Tuesday, August 13, 2024

Tuesday, August 13, 2024 -- Mattie died 775 weeks ago today.

Tonight's picture was taken in August of 2004. Mattie was two years old. We were visiting Los Angeles and Peter snapped this photo of me and Mattie with my parents. I look at this photo now and it seems like it could be of a different person. This didn't and doesn't seem like my life. I wouldn't have guessed that 20 years after this photo was taken, Mattie would have died, my dad would have moderate stage dementia, my mom would have Parkinson's and Peter would leave me. When I evaluate where I am now in life, it is beyond amazing what I cope with ALONE on any given day. 

Quote of the day: I have emotional motion sickness / Somebody roll the windows down / There are no words in the English Language / I could scream to drown you out. ~ Phoebe Bridgers

My good friend Mary Ann sent me this photo today. I am rarely on Facebook any more, for MANY reasons. So I appreciate Mary Ann forwarding me this posting and I remember this photo well. In 2017, I received this photo from Sunny's groomer, who absolutely LOVED Sunny. She used to call him her "Sunny Bunny!" Sunny was part of my life from 2016 to 2024, and I will never forget our moments together. He is missed deeply and since Sunny died in January of this year, I have yet to go for a walk in our neighborhood. I am not motivated at all without my boy. 

Today I took my parents to a meeting with a lawyer today. Since my dad has dementia and Peter left me, I have now become the all knowing one in my household. Mind you, I have had a steep learning curve, because prior to Peter leaving, I never paid a bill, balanced a check book, managed money, took care of a large household alone, fixed things that were broken, took on all the gardening and the list goes on. I have had to become the jack of all trades. It is hateful!

I assure you these are not roles I want or like, but out of necessity, I have to be the adult on duty. When faced with so many questions and problems, my natural instinct is to turn to Peter. I have had to learn over these last 11 months that he doesn't want to help me, he isn't interested in communicating, and wants no part of my life. So when I say I am ALONE, I mean it. What these 11 months have shown me is that I actually can do much more than my family ever gave me credit for. This isn't a claim to fame, and I rather not be in this position. At the end of the day, what I miss is having my life long companion, or to be able to turn to who I thought was my life long companion. Peter's abandonment has left an immense hole in my life and heart. 

This evening, I heard my mom talking on the phone to a friend. She was saying how well I am doing and how I will have my whole future in front of me. I will spare you the exact verbiage. I truly had to tune her out because she has no concept of the pain, hurt, betrayal, and loss that I feel. People are not replaceable in my world, and for me my life feels over. My future, as I imagined it to be (which wasn't easy to accept having any sort of future without Mattie in it) is gone. I realize I may have friends and family who want me to be happy and to see possibilities ahead, but I don't see it, I don't feel it, and I am just tired of it all. 

Tired of working around the clock, tired of putting out one crisis after the other, devastated that I invested 36 years with a person who wants nothing to do with me, and worn out from living with constant grief and trauma. 

Monday, August 12, 2024

Monday, August 12, 2024

Tonight's picture was taken in August of 2004. Mattie was two years old! I took him to Los Angeles that week, for his annual trip to see my parents. As you can see, Mattie found my sandals, decided to put them on and was clomping around the house! Got to love that smile and his spirit. I miss Mattie, his presence in my life, and no matter what I am going through, remembering his existence and honoring our bond and connection will always be my number one priority. 

Quote of the day: I don’t know how to say goodbye. I can’t think of any words. ~ Princess Ann, “Roman Holiday”

My mom showed me this image that she found on Facebook. I looked at it and absolutely related to it. We do talk about Sunny all the time. He was the world's best dog, my buddy, and amazing companion. He was loyal, faithful, and incredibly loving. It is hard to believe Sunny died in January. Seven months, and he has left a big hole in my life. In fact, my heart is on overload, that I am amazed it still beats. 

Tonight I went out to bring the garbage to the curb. While outside, a couple was out walking their dog. They came over to talk with me. Naturally I wanted to meet their pooch. The couple clearly knew my house, and toured it when there was an open house in 2021. They spoke specifically about aspects of my house, which caught my attention. They then commented on my neighbor, who is doing an extensive renovation. I had no comments. However, what caught my attention is this couple deemed that I should be very happy because of the house I own. You know the statement.... you can't judge a book by its cover? Again, I wasn't going to get into it with these two, because most people couldn't possibly know the hell I live with each day. 

But this couple is correct. When we bought our house together, the notion was this was going to be another chapter in our life together. For the life of me I would never have imagined what has happened to me and how my life is practically in ashes. I have crashed and burned and I don't see much hope for the future. 

Sunday, August 11, 2024

Sunday, August 11, 2024

Tonight's picture was taken in August of 2004. Mattie was two years old. Every August, I took Mattie to Los Angeles to visit with my parents. That day we went to Griffith Park, which was a park very close to my parent's home. They had all sorts of fun things at this park, from the Zoo, Travel Town (an amazing train museum), pony rides, train rides, and a Dentzel Carousel. I was very protective of Mattie and always wanted to make sure he was safe, and tried to plan for all contingencies. Of course childhood cancer was never on my radar scope and at that point in time, I was naive about that possibility. 

Quote of the day: My tongue will tell the anger of my heart, or else my heart, concealing it, will break. ~ William Shakespeare

This morning, after my usual routine, I decided to figure out how to operate Peter's hedge trimmer. I have seen Peter use it for years, but never used this gadget myself. I am very tired of seeing the hedges in front of our windows growing so tall and uneven. Could I pay for the gardener to do this? Sure! Do I want to? NO! As a home owner, I have found that you have to learn to be self sufficient because every thing costs an arm and a leg. 

I got the hedge trimmer out of the box and had to figure out how to assemble it. The instruction booklet was no longer with the machine. Here's the funny part, I couldn't figure out how to take off the safety blade cover. I tried moving it, sliding it, nothing was working. So I want back inside, got my phone and googled my question. Sure enough, I got instructions on-line and went back at this thing with a screw driver. I was able to slide the safety guard off and then decided to practice my skills on the bushes in the back of the house. After managing three of them, without killing myself or damaging the bushes, I headed to the front of the house. I went at two large hedges and four small bushes. I have found my new best handy side kick! I stopped after two hours because my arms hurt. But I have more to do and hopefully will get to it this week. Unless another crisis arises in my house. 

Every Sunday, I take my parents out to brunch. Over the years, we have gotten to know our server and all her family. Today she was talking with us about three of her colleagues who have approached her several times and want to go out on a date with her. These men are about 25 years younger than her. When she was telling me this story, we both looked at each other, and what came out of my mouth was...... what do they want, what is their motive? Instead of looking at the world as a hopeful, happy, and loving place, I have been transformed after the destruction of my marriage. This destruction and abandonment have left me having great caution, a lack of trust, the desire to retreat and shut people out, and the need for self protection. As I always say, I hate the person I am becoming, because it is not who I am at the core. Yet look what being kind, nice, loving, and supportive has gotten me after 36 years in a long term relationship! It has gotten me to a place in my life where I lost my child, my husband, my freedom to live a daily life, and a very uncertain future. 

Saturday, August 10, 2024

Saturday, August 10, 2024

Tonight's picture was taken in August of 2002. Mattie was four months old. We began introducing rice cereal into his diet and Mattie LOVED it! It almost looked like he was in a trance when eating. Very Zen! Today, I took my parents out to lunch. Right next to us was a family with a baby about the age of Mattie in this photo. How I remembered those days, when things seemed far more innocent, hopeful, and when there were incredible possibilities for a beautiful future together as a family.

Quote of the day: You can clutch the past so tightly to your chest that it leaves your arms too full to embrace the present. ~ Jan Glidewell

Tonight's quote got me thinking. I am VERY used to living and thinking in the past. I think it is a natural instinct, especially when your only child dies from cancer. A part of me will always live in the past, because if I don't, then I am left to face the notion that I am childless and without my husband. My brain wakes up and goes to bed DAILY trying to understand how on earth this has happened to me after our 36 years together? Truly there are no logical explanations, though I have several or one BIG one which I am not discussing on this blog. In fact, there are times I blame my caregiving role for the reason I took my time and attention away from Peter. Naturally blaming my caregiving role, means blaming my parents. However, as my good friend reminded me today.... what is happening now is NOT my FAULT. I have been a dedicated, loyal, faithful, loving, and supportive wife for 29 years of marriage, and seven years prior to that as Peter's girlfriend. No matter how busy I am now, does not excuse what is actually happening. Yet regardless of the reasons and circumstances, I am alone. 

There are days I just miss the husband, man, and best friend that I knew and loved. Today a workman came to the house to repair one of our systems. In the process of working together, I learned that he has been married for 32 years and has two children. He discussed how he works overtime and does whatever is necessary to ensure that his wife and kids have a good life. I couldn't help but try to apply what he was saying to my life. This is the type of man I thought I was married to, the person that respected and put me above everything else. As this is definitely how I felt about him. Needless to say, after this man left my house, my immediate thought was why are so many people blessed with stability and my life has been anything but stable?

I forgot to mention this on last night's blog, but yesterday in the process of juggling phone calls regarding my dad's urology issues, I got a call from a company called NSIGHT. They do remote patient monitoring. Turns out my parents' primary care doctor recommended my parents for the service. So a representative called me out of the blue. She caught me at a rotten time, as I was stressed, tired, and juggling way too much for one person. Any case, to make a long story short, the program rep told me that to be enrolled in NSIGHT, I would need to take my parents blood pressure and measure their pulse ox daily and report in! Truly I LOST IT. I told her I have enough going on, so NO I am not going to be taking vitals, and then report into her service. First off, my house is not a hospital. I will take my parents' vitals when I deem it necessary, but I will not stress them out with this sort of data collection on a daily basis. I then told this woman, if she would like to come to my home, help me and capture the data daily, she is welcomed to do that, but my plate is full!  

While out with my parents today, the restaurant played a Christopher Cross song. "Never be the same again!" (BELOW!) If you grew up in the 80s, then you absolutely know who Christopher Cross is and as I was listening to the song, I felt like it could have been written for me. Totally relate to it as I will never be the same again and I loved Peter then and will always love the Peter I once knew forever.

Friday, August 9, 2024

Friday, August 9, 2024

Tonight's picture was taken in August of 2008. This was Mattie's first week in the hospital. We got to meet Linda, Mattie's child life specialist that week, and I honestly do not know how I would have survived Mattie's journey without her. She was our everything and a fierce advocate for our family. That day, Linda set up a large roll of paper in the PICU hallway for Mattie to create and paint. Whatever Mattie created, usually had a sun incorporated in it, which is why it is no surprise that Mattie Miracle's logo is of the sun. 

Quote of the day: Until this moment, I had not realized that someone could break your heart twice, along the very same fault lines. ~ Jodi Picoult

I checked in with my dad's memory care center yesterday to confirm that they felt comfortable accepting him back today. My dad is stable, he just is chronically exhausted and is dealing with irritation from ureter stents. He literally wants to go to the bathroom every hour! Keep in mind my dad isn't that mobile and changing him on the hour is taxing. After the ordeal I have been through this week, I needed a break from managing my dad's care. I just felt like I was on overload. After dropping him off at the memory center, I went grocery shopping, and did other chores. I can get much more done when my parents are not in tow. 

When I got home, I received a call from a representative of the hospital who was basically following up on how things went for my dad while we was admitted. I gave her a mouthful. I told her about how disappointed I was throughout the process and that discharge was a nightmare. I then proceeded to tell her that I am unable to get a hold of my dad's urology office to discuss medical concerns and next steps. 

Whatever I told this woman, triggered a call from the scheduler of the urology office. Erika, the scheduler, was not expecting to be dealing with an irate family member. Turns out she was lovely and she was NOT happy with what I was reporting to her. I told her that this urology office is poorly managed and if their patients have a medical emergency they are going to die before actually getting through to a live member of the clinical staff. 

When my dad was discharged from the hospital, we never got paperwork from the urology office. So there was nothing specific about managing pain, or what to expect with stents. Having had kidney stones before, thankfully in this case, I know what is personally going on. If I did not have these insights, I would be clueless and in a panic. Since my dad left the hospital on Wednesday, I have been trying to get a hold of my doctor's nurse as well as schedule his lithotripsy procedure (which has to happen two weeks from hospital discharge, as the stents inside his ureters have to be replaced). 

I explained to Erika that two nurses have called me over the past two days and I have missed their calls. When I call right back, the only thing I can do is leave a message with the answering service. I never received a call back! I have been so frustrated that I have even tried leaving messages for the doctor through the portal. When I tell you that I have received no answers, other than.... we will call you, I want to scream. Erika was taking notes. She scheduled my dad for an outpatient lithotripsy procedure on August 21. We have to be there at 6:30am. Despite advocating there is no regard for the fact that my dad is 89 years old with dementia, and getting him to the hospital at that ungodly hour is horrible at best. If that was not bad enough, then the next part sent me right over the deep end. 

A nurse will not talk with me about my dad! They insist I have to bring my dad into the office for an appointment to be examined for the symptoms he is presenting. I literally lost it! I told Erika that this urology team had access to my dad for four days in the hospital, where were they?! I also wanted to know why they wouldn't give us a virtual appointment. The answer is they have to physically see him. Okay fine! Want to know when the first available appointment is? Try next Friday! Again, this is ludicrous. You have a patient dealing with issues and symptoms, and they expect me to manage this alone for a week! I frankly do not know how this office stays in business and hasn't received a lawsuit from patient negligence! Naturally I asked for the name of the office manager, as she needs to hear what is going on and I need some reassurances that patients and their family members have access to their medical providers. 

So I have this going on, and though I wanted a few minutes of peace while my dad was at his center, I did not find them. I was consumed with phone calls. In addition, to this chaos, my neighbor's non-stop renovation project continues on and today a dumpster was parked right in front of my house in the cul de sac. This apparently is against our HOA policy and this set neighbors off and they called the police on my neighbor. I missed this activity, but I mention this because there is no part of my life that is working well, that is tranquil, running smoothly, and is stable. 

Thursday, August 8, 2024

Thursday, August 8, 2024

Tonight's picture was taken in August of 2008. That weekend, Mattie's cousins from Boston came to visit. We left the hospital unit and went to the second floor outdoor space. This space was a God sent to us. It had a rose garden, benches, and plenty of places to sit and get fresh air. One of the places Mattie loved was the medical library. Not the library itself, but the rocks all around the building. In this photo, Mattie was showing his cousin one of the rocks. In fact, during the course of Mattie's cancer treatment, he landed up taking a big rock from this garden home with him. Normally I wouldn't have encouraged that, but the rock meant something to him. To this day, this rock is the doorstop for my bedroom. Every time I see it, I think of Mattie, his courageous cancer journey, and our time together. Just like this rock, our relationship was solid. 

Quote of the day: Never allow someone to be your priority while allowing yourself to be their option. ~  Mark Twain

Today seemed like a blur to me. I got up at 8am. I was too tired to move. When I got up, I found out from my mom that my dad was up and down all night long. Literally he is up to urinate on the hour. He does wear depends, but that doesn't stop him. When he gets up, it isn't a quiet process. He sleeps with 12 pillows, so any movement lands up throwing pillows on top of my mom. Because my dad has NO concept of time, he will get to the bathroom and then sit for an hour if you do not instruct him on next steps. So clearly my mom had a bad night and was exhausted this morning. 

While I was getting myself together, my phone rang. The home health company that we use, called me and they wanted to send a nurse over to evaluate my dad today. I was happy to comply. But that meant I had to speed up my morning process, because I had to make sure my dad was up, showered, dressed and had breakfast before the nurse came. I accomplished all those tasks, and even got my dad down the stairs. 

At some point, I had a missed call from my dad's urology practice. It was the nurse following up on how my dad is doing after hospital discharge. I literally called her right back and I couldn't get a hold of her. I then called back a second time later in the day, again, she never returned my call. I do not like the inattentiveness, especially with the care of an 89 year old. So tonight I sent the doctor a message through the portal. I am concerned regarding the frequency with which my dad wants to urinate. He is going almost every 30 minutes. In addition when not in the bathroom, my dad has spent the entire day sleeping. I wake him up periodically and have gotten him to walk a few times, but he is thoroughly out of it. 

I contacted his memory care center and asked them whether they would take him back on Friday. They have agreed to, and I am hoping some sort of stimulation will re-engage him. The nurse who visited today was absolutely lovely. She agreed that my dad's vitals are all stable and hopefully with rest and physical therapy, we can try to help him regain strength. But with my dad it is a full time job. He has no interest in movement, no interest in talking, no interest in doing much, other than sleeping. This is neither healthy nor good for him. 

Wednesday, August 7, 2024

Wednesday, August 7, 2024

Tonight's picture was taken on August 6, 2009. This is a day I will NEVER forget. The previous day, I learned that Mattie's cancer had metastasized. On the following day, we met with Mattie's oncologist to talk about end of life care. An absolutely horrific and heartbreaking conversation! You think we live in the 21st century, where we have access to all sorts of medications and treatments. Forget it! Cancer care is still lacking, especially for children. While Peter and I met with the oncologist, Mattie was being entertained by his therapists and Kathleen (one of his inpatient nurses) who came to the clinic to visit with Mattie. This photo was taken when Peter and I returned back to the clinic after our doctor consultation. As you can see, Mattie was studying our faces very closely because he knew something was up!

Quote of the day: When you are standing in [a] forest of sorrow, you cannot imagine that you could ever find your way to a better place. But if someone can assure you that they themselves have stood in that same place, and now have moved on, sometimes this will bring hope. ~ Elizabeth Gilbert

I appreciate the sentiment of tonight's quote, but I am too hurt to see the forest through the trees. I see very little hope. Since Sunday, I have been working very hard to manage my home, my mom, and my dad in the hospital. I have pulled 8-9 hour days in the hospital and I am exhausted. Mind you I started depleted. But I know how hospitals work. It is hard enough being cognitively intact and surviving a hospital visit. It is much worse for patients with dementia. I am quite certain if I wasn't so present and vocal, my dad would have been left unattended and in bed throughout his stay. 

When I arrived at the hospital this morning, his nurse, Paul, got my dad out of bed. He was already sitting in a chair when I got there, which was lovely. Way to go Paul! I think my assertiveness yesterday got the point across to his medical team, and that was, MY DAD MUST GET OUT OF BED daily. The longer my dad remained in bed, the harder it would be to get him mobilized and more independent. 

Though I fought a valiant effort, I could not get my dad into an acute rehab. They all felt that he was too high functioning. Which is hysterical, since his own hospital's acute rehab center felt that my dad did not have enough energy to manage three hours of therapy a day. So which is it..... too high functioning or too depleted?! 

Though we scheduled his discharge for noon today, I did not get him in the car until 3:30pm. It is the beauty of hospital time. The 3:30pm discharge also would not have happened if I did not ride the staff for two hours. I changed my dad into clothes myself and packed up the room. So I meant business.

When we got home, I told my dad that walking is crucial. So I got him to do five minutes of walking. 

After I got my dad settled, I did chores, made phone calls about follow up care, and then ordered food. I am very lucky to have some many wonderful friends who have given me gift cards to door dash! It is thanks to all of you, that we had a lovely dinner tonight. I just did not have the energy or wherewithal to cook. 

This evening, I will attempt to get my dad up the staircase. Thankfully his physical therapist is coming tomorrow morning and I will get her assessment. 

I am signing off this evening and feeling distraught. Somehow the house seems very lonely and I realize I do not have my other half to help, for support, and to assist me in managing the countless things I do each day. I would never leave even my worst enemy in such a fashion, and I am quite certain being a devoted wife for 29 years, I did not deserve this. 

Tuesday, August 6, 2024

Tuesday, August 6, 2024 -- Mattie died 775 weeks ago today.

Tonight's picture was taken on August 5, 2009. Mattie was participating in his outpatient physical therapy session. Earlier that day, he underwent a sonogram, only because I demanded testing of Mattie given the fact that he wasn't eating or drinking anything. I believed something was very wrong with him. The doctors didn't seem concerned because Mattie was only off of chemotherapy for six weeks. Any case, right before this session I got a call from one of Mattie's physicians letting me know that more extensive testing was needed as they found something on the sonogram. When I came back into this session, it took every ounce of energy I had to remain calm and present for Mattie. I learned the art form of bottling emotions and reactions back then, in order to effectively serve my role as Mattie's mom and fiercest advocate. 

Quote of the day: I wish I were a little girl again because skinned knees are easier to fix than a broken heart. ~ Julia Roberts

Another letter red day in my world. My phone rang at 9am and it was my dad's rehab doctor. Apparently he went in to assess my dad, in order to see if my dad would qualify to be transferred to the inpatient acute care center. The doctor said that my dad wouldn't qualify, but instead recommended that he go to a nursing home to get rehabilitation before returning home. I argued with the doctor on the phone, after all this doctor has a two year history with both of my parents. He sees them every six months. When I asked the doctor whether he got my dad up, out of bed, and if he saw him walk, you know the answer was NO! How do you assess a patient for rehabilitation care if they are lying in bed???? I have concluded that there has to be a Medicare reason why they are not accepting my dad. Meaning, Medicare must have some sort of criteria they need to see before they will pay for acute rehab care. The doctor and the staff today said my dad is being denied this rehab care because they don't feel he could tolerate three hours of therapy a day. Which is what happens in acute rehab. It is a very intense five day a week program with PT, OT, and speech therapy.  

I know about acute care quite well because in 2022, after my dad's pacemaker placement, he spent a week in acute rehab recovering and regaining strength. My dad was far more depleted in energy in 2022, and yet they accepted him to the acute rehab program back then. So this energy level line I have been given, I AM NOT buying it for a second. There must be medical data points that are used to qualify him, and perhaps his vitals and other data points are more stable than they were in 2022. But here is the thing.... patients are MUCH MORE than their data. My dad may look good on paper, but that doesn't tell you how he functions. All you have to do is get him out to bed to see that he needs support. 

The next problem is that in two weeks my dad will be undergoing lithotripsy to blast out kidney stones. One kidney is done at a time, so we are talking over a month of running back and forth to the hospital. My dad's physical therapists have told me that after a lithotripsy procedure he will not be allowed to do physical therapy. So we are talking over a month of not a lot of movement. This is another big concern, which is why the next two weeks are crucial to help my dad regain strength. I tried to explain this, I tried advocating my head off with everyone and anyone. I talked to patient advocacy, the case manager, the doctors, nurses, and even the assistant chief of nursing officer of the hospital. Honestly I am very frustrated and one thing is clear, not only does our healthcare system not care to treat the whole patient, they have little to no regard for the family caregiver. We are expendable to them. 

My mom and I got to the hospital around 11:30am. Of course I found my dad in bed and sleeping. I woke him up, pressed his call button, and in popped in Ida. A wonderful and compassionate nurse. I am sure it doesn't surprise you that I have a reputation on the floor already! 

Any case I pleaded my case with Ida. Even though my dad is listed in his chart as a "fall risk," and therefore needs to remain in bed unless physical therapists are present, I wanted him up, out of bed, and in a chair. I also wanted to see him use a commode. Ida made that happen. My dad sat upright for six hours today and was awake. We were at the hospital for over 8 hours and I am exhausted. Yet I have to mentally prepare that at noon tomorrow my dad will be discharged from the hospital. I refuse to send my dad to a nursing home, so he is being discharged and I am NOT following medical advice. A nursing home, for a person like my dad, would be a quick beginning to his end. So my plan is to take him home. The case manager told me if it truly is too much at home for me, then I can call her in a week, and she will help get my dad placed. Nice offer, but we shall see. May God give me strength. 

When I arrived home tonight at 7:30pm, I was met with thorough chaos in my street. Utility trucks were everywhere! My neighbor is doing an extensive renovation of her house, with no end in sight. We are going on over a year already of this nightmare! Several of my neighbors saw me arrive home, so they messaged me about the fact that gas and water lined were cut today. Beautiful.... chaos in every aspect of my life. 

Monday, August 5, 2024

Monday, August 5, 2024

Tonight's picture was taken on August 5, 2009. This is a day I will never forget, because on this day we learned that Mattie's cancer metastasized 6 weeks off of chemotherapy, making his diagnosis terminal. This was news that we never wanted to hear. There was no more treatment possible and instead of fighting, we had to switch gears and discuss end of life care and helping Mattie die with some sort of dignity. Which DID NOT HAPPEN. 

On this particular day, I fought to get Mattie an ultrasound and CT because his symptoms concerned me. In fact they concerned me for months, but doctors did not listen to me! Instead they kept telling me that Mattie's symptoms were psychological or he was manipulating me. In any case, between physical therapy and testing that day, Mattie and I went outside to the hospital rose garden to have lunch. Mattie posed by the art therapy elephant (a precious photo). Mattie was smart enough to know that something was going on and fed off of any reactions I had. We had a very tender time together in the rose garden and it will be a day etched forever in my mind. Mattie literally crawled onto my lap in the garden and asked me to tell the story of the day he was born. A story he loved to hear. It is hard to believe that Mattie was able to smile through any of this, but it was the beauty of Mattie which I will never forget. 

Quote of the day: There are many ways of breaking a heart. Stories were full of hearts broken by love, but what really broke a heart was taking away its dream — whatever that dream might be. ~ Pearl S. Buck

Today was another winner of a day! I went to bed at 5am this morning and woke up at 9am. I was completely dazed but I could hear my mom was already up and I know it is vital that we get to the hospital as soon as possible. Mornings however are not the best times for my mom, as she needs a lot of time to ease into the day. 

When we arrived at the hospital, my dad's room door was closed. The first thing I did not like! When I opened the door, he was in bed and out of it. We woke him up and as I approached him, I could smell him first. He was sitting in a huge pile of poop. Literally, and I have no idea for how long. My dad hasn't been out of bed for two days now, and is connected to an external catheter, which is quite an amazing device, as this thing is taped to him externally and it sucks up urine. In any case, I went flying out to the nurse's station and requested to talk to my dad's nurse, Angel. Seriously I did not make up this name. Unfortunately she didn't live up to the title! 

I explained to her what was going on and she snapped at me. I snapped right back. We both did not appreciate each other's attitude. I loved when she asked my dad.... didn't you know you needed to poop? Why didn't you press the call button? That is when I lost it! You just need to spend two minutes with my dad to realize, he isn't with the program, can't advocate for his needs, and better yet isn't aware when he has to go to the bathroom. This is one of the things I have noticed regarding Peter's abandonment of me, it has transformed the person I once was. I am now overly tired, strung out, because I am working around the clock, my fuse is short. 

As soon as we got my dad cleaned up, the medical resident walked in. It was a competition on who made my blood pressure rise higher today! He was so out of touch about my dad and his plan of care, that I let him have it too! This resident came in to tell me that my dad was being discharged today. I literally said to him.... I don't think so! I asked this doctor whether he had seen my dad get out of bed, use the toilet, or walk the hallway?! Of course the answer was NO! So I said, that my dad needed a physical therapy consult, because I knew my dad came to the hospital depleted, and sitting in a bed for two days straight is equivalent to a month for someone his age. Truthfully this resident did not know what hit him. He agreed to the consult.

Right after dealing with him, my phone rang. It was the case manager assigned to my dad. Her role is to work on my dad's discharge plan. I snapped at her too. How can there be a discharge plan without a full assessment of my dad's needs. I told her that my dad needed to be evaluated by physical therapy and that I believed he needed to be admitted to their acute rehab center, to regain strength and mobility. I learned of this center in 2022, when my dad was admitted for a pacemaker placement. Thank goodness I know the system, because I assure you the system doesn't work for the patient and has little to no interest in the burdens of the family. 

I made phone calls and sent emails today to the acute rehab center, and fortunately from 2022, I know the name, email and phone number of the director of the program. Thankfully she wrote me back tonight and her team is coming to evaluate my dad tomorrow. NOTE, these individuals have the ability to override the discharge. I learned this in 2022, and though mentally and cognitively it would be better for my dad to come home, I need to make sure he is safe to come home. Which means he needs to work on getting up from a bed, using the toilet, and negotiating stairs. We shall see what tomorrow holds, all I know is tonight, I am spent on every level.

As I was writing tonight's posting, I noticed that a reader was kind enough to write a comment (see below) to me on last night's posting. Chris is another wonderful person I have never met, yet we share the loss of a child and I am honored that my words, reflections, and journey means something to Chris. As I told Chris, this comment sparked something within my heart tonight. Thank you for reading, for your beautiful message, and valuing my role as a caregiver.  

God bless you. You are such a wonderful daughter and I pray that I will have someone who cares for me as much as you care for your parents when if I ever need it.. Or perhaps I will care for them so much so that I can make the decision to grant them their life and place myself in an assisted living facility. You are a gift to all you love. I understand you so. I am 72. My daughter Jillian passed away in 2010 from retroperitoneal synovial sarcoma. she was 20..We fought cancer for 4 years with many years spent living in the hospital per say.....there is no loss so great as that of our children. I somehow found you in 2010 and have followed you since. You have my thoughts and prayers daily. Chris.

Sunday, August 4, 2024

Sunday, August 4, 2024

Tonight's picture was taken in August of 2007. We were in Los Angeles visiting my parents. It was an August tradition! That day we went for lunch at a restaurant called Emilio's. Mattie loved the fountain on their terrace, as you can see by the big beaming smile. How I wish Mattie was with me now. I could use the support and would love such a fierce ally. 

Quote of the day: Heaven doesn’t ignore cries of a broken heart. ~ Toba Beta

It hasn't been a good day! It is 4:20am, and I have NOT gone to sleep! At 6:30pm on Sunday, I rushed my dad to the ER and he had emergency surgery at 2am!

I took my parents out to brunch today. Overall, I would say my dad has been struggling all week. My dad has been very lethargic, his appetite has been close to non-existent, and while at the restaurant my dad was having trouble walking. When I got him home, I took all his vitals. At rest, his pulse was over 100, his breathing was labored, and he was running an 101 fever. I gave him a COVID test and it was negative. I contacted his doctor and told him I was going to take my dad to the ER. 


NOTE: Our server gave me a belated happy birthday surprise today. She decorated, got me gifts, and the restaurant gave me a $50 gift card toward today's meal, and dessert! When I look at my photo, I can see just how tired I am.


I got my dad and mom to the emergency room by 7pm. My dad couldn't walk in, so I ran into the ER and asked for a wheelchair. No one helped me, so I had to bring the chair out and get my dad out of the car and into the facility. Mind you I was managing him, bags, blankets, drinks, and holding my mom's hand (as her balance is awful). When we got inside, we were asked to put masks on, and provide IDs. But then the fun began. I met a nurse tonight that I wanted to throttle. This male nurse was doing triage. He took my dad's vitals and from his perspective they were basically normal. He then started to ask my dad questions. If you ask my dad how he is feeling, his natural response is..... FINE! I told this nurse that my dad has dementia and therefore he needs to direct his questions to me. He basically told me to stand down! How I did not leap over the desk and grab him, showed remarkable strength. You know when someone looks at you with a dismissive attitude and basically deemed me as a daughter who was crying wolf. WOW was he wrong and I was RIGHT!

After awaiting about thirty minutes, a tech took my dad's blood in a room right next to the waiting area. She couldn't start an IV in his arm, and landed up going through my dad's hand. Any case within minutes she did a rapid test of my dad's blood and could see that his POCT Lactic Acid score was high, indicating some sort of infection. Back to the waiting area we went, until we were called back about an hour later into an ER room. The ER doctor was a peach! He gathered right away that my dad wasn't tracking him and that he had dementia. He treated me as part of the care team, and we both were on the same page. He ordered a chest and abdominal CT for my dad, a nebulizer treatment (as my dad had labored breathing), and started him on IV antibiotics and Tylenol. The doctor also asked me to catch my dad's urine, in order to run a urinalysis. The urinalysis showed he had a UTI. However, it did not end there. The CT scans revealed that my dad had large kidney stones blocking both of his ureters making it close to impossible to pass urine. So urine was backing up and if I did not catch this early, he would have gotten sepsis and potentially died. It was that life threatening! Thank goodness I followed my instinct, because when I care for someone (I get to know you VERY well), and I assess something is wrong, I am usually correct. 

In any case, at 2pm, I met my dad's urologist. He happened to be on call. He is the one who wanted to do the emergency stent insertion. Because of my dad's infection, they were unable to perform lithotripsy to blast out all the stones (and he has many). So once we stabilize him, I will have to take my dad back to the hospital for two more admissions, to get the stones addressed. We have a long road ahead, and I am so strung out right now, the thought of going to sleep isn't on my radar scope.