Saturday, August 6, 2022

Saturday, August 6, 2022

Tonight's picture was taken on August 9, 2009. This was four days after we learned that Mattie's cancer diagnosis was terminal. Mattie's child life specialist, Linda, arranged for this special gift. Mattie and his friend, Abbie, got to go into the Lego store in the mall after hours. When no other customers were there, to work with two Lego master builders. Yes this is actually a title, look it up. That night they asked Mattie if he wanted to pick a kit in the store to build together. He couldn't pick one! Why? Because that year we built everything they had on the shelf, either at home or in the hospital. So they then asked Mattie what he wanted to build from his imagination. His response.... a NYC taxi cab. Most likely because of his experience going to NYC for experimental treatment. To this day, the yellow taxi Mattie constructed is in my office!  

Quote of the day: What I found most helpful when taking care of Nanny was remembering that while she would yell at us or be hurt that we could not stay with her forever, it wasn’t her real self reacting. We try to remember that Alzheimer’s disease takes people’s lives away and the unfamiliar person we see is just as unfamiliar to them. Until we find a cure, our family will fight for Nanny because underneath the shell of memory-loss, the confusion, and the sadness, there is a person with a heart that will always remember. ~ Erin Bryant, a granddaughter of a woman in the middle-stages of Alzheimer’s disease when she was living in an Assisted Living Residence, 2006

It was another full morning. Literally I did one task after the other, after the other for a good four and half hours. After my dad wolfed down his breakfast, I moved on to do cognitive games with him. In the midst of trying to play a logic game with him, my mom came to the table and presented me with a credit card issue. I told her that I couldn't address it right there and then because I was in the middle of working with my dad. Well one thing led to another and in typical fashion she wanted it addressed at that moment and we got into an argument. I have to admit I am tired and balancing a ton, so if you pepper me continuously I am going to snap. As a reaction to my snapping, my mom told me to shut up. 

With that I told Peter that he had to come to the kitchen because I was going out. I literally jumped in the car and went to the farmer's market by myself. I am rarely by myself without someone in tow. I have gotten to know two of the farmer's at the market, so it was nice to chat with them and support their work. 

When I got home I cooled down enough to pick up where I left off and got all the issues resolved, market stuff put away and three loads of their laundry done. However, Peter also gets upset with me because he doesn't understand why I can't accept my parent's decline and therefore adjust my behavior to support them, rather than challenge them at times. Using a rational lens, I get and appreciate what Peter is saying, but from an emotional standpoint, it is hard when balancing all the intense caregiving. I would like to be given just a bit of slack as I feel like I am doing the best I can and the average person would have caved in a long time ago. 

But what Peter said, I did take to heart. Because when I am frazzled and snapping the whole cookie crumbles here. I am the glue of the equation and if I manage my mom's crises and demands better, then there will be less screaming, tension, and overall angst here. Or at least that is the hope. But it is tiring to be patient, calm, and deal with the same problems day in and out. 

A happy Sunny! On the floor in front of him is a smoked pig's ear from the Farmer's market. Sunny LOVES them. Given that I want to inspire Sunny to eat, I am giving him all sorts of treats and this one must be highly valued. Sunny lands up carrying these pig ears from room to room for about a week before eating them. Not sure of the dog psychology here, but it is fascinating to watch him. 

Friday, August 5, 2022

Friday, August 5, 2022

Tonight's picture was taken on August 5, 2009. This is a day I will never forget, because on this day we learned that Mattie's cancer metastasized 6 weeks off of chemotherapy, making his diagnosis terminal. This was news that we never wanted to hear. There was no more treatment possible and instead of fighting, we had to switch gears and discuss end of life care and helping Mattie die with some sort of dignity. Which DID NOT HAPPEN. 

On this particular day, I fought to get Mattie an ultrasound and CT because his symptoms concerned me. In fact they concerned me for months, but doctors did not listen to me! Instead they kept telling me that Mattie's symptoms were psychological or he was manipulating me. In any case, between physical therapy and testing that day, Mattie and I went outside to the hospital rose garden to have lunch. Mattie posed by the art therapy elephant (a precious photo). Mattie was smart enough to know that something was going on and fed off of any reactions I had. We had a very tender time together in the rose garden and it will be a day etched forever in my mind. It is hard to believe that Mattie was able to smile through any of this, but it was the beauty of Mattie which I will never forget. 

Quote of the day: The past beats inside me like a second heart. ~ John Banville

Below is an excerpt from the August 5, 2009 blog. When I go back and read what I wrote back then I honestly do not know how I was able to do this! How do you write when you are working on pure adrenaline, very little sleep, and dealing with constant stress of having to make life and death decisions? I am not sure I have the answer, but it is a testament to the power of what the human body and mind can endure. Back then 1,000s of people read Mattie's blog and I felt compelled to share Mattie's story with our community. As I knew Mattie would need the social and emotional support, because remember my goal was to get Mattie better so he could return to school. A goal never met. 

On this 13th anniversary of this terminal diagnosis day, I share the words I wrote back then. After reading this, it is no wonder why this 14 month journey is forever etched in my mind and why not a day goes by in which my world hasn't been impacted by this forever loss.  

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Blog Posting From the August 5, 2009:

Mattie has been complaining of stomach pain since May. In May, we started running tests for an ulcer, but as many of you know, we did not get the test results back until last week. Part of me wishes we did an ultrasound and abdominal CT scan in May, but then again, that most likely wouldn't have changed the outcome of things. One thing is certain though, I know my son. I stuck to my convictions that something medically was wrong with Mattie and that this was the explanation for him not eating and drinking. This wasn't a psychological issue, and I knew this in my heart of hearts. Clearly today, medical science confirmed what a mother's love knew all along. I just wish medical doctors would listen to us more often! When I called the hospital this morning, they told me they couldn't fit Mattie in today for testing, so I booked an ultrasound for Friday. Then Ann called me and she asked me in a nice way, what I was doing about this scheduling issue? I am not sure if I gave up the will to fight or was just exhausted, since I would have challenged this testing delay in the past. But the more I thought about what Ann was saying, the more I realized I had to mobilize forces and advocate once again to get this testing done today.

I also want to acknowledge Linda (Mattie's child life specialist) today. She helped me every step of the way, getting the ultrasound and CT scans done, quickly and timely. After all I did not have appointments for either, we were add ons. But Linda can make anything happen at the hospital, and I can't say enough about how much she means to us.

Today, I fought every step of the way to make sure Mattie not only received an ultrasound, but a CT scan. Mattie's doctors did not feel he needed both, of course, until a large mass was spotted in the ultrasound. So in essence Mattie went through an ultrasound (smoothly thanks to Linda, and his DS player - something he never plays with, but it caught his attention today) first. I started getting very edgy during the ultrasound, because the tech asked Linda what type of cancer Mattie had. I thought that was a telling question to ask during the test and this prompted my immediate attention and concern. I couldn't shake that question all afternoon. After the ultrasound, Mattie and I sat outside the hospital in the rose garden and had lunch. Normally Mattie doesn't want to sit still, but today was different. He had me telling stories about his baby years. I retold the story of how he was born, how he learned to sleep, walk, and talk. None of these things came easy to Mattie, but he learned them, and through these struggles, Mattie and I became very close. When my mom describes Mattie as an extension of me, she isn't kidding! This is a fair assessment! The conversation in the garden today was so special, loving, and priceless moment between us, which I will never forget. Unfortunately this moment, was disturbed when the doctor called to tell me she saw a mass in Mattie's liver, and would need to do a CT scan.

Mattie seemed concerned that he had to take an unscheduled CT scan later this afternoon. He had to drink a contract dye, and then also had to have one injected through his central line. The prospect of the injected dye sent Mattie into a state of anxiety. He did not want to do the test, and it took a great deal of effort and calmness to talk him through the process. Peter left work today, so he was with me, and Linda also came to provide assistance. Linda is great at managing the techs, who clearly need managing. This tech had no empathy or understanding for what Mattie has and continues to go through. She was in fact annoyed that he wasn't complying with her instructions. Linda removed the tech from the room, and I basically had to give Mattie a pep talk so that he would tolerate the test. I told him I knew he was scared, that he did not want to go through the CT scan, but I had confidence he could do it. I told him there is nothing he can't do if he puts his mind to it. He eventually settled down and the test was completed.

When we got home, the doctor called us with the news. She actually did not want to tell me over the phone, but there was NO way I was going to wait until tomorrow. Needless to say, Peter and I are devastated. As you know, I follow the story of Sammie, a young teen with osteosarcoma in California. She too is dying from this hateful disease, and I always marvel how her family is managing and supporting Sammie. I always feared that Mattie was going to die because of the severity of his illness, but to some extent I lived with some hope. Today the hope within me is dead. I do not know how Peter and I will handle Mattie's disease progression and pain, nor do I know how you live without your child? It goes against the laws of nature to see your child suffer and die before you. Part of me is in shock and not in touch with my emotions yet. Which makes writing tonight very difficult.

Peter and I spent the evening sitting in silence and occasionally walking around. Caring for Mattie tonight was truly challenging, since our minds and hearts are racing. Mattie doesn't know about his disease progression. I haven't figured out how to proceed with that, so for now, I would appreciate this not be discussed around Mattie. After all, he gave the fight of his life this year, and now was supposed to be the recovery time. In fact, today, he told me he misses walking, and wants to walk again. This whole day is heart breaking, and I can't get over all we put Mattie through just to get to the point which we most feared. The words of Sloan Kettering come back to haunt me, as they always will. Sloan felt that Mattie's disease should NOT be aggressively treated since he was most likely going to die. Funny, how I thought that perhaps all our efforts could change the course of Mattie's future. What I have learned through all of this is we humans control very little. We only delude ourselves into this false complacency.

Thursday, August 4, 2022

Thursday, August 4, 2022

Tonight's picture was taken in July of 2005. We took Mattie to the Outer Banks for a week and along our journey we went to the Elizabethan Gardens with him. Peter's parents were with us and snapped this photo. I really don't have many photos of all three of us together! What I chuckle about however when looking at this was the stroller. I can't tell you how many different kinds of strollers we had for Mattie. Turned out that he really hated all of them. 

Quote of the day: There is a moral task of caregiving, and that involves just being there, being with that person and being committed. When there is nothing that can be done, we have to be able to say, ‘look, I’m with you in this experience. Right through to the end of it. ~ Dr. Arthur Kleinman

I was listening to the radio this morning and the broadcaster played a familiar theme song to me.... "like sands through the hour glass, so are the days of our lives." I stopped in my tracks and listened carefully. I have been a Days of Our Lives fan since I was probably old enough to watch TV and remember it. Let's say, five years of age. My grandmother would watch it while ironing each day, and since I stayed close to her as a child I became hooked on the lives of the Hortons, Bradys, DeMiras, etc! Even as a child I was intrigued by people and their stories, so most likely I was the perfect target to become addicted to soap operas. I never watched any other Soaps, I have been a loyal Days fan! When I lived in California as a teenager, I even ran into the cast at several restaurants. Needless to say back then, I was awe struck. 

Now as an adult, I turn to Day's of Our Lives for different reasons. When Mattie was alive.... healthy and battling cancer, I never tuned in. So I left my soap opera addiction behind for almost a decade. However, after Mattie died, I tuned right back in. In all honesty after Mattie died, getting out of bed was challenging enough and the only thing that kept me focused and not ready to jump out the window was Hallmark movies and Days of Our Lives. The beauty of Days is you can pick up right where you left off and catch up quickly. 

For decades these people have been a part of my daily life. So when I heard on the radio today that Days of Our Lives will NOT be aired on NBC starting in September, I LOST IT! I immediately text messaged Peter, who was on another floor. I told him Days will move from NBC to Peacock, and be streamed that way. Needless to say I wanted Peter to figure out how I can access Peacock. 

Why is any of this important? Well in the grand scheme of things, it isn't! However, I typically turn to Days of Our Lives during difficult parts of my life. Now being one of them. Each night, after my parent's go to sleep, I get ready for bed, and then sit there and watch Days. It is my time, in which I don't need to meet anyone else's demands and instead escape to the Town of Salem (a fictitious place where Days occurs). The beauty of a soap opera is there is no reality. miracles can happen, nothing is real, I don't hear about politics (for the most part) and other depressing aspects of our day to day existence. 

While I was running around doing chores this morning, this was what was going on with my parents. 

I entitle this photo... friends! The beauty of Sunny and Indie. 

Sunny Update..... he stills has a UTI. He has had it for months now. He has been on two different antibiotics, as he had two different infections. Now one infection has cleared up, but the other is still present. Sunny remains on antibiotics for another two weeks. The problem with all of this is while trying to heal the UTIs, he hasn't been on chemo. Needless to say this concerns Peter and me. 

Wednesday, August 3, 2022

Wednesday, August 3, 2022

Tonight's picture was taken in July of 2007. That week we took Mattie to Boston to visit Peter's parents. Mattie found their backyard intriguing because there was always wildlife to look at, chipmunks to follow, and lots of green space to run around in. All things he did not have a lot of while living in the city. It was in this backyard that Mattie fell in love with chipmunks. So much so that in kindergarten he wrote a story all about Chippy the chipmunk. 

Quote of the day: There are two types of people in this world, those who would take an Alzheimer’s patient on a joy ride and those who would say it was a waste of gas. Which one are you? ~ unknown

Tonight's quote is intriguing! Which one are you??? Putting aside a joy ride, you really could replace that term with anything. Such as would you take an Alzheimer's patient out to a restaurant, on vacation, or help with a log book? The instinctual answers is most likely YES. Or perhaps it is NO. There really is no right or wrong answer. It truly depends on the caregiver of the person with Alzheimer's disease and what the caregiver can manage and accept. 

I am very well aware of the fact that my dad remembers NOTHING from one minute to another. With that in mind, it would be easier to leave him in one place all day knowing full well that he wouldn't know or remember. If he can't remember then why do anything with him at all??? This is the complexity of caring for someone with Alzheimer's. Because if left in the care of the wrong person, a rapid decline in health would ensue. 

I guess I learned when caring for Mattie, that it is important to me to be happy with myself at the end of the day. Which means that I have to give my caregiving role my 100% and perhaps do things that most would deem silly or a waste of time. After all, I doubt my dad is getting one iota of benefit from his speech therapy daily logs. The only one frustrated with them is me. Yet why do I still do them? I do it because there is still a glimmer of hope that I have that something I do will be recorded in his brain or that it will trigger something. 

Now if I did not have my mom with us, would our life look different? Most likely yes. My dad is much more of a home body and happy to be planted. So though I would get my dad up and moving, we most likely wouldn't be leaving the house that often. My mom needs to get out everyday and do something. She and my dad are like polar opposites. So to accommodate her, I am going out and that usually means my dad is in tow. It adds to the complexity of my day to day routine. 

My mornings are simply ridiculous. After getting myself showered and dressed, and breakfast made, I then need to shower my dad and get him dressed and downstairs to eat breakfast. This morning my dad went off of his memory care center, but there was no break for me. Instead, I was busy prepping dinner, doing laundry, creating templates for my dad's daily logs, answering Foundation email, and the list goes on. I juggle a ton and I always feel like I am playing.... to beat the clock. Because at a certain time I know my mom will be ready to go out and that means I have to stop what I am doing. 

We have a beautiful butterfly bush that we planted in our front yard. Morning, noon, and evening, our butterfly friends come for a visit. Definitely a Mattie tribute!

Tuesday, August 2, 2022

Tuesday, August 2, 2022 -- Mattie died 670 weeks ago today. 

Tonight's picture was taken in July of 2008. That day we took Mattie for a walk on Roosevelt Island. He and Peter walked out on a fallen tree log and went into the woods together. Mattie loved the adventure and I snapped a photo! I was the family photographer and captured every moment, even the mundane. Turns out, nothing was ever mundane with Mattie and looking back I am happy I was obsessed with taking photos. Ironically this photo was taken only weeks before Mattie was diagnosed, before childhood cancer was part of our lexicon!

Quote of the day: We’re really a composite of our life experiences – memory layered upon memory and Alzheimer’s steals that away. ~ Meryl Comer     

Tonight's quote is quite poignant. I would say that Alzheimer's has stole most of my dad's memories. Not just his current ones, but those from the past. My dad has little to NO memory of things and experiences we had or shared together. It is a rather sad commentary. As he can't recall any of our vacations, being on a cruise, and forget even specifics about his work. In fact, he has dreams that he can't remember certain accounting principles (as my dad started his career as a CPA). The one consolation in this is my dad doesn't seem at all bothered by this, perhaps the reason for this is he feels the rest of us have his institutional knowledge so he doesn't need to work on it or worry about it. But the other fact is that my dad just isn't as caught up as I am with memories, recalling each day, and journaling about it. 

As you might suspect, I am ALL ABOUT memories and writing and reflecting on them are important to me. I try to picture myself in my dad's circumstances and if I were, I would be journaling and logging everything. I want to believe that this is a core value of mine, and regardless of what happens to me, I will turn to writing. Maybe? Observing him each day, does make me pause and it does trigger fears. As I have no idea who will be my Vicki?

I took my dad to speech therapy today. Mind you the one working hard in therapy is ME! Not only do I attend each session, but I am carrying out the therapy plan each day at home. The plan has been to develop a daily memory book, or as I call it.... a daily log. This book has been evolving over time.

I first started out with very targeted questions for each day. But that was confusing as the questions changed each day and my dad had trouble tracking them. So then I changed each daily entry to a standardized template. I learned today that even that is too complex and I have to simplify the questions I am asking him. I have to convert questions to  headings instead. So in other words MORE WORD FOR VICKI. 

If you click on the photo, you can see yesterday and today's entry. You will notice my dad's handwriting is very small (another sign of dementia) and it trails off. It is hard to know which questions his writing corresponds to at times. 

But each day, I quiz my dad on what's in the book. Not to memorize it, but instead I ask him questions and expect him to turn to his log to find the answers (eg,.... when did Mommy have PT? When was the last time we went out to a restaurant?). All answers are in the log! Ironically the speech therapist uses the entire 45 minute session to do exactly what I do each day. However, don't worry, it is not too repetitive. Since whatever work I do with my dad on this log really goes out the window a minute later. The goal is to try to get my dad used to turning to the book for answers, for him to want to record things to help him jog his memory, and for this to become a helpful tool in his everyday life. WE MAY NEVER GET THERE! I am a realist. 

Meanwhile the other day, Peter and I took Sunny out for a walk. Sunny was very focused on someone's front yard. Sure enough there was a reason!

A deer was grazing in the yard. 

I am not perfect and as I get more tired, my patience dwindles. Today, while driving from speech therapy to lunch, I lost it. My dad got a bug bite on his hand and he was in the front seat scratching it raw, my mom was reading a story in the back seat out loud (oblivious to my dad), and I was trying to concentrate on driving. I finally burst out screaming. I did pull it together but there are times it is too much. 

While at lunch, Peter sent me this photo! This photo was taken in June of 2019 on Kiawah Island, SC. We had bicycled the entire stretch of the beach, which was no easy feat when fighting wind. Peter wanted to remind me of my strength and determination. 

Monday, August 1, 2022

Monday, August 1, 2022

Tonight's picture was taken on July 31, 2008. Mattie was diagnosed with bone cancer days before. Seven days later we had to explain to Mattie that he had cancer and what the treatment was going to do. His art therapists were fantastic, right from the beginning. They designed a bug made out of clay. It represented a "bone bug." A visual which I thought Mattie would comprehend and appreciate, since he loved bugs. I explained to him that he had bone bugs inside of him (even though Mattie liked bugs, he did not want them inside of him!) and the chemotherapy was designed to kill these bugs. Once we explained this to Mattie we then asked him to demonstrate what he wanted to do with the bone bugs and if his foot was the treatment, what would it do? He got it right away..... Mattie stomped on the bug and flattened it out! 

Quote of the day: Alzheimer’s creates a kind of friction that the family needs to be strong for. You have to hold onto things and know what is true in life. ~ Candy Crowley

It is 6:30pm and this is the first time I have had a minute to myself all day. It won't last long as I have to cook dinner soon. After getting my dad up and ready today, I then had to take my mom to her first physical therapy session. An evaluation to be specific. The therapist was very nice but the session confirmed for me on paper that my mom is NOT in touch with her reality. She has no insight into her level of activity and frankly reports out as if she had her ability and energy from ten+ years ago. The therapist had her complete a survey called the ABC scale. I included it below. Clearly my perception of my mom's ability to balance and hers are not on the same page. 

The ABC Scale is a self reported measure of balance confidence in performing various activities without losing balance or experiencing a sense of unsteadiness. 
My mom completed these 16 questions and rate's herself by percentage.... 0-100%. 

Several of the questions had me laughing as my mom perceived herself as being able to walk up and down a ramp without assistance, to be able to stand on a chair, and to be able to be bumped by people passing by without losing balance. All of these are a BIG NO! Yet for many things she wrote that she has 100% confidence she can do this. This is actually scarier for me than the fact that she can't do these things. Because what she thinks and can do, DO NOT match up with one another. 

My mom has not come to accept yet that there is something wrong with her. Her symptoms are off the chart to me, and I manage her daily routine. We get into daily arguments over these issues, but at the end of the day, I am responsible for keeping her safe. Safe from herself and her poor decisions. I am glad she is willing to undergo further testing with the neurologist, because we need answers and if there is medication to help, I think we need to know this and have a plan moving forward. Right now I am on overload, caring for two parents, both with significant needs. This of course leaves little to no time for me on any level. 

Sunday, July 31, 2022

Sunday, July 31, 2022

Tonight's picture was taken on July 29, 2008. Six days after he was diagnosed. That day, Mattie had a bone biopsy and thankfully was totally knocked out for the procedure. Of course each sedation, had consequences. As you can see Mattie wanted this bandage off of his arm and the bandage adhesives became another problem to manage. Over time, I became an absolute expert at taking off bandages with the use of rubbing alcohol. 

Quote of the day: Alzheimer’s is a disease for which there is no effective treatment whatsoever. To be clear, there is no pharmaceutical agent, no magic pill that a doctor can prescribe that will have any significant effect on the progressive downhill course of this disease. ~ David Perlmutter

If life is not challenging enough, today I am dealing with my dad's Irritable Bowel Syndrome (IBS). Not the diarrhea version but the constipation one. My mom hates all the diarrhea, and I am not in love with it, but I will take it over my dad's constipation any day. Constipation with him is like a national crisis. Literally everything in our house stops in order to manage him. He moans, complains, and is solely focused on his bloating, cramping, and asking when is he going to go to the bathroom. The answer is I DON'T KNOW! 

Yes I track my dad's daily bowel movements. I have to, because he can't and in 2020, I took him to the emergency room in Los Angeles because he did not have a bowel movement for a week and he landed up with an impacted colon. In other words, he was hospitalized for a week!

My dad has had IBS for decades, but what is new now is the cycling in of constipation. Of course having moderate stage dementia doesn't help on any level. We regulate what he eats, so I think what is causing the problems are the snacks and lunches he eats at his memory care center. I have asked them to remove all dairy produces and grains. But nonetheless, he is still being affected. 

Truly all of this can make me insane and I realize Peter is on overload with this. We have NO life whatsoever. I am running a nursing home full time, I have lost myself, and my ability to have relationships with anyone at this point. It is grueling, exhausting, and with no end in sight. 

Today I was hopeful that after I got my dad ready, I would be able to take Sunny for a walk. But in usual fashion here, the next crisis developed and I am once again unable to walk Sunny. It is very discouraging. I have administered a laxative suppository for my dad but now three hours later, it has no effect. So we wait. We were going to go out for dinner, but clearly this isn't possible given the situation. 

I just sent Peter to the grocery store and will cook dinner. Another chore in the long line of chores. 

I snapped this photo at noon. I honestly don't understand why they insist on getting up so early, if after breakfast, they both sleep. Unfortunately once I am up, there is no sleeping for me, as I have tons to do and to get done.