Saturday, February 19, 2022

Saturday, February 19, 2022

Tonight's picture was taken in February of 2009. Mattie was in the child life playroom at the hospital and you maybe asking yourself..... what on earth was this? Well Mattie, with the help of his art therapists, constructed a BIG roach out of model magic and colored it. Honestly it looked a lot like a real roach. In any case, that day Mattie built a beach with umbrellas for the roach. Because don't all roaches need a beach vacation? Leave it to Mattie! Believe it or not, I still have this roach in one of Mattie's keepsake boxes. I really do not understand his fascination with roaches, other than the simple fact that I hate them! Mattie loved seeing my reaction to even the mention of a roach. 

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

• Number of people diagnosed with the virus: 78,452,782
• Number of people who died from the virus: 934,865

Someone is desperate for attention! When Peter goes away, Indie is beside herself! Last night, she was on Peter's side of the bed. She truly is a very loyal and loving cat, and thankfully not high maintenance like my boy Sunny! Look at Indie's head! She loves looking at us upside down!

Peter sent me this photo! This deer was right outside his parent's kitchen window! If only Sunny were there!

It was a very busy day for me. Non-stop chores until about 2pm. I got my dad up a little later this morning, around 9am. Before getting him up, I made breakfast and left my mom at the table eating. When I got upstairs, I moved the covers off my dad and found that he had a new depends on around one leg. But NOT on! I gathered my mom handed him a new one to put on, not realizing that he most definitely can't do this activity independently. Of course seeing all these declines is emotional, but I guess I am so used to caring for people, that I compartmentalize this feeling, in order to do the task at hand. 

When my dad was finally showered and dressed, we came downstairs. At the breakfast table, I found my mom slumped over, face down in her plate. Nothing was wrong with her, other than she fell asleep right in her plate. I am monitoring my mom and her situation, which I feel goes beyond being wiped out from two years of caregiving. Needless to say, after breakfast, I insisted she go to the couch to rest. By 11am, both of my parents were sleeping in the family room. 

My dad spends more of his day sleeping than conscious. I had to rule out a cardiac reason for this, but it confirms what I already deduced..... it's his moderate stage of dementia. I am jumping back now to do more chores, but am managing with Peter away. Sunny of course perks me up and get me out, moving, and engaging with the active world. I may have rescued Sunny, but the rescuing goes both ways. 

Friday, February 18, 2022

Friday, February 18, 2022

Tonight's picture was taken in February of 2009. Mattie was home between treatments and doing two things he loved. Playing with water and eating a vanilla frosted donut. This was his one donut a day phase! From an early age, Mattie loved throwing his toys in water and creating all sorts of play schemes. All I know is life with Mattie was never boring. 

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

• Number of people diagnosed with the virus: 78,366,625
• Number of people who died from the virus: 933,743

I woke up at 6am this morning. I have to allot extra time for everything and since my mom had a doctor's appointment in Arlington, VA I had to make sure I was up, showered, dressed, able to do chores, make breakfast, get my dad up, go through his cognitive exercises, and get them packed into the car and ready to go. Our housekeeper came today and thankfully she has known me for years, because I had no time to chat with her. She is bright and could see I have my hands full. 

I did not sleep well last night thanks to intense winds and the windows rattling. I am still not used to the new noises of this house. In addition to my lack of sleep, I am dealing with a killer migraine this week. The kind where my eyes are twitching. My original plan for today was to leave my dad home with Peter, but since Peter is in Boston, I had to bring my dad to the pulmonologist appointment. Traveling with him is always a gamble, because you just never know if he will have a bathroom accident. He also tires very easily!

We got to Virginia Hospital Center without a hitch, got a great parking spot, and I was able to get my parents up to the office without incident. Finding the right parking spot is crucial, because my dad hates walking and even with a disabled parking permit, I don't always get lucky with parking. Any case, I prepared my dad that he had to stay in the office's waiting room while I went back with my mom for her exam. 

It was my dad's cardiologist who told me about the pulmonologist. I love the cardiologist, as he is very patient centered and humanistic! He was encouraging me to try this particular doctor today. He was absolutely correct. This pulmonologist gets a gold star. Do you know he spent 45 minutes with us and listened to my mom's stories about being a math teacher and high school program chairman. Not only was he listening, he was engaged and asked questions! Totally unheard for. In any case, my mom has crackling in her lungs and needs to undergo further testing in two weeks. 

After the doctor's appointment, I retrieved my dad and took him to the bathroom immediately. Then we got back in the car and went out to lunch. Of course at lunch, I had to rush my dad to the bathroom. Once I got home, I literally was working like a nut for two hours straight. Doing chores, feeding the animals, folding laundry, helping my mom with bills, helping my dad to the bathroom again, processing through Foundation Item Drive boxes that arrived today and the list goes on. It is now 7:30pm, and I just sat down for the day to answer emails and catch up on Foundation work and activities. I have taken tired to a whole new level.  

Thursday, February 17, 2022

Thursday, February 17, 2022

Tonight's picture was taken on February 18, 2009. Mattie was stuffing his mouth with a cupcake that I made. In fact, any time I went home during that period of time, I would bake cupcakes for Mattie. I would then put them in a Tupperware and take them to the hospital with us. The cupcakes were used as incentives to get Mattie to do his physical therapy exercises. Remember at that point, our hope was that Mattie's situation would stabilize and he would potentially return to school in the Fall of 2009. With that in mind, physical therapy was essential. However, Mattie's cancer treatment left him unable to really eat, he had no appetite, and therefore when he requested a certain food, we jumped through hoops to get it. So in this case, this was Mattie's cupcake phase! Mattie had various phases.... the vanilla milkshake phase, the vanilla frosted donut phase, the UZ potato chip phase, the French fry phase, etc!

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

• Number of people diagnosed with the virus: 78,265,672
• Number of people who died from the virus: 931,359

It was another day where I did not know whether I was coming or going. My dad had his physical therapist and speech therapist over today. During his PT appointment, I wanted to run to the grocery store. I am not sure how I made that happen, and I felt badly because I pulled Peter from work to help me manage the therapist appointment. I felt like I needed to scramble because Peter flew to Boston this afternoon, and therefore I prefer to do such tasks when he is around to oversee what's going on in the house.

The physical therapist annoyed me to NO end today. He suggested we buy my dad a rollator (basically a walker with four wheels and a seat). Before I bought it, I asked the therapist if I needed a particular height or size. He said NO, a standard size would do! WRONG. The rollator we bought, is too short for my dad. So the therapist told me today I need to return it and order another one. That I did not crown him over the head with the rollator is a miracle. A miracle for him!

Any case, I ran my chores and then came home, unpacked the groceries, folded laundry, and then the speech therapist arrived. Turns out she is pregnant and will not be continuing with my dad. She is the one person he really likes. Naturally! During the session, my dad's irritable bowel issue flared up and I had to take him to the bathroom mid-session. To make a long story short, after complaining to the social worker yesterday, she got us more in-home sessions for my dad. Honestly it is a mixed blessing, because managing the therapists' schedules and participating in their sessions (which is vital, because if I don't he won't have the foggiest notion what exercises to do when they are gone) is complex for me. It makes it impossible to get any work done. In fact I started an email this morning that I completely forgot about, until I came back to the computer tonight. I am scattered, frazzled, and very tired. 

The speech therapist gave me and my dad an assignment today. Why not, I need another assignment, don't I? She wants us to make a memory book together. She has got to be kidding. She wants me to go through photos, record memories, and so forth. I am not sure when she thinks I am going to do this between intense caregiving tasks, bouts of pooping, cleaning, cooking, running errands, doctor appts and the like. 

This afternoon, after all the therapists left, I took my parents out to lunch. At lunch, my dad had to go to the bathroom. So into the ladies room we went. I did hear some women grumbling about his presence, but frankly I have NO choice. He can't manage this on his own, as he can't even process the steps one needs to follow to use the bathroom. No meal is ever in peace. I am constantly on the edge and jumping to meet my parent's needs. When I drove home this evening, again, anxiety over took my dad and he started screaming while in the garage about getting to the bathroom. We did not make it in time, and he was a royal mess to clean up. I could try to describe my days in writing, but living them is a nightmare of grand proportion.  

Wednesday, February 16, 2022

Wednesday, February 16, 2022

Tonight's picture was taken in February of 2009. That day our friend, Tanja, came to the hospital to visit Mattie. With her, she brought all sorts of things to conduct an experiment. Right up Mattie's alley! Mattie loved hands on learning and given that Tanja is a teacher at heart, they got along great. Mattie's hospital room was small and tight, but that did not stop us from filling it up with things and people. 

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

• Number of people diagnosed with the virus: 78,155,272
• Number of people who died from the virus: 928,228

Today was quite the day! It was the kind of day in which I did not sit down until now..... to write this blog. I totally feel manic, jumping from one activity to the next. I am SO scattered that sometimes I start something, leave it, to jump to something else, and then I later see that I never completed the first task. It is entertaining if it wasn't so pathetic. 

This morning we had a visit from a medical social worker. I really did not have any expectation for this visit, but I would say it was helpful. Not because we accomplished anything, more because my mom and I were both listened to and heard. I could see the social worker couldn't believe that I was managing all that I do without help. I have been at it since November, when I landed in Los Angeles. Things have not lightened up for me. In any case, the social worker returns next week to further discuss resources in the community. 

After the social worker left, things just spiraled out of control. From phone calls, paperwork, coordinating schedules, dealing with my dad's bathroom needs, walking Sunny, cooking, cleaning, and also having a phone call with my parent's accountant. It isn't just caregiving, but trying to learn about my parent's bills, insurances, finances, and the list goes on. Frankly that alone could be a full time job. Everything I am doing is a full time job, and yet there is ONLY one of me, and only 24 hours in any given day. 

Tonight I am worn out, I have a migraine, and tomorrow is back to back therapy sessions. So another day in paradise. 

Tuesday, February 15, 2022

Tuesday, February 15, 2022 -- Mattie died 646 weeks ago today.

Tonight's picture was taken on February 17, 2009. We were in the child life playroom at the hospital and Mattie finished his creation. I absolutely LOVE his tree, and I have no idea what happened to this painting. Since it was so large, it was possible it never came home with us. But I would love to have it now on display in our house. A tell tale Mattie painting always had a SUN in it. I never had to prompt Mattie on this, he just did it instinctually. I also notice that Mattie painted sunflowers at the bottom of his tree. I have to believe that Mattie observed Team Mattie giving my sunflowers while he was in treatment and his observations were reflected in his art. 

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

• Number of people diagnosed with the virus: 78,013,016
• Number of people who died from the virus: 924,915

This week our Mattie Miracle February newsletter went out to supporters. One of the features of using Constant Contact for our newsletters, is that I can also program social media posts to go out that are linked to the newsletter. So today on Facebook and Twitter an update went out about our work. Specifically what was covered today were our Snack and Item Carts. We started these Carts back in 2011. So we have been running them for years. Our very first Cart was at MedStar Georgetown University Hospital (Washington, DC), and since that time we have expanded services to Children's Hospital at Sinai in Baltimore, MD and the National Institutes of Health's Clinical Center in Bethesda, MD. 

The Carts are designed to meet the needs of families caring for children with cancer and other life threatening illnesses. No matter how many times I emphasize FAMILIES, some people push back at me and ask how I can give candy and other "junk" to kids with cancer. The answer is WE DON'T! The so called "junk" is provided to families working around the clock in a hospital to provide care for their sick child. All I know is I couldn't have made it through Mattie's treatment without chocolate. However, with that said, our Carts have much more than candy on them. We have crackers, granola bars, chips, popcorn, mac n cheese, oatmeal, and the list goes on. Not to mention drinks and toiletries of all kinds. So I do not deem any of this junk, but instead necessities as families typically do not pack and think about themselves when getting a child to the hospital. 

I bring this up because today on Facebook someone posted concerns about our Carts, deeming what we provide as JUNK. If that wasn't bad enough, she then began criticizing other parents for the decisions they make about their child's nutrition while undergoing cancer treatment. HONESTLY? Does she not have anything better to do? If you are a parent whose child has cancer, the last thing you need is someone spouting off, being judgmental and telling you what's best for your child! 

I met many of these types while Mattie was enduring cancer treatment. Fortunately when accosted by such judgmental types, I would consult with Mattie's doctors. Any case, I was disturbed yet again today when I read what I read on FB. It brought me right back to 2008, when I received such judgmental comments about Mattie's diet. Mattie was emaciated and cancer treatment left him with NO desire to eat at all. Therefore, if and when he requested something like a donut, HE GOT IT! Calories of any kind to me were better than not eating at all. I still stand by my opinion and feelings and as Mattie's parent I made decisions that I thought were in his best interest. 

So our innocent posting today about our Snack Cart, led to two things.... insults about our cart (from someone who has never seen our carts) and judgmental comments to other parents about nutrition. But here's the kicker, it isn't just judgmental, but when spouting off about nutrition, this person claimed that her child survived cancer because of the nutrition she provided. ABSOLUTELY not true, but if she wishes to believe that nutrition helped save her child, fine. She can believe that, but don't make the rest of us feel badly if we provided our children with sweet treats to inspire eating. I have NO tolerance for this type of judgmental thinking, NOT THEN OR NOW. 

Monday, February 14, 2022

Monday, February 14, 2022

Tonight's picture was taken in February of 2009. I will never forget this moment in time, and this has to be one of my favorite photos. It is because this wasn't posed, it was naturally happening and was captured by Mattie's art therapist, Jenny. That day Mattie worked on several Valentine's Day surprises for me. Including this crown of hearts. What I absolutely LOVE about this photo was that Jenny caught a typical Mattie move, in which he would touch nose to nose with me and look deeply into my eyes. I could try to describe this on the blog, but to me a picture speaks a thousand words!

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

• Number of people diagnosed with the virus: 77,902,529
• Number of people who died from the virus: 922,273

This morning my dad's occupational therapist came over. Next week will be the LAST sessions he will get for physical, occupational and speech therapy THANKS TO MEDICARE. Honestly, their thinking is severely flawed, and how they think family caregivers will take over these exercises is hysterical. Naturally I will do it, but I also know my PLATE is already quite full! Medicare doesn't care about me or caregivers in general. 

For the past week, my dad has worked himself up into a silly over getting a real ID for himself, a driver's license for my mom, and to transfer their car's title to my name. Peter did all the paperwork and we booked DMV appointments for them today and took them. However, the anxiety of all of this happening was too much for my dad. Therefore translating..... he was over the top for us. 

The DMV in Chantilly, VA is an amazing experience! This is our second time there and everyone is kind, helpful, and professional. Very user friendly, unlike any nightmare experience I ever had in Washington, DC. Going to the DMV in Washington, DC was never pleasant and very stressful. My parents got everything they needed done today in less than thirty minutes. Naturally my dad was sitting for most of this time, and I was managing his process, and also checked in on my mom's process. Given that we were in separate windowed areas, I was running back and forth. But the license plate on my parent's car will now read, MOOOSH! This is what Peter and I used to call Mattie. Given that Mattie was taken in Virginia, MOOOSH seemed appropriate. 

After the DMV appointments, we went out for lunch. The highlight of my day was this red velvet cake. I assure you, sugar is necessary, given all that I am balancing. 

Shortly after getting to the restaurant, my dad said he had to go to the bathroom. While escorting him to the bathroom, he started screaming to MOVE QUICKLY. I knew what that meant. As soon as we walked into the ladies room, he started cursing, because he had an accident in his pants. Not a pleasant thing to deal with and clean up. But I come prepared with my bag. I am like Mary Poppins. Between the big bag and my purse, I am like a walking store! I think two years of managing my dad has worn my mom out physically and emotionally. She is fragile and he is a handful. Together it is the perfect storm with no end in sight. 

Sunday, February 13, 2022

Sunday, February 13, 2022

Tonight's picture was taken on February 6, 2009. This photo was from a series of photos Mattie's art therapist took of us that day. Mattie surprised me with a box full of handmade Valentine's day cards and creations. Including the crown of hearts on my head. Mattie was very proud of his accomplishments, which he worked on for hours that day, and was eager to show me each and every one. 

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

• Number of people diagnosed with the virus: 77,735,068
• Number of people who died from the virus: 919,640

After the usual routine, Peter and I went back at it in the basement today. I would say it is getting better, but to me it still looks like a warehouse of boxes and things. It is truly a feat to work our way through this. In addition to processing through items, we also worked on getting our guest room ready for my lifetime friend, Karen, who is coming to visit at the end of the month. I had bits and pieces of this bed all over the place, and finally got it together today. Of course don't ask me what the movers did with the bed skirt to this linen set. I can't find it anywhere!

After giving up in the basement, we then started to place pictures and art work around the house to eventually go up on walls. It is ironic how art pieces we had in our home in DC do not exactly go here. Mainly because of size, as the walls in the house are so much larger. Then of course I am trying to blend our things with my parents. So frankly after hours of working, I feel like I did not get too far. Nothing got hung on the walls today, after all of this.