Saturday, October 15, 2022

Saturday, October 15, 2022

Tonight's picture was taken in October of 2004. Mattie was two and a half years old and Mattie was Winnie the Pooh that Halloween. I remember going to Target with Mattie sitting in the cart and picking out his costume together. Given Mattie's distaste for many different materials, I had to stick with something soft and not scratchy. We gravitated to Pooh. That Halloween, Peter's brother and family were still living in Washington, DC. So we went to their neighborhood and trick or treated together. This was Mattie's first experience with Trick or Treating and he had mixed feelings about it. Of course Mattie did not like candy, so there really wasn't a motivator that year. As he got older, he enjoyed trick or treating with his friends and experiencing the social component of going house to house. 

Quote of the day: My brother was a great favorite with everybody, and his death cast a gloom upon the whole neighborhood. ~ Buffalo Bill

I couldn't get out of bed this morning. I felt exhausted. By 7:30am, I pulled myself out and got it together. However, Peter let me know that he couldn't find Indie. Typically Indie pops up as soon as Peter gets up in the morning. Indie is a big eater and by the time I get up, she has usually devoured breakfast. Turns out Indie was in my closet, sitting in a cat pouch, hiding. That wasn't a good sign. She made no movement and wasn't interested in coming out to get food. Clearly Indie wasn't feeling well. I got down on the floor and sat next to her for a while and petted her. Eventually after I came downstairs to start breakfast, she showed up. 

As you can see, Indie made herself at home on our kitchen stool. She appears to be back to normal, but I admit that I am not spending as much time with Indie and Sunny as I once did. 

After breakfast was cleaned up and my dad completed his walking routine, I put him in his recliner and my mom and I went to the farmer's market. It fascinates me how my dad has no interest in any activity other than eating. He once LOVED to go grocery shopping and picking out food. Not any more. His energy level continues to decline rapidly and I am hoping with starting Ritalin this week that we can stabilize him enough, so that he can participate in some aspect of life. 

Our farmer's market features a local musician or musical group each week. This week the artist performing reminded me of James Taylor. He had the same quality/tone of voice, so much so that I stopped to take notice. So I went over to talk with him and we played name that tune together. In any case he is coming back next week and I already told him what songs I want to hear. I asked him if he knew "Our Town" by James Taylor and he wasn't familiar with it. I told him to look it up. I will never forget hearing that song with Mattie for the first time. The song was featured in Mattie's favorite movie, Lightning McQueen. It is a very touching song, and even playing the name that tune game reminded me of our time in the hospital, when Mattie used to play this same game with Jerry and Nancy (the music volunteer duo). 

While in the car driving back from the farmer's market, my mom was reflecting upon her career and what she was able to accomplish. Naturally I am proud of her accomplishments and happy for her, but I am not in the best place emotionally. I could have easily lashed out but I kept my thoughts and feelings to myself. In so many ways I feel like my life has thrown me one curve ball after the other. Whatever I wanted to accomplish has been diverted with caregiving. First trying to face childhood cancer and Mattie's death and now full-time caregiving for my parents. Certainly that is a choice I guess, but not something I was expecting to happen. I know that no one could have raised and cared for Mattie like me, nor can I turf off my parent's care to someone else. I did that in Los Angeles, and clearly that did not turn out well. Both of my parent's health failed and the caregivers never alerted me. At the end of the day I will never look back saying.... I should have, but I do know that taking on these caregiver roles have sacrificed other opportunities for me. 

Friday, October 14, 2022

Friday, October 14, 2022

Tonight's picture was taken in October of 2004. Mattie was two and a half years old. His preschool was having a Halloween party. This was the preschool that Mattie was thrown out of two months into the school year. Mattie was a sensitive fellow and this Montessori program was not a good fit. Keep in mind that the preschool director badgered me practically everyday about Mattie's behavior and she wanted permission to put soap in Mattie's mouth. That was her suggested methodology to prevent him from biting other children. I am sure you can guess that I never gave approval to move forward with her antiquated methodology, and instead cited research about the harm of such forms of corporal punishment. 

Quote of the day: To lose a son under those circumstances - a violent death like my son went through, it just puts a burden on your heart. ~ Brian Jones

This morning, I woke up earlier than usual because I had to get my dad up, showered, and dressed in time for me to leave and take my mom into the city to get her hair done. It was a gloriously sunny day and when I dropped her off, I literally parked the car for 90 minutes and started returning phone calls. One was to CVS, as I take an infusion of a drug for osteoporosis. They processed the order and wanted me to pay $1,000 as a co-pay. I dealt with this same issue in April, but at that point got a Prolia debit card from the company. Thereby making Prolia pay this high co-pay. I am sure they have an incentive to pay for my drug, as they probably need to increase their sample of participants. I would love NOT to need Prolia, but all other alternatives don't work for me. Even in my down moments, I can't get a break. I also called about my mom's next arterial testing next week and I am eager to get this over with so I know exactly what I am dealing with. 

When it was time to pick my mom up, I pulled up close to where the salon was. Since it is a busy street, I remained in the car, as she was entering from the side walk. As she went to open the car door, she almost fell backward onto the pavement. My mom is not steady on her feet and is an accident waiting to happen. I literally flew out of the car to help her and made sure she got in safely. It is very clear to me that I am solidly caregiving for two, NOT one. Driving to the salon takes me 40 minutes, then I waited 90+ minutes in the car, and then drove back home, which was another 40 minutes. 

When I got home, this was the highlight of my day. Sunny had just gotten groomed and Peter, me, and Sunny all sat outside in the backyard for about 15 minutes. It reminded me of how things used to be, but now I am constantly juggling, distracted, and stressed. It makes it impossible to be good at anything including all my relationships. 

After this brief moment, I went back to chores, and then picked my dad up from his memory care center and drove my parents to Rockville, MD, to dine at a restaurant we visit weekly. My drive to Rockville was 40 minutes and my commute home was over an hour (thanks to DC traffic). So if you tabulate up my time in the car, it is significant and tiring. 

Meanwhile this is home on the range! Every night, we are sure to have some sort of sighting in our yard. 

It is no wonder Sunny loves being outside in the evening. He is on the prowl and constantly looking for fox and deer! 

Thursday, October 13, 2022

Thursday, October 13, 2022

Tonight's picture was taken in October of 2004. Mattie was two and half years old and that day we were invited by my students to a Halloween event at the university. Mattie was Winnie the Pooh that year for Halloween and when he arrived my students made a big fuss over him. They gave him a goodie bag and invited him to pick out some books to take home. Mattie selected books featuring Franklin the turtle and Little Bear. Both of these characters were animated TV shows that he watched on a regular basis. Mattie loved sitting and listening to a good story and he especially loved following along through the illustrations. 

Quote of the day: Unable are the loved to die. For love is immortality. ~ Emily Dickinson

It was another crazy day on the farm. At around 6:30am, I heard a motor running outside my bedroom window. Turns out my neighbor was having work done on her house, but really at that hour??? There is no peace for me and certainly no sleep. 

My parents saw the cardiologist today and after that my dad had physical therapy at the hospital. Which meant I spent the majority of the day driving around and shuttling them from one place to another. That may sound easy, but they both need a lot of assistance getting in and out of the car, then I have to allot time to use the bathroom, and meet other needs that arise. 

My mom entered the cardiology appointment in a very anxious state. Since seeing the podiatrist on Tuesday, she concluded that she would need surgery because something is very wrong with her. I tried to tell her not to jump to conclusions, but what do I know?! The cardiologist calmed her down and told her there are many reasons for a weakened pulse in the feet, and it doesn't always mean there is an artery blockage, which would require a stent. In any case, she is going for further testing next week to determine next steps. My parents love this doctor, as he is Italian, and he also has great sensitivity when working with older adults. 

By the time the cardiology appointment was over, my dad looked like he was ready to go to bed. Yet that wasn't an option. I had to get him back in the car to head to his physical therapy appointment. I had about an hour to kill between these two appointments, so when I got to the hospital, I got my parents a snack in the atrium. Since coming off of the steroid, my dad's energy level is worse than ever.

My dad needed the steroids because he had a bad allergic reaction to a bug bite. However, my dad became a different person on steroids. He was more lively, engaged with the world, talkative, and had the energy to do his exercise routine. When his 8 day supply of the steroids ended, with it went his energy and everything else. In fact, I would say that his energy level is worse than what it was prior to taking the steroids. I thought that was just my imagination, but the cardiologist confirmed that this can happen in some patients which is why long term steroid usage can be dangerous. Needless to say, both my dad's internist and the cardiologist feel since he responded so positively to steroids, that we should try Ritalin. Yes Ritalin is a drug typically used for ADHD, but in seniors with dementia, the stimulant is known to help with exhaustion and apathy. I am hoping we will be able to start it next week because right now I feel like I am dragging my dad around and he has no interest at all in anything other than eating and sleeping. To me this is no quality of life. 

Wednesday, October 12, 2022

Wednesday, October 12, 2022

Tonight's picture was taken in October of 2004. Mattie was two and a half years old and he was at a Fall Festival with us. We absolutely loved getting outside on the weekends and these festivals truly got Mattie running around, exploring, and celebrating the fun of fall. 

Quote of the day: What an awful thing then, being there in our house together with our daughter gone, trying to be equal to so many sudden orders of sorrow, any one of which alone would have wrenched us from our fragile orbits around each other. ~ Paul Harding

I did my usual routine today and then Peter took my dad to his memory care program. This enabled me to have several hours to prepare for the National Cancer Institute's webinar that I was scheduled to participate in from 1 to 3pm. 

Honestly I am not sure why putting together slides, prepping and talking was so so difficult. I chalk it up to be physically and mentally exhausted. I was so overwhelmed that this morning, I wrote out talking points for each slide. As I feared I would draw a blank and given there was a time constraint to present in twenty minutes, I had to be succinct. All I know is it took whatever inner resources I had to do this, as I find it takes a lot out of me to appear normal and professional. My usual state right now is scattered, strung out, and constantly multi-tasking. 

The title of today's overall webinar was "Caregiver and Clinician Conversations about Increasing Physical Activity in Pediatric Cancer Patients." The session was recorded and hopefully I can share it soon. This photo shows you my portion of the presentation. 

Typically I present on psychosocial needs and care, so physical activity was a bit out of my comfort zone. Until I of course reflected on Mattie's journey. Mattie always shows me the way forward. In the presentation I made the link and connection between physical activity and positive mental health benefits for children with cancer.  

I put together 25 slides for today's presentation, here are six of the ones I developed for this presentation to help illustrate the importance of physical activity and how this activity changes along a child's journey with cancer. 

Physical activity and mental health are intertwined. When preparing for this talk, I turned to my lived experiences with Mattie to help guide my thinking. 

When you look at this slide, what do you see?

• At baseline, Mattie was active in every sense of the word (running, jumping biking, riding a horse), he was the definition of a healthy and a typically developing child

• The assumption was this was going to continue, this would be Mattie’s life. He would have a long healthy and productive future

• We never expected a cancer diagnosis, and of course that changed everything.

This slide shows the dramatic transformation. Mattie went from being active to being wheelchair bound, never walking independently again. Mattie also could barely stand and had a limited range of motion with his arms. 

• Imagine how frustrating this had to be for a once active six-year-old. 

• Yet no one prepared us for what was happening. Sure, there were medical protocols that provided a standard treatment path, but there wasn’t a roadmap for the psychosocial impact and the impact on Mattie’s physical abilities. 

• We really did not know what Mattie’s rehabilitation plan was, whether he would be able to walk again, toilet himself again, or dress himself. 

• There needed to be a plan, guidance during this tumultuous transformation to help re-engage Mattie’s mind, body, and spirit.  

The primary job of a child is to play. Play is very physical. Pre-cancer Mattie played a certain way. But children and families need help understanding that play and physical activities may look different after a cancer diagnosis. 

• Movement and physical abilities are affected but they still exist, and the child, family, and the healthcare team need to evolve and creatively find new ways forward. 

• Therefore, this is the perfect time to instill hope. This is done by expanding, modifying the traditional definition of physical activity in order to accommodate the changing needs and abilities of the child. 

The next three slides show how we modified Mattie’s physicality. 

• We tailored activities to meet Mattie’s abilities. 

• These creative activities helped Mattie gain control, increase his self-efficacy and self-esteem

• They challenged him cognitively and also provided him a social outlet. 

Legos are not just a toy. In fact, through building with Lego bricks, he was actually building his social, emotional, and physical strength. 

• Cancer caused Mattie to turn inwards. Yet his Lego models helped him come out of his shell, interact with the world around him, and move his body at the same time. 

Even Magic, and learning magic tricks provided physical activity and mental challenges. Challenges which produced positive changes in Mattie’s mood and anxiety levels. 

• Not everyone can master the skills of hand and eye coordination needed to perform magic tricks. 

• Having developed these abilities empowered Mattie, and enabled him to see himself in a whole new light. Not as a child with cancer, but a child with special skills. 

After the webinar was over, my dad came back from his memory care center and I had to get both of my parents in the car and over to CVS for their COVID booster. Shuttling them from one place to another is getting much harder, as each of them requires attention and support. After the vaccine was over, my mom wanted to go to the bank and then I took them out of an early dinner. It is now 9pm, and I feel like I ran a marathon today. 

Tuesday, October 11, 2022

Tuesday, October 11, 2022 -- Mattie died 680 weeks ago today.

Tonight's picture was taken in October of 2004. Mattie was two and half years old and that day his preschool went on a day trip to a local farm. The farm had a barn filled with hay. The kids were running around and having a ball. Mattie was hesitant by first, but he tried participating and at that age really wanted me to tag along and be his play buddy. I am so glad that I never missed the opportunity to be right by Mattie's side, to take part in school trips and functions, and to be a full time mom. We packed a lot into seven years together, but of course it just wasn't enough time. 

Quote of the day: Grieving is intense and it is non-stop intense. Even if things are quiet, and you’re sitting there in your chair, kind of staring off into space, inside, the intensity is raging. ~ Lori Ennis

This morning, both of my parents had a podiatry appointment. My dad sees this doctor every 9 weeks to get his toe nails cut and have a foot exam. He was a diabetic all his adult life, which has consequences on the feet. Ironically in 2020, when he got sick with urinary sepsis and an impacted colon, he lost 50 pounds. As a result he was NO LONGER a diabetic.

For the last two months my mom has been complaining of heel pain. I felt her heel, and I assumed it was a callous. However, the podiatrist feels that isn't the cause of her problems. He did a simple test to screen for peripheral artery disease (PAD) by checking for the pulses in her feet. In each foot, there should be two pulses that are easily detected by a trained physician. This test is performed to determine whether the blood flow to your feet is normal. It turns out he can't feel any pulse and scored her 0 out of 4 on the screening. 

Peripheral artery disease (PAD) is a buildup of cholesterol and plaque in the arteries that lead to your extremities. PAD can cause discomfort in your legs and feet, and limit your walking and activities. Severe PAD can progress to loss of limb. 

The next step in screening is the ankle brachial index, which uses blood pressure cuffs on her arm and leg in combination with a Doppler probe, which uses an ultrasound wave, to help hear the pulse in the foot. Using this technology, can help to better assess the blood flow to the area. For most people, blood pressure in the foot should be similar to the blood pressure in the arm. A drop of as little as 10 percent in that pressure can be an indication of peripheral artery disease.

Needless to say my mom was VERY concerned by this news and began to panic. As she panics, I become very calm and almost dispassionate about the issue, in order to logically think about how we are going to attack and address the issue. We went home immediately and I contacted her cardiologist. We are seeing him on Thursday and in the mean time, I booked her next week to have further arterial assessments of her legs. Considering my mom had an 100% blockage of a coronary artery in 2018, it is possible that this is a bigger problem than it looks. While my mom was freaking out, my dad was in his own world talking about how nice it was to get his nails cut and what a wonderfully sunny day it was! He has NO ability to absorb what is going on around him, despite being in the exam room with all of us. 

All I can say is..... there is no break for me. My mom has multiple issues going on right now: 1) her left wrist is swollen and has limited functioning of her hand (which requires an evaluation by a hand surgeon), 2) she has difficulty walking and trouble balancing (I can't wait until we see the neurologist and we get some sort of direction and explanation for what's going on), and 3) now she has no pulse in the feet. This alone would be more than enough to balance, but I also care for my dad. 

My dad completed his 8 day course of steroids yesterday for an allergic reaction to a bug bite. He was a different person on steroids. More lively, engaged, talkative, and physically active. Now that the steroids are done, he has returned to his exhausted, apathetic, and dis-engaged self. Today he was totally out of it and despite telling him what day it was and what we were doing, he was dazed and confused. I have all sorts of devices around him to cue him to the day, from electronic calendars to a white board with the day's schedule! None of it works, and don't get me started on this journal the speech therapist has us doing. I have maintained this journal since July! However, the one primarily writing in it is ME not my dad. 

Meanwhile, tomorrow I am presenting in a National Cancer Institute webinar. I frankly don't know if I am coming or going and my hope is that I can find an hour to myself now to prep! Wish me luck.  

Monday, October 10, 2022

Monday, October 10, 2022

Tonight's picture was taken in October of 2004. Mattie was two and a half years old and by that time, it was his second year attending fall festivals. That year he ventured down the big hay slides. He was cautious about it, but agreed to try it sitting on Peter's lap. Mattie was much more adventuresome than me, because at his age I most definitely wouldn't have done this. Fortunately Peter was a good role model for Mattie and never pushed Mattie. Yet Mattie was willing to try things with Peter's support and in the process they both had many fun adventures together. 

Quote of the day: We do not ‘get over’ a death. We learn to carry the grief and integrate the loss in our lives. In our hearts, we carry those who have died. We grieve and we love. We remember. ~ Nathalie Himmelrich

Yesterday we went to a restaurant in Rockville, MD. We have been dining at this restaurant since May of 2022. Now occasionally, but try once or twice a week. 

Peter snapped this photo of us in front of a VERY large pumpkin. 

We were having a very pleasant meal and trying to unwind. Peter snapped a photo of us! But of course I am not allowed a minute of peace. That minute came to a screeching halt. 

I took my dad to the bathroom at the restaurant, as I do on each visit. While in the bathroom, I noticed one other woman with us. Shortly after she left the restroom, a hostess walked in. She came over to me and told me that I was making guests uncomfortable by having my dad in the women's room. That we had to leave and she escorted us out. In addition, she said in the future, I would need to alert the front desk first before taking my dad to the bathroom. I was LIVID. So livid that I got all the restaurant managers involved and I came home last night and wrote a formal letter of complaint. You can read it below. My life is complicated enough and I honestly feel I can never get a break. Yesterday stressed me out so much that I couldn't sleep all night. It is a feeling of being utterly trapped wherever I am. 

My letter to the restaurant is below -- I removed the name of the restaurant for the purposes of the blog.

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I appreciate the opportunity to formally write and share my unpleasant and inappropriate experience today at your restaurant. As you know, my family has been coming to your restaurant since your sister restaurant closed in May of 2022. We are very fond of Dawn and you, and this special connection is what motivates us to make the journey from Oakton, VA each week to Rockville, MD. 

In December of 2021, I moved my parents from Los Angeles to my home in Oakton, VA. I am their full-time caregiver. My dad has considerable physical and cognitive disabilities and unfortunately, he is unable to do most activities independently. I am always hesitant to take my parents out to eat, given the extensive amount of support they need. Which is why I have chosen to take them ONLY to your restaurants. This has been a very deliberate decision because of the outstanding and personal service we receive, the high-quality food, and the accessibility of your restaurants. 

While at your restaurant today, my dad needed to use the restroom. Like in all my previous visits to your restaurant, I took my dad with me to the women’s room. Since I am his caregiver and he needs assistance with toileting, I have elected to take him to the women’s room because I would not feel comfortable going into the men’s room with him. Your restaurant does not have a family restroom, so I have had to make the best possible choice for my family. I have taken my dad to the women’s room since May of 2022 without any issue. 

I noticed one other woman with us in the restroom today. Shortly after she left, your hostess, Shannon, entered the restroom and came over to talk with me as I was helping my dad wash his hands. She proceeded to tell me that I was making other restaurant guests uncomfortable by having my dad in the restroom and therefore moving forward if he needed to use the restroom, I would have to alert the front desk first before proceeding into the women’s room. Honestly, I was stunned that she was having this conversation with me in the middle of the restroom and then proceeded to escort us out. I told her in today’s day in age, I was surprised we were having such a conversation, but overall, I felt like I was being reprimanded and treated like a child. 

I immediately came back to our table and told Dawn about my experience with Shannon. I told Dawn that I wanted to speak with you, and I appreciate you coming over, listening to my experience with Shannon, and pro-actively addressing the problem, as well as comping our meal. I am very impressed with your leadership style, and I want you to know that your efforts do not go unnoticed. You clearly value your customers, take the time to get to know us, and you are committed to making our dining experience an excellent one. 

That said, I am very concerned with how your restaurant plans to address this issue moving forward and I want to hear directly from your corporate office. Family caregivers are the unsung heroes in our country, and we face daily challenges caring for our loved ones. I would hope that your restaurant values people with disabilities and their caregivers and would stand up for our rights to have access to restrooms without repercussions. My understanding is that Shannon is a hostess, not a manager. Therefore, if the restaurant wants to discuss an issue with me, I expect to be talking to a manager not a hostess. However, it is clear that Shannon pushes the boundaries of her role and I find her behavior disrespectful as a customer and it appears she has little regard for the chain of command at your restaurant.

We dine at your restaurant group weekly, and today’s experience left me wondering whether we can continue to return to your restaurant. After interacting with Shannon, I felt as if she was telling me that your restaurant does not welcome people with disabilities and their caregivers. Or perhaps people with disabilities and their caregivers can dine here, but just not use the restrooms. I am quite certain that how she approached me, her tone, and her way of thinking would not comply or be tolerated within the American with Disabilities Act (ADA). 

I take my role as a caregiver seriously and I feel it is vital to write to you to prevent this from happening to any other family caregiver in the future. At the very least, there needs to be a corporate policy about access to restrooms for caregivers of people with disabilities and this needs to be applied throughout the restaurant group. I would like a response from your restaurant's corporate office regarding my letter and specifically would like to hear about your policies in place to support people with disabilities and their caregivers as well as how these policies will be enforced. 

Thank you for your leadership, professionalism, and concern for me and my family. We appreciate your time and efforts regarding this matter. 

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After doing all my extensive morning chores, Peter and I took Sunny for a walk. While in the woods, I heard a big woodpecker. Can you can see the tuft of red on his head?  

Walking in the woods! Now that the weather is getting colder, my parents are less interested in going out. Other than to eat of course. This gives me more time to plan my day, which I hope will include more walks like this in the future!

Sunday, October 9, 2022

Sunday, October 9, 2022

Tonight's picture was taken in October of 2004. Mattie was two and half years old and that weekend we took him to a fall festival. We are pictured on a hay ride together, and we got a bag of popcorn as a snack. We did all sorts of fun adventures when Mattie was in our lives. Things I would never have done if he wasn't a part of my life. He left me with amazing memories and when it comes to fall, I remember the pumpkins, the festivals, the slides, and getting out and about in the crisp harvest air. 

Quote of the day: Death is tough for the people left behind on earth. ~ Prateeksha Malik

Peter's parents left this morning. We worked hard to make it a fun and memorable trip for both sets of parents. I am on my fourth load of laundry for the day. However, because it is a beautiful day out, I told Peter we have to stop working and go take Sunny for a walk. 

I haven't walked Sunny in months! Sunny was beyond thrilled. My parents were both napping, so this was the perfect time to get out on our own. 

One of our neighbors sets up this display for Halloween. If you look at the tombstones, they read:

Chris P. Bacon (play on words for crispy bacon)

RIP MT Grave (which is RIP Empty Grave)

We bought lots of little "pie pumpkins" yesterday and we have lined them on both retaining walls in our front yard. They really perk up the front for the fall.