Tuesday, September 19, 2023

Tuesday, September 19, 2023 -- Mattie died 729 weeks ago today.

Tonight's picture was taken in September of 2008. We were in New York City, in order to consult with another cancer institution about Mattie's treatment plan. In between appointments, we went touring around the city. As you can see, we took Mattie to the famous FAO Schwarz. I would say this was about the only thing that day that made him smile! 

Quote of the day: The life of the dead is placed in the memory of the living. ~ Marcus Tullius Cicero

At noon, I took my parents to the pharmacy so we all could get flu shots. Prior to my parents moving in with us, I never got a flu shot. I found in the past that this shot would make me feel so sick that I was unable to function for days after receiving it. However, now that I need to be healthy and function, and my parents are frail and my mom is immunocompromised, I decided last year to get the flu shot annually. I figure even if I get the flu now, perhaps my symptoms will be more mild. 

I honestly did not know whether we were going to make our noon appointment on time given that my dad was running to the bathroom with diarrhea. His bowel movements yesterday were so intense, I would have thought that he wouldn't go for two days or more. But that isn't how his system works. Of course while I am running around doing all the chores, tasks, and caring for everyone, my mom was complaining. Well that is until I started screaming at her. Truly sometimes the only way to get her to STOP with her lament is to scream. I don't like doing it, but she has a real lack of insight into her behavior. 

We did get the shots and almost immediately my mom and I got intense head pain. I am used to daily headaches, so I plowed through that feeling, but it was noticeable and it lasted for several hours. I truly felt like my head was in a vice and I felt foggy at the same time. Whereas my dad has developed nausea and I am monitoring him even now at 6pm in the evening. 

While I am typing this, both of my parents are resting and seem wiped out. I of course do not need one more thing to knock me out. So my goal is to dial it back tonight and try to have a slower evening. 

Monday, September 18, 2023

Monday, September 18, 2023

Tonight's picture was taken in September of 2008. It was Mattie's second month on treatment, but it was before any of his limb salvaging surgeries. Therefore he was able to stand and walk around. He was far more independent at that point in time. Which was a good thing, as adjusting to life in a hospital and being on high dose chemotherapy was not for the meek. As you can see, Mattie could do a lot with all the items and gifts he received. In this particular case, he built a tower out of markers. I can't tell you all of the things we worked on, played with, and used to keep Mattie busy, engaged, and with diversions from the cancer reality. 

Quote of the day: Happiness is beneficial for the body, but it is grief that develops the powers of the mind. ~ Marcel Proust

This week is apparently "Adult Day Services Week" at my dad's memory care center. This week honors all of the staff and participants, and there are fun themed days and activities. Today's theme was HAT DAY! I don't think my dad really wanted to participate, but I decided to have him wear a hat that was light weight and wouldn't bother him throughout the day. 

At first I was thinking of a humorous hat, or one of my hats, but then I figured, he should wear something that belonged to him. This barrette was actually my dad's! Once I put it on his head, I had him look at himself in front of the mirror. He saw himself and laughed! I told him he was channeling his inner Monet! When he got downstairs, I snapped this photo before he had breakfast. I am so glad I did this, because I have been showing him this photo all day long. My dad had no recollection that a hat was on his head, he did not realize it was hat day, he did not observe others wearing hats, and he also said no one commented on his hat. 

I know for certain that two out of the three are false. When I dropped my dad off this morning, the woman who helped him inside commented on his lovely hat and thanked him for a wearing a hat in honor of Services week. Of course once my dad goes inside, I have no idea if hats were being discussed or whether others commented on his hat. In addition, through the glass windows, I could see many other participants and staff members wearing hats. So though my dad doesn't remember seeing hats, I know that doesn't mean it didn't happen! I try to remind him of this and I am well aware that his memory span is about 30 seconds. I am not trying to be funny, I am quite serious. 

While my dad was at his memory care center, I drove my mom to the hospital for her physical therapy session. The therapist is great with my mom, but both she and I know that my mom's memory is very challenged. The therapist will do an activity with her one week and the next week, it is like a completely NEW activity for my mom. She has to retention! Having memory issues makes it harder to re-qualify for therapy, and I have a feeling that my mom has been able to continue therapy for over 8 months straight because of my attendance, participation, and help reminding her about specific exercises at home. 

After therapy, I got my mom back to the car and then I drove to CVS to pick up prescriptions for them. Once chores were complete, I picked up my dad at his memory care center and I drove them to Maryland for a late lunch. Peter is in Philadelphia for the week, and therefore, I have decided to take my parents out to eat a couple of days this week. 

While eating, my mom was peppering my dad by asking him what he did at his memory care center today! This is a ritual I hear three times a week. My dad carries a notebook and pen in his shirt pocket. We remind him constantly to write notes to himself, to help him jog his memory about activities performed. Despite constant prompts, he doesn't remember to use his notebook. After spending 4-5 hours at his memory care center, when we pick him up, he can't recall ANYTHING he did that day. Not even what he did right before walking out to the car! It is extremely frustrating as his caregiver and yes I know he has a memory problem, but I also think there is a part of him that simply doesn't care, doesn't want to be bothered, and rather be a couch potato. 

I used to have a specific routine with my dad each morning since he moved here in 2021. One was to write in his daily log book and the other was brain games. Slowly now over time, I have eliminated both activities. Brain games were eliminated first because I found that I was the one doing the puzzles and reading comprehension and he would hurry me along to get the activities over with. More recently, within the last two weeks, I have now stopped the daily logbook. Again this was something he didn't enjoy doing with me and when I would ask him questions about the book (something his speech therapist encouraged me to do), he would get borderline hostile. So I made the executive decision to stop the log, it was irritating him and making me angry. But I think it is unfortunate that he has no interest in using and exercising his brain. Just a sad commentary. 

Lunch out was another disaster, where he had a bowel movement in his pants. I had to fully clean him and in the process of doing this, his fleece jacket landed up in the toilet bowl. Another thing I had to manage and take home and throw in the washing machine. I am on my third load of laundry, and this is just for today! 

There are countless family caregivers in the United States every day doing what I do. I know there are, as I studied this for almost a decade in my doctoral program. But all I can say is caregiving for parents is hard to describe and I can appreciate why many adult children do not want to take this on within their own homes. 

Sunday, September 17, 2023

Sunday, September 17, 2023

Tonight's picture was taken in September of 2008. That week we visited New York City, to take Mattie to a renowned cancer center to be evaluated. That particular evening our former neighbors in Washington, DC invited us and my lifetime friend Karen (pictured here) over to their home for dinner. They were a NYC support team. Today is Karen's birthday, so it seems fitting to post this photo of the three of us. At that moment in time, we had hope that perhaps we could attack Mattie's cancer and give him a chance at life.  

Quote of the day: Grief can't be shared. Everyone carries it alone; his own burden in his own way. ~ Anne Morrow Lindbergh

On September 29, I have been asked to speak at a webinar on Legacy Making. The webinar is being hosted by the International Psycho-oncology Society. I am going to be discussing my own personal views on the topic and how it relates to us building Mattie's legacy! So what does legacy actually mean? Well the Oxford Dictionary says that legacy is "the long-lasting impact of particular events, actions, etc. that took place in the past, or of a person’s life."

For the past two to three weeks, I have been giving this topic of legacy making A LOT of thought. This is a buzz word that rubs me the wrong way. Specifically because of my history with it. When Mattie was dying, we did not work with anyone on the clinical team to capture Mattie's thoughts, reflections, or how he wanted to be remembered. He was 7, I don't think Mattie would have put up with such clinical exercises, and furthermore, I am NOT sure we were mentally prepared for Mattie's death. Having a discussion about legacy making would have set me off. 

Moving forward. After Mattie died, Peter and I were invited to a palliative care conference to talk about bereavement and our journey with Mattie. Before our panel presentation there was a session on legacy making. The social workers discussed the topic and the clinical resources they use to help families capture a child's legacy (while the child is facing a terminal diagnosis, and in end of life care). The social workers showed examples of remembrance books created by the child, a listing of activities of how the child wished to be remembered, a listing of what friend should get what toy, etc! As Peter and I were listening to this, all that was going through our minds was.... WE DIDN'T DO THIS! WE DON'T HAVE ANY OF THIS and WE FAILED! Literally we were dejected and troubled and frankly now over a decade later, I can still recall that moment in time like it were yesterday. 

The problem with all of this was the rigid interpretation of legacy! To this group of clinicians, legacy meant something that is captured from the person who is dying which is then passed down to those left behind. It is a very purposeful and intentional task. I can see this working for a teen, young adult, or adult, but how does such a process work with a young child? I think it doesn't! In fact, I would say that legacy making must be done by the ones LEFT BEHIND, those of us still living and trying to make sense out of a traumatic loss!

On of my presentation slides for the webinar is this one! Notice I show two images. One is a person handing over a legacy to most likely a person left behind. The other image has been my interpretation of legacy.... which is creating a life story together. 

When I shared this slide with the leader of the webinar, she encouraged me to replace the "or" in this or that with an "and." 

I absolutely understood her perspective, but for me, who lost a seven year old child, it wasn't "this and that," it will always be "this or that." I feel strongly about this because I did not have someone on Mattie's healthcare team working with us to capture Mattie's feelings and thoughts before he died. Again in all fairness to them, I think they were traumatized too with the rapid pace Mattie was dying. We went from fighting the illness one minute, to end of life care the next. Now 14 years later, I no longer blame anyone other than the situation. But without having Mattie's thoughts, words, and feelings, we had to come up with how to memorialize Mattie on our own. 

Mattie did a lot of creating in his lifetime and I do think Mattie’s artwork is legacy work! But it most definitely wasn’t created to be of such. Which is why I challenge people to think about legacy making as a journey we are on together, building a life story when the child is alive. Rather than purposefully setting out to create or reflect on things that will mean something to us when our child is dead! That is contrived, especially with a young child who is dying.

From my perspective we didn’t go into any activity with the mindset that we were building legacy! We were building our life story together and helping Mattie deal and cope with a horrible diagnosis and treatment! At the end of the day, it was Peter and me who looked back at all our times together and realized Mattie didn’t need to record his wishes or even say them to us. We didn’t fail. Instead our road map is found within his art pieces, his Lego structures we built together, and sharing our lives as a family. Those memories serve as the foundation of his legacy.  

In a way legacy making and end of life care are one in the same to many people. But are they? I think a similar analogy is with palliative care, which gets lumped into end of life care. The only people who truly appreciate the differences between these two fields are those educated in them and those truly practicing the specialty of palliative care. In some ways I feel like clinicians want to check the box and say "yes" I helped the family with legacy making, but in all reality, legacy making may look different for each child and each family. So being prescriptive with tasks and activities around this may not be helpful! 

There needs to be a mindset CHANGE! As families work with children, they are capturing their daily thoughts and feelings, but NOT as something tangible for end of life and a legacy. Certainly, it could be appreciated that way if the child does die, but given that none of us holds a crystal ball, we can't determine who is going to survive and who will not. Therefore, capturing stories, living one's life to the fullest, is the best way possible to build legacy. In looking at how Mattie led his life, we then uncovered his legacy. To me legacy making (for at least a dying child) is about the LIVING and isn't necessarily beneficial for the dying child. Mattie's legacy I believe wouldn't mean that much to him, from his 7-year-old perspective, but as his mom, it means a WHOLE LOT to me. 

Saturday, September 16, 2023

Saturday, September 16, 2023

Tonight's picture was taken in September of 2008. That day, Peter's colleagues in Peru sent Mattie a special song they wrote for him. It was called, "my little child." I can still hear it in my mind! Mattie loved it too and was swaying and dancing to the music. I snapped several photos of Mattie in action and passed this along to the team in Peru. Back then, Mattie had support from friends practically all over the world. There was not much that was positive about that point in time, other than witnessing the beauty of a community coming together around the cancer diagnosis of my 6 year old son. That was extraordinary. 

Quote of the day: Grief is like a moving river, it's always changing. I would say in some ways it just gets worse. It's just that the more time that passes, the more you miss someone. ~ Michelle Williams

The other day I came across a charming story about Scout the dog. The title of the article was, Dog repeatedly escapes animal shelter, sneaks into nursing home, is adopted by residents. I am always fascinated by how perspective, sensitive, and loving dogs can be! Here is a link to the article, if you wish to read about Scout:

https://www.usatoday.com/story/life/animalkind/2023/08/31/dog-shelter-michigan/70725971007/

Basically Scout is a mutt and was living at a shelter in Michigan. For three nights, he escaped the shelter and walked in and slept in the lobby of a nursing home. Keep in mind to do this, that meant that he had to scale a 10-foot chain-link fence, then a 6-foot solid privacy fence, cross a highway without getting run over, and then enter the front door of the nursing home unnoticed. Scout then jumped onto the facility's couch as before and made himself at home for the night. Each time the nursing home sent Scout back to the shelter. However, Scout did this feat NOT just once but three times! At that point, the staff had a meeting and they decided it was a sign.... they had to adopt Scout. 

Like with many rescues, it is hard to determine WHO SAVED WHO! Scout has become a vital therapeutic tool within the facility. Residents feel like Scout's presence remind them more of what it was like living in a home, rather than a facility! As most facilities do not allow pets. 

Scout was an abused dog. The shelter felt he had many of the tell tale signs, particularly that he doesn't like loud noises and he becomes fearful around people he doesn't know. Scout clearly loves to be needed and has become the unofficial protector of the residents. He is even perceptive to know when residents are dying. He won't leave their sides, and is there as a source of comfort. What a dog!

Scout was even awarded the "resident of the month." 

I absolutely love the quote which says, "dogs have a way of finding people who need them and filing an emptiness we didn't ever know we had."

In a world that sometimes seems unstable, too hectic, chaotic, and people around us maybe uncaring, reading this story about Scout should bring a smile to your face. There is a special bond between a human and a dog, and I have experienced this first hand with Sunny. Sunny definitely entered our world at a vulnerable time, he continues to bring love and happiness to our household, and we rescued each other. 

Friday, September 15, 2023

Friday, September 15, 2023

Tonight's picture was taken in September of 2008. I will never forget this moment in time. We took Mattie to New York City to be evaluated by a well known oncologist and orthopedic surgeon. The surgeon kept us waiting for HOURS! Try over 4! It was very difficult keeping Mattie happy and contained during that time and the hospital system truly did not care! The surgeon was a piece of work too, as he told us he could only chat with us for five minutes because he had to run to a dinner. As if I cared about his dinner, especially after waiting for hours and making the journey from Washington, DC. The surgeon started talking about Mattie's condition, how his diagnosis was terminal and surgery should not be performed. I was so incensed by him, that I told him to STOP talking while I brought Mattie to the waiting area, as I did not feel this was appropriate dialogue for a six year old. My parents and lifetime friend, Karen, were in the waiting room fortunately because otherwise, I would have had to remove myself and Mattie from the conversation. To this day, I have NO USE for this big named cancer center or these physicians. They may have been right, Mattie was going to die, but their delivery and lack of compassion will never be forgotten. 

Quote of the day: A great soul serves everyone all the time. A great soul never dies. It brings us together again and again. ~ Maya Angelou

This morning was another show, in which I as unable to eat again. My dad had to jump up to the bathroom and after he was finished I had to take him to his memory care center. After dropping him off, I went to get gas for the car and drop off mail at the post office. Then I ran back home to herd my mom to the car. I told her we had to leave the house at 10:20am, in order for me to get her the salon in time, which is located in Washington, DC. The salon is about a 35 minute drive for me each way. When I walked into the house, she was playing around with her phone and did not look ready to leave. I told her the time and she got flustered. I asked her what she was doing and I could see she was trying to change her "google" password. Of which she doesn't have one to begin with! I grabbed the phone away from her because this is how she has gotten into trouble in the past! I have told her time and time again not to play with passwords or give out any information on-line. But it just doesn't compute with her. My mom got mad at me and I told her, if anyone should be mad it is me. I had to make breakfast, clean the first floor, make their bed, get my dad washed and dressed, downstairs for breakfast, start their laundry, toilet my dad and get him to his memory care center. Forgoing breakfast! That reality stopped her in her tracks. 

When I finally got to the salon, my mom headed back for a massage. My mom is convinced that she is asked to lie on her stomach, with her face down, when she gets a massage. She doesn't want to do this and told me to let the salon staff know. It turns out that the person giving her a massage NEVER puts her on her stomach and therefore my mom is complaining about something that doesn't actually happen. The salon owner and the staff understand what I am up against, and instead of challenging my mom, we just go with it and tell her that we received her feedback and that the service will accommodate her concerns. 

In any case, while my mom had her massage, I got my hair conditioned and cut. For almost two years now, I have not cared for my hair. Now that my hair stylist is back in Washington, DC I am trying to see her on a more regular basis. I can't tell you how wonderful it is to be parent-free for two hours! The salon gives me cappuccino and today they shared fresh figs from a staff member's tree! It felt like a little bit of Italy. I am very grateful that the salon owner understands the stresses of caregiving as she did this with both of her parents. It takes a caregiver to know another caregiver. Being cared for and given treats is deeply appreciated and I am so glad I changed back to this salon!

On another note, I heard something absolutely humorous on the radio today! The question is........... how often do you think of the Roman Empire? Well apparently men think of this quite often and this question has gone viral, shocking women!!! Check out this link, and maybe ask the men in your life this question! You too maybe surprised by the answer!!! 

https://www.yahoo.com/entertainment/men-honest-ndash-often-think-191226516.html?

Thursday, September 14, 2023

Thursday, September 14, 2023

Tonight's picture was taken in September of 2008. Mattie was in his second month of treatment. That day, his "girlfriend" Charlotte came to the hospital to visit. Keep in mind that both of these children were only 6 years old. Entering a pediatric intensive care unit is scary! Yet Charlotte did it often and endured many of Mattie's highs and lows. That day these friends sat in Mattie's bed and watched Scooby Doo together. Meanwhile, Tricia, Mattie's favorite HEM/ONC nurse was accessing Mattie's IV and was doing it in a way as to not interfere with their time together. Tricia's birthday is on Saturday, and in honor of an incredible nurse, I posted tonight's photo. 

Quote of the day: I miss the warmth of your gentle hug and the love I felt when my arms were wrapped around you. I miss seeing your beautiful smile and the sound of your voice saying my name. I miss hearing you say, ‘I love you’ and me saying, ‘I love you’ in return. ~ Millie P. Lorenz

I am at it with my dad again! He is itching all over again. He has no insect bites, but I now know what this means. The itchiness is internal, which in my mind means it is medication based. The doctor thought it was the antibiotics that he was on. My dad was taking antibiotics for two weeks because he had open wounds from scratching so much. So to counteract that reaction my dad took prednisone for five days. Now everything is out of his system except the diabetes medication, which is a relatively new addition. I felt right from the beginning that my dad was having a reaction to the diabetes medication and not the antibiotic, but frankly since both were added around the same time, I decided to follow the doctor's recommendation. However, I text messaged the doctor and asked him if we could try stopping the diabetes medication for a few days to see if there is a difference. In any case, today was the first day without being on the med, and guess what? I haven't seen my dad scratching! I am hoping this is a trend, because this is a vicious cycle. 

I would say overall that my dad is declining. His physical therapist sees what I am observing too. In fact, today she recommended that he go back to in-home PT, which is reimbursed through Medicare. She feels he would requalify for these services and that his rehab doctor would most likely agree. The reason she is recommending this, is my dad would get an addition day of physical therapy a week. Two private sessions a week, plus one reimbursed through Medicare. I am thinking about it, because I am well aware of my dad's level of exhaustion and am not sure that three sessions a week will be what he needs. 

Two highlights of my day today. This evening, after meeting all of my parents needs, I went for a six mile walk. When I start walking, part of me wants to turn right around and go back home. As I am chronically tired. But I push through that feelings and eventually feel better about having fresh air and seeing signs of nature. 

The other highlight of my day was receiving a beautiful and heartfelt card from my friend, Denise. Denise wanted to remind me that I am not alone, that my friends are still out there and care. Which was good to hear because given all I am dealing with, it is easy to feel alone and unsupported. As soon as I saw the sunflowers on this card, I knew immediately that words of support and compassion were going to be inside. Sunflowers are the ultimate symbol of Team Mattie, and ironically many members of this team, are still supporting me through this next phase of my life.  

Wednesday, September 13, 2023

Wednesday, September 13, 2023

Tonight's picture was taken in September of 2008. That day, Mattie was invited back to his preschool to have a playdate with his preschool friend Alex and many of his teachers at the school. This space served as a happy reminder to me of all the wonderful times Mattie had in preschool and the incredible friendships we made over those two years. 

Quote of the day: The weird, weird thing about devastating loss is that life actually goes on. When you're faced with a tragedy, a loss so huge that you have no idea how you can live through it, somehow, the world keeps turning, the seconds keep ticking. ~ James Patterson

It was an early morning for me today, as I was up and moving at 5:30am. Prior to my parents moving in, the notion of me getting up that early after Mattie died was unheard of. I have never been a morning person, but my parents naturally awake early. Of course for them once they are done with breakfast, they can rest. I on the other hand keep going and going. 

Our plumber was visiting our neighbor's house today. However, he came over to visit me before he headed over to the neighbor's house and then once he was done at her house, he came back to visit with me and my parents. I got to know this plumber when we first moved into the house. Since SO much was wrong with the house, Cody spent many days here, perhaps weeks, fixing things and bringing things back up to code. In any case, in the process we developed a friendship. He knows about what is going on with us and we know about his family and children. Like me, Cody loves sugar. Therefore when he comes over, I never let him leave without some treats for the road. In fact, Cody is the one who introduced his company to Mattie Miracle! He advocated for us there and we are very grateful for his support.

This morning I could tell that Cody wasn't himself. He looked tired and I asked him what was going on. He shared with me aspects of his life and then commented that he wished he was able to earn more and live a different life than the one he has. I listened and certainly understood. When we are going through difficult times, it is hard not to look at others and want what they have and perhaps be down on one's self. So I empathized, but then told him that he shouldn't compare himself to my neighbor or anyone else for that matter. We are all unique and within him I see many gifts, skills, and things that MONEY CAN'T BUY! His character and commitment to us as his customers tells me volumes about the special person that he is. After all, even when he isn't scheduled to come over and work with us, he will text message just to say hello and check in. To me, finding someone like Cody is very special, it isn't contrived, and at the end of the day, his character and commitment to his community are what makes him wealthy in a meaningful way. 

I took my mom to her physical therapy appointment today. In tow, I brought her hat and sunglasses, because the therapy session was going to take place outside, so she could practice walking on uneven surfaces. Legally the therapist has to bring another staff member with her when leaving the clinic. So we met Daniella today. Daniella is from Bolivia and in her country she was a rehabilitation physician. She is working on becoming a physician in the USA. In any case, during the session, I heard Daniella ask our PT whether my mom has been assessed and tested. I knew exactly what she was asking because I am sure this physician feels my mom has a neurological disease. Which she does, but refuses to accept and therefore refuses to start medication. In any case, it was fascinating to see my mom through someone else's new lens. In a way, I felt vindicated because I have been saying since 2021, that something is wrong. 

Tuesday, September 12, 2023

Tuesday, September 12, 2023 -- Mattie died 728 weeks ago today.

Tonight's picture was taken in September of 2008. Behind me was a pump, which was giving Mattie an infusion of a pre-med before chemotherapy. The goal was for Mattie to sit still while that was happening. I tried to rest, in hopes that Mattie would follow my lead, but as you can see, he was full of energy and had no intention of resting. The irony was that year, none of us got much sleep. Between living in a hospital and how Mattie was feeling, we were lucky if we got 3-4 hours of sleep a night. I truly don't know how we managed on such little sleep and then had to continue to make life and death decisions each day. 

Quote of the day: It's so curious; One can resist tears and 'behave' very well in the hardest hours of grief. But then someone makes you a friendly sign behind a window, or one notices that a flower that was in bud only yesterday has suddenly blossomed, or a letter slips from a drawer... and everything collapses. ~ Colette

Given that today is Tuesday, my dad doesn't typically go to his memory care center. He attends on Mondays, Wednesdays, and Fridays. However, I had made plans to meet with one of our researchers for lunch. I brought my mom along, but I did not think I could manage my dad. I felt guilty about this decision, until I experienced breakfast this morning. I had just brought my dad downstairs from being showered and dressed. I got him to the table and he was having cereal, without milk. Within minutes he was moving his chair away from the table and wanted to go to the bathroom. Of course by the time he got there, he already had a bowel movement. So I had to clean him up again and change him completely. Not to mention throw out trash and clean the bathroom. It was a full morning, and I hadn't even begun to eat breakfast. After this ordeal, I reflected and said to myself..... YOU MADE THE RIGHT DECISION (about lunch)!

In fact, my dad has absolutely NO interest in interacting with anyone and the reality is he wouldn't appreciate meeting this wonderful researcher, hearing our dialogue, or moving at our pace. I want so many things for him, but I constantly have to separate my needs for him from what he actually needs. It is very devastating seeing someone you love ravaged by dementia. His body may look the same but the father I knew is long gone. He was a CPA by training and if you ask him today anything to do with accounting, he has NO IDEA! I mean NONE. He can't recall most of his work, the art of working with numbers, and whatever paperwork my mom shows him, he is a complete blank. Which is why I oversee all financial decisions with my mom.

Today's lunch was a breath of fresh air. It was wonderful to have a meaningful conversation, to learn about the clinical work this researchers is doing, and to have a discussion about ways we can collaborate. Even my mom had a good time listening along. Of course this researcher is a quality individual, so connecting with her is easy. This researcher has been part of our journey since 2012! We met for lunch at a local restaurant that I take my mom to on a regular basis. Over time we have gotten to know Meredith, our favorite server there! Meredith is under 21, but a very thoughtful and meaningful individual. She was happy we brought a friend with us today and treated us all to dessert! Lovely no? It is the Meredith's of the world who  truly enable me not to lose faith and hope in my daily existence and in life in general.  

Monday, September 11, 2023

Monday, September 11, 2023

Tonight's picture was taken in September of 2008. Mattie was in his second month of treatment. We were home and as you can see Mattie was already on an IV and his buddy, Patches, was nearby. Patches was an amazing cat. I remember, prior to having Mattie, that I got sick with a terrible fever. It ranged from 101 to 103 degrees. My head was spinning and I was too out of it to move. I distinctly remember Patches jumping on the bed and staying with me until Peter came home from work. Which was why I coined the term "Nurse Patches!" Nurse Patches was on duty for Mattie too, until of course we had to board Patches at our vet for a year. This was necessary because we spent more time living in the hospital than at home, and I needed to make sure Patches was taken care, given her medication and provided appropriate attention. 

Quote of the day: How does it feel, to see a dying child? One does not feel at all for there is nothing in the mind to make sense of it. Nothing, but one's own death. ~ A.J. West

On the 22nd anniversary of 9/11, I certainly remember and will never forget where I was on that horrific day. I was home in Washington, DC and Peter was at work in Virginia. I was pregnant with Mattie and had my first OB/GYN appointment that day. Needless to say, that never happened. Instead, I was glued to the television and worried about how Peter was going to get home. I was also worried that we would be a target somehow as we lived so close to all the monuments in the city. Peter said the drive home was eerie as people were escaping the city on car and foot, and yet he was driving back in. It was a day never to be forgotten, nor will I ever forget the lives of thousands taken that day and families that are forever changed. 

As I was listening to the radio this morning, I heard from several people who were personally affected by 9/11. They expressed sadness over the fact that children and people born before 2001, have NO CONCEPT about the terror that took place on September 11th. Therefore, the anniversary of this tragedy has little to no significance to them. I listened and absorbed what was being said, and understood the heartache being expressed. Losing a loved one in a traumatic manner leaves a lasting hole in one's mind and spirit, and to some extent we expect the rest of the world to stop spinning and functioning because the loss is so profound for us. Certainly 9/11 has or should have large ramifications on all Americans, but first and foremost there needs to be love, compassion, and respect for the thousands of families who lives changed forever on that day. These lives and the courage of these individuals should NEVER be forgotten. 

I took my dad to his memory care center today and then drove my mom into the city to get her hair and nails done. We are now going to a salon closer to where I used to live in the city. This was a necessary change that I decided on a few months ago. Parking is much easier now and I don't have to worry about my mom tripping on Georgetown's uneven sidewalks. The salon we are going to now is more low key, not frenetic and I have known the owner for decades. Everyone there looks out for me and my mom, and frankly I need as much help and support as I can get. It was a day of a lot of driving and running around. I was going to cook dinner tonight, but then I decided..... why? There is only one of me and I am running myself into the ground. Therefore I decided to order food out and have it at home. I wouldn't have made that decision a few months ago, but I am trying to be more intentional now about my own needs. This doesn't come naturally to me, as my instinct is to always help and look out for others. As helping others is very meaningful to me, but I am well aware of my level of exhaustion and the consequences all of this is having on my physical and emotional state. 

Sunday, September 10, 2023

Sunday, September 10, 2023

Tonight's picture was taken in September of 2008. It maybe difficult to understand what you are looking at! Mattie was lying in his hospital bed and was miserable. He did not want to hear or see anyone. NOT an easy feat when living in a pediatric intensive care unit. When I tell you that people came into the room at ALL times of the day, some without knocking, I am NOT kidding. It was very unsettling at first, until we adjusted to life on the "inside." That day, we tried to set up a tent of blankets for Mattie to give him some privacy and security. But you can see from Mattie's face, he was very upset, scared, and not happy with this existence. 

Quote of the day: The single moment when I knew that I had to get busy and do more was around the death of my son. ~ Bobby Rush

Saturday night turned out to be a very difficult night as my mom started peppering me about things and then said (what drives me up the wall), "I should never have left California." To be specific, she said that she hates living here. Literally I felt like World War III broke out in my house and my dad had absolutely no idea what was going on. I wish I could buy my mom a plane ticket and have her visit Los Angeles, but she is no longer capable of logistics or managing herself safely. Of course she will not acknowledge or accept that reality! Any case, my mom stormed upstairs and left my dad sitting in his chair, and she did not come downstairs again. I asked my dad if he wanted to go to bed, but since it was only 8:30pm, he instead wanted to watch TV with me. Which I did, until I took him upstairs at 10pm. My point to all of this is I am NOT just balancing the physical issues and tasks associated with caregiving. NO, I am also absorbing a lot of emotional angst, hostility, and anger. Needless to say, it is very difficult for one human being. 

I tried to keep things even keeled today because I couldn't handle another day like yesterday. I took my parents out to brunch, as I do every Sunday. Though I had my dad use the bathroom before helping him into the car, I knew trouble was coming my way! While driving, I could see my dad making a grimace, which is the tell tale sign that a massive bowel movement is on the way. But of course I was driving and on a highway. As soon as I entered the restaurant, I escorted my dad to the ladies room to clean and change him. So the fun started early. The only beauty about dementia is my dad forgets things that have happened five minutes ago. I may remember the bathroom nightmare, but fortunately he doesn't. He carries on like nothing happened, which is a blessing. Because he feels no shame, disappointment, or disgust about his accidents. 

I am grateful to all our servers and the managers of the restaurants we visit. They all understand my dad's condition, and have no problem with me heading right into the ladies room with him. For the most part, most women have no issues with this either, though I have run into a few people who have given me a hard time in the restroom. For them, all I can say is I hope they age with grace and dignity and never need the help that I am providing my parents.