Saturday, July 30, 2022

Saturday, July 30, 2022

Tonight's picture was taken in July of 2009, before we knew Mattie's diagnosis was terminal. At that moment in time, Mattie had completed chemotherapy and we were hoping to restabilize and rehabilitate him. For some reason we were under the delusion that Mattie would be able to return to school that Fall. Of course the Fall never came. 

Mattie actually liked doing chores with us and that day he helped us paint our deck at our townhouse in Washington, DC. Keeping busy and distracted were the key to surviving our day to day stresses and life and death fears. By looking at this photo, you can see just how emaciated Mattie became from treatment. 

Quote of the day: Alzheimer’s… it is a barren disease, as empty and lifeless as a desert. It is a thief of hearts and souls and memories. ~ Nicholas Sparks

This morning, after getting my dad up, washed, and dressed, I brought him downstairs and sat him at the breakfast table. Of course breakfast is on the table and of course he jumps into eating whether any of us are sitting there or not. He has lost any insight into social graces. My dad is very focused on food and when it's in front of him, all he can do is eat, and eat. He doesn't come up for air, and forget about conversing with him while eating. 

I made the mistake of leaving his daily log notebook next to him. While eating (ironically, as typically he doesn't focus on anything else) he grabbed a pen and by the time I sat down to eat breakfast (minutes later), he completed the entire day's log! Honestly I LOST IT. Despite constant explanations of the log and how to use it, he instead wants it completed and done with and will answer questions before the day or activity has ever happened. I keep reminding him that you can't provide answers and insights if things haven't occurred yet. 

One of my questions in his daily log is to list some things that happened during the morning. His response today to this was.... got washed and dressed! Again, I went back at him because his therapist and I have told him we don't want him listing things that he does everyday. No information about showering, dressing, eating breakfast, or toileting, unless something very different happened on that particular day. I sometimes feel like I am going to lose my mind and yet I know a minute later after talking with him, my dad will forget everything I just told him. It is beyond frustrating!

This afternoon, after going to the farmer's market, we then went to an open house. My mom loves touring homes and I am doing this to learn more about real estate and of course seeing if decorations speak to me and give me ideas. 

Peter came with us today (since the house was right down the block from us, we left my dad home, as every one of his needs was met, and we were only going to be a few minutes) and as soon as he and I entered the house, we noticed a butterfly theme. As you can see the heart over the door is made of butterflies and the art work is butterflies too. Also we kept seeing a photo of a young girl throughout the house. 

In the front hallway, there were more butterflies and what appeared to be a memory case of things. Frankly I have NO idea if anyone else touring this open house noticed this, I suspect not. I say this because most people do not enter a house and think..... child loss. Unfortunately our lens is ALWAYS that way. 

This cabinet is filled with butterfly china in orange. As you can imagine.... IT SPOKE TO ME. Typically I do not like the furnishing and decorations in many of the houses I tour. This one was very different. The house was stunning and the couple's taste was spot on with mine. 

They had an all season room and over the fireplace was a tribute photo to their daughter (who died in a car crash) and the picture was surrounded by butterflies. Honestly the house wasn't only stunning, but to me it was an amazing tribute to the love and legacy of their daughter. I was very impressed with this family's commitment to their daughter's memory. 

The family left their daughter's room untouched! This butterfly wreath was in her room. I truly believe all of this went over the heads of the average person touring today. But Peter and I missed nothing at all and absolutely understood the need to preserve her room and space. 

We were so taken aback by this beauty and tributes that we spoke to the realtor, who confirmed with us that the teenager died suddenly in an accident. Before we left the house, we told the agent to let the owners of the house know that their home was immaculate and beautiful and that we were deeply moved by their love for their daughter and there visual reminders and tributes to her in every room!

Friday, July 29, 2022

Friday, July 29, 2022

Tonight's picture was taken in July of 2009. Mattie was in the outpatient clinic of the hospital and was having a ball in the art therapy department's sink. Mattie and his buddies filled the sink with water and started floating all sorts of things as well as had boat races, from boats they made together. 

Quote of the day: The thing about Alzheimer’s is that it’s it’s sort of like all these little, small deaths along the way, before they actually physically die. ~  Lucinda Williams

I created a template for my dad's memory notebook. Instead of me designing new questions everyday, the speech therapist felt it would be easier if my dad got used to seeing the SAME format each day. So last night I had to generate a standardized template that would apply to whether he was home or at his memory care center. It was my hope that he would use the notebook while at the memory care center today. But my dad is a hoot. For the most part he has never been into writing, reflecting, or sharing memories. Therefore this task isn't normal to him. He did not have these skills pre-dementia, and now we are asking him to use a part of his brain he never developed. One of my questions in the notebook is:

List one or two things you did this morning and who was with you? You want to know how he responded to this question today? Keep in mind he was at the memory care center and they were doing all sorts of activities including a discussion on volcanoes and a mini demonstration. His response to my questions was...

Had a light snack! 

Do you find this response as amusing as me? If the center did not give me their daily schedule, I would think he did nothing there all day. The sad part is he honestly has NO MEMORY of any of the activities he just did. His memory span is less than a minute, and I am not joking. 

While my dad was at the memory center today, I accomplished two things. Peter and I had a call with parents whose only child died from osteosarcoma in November of 2021 and I approved another M&M Wish for a child from Honduras who is seeking treatment at the National Institutes of Health. 

The child in question is actually 20 years old, and has an untreated form of childhood leukemia. Prior to coming to the USA, he received procedures in other countries without the use of pain medication. Needless to say trauma is a part of his cancer experience and because his family is from Honduras, he is undergoing treatment without the ability to see his brother and father for months on end. Only he and his mom are in the states. However, the whole family is in town this weekend and he wanted to go to a local music concert. Because his treatment center wants him in box seats due to his immunocompromised condition, Mattie Miracle is covering this expense so he can attend the concert and reunite over something positive with his family. I am happy we can make this wish come true. 

As for the phone call with recently bereaved parents, my first reaction was.... wow they seem so much more together than I felt nine months after Mattie died. Ironically, to me this is all perception, as I know internally they are most likely struggling and trying to find a way each day to live, get out of bed, and find a way forward. 

I remember this lost feeling and appreciate this parent's desire to do something to help other children. Mainly because we couldn't help our own child and yet we want to take the knowledge we gained in order to make another child's journey a little bit easier. Or better supported at least. In addition, I think we are all focused on creating a legacy for our child, and given that we both experienced the loss of an only child, we realize if we don't create and nurture this legacy, IT WON'T HAPPEN. That too is a daunting reality and one that still plagues me today. It puts great pressure on me and at the same time, no matter how much I put into the work, it won't bring Mattie back and certainly it won't replace him. Again, some days I deal with that reality better than others and now that I have resumed my intense full-time caregiver role, I have to admit all of this can impact my mood, my feelings about the present, and my hope that I will have a better future. 

Thursday, July 28, 2022

Thursday, July 28, 2022

Tonight's picture was taken in July of 2009. That day, Brandon (Mattie's best cancer buddy) was celebrating his birthday in the clinic. His mom planned an ice cream party! Next to Mattie and Brandon was Jocelyn. Jocelyn also had osteosarcoma like Mattie and she was a great mentor to Mattie. Ironically both Jocelyn and Brandon were older than Mattie, yet all three of them got along so well together. It is hard to believe that both Mattie and Jocelyn are no longer with us. 

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

It was another day of driving and MORE driving for me. I got my mom out of the house by 10:15am this morning in order to drive to Rockville, MD for a neurology appointment. I was stressed out as I did not know if we would make the appointment in time. Getting my mom together and out the door is challenging. Literally she gets up at 5:30/6am and doesn't get herself downstairs for breakfast until 9:30am. She is scattered and not at all like the mom I used to know. Somehow I pushed her along and we got to the appointment. 

She was very hesitant to go because she has no insight into all the symptoms I am seeing and experiencing in her. For the past three years I have been saying to Peter that I suspected my mom has a form of dementia. However, my mom did not want to hear it. Not unlike the fight I had with them to get a diagnosis for my dad. Mind you I noticed signs in my dad starting in 2014/2015. But my parents did not want to listen to me. Given that I had a country between us, it was very hard for my to be proactive. But now that both of them are under my roof, I am confronting the reality and I am BIG on being proactive about signs and symptoms. 

Given my extensive experience with neurologists, I wasn't expecting a touchy feely person today! In fact I call my own neurologist, "Mr. Personality." NOT because he has one, on the contrary, he absolutely lacks any sort of personality. He makes dry white toast look fascinating. However, he is very competent and an excellent diagnostician. I took my mom to this same practice and saw my doctor's colleague who specializes in movement disorders and dementia. 

After being in the office for an hour, the doctor suggested that my mom has either Parkinson's or Lewy Body Dementia. I mentioned Lewy Body Dementia symptoms to the primary care doctor (Yes DOPEY for those of you following along), and he thought I was crazy two weeks ago. Apparently Vicki isn't so crazy after all. 

The doctor wants my mom to undergo a transcranial sonography, which is a useful tool in the differential diagnosis of parkinsonian syndromes. In addition, she will also have a two hour or longer neuropsychological test in September to assess for dementia. 

The more I am reading the more confusing it seems to be to differentiate between Parkinson's (PD) and Lewy Body Dementia (LBD). One of the biggest similarities between PD and LBD is dementia. Some studies have found that approximately 78 percent of PD patients will eventually develop dementia. More specifically, almost half of Parkinson’s patients will develop a certain type of dementia called Parkinson’s Dementia, usually 10-15 years after their initial PD diagnosis.

Parkinson’s dementia is different than LBD, mainly in which symptoms occur first (dementia symptoms or motor symptoms). Patients with Parkinson’s Dementia will first show Parkinson’s motor symptoms, followed by dementia many years after diagnosis. Conversely, LBD patients will first show dementia symptoms and may show motor symptoms later. This is exactly the pattern I have observed in my mom over the past several years. 

Lewy Body Dementia (LBD) is a chronic, neurodegenerative cognitive disorder, and is the third most common form of dementia. Unlike most other forms of dementia, people with LBD have Lewy bodies in the brain. Lewy bodies are abnormally-folded proteins found in the nerve cells of the brain. Patients with LBD may experience memory/cognitive problems, visual hallucinations, and Parkinsonism symptoms.

After this appointment, I drove back home (each way was a 40 minute drive) to pick up my dad and take him to his speech therapy appointment in Arlington, VA (which is another 30 minute drive each way). I attended my dad's session and we are working on ways to get him to use a daily memory notebook. The therapist is encouraging him to take some responsibility and to turn to his notebook as reminders about his day. She told him that the notebook.... is the written form of Vicki!

However, all of this, I took my parents out to eat and finally I am home and digging through emails and catching up on my own work at 9pm!

Wednesday, July 27, 2022

Wednesday, July 27, 2022

Tonight's picture was taken on July 21, 2009. Almost a year after Mattie was diagnosed with cancer. By this point, Mattie was off of chemotherapy and was still doing his experimental treatment and more intensive physical therapy. That day Peter took Mattie to out patient physical therapy. You can see that Anna, his therapist, was trying to re-teach Mattie to walk. Of course telling Mattie to hold onto bars and walk wouldn't work. So she put whoopie cushions on the floor, which inspired Mattie to walk toward each and step on them. Our goal was to rehabilitate Mattie so he could return to school in the Fall. The Fall never came for Mattie as he died on September 8!

Quote of the day: Caring for an Alzheimer's patient is a situation that can utterly consume the lives and well-being of the people giving care, just as the disorder consumes its victims. ~ Leeza Gibbons

I feel my dad's outpatient therapists mean well but are making me NUTS. The speech therapist wants my dad to keep a notebook of daily memories! Mind you she may want this, but he has LITTLE TO NO interest in doing this. Frankly I am not sure this was ever his thing, but now he wants to expend as little cognitive and physical energy as possible. 

Each day I prepare my dad's white board by the kitchen table. It alerts him to all the things he is doing that day. In addition, I now prepare his therapy notebook each morning. For example, today he went to his memory care center. Therefore, I designed today's questions in the notebook around his day program schedule. It was my hope that he would jot something down based on what he did. 

I went through the notebook and day care agenda with him at breakfast and showed him the questions I wanted him to complete in his notebook. I made sure his notebook was in his walker pocket and that he could visibly see the notebook in the walker. It sticks right up, it would be impossible to miss it! When my dad got home today, I found he did not touch the notebook and answered NONE of the questions. I wanted to pop my lid, but I didn't. I once again reminded him why we are using the notebook and the importance of using it to record his days. I am getting close to fed up. My dad wants no responsibility and also has no interest in anything other than eating and toileting. It is very reminiscent of caring for a baby. 

In addition, his new walker arrived in the mail today. This is walker #6! Yes I have a collection and can start my own health supplies warehouse. In any case, the occupational therapist wants him using it, and I will encourage him to use it. She wants him walking 1,000 steps a day and this afternoon, I pushed him to get up and walk ten minutes around the house. It is very tiring to monitor him constantly, and if I don't push him he wouldn't do his brain, OT, or PT exercises! 

While my dad was at the memory care center today we had some friends over. This is our friend Junko and my mom. I met Junko and her family the summer of 2007, right before Mattie entered kindergarten. Junko's son, Kazu, and Mattie were enrolled in a summer camp at their elementary school and it was through that camp we became close friends. When our boys were in kindergarten, they remained friends and Junko and I attended the school's weekly chapel each Tuesday. We were chapel mates. We sat next to each other every Tuesday and of course through Mattie's cancer journey our friendship continued and grew. My mom needs a social outlet, and I am lucky to have friends like Junko who share of their time and compassion with us. 

Our friend Ann came over today with her cousin, JP. JP visits every summer for two weeks from Massachusetts. Today JP came for lunch and swimming. 

JP and Ann in the pool. 

I must say I have been remiss in my Sunny walks. Between balancing my parents, Sunny's cancer, and this heat..... walking isn't high on my list. But I miss it! Later today, Peter and I walked Sunny. However, it was too hot for Sunny and Peter had to walk back home to get our car and then pick us up. Nonetheless, I know Sunny loved his adventure. Along our journey we came across this deer, which looked emaciated to me. 

Tuesday, July 26, 2022

Tuesday, July 26, 2022 -- Mattie died 669 weeks ago today.

Tonight's picture was taken in July of 2009. It was my birthday and that day, Mattie constructed this beautiful lighthouse card for me with Peter's parents. Mattie knew how much I loved lighthouses, and I tried to share that love with him. Together we visited many and explored their history. This birthday card lighthouse was a replica for Bodie Lighthouse in North Carolina. One of the first lighthouses we ever visited. 

Quote of the day: You can’t calm the storm, so stop trying. What you can do is calm yourself. The storm will pass. ~ Timber Hawkeye

I started my day with a conference call. I have to admit that I was stressed out about this because my morning always feels like.... to beat the clock! I have to get myself together, make breakfast, get my dad up, showered, dressed, and downstairs for breakfast. Then of course we have to do brain games and his exercise routine. If I don't do it, it won't get done. I had to do all of this before 10am, when I had to then hop on a call and look and sound like a "normal" human being! I have been asked to be a part of a webinar hosted by the National Institutes of Health in October. I am the only advocate on the panel and today's call was to meet the other panelists and find common ground for us to discuss. It was a wonderful phone call and pulled me out of funk. That was short lived however!

After the call, my mom needed to get to Washington, DC for a hair appointment and my dad had to be at the hospital for an occupational therapy session. Thankfully Peter dropped my mom off and I went with my dad. His therapist is excellent but has had to learn the hard way that my reporting on my dad's conditions and abilities, though harsh, are spot on! Today she wanted him to work on learning how to roll to his side, so he could get out of a bed more easily. I told her "this boy doesn't roll, and hasn't for decades." She did not believe me. She worked so hard on getting him to roll, that she landed up emptying her pockets, taking off her photo id, and so forth. At the end of the day, she couldn't get him to roll! Gold star for Vicki! If she couldn't do it, rest assured, I am not attempting it. 

In addition, the therapist wanted me to remove pillows behind my dad's head and under his knees when he sleeps at night. She feels that his years of using pillows has contributed to his hunched over posture. Maybe true, but I feel like our time to correct this stooped posture has come and gone. After trying to remove pillows from his head today, she quickly understood my dilemma. As my dad was practically screaming in pain every step of the way during the session. She asked if this was what he does to me at home, and of course I said YES! Moving my dad is like trying to pull taffy! It is strenuous and difficult!

Don't you know the therapist wants me to purchase a different walker for my dad to use. I am now onto walker #6! After this purchase, I am DONE, as my walker collection for him is ridiculous! After this session, I got my dad in the car and we drove to Washington, DC to pick up my mom. The salon is very aware of how fragile she is and they know not to let her out of the salon unless I call telling them that I am outside. While driving through town to pick her up, I drove passed where our townhouse once was, and I am continually saddened to see the encampments surrounding this beautiful space. 

I then drove home to do a few things before taking my parents out to dinner. I received a birthday gift in the mail today. Have you ever heard of Send a Cake? I hadn't and what an experience. There really should be a note with steps on how to open this surprised explosive box. Peter was next to me when I opened the box. I could tell there was a piece of cake in the box, but never expected butterflies. When I opened the lid, things started flying out at us. It scared us and I felt bats were flying out at me. 

Here is a video of a young girl opening such a box! Though she did it much more gracefully than me. In her version the butterflies gently fly out. When I did it they jumped out at me. 

Monday, July 25, 2022

Monday, July 25, 2022

Tonight's picture was taken on July 25, 2009, my last birthday with Mattie. That day, Mattie's child life specialist gave Mattie a cake to give to me. We had it at home and I am glad Peter captured this photo of us together. As you can see Mattie's hair was growing back since he was off chemotherapy. However, about ten days after this photo was taken we learned that Mattie's cancer was terminal. Yet in that moment of time we knew Mattie wasn't feeling well, but it would never have dawned on us that his cancer would come back with a vengeance only 6 weeks off of treatment. 

Quote of the day: Legends say that hummingbirds float free of time, carrying our hopes for love, joy and celebration. The hummingbird's delicate grace reminds us that life is rich, beauty is everywhere, every personal connection has meaning and that laughter is life's sweetest creation. ~ Papyrus greeting card

My day started with opening my eyes and seeing a big gift bag on my dresser. I have no idea where Peter found the time to get me anything, but that is the beauty of Peter. All very touching and meaningful gifts, one of which was an angel holding a dog. The title was 'angel of friendship,' to symbolize Me and Sunny! 

Since my parents have moved to Virginia we have ventured to about three or four restaurants. All of which are owned by the Clyde's restaurant group. You may think one would get bored going to the same place week in and out, but it doesn't given the cognitive issues we are balancing. 

Therefore, over these last 9 months, I have gotten to know several servers and the managers at these restaurants. You can't miss us coming into a restaurant, as I am carrying a pillow for my dad to sit on, a tote bag filled with his toiletry items which are needed for bathroom accidents, a blanket for my mom, and the list goes on! 

This is a photo of me with Cheryl! Cheryl works at Willow Creek in Ashburn, VA. She is a class act. Over time we have gotten to know each other and we share many similarities. Her son is a brain cancer survivor and her mom had dementia. Last night, Cheryl surprised me with dessert and a birthday gift. 

Peach cobbler! Made with fresh Virginia peaches. I am a peach fan, so this was appreciated. But more than anything, I am just touched that Cheryl would think of me and wanted to celebrate my birthday. As I told her, through these 9 months we have become friends. 

Cheryl's gift to me. Notice the sunflower and butterfly on the bag! She is aware of my attachment to both. 

Inside the bag was this charming butterfly box filled with a necklace and sunflower pin. 

After we picked my dad up at the memory care center today, we went out to another Clyde's. This one is in Rockville, MD. Pictured with me is Dawn. We met Dawn when she used to work at the Reston, VA Clyde's (before it shut its doors in May of 2022). We are so fond of Dawn, that we make the trek from Virginia to Maryland to see her once or twice a week. Dawn lost her husband to cancer and yet again I have bonded with someone over loss and trauma.

Dawn surprised me today with flowers, a very meaningful card, a bottle of wine, and dessert!

The card is so charming and inside the card was tonight's quote! 

Peter snapped this photo of us. 

A confetti cupcake. Mattie would have been proud, as he was a major cupcake fan!

My kitchen counter is filled with cards and I am very honored to be thought of by so many. 

Sunday, July 24, 2022

Sunday, July 24, 2022

Tonight's picture was taken in July of 2008. It was actually four days after Mattie was diagnosed with cancer. That day we took Mattie to Roosevelt Island. It was always our retreat from the city and a place that Mattie loved to explore. That day we took Mattie's remote controlled boats to the Island and Mattie got to float and drive them in the water. Also ironic, because prior to Mattie getting diagnosed with cancer, I did not let him in the Potomac River, much less float a boat in it. As I deemed the water mucky and dirty. However, once diagnosed, the boats went in the water and Mattie had those wonderful memorable adventures on the Island. 

Quote of the day: If you learn to listen for clues as to how I feel instead of what I say, you will be able to understand me much better. ~ Mara Botonis

Today's quote is spot on, especially when caring for someone with dementia. I know my dad's every movement so well that he really doesn't have to say much. I can tell exactly what he needs based on his posture, facial expression or sounds. This week I left home for a couple of hours, on Thursday and on Saturday. One was for a friend's party and another was for a birthday luncheon for me. Though I tried to prepare my dad, I think my absence caused him anxiety and stress. Which for him triggered a bout of constipation. With his irritable bowel syndrome, I can get both extremely. Usually with him it is diarrhea, but this week's anxiety triggered the opposite problem. Honestly my dad with constipation feels like a national crisis. 

Yesterday when I got back home, out came the Senokot. Mind you my dad takes four capsules of Metamucil everyday. However, sometimes that isn't enough, and I have to tweak what he gets. I learned this balancing act from his gastroenterologist in Los Angeles. Thankfully I was part of that ordeal and conversation there, because now I know what arsenal of things I need here to be successful with him. 

Check out all the generous items donated to us from friends. I decided to start our November item drive early! Now that we have four carts, it takes a lot to stock them. Particularly the one at the National Institutes of Health. For all of our other carts, we provide funding directly to hospitals to stock our carts throughout the year. This isn't true for our cart that supports a government facility. Instead they can only accept gifts in kind. So I have to be more strategic about getting items for that cart. 

Peter snapped a photo of me before I left for my birthday luncheon yesterday. 

This is our first year growing sunflowers! They have taken off in our garden and the bees love it. Peter captured this bee on one of the sunflowers today. I am trying to make a point of it now to spend at least five to 10 minutes each day outside. As we are surrounded by greenery and beauty and my mind needs this reprieve. 

A big beautiful Spicebush Swallowtail visited our garden and hung out on our metal butterfly stake. Peter captured this precious moment! Rest assured there are Mattie reminders all over our garden.... the moon, the sun, and butterfly garden art!