Saturday, February 26, 2022

Saturday, February 26, 2022

Tonight's picture was taken in February of 2009. This was classic Mattie.... multi-tasking. Mattie was eating, drinking and building with sticks and his glue gun. Though we were living in a hospital room, there was always creativity coming from Mattie. His creations always filled the room and decorated the walls and ceilings. 

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

• Number of people diagnosed with the virus: 78,929,832
• Number of people who died from the virus: 948,200

I walked 5 miles today while in the house! It is like having a built in exercise routine, with the multitude of tasks that I do each day! I rarely sit still, sometimes I feel frenetic, and of course when and if I do sit down, I can fall asleep. 

For the past four days, my lifetime friend (Karen) has been visiting from NYC. This was the first time she saw our house and of course got to see first hand what I am reporting on the blog. It isn't easy being a part of our daily routine, but Karen managed through it and livened up our week. 

After Karen left today, I have sat down to process Foundation checks, return emails, and get my thoughts together as next week I really have to focus on preparing for the Foundation's virtual walk. 

But I am proud to report that Susan, a local high school sophomore, held a successful skating fundraiser for us last night. She raised over $1,500 for Mattie Miracle. Way to go Susan!

Friday, February 25, 2022

Friday, February 25, 2022

Tonight's picture was taken in February of 2009. You maybe asking yourself..... what am I looking at? These were ceiling tiles within the outpatient clinic of Mattie's hospital. One of which was created by Mattie. Anyone who knew Mattie, knew that this was his BIG ROACH. In fact near the roach was a tiny little person with a thought bubble over her head which read... HELP! To this day, I have NO idea what happened to this roach tile, but I suspect the clinic removed it, as it scared some of the children and parents. Not everyone shared Mattie's sense of humor. 

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

• Number of people diagnosed with the virus: 78,883,101
• Number of people who died from the virus: 947,417

My mom has been complaining of neck and shoulder pain. So two weeks ago I booked her an appointment for today at the Ritz Carlton Spa. The hotel isn't far from our home, making it very convenient. 

Karen, myself, and my mom headed to the hotel. They make things so easy with valet parking (which they comped) and everyone we met was lovely and accommodating. While my mom was getting a massage, Karen and I walked the mall, so I got my steps in! Then we literally waited for my mom by the spa's pool. It was warm and humid by the pool and if felt like a bit of an escape from our daily routine. 

After the spa, Peter drove my dad to us and we went out to dinner nearby. We went to a restaurant I haven't been to in about 20 years! Amazing no? In any case, we went to this steak house because my dad wanted a veal chop. Ironically not every steakhouse offers a veal chop, so I looked around until I found one. However, I would say that my dad doesn't really enjoy going out or the dining experience anymore like he used to, which was sad to see and experience. In fact when I cook at home, the next day he has absolutely NO IDEA what I cooked for dinner the day before. It just doesn't stay in his consciousness, which truly explains to me why in Los Angeles he literally could eat the same exact meal everyday. 

Thursday, February 24, 2022

Thursday, February 24, 2022

Tonight's picture was taken in February of 2009. I absolutely LOVE this photo and can remember it as if it were yesterday. Mattie was getting admitted to the hospital and his art therapist came to greet us. In front of us, which you can't see, was a ramp. Mattie literally wanted use to push him down the ramp, like a rollercoaster. There was NO way I was going to do that, but Jenny and I instead ran while pushing his chair down the ramp. You can see the hospital employee behind us smiling and laughing over this scene. 

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

• Number of people diagnosed with the virus: 78,790,210
• Number of people who died from the virus: 944,588

It was another early morning! My dad's physical therapist was coming at 10am. Therefore, that means I have to get up early to pull it all together. The therapist was coming to reassess my dad to get recertified to provide more sessions. In order to get qualified for more sessions, Medicare needs to see that progress has been made. Otherwise they see no reason to justify more services! So Fred (the physical therapist) pulled out my dad's data from his assessment in the beginning of February. 

In comparison to early February, my dad appears to be doing better in terms of standing up and sitting down, walking, and balancing. All good news and it shows that my daily prodding is having an effect. Despite the fact that he hates doing any kind of movement. 

I think the home healthcare company thinks I am scared to take my dad outside of the house! REALLY??? I moved him from Los Angeles for heaven's sake, which meant daily movement and even staying at a hotel. Not to mention I take him to doctor appointments and out to lunch. So fear shouldn't even be used in the same sentence as me!

This evening, Karen (my lifetime friend) is working on sorting the toiletries that have come in for the Foundation. I was going to get to it, but she started it for me. I find starting it is always the hardest part!

Get the picture! Mixed within today's deliveries was an actual gift of goodies for me! Thank you Jean for my treats as well as supporting the Foundation. 

Wednesday, February 23, 2022

Wednesday, February 23, 2022

Tonight's picture was taken in February of 2009. We were right in the middle of the hospital hallway. Not an unusual occurrence. As we did many of Mattie's physical therapy appointments right in the midst of chaos. It did not bother Mattie at all, it got us out of his room, and engaged with the world around us. Pictured with Mattie is Anna, physical therapist extraordinaire. I will never forget Anna and her amazing skills, compassion, and support. I always knew she would be honest about Mattie's situation, and I believe Mattie forced her to think outside the box as a therapist. Anna rose to the occasion every time. 

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

• Number of people diagnosed with the virus: 78,730,893
• Number of people who died from the virus: 941,866

I got up early today because my dad's speech therapist was supposed to visit at 10am. Which means that I have to get myself ready, breakfast ready, and then get my dad up. I literally have to get breakfast done before I wake him up, because after he comes downstairs he wants breakfast instantaneously. He is solely focused on that and I have found making breakfast while he waits for it is NOT a good plan. 

Any case, his therapist was 40 minutes late! Mind you I asked her to come at 11am and she said she couldn't! That she had to come at 10. So instead she showed up at 10:40. We like this therapist, but since we learned she is pregnant, today was her last visit with us, which I am not happy about. Especially since she is the ONLY speech therapist this agency has! My dad has requalified for more speech therapy services, but I have no idea who will be providing them. 

After the therapist left (and mind you during this, my dad had to run to the bathroom twice), I folded laundry and then went to walk Sunny! It was a beautiful day and I find walking is my only outlet. Ironically I purchased a pedometer for my dad the other day. It won't work for him because he is TOO inactive, so now I am using it. 

When Mattie died, our friend gave me and Peter pedometers. He wanted us to get out in nature, walk, and find a way to re-engage with the world. Honestly walking was the only thing we could do and for years I wore this pedometer until it broke. For me it is somewhat symbolic that I am wearing a pedometer once again. Sure I could use my iPhone, but I really don't like tracking my steps that way. The whole notion of a pedometer reminds me of Mattie, my time dealing with intense grief and relearning my way back into the world. Though my current caregiving role is different, it still requires a whole new mindset change and it is debilitating. 

This afternoon, my parents and I drove to Union Station and picked up my lifetime friend, Karen. I wasn't sure how this visit would go because of the dysfunction I balance. But Karen is like family to us and I don't have to worry about how she will interpret things. In any case, Peter snapped a photo of us tonight!

Tuesday, February 22, 2022

Tuesday, February 22, 2022 -- Mattie died 647 weeks ago today. 

Tonight's picture was taken in February of 2009. Mattie was in his hospital room and creating. Mattie learned how to use a glue gun early in his life. In preschool for a matter of fact. I was actually nervous for him to use this device, but he understood how it worked and never burned himself. Look closely at this photo, do you see something on Mattie's foot? It was a plastic roach! Mattie may have been ill and not feeling great, but he never lost his sense of humor, and he knew a plastic roach would get a rise out of me. 

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

• Number of people diagnosed with the virus: 78,634,064
• Number of people who died from the virus: 938,862

Today was not a good day. After 7 days, I removed the heart monitor from my dad's chest. Getting this sticky thing off was a feat, and thankfully the monitor company gave us adhesive remover. But it took me 15 minutes of work. Then at some point today I had to pack it up and mail it back to the company. I needed that like a hole in the head. 

I remained home working on one task after the other. My dad's social worker came at around 1pm and she did not leave until 3pm. I am not sure if I find the talking helpful or what. She listens to my mom and checks in with me about how things are going. But honestly there are times things are not going well, and I don't feel like these periodic check ins are helpful. On the contrary they take up my valuable time. 

My mom explained to the social worker that she basically hates her life and wants to be able to do things. However, when I reminder her that she is here, I am dealing with all of my dad's issues, and therefore she could go to an exercise class, a museum, or you name it. She says she doesn't want to do this because she would feel guilty that she is going out. Any case, the entire dialogue (which I am not reporting here), set me off and I stormed out of the house with the dog and walked for two miles. I needed to reset and stabilize. 

Then I learned that my dad's speech therapist is coming early tomorrow morning and his physical therapist is coming early on Thursday! These folks have NO idea how this impacts me, as I have to factor in getting up much earlier in order to get my dad ready in time. Despite me sharing my displeasure, I have no choice, as they are juggling things to fit us into their schedule. JUST not happy!

Also something to note..... my dad apparently got up at 4:15am to weigh himself and brush his teeth. Naturally this concerns me big time, and I am not sure why two nights in a row he has gotten up to use the bathroom, rather than use the urinal by the side of his bed. He has been using the urinal since 2020, so any change in pattern is a red flag to me. 

Made chocolate chip cookies today and......

Chocolate chip banana muffins!

Monday, February 21, 2022

Monday, February 21, 2022

Tonight's picture was taken in March of 2009. That day we came back to the hospital to attend the launching of the children's art gallery. The gallery is located on the ground floor of the hospital, and in order to get to elevators of the comprehensive cancer center, you have to pass this gallery. Mattie and I both provided art work for the unveiling reception. Mattie's contribution was a Lego model of an ideal hospital room (from his perspective) as well as both a poem (featured on the left in a black frame) and a story about his Lego hospital (featured on the right in a black frame). Mattie was proud to be a part of this gallery and to take part in the opening ceremony. 

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

• Number of people diagnosed with the virus: 78,514,209
• Number of people who died from the virus: 935,816

I got up at 6am today, in order to get my morning tasks done..... including getting my dad up, showered, dressed, and downstairs for breakfast so that I could leave the house at 8:30am. I had an appointment at Mattie's hospital for an x-ray and follow up appointment with my kidney stone doctor. 

Given that I had surgery in 2019 for kidney stones, my hope is never to experience this crisis or pain again. So I take my follow up care seriously. Therefore, there was NO way I was going to miss this appointment. Any time I am at Mattie's hospital, I walk through the Children's Art Gallery, to check out the art and of course to see if Mattie's Lego story is up! Mattie's story is still there and the blue collage next to Mattie's story was something I created for the gallery's opening in 2009! It was a pictorial depiction of what makes the ideal children's hospital! Naturally from my perspective that means you MUST have child life and art therapy! It means a lot to me that the director of art therapy keeps our creations up and side by side. Seems very symbolic to me!

Mattie's hospital is under construction. They are building a new surgery center and the whole place is congested and not user friendly. Parking is worse than ever. In fact, it is almost impossible to self park, and as I negotiated my way to the parking lot, it brought back memories, COUNTLESS ones of driving Mattie to the hospital and trying to find a place to park. I can recall walking up and down ramps of the garage with Mattie in tow in a wheelchair. My hope is that the new surgery center accounts for parking and addresses this major problem at the hospital. 

Due to construction, all the entrances and DOORS into the hospital are blocked. In some cases doors have been walled over. I swear it looks like a prison inside. Fortunately I know my way around the hospital, because if I were new to this facility now, I would be lost with no way to get outside! I showed up at the radiology department around 9am. In its usual dysfunction, I tried to check in. The woman behind the counter gave me a number and told me she would call me to assist my check in process. So I held the number and sat for 15 minutes. After which, I flagged someone else down and told him I needed help because I wasn't happy with this number system. At that point, I was escorted to a window to register for the KUB x-ray. Who knows what would have happened if I did not assert myself! 

The x-ray went smoothly, and fortunately I am mobile and flexible. After doing assessments with my dad, I realize how important it is to be able to move. My dad has many physical limitations and trying to put him flat on a table for any sort of radiology testing is close to impossible. After my x-ray, I waited in the hospital for about 90 minutes until my doctor's appointment. Initially I was going to leave the hospital and walk around to get hot tea. Given how locked down the hospital is due to construction and COVID, I stayed put. The doctor's office was running behind as well. I am NOT in love with his staff, and listening to their meaningless banter about hamburgers practically sent me over the edge. But I did get in, saw the doctor, and found that I haven't produced anymore kidney stones in a year. Excellent! One blessing for the week. 

If someone would have told me that going to a hospital for an x-ray and a doctor's appointment would be viewed as freedom and respite, I wouldn't have believed it. But this is what this adventure was for me today. 

Sunday, February 20, 2022

Sunday, February 20, 2022

Tonight's picture was taken in February of 2009. Mattie was home between hospital treatments and wanted to set up his tents and tunnels! So naturally we did and we created a way for these things to connect together. Mattie loved it. Despite his physical disability, he still had no problem scooting around on his backside!

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

• Number of people diagnosed with the virus: 78,468,292
• Number of people who died from the virus: 935,174

Peter is on his way back from Boston today. He sent me this photo of this hand made Italian tablecloth. A piece his mom wants to give to me. I naturally accepted the gift, because I think it is a work of art, but I also wanted it because I remember this tablecloth on his mom's table during family Easter celebrations. The photo doesn't do it justice, as it is a lovely spring pink. 

I have to say that it isn't easy to see our parents (mine or Peter's) start giving things away. It is not like when I give things away, instead, their items are being dispersed because they understand with age that there is no purpose on holding onto things. Instead, they would prefer someone take the items, appreciate them, and put them to good use. 

All I know is I have been seeing lots of things being donated since June of 2021, when we were digging out of our townhouse and trying to pack it up. Then I repeated the process in November/December 2021 with my parent's move from Los Angeles. Nonetheless, I find going through items and giving them away disconcerting. For me it is even worse, because I have no children to leave our items to and therefore, at times I wonder WHY HAVE ANYTHING!? 

Back to my everyday reality. My dad's speech therapist has my dad doing daily logs to keep track of his entire day (morning, afternoon, evening, appointments, phone calls, therapy sessions and to do's). It is actually a very helpful exercise, and it further confirms how significant my dad's memory loss is! On an aside, I really had no idea that speech therapists work on cognition and memory loss, but they do! This morning, just like every morning, after breakfast, I had my dad pull out his log to complete it for the end of the day yesterday before starting the current day. When you ask my dad what he did yesterday he has NO idea. Frankly he has no idea what he did a minute ago. So he needs a lot of support and coaching through the log. 

We have been watching the TV series, Heartland. It has 14 seasons and counting. We are in season 14, and my parents have watched the show from its beginning. Therefore, you would think the characters would be familiar to my dad. This morning I asked him about the Heartland episode we saw last night. He had no idea! I mean NONE! I then asked him about certain characters and he did not know who I meant. So I went over three characters with him.... a mother (Lou), daughter (Georgie), and the daughter's boyfriend (Quinn). My dad couldn't understand that Lou was Georgie's mom. He understood that Georgie was Lou's daughter, but he couldn't go the other way. In fact, he couldn't keep the three people straight at all, so I pulled out a piece of paper and I started a family tree. That seemed to help. 

What gets me laughing is when I ask my dad what he did yesterday..... his first response will be.... I went walking. What is hysterical about this is he rarely walks unless prodded to move his body. This is not necessarily dementia related, this is historically who he is! But I find it fascinating that in his mind, he is constantly walking and exercising. When I laugh, he thinks I am laughing at his memory loss. I correct him that I am in NO WAY laughing at that, but I just find it funny that he perceives himself doing all this walking. His therapists want him walking once an hour! Ridiculous for a person like him, but I just bought him a pedometer today and I think it will help him see his level of activity or LACK THERE OF, by seeing his daily step counts. 

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.