Saturday, January 22, 2022

Saturday, January 22, 2022

Tonight's picture was taken in January of 2009. Mattie was home between hospital treatments and as you can see that day he decided to take a plastic cooler (which his medication was shipped in) and converted it into a bicycle helmet. Not that Mattie was riding bicycles at that point. But you can see he was thinking about it through his creativity. Though Mattie did his best to stay busy and engaged, it is evident to me while looking at this photo that Mattie was not happy, he was exhausted, and just not himself. 

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

• Number of people diagnosed with the virus: 70,425,438
• Number of people who died from the virus: 865,240

In my head I have determined that by spring I want the basement unpacked of boxes. In December, when my parents moved in, all 200+ boxes and bins of theirs were stored in the basement. I literally was so overwhelmed by this, that I closed the basement door and left it like this until after January 1. 

Keep in mind that I just completed a move of my own in August of 2021. Packing up our home of 27 years in Washington, DC was no easy task. Now just a couple of months later I have this task. But it isn't just unpacking things, I balance full time caregiving chores around the clock on top of this. 

As of today this is what our basement is looking like. Peter has really been chipping away at it. He has organized the boxes by zones within the basement. Peter is smart because he knows he can't overwhelm me all at once with items. Instead he brings things upstairs a little bit at a time. This gives me the time to balance caregiving and finding homes for my parents items. 

There is still a way to go, but at least the boxes aren't up to the ceiling anymore. Nonetheless, we will go back at it tomorrow. 

Given all that I did yesterday, and also falling in the bathroom while cleaning poop in the shower, I am all aches and pains today. Thank goodness for Advil, otherwise I wouldn't be able to function today. 

Friday, January 21, 2022

Friday, January 21, 2022

Tonight's picture was taken in January of 2009. Mattie posed for a photo with some of the art work he created for his hospital door. This was the outside of his door. We may have been living in the hospital, but Mattie's room was always festive, filled with activity, and art work. I remember move in and move out days in the hospital. Peter and I had about ten bins filled with our things that we needed in order to live in the hospital. One or two bins were decorations. Every time we were discharged, I would have to pack up Mattie's room and Peter would move all the bins to the car. We had the same procedure for move in days too! I assure you this wasn't easy logical wise, but we learned quickly what we needed access to in order to live in the hospital full time. 

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

• Number of people diagnosed with the virus: 70,070,539
• Number of people who died from the virus: 864,304

Just when I think the days can't get worse, of course they do. I got up this morning and literally I had to drag myself out of bed. After which I went downstairs to make breakfast. While in the kitchen, something in the refrigerator spilled all over me. So for most of the morning, I smelled like mushrooms. Then I went to grab a box of blueberries and the whole box fell all over the floor. I knew this was a sign that this wasn't going to be a good day, and I was right. 

After breakfast prep, I went upstairs to wake my dad up, shower him, make the bed, compile garbage and collect laundry. While my dad was showering, he literally pooped in the shower. He has done this before, but today's gift was over the top. Needless to say, later in the morning I had to scrub the whole thing down with Clorox, including the bath mat. While doing this, I somehow fell backward and though it hurt, I had to get up and keep on going. 

While my parents had breakfast, I ran outside to meet our gardener to discuss bushes we want planted for the spring. Now that we have a new metal fence between us and our neighbor, to me the backyard looks like a jail. I want to correct this by planting bushes/trees. In addition, we are changing the front flower bed which is in the shape of a kidney. Delightful no? We will work to change it into an oval and plant grass to correct for the kidney shape. 

My biggest bone of contention is my mom wants to go out daily to eat. They like going out at lunch time for a big meal. That wasn't a problem in Los Angeles when it was just the two of them, but Peter works Monday through Friday, so if we go out he isn't joining us. In addition, if I eat a large meal mid day, there is no way I can eat dinner, which means I am not cooking. Which also means that Peter isn't getting dinner, eating a balanced diet, and worse we aren't eating as a family. This drives me up the deep end. This is in addition to NOT having one minute to myself. I think because I am a prisoner in my own home, when I took my parents out today, I was like a ticking time bomb ready to explode. I got so angry at lunch that I literally wanted to get up, walk out, drive home and leave them there.   

Today was a very frustrating day, on top of many other frustrating days. Even if I had a caregiver for several hours this truly wouldn't help. As this is a 24/7 proposition, with no breaks, no independence, and no freedom. When I discuss the need for a break or time with friends, I am met with great opposition. So to me there are no solutions. All I know is I am dealing with so many impossible things. Not just daily tasks, the intense physical demands of caregiving, but I am dealing with a host of cognitive issues. It is the dementia that frankly could make me absolutely crazy! Crazy I tell you!

Thursday, January 20, 2022

Thursday, January 20, 2022

Tonight's picture was taken on January 23, 2009. This was a day I will never forget. Mattie was having a great deal of trouble learning to walk again. He couldn't get the hang of the front facing walker. So Anna, his physical therapist, found this posterior walker. I have no idea why Mattie was more receptive to this, but I think he thought it would catch him if he fell backward. Any case, I snapped this photo during Mattie's physical therapy session, when he took his first few steps post surgery. Unfortunately, this wasn't a trend, and Mattie never really walked again. 

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

• Number of people diagnosed with the virus: 69,149,005
• Number of people who died from the virus: 859,839

On January 20th, I always post a tribute to my maternal grandmother. She died on January 20, 1994, at the age of 86. My grandmother lost her husband to colon cancer (when she was in her 50's) before I was born. By the time I came along, my grandmother was already living with my parents. So to me a multi-generational household was normal. 

Facts about my grandma:

1. She was born in 1907, in New York. 
2. Both of her parents were born in Italy. 
3. She was the oldest of five siblings.
4. She married at the age of 16. Her husband was born in Italy and was a contractor for commercial and residential properties. 
5. She had three children. Her middle child died (Sudden Infant Death). 
6. Though she did not work outside the home, she had numerous skills. Cooking being at the top of the list. 
7. She was a born caregiver and cared for everyone in her family. 
8. She sponsored many family members to come to America and is in essence responsible for their successes and improved quality of life. 
9. She was a kind, gentle, caring, and loving person. With a very easy-going personality. 
10. She had two grand-daughters, but she and I shared a very close bond. As I was known to call her "mom."
11. Her favorite color was green. 
12. She introduced me to Days of Our Lives at an early age. To this day, I still watch it. 
13. She played the piano by ear. 
14. She wasn't a fan of chocolate (not unlike Mattie).
15. She wasn't squeamish. She could handle everything from mice to seeing blood. 
16. She did not know how to drive. 
17. She loved to read and was well informed about all current events. 
18. She was a Bob Hope and Bing Crosby fan. As a result, I have seen all the Road to.... movies. 
19. She loved lily of the valley flowers. 
20. She suffered a massive stroke in 1990, which left her physically disabled. She died 4 years later.  

Today's fiasco involved taking my parents in for a physical. In Washington, DC there was a threat of snow. But Peter assured me we would be okay and he was correct. It was the usual mis-reporting of weather in our area.

My parents had physical appointments back to back. I had called last week to get my parents in for blood work prior to their actual physical. However, the office never got back to me. Today they wouldn't take blood because my parents did not fast. I purposefully did not make them fast because I knew it was going to be a long morning of exams. As it was we were at the doctor's office for over two hours. Naturally I will have to take them back on another day for blood work. When I tried to discuss with the doctor the dysfunction at his front desk, he wouldn't hear it. I am sure if you have been following my saga through the blog with this doctor, you realize we DON'T match. 

I let my mom go into her appointment without me because I had to stay with my dad. However, after her physical, the doctor came in and told my dad and me that my mom has tuberculosis. Specifically that she had it in the past and may still have it! I literally said..... WHAT?! I asked for more information, and then literally jumped down his throat. My mom never had tuberculosis. Instead she had sepsis and was hospitalized for a month and then was diagnosed with a rare issue called Mycobacterium Avium Complex (MAC). MAC can look like tuberculosis, but it is a completely separate disease. I told him to go back to her medical reports and look closer. Unfortunately my mom didn't remember being diagnosed with MAC and it would behoove this doctor to draw me into both of their care management. 

How do I think this doctor did with my dad? I would say just okay. The doctor and I got into it regarding EKGs. I wanted my parents to both get an EKG today. They both have cardiac histories and their former primary care doctor did routine EKGs and both of my parents were under the follow up care of a cardiologist. Needless to say this doctor doesn't believe in giving EKGs. Instead he cited with me the "new" thinking that these tests do more harm than good, that they identify false positives, and also don't truly detect disease. I told him that I did not agree at all. In fact, it was a simple EKG done at my mom's primary care office in Los Angeles that identified a big problem. A problem that sent her in for emergency surgery of her left anterior descending artery, as she had an almost 100% blockage. Literally his response was he had NO IDEA what to say to me. NOT GOOD! NOT A GOOD WAY TO DEAL WITH VICKI! I am not used to a doctor NOT listening to me and my insights. Typically a doctor like this gets his walking papers, but my parent's like him. As you know, I have already decided to go back to my former doctor, as I can't take this one's quirky personality, anecdotal stories, and off the cuff inappropriate advice. Today he handed my dad a sheet on exercising that was totally coming from LEFT field. As my dad can't do anything he recommended on the sheet. Rather hysterical, no? Make a long story short, I am taking my parents to see a cardiologist and will get all my questions and concerns answered there. 

It is now 6:30pm and it is my first free moment of the day where I can sit down, write the blog, return emails, and perhaps do Foundation work. This free time won't last long, and what I could do in the past in one day, now can take me weeks. I am determined to write a Foundation January newsletter! All I can say is good luck to me. 

Wednesday, January 19, 2022

Wednesday, January 19, 2022

Tonight's picture was taken on January 6, 2009. This was what our living room looked like back then. Mattie got this cute little tree from the hospital and he brought it home and set it up as part of his train village. As you can see we had Legos, trains, and buildings all set up. This was not an unusual occurrence in our home even prior to cancer. Mattie was always active and gravitated to all sorts of vehicles. If it moved, it fascinated him. After Mattie died, it was a huge for us on so many level. Particularly not hearing him and seeing his projects in process throughout our home. 

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

• Number of people diagnosed with the virus: 68,013,571
• Number of people who died from the virus: 855,647

This morning, I got up early because I had to get myself together, breakfast made, my dad up, showered, dressed, given breakfast, started laundry, and completed cognitive exercises with my dad, prior to leaving the house at 10am. My mom had a 10:30am appointment in Arlington, VA with HealthQare for an ultrasound of her legs. If you have read my blog before then you know I am SUPER critical of most doctors and our healthcare system. Which is why when you find a well run practice, it stands out in my book. I would HIGHLY recommend HealthQare for any vascular issues. The office claims that they "deliver exceptional, patient-centered, personalized care across all service lines. When you visit our center in Arlington, you will notice a difference the moment you arrive, starting with our friendly, welcoming staff. Our center strives to be the premier source for vascular care with a focus on patient education."

This quoted line above is not just a nicety, it is a reality. They are correct, as soon as you walk in the door, you are greeted, people working in the office seem happy and want to help you! This patient centered approach wasn't just with the admin. It was true for the ultrasound tech, the physician assistant and the physician who worked with us. They allowed me to go back into the office with my mom and they conducted a thorough ultrasound both seated and standing of her legs. Honestly we were in the office for two hours. Each and every person was kind, respectful, competent, and very patient focused. This office and practice needs to be cloned. 

The good news is there is nothing vascularly wrong with my mom. She doesn't have chronic venous insufficiently like her primary care doctor suggested. Of course we are seeing a cardiologist in two weeks to rule out heart issues, but I stick with MY first diagnosis, she overused her feet in physical therapy and this caused swelling in her ankles and foot. Right now she is wearing compression soaks to help with the swelling and we will monitor her progress. But overall, she got an excellent report. 

In the process of our three hour time away from home, we both felt better. Certainly going to a doctor is not anyone's highlight, but it actually was a major change in our routine and we did not have my dad in tow. In fact, the office would not allow him to come. Only one person was allowed with my mom. So my dad stayed at home with Peter and Peter assisted him through his occupational therapy session. Needless to say, we appreciated the diversion, getting out of the house, and interacting with cognitively intact people. 

Tuesday, January 18, 2022

Tuesday, January 18, 2022 -- Mattie died 642 weeks ago today. 

Tonight's picture was taken in January of 2009. Mattie received this wonderful piano keyboard from his two favorite hospital volunteers, Jerry and Nancy. We would literally bring this keyboard back and forth from the hospital to home. As you can see Mattie was learning how to read music and play. After Mattie died, I donated the keyboard back to the hospital for other children to use in the pediatric units. 

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

• Number of people diagnosed with the virus: 67,172,295
• Number of people who died from the virus: 853,536

This is the piano that was given to us so many years ago. Probably when Mattie was four years old. Our neighbor, Susan, was moving out of our complex and told me she wanted Mattie to have this piano, so he could learn to play. The only catch was we had to move it. Which Peter and I did! 

Now all these years later, I decided to get it tuned. We found a piano tuner through Mattie's school. Therefore, to me this should be a reputable person. 

This tuner set both Peter and me off! So much so that Peter went upstairs. Peter's mom was the chair of the music department of a private school in Massachusetts. I say this because Peter has been around music and pianos ALL his life. Long story short, the tuner feels the piano is worthless and should not be tuned. She also feels because it is old and worthless, that we shouldn't even donate it to anyone. She feels that would be passing along the problem to someone else!

The tuner says pianos have a 50 year life span. Our Acrosonic spinet dates back to 1944. Meaning that it is old! I think it is a charming looking piano and also I have sentimental attachment to it because it was given to Mattie. After talking to her today, I was at first buying what she was saying. In fact, she maybe correct, but I am not in the habit of throwing away things just because they are old. Someone must be able to rehab this cutie. To me they don't make pianos like this today with fine wood.  

I started searching the internet and found this article on the Acrosonic by Baldwin. Seems to me that I am not the only one out there who thinks these cuties have potential: https://calibbr.com/what-is-an-acrosonic-piano

This afternoon, we met up with my friend Ann to celebrate her birthday. It is an adjustment for me because in the past, after Mattie died, if I wanted to meet with a friend, I easily could. Now my parents are in tow and I have to admit this is a big adjustment for me. If I go out, they want to go with me. I also admit this causes conflicts between me and my mom. 

In any case, Ann has been an incredible friend to me over the years and did the impossible when Mattie was sick and dying. I have so many amazing, thoughtful, and generous friends and my hope is they all understand what I am juggling now, because I truly can't be the friend that I used to be. Which frustrates me.  

We had lunch at Mattie's favorite restaurant today. I can't tell you how many times we ate with him in this room. It truly is hard to grasp that the room and restaurant are still here, but he is not. 

Monday, January 17, 2022

Monday, January 17, 2022

Tonight's picture was taken in January of 2009. Mattie was in the hallway of the pediatric hospital units and in the process of having a physical therapy session. Mattie's sessions were always lively and never boring. Anna, Mattie's physical therapist, understood early on that she had to engage Mattie in different ways in order for him to comply with therapy. Anna did not disappoint. Typically Mattie had an entourage of people at his sessions, this helped to egg him on and inspire him to get up, move, and in some cases compete with whom ever was attending.

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

• Number of people diagnosed with the virus: 66,198,486
• Number of people who died from the virus: 851,226

Last night while sitting in the family room, I thought I heard a snow plow. I told Peter and we both went to the windows. Sure enough it was a plow. That may not sound earth shattering, but for us it was. The first snow storm that dumped 7 inches on us a week or so ago, we did not get the street plowed. It took many days for the snow to melt and the ice to disappear. Which made for treacherous walking of Sunny and driving. 

Peter literally went out to talk to the snow plow driver. Jay was very kind and for a few extra dollars, he even plowed our driveway. A good guy, and Peter even got his cell phone number. All our streets are in great condition today, even the side streets. A total night and day difference from January 3rd's storm!

Peter and my mom got into throwing snow balls. Peter was aiming for our mailbox and apparently hit it numerous times. 

My mom joined Peter and was enjoying the snow. Something she hasn't seen in decades. 

This morning, I had Peter outside shoveling our front walkway because my dad's occupational therapist was supposed to be coming today. However, she did cancel on us because of the weather, but mid-day his physical therapist called and is coming over at 4pm today. I tried to explain to him that late in the day is not the best for my dad. So we shall see how today's session goes. In all reality, once they give me the exercises, the burden falls upon me. Therefore, I truly do not find their visits helpful. In fact, it adds to my day, because I need to be present to observe, participate, and make notes. If I don't, then my dad would have NO MEMORY at all of what he just did. 

My dad's memory loss is intriguing to me. Not only does he have a huge short term memory loss, he also has BIG lapses in long term memory. Such as he has no recollection of Mattie's baptism, Mattie's god parents or where we held the luncheon after the baptism. This is just one of MANY MANY examples. He is a shell of the person he used to be, which is a sad commentary. 

Sunday, January 16, 2022

Sunday, January 16, 2022

Tonight's picture was taken on January 8, 2009. I remember this day like it just happened yesterday. Mattie endured a very long bone scan that morning. Something that should have taken an hour at the most, landed up taking 4 hours! To prep for the bone scan, Mattie wasn't allowed to eat or drink anything from the night before. The reward for complying during the bone scan and doing it without sedation was going to the restaurant on the Hospital's campus after the scan for a special lunch. With us was our friend, Mattie's art therapists and his child life specialist. In front of us was a large hibachi grill. The chef was cooking up shrimp for Mattie and was throwing shrimp at us to see if we could catch them in our mouths. This whole notion made Mattie laugh!

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

• Number of people diagnosed with the virus: 65,599,883
• Number of people who died from the virus: 850,484

The excitement for the day was the snow. After all, my parents haven't seen snow in probably over thirty years. We took my parents out for an early dinner, so we could get home before too much snow fell. This was our drive home. My parents couldn't get over this, but fortunately Peter learned to drive in Boston, and I feel very confident in his ability to handle this kind of driving. 

The birds are flooding our backyard. They appreciate all our bird feeders throughout the yard. There is someone else in our home who also appreciates the bird action..... Indie the cat. She is memorized and sitting by the windows, watching all our feathered friends. 

A snowy backyard!