Saturday, November 11, 2023

Saturday, November 11, 2023

Tonight's picture was taken in November of 2007. Mattie was five years old. That day we walked down to Constitution Avenue, by the National Mall, to watch the Veteran's Day parade. Ironically this was the first and last parade we ever saw. When I was listening to the radio this morning, the commentator mentioned that THIS YEAR is the first National Veteran's Day parade on the Mall in Washington, DC. Prior years it was funded by the city, which explains why the parade was not an annual occurrence. I am so glad we experienced this event as a family and we captured Mattie in the moment. In retrospect, life was much simpler and happier then. 

Quote of the day: I could not count the times during the average day when something would come up that I needed to tell him. This impulse did not end with his death. What ended was the possibility of response. ~ Joan Didion

I was reading the newspaper the other day, and came across an article about loneliness and social isolation. So I went to the internet to read more. Here is a link to the article, if you are interested..... Loneliness or social isolation linked to serious health outcomes, study finds.

The article defines both social isolation and loneliness as.........

Social isolation occurs when someone has an objective lack of contact with other people and can involve having a limited network or living alone.

Loneliness, on the other hand, refers to the subjective distress people feel if there’s a discrepancy between the quality of social relationships they actually have and what they want.

People who experienced social isolation had a 32% higher risk of dying early from any cause compared with those who weren’t socially isolated. Participants who reported feeling lonely were 14% more likely to die early than those who did not.

The article mentions that Americans are spending more and more time in isolation and yet we don’t see it as a danger — particularly if it is by choice. People assume that it’s okay and may even be good for us to be isolated if we don’t feel lonely,” Yet data confirms the risk associated with social isolation regardless of and independent of loneliness.

Social isolation and loneliness caught my attention because I think both can easily be prevalent with intense caregiving. Naturally I am not socially isolated per se because I have a full house of people. But what happens when my primary contacts each day have dementia. It is a form of social isolation that the article doesn't account for because the kind of mental stimulation and connections I have with cognitively intact people is quite different. 

Naturally given my full days of caregiving, managing doctor appointments, paying bills, cooking, cleaning, and laundry, loneliness can be pervasive. I am not complaining as I have friends who are in contact with me daily through messaging and though I feel out of the loop, they remind me that I am important in their world. Which is lovely, especially when I don't know which way is up some days. 

What I can say is that loneliness can be a killer. It is a topic I am familiar with, as when Mattie was diagnosed with cancer, our world changed on a dime. I was unable to teach, I was unable to serve in my association leadership role, and I was unable to serve as the chair of the licensure board. My world came to a grinding halt, and instead it was replaced with living in a two by four of a hospital room, facing medical decisions and life and death issues on an hourly or minute by minute basis. The nature of my environment was socially isolating and could of produced loneliness. However, I do think the human mind and spirit adapts. I found comradery in Mattie's medical providers and in our community based Team Mattie. This group of people provided me with a protective factor on the most dire of life's circumstances. 

Though I am faced with intense caregiving yet again, the situation is different. I don't live in a hospital and the kind of daily support I received back then is not applicable in my current situation. But not unlike with Mattie's illness, caregiving can play a mind game on me  and it takes a great deal of inner strength to recognize that I am not socially isolated. All that said, I am cognizant of the toll my current situation is having on my day to day existence and my future. 

Friday, November 10, 2023

Friday, November 10, 2023

Tonight's picture was taken in October of 2008. Mattie was in his third month of treatment. It was an exciting day on the pediatric in-patient floor. A big donation of toys, games, and videos arrived at the hospital. Mattie's child life specialist, Linda, understood that Mattie thrived on having responsibility and a task. So literally Linda invited Mattie into the hospital playroom to help her sort items. Naturally with sorting also came the option of picking several toys for himself! I will never forget Linda and the amazing work she did with Mattie. They were best buddies. 

Quote of the day: The people we most love do become a physical part of us, ingrained in our synapses, in the pathways where memories are created. ~ Meghan O’Rourke.

This morning I woke up, opened my blinds and this was what I saw! Yes two bucks, locking horns, and dancing around the yard. I don't think I have ever seen this in the wild before, so I found it absolutely fascinating. 

If I told you about my morning, you would most likely say.... are you kidding?!!!! Here is a highlight:

• Fed Indie, the cat
• Tried to medicate Sunny and feed him. No avail.
• Went outside, picked up newspaper and brought trash bins back. 
• Then took a shower, got dressed. 
• Prepped breakfast for everyone.
• Cleaned Cat litter box.
• Vacuumed first floor.
• Cleaned kitchen counters.
• Went back upstairs. Woke my dad up.
• Got my dad in the shower, made my parent's bed, cleaned the bathroom, and collected upstairs trash. 
• Got my dad out of the shower and dressed. 
• Back downstairs to try to eat breakfast, while balancing my dad's bathroom needs. 
• Assisted my dad on his morning exercise routine. 
• Then went grocery shopping. 
• Came home, put groceries away, folded laundry and put it away. 
• Opened up all Amazon Gift boxes delivered to our home for the Foundation. Processed items inside. 
• Tried feeding Sunny again, and cooked him fresh chicken thighs, in hopes that would entice him to eat. 

When I was done with that, I would have loved to sit down for a minute, or actually get Foundation work done. Forget it! Instead, it was time to take my parents out to get soup. I wanted them to eat something mid-day, but nothing heavy, as I cooked dinner at home. I believe getting out of the house is important each day. At the very least it gets my parents moving, walking, and interacting with the outside world.   

I took my parents to our local Panera. There are many soup varieties, so there is something for everyone. This was the second time I took my parents to this store, and ironically the manager remembered me from the first visit. Of course given how I travel, I am a memorable sight. As I hold hands with my mom while she walks for balance, my dad uses a walker, and on my shoulder I am carrying a large tote bag filled with my dad's items and activity books, and in my hand I am carrying my dad's seat cushion. So in essence I am a traveling show. 

While at the counter today, the manager took my order. I opened up my wallet to get my Panera loyalty card and the manager saw this photo! He asked me if this was my son? I said yes. He said that his son looks just like my son. We both laughed. I told him my son's name is Matthew and he said his son's name is Adam. He asked me how old Mattie was, and I said 7. Technically that is true! He said his son is the same age and he showed me a photo of Adam. 

I know after Mattie died, when I would open up my wallet and someone commented on his photo, I would feel mortally wounded. Sometimes I would bluntly say that Mattie died, and other times, I would say nothing. It depended on my mood and how I felt about the interaction I was having! 

It has been a LONG time since someone commented on my wallet photo! This manager at Panera is so nice, and he was making conversation, I did not want to burst his bubble by telling him that my son died 14 years ago. The other issue that comes to my mind is that I am clearly not as young as this manager. His son is 7 and mine would be 21. However, he did not seem to skip a beat thinking that I had a 7 year old. Not sure what to make out of that, other than for me Mattie will always be 7, and in a way, I feel locked at the same age I was when Mattie died. Time marches on, but my mind and heart have not. 

Thursday, November 9, 2023

Thursday, November 9, 2023

Tonight's picture was taken in October of 2008. Mattie was getting admitted to the pediatric intensive care unit that day. I can tell because he was wearing real clothes. Mattie only wanted to wear pajamas when he was living in the hospital. Given all that he had to contend with, I went with his preferences! That day, we went to the child life playroom and they were decorating pumpkins! As you can see Mattie painted and decorated the pumpkin in front of him. Mattie was a big pumpkin fan and thankfully loved to create. As these artistic activities helped all of us survive the long hours, days, weeks, and months in the hospital. 

Quote of the day: Denial helps us to pace our feelings of grief. There is a grace in denial. It is nature's way of letting in only as much as we can handle. ~ Elisabeth Kubler-Ross

For the past month, I have been having trouble sleeping. I am highly anxious and feel like I am having some of the same feelings and difficulties that I did when Mattie died. I contacted my doctor yesterday and she re-prescribed medication to help me sleep. It worked in 2009/2010, but it had no effect on me last night. I was wide awake and feeling like I was in a panic. I think I finally fell asleep at 5am, just in time to get up at 6:30am. 

In any case, when I got up, I opened my bedroom blinds and was greeted by a street full of dump trucks. In addition, several of my neighbors text messaged me telling me that this chaos had begun at 5:30am. 

My neighbor, directly adjacent to me, is renovating her house and it will be quite extensive. On top of the countless other stresses in my life, I would add living in this neighborhood as high on my stress list. I haven't had a moment's peace here and living next door to a construction zone adds to the frenzy. Neighbors are upset about this construction, so no matter where I turn I am dealing with issues. 

Mid-day I took my parents out for frozen yogurt. The lady who manages the store is so nice to us, that she gave my dad his yogurt for free! While chatting over yogurt, my dad thought it was April. I tried to re-orient him by looking at the trees. He observed that they had changed colors and some had fallen off the trees. Therefore, it must be Fall. Within the last month, my dad's decline has been noteworthy. He seems more exhausted, more disoriented, and is appetite is declining. All NOT positive signs. 

At around 4:30pm, after prepping dinner, I took Sunny for a walk. Sunny has been on a hunger strike all day and refused his medications as well. So I know going for a walk helps to reset both of us. Sunny moves slowly, but I am okay with that. It gives me time to catch my breath and observe the greenery around me. 

Can you see the three deer watching us as we were walking?

This fellow was beautiful. His fur was practically a cocoa color. There was something about him that reminded me of Bambi. This was a movie I saw multiple times with Mattie. Of course neither Mattie nor I liked the part of Bambi's mother dying. It got us every time. 

Wednesday, November 8, 2023

Wednesday, November 8, 2023

Tonight's picture was taken in October of 2008. Faithful blog readers have heard me talk about Chris, the president of the chemistry club at the University. Well this is him! Therefore I know this photo was taken on a Friday. Mattie was in his room recovering from surgery on his right arm. Therefore Mattie wasn't leaving his room, and yet he did not want to miss a session with Chris. So Chris brought the club into Mattie's room! Together they made slime!! I will never forget Chris, whose goal was to go to medical school. He definitely had what it took to relate to kids and their parents under the worst of circumstances. I will never forget him or his bond with Mattie. 

Quote of the day: The fact that you can feel pain like this is your greatest strength. ~ JK Rowling

Sunny had his 6 week follow up at the oncology office today. He basically gets scanned every 6-8 weeks to determine the next course of action. The oncologist is very worried about Sunny's quality of life and doesn't want us to prolong his life if he is in pain or suffering. Of course I couldn't agree more. Sunny is my dog baby and there is NO WAY I would allow this to happen. The good news is that Sunny's tumors are stable and in fact some of them continue to shrink. That said, I have not given Sunny chemotherapy since Friday. He is supposed to get it every other day. But I felt that Sunny wasn't eating and had bouts of diarrhea. Therefore he needed a break. I did not consult the doctor, I just did it! I made the right decision. Sunny is holding his weight at 60 pounds. However, Sunny needs to be lifted in and out of the car. I wasn't sure I was up to this today, but ironically I had NO problem lifting 60 pounds. Not sure what that says about me. I do not think it has to do with strength, for me it is more like I am going to rise to the occasion to meet whatever care need is necessary for someone I love. 

My dad was at his memory care center today and mid-day, I stopped what I was doing to take my mom out for tea. She enjoys getting out of the house each day, and given the stresses of our days, we like going to Starbucks. It gives us two hours of peace. We people watch and take in the hustle and bustle around us. Truthful while there we feel more 'normal.' Needless to say I have gotten to know most of the baristas there. In fact, they start working on our tea order as soon as we walk through the door. Today's barista was a lovely fellow and when I saw him he joked with me and said he had a tear in his eye when he saw me. Overall however, most of the baristas understand that I am caring for my mom and they go out of their way to assist me. Kindness and even small kind gestures make such a difference in my daily routine. 

Here is today's funny story. It is entitled, Deer charges through crowded Wisconsin restaurant. You really have to see the video in the article! But what I think is particularly funny is that the restaurant then had a special of "2 buck mac and cheese!"

Tuesday, November 7, 2023

Tuesday, November 7, 2023 -- Mattie died 736 weeks ago today. 

Tonight's picture was taken in October of 2008. Mattie was in the hospital and recovering from his first limb salvaging surgery. That day we got him up, in a wheelchair, and to the child life playroom. He was surrounded by several of his favorite women..... Whitney (child life intern), Lesley (child life intern), and Jenny (Art Therapist). In order to get Mattie to use and clear out his lungs, post-surgery, they pulled out all the bubble making materials. Mattie and his side kicks were blowing non-stop bubbles. So much so that the room was a bubble mess! But the point is that Mattie's team rose to so many challenges and worked hard at making his life as good as it could have possibly been. 

Quote of the day: To lose someone you love is to alter your life for ever. You don’t get over it because ‘it” is the person you loved. The pain stops, there are new people, but the gap never closes. How could it? The particularities of someone who mattered enough to grieve over is not made anodyne by death. This hole in my heart is in the shape of you and no-one else can fit it. Why would I want them to? ~ Jeanette Winterson

This morning I got up even earlier than usual in order to get my dad to the rehab doctor at the hospital. He sees this doctor every 6 months. My dad's physical therapists are seeing the decline that I witness in him and they have suggested that I talk to the doctor about in-home professional services starting back up with him. That way, he will get almost four sessions a week of therapy.

Getting my dad out the door in the morning is hard enough, but my mom is far more complicated. She needs to be managed and herded! Unfortunately my dad doesn't remember being hospitalized in March of 2022 for two weeks. Back then, he needed a pacemaker because he had a second degree heart block. That surgery and recovery was about a week. But a week lying in bed, is equivalent to like months for us. So he atrophied, he had trouble walking, standing, and doing anything independently. Back then I had to fight hard to get him transferred to the hospital's acute care unit versus going into a nursing home. Thankfully it was at that point, I met my dad's rehab doctor, who changed the course of my dad's future. Because I am quite certain if my dad was admitted to a nursing home, he'd never get out!

The doctor kept us waiting for about 40 minutes today. He had other medical emergencies to address, so we patiently waited. One of his patients was a young girl, maybe in her twenties, who came in with her parents. She was having trouble walking and was using arm braces. To me she had a progressive neurological disease and my heart went out to her and her family. Seeing what others are dealing with enabled me to have great patience today while waiting for the doctor to get to my dad. 

The doctor is originally from Brooklyn and we understand each other. He indeed prescribed more therapy for my dad and encouraged him to listen to me and walk. But I know my dad will not! Which is why I turf these issues out to professionals! My dad is very focused on sleep. He has convinced himself that he needs a sleeping pill at night. Mind you the one thing he gets an A+ in is sleep. In fact, if I did not get him up and moving, he'd sleep the day away. The doctor talked to him about the problems with sleeping pills and then wrote him this script! He has a sense of humor doesn't he??? Basically the script says he doesn't need sleeping medicine and has to walk!

Monday, November 6, 2023

Monday, November 6, 2023

Tonight's picture was taken in October of 2008. That evening Mattie was gifted a piano keyboard. He received it from our favorite musical volunteers, who visited us from the first week Mattie was admitted to the hospital. We absolutely loved this duo, who brought music, laughter, and happiness to our lives. In fact, Jerry would email me before coming to the hospital, so that he could be sure to play songs Mattie knew! There was always a contest involved, and Mattie loved the 'name that tune' competition. In any case, that evening, Jerry gifted Mattie his own keyboard! A very generous and kind gift! This was is the perfect example of the caliber of people we interacted with, and who will never be forgotten by me. They live on in my heart. After Mattie died, I gifted this keyboard to the pediatric intensive care unit, so that other children could enjoy the gift of music. 

Quote of the day: Sorrow makes us all children again - destroys all differences of intellect. The wisest know nothing. ~ Ralph Waldo Emerson

After my morning chores, I dropped my dad off at his memory care center. Then I ran to the post office and CVS. At the post office, I parked and stepped out of the car. There were leaves piled up, so I did not notice that the leaves were covering a storm drain. I literally went sliding, with my feet practically in the storm drain. Thankfully I have good balance, and I pulled myself out of the drain, but this was extremely dangerous! 

I ran home and jumped on a conference call. I had the opportunity to interact with a senior in college who is doing her capstone research project on childhood cancer. She learned about Mattie Miracle's Psychosocial Standards of Care from interviewing a researcher at Dana Farber. I have interacted with many high school and college students over the years that I have run Mattie Miracle. But today's interview seemed different right from the beginning. The young ladies questions were far more thoughtful, insightful, and meaningful! Guess why? THAT'S right, she is a cancer survivor herself! I always say that those of use touched by cancer speak a certain language, we just understand each other immediately. 

We covered a lot of ground today from my personal cancer experiences with Mattie to running the Foundation. One of the last questions this student asked me was if there was a memory I wanted to share with her that highlighted the support within our community. Naturally there were many stories I could highlight, but I shared with her the story of Mattie during Halloween. 

In Halloween of 2008, Mattie was recovering from his first limb salvaging surgery. His arm was bandaged and he was walking very gingerly because he was afraid of falling and getting injured. That evening we went to his preschool buddy's (Zachary) house to trick or treat. Zachary had many friends in the neighborhood who tagged along with us. Naturally the kids were excited to run around and collect as much candy as possible. However, Mattie was not running. It was too dark and he was frightened. So he was walking slowly and in essence slowing down the group. Zachary's neighbors encouraged him to ditch Mattie. Certainly he could of, but that was not what Zachary did. Instead, he told his neighbors to go along without him, that he was staying with his friend Mattie. That may not sound earth shattering, but this came out of the mouth of a 6 year old. Sure Zachary wanted more candy, but what this showed me was friendship, loyalty, and commitment mean much more than tangible items! I too share this philosophy, but it was inspiring to witness this, and to see Mattie feel important, included, and cared for by a dear friend. That story remains with me now and forever. 

Here is my funny story for the day! Interested in a necklace made out of giraffe poop? I kid you not! This box was seized at a Minnesota airport. Just in case you wanted to know, you can't bring in hoofed animal feces into the USA! Don't take my word for it, here's the article entitled, Planned to make a necklace': Airport agents seize giraffe poop from woman returning to US.

Sunday, November 5, 2023

Sunday, November 5, 2023

Tonight's picture was taken in October of 2008. I know exactly what was happening here, just by the nature of the photo. Mattie was going to have a MRI. Given the scary nature of these scans, Mattie had to be sedated. Especially since his scans lasted about 90 minutes to two hours. Early on in Mattie's diagnosis, he endured a MRI without sedation. That did not go well, and therefore all subsequent scans, Mattie needed sedation. Sedation was a big procedure because Mattie was not allowed to eat or drink anything from the night before and the process took longer both from a prep and recovery standpoint. Mattie never came out of sedation well. He would become angry and agitated. Therefore, the sedation team had to give Mattie an anti-anxiety med as he was waking up from sedation. Nonetheless, we endured this process every few months. This photo was taken while Mattie was waiting for the sedation team. We tried to keep Mattie busy and engaged, so he would not focus on what was about to happen!

Quote of the day: I know why we try to keep the dead alive: we try to keep them alive in order to keep them with us. ~ Joann Didion

It was a glorious weather day today and though I really wanted to go for a walk, I decided I better get in the backyard and do some cleaning up. I am not sure Sunny was pleased with that decision. I must have spent about three hours outside, cleaning out flower pots, trimming back plants and bushes. There is a lot more to do, but I had to start somewhere. I also cleaned and bagged all our outdoor chair pillows. Some winters I get lazy and forget about them, but this year, I decided to get a jump on it, especially when the weather felt so lovely to be outside. 

Sunny is on a hunger strike. He basically refuses his pills and all sorts of food. I keep at it, but it is frustrating, when his care is not the only thing I am balancing. I am a person who likes to help and support others and when I find my efforts aren't working, this can send me down a rabbit hole.

I took my parents out for brunch today and on the drive home, my mom started to panic. She was having a massive nose bleed. Literally there wasn't enough tissues to manage the blood. It got all over her and the car. Of course I was driving and I was on a road that I couldn't pull over. Needless to say, when I got home, I left my dad in the car and rushed my mom inside. I stuffed her nose tightly with a tissue, put her on the couch, and put an ice bag over the bridge of her nose. Slowly the bleeding stopped. But it was a total crisis. She was hysterical, my dad was confused, and I was running around trying to manage everyone. 

I reminded my mom that the nose will crack when dry just like the skin. Fall/Winter weather exacerbates this dryness, making it the most common reason for nosebleeds. Hearing this helped my mom calm down, because her immediate fear was this was the start of her lung condition problem (which also can cause intense nose bleeds). In any case, I started the vaporizer in her bedroom and I will have her use a saline nose spray daily for moisture. 

Now onto my fun story of the day. I started doing this two days ago, and somehow I really enjoy it. I was listening to the radio and they highlighted the Levi's jeans CEO. He discussed why you should NEVER wash your jeans (to preserve the indigo color)! Literally I couldn't believe what I was hearing. Maybe because I live in a house where I am constantly washing what my parents are wearing. In any case, you got to read this article for yourself! Did you know they are recommend putting your jeans in the freezer rather than washing them? I don't know about you, but this notion makes me want to laugh uncontrollably!

Levi's CEO explains why you should never wash your jeans