Thursday, July 17, 2025

Thursday, July 17, 2025

Tonight's picture was taken in July of 2004. Mattie was two years old. By that time, Mattie was acclimated to the sand and surf. A big difference from the year before, where we spent no time in the sand because Mattie disliked the feelings of the sand on his feet and he was deathly afraid of the ocean. But by two, Mattie discovered that he could build and create with sand! That he LOVED! To me summer always meant a trip to the beach. It saddens me that I will never be returning to these places again. 

Quote of the day: Life's under no obligation to give us what we expect. ~ Margaret Mitchell

We got to the hospital today for our family team meeting. In attendance was my dad's doctor, the case manager, the rehab coordinator, and another physician. Given that I experienced these lack luster meetings in 2022, I knew the team comes in and out of the room and there really isn't much dialogue or time to process things. In 2022, the meeting indicated that my dad was going to be discharged that week. Today, we learned that my dad won't be discharged until July 26. So this means he will be in the rehab a total of two weeks. 

Truly for me it is hard to keep it together, because people in my outside world think that the only thing I am coping with is caregiving! Little do they know that my husband left me, I got divorced, I am managing a house myself, caregiving for both of my parents around the clock, and running Mattie Miracle. That is just a synopsis that truly doesn't address the daily juggling act I perform. Not to mention the deep emotional wounds I live with on a daily basis. Some days, I can put all that hurt in a box and other days, when stressed out and overwhelmed, I am angry and will push back on the care team if they are not meeting my dad's needs. 

Today at the care team meeting, they warned me that by the time my dad is discharged he may not be able to walk up and down a flight of stairs. So they mentioned a stair lift! I love these crazy suggestions! I say crazy because one, stair lifts are NOT covered by insurance, and two, the average stair lift costs $5,000. How do I know this, because after having a hissy fit, I text messaged my neighbor who installed one a year ago for his dad. He gave me the 411 on stair lifts! Any case, I am dealing with so much, why not throw something else on my plate to manage. Overall, I HATE having to make all these decisions alone, to be the only adult on duty, and to not have the support of my spouse. I assure you I would NEVER have signed up to do 24/7 caregiving, without being married. Yet here I am. Which is why tonight's quote is so apropo... as life is under NO obligation at all to give us what we want or expect.

It is clear that my dad's doctor can see I am under great stress and distress. Of course he doesn't know the full picture of why, yet without knowing the full picture, he suggested I try counseling! Hysterical! Truly hysterical. I endured a year of counseling. It was ineffectual as I don't need anyone giving me atta girls or telling me.... wow look how much you are have learned and accomplished! My response is BIG DEAL! I didn't need many of the horrors I have experienced to illustrate my inner strength. Despite this being my own profession, I have faced once again that there are things in life that truly can't be fixed, solved, or made better. NO amount of therapy will change what has happened or how I am feeling. Losing Mattie and the manner in which I got divorced are so awful, that if I survive this, the only way for me to cope with all these thoughts and feelings is a little bit at a time. 

When I got home tonight, I found my grass being cut and the lawnmower running right into my backyard gate and taking it down. Seems about right for my life. So I had to take photos and send it to the company. Something I will have to deal with tomorrow. Certain my dad is where he needs to be now, because he doesn't have the strength to come home right now, but I have to say the daily visits back and forth to the hospital are very tiring. My mom and I spend five to six hours a day there. It is vital to keep my dad orientated to reality. Keep in mind that he has NO IDEA where he is, and most times thinks he is home. I have explained to him the time line of what has happened to him and repeat it every ten minutes. I have written some things down on his white board in the room, but tomorrow I am bringing in a July calendar so we can mark off days and include some information about his hospitalization. I am stunned that his therapists haven't done this in one of their sessions, but given my dad's confusion and frustration, I am addressing this ASAP. 

Wednesday, July 16, 2025

Wednesday, July 16, 2025

Tonight's picture was taken in July of 2005. Mattie was three years old. That week we took Mattie to Boston to visit my in-laws. We went on a strawberry picking adventure and "Farmer Brown" was in his element. Mattie absolutely LOVED IT! My mother-in-law raised two boys, so she knew how to keep Mattie engaged and moving. 

Quote of the day: Empaths did not come into this world to be victims, we came to be warriors. Be brave. Stay strong. We need all hands on deck. ~  Anthon St. Maarten

My morning routine looks very different now that my dad is in acute rehab. Typically I have to get up almost 90 minutes earlier to manage his shower, dressing, making the bed, and helping him with breakfast. So I have to say my dad being gone is a bit disorienting. 

This morning, my mom had physical therapy at home. Frankly I wasn't sure she could handle it. She is wiped out and even more wobbly on her feet this week since my dad has been hospitalized. While she was with her therapist, I went to return the bed rail I purchased for my dad's side of the bed and then I stopped at Lowe's and picked up "New Jack." 

In 2009, after Mattie died, my friends gave me a beautiful rubber tree fig, who I nicknamed, "Jack," for Jack in the beanstalk. When I first received Jack, he was about the same height you see with New Jack! Over the last 16 years, Jack grew over 5 feet tall. However, about a week ago, it dropped all its leaves and died (seems like a trend in my life). There was nothing I could do to resuscitate it! So this morning, I planted "New Jack!" There is something special about a rubber fig tree! They remind me of the beauty of the tropics. 

We got to the hospital today around 1pm and stayed until 6pm. I had the opportunity to meet my dad's physical therapist and attend one of his sessions. I got to see for myself if he could stand, walk, and do steps. Standing was challenging, walking was good but labored, and stairs did not look good at all. As the therapist said.... he is where he needs to be and there are goals for him. 

While I was in the therapy session, in walked Jennifer. Jennifer is the director of the rehab. I met her back in 2022, when my dad had a pacemaker placement. After one week in the hospital, my dad couldn't move from bed. The hospital wanted to discharge him to a nursing home. I wasn't having any of that, and networked my way around the hospital, until I discovered that the hospital had an acute rehab and I got connected to Jennifer. Jennifer was able to stop my dad's discharge until a bed was ready in her acute care. That may not sound like a big deal, but it was HUGE. Huge, because that one decision changed the course of my dad's future. He was given the intensive therapies he needed so he could come back and live with me. When Jennifer walked into the therapy room today, she came specifically to see me. There was no hand shaking, but hugs. That is how grateful I am to this woman! As she said to me today... "we are exactly the same, we both advocate fiercely for the ones we love." Refreshing that someone gets me, because typically I can be viewed as a problem. A problem because when I know what my dad needs, I DO NOT back down. I am like a bulldog, and those who eventually get to know me, land up respecting me for both the care I provide my dad and for having the courage to take on a dysfunctional healthcare system regulated by insurers! As Jennifer said... "your dad looks as good as he does at 90 because of you." Her feedback meant the world to me today, because there is nothing I wouldn't do for those I love. 

Tuesday, July 15, 2025

Tuesday, July 15, 2025 -- Mattie died 803 weeks ago today.

Tonight's picture was taken on July 15, 2007. How do I know the exact date? Because those burgundy and blue goblets came out ONLY on our anniversary (July 15th). My paternal grandparents were also married on July 15 (obviously many decades before me), and these wine goblets were given to them at their wedding. When they died, my uncle gave them to us. It was our tradition to pull them out to commemorate our anniversary. If you notice, even Patches, our cat, was part of our special day!

Quote of the day: It takes strength to face our sadness and to grieve and to let our grief and our anger flow in tears when they need to. It takes strength to talk about our feelings and to reach out for help and comfort when we need it. ~ Fred Rogers

Today was my 30th wedding anniversary. My first anniversary since the divorce. The traditional gift to mark this milestone is the pearl! There were no pearls, no gifts, and no cards. It is as if the day never happened, it has been erased. I heard from my maid of honor and one of my bridesmaids, and my mother in law wrote to me bright and early and she sent me flowers. As she wanted me to know that I am special and never forgotten. 

My mom and me right before my Roman Catholic wedding ceremony. Of course neither of my parents knew what today was and there is no point to discuss it with them as we are all deeply saddened. How can a beautiful day in 1995, turn out to amount to such great loss, betrayal and abandonment? 

Making a commitment before God, family, and friends means something to me. It is a lifelong commitment and my brain can not compute any of this nightmare. I have no other words right now, or at least none that I care to put in print. 

Today was my dad's first day in rehab. As you can see from his calendar, he was up bright and early. By the time I got to him, around 1:30pm, he was luggage. I found him resting in bed and he had no recollection of any of the sessions he did today! 

This is my dad's schedule tomorrow and we have a family team meeting on Thursday. At which point, I will hear their plan, which I am sure will entail a discharge date! My mom and I got home at 7:30pm, and the bed rail I ordered for my dad arrived. After a full day, I had to pull it out of the box and figure out how to assemble it. I am the jack of all trades. 

Any case, after an hour of putting it together and attaching it to the bed, I HATED IT! I thought it was flimsy and actually the sliding bar wasn't long enough and definitely wouldn't prevent my dad from getting out of bed. So that meant I had to disassemble this bloody thing and get it back in the box. Which proved to be worse than trying to assemble it. But I did it and back it goes tomorrow. It is in all these stressful moments, I can't help but reflect...... who would hate me so much to leave me managing the impossible? 

Monday, July 14, 2025

Monday, July 14, 2025

Tonight's picture was taken in July of 2002. Mattie was three months old. By that point I already nicknamed him Mattie Moo! So our family's unofficial name for this photo was Mom and Moo! I am not kidding, if you go to our electronic folder, this is how this photo is classified! 

Quote of the day: I’m gettin’ tired way past where sleep rests me. ~ John Steinbeck

Literally tonight, I am writing in bullet points! Why? Because I have been at the hospital today from 11am to 9:30pm. I am worn out on every level!

• I herded my mom to the hospital this morning. I wanted to get there by 10am, but mornings are not my mom's thing. I literally packed up her breakfast to have in the car and told her we had to get to the hospital before my dad's physical therapy assessment. 
• Keep in mind that the hospital wanted to discharge my dad on Sunday. I advocated for that NOT to happen, particularly because no one saw my dad get out of bed and walk. If he could not safely do those things, I wasn't taking him home, because he would fall again. 
• When we arrived at my dad's room, we found he had a bowel movement and was sitting in it. While addressing this, Beth, the physical therapist, arrived. Therapists will say they DO NOT control where the patient goes (discharge or to rehab), but that is NOT true. Their recommendations drive the decision. 
• Any case, I made it clear to Beth what had transpired at the hospital since July 9, and that I blamed the hospital for my dad falling at home. Beth listened and did a great evaluation of my dad. When I asked her what the plan was, because I knew the hospital was going to discharge him today.... she looked at me and said.... YOUR DAD IS GOING NO WHERE! He is NOT safe for discharge! I told her I wanted to kiss her! It was the first person who saw exactly what I was reporting! 
• The entire team understood that I wanted my dad to get into the hospital's acute rehab program! Truly this is the only facility I will leave him in, because it is connected to the hospital and my dad's rehab physician runs this program. 
• In the middle of managing my dad's care and multiple health care team visits, I also met several people who represent hospital leadership. They received my grievance and I have been told the letter has gone far up the leadership chain and a formal investigation is now underway. I was interviewed (round one) for this grievance today. 
• By 2:30pm, I went down to the hospital's cafe to purchase lunch for my mom and me. While there, I ran into Althea! Who is Althea? She was the patient advocate in the ER back in 2022, when my dad was admitted for a pacemaker. Althea is younger than me, she is from South Africa, and she is truly an angel. She was so supportive to me and my mom back in 2022, I never forgot her. In fact, at that time she connected me with her boss, and her boss is now the director of nursing at the hospital. Someone I remain connected with, who truly is motivated to provide outstanding patient care. 
• Althea did not remember me, but I told her what a difference she made to my life. She was so touched by our conversation, she actually came up to my dad's room and spoke to all three of us for 90 minutes. She is working on getting a certification on mindfulness and hopes to help first responders. Naturally we got into discussing mental health and traumas. 
• At 7pm, we transferred my dad into the hospital's acute rehab. The last time my dad was admitted to that program was in 2022. So it is not new to me, and of course we know the director of the program, which gives me peace of mind. My dad is exactly where he needs to be and my focus is to try to get rest, because I am close to not being able to function. 
• Of course in the midst of this, I always ask myself, how could my husband not be here to help and support me? I have no answers! Tomorrow, July 15, would have been our 30th wedding anniversary, and it would have marked 37 years together (dating and marriage). 37 YEARS! Not 37 months, not 37 week, not 37 days.... BUT YEARS!!!!!!!!!!!!!!

Sunday, July 13, 2025

Sunday, July 13, 2025

Tonight's picture was taken in July of 2007. Mattie was five years old and doing one of his favorite activities... bath time. When Mattie was a toddler, he hated water, and bathing him was painful. But by the time he was a preschooler, there was a transformation. I am not sure he loved bath time per se, but what he loved was playing with his cars and toys in the tub. His creativity would unfold in the water! This photo was classic Santa Mattie. He would give himself a Santa beard out of bubbles! 

Quote of the day: Words are tears that have been written down. Tears are words that need to be shed. Without them, joy loses all its brilliance and sadness has no end. ~ Paulo Coelho

I could not get out of bed this morning. I think I finally got myself up at 8:45am! Unheard of in my house! Even Indie did not wake me up. Of course my mom got up early for some reason and was waiting for breakfast to be made. During my morning routine, I got a phone call from a nurse practitioner at the hospital. She basically said my dad was ready for discharge! Seriously this woman had no idea what she unleashed. I basically told her that unless my dad gets out of bed and we assess if he can stand and walk, I am NOT taking him home! There are no physical therapy evaluations over the weekend, so she was stuck waiting until Monday. But I told her, I would see her at the hospital when I got there and we would discuss this more! I did meet with her and she turned out to be a lovely woman. I explained to her that my anger was not really directed at her but to the system. A system which can't wait to push out patients, whether they are ready to go home or not! She understood. So tomorrow I await a visit from the physical therapist and my dad's rehab doctor. But I am prepared for my dad to be discharged and as always I am going to have to figure this out alone. 

I told the nurse practitioner that I watch my dad throughout the day, but at night, I am not in my parent's bedroom. So in order to keep my dad safe and in bed, I have purchased a full side bed rail. This rail will prevent him from getting out of bed, until I am there and can safely monitor him. He won't like this change, but safety has to come first and I can't rely on my mom to oversee his evening care. 

When I first arrived and went to my dad's room today, his nurse greeted me and handed me and my mom gowns and masks, because they have put my dad on contact isolation. My dad has a virus. He has had a virus since admitted to the hospital, but just today, they decided to classify him as having contact isolation. When Mattie had cancer, there were many times, he had contact isolation. Therefore gowns and masks were required. I certainly understood why his healthcare team had to wear these things, as they were going in and out of patient rooms, and they did not want to spread whatever Mattie had to other patients. However, I never wore a mask and gown with Mattie. Our life was chaotic enough, Mattie felt very different already, he did not need to see his mom and dad in gowns and masks. Only to emphasize his illness! We never wore them! If I did not wear them with Mattie, you can rest assured I was not wearing them with my dad. I am not sure my dad's nurse ever had family members outright refuse her request, but I did it without batting an eyelash. Later in the day, this nurse came back into the room, and I could feel her level of respect for me, as she heard me dealing with the nurse practitioner and advocating for my dad! She also let me know how sweet and kind my dad is.... indeed! What is very clear about my dad is he was and always will be a family man!

Switching gears, for two days, I have been working on a formal letter of concern to send to the hospital's ER director. I finally finished it and sent it off tonight. It is below. Do note that I changed all the names of people and the hospital for this blog posting.................................................................................................

Dear XYZ,

Thank you for this opportunity to share my recent experiences in your emergency department. ABC is our medical home. We live outside the beltway, but we have purposefully chosen your hospital because of your high standards of care and your compassion for addressing patient and family concerns and needs. 

Our recent ER visit was deeply concerning and has given me pause about returning in the future. On Wednesday, July 9, I took my 90-year-old father to your ER. My dad lives with me, and I am his primary caregiver. My dad has Alzheimer’s, and I brought him to the ER because he had a 101 fever, chest congestion, a bad cough, and he was so lethargic that I had trouble getting him up to walk a couple of feet. Given that these symptoms came on quickly this week, I consulted my dad’s primary care physician by phone. He said it was important that I take my dad to the ER to rule out pneumonia. 

I have outlined below my concerns and timeline using bullet points. Overall, I believe my dad fell while at home on July 11 at 2am, because he was ill and he was discharged from the ER prematurely (July 10, at 4am) and against my wishes. If my dad had been admitted to the hospital on July 10, he would not have fallen at home, and his recovery would be more manageable. Now we are not only dealing with the symptoms he presented with on July 9, but we are also dealing with a fragile 90-year-old who has hurt his back (thankfully he did not break a bone), is in pain, and any movement causes him great discomfort. The fall was a major setback, and it was indeed preventable. 

July 9-10 

• My dad entered the ER on Wednesday, July 9 at 9pm.
• The ER was not busy, and we were brought back to Room 20 within 30 minutes of our arrival.
• Thankfully I have access to my dad’s patient portal, because I could easily follow along with tests being ordered and see results in real time. I am not sure what families do without portal access. I say this because it was hours before we met Dr. WOW, the ER physician. Note that we only met with her because I asked for her to come to our room as I wanted to hear from her about my dad’s condition. In previous ER visits, we were always introduced to the physician almost immediately. Since the ER was not busy that night, there was no reason Dr. WOW was not able to visit with us sooner. 
• Families come to the ER scared and concerned and with a 90-year-old even something minor can be a major health issue. In addition, it would be my hope that primary caregivers are considered valuable members of the healthcare team and therefore our observations are valued and taken into consideration. Not only did I not feel heard by Dr. WOW, but I also felt she had a condescending attitude, as she implied that having my dad admitted to the hospital would be committing insurance fraud. Who says this to a primary caregiver? Believe me, if my dad did not have to be in the hospital, I would not be at ABC. I took my dad to the hospital because he needed medical attention. Dr. WOW is all about the data, sticking to rigid admission criteria, and has therefore forgotten that patients are greater than their test results. The whole patient must be evaluated and considered when making sound medical decisions. 
• On July 10, at 4am, my dad was discharged from the ER because Dr. WOW felt my dad did not meet the criteria necessary for hospital admission. She had no regard for the fact that I did not feel able to care for my dad at home in his current depleted state. I was left to figure it out and I told her I had a feeling discharging him was a mistake and we would probably be right back in the ER. Our family and friends asked me…. Who would discharge a fragile 90-year-old at 4am? They are not medical professionals, but even they immediately saw the problem with such a decision. 
• Once we returned home, I monitored my dad’s vitals every four hours and shared this information with my dad’s primary care physician. 
• On Thursday, July 10, I had the opportunity to talk with my dad’s primary care physician. He gained access to all the ER assessments, reviewed them, and shared my concern about being prematurely discharged. He felt that there was enough evidence to merit a hospital admission. But then again, this physician evaluates the WHOLE patient, not just the data. 

July 11

• At 2am, my dad fell trying to get out of bed to go to the bathroom. 
• After calling 911, six paramedics arrived and helped me get my dad off the floor, down the stairs, and into an ambulance. They wanted to take my dad to another hospital system. However, I refused that option. I wanted my dad back at ABC for two reasons. First, my dad endured extensive testing on July 9 and 10 at ABC and I did not want him to have to go through this again at another health system. Second, I believe it was important for your ER to see firsthand that it was the wrong decision to discharge my dad on July 10. My dad was clearly physically depleted, weak, and unable to function. His symptoms came on acutely, he was not acting like himself, and they significantly impacted his physical abilities. 
• When we arrived at the hospital at 3am, I explained what had happened to the ER nurse, and I also told him that this time, we were not leaving your hospital until my dad was admitted. 
• We waited from 3am to 7:30am, when a change of shift occurred. The change of shift made all the difference in the world. We went from the D team to the A team. The health care team was listening to our concerns, and Jay (our nurse) could hear how distraught we were, so he sent in Jasmin and then Chrissy to talk with me about my experiences. Chrissy promised that an investigation would be carried out, but I wanted to put these issues in writing. 
• My dad was admitted to Room 505 on Friday at 3pm and remained in the hospital over the weekend. 

In addition, I wanted to share my observations of listening to and enduring another patient’s issues while in ER room 20. On July 9, there was a young adult who was in a hallway bed right outside my dad’s room. She was clearly going through withdrawal from drugs. She was agitated, crying, hysterical, demanding drugs, and wandering around. I found this so upsetting as I did not know who to focus on first, my dad or what was going on in the hallway. I have no doubt other patients and families were facing vicarious trauma from listening to this for hours. Naturally patients addicted to substances need compassionate care, but this care needs to be in a different location within the ER, where other patients do not feel threatened by what is happening outside their ER room. I experienced this same issue during our April 2025 ER visit, but this time the issue seemed ten times worse.

In closing, I would like to hear how this information will be relayed to Dr. WOW and all your ER physicians. Patients and families come to you for help. No one knows their loved one better than their family, and the insights and concerns of family caregivers must be considered when making healthcare decisions. Older adults are the foundation of our society, and I expect the healthcare institution that I choose to care for my parents to value this greater generation and partner with me to ensure not only their medical health but their overall quality of life. 

The medical data may indicate one thing, but even a minor virus can be deadly for an older adult and their well-being and safety to return to the community should be part of any ER assessment. There was no regard for my dad’s safety or my own when he was discharged on July 10 at 4am. Many thanks for your time and attention to my letter. I look forward to hearing from you about my concerns. 

Saturday, July 12, 2025

Saturday, July 12, 2025

Tonight's picture was taken in July of 2007. Mattie was five years old. That week, we took Mattie to Boston to visit my in-laws. It was in their garden that Mattie was introduced to chipmunks. He absolutely loved them and nicknamed one, "Chippy." In fact, when Mattie entered kindergarten the children were engaged in a "writer's workshop," where they would pick a topic of their choosing and try to form sentences on paper. The teacher even encouraged the children to bring in a photo of what they were writing about. Sure enough, Mattie's first story was about "Chippy" the chipmunk! Of course all chipmunks I see now remind me of this sweet encounter with Chippy!

Quote of the day: The walls we build around us to keep sadness out also keep out the joy. ~ Jim Rohn

When I saw this quote tonight, I sincerely laughed. I laughed because walls are built up to protect ourselves and I frankly think if we are meant to find joy (if it even exists), then it will happen, walls or no walls.

I literally got into bed last night and fell asleep within minutes. I am that exhausted from two nights in the ER and getting my dad admitted to the hospital. Of course, Indie woke me up at 6:30am wanting breakfast. But right after I fed her, I returned to bed. I got up at 8am, and felt a little more normal, but I am chronically exhausted and every muscle aches. 

This morning, I was able to manage the laundry, cleaning up around the house, packing things for the hospital, calling my dad's nurse and getting a status report, and then I took my mom to the hospital to visit my dad. When I entered his room, he was sleeping. I am always in clean up mode, so I literally cleaned up debris all over the room, on his bed, and then turned my attention to my dad and his hygiene. His nurses never removed the undershirt and pajama top he came to the hospital in on Friday. Given that my dad looked and smelled like a mess, I worked hard at removing these items of clothing and then gave him a sponge bath, brushed his teeth, and shaved him. He looked a lot better after I finished with him. His nurse was a man today. When he came into the room and saw me doing all this work, he seemed shocked. Not sure what he is shocked about, as I am doing what any family caregiver does each and every day! But given the health care system's reaction to my tasks, it gives me the insight that they see many people who do not have family member attention. 

What I also determined was the nursing staff were not giving my dad Tylenol and cough meds around the clock. The orders were given as needed. I explained to the nursing staff ONCE again that my dad is not competent enough to know what he needs, so I had them change the orders to every 4-6 hours. Truthfully what happens in the hospital if you don't have an advocate? 

I think my overall concern is that I do not see my dad getting better. He is still congested, has no energy, sleeps the day away, and now to add insult to injury has a severe back injury. It makes it hard to clean him, feed him, and even move pillows from his head. He is more fragile than ever. Of course over the weekend, physical therapists do not work, which means that my dad will be spending days in bed! Each day that he spends in bed is like weeks for you and me. It isn't good for his lungs and it most definitely depletes whatever physical strength he may have. So naturally I am growing more concerned because when Monday comes, I know they are going to be focused on discharge, but to me, my dad is leaving the hospital in a worse state than when I brought him to it on Wednesday, July 9. 

Friday, July 11, 2025

Friday, July 11, 2025

Tonight's picture was taken in July of 2008, weeks before Mattie was diagnosed with cancer. In this particular photo, Mattie was showing me that one of his teeth was loose. This was a very exciting event for Mattie. In fact, I bought Mattie a cute fairy tooth box in Florida, for him to place a tooth by his bedside. Mattie always wrote a note to the fairy and left it by the box. The note made certain requests, as he did not want money. Mattie wanted all sorts of things. One time he asked for a pasta necklace! Truly, you had to love him!

Quote of the day: Don't have doubt when things are done by faith. ~ While driving today, one of the churches I passed, had this quote out front. It spoke to me!

Just when I think life can't get any harder, I rise to the occasion. Recap, I took my dad to the ER on Wednesday night. After spending six hours there, despite my greatest efforts, the ER doctor felt my dad did not meet criteria for a hospital admission. I told her I highly disagreed with her and that sometimes she has to look beyond the data and listen to family reports! I am NOT the kind of person who is looking to run and dump my father in a hospital. I take him there, because I know something is seriously wrong with him. Any case, after she discharged us Thursday morning at 4am, I told her, that I had a feeling he would be back!

Sure enough, I was sleeping soundly this morning, when my bedroom door flung open and my mom was screaming at 2am. Apparently my dad got up to go to the bathroom, and while trying to get out of bed, he fell on the floor. She tried to get him up, but couldn't so she ran for me. Truthfully when she came in the room, I was dazed and confused. I jumped up, ran into their bedroom, and tried everything possible to get my dad upright and potentially to stand. Then I realized, STOP! I have no idea how injured he was. So I instructed my mom to get dressed quickly, because I had to call an ambulance. Before I called 911, I threw on clothes. If you know me.... then you know I can't start my day without making my bed, taking a shower, washing my hair, and putting on makeup! Today, I did none of these things. Seriously I go no where without make up on, and to me without it, I feel uncomfortable and not fully dressed. But there was no time for anything. 

While I was calling 911 and scrambling around frantically packing things for the hospital, I could hear that my mom started the shower and was beginning her morning routine. With no true understanding for the crisis at hand. I couldn't focus on her, because I was juggling my dad on the floor and packing! Within less than 10 minutes a team of 6 paramedics showed up at my doorstep. They were fantastic! They wanted to take my dad to our local hospital. I said no! I explained to them that we were just in the ER and I wanted to go back to that hospital. I wasn't going to take NO for an answer. When I reach the point of saying NO, trust me, you can't move me! I am laser focused and am going to get exactly what I am passionate about!

The paramedics assessed my dad and got him up and into this amazing chair. A stair chair! Do you see the gears on the back. They literally cling to the stairs and go down it like a gear on a track! They did not even make a scratch on my wood stairs. Truthfully it was awesome to see! They were grace under pressure! But here is the irony! I maybe an emotional person, but in a crisis, I am calm and a problem solver. I really never knew this about myself, until Mattie got sick. Thankfully I am like this because a lot of stress falls on my shoulders.

Once my dad was in the ambulance, I had to turn my attention to my mom. I had to explain to her that she had to get it together, this is not the time to do her regular morning routine. That I had to explain this was frustrating. But I knew I had to get to the hospital ASAP, because my dad can't explain anything for himself. Case in point, when they asked him why he was in the ER, his response was.... I have a runny nose! He did not remember being in the ER the night before or even falling today! The paramedics also traveled to the hospital with my dad's ID, and I was determined to find the ID immediately upon arrival. 

When we arrived at the ER at 3am, there wasn't much activity going on. Yet the woman at the front deck was helping another patient. I tried to be patient, but then I literally jumped in and told her, I need to get inside ASAP. 

When I got to my dad's room, he was disoriented and confused. I immediately pressed the nurse call light and wasn't waiting to be greeted. When the nurse came in, he had no idea what hit him. I told him what transpired the night before and I also said, because he wasn't admitted on Wednesday like he should have been, my dad fell, and I hold them accountable. I also told him, I do not care about their data, that I wasn't leaving that ER until my dad was admitted. 

Literally we waited around until 7:30am, when the change of shift happened. It was that point I met Jonathan, a nurse. Jonathan was listening to my mom and I talking and how distraught we were. Jonathan then introduced me to ER leadership, and once I explained our case, it was like I lit a fire under a bundle of wood. Things started to happen. 

We waited in the ER 12 hours, before being admitted into the hospital. Before being admitted, the hospitalist came to chat with us. He was a lovely and compassionate doctor, who understood our plight but also painted a sobering picture for me. He basically said that my dad has a virus. So there is no medical treatment for a virus, other than managing symptoms. Because of my dad's age, recovering from a virus could take weeks to a month. He also said this meant that his admission to the hospital will not solve his problem, as he can only stay a few days and this most likely will not cure his viral symptoms. On top of that, when my dad fell, he did not break anything, but he definitely has caused muscular damage. Even touching him, he starts screaming. I am not only dealing with a patient who is sick, physical exhausted, but now a patient who can't physically move without being in terrible pain. The fall compounded the issues! Therefore, the doctor is preparing me that my dad will need rehab care and most likely can't return home right away. All the things I do not want to hear. 

When all of this happens, I feel beyond devastated! I am devastated that I am facing countless crises without my husband, I am devastated that my husband wanted my parents to move in with us, and yet now I am the one managing these issues alone, and I am devastated seeing the demise of my father. 

There were two bright spots to the day. The man who transported us from the ER to the fifth floor unit, was a sheer delight. He was born in another country and discussed the opportunities America gave him, but then we also talked about the beauty and the challenges of the cell phone and how it regulates our lives. He was deeply impressed with my care of my parents and my decision to be a caregiver. That meant a lot to me. Then we were admitted to the fifth floor. I have been through MANY hospital admissions in my life, but this one was done by the A team. They were so thorough, so compassionate, and also provided a ray of hope. Each room on the fifth floor, has a TV playing with serene nature images and soothing music. I swear I thought I was entering a spa! I felt very at ease knowing that I was leaving my dad in their care. They did everything from exam his skin, learn about his situation and lifestyle, understand his dementia needs (that was a first for me!), and asked about what kinds of help he needs eating (also a first, no one has ever asked me this), and then the nurse said to my dad....  I hope one day that I have a daughter like yours who cares for me if I should have trouble remembering things. Her comment remains with me, because what she is expressing is my greatest fear, I lost Mattie and then I lost my husband..... the two people in my world who I thought would always be there for me. 

Any case, I am hoping my dad will remain in the hospital until Monday. I have arranged for the hospital's acute care facility (an intensive, inpatient program focused on helping individuals recover from serious illnesses, injuries, or surgeries) to evaluate my dad on Monday, but I am preparing myself for their denial, since they will view my dad as not highly functioning enough for their services, and then I have big decisions to make. But frankly, in the last two days, I have had four hours of sleep. I am exhausted, disillusioned, and deeply saddened by the countless losses I am facing.  

Thursday, July 10, 2025

Thursday, July 10, 2025

Tonight's picture was taken in July of 2008. Literally weeks before Mattie was diagnosed with cancer on July 23. That day we took him to Roosevelt Island. A favorite weekend spot of us to walk as a family. Literally we went to the Island in every season! Mattie did not mind the cold or the heat! No trip to the Island was ever complete without Mattie coming home with a piece of nature. It could be a rock, an acorn, a branch, or something he found while walking. I can't tell you the amazing collection of items we used to have outside our deck door in the city. It was filled with Mattie's findings and in essence a visual of our adventures together.  

Quote of the day: In a futile attempt to erase our past, we deprive the community of our healing gift. If we conceal our wounds out of fear and shame, our inner darkness can neither be illuminated nor become a light for others. ~ Brennan Manning

It was a long night in the emergency room with my dad. Thankfully it wasn't a busy night filled with patients, so literally within thirty minutes of checking in, we were escorted back to an ER room. However, as I entered the room, there was stuff all over the floor and the trash receptacle was NOT cleaned out from the previous patient. So I could see IVs and an emesis bucket in the trash. Truly not appealing and also not hygienic. My mom insisted on coming with me so before I could take my dad to the hospital, I had to pack snacks, hot cider for her, hot hands, a heating pad, and blankets, because she is always notoriously cold. When I arrived at the ER, it was a show. Because I had to get a wheelchair for my dad, I had my mom holding onto me, and I was carrying bags, blankets, and way too much. I almost had a melt down in the parking lot, even before entering the ER. But truly who cares if I have a meltdown? Instead, like any caregiver, you plow through it, because you have no other choice.

Typically in previous ER visits, and remember I was just there in April, when my dad had sepsis, we meet the ER doctor right away. Last night, I never met the doctor, until hours later, and that was only after I demanded to see her. I should have skipped that step because she was a nightmare. She and I were like water and oil. She had an attitude and was condescending! She is all about the data and could care less about my perspective and observations. After all, she may have and understand her data, but she doesn't know the patient like I do! 

She ran my dad through a chest Xray, then a chest CT scan, countless blood work, urine analysis, and so forth. First she was worried about a heart attack and then a pulmonary embolism. Which explains all the testing! I was primarily worried about pneumonia. Once the lungs were determined not to be filled with fluid, she then focused upon a urinary tract infection. However, she never put my dad on IV fluids, so how she thought she was going to collect urine was beyond me. So I had to advocate for IV fluids, then they did not understand that my dad was incontinent. Therefore if they wanted urine, they had to catharize him. Seriously it was like they never cared for a 90 year old before! I love when they start instructing my dad, no matter how many times I told them, he isn't an accurate reporter and can't track their conversation, they continued to go around me. That is when I truly was getting upset.

Now if that was the only nonsense I faced that would have been bad enough, but there was a young adult in the ER, stationed right outside my dad's room who was a drug addict. She was detoxing and it was horrific, painful, and VERY upsetting to hear. Not just for a few minutes, but hours. This girl was screaming, howling, pacing, and demanding drugs. I literally asked the healthcare team why they were not giving her a psych consult. One of them said to me..... this isn't a psych issue but a behavioral issue. That she was showing off to her family and vying for attention. Now there may have been 1/16th of truth to this, but truthfully it did not take a rocket scientist to understand that she was having withdrawal symptoms and you could hear her desperation! Where was the compassion for this patient and for ALL the other patients who were witnesses?

This reminded me of the vicarious trauma (secondary trauma) I endured when Mattie was in the hospital undergoing treatment. It wasn't just his journey I had to absorb, but I had to hear and witness countless other moments of suffering of other children! I will never forget the first week we were in the hospital. The whole experience was new to us and we were so worried about Mattie's first chemotherapy treatment. One night, the child in the next room died. The screaming, howling, and sobbing remains in my head and heart. The only way to drown it out was to put a pillow over my head. Last night's situation with this young girl transported me right back in time to that first week Mattie had chemotherapy. Trauma is an interesting thing, because you may face it and process it, but like a groove on a record, trauma gets ingrained within our DNA. 

My dad's medical data showed a high white blood cell count and blood and white blood cells in his urine. Not to mention he was running a fever, was very weak (so much so that I am now lifting him up from chairs and the commode -- and he isn't light), and extremely congested. Yet all that said, the ER doctor would not admit him to the hospital. Instead, she discharged us at 4am! A 90 year old discharged at 4am!!! My dad was so disoriented, it was ridiculous. What I have concluded, and I told her as much, is that she has NO respect or compassion for the family caregiver. She dismissed me and did not take the insight I have on my dad seriously, because I wouldn't be taking him to the hospital if me and his primary care doctor did not think it was merited. 

Between everything I have faced these past two years, having to split Mattie's ashes on Tuesday, and this total disrespect by a medical provider, I was NOT in a good mental state when I was driving home at 4am. First off, I am exhausted, but second, for two minutes, I thought my life is so miserable that I could drive off the road right now, end it all, and it would be done. Of course, that was a fleeting thought, as I had my parents in the car, and had to get them home safely. 

By the time I got home, and got my dad settled, and I did my evening chores, I went to bed at around 5:30am. However, I had an appointment this morning with Steve, the man who helps me with lights, irrigation, and other outdoor tasks at 8am. Which meant I got up at 7am. I have no idea how I am functioning today, especially since I had a full day of caregiving on my plate. 

Later in the morning, my dad's primary care doctor called me. I had been text messaging him all along, and showed him data on my dad's portal last night as it was coming in. Any case, he called today to tell me that he did not agree with the ER doctor's decision to discharge my dad. He said he had enough issues that merited hospitalization. Any case, I have been taking my dad's temperature, oxygen saturation level and heart rate throughout the day and sending it the doctor. 

The main highlight of my day was talking to Steve. When he arrived I asked him to help me with Jack. Who is Jack? Jack is the rubber fig tree you see in this photo. Jack is special to me. He was a tiny plant (like knee height) that was given to me by two of my friends right after Mattie died. That means I have been cultivating this tree for 16 years. Unfortunately to my dismay, Jack died. I tried everything to bring him back to health, but it just wasn't possible. Seems very symbolic of my life. I did not have the heart to remove Jack from this pot. So I literally rolled Jack to the front door and asked Steve to deal with it. He did and he cleaned out the pot for me. He said this gives me the opportunity to pick another tree of my choosing to honor Mattie. Before Steve left he said to me that he always loves visiting my property, because he can tell the time and attention I put on all the plantings. He said my gardens are beautiful and coming onto the property is like being transported to a tranquil and peaceful location. His feedback made me smile and I literally was clapping! Clapping because here I am one tiny person, taking on almost an acre of property single handedly. He is the third person this week who has called me either ONE STRONG WOMAN or SUPER WOMAN (which is what my dad's physical therapist calls me!).

Wednesday, July 9, 2025

Wednesday, July 9, 2025

Tonight's picture was taken in July of 2009. By that point in Mattie's treatment, chemotherapy was behind him, as well as his surgeries. He was only undergoing experimental treatment and the goal was to focus on physical therapy, so that Mattie could relearn to walk and return to school in the Fall of 2009. In this photo you can see Mattie working hard with Anna, his physical therapist. By this point, Mattie and Anna were good buddies as they had been working together for a year! Unfortunately about a month later, we learned Mattie's cancer had metastasized, and then on September 8th, Mattie died. To this day, I still can't get over how valiantly Mattie fought this disease and yet how quickly the disease spread only six weeks off of chemotherapy!

Quote of the day: Tears shed for another person are not a sign of weakness. They are a sign of a pure heart. ~ Jose N. Harris

It is 8:15pm, I am headed to the Emergency Room with my parents. My dad is very weak, congested, and has an 101 fever. His doctor told me to take him in right away! Keep me in your thoughts. 

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As I have mentioned previously on the blog, I hate opening up my mailbox! Why? Because there are usually countless bills that I need to juggle and process. Yesterday was no different. I opened up the box and found an unexpected medical bill for my mom. So I called the doctor's office and they explained to me that it is my mom's Medicare deductible. Fine, I understood that after she explained it, but then the office manager turned to my dad's medical bills! She proceeded to tell me that all his medical bills have been DENIED since December of 2024. It is JULY, and I am JUST HEARING ABOUT THIS NOW! 

The issue has to do with my dad's supplemental policies. He has one through his former employer and one through my mom's former employer. Somehow these two supplementals are fighting over who is his secondary provider and who is his tertiary provider. Now this is beyond hysterical because my dad has had Medicare and these two supplementals for decades! Why are we facing this issue NOW!? Any case, that led me to having to call both supplemental plans. That was two and half hours on the phone and what I am learning is we most likely will be getting back pay bills for perhaps the last five years. Because the secondary insurer is really the tertiary insurer and has paid MORE than they should have for my dad's care. Seriously it is mind numbing! NOT what I wanted to hear.

What I should mention is during this 2.5 hour nightmare, my cell phone was acting up. I could make calls, but NO ONE could hear me. Or they heard me intermittently! Which meant the call dropped and I had to call back again, and start the conversation all over again, with a new representative. I was so frustrated that I moved to my land line. Yes I still have a land line, and thank goodness I do, otherwise, I couldn't have made these calls. 

Fast forward to today. This morning, while juggling a meeting with one of the fellows who helps me maintain the outside of my house, my neighbor called me. She was in a panic! She couldn't make voice calls from her cell phone. The phone is very important to her. I asked her whether she has AT&T and the answer was YES! So I quickly deduced.... there has to be an outage. So I got on the AT&T portal and sure enough our area has a voice outage for the next 7 days. Which led me to call AT&T, because we all need access to making phone calls. The AT&T rep I spoke to was absolutely delightful. He confirmed the outage and then proceeded to educate me about Wi-Fi calling. I truly had no idea what he was talking about. I kept telling him.... yes I am connected to Wi-Fi, and he told me that is not the same thing as Wi-Fi calling. So he walked me through my cell phone settings and within minutes, he showed me how to turn on Wi-Fi calling. I learned Wi-Fi calling can be on indefinitely and that it serves as a booster to making and receiving all calls. But basically Wi-Fi calling does not rely on your mobile carrier's cell towers, Wi-Fi calling utilizes your existing Wi-Fi network to route calls and texts. He even stayed on the line with me, while I made a call to my neighbor to see if my phone was working. It did! He was a peach.

I then walked over to my neighbor's house and helped her connect to Wi-Fi calling on her phone. She was so thrilled to be able to make phone calls today, that I literally heard from her tonight to thank me for helping her! I told her I understand, the phone is not just about connecting to those we know, but it is also about safety and security!

I am ending with photos of my hibiscus plants. I have two of them. I bought them last spring in memory of my amazing dog, Sunny! To me the flowers are so SUNNY and happy. I take these plants in during the winner and back out in the spring. I thought I had killed them in the transfer back outside. But not only are they thriving, they are producing!!! 

Simply beautiful. In a sea of misery, I stop and look at this beauty, to restabilize. 

Tuesday, July 8, 2025

Tuesday, July 8, 2025 -- Mattie died 802 weeks ago today.

Tonight's picture was taken in July of 2009. Mattie was home between hospital stays and those days he worked on a Lego Taj Mahal! Truly it was an impressive undertaking! Look at that smile, so pleased with his accomplishment. To this day, I still have the top dome of the Taj Mahal in my office on display!

Quote of the day: Adversity reveals genius, prosperity conceals it. ~ Horace

Some days I am moving around and getting things done, and I may look like things are okay! But I assure you, even while looking okay, I always have this sickening feeling that THIS CAN'T BE MY LIFE! Almost like I am traveling around in a bubble, and sometimes I am inside the bubble and sometimes I am outside the bubble. I do much better inside the bubble, floating about, busy with chores. When I am outside the bubble, examining my life, then the reality of my existence hits me, and hard. 

For the past 37 years of my life, there were some constants and givens. My husband being the main one! It is how I understood the world and those within it. Now that I have lost my other half, it is like traveling around without the outer layer of my skin. It hurts, it is painful, and there is no clue when and if I will be able to survive this confusing and painful existence. 

Today did not help! As you can see, I put my Mattie in the car, seat belted him in the back seat, and headed to the funeral home. If you did not read last night's blog, then you are probably looking at this photo and saying.... WHAT ON EARTH IS VICKI TALKING ABOUT? After all, you don't see Mattie. I haven't lost it yet, I don't see Mattie either. But Mattie's ashes are housed in this beautiful marquetry music box from Italy. I had to take them to the funeral home today to split the ashes in half. I have no idea why I ever agreed to this legally, as this is counter to everything I hold dear. But I think while I was separated, I agreed to this because I never thought we would actually get divorced. I truly did not think this could ever happen, mainly because all my life, people have always appreciated and valued their connection with me. It NEVER dawned on me that the one person who supposedly loved me the most, actually didn't!

This morning after dropping my dad off at his memory care center, I drove to the funeral home. This is the home I connected with about a year ago, when I moved my parent's pre-funeral plans from California to this location. So when I had to split Mattie's ashes, I decided to call them for help! 

I met with one of the funeral directors today, and she took care of everything. I am so glad I had the original cremation paperwork from 2009, because that was actually needed! I did not discuss with her who these ashes belonged to or the circumstances. I figured, why bother?! It is not like she is going to be of any emotional help to me. I say this not as a reflection of the director, but because this is the emotional state I am in. Very little helps. No amount of talking helps, and seeing a way forward escapes me. 

While waiting for Rachel to split the ashes, this was my view. While sitting there, I could feel my level of anxiety rising. Fortunately I wasn't there very long!

Rachel made a copy of the original cremation certificate and put half of Mattie in this plastic urn. There was no charge for this service. 

Mattie is now it two different places.... a box and an urn. My good friend Mary Ann wrote to me last night and shared something that I found very helpful. She wrote, "God calls things that are not as though they are" (Romans 4:17). Which speaks to God's creative power and the nature of faith. So having faith, I believe that God can mysteriously bring together Mattie's ashes as though they never were separated. Thank you Mary Ann!

Whether I have all of Mattie's ashes or half of Mattie's ashes, that doesn't change the fact that I am Mattie's mom! I am Mattie's memory keeper, and I will continue to keep Mattie's legacy going by running his Foundation and helping other children and families like ours! JUST LIKE I HAVE BEEN DOING FOR THE LAST 16 YEARS!