Saturday, August 20, 2022

Saturday, August 20, 2022

Today's photo was taken in August of 2009. By this point, all of us knew Mattie's situation was terminal. We received visits from my parents, Peter's parents, Peter's brother, sister-in-law, our niece and nephews, and my lifetime friend Karen. This particular day we set up Mattie's pool on our deck and Mattie put his remote controlled boats in the pool. We tried to do whatever it took to keep Mattie distracted and engaged. But it truly was difficult as Mattie was in a great deal of pain and was having trouble breathing. 

Quote of the day: Kindness is an electrical spark of life that runs through all kingdoms and has a reciprocal action when shown to others. ~ Joe Hayes

When I took my parents out to dinner last night, we were surprised by a visit from Anthony. Anthony is the assistant general manager of the Clyde's restaurant group. We got to know Anthony from the group's Reston, VA location. Unfortunately that restaurant closed its door in May of 2022, because the owner of the property did not want to continue its lease with Clyde's. But it was at this special restaurant that we met Anthony and Dawn (my dad's favorite server). 

My family is so fond of Dawn that we drive sometimes an hour each way to Maryland to dine with her. Dawn is outstanding and is great stimulation for my dad! She has a good sense of humor and puts up with my "report cards" at every visit. I have generated so far around 20 report cards and I even bring stickers for the cards. The report cards ask interesting questions, and I design them so that my dad can listen and become engaged in conversation. 

Anthony now works at the restaurant group's Georgetown location. Though I am familiar with that location, I know it is not a good venue for my parents. The restaurant is congested and tight, and not forgiving for someone using a walker. So literally we haven't seen Anthony since May. He happened to be at the Maryland location last night, when we were there! It was meant to be, and it felt like a reunion. My mom snapped this photo

My dad loves Anthony and had a big smile on his face throughout the visit. In addition, when I prompted my dad this morning, he was able to remember seeing Anthony last night! So you know Antony holds some weight in my dad's head. When the Reston, VA restaurant was open, Anthony would greet and chat with us on every visit. Over time because we were such repeat customers, Anthony would comp all sorts of things for us and on the last night that the restaurant was open, he paid for our entire dinner. He is really in a class of his own. 

My dad loves going out to eat. In fact the first thing he asks me every morning is.... are we going out to eat today? I don't take it personally, as he likes my cooking. But I think he likes the stimulation of going out and certainly having people like Dawn and Cheryl taking good care of us makes a huge difference. 

Yesterday evening, after I got home, I sat in the front yard with Peter and Sunny. Literally while we were out there a mama deer and her baby walked right in front of our house! A very different sighting from our days in the city. 

This fellow is hanging out on the front of our house. He looks just like a green leaf in profile! Katydids are typically nocturnal insects that are related to crickets and are noted for their mating calls. Katydids are also known for their large hind legs and extremely long threadlike antennae. The katydid produces the repetitive song (by rubbing its wings together) for which katydids are named. The song is phoneticized as “katy-did, katy-didn’t.”

Are you familiar with this sound? I know I am, but frankly I never knew what I was hearing were katydids! I learned something today!!! Check out this video to hear the sound of a katydid!

Friday, August 19, 2022

Friday, August 19, 2022

Tonight's picture was taken in August of 2009. By this point we knew that Mattie's cancer had metastasized and his situation was terminal. Peter and I were beyond overwhelmed and that day, Mattie was surrounded by all his hospital buddies in the child life playroom. Everyone was trying to engage with Mattie and distract him. Sitting next to Mattie was Jenny, one of Mattie's art therapists. Jessie (the other art therapist) was in grey and looking on, and Liz (in black) was one of the resident artists who worked with Mattie on creating many pieces of poetry during his time in the hospital! How I kept it together back then is beyond me because it felt like our world was crashing down quickly. 

Quote of the day: Fatigue makes fools of us all. It robs you of your skills and your judgment, and it blinds you to creative solutions. It's the best-conditioned athlete, not the most talented, who generally wins when the going gets tough. ~ Harvey Mackay

The art of caregiving has a lot to do with today's quote. As fatigue is a natural part of the process. How could it not be?! When you meet the needs of people around the clock, for months on end, it takes its toll. But physically and emotionally. But like this quote, the one who wins the caregiving race is not the one who is the most talented, but instead the one best conditioned. Of course being conditioned as a athlete, is a lot different from being conditioned as a caregiver. To be a conditioned caregiver requires inner strength, patience, and an ability to hold it together when everything feels like it is falling apart. It also requires the ability to be hopeful and to realize that you must take it one day at a time. 

Some days I can take it better than others and some days, I can feel anxious because I am trapped, unable to control any aspect of my life. Yesterday was a long day, as my dad had occupational and physical therapy back to back. We were at the hospital from 2:30pm to 5:00pm. Then after that I took my parents out to eat. By the time I got home, it was after 8:30pm and my dad was super wiped out. 

I happen to like my dad's therapy team. They are all young women, most likely in their late twenties, but they are competent, compassionate, and have a lot of positivity. That said they are also realistic and have some sort of appreciation for the toll all of this has on me. It is very challenging to care for my parents all day and then to also shuttle them around to therapy appointments throughout the week. Of course with my dad, he won't remember the therapy session immediately after it is over. Therefore if he will have any success in therapy, it is because I am managing his care and following through on the exercises with him at home. My daily to do list is truly over the top. 

This morning, while my dad was at his memory care center, I took my mom to her own physical therapy appointment. My mom goes to a different place for therapy and though her therapist is different from my dad's in personality, I like her too. However, what I notice about adding therapy to my dad's routine, is that he is far more exhausted and also more negative. If that is at all possible. 

Meanwhile, in September one of my dad's colleagues who lives in England, plans on coming to visit and stay with us for a few days. I am trying to warn him what visiting us will be like. He hasn't seen my parents since before COVID. They have changed dramatically since he last saw them and there is NO WAY on earth that I can go sightseeing or do anything with someone visiting from overseas. I have no idea how such a visit will go and for the most part I don't like bringing people into my dysfunctional world right now because I truly can hardly manage my day to day existence.

Thursday, August 18, 2022

Thursday, August 18, 2022

Today's picture was taken on August 6, 2009, the day after we learned Mattie's cancer metastasized throughout his body, and his diagnosis was terminal. Pictured with Mattie was Jocelyn, Mattie's osteosarcoma buddy. It is absolutely tragic that both of these beautiful people lost their cancer battles. Jocelyn came to the clinic that day to help support Mattie. She came with her sister and all of them constructed cardboard boats at the art table and then had races in the large sink by the table. While this was happening, Peter and I were meeting with Mattie's doctor to talk about the next step of his care..... end of life care. It was a day I will never forget, and I can't tell you how horrific it was to hear from a doctor that there was NOTHING else that could be done for Mattie. Mattie was dying and I had no control over this!

Quote of the day: Go and love someone exactly as they are. And then watch how quickly they transform into the greatest, truest version of themselves. When one feels seen and appreciated in their own essence, one is instantly empowered. ~ Wes Angelozzi

It's been a ridiculous day so far and it is only 1pm. This morning was like a revolving door with people coming to service some equipment in our backyard, the plumber (who is still here and working on issues), Sunny's groomer was in the driveway in her mobile unit, and of course me balancing my parents. Thankfully Peter is home because at some point, I literally want to scream!

Meanwhile, after eating breakfast and doing brain games today, my dad took to his chair and is still there. It is 1:15pm, and this is my current view.

My mom spends a large amount of daytime hours sleeping if she isn't moving. I have noticed that she stays up very late at night and I wonder how well she actually sleeps. All I know is she is up at 5:30 or 6am every morning, when in my opinion she could be sleeping later so she has more energy for the day. But I am learning rationalizing with either of them is futile. 

I tried to get my dad to do his 10 minute walking routine, but I gave up. He has no energy today. Given that at 2pm, I need to pack them up to drive 30-40 minutes to Arlington for my dad's back to back occupational and physical therapy sessions, I am not worried that I couldn't get any physical activities done at home. In fact, I am actually worried about how I will keep my dad awake and engaged for his 45 minutes of occupational therapy and his 90 minute physical therapy evaluation. I realize that I have given it my best shot, but my dad's days of therapy for beneficial purposes are coming to a close. 

Yesterday I baked homemade brownies. The reason I did this was for our plumber. He is a lovely person, who drops everything to help us at a moment's notice. We met Cody about a year ago, and has helped us with about every plumbing need possible. Like me, Cody loves chocolate, so whenever he visits, I bake! Cody even introduced Mattie Miracle to his company and the company is a donor both as an annual sponsor and they contribute gifts in kind to all our item drives. 

Wednesday, August 17, 2022

Wednesday, August 17, 2022

Tonight's video was taken in August of 2009. Literally a month before Mattie died. We bought Mattie Speedy Red, a ride-on vehicle which he always wanted. I remember pre-cancer when Mattie told me he wanted such a vehicle, the answer was always no. I figured it was expensive and this would be an item he would grow tire of. Funny how my perspective changed with a cancer diagnosis. This video shows Mattie's first time driving Speedy Red. I had no idea if Mattie understood the concept of driving, so I sat in (or squeezed into) the passenger seat. Mattie was hooked up to all sorts of machines (which sat in the back seat of the car), so there was no way I was letting him drive alone. Well not at first anyway! Mattie took to driving like a duck to water. He was a natural and understood the concept of the brake and gas pedal, so much so that after a few tries, he wanted to ride alone. Which I complied with, but I was running behind the car just in case. 

Quote of the day: To lose patience is to lose the battle. ~ Mahatma Gandhi

Some days my patience is better than others. But I agree with Gandhi's sentiment, because patience is absolutely needed in order to survive and cope with any crisis. I had a conference call this morning with a pharmaceutical company which has asked me to serve as their spokesperson for mental health issues and childhood cancer during September's National Childhood Cancer Awareness Month. It was a very interesting call, and I decided to move forward with this request. After the call, my mom wanted to go out to CVS.

Once a month, my mom likes to shop at CVS, particularly because they send me a 30% coupon each month. The other day she handed me a coupon to hold onto, so that we could use it today. So I did! My mistake was I never looked at the expiration date. If I had, then I would have realized she gave me a coupon that expired in June. Needless to say, we went to CVS and filled a cart with items she wanted. We got to the check out counter and I handed the coupon to the salesperson. At which point she tells us the coupon isn't valid. Mind you this salesperson is a peach, as she deals with us every month. She went above and beyond to help us and tried to find the August coupon electronically. But paper coupons can't be retrieved electronically, so I have learned. 

As we were trying to figure this out, my mom was getting herself very worked up and then tells me that I AM THE ONE WHO lost her August coupon. Meanwhile I was trying to work the problem with the salesperson. When I tell you I am frazzled I am not kidding. I am balancing every need for each of my parents and I assure you there are MANY. Even if I had lost the coupon, which I know I didn't, I would personally cut me some slack. How I just did not explode at the CVS counter is truly a feat of grand proportion. Some days I just want to scream and other days I get very dejected that I just can't go on like this. But then who is going to listen to my rant? 

I remind myself to have patience. That things won't always be like this. But at the same time, the stress is overwhelming and not having a minute to rest, to catch up on work, to focus on anything other than caregiving is depressing. Slowly I am losing whatever identity I once had, and of course my fear is once this caregiving is all over, I will be very lost, directionless, and friendless. It would be very easy to also dump the Foundation, because I just don't have the time or energy for it. But this is my commitment to Mattie, and one that I take seriously no matter what. 

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.