this is not a new occurrence, but I have made a mental note of it over time, and now added to this he gets out of breath easily and has chronic exhaustion. I have insisted that my dad see a cardiologist, which we are doing in the beginning of March, but the foot doctor today also mentioned the notion of congestive heart failure to me. So I have got to get down to the bottom of this with someone who actually knows what they are talking about. 

Despite having gone to the bathroom at home (right before we left), my dad had to use the bathroom again at the doctor's office. The office staff were lovely and allowed us to use the internal bathroom, rather than the one in the hallway. After the visit, I got my dad back in the car, and came home, just to make lunch, fold laundry, walk the dog, and the chores continued.  

Sunday, January 30, 2022

Sunday, January 30, 2022

Tonight's picture was taken in January of 2006. Mattie was three years old and that day decided to make a structure out of Legos. But not just any structure, specifically a Lego roller skate. I am not even sure whether Mattie ever saw anyone roller skating, but the notion of locomotion and movement fascinated him from a very young age. He naturally gravitated to cars, trains, planes, buses, trucks, and basically anything with wheels. I remember when Mattie was a baby, I would hold him in my arms and we would look out our big picture window. This window overlooked Route 66. Mattie was absolutely mesmerized by all the vehicles and he could watch them for long periods of time.

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 74,315,639
• Number of people who died from the virus: 884,223

Our amaryllis are in bloom. They are the highlight of the winter for me. 

This is what our basement looked like in December when my parents 225 boxes/bins were delivered. 

So this is the before photo! I honestly did not know how we were going to process through all these boxes and things. But each weekend after New Year's, Peter and I have been going at it slowly. I only do it when Peter is around to help me, because frankly I find it overwhelming on top of everything else I am managing. If it weren't for Peter, I most likely would close the basement door and try to forget that 225 boxes and bins are in the basement. 

This is the current state of our basement! Big difference no? Peter and I debate this, but I still think his job is the worst. As he opens every box, unwraps things, carries it upstairs, and then I try to put things away with my mom. Peter then piles up all the wrapping paper and debris, breaks down boxes and twines the boxes together for the recycling truck. 

I was spoiled for 27 years in the District of Columbia as our complex had huge dumpsters. I never worried how to dispose of anything. Now we have to be strategic. We even borrow our neighbor's garbage bin each week, so we can adequately remove all the materials from the house.

Another part of the basement! It is very exciting to see floor again and to be able to walk around downstairs. 

Each weekend, after working, we go out for an early dinner together. There is no way on top of all of this I can cook. One would think that going out would be peaceful, but unless you are with me, it is hard to describe the tension and stress that is in tow. I typically eat slowly, but given the host of issues my dad has, I find that I eat much faster because I never know when he is going to have an issue, and I have to jump up from the table to take him to the bathroom. I constantly feel like I am on edge. My dad also has no understanding for others around him. His focus is himself, his needs, and they must be addressed ASAP. As soon as we sit down at the table, he is anxious to know what he is going to order and literally all things stop until I read the menu with him and he decides. But I have to order for him because two seconds after he makes his choice he has NO recollection on what he just decided to eat. It is a sad commentary and such a profound change in my dad, who was once very bright, very sharp, very in tune, and in full command.