Monday, August 17, 2020

Monday, August 17, 2020

Tonight's picture was taken in August of 2008. Mattie's art therapists knew he loved Scooby Doo. So they stenciled a scene from the TV show on a ceiling tile. For weeks, Mattie, Peter, and me painted in this tile. After Mattie died, the hospital gave me most of Mattie's tiles. He did 6 of them over the course of his treatment. However, two were missing.... this one and his giant roach!

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

• number of people diagnosed with the virus: 5,435,908
• number of people who died from the virus: 170,453

This morning my dad's physical therapist came over. We introduced a new exercise to my dad. Walking on the street where he lives. It was about an 18 minute walk. Me and the caregiver trailed after my parents in a transport wheelchair. My dad's PT asked me to purchase such a chair about a month ago. So I did! The chair made a huge difference because it enables us to cover more ground.

Please pay attention to this driveway. Perhaps you can get a better idea for how LONG it is! It is over 500 feet from the front door to the gate on the street. 

My parent's house is on a flag lot. We share a driveway with the house in front of us. In order to get to my parent's house, you have to walk down Allison's driveway and then down the driveway in the above photo! Which translates to quite a walk!! When I have packages and boxes by the gate, it is a fun chore. I did buy a red wagon, because it helps schlep items from the gate to my parent's front door. 

My dad was focused only on the street. He walks with his head face down. So in essence he isn't paying attention to anything or anyone around him. However, several people that were out walking were cheering my dad on and giving him a thumb's up! 

I have noticed when watching a TV show with my dad, he has no memory for the characters in the show and can't understand one scene to the next. I wasn't quite getting why this was happening, as I did not know if he was distracted, tired, or what! In fact, when we watch TV together, I pause the show every 5-10 minutes to process what we saw, so he can follow along with us. 

Today, I went through a few memory exercises my dad's occupational therapist sent to me. In fact my dad's OT has been very kind to share many workbooks with me electronically. As some of these books are $90 or more. In any case, this is a sample exercise. So let's say, I tell my dad to remember three words... bush, tree, grass. Many of us without cognitive challenges, are coding these words as a visual, or perhaps you are seeing the connection among these words in your head. These codes help us remember. What I quickly could see is that my dad is unable to code words! He can't visualize these words or he objects these words stand for. So he sees NO connection between tree and grass per se. In addition, if you ask him to recall these words a minute later, he can't! He has no recollection. This was very very revealing to me, and helps me have a better understanding for the complexities I am seeing as we watch TV together. 

Another exercise was to look at the box of objects on the left, one at a time. Then  cover the box on the left and ask my dad to draw what he recalled in the right hand column. He was able to do it, but it was challenging and he had to do it about twice or three times until he remembered all three objects in each example. 

Today was Sunny's last morning walk in the woods behind Peter's parents home!

Apparently Miss Indie is thrilled to be home. Sunny, however, maybe a bit dejected. In Boston he had access to a backyard filled with squirrels, bunnies, and chipmunks. He got to visit a farm, play with other dogs, and get lots of attention. Summer camp I tell you!

After an 8 hour drive home, Peter walked into our home to find a flood. All our wooden floors popped up and it was a total mess. Honestly I would have lost it! As I am tired and on overload most days. 

I am sorry that Peter is dealing with this alone! See how awful this looks!!!

Sunday, August 16, 2020

Sunday, August 16, 2020

Tonight's picture was taken in August of 2008. We were home between treatments and it was a tough day! I can remember that distinctly. One of Mattie's friends dropped off a gift for us. It was a HUGE bubble maker. Peter got it out and we all went outside to try it and make bubbles. You can see Mattie was engaged and was pointing at the bubbles. Thank goodness for the daily gifts Team Mattie gave us. Some days, those gifts were the only things that brought a smile to Mattie's face. 

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

• number of people diagnosed with the virus: 5,401,803
• number of people who died from the virus: 170,019

On Friday, August 14th, my parent's celebrated their 60th wedding anniversary. Given all that we are balancing, I forgot to post these wonderful photos on the blog. But given that the blog is my institutional memory, I did not want to miss this opportunity to highlight this occasion. 

Though we go out to lunch every day (in order to inspire my dad to eat), I planned a special gathering on Friday at one of the restaurants my parents enjoy. The restaurant has a HUGE tent and we had a lot of space from other diners. It was wonderful but VERY VERY hot outside. None the less, it was a special evening with beautiful flowers, pink champagne, good company, and tasty treats. 

The flowers were glorious and made our table look very festive! Typically my dad doesn't drink, but even he had a glass of pink champagne to commemorate the occasion. 

Me with my parents. 

Pictured with my parents are Gary and Marie. My dad met Gary when he was working at Warner Bros. Gary is the head electrician at the studio and a wonderful person. Marie, his wife, deeply cares for my parents and is a born caregiver. As she has a child with a significant disability who she has cared for, for over twenty years. Gary and Marie are also big Foundation supporters. Which I deeply appreciate. I am so glad they could attend this dinner in my parent's honor. 

Gary and Marie gave my parents two mugs and two dozen home baked cookies. The mugs say....

Mr. Right and

Mrs. Always Right!

My dad has been dealing with uncontrollable irritable bowel syndrome (IBS). IBS did not take a break at their anniversary dinner. He landed up not making it to the bathroom in time, so literally I went into the men's room with him at the restaurant to help clean up. I travel with a complete tote bag filled with all sorts of supplies. So we were all set. 

After a week of dealing with uncontrollable diarrhea, I had enough. I wanted a solution. As it is impossible for him or my mom to have any quality of life, as my dad has to be tied to the bathroom. I have STOPPED him on all the meds his GI doctor recommended and have also cut dairy from his diet since yesterday. It is my hope that experimenting with his diet, we can get a better and more natural control over his IBS. As he has a handful of other health issues, and I don't want IBS to add to the issues. 

After breakfast this morning, my mom and I went out for a three mile walk. My dad was with one of his caregivers and was busy doing his PT and OT exercises. 

Along our very HOT walk, we came across an orange kitty! 

It was the day of seeing ORANGE. A neighbor has a wonderful vine. I have passed this vine in June and July. But today to my surprise was a big pumpkin on the vine. Mattie would have absolutely loved this sighting, as he loved to go pumpkin picking. 

Outside my parent's kitchen window was this squirrel. I took one look at him and laughed. I laughed because I totally appreciated what he was doing. He was trying to get some sort of coolness off the metal, as it truly felt like an oven outside. 

Saturday, August 15, 2020

Saturday, August 15, 2020

Tonight's picture was taken in August of 2008. Next to Mattie was Anna. Anna was the chief of pediatric physical therapy. We were very fortunate to get someone so capable, bright, and compassionate. During Mattie's first week in the hospital, she got him acclimated to a wheelchair. Given that Mattie was going to have several surgeries as part of his treatment protocol, Anna wanted to normalize the chair for Mattie and also work on his upper body strength. Anna played a significant role in Mattie's cancer journey right from day one. Ironically I thought Mattie would be spending a month or two in a wheelchair post surgery. Unfortunately after his surgery in November of 2008, Mattie was wheelchair bound.  

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

• number of people diagnosed with the virus: 5,356,244
• number of people who died from the virus: 169,423

Another busy day here! I begin each day at 6:15am. My dad's caregivers arrive at 8am, and basically it is non-stop activity until 1pm. Today, my dad's occupational therapy came for an appointment. However, in between appointments, we received a large mail delivery. Big boxes were left near my parents gate. Which is over 500 feet from where you see them now (as this is near their front door). I had to carry the boxes back to their front door and then open every box and put items away. After which, each of the these boxes needed to be broken down in order to fit in the recycling bin. I have ABSOLUTELY no idea how my parents manage any box deliveries when I am not here. As the walk and carry are extensive. Also today was 100 degrees, so this made moving around boxes debilitating. 

I would say the day to day existence here is difficult at best. Though my dad is more stable than he was in June, he is still fragile and agitates easily. He also has irritable bowel syndrome and it is very difficult leaving the house for any period of time because the need to have a bowel movement can come suddenly. Most times this week, he did not make it to the bathroom in time and therefore needs to be seriously cleaned up. All of this makes him anxious and of course the whole thing is overwhelming for my mom to manage. I frankly do not know how they both make it day to day when I am not around, because as it is, I am working around the clock. So I know the current state of affairs is not manageable long-term. Which of course weighs on my mind as we do not live around the corner from each other. 

Meanwhile, Miss Indie is in Boston and making herself at home at Peter's parents house. 

Out on the deck, Sunny is resting after a full day of being on squirrel and bunny patrol! 

Friday, August 14, 2020

Friday, August 14, 2020

Tonight's picture was taken in August of 2008, during Mattie's first week in the hospital. As you can see, Mattie received many stuffed animals from friends. The room was filled. Mattie was very excited because he received a visit from Scooby Doo! Mattie was a huge Scooby Doo fan. Note the two Scooby Doos on the bed! Years after Mattie died, I happened to meet the father of the young boy playing Scooby Doo in this photo! He mentioned that his son was touched by meeting Mattie. So the affection went both ways that day. 

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

• number of people diagnosed with the virus: 5,292,711
• number of people who died from the virus: 168,154

My dad's caregiver had to take her son to school this morning to pick up textbooks. So like on Monday, Tuesday, and Wednesday of this week, I got my dad up, showered, dressed, and prepared breakfast for my parents. 

As is typical in "paradise," we had a full day. I managed the washing machine repair person, the plumber, went grocery shopping, made lunch, helped my parents with pension issues, and later today will be taking them out for an early dinner to celebrate their 60th wedding anniversary!

Check out Tica. She is a Pomeranian, who belongs to the plumber. He travels around with her!

The plumber literally put Tica on top of the fountain and left her there while he was in the house fixing the shower. Tica is like Sunny. Very well behaved, calm, and LOVES attention. Of which I gave her plenty! Not to mention a bowl of water. 

Peter and I sent my parents flowers. Though a flower delivery should be easy! It isn't at this house. The house sits on a flag lot and therefore shares a common driveway behind a gate. The driveway is a good 500 feet to the front door. But here is the kicker. In front the driveway is a gate to enter the property. Outside the gate there is NO doorbell and no way to communicate with the person in front of the gate. Making it impossible for the homeowner to know if someone needs to communicate with you and enter the property. 

Don't get me started on this. Any case, getting in is hard, but so is exiting the property. I can't see when someone is approaching the gate to open it. Therefore, if I press the button too soon, the person can be trapped on the driveway unable to get out. Which is exactly what happened to the flower person today. Poor guy was walking back and forth multiple times until he finally got out. I have tried to discuss this gate issue with the property owner, but he keeps telling me that his system is state of the art. Of course anyone who has to interface with this gate for a half a minute, knows it is a STATE but NOT state of the art. 

Meanwhile my boy, Sunny, is having a ball in Boston. Today Peter visited with his parents friends who have two dogs. Sunny got along splendidly with one of them and was out in the backyard looking for rabbits! Sunny is in heaven. 

Thursday, August 13, 2020

Thursday, August 13, 2020

Tonight's picture was taken during August 2008. It was Mattie's first week in the hospital. At that point, we weren't sure what to dress Mattie in. He did not want to wear clothes. So the hospital gave him this outfit. Subsequent photos, Mattie was always in PJs. We bought several sets, because this was his clothing of choice! That particular day in the hospital, Mattie and I created this Mardi Gras mask out of model magic. Back then there was no child life playroom, so we literally did arts and crafts in the middle of the hallway. Where there was a will, there was a way. I still have this mask in our kitchen today. 

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

• number of people diagnosed with the virus: 5,244,238
• number of people who died from the virus: 167,029

It was another busy day in paradise! My dad had a visit from the wound care specialist at 9:30am. His back sore is healing, but will take several more months. In fact, because he has a wound, Medicare requires weekly nurse visits and wound care specialist, until it is healed. My hope is that the sore is healed by December. Mind you we have been dealing with it since MAY!!!

After the wound care specialist, then Jon arrived. My dad's physical therapist. My dad was put through his paces today. Jon has him doing an obstacle course on the patio. Which involves walking on grass, and walking around the potted plants. Walking on different type services proves to be very challenging. 

My dad is making progress from where he was in June, but cognitively he isn't what he once was. In addition, he still has trouble doing activities of daily living like dressing and toileting himself. 

As of next week, my dad will have had 15 physical therapy sessions with Jon. That is only because we made a fuss and demanded Medicare cover more sessions. Otherwise, he would have only been granted 7 sessions. Which is better than no sessions, but it just isn't enough to help someone try to regain their independence. 

After Jon left, we were visited by Yana. My dad's nurse. I have noticed that my dad's blood pressure is high particularly in the morning. I suggested to his doctor on Monday that we change the time of day we administer his blood pressure meds. The doctor was having my dad take them at night. However, I changed them now to the morning, and thankfully this has helped stabilize my dad's blood pressure. 

Peter and his parents drove to Connecticut today to visit Peter's uncle and aunt, Dave and Cheryl. They live on what I constitute as a farm. 

This horse's name is Hawk and he is 1,300 pounds! Mattie once rode one of Dave's horses years ago and loved it. Mattie would have loved this trip today! I know Sunny did! 

How do you like this cutie?

Every farm needs some chickens! My understanding is that Uncle Dave has several dogs. However, Sunny got along splendidly with a 16 month old German Shepherd named Lela! You know if I were there, I would have been snapping LOTS of photos of Sunny in action. 

Wednesday, August 12, 2020

Wednesday, August 12, 2020

Tonight's picture was taken in August of 2008. Mattie was in his first month of treatment and this photo showed Mattie being escorted to a scan. Mattie could not do scans without sedation. Peter and I learned that the hard way! Each scan Mattie did without sedation landed up being a traumatic experience. For example, Mattie was very scared of MRIs and CT scans. The noise of the machines bothered him intensely and Mattie's MRIs weren't short, they lasted 90 minutes or longer! Mattie was so traumatized by doing scans without sedation, that he would hide under the scan table, wouldn't come out, cried hysterically, and the scan couldn't be completed. Despite my best attempts at explaining this to Mattie's doctor, he refused to understand the emotions and extent of the issues. That was until Linda (child life professional) and Debbi (sedation nurse) came onto the scene and observed Mattie's reaction for themselves! After which, Mattie NEVER had a scan or procedure without sedation again.  

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

• number of people diagnosed with the virus: 5,187,611
• number of people who died from the virus: 165,831

It was another early morning. I was up by 5:45am. It is vital to get up early in order for me to get showered, dressed, and breakfast made before I wake up my dad and get him ready. Though the caregiver was coming this morning, her schedule is 8am to noon. Given that we had to leave the house at 9am to make a 9:30am doctor appointment, I had to get the shower routine started at 7:30am. 

We had breakfast together, and then all of us (including the caregiver) went to the doctor's office. Only one of us was allowed in the exam room because of COVID, so I stayed with my dad and my mom and the caregiver waited in the hallway. 

I learned today that my dad has a larger sized kidney stone in his left kidney. Which will need to be monitored. When I return in December, I will take my dad for a follow up xray and appointment. I liked the urologist a lot and given the questions I had for him, he asked me where I practice! Hysterical!

The doctor performed an ultrasound in the office. The ultrasound can detect cysts, tumors, abscesses, obstructions, fluid collection, and infection within or around the kidneys. Stones of the kidneys and ureters may be detected by ultrasound.

See the bright dot in the center? That is a kidney stone. Fortunately my dad has no other masses, no blockages, or inflammation. 

The x-ray my dad took on Monday confirmed that the ureter stent came out on its own. When a kidney stone gets lodged in the ureter, surgery is needed (which my dad had in May). However, a tube like stent is inserted from the kidney to the bladder during the surgery, to keep the ureter open so it will not collapse on itself post-surgery. The stent usually stays in 3-7 days. Most of us need to go back to the urologist to get the stent removed. In my dad's case, he urinated it out! The doctor did not believe me, but after seeing the x-ray, he said I was right.

So far it has been a busy week.... Monday we saw my dad's primary care doctor, Tuesday, my parents had a dental appointment, and today we saw the urologist. It is a real challenge to get to appointments on time, but we did it. 

Everyday people are coming and going into my parent's house. Caregivers, a nurse, physical and occupational therapists, and a wound care specialist. We have no real control over this, it is what my dad needs. The urologist asked me today if I was afraid to fly across the country?! My answer is WHAT CHOICE DO I HAVE? Life is filled with risk, and I have learned I have to assess the risk and make the best decisions possible. 

Tuesday, August 11, 2020

Tuesday, August 11, 2020 -- Mattie died 567 weeks ago today. 

Tonight's picture was taken on August 6, 2008. Mattie's good friend, Charlotte, came to the hospital to visit Mattie. This was Charlotte's first visit to the hospital. Visiting a hospital, especially a pediatric unit, is never easy. But despite all the sounds, smells, and sights, Charlotte never missed an opportunity to visit her friend. That day they had a painting party together right outside Mattie hospital room, in the middle of the hallway. I learned a lot from Mattie's child life professional and Mattie! After all, being in the hospital did not mean that Mattie was no longer a child. He was and he needed those creative outlets to be himself. I am so glad we never missed an opportunity to give him those moments and I am grateful he had the companionship of Charlotte.

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

• number of people diagnosed with the virus: 5,130,784
• number of people who died from the virus: 164,603

My morning started at 5:30am. I wanted to get up, showered, and dressed before starting breakfast. At 7am, I woke my dad up and got him showered, dressed and downstairs for breakfast. All of this may sound easy, but every aspect of getting my dad ready to leave home by 8:30am, takes great coordination. 

Yesterday, I learned that my parents had a dental hygiene appointment in September. I was concerned about my mom managing the logistics of this alone, so I contacted the dental office to see if I could get them an appointment during the month of August while I am here. I gave the dental office some insight into my parent's situation and why I would appreciate their cooperation in making this happen. I was fortunate that they were able to squeeze my parents in this morning. 

My parent's dentist is very compassionate and he donates 800 toothbrushes a year to Mattie Miracle. It was wonderful to be able to meet his dentist in person today to thank him personally. We were at the dentist office for two hours, as both of my parent's had a teeth cleaning. Nonetheless, the whole process went smoothly. 

Now I am waiting for a dryer repair person to show up! I am trying to accomplish a task each day as days here are full, and it takes a lot of oversight and management to get chores and issues resolved. It would be IMPOSSIBLE for my mom to do these things and also support my dad. 

Today's Sunny photo! Sunny is in essence at summer camp. He is enjoying his days in Boston! He spends a lot of time outside in the backyard checking out anything that moves.... like squirrels and chipmunks. 

Sunny and OC the cat met officially today! OC ('Outdoor Cat') is Peter's parents cat. He is an old fellow, and has significant health issues. Therefore, it is hard to know how he'd react to Sunny. Clearly OC accepted Sunny. In fact, I have yet to meet an animal or HUMAN who did not like Sunny.

Monday, August 10, 2020

D

Monday, August 10, 2020

Tonight's picture was taken on August 6, 2008. Next to Mattie was Linda, his child life specialist. They were in the middle of the hallway, outside Mattie's hospital room. What were they doing? Linda understood that Mattie's "girlfriend," Charlotte, was coming to the hospital for the FIRST time to visit Mattie. Linda wanted that visit to go well and therefore set up a painting party in the hospital unit to normalize the setting for Charlotte, and also to give the children something to do together that had nothing to do with Mattie's illness. It was a brilliant plan. But of course Charlotte was a special friend, who never abandoned Mattie and visited him often throughout his cancer journey. 

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

• number of people diagnosed with the virus: 5,075,678
• number of people who died from the virus: 163,282

Today and Tuesday, no caregivers are coming. I thought that would make my day less stressful. As I did not have to oversee and manage them. But today was anything but easy.

It started with the smoke detector going off at 4am in one of my parent's bedrooms. It was so loud, it woke us up from a deep sleep. Where is the smoke detector? Try a closet! A stupid place for a detector. In any case, I got up on a chair and managed to get the battery out of the gadget. Typically that stops the sound. NO such luck. The smoke detectors are connected to some sort of electrical circuitry in the house. I wasn't about to play with wires at 4am, so I literally put a pillow over the detector and closed the door. I attempted to go back to sleep. 

I got up at 7am. Which is LATE. I got myself together quickly and then started addressing my dad's needs. Which means toileting, showering, and dressing. Then got him downstairs and wanted a haircut. So I squeezed that in, started the laundry and made breakfast. At 10am, my dad's physical therapist came for shortened session.

My dad went up and down 15 stairs SIX times this morning. That was a total work out for him. 

My dad goes up much easier than coming down! The banister is different coming down. It is lower and causes him to tip forward while coming down. My dad's left arm isn't strong (as he broke it years ago), so holding onto the left banister isn't possible. 

After going up and down the stairs, my dad then did 50 sit and stands. Which truly wears him out. 

After physical therapy, I got my parents into the car and drove to his 10:45am doctor's appointment. When we got to the office, they said we did not have an appointment. I thought I was going to blow! But the doctor did make time to see us. 

Since my dad passed a kidney stone on August 7th, he needed to provide a urine sample and have a KUB (kidney, ureter, bladder) x-ray. My luck, and I am being facetious, my dad wasn't able to give a urine sample in the office and the x-ray tech at the office was off today. So instead, I was given a urine specimen cup to capture urine later in the day and bring it back. Also had to go to a testing center to get the x-ray done. A lot of running around today. 

While out, the dentist office contacted my mom about a September date for dental cleanings. I suggested she get appointments for August, so I could assist her. She did not want to do it, so I contacted the office myself. Bright and early we have appointments tomorrow morning. I just know it is a lot easier for me to move this caravan than my mom doing it alone or with a caregiver in tow. 

Now dealing with folding laundry and been on the phone for an hour ON HOLD with USPS. They want to deliver a package to my parents that requires a payment of $200. I don't think so! Not sure how the US Post Office functions, when they ask clients to wait on hold for an hour in order to talk to a live human being. Just awful! 

Meanwhile, Peter sent me this adorable photo of Miss Indie playing in Boston. 

Sunday, August 9, 2020

Sunday, August 9, 2020

Tonight's picture was taken in August of 2008. Hard to believe that Mattie was diagnosed with cancer at that point. That weekend, Mattie and Peter met up with our neighbor and they walked JJ, the Jack Russell Terrier. Mattie loved JJ and these two practically grew up together. When Mattie died, JJ was besides himself. He wouldn't eat for weeks and every afternoon, he came down to our front door and sat on our outside mat. Hoping to find and see Mattie. I learned from JJ and our cat, Patches, that animals do indeed grieve. 

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

• number of people diagnosed with the virus: 5,041,473
• number of people who died from the virus: 162,913

While my dad's caregiver was here this morning, I told my mom that we had to get out, get fresh air and walk. Because of my dad's situation, it is impossible to leave him alone. Which means it is difficult to get chores done and forget about having a minute to catch your breath.

Outside my parent's living room window is this fountain. The birds LOVE the fountain, and use it as a bird bath. We get all sorts of birds on the fountain, including hummingbirds. 

On our walk, we passed this house. I absolutely love its gardens. 

It was wonderful to see all this greenery and appreciate the roses. It was a good mental health break. As I am all aches of pains and even advil isn't helping.

Check out this tree! It literally has a branch that is sitting on top of the brick wall! It looks more like an octopus!

While walking we passed two women. One was telling the other that Frank Sinatra once lived in this house. I never knew this! In fact, Mary Astor and her husband built the house in the 1930's, which Frank Sinatra owned in the late 1940's and Bobby Darin and Sandra Dee owned in the 1960's. 

https://tolucalake.com/2019/07/refuge-of-the-stars/?fbclid=IwAR1GL7Ja_pkbudZAhPQ-sg25xw5L8ELZkDKoVLiV8x3xN5MXBDi8sTeyjH8

How did you like this spiky plant? It is as big as I am. 

The beauty of a sunflower! 

Meanwhile, check out Sunny! Making himself right at home with Peter's home.