Saturday, March 25, 2023

Saturday, March 25, 2023

Tonight's picture was taken in March of 2007. Mattie was five years old and that March we took him to visit Key West, where his paternal grandparents were vacationing. Mattie was always open to adventure and being outside, exploring nature just resonated with him. This photo makes me laugh. It was Mattie's rendition of him trying to hold up the pier!

Quote of the day: Hard times arouse an instinctive desire for authenticity. ~ Coco Chanel

I got up early this morning because I was expecting my dad's physical therapist to work with him. After I got showered, dressed, and started breakfast, she text messaged me that she wasn't coming because there was a gas leak in her home. Totally get it, but at that point I wanted to turn around and go back to bed. But of course I can't! If I stop functioning so does this household. So I pushed through my tiredness and started the morning process with my dad. 

After I served and cleaned up breakfast, started laundry, did my dad's brain games with him and his walking routine, I then decided I was going to finish this required coursework today. I want it off my plate, especially since I need to complete it before next week. I took a photo of my completion circles..... Four courses, 10 continuing education credits and completed in 11 days. Gold star for Vicki!!!

Meanwhile, though Peter is in Boston, he too is busy! When Peter was a teenager, he and his dad built this shed together. Now one of the exterior walls of the shed needed to be re-shingled! 

Peter tackled this project, and you can see his mom is helping too. Peter's mom is the only parent we have now who is fully functioning and independent. Not sure what her secret is, but we want it to rub off on us. 

The new shingles in process! Peter will paint this shed in May when he goes back up to Boston. A part of me wants to know what it is like to leave my dysfunction for a couple of days. I am glad Peter gets away, visits his parents, and I imagine for him it is freeing to be away and if I were him, it would be hard to return to our home. 

I took my parents out around 3pm today for a late brunch. I have to say it was the most chaotic experience I have had in a long time. My dad was in a fog, very remote, and at the same time highly demanding. It was like eating with a child, except this child is 87 years old. My dad needs constant assistance with tissues, things on the table, cutting food, managing his eating pace, and of course trips to the bathroom. He has no insight about anything or anyone else around him. Gone are the days of a peaceful meal, I am either eating too quickly or just giving up with the whole process. 

Today, my dad wanted to order a pork chop. Against my better judgment, I went with his request. The pork chop came, he took one bite and said he was FULL. Instead, he said the pork chop was for Sunny. I was very frustrated on many levels, because once my dad says he is full, he is ready for the meal to be over with, for all of us. But of course my mom and I just started eating. It gets to the point that I am so exasperated that I can't even speak. So I was silent for a while. When I am silent, watch out. I am much better angry and screaming than holding it all in. I did mentally regroup, but some days it is just very hard to cope. Because guess what? Tomorrow will be exactly the same. 

Friday, March 24, 2023

Friday, March 24, 2023

Tonight's picture was taken in March of 2007. That spring break, we took Mattie to Florida. Specifically to Key West to vacation with Peter's parents. On the long drive from Miami down to the Keys, we stopped at a shop called Shell World. It seemed to be full of whimsy and trinkets. Which was right up Mattie's alley! As you can see, Mattie sat on a 'hand' chair and gave me a big smile.

Quote of the day: If your heart is broken, make art with the pieces. ~ Shane Koyczan

I woke up at 5:30am this morning because if I didn't there would be no way for me to get my dad ready and to his memory care program, and my mom out the door to head to her physical therapy appointment. It was a sheer juggling act because Blanca (my long time house cleaner) came at 8:30am. Which means that my dad had to be up, washed, and dressed before she came. Of course I also had to factor in feeding Sunny and giving him chemo. Though 5:30 is not my hour, it is what I needed to do to get this house moving and functioning. 

Peter told me today, after looking at last night's nanny camera, that my dad got up at 4:30am and sat on the toilet bowl for an entire hour. None of this surprises me, but it does clearly illustrate the issues I have been observing. My dad has no idea of time and truly can't track anything for more than 30 seconds. After which, he is a complete blank slate. I am glad Peter looks at the camera each day for me, because I just can't! 

This was my mom's second physical therapy session today, after a three week hiatus because she was sick. I find that these sessions are wiping her out this week. Today she was working on steps in the session, as I find my mom struggles going up and down our step into our family room. She struggles because there is nothing to hold onto! Peter and I bought her a rock steady cane (pictured here), which we leave by the step to help her grip onto something when she goes up and down. 

Despite our best efforts, she complains that this isn't working. So the therapist suggested she use a quad cane and leave it by the step. She practiced with it in clinic today. Ironically this is what a quad cane looks like. Do you think that looks more sturdy than what we bought? I don't really see a big difference, so before getting another piece of equipment in my arsenal, I am going to attach velcro ankle weights to the rock steady cane and see if that helps to weigh it down and keep it from jiggling when my mom holds it. Honestly, I have to be problem solver extraordinaire too. 

Meanwhile, at 2pm, I picked my dad up from his memory program. As soon as he got into the car, I immediately asked him.... what were you doing in the classroom right before you came to the car? My dad had NO clue! Within that one minute walk, he lost whatever content he had in his head! In fact, I can read him the day's agenda at the center, and even those prompts do not jog his memory. His situation is quite noteworthy. 

On an aside, my mom's therapist asked us today.... what are you doing this weekend? It is a fair and appropriate question, but how do I explain to a young and vibrant woman what my daily life looks like? There is no way I can even attempt to schedule to do something with my parents. Neither have the energy, my dad doesn't have the interest, and just trying to get them out to door to a restaurant can feel like I am climbing Mt. Everest. My world and daily routine centers on tasks, more tasks, and then more after that! It is hard to describe this reality to someone who isn't a full-time caregiver. The therapist helps people every day, but it is one thing to help a patient for 45 minutes to an hour, and quite another to be responsible for two people 24/7. 

Thursday, March 23, 2023

Thursday, March 23, 2023

Tonight's picture was taken in March of 2008. Only four months before Mattie was diagnosed with cancer. That day we took him for a walk on Roosevelt Island. This was a place we practically visited every weekend together, regardless of the weather or temperature. The Island will always hold a special place to Peter and me. 

Quote of the day: Successful people demonstrate their resilience through their dedication to making progress every day, even if that progress is marginal. ~ Jonathan Mills

Peter flew to Boston today to visit with his parents for about a week. He tries to do this every other month, like I used to do when my parents were in Los Angeles. It certainly makes life challenging for both of us, as we are pulled in all directions. 

Before Peter left for the airport, he sent me a photo of the pansies in our backyard. We planted them in the fall and they are still glorious!

Peter is the cat whisperer! I never met a cat that didn't like him. Shortly after Peter arrived at his parent's house, their cat (Inky) claimed Peter's jacket. I am not sure Miss Indie is going to like this one bit when Peter returns. 

Though I manage all of my parent's care during the week, when Peter is gone, I have extra responsibilities that he takes on during the week for me. One of which is feeding and giving Sunny chemo. On chemo, Sunny is not always hungry, can be obstinate, and many times will refuse food. Of course eating is important for him because this is the only way we get him to take his medications. So now the games begin between me and Sunny. 

One of the major changes in my life since my parents moved in (putting aside freedom in my day to work and see friends), is my lack of walking, and certainly my inability to have time to walk Sunny. That may not sound like a big deal but it is both a problem for my physical health and also the connection between me and Sunny is not like it used to be. This is very sad, and it is hard to explain to an animal why the changes have occurred. I can only imagine what Sunny thinks! The only solace I take is that Sunny's energy level is not what it used to be while on chemo and he has a fenced in backyard to explore the outside. Sunny absolutely loves checking out the neighbors' dogs at the fence line and being on the look out for fox and deer. 

I am trying to plug away on this course work requirement that I am trying to fulfill in order to participate on a research grant. I am moving through these modules much slower than I had hoped! I am hoping some form of a miracle happens so that I can make some progress on it this weekend. Meanwhile, I received an invitation to review a peer-reviewed article for a psycho-oncology journal today. The article has to do with innovative research using our Standards of Care. I was very honored to be invited to do this and after checking with the editors (to make sure they did not feel there was a conflict of interest, as the Standards were our vision), I accepted the invitation. I certainly can't focus on this until the course work is done, but I find it amazing given my day to day chores, that I sometimes forget that I am a professional. Invitations like this remind me quickly. 

Wednesday, March 22, 2023

Wednesday, March 22, 2023

Tonight's picture was taken in March of 2008. Mattie came home from school that day and we went outside to our commons area in the city and flew a kite. Mattie loved kites and the commons area was the perfect space, because it always had just the right amount of wind to send Mattie's kite soaring! It is hard to believe that this photo was taken four months before he was diagnosed with cancer. It is easy to forget that Mattie was once healthy, could run, and just be a kid, as cancer has a way of leaving a permanent mark on my brain. This photo however, instantly snaps me back to a happier time in our lives. 

Quote of the day: I believe in being strong when everything seems to be going wrong... I believe that tomorrow is another day and I believe in miracles. ~ Audrey Hepburn

After a three week hiatus (because my mom was ill), my mom returned to physical therapy today. There is always more pressure on therapy days, because I have to get my dad up and ready and my mom out the door at a certain time in order to drive to the hospital. Today I learned that my mom will be doing therapy through June. Originally the plan was for therapy to end in April. So the process continues, and it is more for me to juggle!

Peter sent me this photo of a giant hyacinth growing in our backyard. Rather hysterical that I don't make the time to see it in person! But thankfully Peter keeps me connected to the outside world and also takes on the daily nanny camera reports on my dad's behavior at night. 

I snapped some photos of things I have put out around the house for the Spring/Easter season. After Mattie died, we did NO decorating. AT ALL! I neither had the interest or desire. I am not sure I do now either, but with my parents living with us, and my dad completely disoriented, I find decorating for the season is good for all of our mental states. Otherwise every day is exactly like the day before here. 

When Mattie died, I donated many of the decorations I had collected over the years. I felt..... why keep them?! I did not want to decorate and I did not have a child to pass them onto in the future. The only decorations I did keep were the ornaments for our Christmas tree. Most likely because many of them have some sort of significance. 

Peter came home with some daffodils two days ago and to me they are the ultimate sign of Spring. So I got out my trusty ribbon collection and put ribbons around each of the daffodil containers. When Mattie Miracle used to host a live Walk and Raffle in May, I needed LOTS of ribbons for our raffle baskets. I must have a ribbon for all occasions! Now our event is no longer in person, but rest assured my ribbons always come in handy. 

Our town house in Washington, DC had a room with a view, which I just LOVED. This is my new room with a view in our house. I am attracted to openness, natural light, windows, and greenery. But I snapped this photo to show you my Easter set up on the wall between our kitchen and family room. 

It has been a full day of balancing caregiving tasks, driving around, cleaning, cooking, answering Foundation emails, and now onto the course work I need to complete for the research study we are involved in! Will the course work ever get done? NO idea, but I keep pushing to meet next week's deadline. 

Tuesday, March 21, 2023

Tuesday, March 21, 2023 -- Mattie died 703 weeks ago today.

Tonight's picture was taken in March of 2009. That day the excitement in the pediatric units was the ribbon cutting ceremony for the child life playroom. I can't tell you what a God sent this room was, because when Mattie first started treatment, there was no space to play, interact with others, and just be a kid. The only space allocated before the playroom's existence was the hallways! Mattie was invited to cut the ribbon during the ceremony and one thing Mattie loved even more than building, was being given a task or responsibility! He took on this role was great pride, especially since the playroom brought him joy throughout his challenging medical existence. 

Quote of the day: No matter how much falls on us, we keep plowing ahead. That's the only way to keep the roads clear. ~ Greg Kincaid

I had a hard time falling asleep last night. I must have been tossing and turning until 2 or 2:30am. When my alarm went off this morning, I honestly didn't know if I was coming or going. Peter perked up my morning by sending me this photo of rhododendrons in our garden. Ironically, I am in such a state, that I don't even go out and look at them myself. I figure what's the point. 

In addition to my usual tasks, I am also inundated with things that I must complete before next week for this research study we are involved in. Truly without caregiving, these tasks would be a pain, but now anything in which I feel the pressure of a deadline, this causes me anxiety. Which is why I most likely can't sleep. 

This morning, I checked the nanny camera we installed in my dad's bathroom. He was up multiple times last night, and sat on the toilet for 30 minutes at a time (despite installing a clock right in front of the toilet for him). What also caught my attention is after going to the bathroom, he then headed over the sink and looked confused as to what to do. Literally he stood there for five minutes just standing there and rubbing his head. The whole picture was overwhelming to see and at some point, I may just have Peter review this camera each morning, and cut myself out of the process. The footage is very depressing, and it doesn't help my mental state for the rest of the day. 

Given that we did not have planned outings today, I changed my parents linens on their bed. It is quite a task (which I only take on every two weeks), especially when my dad uses about 15 pillows. Needless to say, I have to address their bed, when I don't have morning commitments. 

Meanwhile, Peter has been re-organizing his office space, as he begins his new job in April. When we lived in Washington, DC we had many of these plastic bins. Now they are only taking up space. Not knowing what to do with something, always inspires me to check in with the app, Next Door! 

I can't tell you how many things I have given away for free on Next Door. So we took a photo of these bins and within an hour, I had 7 people who wanted them! I just love the fact that someone else can use these great items and I do not have to worry about packing up the car and donating them. 

Monday, March 20, 2023

Monday, March 20, 2023

Tonight's picture was taken in March of 2009. I snapped this photo because Mattie built this creation out of everyday items! In fact, Mattie's art therapists learned quickly that Mattie loved boxes and other everyday items. They saved these things for him just so he could create! I can't tell you how appreciated all of this was, because when physically doing something, it helped to distract Mattie and in the process it would change the emotional tone in the hospital room!

Quote of the day: The human capacity for burden is like bamboo - far more flexible than you'd ever believe at first glance. ~ Jodi Picoult

I couldn't get up this morning. I am very tired! But by 7:15am, I knew I had to get it going otherwise my dad wouldn't get to his memory care program in time. I feel worn down and I am struggling with an on and off again sore throat. I have no other symptoms and it could simply be seasonal allergies, but it's an overall sense of exhaustion that I feel each and every day that wears me down. 

If you read last night's blog posting, you know that I am now tracking my dad's nightly movements on a nanny camera. Again, he was up at 3am, and sat on the toilet for thirty minutes, and then went through his morning routine of brushing his teeth and so forth. We purchased a clock that we will install in the toilet area, in hopes that he will be able to track time. But frankly I am a realist. My dad's memory issues have rapidly declined in a year. He can't recall what happened 30 seconds ago. 

For example, on Sunday we took my parents out to brunch. As soon as we got home and I put him in his reclining chair (in the family room), he asked.... are we going out today to eat? Understand that he literally had a three course meal and just got back home, which entailed walking from the car into the house! He remembered NONE of it! It truly is demoralizing and frustrating as his caregiver.

The days my dad goes to the memory care center, he travels with a notebook in his pocket. So he can take notes (and record one thing about his day!) Mind you he is the one who wants a notebook and I think in his earlier stages of dementia, the notebook served some sort of purpose. But now, he can't remember to take notes, has no interest in recording anything, and the only thing the notebook accomplishes is it produces great irritation to the rest of us.  

Eating is also a nightmare. As my dad eats extremely fast and my mom eats extremely slow. Though I am not a fast eater, I have to eat at my dad's pace because if I don't I will never be able to eat. When we go out to restaurants, it is a thorough show in which he constantly needs tissues (because when he eats, it always triggers a runny nose, and I am picking up tissues so others don't have to), has some sort of issue, or needs to run to the bathroom. Needless to say, I haven't had a peaceful meal since my parents moved in with us. From this chronic stressful pace, I have developed heartburn after each meal. 

In the midst of this daily chaos, I am still trying to process through FOUR courses that I need to complete to participate on a research study team. This whole process has been SO time consuming that yesterday I decided to pay for continuing education units to apply toward my license! I might as well get something for all this time! As you can see, I completed two courses and today began the third! 

This third course has 9 modules, of which I did 2 today. I can handle only about two modules a day, so at this pace I might be finished with this course this week, and the hopes is I can begin the fourth and final course over the weekend!

Sunday, March 19, 2023

Sunday, March 19, 2023

Tonight's picture was taken in March of 2009. Mattie was in the outpatient clinic of the hospital and working in his favorite area.... the art therapy corner. That day, Mattie was working on a piece of clay. He was learning how to use a potter's wheel. At the time, I had no idea that this creation was going to get glazed in red and become a mother's day gift for me. To this day, I cherish this red vase, which is currently in our living room on display!

This photo was taken in May of 2009! Mattie presented me with the finished clay product (which was started above) for Mother's Day!  

Quote of the day: We are all faced with a series of great opportunities brilliantly disguised as impossible situations. ~ Chuck Swindoll

Given the various feedback I have been receiving from my mom about what goes on at night with my dad, Peter helped me install a nanny camera in my dad's bathroom. This morning we looked at the footage, which produces live video footage every time the camera is tripped. What I discovered was my dad was up at 3am and stayed in the bathroom until 4am. Specifically he went to sit on the toilet from 3-3:45am. He was NOT sleeping while seated, he just has NO IDEA of the time. I know this problem from his daylight hours with me. I time everything he does from his time in the shower, to time in the bathroom. This is necessary because to him 45 minutes can feel like a second. In addition, he no longer has insight of physical sensation. Meaning, he can't tell you whether he has just urinated or had a bowel movement, even a second after completion. So I am not at all surprised by the data captured on last night's camera. 

I have a digital clock and calendar on the vanity for my dad. Next to it, I have a log for each day, so he can record when he went to the bathroom, brushed his teeth, washed with mouthwash, and shaved. By the time I get to him in the morning, he has checked everything off the list. But what the camera now confirms for me is that he is doing each of these activities multiple times, regardless of whether it is recorded right in front of him on the daily log. So for example, yesterday he brushed his teeth at 3:45am and again at 8am. Does any of this really matter?

Well not exactly, other than I need to understand his night time patterns and to determine if once he is done in the bathroom, if he attempts to leave the bedroom, or whether he returns to bed. So far, each time he returns to bed. I am not as anxious about my dad wandering, mainly because he is considered a physically lazy individual. He has been this way his entire adult life. He has no interest at exploring or walking around, and prefers options that involve relaxing and lying down. This trait is now the one blessing I have in the whole horrible equation. 

This afternoon, we took my parents out to brunch. We go to the same place each Sunday and our fabulous server is Cheryl. It turns out that both Cheryl and I surprised each other with Easter gifts! I know Cheryl likes chocolate and also enjoys to decorate, so I had fun putting together an Easter basket for her. Cheryl gave me many of the lovely items you see here. Frankly I wasn't in the mood to decorate for Easter, but Cheryl's gift inspired me to get it in gear and get with the season. More to come, but this is a start.