Saturday, September 3, 2022

Saturday, September 3, 2022

Tonight's picture was taken in September of 2008. As you can see, Mattie was all business. He got an excavating gift, in other words, a block of clay in which he had to dig, and dig, to reveal plastic dinosaur bones that he then got to assemble together. I was always grateful for gifts like this, as Mattie had very good fine motor abilities, and cancer fortunately did not interfere with this talent. 

Quote of the day: I'm going to be gone one day, and I have to accept that tomorrow isn't promised. Am I OK with how I’m living today? It's the only thing I can help. If I didn't have another one, what have I done with all my todays? Am I doing a good job? ~ Hayley Williams

It was another busy day on the farm. In addition to my usual tasks, I wanted to put together a flower arrangement and certificate of appreciation together for one of my dad's servers, Dawn. 

In June, I began creating report cards for Dawn. Every time we went to the restaurant (which is once or twice a week), I would bring a report card. The card would have four unique questions and I would rate her responses by placing a colorful sticker in the column marked excellent, fair, or poor. I started these cards to get my dad engaged, listening, and talking at the table. I am not sure I was successful, but my mom and I enjoyed it and we learned a lot about Dawn and Clyde's in the process.

Today I presented Dawn with the 20th and last report card. In order to acknowledge her efforts with these cards, I also created a certificate of appreciation and I put together these flowers that I bought at the farmer's market. 

Four of my report cards. Mind you I cut them out and paste each report card to a colorful index card. Believe it or not, Dawn saves these cards and has showed them to her fellow servers, Clyde's managers, and her family. She assures me, no one has ever done this for a server!

Dawn was very surprised and touched today! You will notice on the table is a pile of change. This is another game we play. For every silly or ridiculous comment my dad makes to Dawn, she gets a coin. Examples of silly things... "is the food fresh?" or "do they allow tipping?" Needless to say, Dawn has a jar full of coins now!

Dawn is a great sport and support! My dad loves her and it is worth the trip to Rockville, MD to see her. She brightens our days and the other day, the manager at the restaurant gave me a big hug and kiss. She sees what I do each week, and though I expect no acknowledgment, it was very touching to get it!

Friday, September 2, 2022

Friday, September 2, 2022

Tonight's picture was taken in September of 2008. It was Mattie's second month with treatment and by this point he really understood the routine and being confined to a his room. However, that did not stop him from being a kid and wanting to have fun. That evening Peter blew up gloves and Mattie and I thought they looked just like turkeys. Mattie was doing a little show with these gloves and tried to catch the attention of nurses and whoever passed by in the hallway. Got to love his spirit.  

Quote of the day: Act as if what you do makes a difference. It does. ~ William James

This morning I got up at 6am, so that I could give Sunny his pre-meds and an hour later his chemo. It was a busy day, as I had to get my mom to the hospital for a pulmonology appointment and also drop my dad off at his memory care center. I feel like I am running and running and never have a minute. 

After my mom's appointment, I suggested that we sit in the atrium of the hospital lobby and have tea. I needed an hour to not to be running around. While there, my mom snapped this photo. Today I have a migraine and the tell tale sign is my eyes are not even and hard to keep open. While in the atrium our favorite pianist was playing.

I have been to a lot of hospitals, but Virginia Hospital Center is very patient focused. Everyday from 11am to 1pm, there is a pianist in the atrium playing music. I swear I felt like I was sitting listening to a concert. It was peaceful and it reminded me how much I love and miss music. 

This is a video of Aija Kim (from YouTube). She is the musician who volunteers her time weekly to play at the hospital. She plays absolutely beautifully and with great feeling. As many of you know, I am GOOD at complaining, but I am also good at providing praise when it is earned. Each time I hear Aija, I go up to her and tell her what a huge difference she is making to our lives. Her music is a gift, especially when my body, mind, and spirit are exhausted. I plan on writing the patient relations people at the hospital letting them know how much this music program means to me and so many others in the atrium.

Meanwhile, September is childhood cancer awareness month. This summer, I was contacted by the American Psychological Association's Caregiver Wellbeing Special Interest Group. They told me they wanted to do a social media campaign in honor of this month and focus on the Psychosocial Standards of Care. I was ABSOLUTELY behind this project and had the opportunity to work with Allie, a doctoral student and member of APA. The campaign was launched yesterday and there will be postings every day this month. I am deeply grateful to APA's Division 54 and their commitment to the Standards and for especially highlighting the importance of psychosocial care and support (NOT JUST THE MEDICINE) during this awareness month. 

Here are some of the postings that went out between yesterday and today. During this month, quotes from Mattie Miracle will be featured, along with messages from all the first authors of each chapter in the Standard of Care publication! I admire the commitment of the authors of the Standards, as they continue to give freely of their time and expertise to move this vital project forward. 

This is Dr. Lori Wiener. Peter and I have worked closely with Lori since 2011. It is thanks to Lori's leadership that our vision for Standards of Care became a reality. I am continually amazed by who has come into my life thanks to Mattie. Lori is one of those gifts. There is nothing she can't accomplish and though my world is filled with caregiving for my parents, when opportunities arise, Lori always includes us. This means a lot to me. 

Thursday, September 1, 2022

Thursday, September 1, 2022

Tonight's picture was taken on September 1, 2009. Putting this into context, seven days later, Mattie died. Pictured with Mattie was Jenny, one of Mattie's art therapists. Mattie was in tremendous pain and Jenny was doing her best to try to distract Mattie with a remote controlled dinosaur. Mattie was watching and trying his best, but he had his pain pump next to him and was miserable. 

Quote of the day: I have a theory about the human mind. A brain is a lot like a computer. It will only take so many facts, and then it will go on overload and blow up. ~ Erma Bombeck

At 7:30am, I got a call from Mattie's doctor. Peter and I are very fond of her and we support a child life professional at her hospital. She wanted me to know that our wonderful child life professional has left for personal family issues. I am deeply saddened by this because we loved her and she represented Mattie Miracle's mission beautifully. In addition to this huge loss, I got an education about the health care field post COVID. Apparently there are 200 vacant child life professional positions throughout the country! They just can't be filled mainly because child life professionals have become burnt out from overwork during COVID, they aren't paid enough, and many would rather have an office job or work from home. Of course I do not know how one does child life work from behind a desk, as child life is very hands on and uses education, medical play, and distraction techniques to help children cope with testing, treatment, and other difficult hospital experiences. This leaves me wondering the health of our endowed programs! So that did not start the day off on a positive note. 

In addition, Mattie's doctor told me that emergency rooms are so short staffed that you can get admitted there and NEVER see an actual physician. Physician assistants are taking their place and I know full well that you can't compare a doctor to a physician's assistant. I am absolutely stunned! What is happening to the state of healthcare??!

Later in the morning, I got a call from my dad's physical therapist. She made room in her schedule to see him today! I was thrilled because I am having trouble motivating him at home. But Cassidy got him up and moving today and she really perked me up. 

Peter sent me this photo today from Boston. Today is his parent's 60th wedding anniversary and I made them this photo fleece blanket. Apparently it was a hit! Which makes me happy. 

Wednesday, August 31, 2022

Wednesday, August 31, 2022

Tonight picture was taken on August 16, 2008. Mattie began treatment about two weeks prior and this particular day was NOT good emotionally. Mattie's friends dropped off a giant bubble kit and Peter got Mattie outside to try it! These gifts were amazing diversions for us and frankly I am not sure how we would have survived without Team Mattie. These gifts enabled us even for a brief moment in time to change the mood and forget our fears and worries. Naturally this did not last long, but sitting in fear, stress, and anxiety all day long wasn't sustainable, and these gifts provided the necessary outlets to survive. 

Quote of the day: Realize that if you have time to whine and complain about something, then you have the time to do something about it. ~ Anthony J. D’Angelo

Though I appreciate tonight's quote, I can't seem to follow the author's advice. On the other hand, I can't say I lament and whine on a regular basis. I am just too tired to do that, but even though I have a lot on my plate and could complain, I am not sure there are any clear solutions to resolve my stress. 

So far I have had a very full day. Yet despite being constantly busy I am unable to get my dad to do his in-home PT and OT exercises and for the last two days, I can't even get him to meet his 1,000 step daily walk goal. So I am frustrated. There is only one of me and both of my parents need constant support. 

After I got my dad up, washed, and dressed, and he finished breakfast, I took him to his memory care center. When I got back to the house, I had to get my mom in the car because she had a physical therapy session. I think my mom is coming to some understanding that she has a significant problem. She always  loved to walk. Last night after dinner, she wanted to walk in the backyard, on our stone patio. The physical therapist has told my mom that walking inside is much easier than outside, so now my mom has it in her mind that she needs to walk outside. All great and wonderful, but with this she needs support and supervision. 

So after loading the dinner dishes into the dishwasher last evening, I ran outside to walk with my mom. She had to hold onto me for the entire walk. I have begun to encourage her to use a can, but she refuses. My goal is to confront the physical therapists next week and ask them to come up with some strategies for us to implement at home to assist my mom with her balance and walking. 

After therapy, I came home for an hour to unload the dishwasher, fold and put away everyone's laundry, and of course I am also balancing Sunny and his antibiotic and chemotherapy regimen. I honestly do not know some days what I am doing first. Once these chores were done, I got my mom in the car and we went to pick my dad up from his memory care center and I took them out for a late lunch. 

I am not the kind of person who likes to eat out very often. But with my parents, there is no winning. Whether I cook at home or go out, it is almost equal the amount of work. While Peter is traveling, we do go out everyday, because it prevents my dad from sitting around the house and it forces him to move his body and interact with the world. Eating out is his best form of therapy and food is the only thing that motivates him. It is a sad commentary. 

If you were to observe my dad, what you would experience is a very self focused and demanding individual. He has NO insight into how any one else is doing or feeling, but is adapt at getting his needs and demands met. It is exhausting and at time aggravating. Eating with my dad is sickening, because he gulps down food and then watches me eat, as to hurry me along (newsflash, I am a slow eater, but I can't eat at my own pace, because as soon as he finishes, I have to take him to the bathroom). He also doesn't like us talking to the servers because it takes up time and he is solely about consuming food and leaving. It truly is a very depressing way to live. I remind myself all the time that this is the result of having dementia, but there is no break for me, because if I am not dealing with my dad, the rest assured I am dealing with my mom. 

Tuesday, August 30, 2022

Tuesday, August 30, 2022 -- Mattie died 674 weeks ago today. 

Tonight's picture was taken on August 5, 2009, the day after we learned Mattie's cancer diagnosis was terminal. That day Mattie was entertained in clinic, while Peter and I met with his doctor. I will never forget that meeting. Mainly because we think we are living in the 21st century with access to top notch medicine. But the sad reality is medicine is limited when it comes to cancer. It was almost impossible to rationalize that there was NOTHING else we could medically do for Mattie. In one day we went from finding a cure and trying to be hopeful for a future, to accepting that we had to make tough end of life care decisions, because Mattie was dying. Pictured next to Mattie was Roxanne. Roxanne was a traveling nurse from Florida. Typically I wasn't a fan of traveling nurses, but Roxanne seemed to have great insight and compassion immediately upon meeting her! Mattie took to her, as he really was a shrew judge of character. 

Quote of the day: At the end of the day, whether or not those people are comfortable with how you're living your life doesn't matter. What matters is whether you're comfortable with it. ~ Dr. Phil

I literally dragged myself out of bed today and pulled it together. Peter is leaving for Boston tomorrow for a week, and I will be balancing the daily routine alone. I try to manage all of it myself, as Peter is busy, but unfortunately I really can't do it all alone, so I am learning! For the past several weeks, Peter has been running all the chores and has taken on Sunny's cancer care and of course caring for Miss Indie. So he will be missed, but it is important he have this time with his parents and celebrate their 60th wedding anniversary. Normally this would be something I too would attend and Sunny and Indie would be in tow. Since November of 2021, I have done nothing but solid caregiving. 

Today, Peter drove my mom to Georgetown for a hair appointment. This is about a 40 minute drive with traffic. So that is 40 minutes there and 40 minutes back home. I was grateful he took this on, so that I only had to pick her up when she was done and come home and not make the trip twice. When Peter dropped my mom off, he called me immediately. He wanted me to know that she walked into the wrong salon and therefore I had to figure out how to rectify this as he was driving. Georgetown is a busy place and it is hard to find places to park and even lay by. Peter dropped her off about a half of a block away from the salon, but my mom walked the other way, away from the salon. This surprised Peter, as he isn't with my mom by day and wasn't aware of the extensive nature of support she needs. She needs as much support as my dad, perhaps in a different way, nonetheless, I can't leave either of them unattended. Thankfully my mom answered her phone and I got her turned around and to the right salon. My mom has been at this salon for months now, so it wasn't a question of it being a new experience. 

While my mom was at the salon, I helped my dad do his walking routine and brain exercises. Then I had about an hour to myself to get things done. I called the neurologist office because I still did not get my mom's results back from her transcranial ultrasound that she took on August 10. Fortunately the person on the phone was very helpful and immediately uploaded the results to the portal, so I got to read through them. I certainly don't understand everything, but I understand enough to know that there is a vascular issue that is either causing dementia or Parkinson's. I haven't discussed this with my mom yet as I am waiting for her to do a two hour neuropsych assessment in September. But I can't wait to get answers! I want it now, and it seems like I am waiting months to get something definitive. All I know is she is teetering around, unsteady on her feet, and has good and bad days. These symptoms have come on very quickly, and show no sign of improvement with physical therapy. 

Monday, August 29, 2022

Monday, August 29, 2022

Tonight's picture was taken on August 22, 2009. Mattie was home for about a week or so, before we returned to the hospital for good. Mattie died on September 8, after many harrowing days of intense pain and an inability to breathe. 

You see Mattie holding his tooth fairy box, as he had just lost his front tooth. Mattie and the tooth fairy had quite a relationship. Mattie did not want money, instead, he wanted specific items. He always left the tooth fairy a message and over the years his requests from her were things like a necklace made out of pasta, a hot wheels car, or a Lego piece. We bought this fairy box together on one of our trips to Florida. I thought this box would bring lots of joy and happiness. To this day, this box is still in my nightstand with one of Mattie's teeth in it. 

Quote of the day: Apathetic behaviors are generally characterized by a lack of motivation and indifference. To the caregiver, the person with dementia and apathy can appear as showing less or no interest in previously enjoyed activities, lack of motivation to initiate activities (including self-care), lack of ability to persist with activities, withdrawal from social activities, and showing less emotional responses to daily events. ~  Dr. Nathan Herrmann

Last night I got in bed and felt compelled to search for "dementia and lack of interests." I am perplexed by my dad and his behavior and since I live an isolated life, I really felt the need to learn more. I keep asking myself..... is this my dad's personality or the disease!? 

What popped up during my searches was the word apathy! In fact, over the last ten years, researchers have investigated the differences between depression and apathy in patients with dementia. Certainly older adults get depression, but apathy in dementia patients is illustrated by a decrease in these three symptoms:

1. Goal-directed behaviors (e.g. starting and/or participating in conversations, doing activities of daily living, seeking social activities etc.),
2. Cognitive activities (e.g. loss of interest in news, personal, community or family affairs etc.),
3. Emotions (e.g. diminished or absent emotional responses to positive or negative events etc.).

As soon as I read these three things above, I said.... that's my dad! My dad indeed has apathy and it has NOTHING to do with what I am doing or not doing. There is NOTHING I have found that interests him. He isn't interested in reading, watching TV, talking to friends, getting on the computer, going grocery shopping (which he used to LOVE!!!!), and the list goes on. The only thing he wants to do is relax and sleep. He prefers quiet and not to hear talking, the TV on, and no loud sounds. I feel like I am living in an insane asylum, except I am the one running the facility.  

Sometimes putting a name to a problem, helps provide insight. In this case, it does help me understand that it isn't my dad being difficult. It is a disease that has stripped him of the person he used to be. That said, that doesn't mean that I am going to give up and not try to continue to provide him stimulating days. I will, but I also have to be realistic. There are apparently three types of apathy and my dad has all three. 

One of the articles I read through highlighted signs to pay attention to, and they are listed below. Again my dad has ALL of them. It makes it truly difficult to engage with him and if you were to sit at a table with him while eating, his focus is ONLY eating. He tunes you out and forget about conversation. You would be sitting in silence. In many cases it is like caring for a body all day, but the body is missing a brain in many cases. It is terribly sad but I honestly don't have much time to process this feeling, because my mom has her own host of problems which keep me very busy. 

Sunday, August 28, 2022

Sunday, August 28, 2022

Tonight's picture was taken on August 9, 2009. It was four days after we learned that Mattie's diagnosis was terminal. Mattie's child life specialist, Linda, planned this wonderful surprise for him. She arranged for Mattie to go into the Lego store at our local mall, after hours. Mattie had the WHOLE store to himself and he got to work with two master Lego builders. Mattie was all business collecting the Lego bricks he needed to create a NYC taxi cab. It was Mattie's idea to build a taxi and I am quite sure it was from his two trips to NYC for experimental treatment. He was absolutely fascinated by the hustle and bustle of the city and the wonderful skyscrapers. 

Quote of the day: Love many things, for therein lies the true strength, and whosoever loves much performs much, and can accomplish much, and what is done in love is done well. ~ Vincent Van Gogh

No matter what I say, my mom still gets up at 5:30 or 6am. However, the rest of the day, my parents are exhausted. This is a photo from around 1pm. In fact, if it weren't for me, my dad would spend the entire day in his chair. 

I provide him structure and make him, yes make him, do cognitive exercises, physical and occupational therapy exercises, as well as maintain a walking routine. He hates it and fights me every step of the way. But I am very aware of the fact that if he can't move his body, it makes it almost impossible to care for him at home. 

While they were sleeping, Peter and I  worked. My mom has this curio that she wanted hung in their bedroom. We finally got to it today. 

I know I keep posting this photo, but I feel it is important to highlight what on earth we sifted through. Or I should say, what Peter has been dealing with. Practically single handedly he went through every box and bin of my parents and helped empty them. 

I am working on making the basement livable particularly because my dad's colleague is coming to stay with us in September. This won't be what it finally looks like, but for now, I feel it is beginning to look like a house and not a warehouse. Peter and I hung many of my dad's Warner Brothers framed art today. We want this part of the basement to be an entertainment area, so we figured these Looney Tunes cartoon cells would work. 

Many of the cartoon cells my dad received over the years. 

When my paternal uncle died, I got this poster of the Creature of the Black Lagoon. My uncle wanted me to have it, as he was involved in the 1982 TV production. In addition, if you look closely you will see an X on one of the round buildings (Marina City). This is where my uncle used to live. 

A close up of one of my dad's posters. It was given to him when he worked at Warner Brothers, because if you look closely the Menu has "Sardi" written on the front of it. Of course the menu pertained to the famous Sardi's restaurant in New York. But for years this framed art was in my dad's office.