Saturday, October 29, 2022

Saturday, October 29, 2022

Tonight's picture was taken in October of 2003. Mattie was a year and half old and to me was the cutest little pumpkin around. Mattie did not understand the concept of Halloween yet, but he and I still went out together and picked some sort of themed outfit for the occasion. Mattie gravitated to the color orange, so when I saw this sweat suit at Target, I knew this would be a winner. Mattie preferred soft materials and nothing that would restrict his movement. 

Quote of the day: Grief is not a disorder, a disease or a sign of weakness. It is an emotional, physical and spiritual necessity, the price you pay for love. The only cure for grief is to grieve. ~ Earl Grollman

Last night we went to a friend's house for about three hours. The marathon I had to run just to enable this to happen was intense, because I had to make sure my parents were fed and taken care of before leaving the house. Which is why I am not eager to make any appointments. I am a social person, but caregiving most definitely has turned me inward. By the time I got to my friend's house my head was pounding and I felt dizzy. It eventually subsided but to look mentally and physically together for three hours is hard. As I know nothing about my daily life is normal. 

Apparently while we were gone, Sunny was trying to work my parents for attention. It did not work, but you can't blame a fellow for trying!

We took my parents to the farmer's market today. My dad did a few laps of walking with Peter, but then wanted to sit in the car and wait for us. Rather than sit using his rollator and engage in conversation with us and the vendors. Last night while talking to my friends, whose parents have dementia, it confirmed to me that not all people with dementia avoid socialization.... like my dad. My dad avoids it at all costs. 

Later in the day, Peter and I took Sunny for a walk. As soon as we stepped outside, I heard a woodpecker in our birch tree. Do you see it?

After our walk, we came home to a big Amazon wish list delivery! 

Boxes everywhere and soon I will need to begin organizing the contents. I am very grateful to our supporters who contribute each year!

While we were out, this was our view in our family room. Both parents were out! Mind you if they aren't moving, they are sleeping, at all hours of the day. 

Friday, October 28, 2022

Friday, October 28, 2022

Tonight's picture was taken in October of 2004. Mattie was two and a half years old and by this time he understood what Halloween was about. We picked out his costume together at Target, the only store Mattie liked going into. Mattie was not a shopper and forget about taking him to a shopping mall. The only thing a mall produced was a meltdown. Mattie was very sensitive to loud sounds, crowds, and the materials he wore had to be soft. He eventually grew out of this with a lot of assistance from his amazing occupational therapist. I will never forget picking out this outfit and I always thought Mattie made the cutest pooh!

Quote of the day: When someone you love dies and you're not expecting it, you don't lose her all at once; you lose her in pieces over a long time—the way the mail stops coming, and her scent fades from the pillows and even from the clothes in her closet and drawers. Gradually, you accumulate the parts of her that are gone. Just when the day comes—when there's a particular missing part that overwhelms you with the feeling that she's gone, forever—there comes another day, and another specifically missing part. ~ John Irving

Every day this week it was something! Today was no different. My dad went to the memory care center today, while my mom had physical therapy. Though my dad travels with a mini notebook and pen in his shirt pocket, he rarely uses it. Or let's say he uses it only to record the food he eats. So he was at the center for 5 hours today and all I know is what he ate for lunch. He recorded nothing else and remembers NOTHING else. His memory is so bad now that even if I look at the center's calendar with him, it doesn't jog his memory. At first I thought that my dad was participating in a different classroom, which follows a completely different schedule. Unfortunately after checking with the staff, my dad has not changed classrooms, he simply can't retain information. It is a rather scary notion, as he can't remember things passed one minute. If that long! 

Our friends have invited us to their house tonight, and to do this I had a lot to juggle to make this possible. Both of my parents need to be fed, things need to be cleaned up and they have to be relaxing in the family room, before I can move. Of course I can't stay out late because I have a bedtime routine to complete with my parents. Truly leaving the house without my parents is stressful, which is why I never do it and haven't connected with friends for almost a year. 

After my mom's therapy session, I took her out to lunch. At lunch she talked about her career again and the pension that came with being a NYC teacher. Planning for one's future was important for my mom. I think it is rather ironic that even with all that planning I am doing the full time caregiving. Putting that aside, it is hard to hear about her career time and again. Because what it reminds me is I don't have one. I went from graduate school, to being a mom (yes working part time, which felt like full time work and then some) to having a child diagnosed with cancer and then Mattie dying. This changed my trajectory and now when I have so much I want to accomplish, I can't, because I once again have become a full time intense caregiver. It is very frustrating. My mom likes to compare her life to mine and today I was in no mood. I basically told her not to go there because she can't compare having a child with cancer, who then dies! Yes not very compassionate of me, but I am only human and some days I snap. 

Meanwhile, these boxes belong to our Fall Item Drive. It is wonderful to see the boxes of things coming in for our hospital snack & item carts. At some point I have to begin processing what is inside, but for now, I am deeply appreciative of the generosity from our supporters. 

Thursday, October 27, 2022

Thursday, October 27, 2022

Tonight's picture was taken in October of 2007. That weekend we took Mattie to Glen Echo Park in Maryland. I loved this park because they had this old world Dentzel carousel and theatres for children. Mattie loved the puppet theatre, which used marionettes. It was a great company and Mattie loved every show he ever saw there! I will never forget this children's theatre, mainly because it had NO seats. The children sat in the center of the room on the floor and the adults sat on a step around the periphery of the room. Typically this set up would be bad for Mattie's sensory issues, but he really wanted to be there and see the show. So miraculously he would sit still and would not be troubled by all the kids around him. 

Quote of the day: Sometimes, only one person is missing, and the whole world seems depopulated. ~ Alphonse de Lamartine

This morning, I drove my parents to the hospital, so my dad could attend his physical therapy session. I have been so impressed with my dad's therapy team, unlike the team who is working with my mom (at a different hospital). I have been so impressed with my dad's OT, Speech therapist, and PT, that I wrote the letter below last evening and sent it to the directors of the outpatient rehabilitation clinic. Here it is.............................................................

Dear Sandy and Elaine,

In December of 2021, I moved my 86-year-old parents from Los Angeles, CA to Oakton, VA. They both live with me, and I am their full-time caregiver. My life has changed dramatically as managing their daily needs is a full-time job. Both of my parents struggle with dementia and physical issues that impact their ability to function independently. 

My dad was introduced to your Center in March of 2022. He was admitted through the ER, with a second-degree heart block, requiring the placement of a pacemaker. This admission was a big physical setback for him, which landed him in the hospital's acute rehab program for a week. It was through this program we met Dr. A, who then introduced us to your outpatient services. 

I am writing to you to let you know how impressed I am with your outpatient rehabilitation department. My dad has experienced OT (with Christine and Elyse), Speech (with Maria), and PT (with Cassidy and Laura). Each of these women have been incredibly helpful and what stands out to me is the curtesy, inclusion, and professionalism these therapists have for the family caregiver. I always feel like my voice is heard and that I am valued as part of the team. I can speak with great confidence about this because when I compare my dad’s PT sessions to my mom’s (which are received at a different hospital) it is a night and day experience.

I am grateful for the whole team approach with my dad, because he needs a lot of support as we try to improve his posture, strength, and develop cognitive strategies. It brings me great peace of mind knowing that your department is a resource for me and my family, and I have witnessed great improvements with my dad thanks to the dedication of your staff. 

I wanted to specifically call out our connection with Cassidy. I first met Cassidy while in the therapy room. She was working with a different patient while my dad was working with Elyse. At the time, Elyse asked me when my dad would be starting PT and I mentioned his first appointment would be in August with Cassidy. Elyse pointed Cassidy out to us in the room. What I immediately noticed about Cassidy was she was working with a difficult patient. A patient who was saying inappropriate things to her and trying to distract her from the goal of her work. The patient was relentless. I felt uncomfortable for Cassidy, but knew it was not my place to intercede. What impressed me was she remained professional, did not seem flustered by his behavior, and continued to provide him quality care throughout the entire session. Given my own professional background, I absorb a great deal about people through observation and their actions. So, I felt a level of respect for Cassidy even before personally working with her. 

Moving forward to August 2022, when my dad had his first PT evaluation with Cassidy, I would say that her presence, energy, and passion for what she does comes shining through. She exudes positivity and her can do attitude inspires her patients and gives hope to their caregivers. 

With each session, Cassidy greets us and does a check in. Specifically, she asks my dad and me about anything new to share or whether there are issues we feel she needs to work on. This may seem trivial, but I think it is a crucial part of the therapy process. My dad has moderate stage dementia and cannot recall anything from one minute to the next, therefore for the sessions to be productive and for exercises to be effectively done at home, I need to be involved. Cassidy has understood this right from the beginning, and she is also sensitive to not overloading me with too many exercises, which would make my daily caregiving routine overwhelming. 

Our experiences with Cassidy have been so positive that I am hoping to transfer my mom from her current physical therapy facility to yours. I have seen a lack of progress within my mom’s therapy sessions, and I am hoping with her upcoming neurology appointment that another script for PT will be forthcoming and that I can transfer my mom’s care to your facility, specifically to work with Cassidy. If you can provide me with any insights or guidance on how to make this happen more efficiently, I would appreciate the assistance. I feel like my mom is a fall risk and her current therapy facility is not taking this problem seriously nor providing me with strategies to help her. 

Thank you for taking the time to read about my experiences and for allowing me the opportunity to share my reflections on your therapy team. I think Cassidy, Laura, Christine, Elyse, and Maria represent your hospital beautifully. 

------------------------------------------------

The directors of the clinic were thankful for my letter and called me immediately yesterday. I then scheduled a meeting while my dad was in therapy today, so I could meet with the director and find out how to transfer my mom's care to her clinic. The director was very helpful! She let me know that Medicare no longer has a cap on the number of PT, OT, or speech therapy sessions a patient qualifies for. The only thing that matters now is that there is medical necessity and the patient is deemed to be making progress. If progress is observed then a patient can re-qualify for more services. Which is why my dad has been in therapy at this clinic for five months so far! This was extremely helpful information, because my mom's therapist keeps talking about the fact that my mom won't qualify for more services, because she has met the cap. Needless to say, I am working now on getting one of my mom's doctors to write a script for PT. The director told me that a diagnosis is NOT needed (as my mom's therapist said!), all that is needed is a stated need, like gait instability! I am very grateful I reached out to this director, because I know with healthcare, you have to understand the system, so that you can get the system to effectively meet your care needs!

After therapy, I took my dad back to the hospital atrium and met up with my mom. She was sitting, having tea and listening to the live piano music. We have gotten to know the atrium greeter, Gwendolyn. Each time we visit, we say hi to her and today she came over to us and she said that I am doing a great job. She said that my parents always look wonderful. Meaning that they look clean and put together. It was very nice of her to give me this feedback because I work around the clock to manage their care, without much regard for myself. 

Before leaving the hospital to take my parents to lunch, my mom and I went to use the restroom. I left my dad in the atrium at the table my mom was sitting at. Given he isn't mobile and has no interest in moving, I never fear he will wander. However, after I got my parents in the car, my dad proceeded to tell me that he recognized someone in the lobby, sitting right next to him. My dad said he leaned over to say hello twice, but the man did not respond. My dad's interpretation was that this man/friend blew him off! My dad was angry! It never crossed his mind that he really did not know this person and was confused. This level of confusion was a new one for my dad. I saw the man sitting next to my parents and I did not know or recognize him. But this man may attend or work at my dad's memory care center. It is possible, but highly unlikely. I then asked my dad why he did not just say... you look familiar to me. Do we know each other? I told him typically talking to strangers is a bad plan, but in the hospital atrium, I feel this is a safe space. I tried to rationalize with my dad twice and then dropped it

When we finally got home, I tried to catch up on things all around me. I had just settled at my desk to return emails, when I heard arguing. My mom came downstairs and found that Peter and my dad were watching the Carol Burnett show together. I have tried to record fun shows for my dad because more complex shows are hard for him to follow. He and Peter were enjoying the show until my mom walked in and started screaming. She did not like that show and did not want to hear it. Rationally we have many TVs in the house, if you don't like something, go watch something else in another room. But my mom can be incredibly difficult, bordering on toxic at times. Peter left the room upset, and I shut off Carol Burnett and turned on what she wanted to see. She has no regard for any one else's needs or issues and dealing with this behavior 24/7 takes its toll. Which maybe why I couldn't fall asleep last night. I was up until 2:30am, feeling stressed out, and anxious. 

Wednesday, October 26, 2022

Wednesday, October 26, 2022

Tonight's picture was taken in October of 2006. Mattie got this little pumpkin in preschool and apparently carved it himself. Naturally I was always concerned if Mattie was using anything that I deemed could hurt him (hot glue gun, a hammer, etc), but Mattie proved to have very good fine motor skills and was a natural builder. 

Quote of the day: We all die. The goal isn’t to live forever, the goal is to create something that will. ~ Chuck Palahniuk

Despite waking up early, I was running around the house this morning and was very stressed out. I developed a migraine while I was sleeping last night and it carried into today. No matter how I am feeling, I have to pull it together and function. I got everything done, but it was close to impossible getting my mom out of the house by 9:30am, in order to drive to her test and doctor appointment. 

My mom had a pulmonary function test scheduled for today. Her pulmonologist sees her every 6 months, as does her cardiologist. I have concluded my parents are getting much better medical care under my direction, then they were receiving in Los Angeles. They rarely saw their doctors there, only when problems arose. I am very upset with my parent's long-time doctor in Los Angeles, as he saw them aging and did not take a pro-active approach with their care. I reached out to this doctor many times in the last five years and each time he blew me off. As you can imagine from reading this blog, I don't take well to being blown off. 

Any case, my mom took a pulmonary function test in April. At that time she was symptomatic with her bronchial condition. My mom hates this test and gets very anxious and stressed out over it. So my role is to normalize her fears and help her emotionally through it. Fortunately the tech is fantastic! 

Pulmonary function tests (PFTs) are noninvasive tests that show how well the lungs are working. The tests measure lung volume, capacity, rates of flow, and gas exchange. The machine looks like a phone booth!

My mom had to sit in this chair and a soft clip was put on your nose. This is so all of the breathing is done through the mouth, not the nose.

Then she was given a sterile mouthpiece that was attached to a spirometer. For thirty minutes she was put through four different tests that involved inhaling and exhaling in different ways. Thankfully we learned that her lung condition is stable!

One of the highlights of my day was walking with Peter and Sunny. I am trying to make a commitment to doing this, as I haven't walked Sunny in months. Now we are surrounded by the colors of Fall. 

The colors in our backyard. 

Along our walk today! What a yellow/orange color. 

Glorious no?

Sunny is so excited to be taking walks with us again. He especially loves walking in the woods. Which is something Mattie adored. Prior to having Mattie, this would not be something I would do! Mattie pushed me beyond my comfort zone, and I turned out to grow to love being outdoors, surrounded by the peace and tranquility of nature. 

Mattie Miracle's Fall Item Drive is well underway! Things are starting to roll in. Please check out our wish list. These items stock our four snack & item carts at hospitals. These carts are considered lifesavers by families caring for children with cancer. All amounts of donated items are appreciated!

https://www.amazon.com/hz/wishlist/ls/1DP9G1GMHJ0C3?ref_=wl_share

Tuesday, October 25, 2022

Tuesday, October 25, 2022 -- Mattie died 682 weeks ago today. 

Tonight's picture was taken in October of 2006. Mattie was four and a half years old and that evening we went over to Zachary's house (Mattie's close preschool buddy) to go trick or treating. Mattie and I created his calico costume the year before, but he never got to where it because he was in the hospital with sepsis for Halloween 2005. A year later, we pulled out the same costume and it fit Mattie perfectly. He was a very cute cat and Mattie and Zachary were inseparable friends. 

Quote of the day: Grief knits two hearts in closer bonds than happiness ever can; and common sufferings are far stronger links than common joys. ~ Alphonse de Lamartine

I had to get my parents out the door this morning by 10am, in order to get to the hospital for my dad's physical therapy appointment. I have to allot an hour because my mom is in tow. Which means I have to get her to the hospital atrium, settled in a chair with a table, and I purchase her a hot tea while she is waiting. I feel great pressure on days where I have to leave the house before 11. Mainly because it is like herding cats. Despite my great efforts, my dad had to go to the bathroom right before we were going to leave, and that diverted my time line, as I had to clean the bathroom. Needless to say, I packed up all their bags, got their jackets on and got them in the car by 10:15. Only when I got to the hospital and wanted to show my dad's therapist a video of him doing one of his assigned exercises, did I realize, I left my phone at home. Since Mattie was diagnosed with cancer, the phone has become like my fifth appendage. I go no where without it. So the fact that I was away from home without my phone, was like a personal crisis. 

I immediately grabbed my dad's phone during his session and text messaged Peter. I was concerned Peter would want to reach me and it was important for him to know I was operating without a phone. In addition, given the huge responsibility that I travel around with, having my phone is not a luxury but a necessity. 

Turns out after the therapy session was over, I went down to the hospital atrium to collect my mom. When I did I noticed my phone on her table. My immediate thought was I accidently left it with her. NO! What happened was Peter got in the car and drove all the way to the hospital to drop off my phone, because he knows how crucial it is to my existence. That is a 30+ minute drive each way. I was grateful to have it because it turns out that the Foundation got some news today about funding of one of our research projects which required an immediate response. Thanks to Peter, I had my phone and could quickly respond. 

After therapy, I took my parents out to eat. Honestly I should record this scene because it is a thorough show. Every morning when I wake my dad up, his first question to me always is.... Are we going out to eat today? I hear this every single day! Since he can't remember from one minute to the next, I hear this question constantly. I am not sure what kind of habits my parents developed while in Los Angeles, but they are both conditioned to eat out. They really don't like eating at home, and yet the only way they can go out now is to have me managing the whole thing.  

Meanwhile we had to replace our washer and dryer today. The washer was apparently 19 years old and given that I am constantly doing laundry here, I can't be without a working machine. Thankfully Peter was home to manage all of this coordination today. When the old machines were moved, you can see the original color of the kitchen.... some sort of green! Seeing it today reminded me of why we painted the whole interior of the house. 

We are up and operational again. 

Later today, I walked Sunny with Peter. Along our journey, we saw a mama and her baby! A sighting Mattie always loved and appreciated. I can't see any animal pairs now without thinking of Mattie and how excited he would get. Mattie would always say.... they look just like us!

Monday, October 24, 2022

Monday, October 24, 2022

Tonight's picture was taken in October of 2006. Mattie was four and a half years old and doing what we loved doing in the fall..... attending fall festivals. This particular festival had an incredible display of pumpkins. I loved the big one behind us and I suggested to Mattie that we should take a photo by it. Peter snapped it and it happens to be one of my favorite photos. Mainly because Mattie was giving us a naturally big smile and truly was loving the moment. 

Quote of the day: Everyone must leave something behind when he dies, my grandfather said. A child or a book or a painting or a house or a wall built of a pair of shoes made. Or a garden planted. Something your hand touches some way so your soul has somewhere to go when you die, and when people look at that tree or that flower you planted, you’re there. ~ Ray Bradbury

There were two highlights to my day today. The first was talking to a couple who also lost an only child to osteosarcoma. They are based out to Boston and they were connected to us by one of the authors of our Psychosocial Standards of Care. I admire this couple, as they are focused on supporting families through the cancer process and are planning to do this in an unique way with the Foundation they are working on establishing in their son's memory. There are many noteworthy thoughts that came into my mind when chatting with this couple, but the first was something they said mid-call. They were discussing with us the fact that not everyone deals with child loss in the same way, and while we all are set on running a foundation to help others, not every bereaved person/family can or wants to do this. This couple is only one year into their grieving process and yet this comment is very astute, because they are right. Running a foundation and reliving our issues are NOT for everyone. Of course there is no right or wrong answer to dealing with child loss, but like this couple, Peter and I had to create and run Mattie's Foundation, because it is like our compass and lifeboat in our terrible life-long storm. 

The second highlight is later in the day, I suggested to Peter that we take Sunny for a walk. Sunny loved it and while outside and not caring for anyone, I can vent, walk, get fresh air, and take in the greenery. Because it was a lovely evening, we bumped into neighbors and had several nice chats. I can't do this with my parents. In fact, I can't have any sort of social life with them because at the end of the day the only way I can describe caregiving for aging parents it is a lot like caring for a toddler. The world is very "me" focused. No matter what the conversation, the topic in question always comes back to them. It is impossible to have a two way chat or meaningful dialogue. So in essence my parents are NO longer my parents and I am not sure I really blame age as much as I blame dementia. 

This morning was a riot. I told my mom I had two conference calls back to back. After which I would take her to CVS and then out for tea. Don't you know that this did not register with her. At 10:45am, my mom approached me and said she was ready to go out! I then had to explain to her again that I couldn't go out now because I had calls. Once my calls were over, I did take her out. Taking my mom shopping is challenging at best. She gets disoriented easily and freezes and she also has trouble balancing and walking. So trying to manage her and a shopping cart is a comedy show. I can't tell you how many strangers have offered to help me along the way because any rational person can see I am on overload. Once shopping was over, I took my mom for tea and snacks. She loved it and chatted and reminisced for two hours straight. Very one way chatting. I remember when I was in graduate school, hearing about the importance of reminiscent therapy with older adults. I do think it is a lot easier to do this from a professional standpoint, and not from the lens of a caregiver who is with the person 24/7. The sad part is I tried to tell my mom about one of my calls today, and she changed the subject back to her. So in many ways, my life is very isolating and physically and emotionally demanding. 

I had a floor lamp in my office for over a year. Recently my mom was complaining that she did not have enough light upstairs, so she took my floor lamp. Peter ordered a replacement lamp for me and I picked one that had a bug theme, as my Mattie was totally into bugs! Can you see these wonderful dragonflies? Also do you see the 1,000 paper cranes hanging from this light? 

These cranes were hand crafted by my friend Junko and her mom. Junko delivered these to us early on in Mattie's treatment process. These creations were a labor of love, with prayers said along the way during the folding and assembling process. These cranes hung from Mattie's IV pole with each hospital admission and then after he died, they hung in Mattie's bedroom. Now that we moved, the cranes now watch over me as I do Mattie's work in my office. I will never forget the sentiments behind this gift and the loving friendship behind them.  

Sunday, October 23, 2022

Sunday, October 23, 2022

Tonight's picture was taken in October of 2006. As you can see from my most recent blog posts, October was a busy fall festival month for us. Each weekend, we wanted to get Mattie out and about, both to expend energy but also to take in the world around him. By age four and a half, Mattie was more eager to try slides, climbing, and other things. Whereas when he was much younger, he had great fear around being around lots of people and forget about hearing any loud noises. By the time this photo was taken, we had jumped through many hurdles with Mattie, and he was really thriving and shining. 

Quote of the day: Grief is like a moving river, it's always changing. I would say in some ways it just gets worse. It's just that the more time that passes, the more you miss someone. ~ Michelle Williams

It was another winner of a day on the Farm. Today wasn't as positive of a day on Ritalin as yesterday. I have to level set my expectations, as Saturday seemed like we may potentially be turning a corner with my dad. I would say my dad was back to his chronically exhausted state today. After breakfast, my dad was complaining that I was asking him to walk in the house for 15 minutes. He implied... how would I like to have to do all that? So I tried to give him perspective of what I accomplished by this same time today. I laid it out for him, just like I am doing below:

• I got up. 
• Changed my bed linens and started the washing machine.
• Took a shower and got dressed.
• Came down stairs and made breakfast for us.
• Vacuumed the first floor of the house.
• Folded the laundry I started earlier in the morning.
• Fully cleaned out the cat's litter box and put in new litter.
• Threw out the garbage.
• Woke my dad up.
• Made their bed.
• Got him showered, dressed, and downstairs for breakfast.
• Started the second load of laundry.
• Cleaned up breakfast dishes.
• Did brain games with my dad.
• Oversaw his 15 minutes of walking.
• Then did his PT exercises.

This bulleted list was just from the time I woke up until about 11am. Honestly that alone would be a full day of chores. But then add onto it toileting my dad, which means cleaning the bathroom after every use, managing their other needs and demands and then taking them out to dinner, and I am DONE!

The highlight of my day was walking with Peter and Sunny. I made a commitment to get out of the house without my parent's in tow this weekend. Even if it was just for an hour. While walking through the woods, we came upon three deer. Here was one. Sunny was thrilled. 

Can you see this one? See the two thin tree trunks on the right? The deer is right next to them, hiding in a bush. 

The third deer. 

Along our journey today we kept finding piles of fur. It looked fluffy. At first we thought it was dog fur, but since it was all over the woods and in large quantities, I deduced it had to be from deer. I was correct, as I am learning they molt throughout the year. As a city girl, I am not up to speed on such facts. But I am learning quickly.