Tuesday, August 16, 2022

Tuesday, August 16, 2022 -- Mattie died 672 weeks ago today.

Tonight's picture was taken in August of 2008. Mattie was in his first month of treatment and was home that day. His long time occupational therapist, Kathie, came over to visit. Kathie worked with Mattie when he was a preschooler (pre-cancer) for about two years, twice a week. I turned to Kathie because Mattie's first preschool and pediatrician thought he was a special needs child. What I came to appreciate was that Mattie had a sensory integration issue which explained his sensitivities to sound and touch. In fact the first time Kathie met Mattie for an evaluation, he pulled her glasses right off her face. If you did not understand Mattie's behaviors well, you would honestly think he had an aggressive side to him. But I think it was frustration from being overwhelmed by his environment. Over two years of therapy, we worked on desensitizing Mattie to certain sounds and textures and by the time he entered kindergarten NO ONE knew Mattie had any issues. I am a strong believer in early interventions, as I saw they worked beautifully with Mattie. 

Quote of the day: You can’t converse with Alzheimer’s sufferers in the way you do with others; the dialogue tends to go round in circles. ~ Kevin Whately

My dad had back to back therapy today starting at 3pm. It is now 8:30pm, and I just got home. I am wiped out. When he goes to therapy, I have my mom in tow. I leave her with some hot tea in the hospital's atrium. While she is there, I go into all of my dad's therapy sessions. I am needed because within five minutes of the completion of a session, my dad remembers nothing. So in essence for therapy to go effectively, I have to be the driver and task master. Which I assure you is exhausting. 

After five sessions of speech therapy, my dad was discharged from that service today. Not because he has stabilized, but because there is just so much that can be done with him. Therefore whatever we learned in session, the suggestion is I continue it at home. I went into today's speech therapy session with the idea that TODAY was going to be the last time my dad would use this daily log notebook that we created. I felt this way because I am the one working hard and getting super frustrated with this book. My dad has no desire or interest to pick up the book and find information out for himself, much less record facts, thoughts, and feelings about his day! I keep saying to myself... who is this book for? Who is benefitting from this book?

Yet between occupational therapy and speech therapy today, there was a thirty minute break. While sitting with my dad, he decided to share with me his reflections on the top five things that influenced his life. I was absolutely stunned that he wanted to be reflective, so I grabbed his daily log book and encouraged him to write it down. Here were his top 6 things:

1. When my dad entered kindergarten, he did not speak English, only Italian. 
2. My dad played his saxophone on the stage of Carnegie Hall as a child. 
3. In college, my dad tutored the blind. 
4. My dad sat for the 14 hour long CPA exam.
5. My dad was a surgical nurse in the Army.
6. My dad played saxophone with the famous Stan Getz. 

Now if we did not have his notebook, we wouldn't have recorded his thoughts in that moment in time! With dementia, you NEVER will have that moment again, so you got to take it when it comes and be ready! So just when I think I should give up, my dad surprises me. I shared this revelation with the therapist today. Within speech therapy, we were trying to encourage my dad to share more content and conversation. We feel this is important because right now my dad writes and talks like a telegram. Words and not sentences! 

The therapist worked with my dad on a three part strategy: (1) acknowledge the question, (2) report out information from his notebook, and (3) provide a reflection or insight from this reported content. For example: On Wednesday of last week, we had a horrific thunder and rain storm (as reported in the notebook). So my question to my dad was did something unusual happen last Wednesday? Following the three step model to get him to share information and thoughts, he could say for #1 (acknowledge question): Yes something very unusual happened on Wednesday. For #2 (report out information), my dad could say, there was a terrible thunder and lightning storm. Finally, for #3 (reflecting on the topic), my dad could say.... we did not have storms like this in Los Angeles and I find them scary. 

No matter how many times Maria (the therapist) and I went through this with my dad, he couldn't get it. So it is no surprise that when we met up with my mom and she asked him about his session, he had NOTHING to say. I am honest, within five minutes, whatever he just did, is LOST. His brain is like a big black hole and there are times I have great patience and manage this well, and other times, I am frustrated. The book is a great source of frustration for me, but I am aware of the fact that my dad has NO insight into his situation or his significant degree of memory loss. Therefore he has no incentive to do something about it. I get his situation, but I assure you I don't like the impact of it on my emotional state! 

Monday, August 15, 2022

Monday, August 15, 2022

Tonight's picture was taken in August of 2008. Mattie was in his first month of treatment, and despite the fact that the psychosocial staff was just getting to know us, they learned quickly that Mattie was all about creating. That day, Mattie's art therapists set up all sorts of glazing materials for Mattie's clay creations. Mattie did better when he was physically and emotionally engaged in a project. It did not take away from the fact that he had cancer, but it was the necessary distraction to journey through our long and challenging days. Ironically to this day, I have ALL the clay items you see on this table on display in my office! 

Quote of the day: Offering care means being a companion, not a superior. It doesn’t matter whether the person we are caring for is experiencing cancer, the flu, dementia, or grief. If you are a doctor or surgeon, your expertise and knowledge comes from a superior position. But when our role is to be providers of care, we should be there as equals. ~ Judy Cornish

When my parents got to the restaurant last night, they or I should say my mom was surprised to see flowers and a gift. I have worked all week with Cheryl (our wonderful server) on these surprises. I think I was successful. 

I am not the only one feed up with the usual routine. It gets to my mom and of course Peter. Peter and I tried to make yesterday go as smoothly as possible, in order for both of my parents to enjoy their day.

At dinner, I asked my dad to reflect on his wedding day. To remember one piece of information and share it! HE COULDN'T! Not even one. He had no idea where his wedding reception was, who was their maid of honor and best man, and the list went on. It is truly disturbing his level of memory loss and if he continued to live alone with my mom, they both would be very easy targets for people with bad intentions. 

Peter snapped a photo of me with my parents and Cheryl. We see Cheryl weekly, and have been doing this since December! She and Dawn (who is in Rockville, MD) are incredible people. 

Cheryl and her son picked up the flower arrangement and balloon I ordered and she even gave my parent's a gift!

Cheryl knows my parents prefer ice cream and sorbet. So she made a special trip to buy a number "6" and a number "2" candle, to spell out 62 (for their 62nd wedding anniversary). She is a real peach. 

Between our kitchen and family room, we have a pony wall. I have it lined up with flowers and cards to celebrate my parents. 

Sunday, August 14, 2022

Sunday, August 14, 2022

Tonight's picture was taken in August of 2008, soon after Mattie was diagnosed with cancer. That day, he went for a walk with Peter, our neighbor JP and his dog, JJ. Mattie loved JJ and always wanted a dog of his own. I am grateful that Mattie at least had JJ in his life. Prior to Mattie's diagnosis, he would be running around with JJ and had no problem holding his leash. But after his diagnosis, Mattie was a bit more fearful and this translated in his behavior around JJ. 

Quote of the day: The only thing that is ultimately real about your journey is the step that you are taking at this moment. That’s all there ever is. ~  Eckhart Tolle

This photo was taken on August 14, 2020. It was my parent's 60th wedding anniversary. Though we were in the throws of COVID, I arranged for a dinner gathering with two friends of theirs and we sat outside in the heat. At that point, my dad was two months post-recovery from being hospitalized for two weeks (urinary sepsis and an impacted colon). This hospitalization sent his dementia spiraling downhill, as he went into the hospital with early stage dementia and came out with delirium, which when stabilized left him with moderate stage dementia. It is truly hard to imagine that my dad was able to think for himself, shower and dress himself without assistance up until May of 2020. 

This photo was taken on August 14, 2019. My parents were in Virginia with me because we just got back from a Canadian cruise together. It was on that cruise that I confronted my parents about my dad's dementia (yet again) and said there was no more waiting, we had to address this with the doctor NOW. For this cruise, my mom did not help my dad pack. So he did not bring the right clothes NOR did he bring enough of his prescription medication! Now looking back, I realize that my mom wasn't only in denial about my dad's condition, she was having issues of her own.

This photo was taken on August 14, 2013. We were on a European cruise and we celebrated my parent's anniversary on the ship. Traveling with my dad was challenging (not like now) but it still had its issues. I am thankful they did all of these trips, because getting around now would take an act of God. 

This evening, Peter and I are taking my parents out and though these milestones look and feel different now, I still feel it is important to acknowledge these moments in a way that works for them. 

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.