Saturday, August 13, 2022

Saturday, August 13, 2022

Tonight's picture was taken in August of 2008. It was labor day weekend and our niece and nephews came into town to visit with Mattie. Also that day, several of Peter's friends from his Arthur Andersen days came to visit and brought gifts. Our room was the size of a shoe box, but we all crammed in and people from all of our community truly tried to support us and Mattie. The energy from Team Mattie will never be forgotten. 

Quote of the day: Love and kindness are never wasted. They always make a difference. They bless the one who receives them, and they bless you, the giver. ~ Barbara De Angelis 

Since my parents have moved in with us, I have eaten out much more than I normally do. When it was just Peter and me, perhaps we took out food or ate out once or twice a week. But for the most part I cooked seven days a week. Now going out to eat serves not just a food purpose, but it provides structure, routine, and socialization to our very isolated days. 

Pictured with me is Cheryl. Cheryl has become a part of our weekly routine and in the process we have become friends. This photo was taken the day before my birthday. 

Tomorrow will be my parent's 62nd wedding anniversary. Since it falls on a Sunday, that means we will be seeing Cheryl. As we eat at her restaurant every Sunday. Earlier in the week, I text messaged Cheryl and told her about my parent's anniversary and how Peter and I would like to get flowers and a balloon for the dinner table. 

So I ordered the flower arrangement and balloon this week and used a florist near where Cheryl lives. Cheryl and her son, Corey, picked up the arrangement today and Cheryl will have it on the table for us tomorrow when we arrive. I wanted it to be a surprise for my parents! I should mention that Cheryl volunteered to pick up the flowers, care for them, and bring them to the restaurant. I did not ask her! This speaks to the kind person she is and though I run around town taking my parents to certain restaurants, I do this because of the caliber of people working with us. They have become part of our social network, which to me is crucial in surviving as a caregiver. 

Now you could say..... is that needed or worth it? If it were just my dad, I would say NO. He won't remember the flowers or the meal. But I think my mom still appreciates these niceties and for as long as one of them does, I will do it. 

Friday, August 12, 2022

Friday, August 12, 2022

Tonight's picture was taken in August of 2008. It was our first week in the hospital to receive chemotherapy. Needless to say we were all overwhelmed, anxious, and on edge. That day, Mattie's child life specialist, Linda, set up a big painting area in the hospital hallway. On that paper, Mattie created a sun and the earth. That week was the first and only week Mattie wore hospital attire. Thereafter, Mattie elected to wear pajamas throughout the day. 

The sun was a symbol that Mattie integrated into all of his art. Not with any prompting from me, but by choice. Which was why the SUN seemed like the perfect symbol for Mattie's Foundation. 

Quote of the day: If there's one thing I've learned in my years on this planet, it's that the happiest and most fulfilled people are those who devoted themselves to something bigger and more profound than merely their own self-interest. ~ John Glenn

It is 8:30pm and I have been running around all day. I got up at 6am, so I could get myself showered, dressed, and breakfast made. I then woke my dad up at 8am, got him washed, dressed, and downstairs. Peter took my dad to his memory care center and I drove my mom into the city to go to the salon for her hair and nails. 

In all reality, I should take my mom somewhere closer to the house, but I have been going to this particular salon in Washington, DC for years. Also every time I go to this salon, I pass my old home and neighborhood. When I drive my old streets and see where I used to live it is almost painful. Painful for multiple reasons. The first is that the city has changed dramatically, starting with homeless encampments everywhere and then of course the simple fact that I raised Mattie in our old home. To me a part of him will always be there! As I was driving through the streets of Georgetown today, I also reflected on my countless walks with Sunny. When I got Sunny in 2016, he used to get three walks a day. Now given what I am balancing, I am lucky if Sunny gets one or two walks a week. It is depressing. 

I think the pace I am keeping could dwindle even the strongest of spirits. I have no time to myself, I balance one crisis after the other, and am tired of being chauffer, chef, valet, laundromat, coordinator of activities, nurse, maid, and the list goes on. I haven't had a break from this routine for 9 months. I have no idea what having a meal in peace looks like, because with my dad he eats too fast and either starts hiccupping, choking, or has to run to the bathroom. If that wasn't bad enough, no information or conversation is retained for more than five minutes. So my dad has a habit of asking the same question, over and over. OVER AND OVER. 

My mom's latest request is she wants to smell ocean air. I get it, I would like a change in routine and scenery too. But neither of my parent's have insight into their own issues. I assure you packing up this show and taking it on the road would be challenging. Could I do it, probably, but frankly she isn't thinking through what traveling for them would look like now. She thinks she can walk on the beach, but unfortunately she has difficulty walking on pavement. Needless to say, I walk a fine line between providing hope and sharing the reality for their safety. 

Later today, I drove my parents to Rockville, Maryland. However, the drive (in our great DC traffic) took me about an hour each way. So when I say I was in the car all day, I am not kidding. We have dinner each Friday at the same place, because we love Dawn, the server we have gotten to know. She takes excellent care of us and it great stimulation for my dad! Several months ago, I started creating report cards for Dawn. I design one each time we go there. The report cards ask her questions and it was my hope that my dad would love hearing the questions and answers. I even bring stickers to rate her response. In addition, I bring a bag of coins with me. Each silly comment my dad says to Dawn (e.g. IS THE FOOD FRESH?), she gets rewarded with a coin. Today alone she earned 27 cents! 

Thursday, August 11, 2022

Thursday, August 11, 2022

Tonight's picture was taken in August of 2008. Mattie was in his first month of treatment and was still able to run around and play with friends. Pictured with Mattie was his close buddy, Alex, from preschool. In the background was our neighbor JP and his dog, JJ. Mattie practically grew up with JJ. The boys were running in our commons space, a space we loved for over twenty years. There were many firsts in this space... walking, bicycle riding, driving "speedy red" and learning to fly a kite.

Quote of the day: Instead of worrying about what you cannot control, shift your energy to what you can create. ~ Roy T. Bennet

After my usual morning routine, I drove my parents to Arlington, VA so my dad and I could go to his speech therapy appointment. As of today, my dad has had four speech therapy sessions. The main focus has been to develop a daily log book for him so he can answer the SAME basic questions every day. Keeping it standardized helps him track the information from day to day. Of course the purpose of the log book is to help him remember what happens in any given day. My dad's memory is very, very compromised. Meaning something can happen one minute and about 2-5 minutes later he has NO MEMORY that anything happened. When I mean something, I am talking about for example....... going to the bathroom, watching a severe thunderstorm, or talking to someone. Within minutes, all these thing evaporate from his memory. Therefore, this makes note taking close to impossible. 

I have become very frustrated over this daily log book, as it feels like I am the one doing the work. My dad can't recall anything, and I land up telling him what to write in the log. Today, I explained all of this to the therapist. As a therapist myself, I know we always have to ask ourselves.... why am I doing this? Who does it benefit? Me or the person I am helping? In my dad's case, I have wanted him to remember things, to be able to journal about them, but stepping back, I ask myself.... is this important to him? Does he like using the daily log book? Does he want to refer to it? The clear and unfortunate answers are NO! Which I need to accept!

I asked the therapist if the challenges I am having with the log book are specific to my dad or whether others with the similar stage of dementia face the same problems. I did mention to her that my dad wasn't a writer pre-dementia. Therefore asking him to log his day now is a total foreign concept to him. Not one he enjoys or sees a purpose for! So I truly believe personality has a lot to do with this on top of his moderate to late stage dementia. Together, it makes it a horrible combination. The therapist basically said the same thing I just reflected on. Needless to say, next week will be my dad's last speech therapy session. As she feels there isn't much more that can be done, other than what I am currently doing. Honestly this wasn't surprising to hear, but it did confirm to me that I am indeed doing everything physically possible to keep my dad's mind engaged. 

After the therapy session, I got my parents back into the car and took them out to lunch. When we got out of the car to walk into the restaurant, my mom was struggling. She looked uncoordinated, teetering, and I wasn't sure who to spot first, my dad or her. They walk at different paces and getting my dad to stop and focus on something other than himself is close to impossible. Thankfully the general manager came outside and helped me, as he saw the issues I was balancing. The one thing about all of this is I have gotten to know the management and many of the servers in the restaurants we visit weekly. These people have become part of our week circle of helpers and I am grateful to have them to converse with and to break up my long days. 

Wednesday, August 10, 2022

Wednesday, August 10, 2022

Tonight's picture was taken in August of 2008. It was actually the first week Mattie was admitted to the hospital for treatment. It was a new and scary moment in time, that will never be forgotten. In fact, when we were first admitted to the hospital, we were put in a room that had NO shower. I lasted in that room one night. Then complained and we were transferred the next day to Room 10. Ironically we began chemotherapy in room 10 and Mattie died in room 10, 14 months later. 

That afternoon, Linda (Mattie's child life specialist) set up an activity in the PICU hallway. She laid out paper on the floor and in no time, we were painting a huge mural. I am not sure where we would have been without Linda and Mattie's art therapists. They provided creative distractions that in the process these activities helped us feel "normal" and forget our fears for just a few minutes. 

Quote of the day: The things you do for yourself are gone when you are gone, but the things you do for others remain as your legacy. ~ Kalu Ndukwe Kalu

I couldn't sleep last night. I think the stress and anxiety of my daily routine got to me. In addition, Sunny was up with diarrhea until 1am. I think by 3am, I finally fell asleep, just to get up at 6:30am. Needless to say, I am TIRED. 

After getting my dad up, showered, dressed, and completed breakfast, he was off to his memory care center. With him in a safe place, I drove my mom to Rockville, MD (about a 45 minute drive each way) for a transcranial sonogram. When I moved my parents here, the focus was on my dad. I was aware that my mom was having issues, but I couldn't tease out whether this was from exhaustion and caregiving, or whether she too had an issue going on. I feel quite certain she has a neurological issue and now she are undergoing testing to determine what it is. 

Both my mom's primary care doctor and our initial neurology visit indicated Parkinson disease (PD). PD is a slowly progressive disorder that affects movement, muscle control, and balance. Part of the disease process develops as cells are destroyed in certain parts of the brain stem, particularly the crescent-shaped cell mass known as the substantia nigra.

Today's transcranial sonography includes the Substantia Nigra, I am hoping this will be useful for the differential diagnosis of Parkinson's Disease versus another neurological condition that has parkinsonian symptoms. It never dawned on me that my mom would be freaking out over a sonogram. I don't mean waiting for the results, I mean having to endure the actual exam. I say this because to me a sonogram is the least noxious of testing one can take. 

Fortunately I advocated to go back into the testing room with her and the tech, and the tech allowed me in. When my mom is stressed out, she can get snappy and initially was giving the tech a very hard time. I stepped in and served as interference. Thankfully after about 35 minutes the test was over and hopefully we will get results in a few days. 

Here is the procedure for the test..............

• The test was performed by a specially trained technologist and will be interpreted by a neurologist.
• My mom was lying on a padded examine table 
• A small amount of water-soluble gel was applied to her skin. Specifically it was applied to the back of the neck, above the cheek bone, and over the eyelid. These are the blood vessel sites that supply the brain. The gel did not harm her skin or stain her clothes. Nonetheless she complained about it all 40 minutes.
• A small microphone-looking-like device called a transducer was held in place on the exam area. The transducer sent high-frequency sound waves through the brain and captured the returning blood flow information. The ultrasound signal was turned into graphs or color pictures that were shown on the display screen.

After the testing, I thought my mom would want to walk the shopping mall and go to have lunch. I was wrong on both counts. That was enlightening to me, as her energy level is not the same (as even a year ago) and every activity other than the usually structured ones produces anxiety. 

Instead, I took her out for frozen yogurt, which she seemed to like. When we got home, Peter had just picked up my dad from the memory center. So I went from one activity to the next. Before I even let my dad get comfortable, I had him walk ten minutes in the house. I am determined for him to meet his 1,000 daily step count. So far I have been successful for ten days! I celebrate the small wins around here.

Meanwhile, we are enduring the worst rain storm ever. Lightning and thunder, something awful. Sunny is hiding in our utility closet in the basement. He just can't be consoled. I feel badly for Sunny, as the amount of time and attention I can pay to him has dwindled. Nonetheless, I make sure to connect with him multiple times a day. He responds to a lot of love and given all he is coping with, he more than deserves it. One thing I do know.... animals are sensitive and I know all too well that Sunny is observing/feeling the impact of caregiving in our household. 

Tuesday, August 9, 2022

Tuesday, August 9, 2022 -- Mattie died 671 weeks ago today.

Tonight's picture was taken on August 31, 2008. It was Labor Day weekend and Peter's family came down from Boston for a visit in  Washington, DC. They stopped by several times at the hospital to visit with us. Ironically now looking back, that may have been our first holiday spent at the hospital that year. A first is always difficult, and in time we came to view  holidays as just another day, minus the activity and hustle and bustle within the hospital itself. Though Mattie loved his cousins, I think being around typically developing children was a reminder to him that he had cancer and was different. 

Quote of the day: People who have Alzheimer’s know that pieces of the puzzle are missing, and they are terrified. ~ unknown

For the past two days, Peter has stopped whatever he is doing and has gotten into the pool. I admire him for doing this. While he is outside, I will come and sit for about five minutes, but then go right back inside. I am just constantly feeling edgy, as something always needs to be done or someone needs help or to be managed. I am fortune that Peter doesn't try to convince me otherwise, because that would provide a whole other host of stress and conflict. Naturally our new life isn't easy on Peter, but Peter is well versed in difficult times and unfortunately through these times our friendship has evolved. What a bunch of life lessons we have endured!

Peter was showing me photos yesterday and I came across this one! I absolutely love it! As you can see Sunny's leg was shaved and I imagine this photo was taken early on, soon after we rescued Sunny. Once rescued, we began treatment for heartworm. It was a very harsh process that involved an arsenic derivative infused into Sunny! But I would say right from the beginning Sunny and I had a bond! It was a mutual love and Sunny infused so much life into our home 7 years after Mattie died. 

This staircase was in our townhouse in Washington, DC. Just seeing these stairs brings back memories. Mattie used to line his shoes up the stairs and I remember after he died, it was hard to remove these shoes, and then it was hard to see the stairs void of shoes. These stairs serve as a visual reminder of so many memories in my mind. If the walls or stairs could talk? I wonder what they would be sharing with the new couple living in our space. 

We have a big window over our front door. I call it the Mattie Moon window. Mainly because it is through this window I have amazing sightings. While making the bed this morning, I was wondering what life would have been like if Mattie were still alive. What would our relationship be like? Would we be living in this house? How would he help with my parents? Of course NO answers were to be found, but that doesn't mean I still don't generate the questions. 

        

Monday, August 8, 2022

Monday, August 8, 2022

Tonight's picture was taken in August of 2008. Mattie was in his first month of treatment and as you can see he was already losing his hair. The one saving grace in all of this was that Mattie loved to create. An activity that did not require gross motor movement. We spent countless hours that year designing, building, coloring, and creating. In this photo Mattie was building and decorating a tissue box holder. To this day, this tissue box holder sits on my nightstand and holds my tissues. I never thought about it at the time, but every item Mattie generated became part of his incredible legacy. 

Quote of the day: To expect the unexpected shows a thoroughly modern intellect. ~  Oscar Wilde

After I got my dad up, showered, dressed, and completed breakfast, he was off to his memory care center. I have booked all my mom's therapy appointments and testing, on days my dad goes to the memory care center. As it would be next to impossible juggling both of my parents at once. 

My mom worked hard in physical therapy today. My mom has a condition called Spasmodic Torticollis. It is a disorder where the muscles of the neck contract uncontrollably making the head turn into various postures. It can be caused by a neurologic disorder (which we are trying to figures out with further testing!) or as a result of an accident. The spasms tend to worsen when a person stands or walks, making simple tasks difficult. 

The physical therapist is doing a great job and is working on strengthening my mom's core as well as improving my mom's posture and balance. I mentioned to the therapist the importance of having a mirror in front of my mom when performing these exercises. Otherwise, it is very hard for my mom to understand the aspects of her posture that we are trying to correct. I am NO physical therapist, but I have done enough PT for myself, Mattie, and my dad to know what is necessary and is helpful. The therapist thought the mirror addition was a great idea and I hope she incorporates this in future sessions. 

After the session, my mom wanted to go to lunch. I take her to a local restaurant on days my dad is at the Center. Therefore, I have gotten to know a particular server. She is a young woman, most likely in her late twenties. I mention this because I do think with age, comes perspective and a deeper appreciation for the frailties of life. I suppose the ONE benefit to aging, this level of introspection and sensitivity!

The server mentioned that when she was in high school, her teacher told his students that they should expect the unexpected in life and therefore will never be disappointment. I imagine his message was a derivation of Oscar Wilde's quote. When she told me this, I thought, good for the teacher! But now that I am home, I frankly think such a profound statement is lost on a teenager. I am not saying that teens are not faced with all sorts of losses and traumas these days. They are, but even so, I do think that how these losses and traumas are processed differs greatly depending upon our age and experiences. Should a teenager have to absorb this message.... to expect the unexpected? My simple answer is NO! 

The beauty of youth is to be hopeful, to think big, to not be harnessed by reality that impacts possibilities. We have a lifetime to face reality and understand that life doesn't go as planned. As a teenager, would I have wanted to know that I was going to have a child who got cancer and died or have parents impacted cognitively? NO, NO, and NO. 

In addition, this server mentioned that she is happy to see us each week. I explained to her a little bit about my dad and why we are able to go to lunch alone because my dad is at a memory care center for a few hours. Again, it is the beauty of youth. She said she understood and then started telling me about her 93 year old grandmother who lives INDEPENDENTLY! Though she was making conversation, unfortunately there is NO comparison to a 93 year old living independently to what I am managing in my home daily. I did not get upset by her conversation, I just made a mental note. Needless to say I have many mental notes that have been made since my parent's moved in. 

Sunday, August 7, 2022

Sunday, August 7, 2022

Tonight's picture was taken in July of 2007, a year before Mattie was diagnosed. Back then we truly were clueless about childhood cancer and the notion would never have even dawned on us. Of course a year later, it became a diagnosis that permanently altered our lives. This photo was taken on Roosevelt Island, a place Mattie loved to explore, as he enjoyed climbing rocks, collecting sticks, and walking in nature. 

Quote of the day: That's the thing with dementia. If you're with somebody who has a serious illness, you can usually talk to them, have a laugh every now and then - the person is still with you. With dementia, there's no conversation; there's no togetherness, no sharing. ~ Judy Parfitt

This morning, I was downstairs making breakfast and the next crisis arose. My mom called me from upstairs to tell me that her bathroom rug was completely wet. She wanted me to bring it downstairs to drip dry. So I stopped what I was doing because a wet rug is heavy and will drip water all over the place. I figured the bath mat got slightly wet, but when I went to her bathroom, it looked as if she took the rug and stuck it in the shower. It was soaked and dripping water everywhere. I wrapped the rug in a towel and carried it downstairs. But unfortunately in the process I got water everywhere and had a big clean up job on the staircase and first floor. 

It would be very easy to snap and start yelling. After all I am tired and still had to get my dad up and shower him. But I kept it calm and tried to figure out if she could recreate how this happened. Mainly because I don't want to be dealing with this on a daily basis. My mom really had no insight into how this happened. I went through every scenario possible, but the only thing I can think of is she had the inner lining of the shower curtain not tucked inside the shower. Though I am not sure that would explain the issue. Unlike my dad, my mom doesn't consult me or ask for help. I don't get involved until after the problem has occurred and then I am left to figure things out and correct them.  

After I did brain games with my dad, had him walk for ten minutes and then did his occupational therapy exercises with him, Peter and I took Sunny out for a walk. I was really looking forward to that walk, until we got into it for about a block. The heat was a killer and it wasn't good for Sunny. So after a couple of blocks, we turned back and came home. Very disappointing, especially since Sunny doesn't get much walk time in anymore since my parents moved in!

This is Indie! I did not want to leave her off the blog, as I know Sunny typically gets top billing. But Indie is a very sweet Tortoise Shell cat and very attached to Peter.