Friday, December 19, 2025

Friday, December 19, 2025

Tonight's picture was taken in December of 2006. Mattie was four years old. That day we went to the US Botanical Gardens. It was a December tradition, as the Gardens are beautifully decorated for the holidays and when you walk into the building, it almost feels like you are walking into the tropics! Which is a great feeling, when it is so cold, dark, and depressing outside! Mattie loved going to the Gardens (which are right next to Capitol Hill)! When I look at this photo now, it almost feels like I am peering into someone else's life.... as if I had a twin sister and this was her life, a life that I can no longer relate to in any way. 

Quote of the day: They say that time heals all wounds but all it’s done so far is give me more time to think about how much I miss you. ~ Elizabeth Wilder

It has been a crazy weather day! You know the kind of day that has almost every weather type.... warm, humid, frigid, blustery, sunny, and cloudy! I can't tell you how many times I picked up downed branches from the winds. The front yard looked like a branch war zone. I filled an entire garbage bin with just branches! My Christmas inflatable was blown feet from where it was, and I had to set it back up and tack it down appropriately! Despite the winds and cold weather, for the most part I enjoy being outside. It helps me clear my mind from what's going on inside. Both inside the house and inside my mind. 

My dad had another physical therapy session today. He gets four sessions a week. Two by his home health care agency, paid by Medicare Part A, and two from private therapists, which I pay out of pocket. So right now, my dad is working with three different therapists. Today's session was an hour long. She had my dad walk for 15 minutes consecutively and even had him go into the backyard and do more exercises. She is fantastic with him and she is the second therapist this week to let me know that my dad is doing great considering that he was bed bound for a week in the hospital. Today's therapist admitted that my dad is able to bounce back because I have him do activity daily and he has been doing physical therapy consistently since 2020! I swear by physical therapy and between their professional assistance and my daily care, I have concluded I made the right decision to discharge my dad from the hospital on Sunday! In fact, the movement and sitting with a heating pad have reduced his pain level significantly. 

I went out to get the mail today and found a package in my box from my friend Leslie. Leslie was my freshman year college roommate and I was her maid of honor at her wedding. When in college, I went to visit Leslie in Vermont! During our visit we went to the Ben & Jerry's factory. I am a big ice cream fan and don't get me started on Holstein Cows! I LOVE them! Which was why, Leslie sent me this adorable kitchen towel that says.... we wish you a Mooey Christmas! LOVE, LOVE, LOVE it!

This cow and the meaningful message that came with the cow brightened my day!

I promised to share more meaningful ornaments on my Christmas tree! I bought this ornament years ago! Which is ironic, because it wasn't until 2021, that we started decorating again after Mattie died. I bought the ornament, but did not use it until then! It says.... LOVE YOU TO THE MOON AND BACK! This was an expression I used to say to Mattie all the time! Now of course it is very symbolic, as whenever I see a moon in the night sky, I think of Mattie. 

My friend Ilona, made this beautiful Mattie Miracle ornament, for the Foundation's tenth anniversary! That year, I gifted these ornaments to my core volunteer committee! It is a beautiful ornament, created by a mom, who also lost her only child to cancer. 

Notice the cardinal!?? I love cardinals, as they also symbolize my Mattie. Whenever I see them flying around our backyard, I take it as Mattie's reminder to me that he is always with me. When I was a little girl, my grandmother always hung a red bird at the top of our tree, close to the star. Now I do it subconsciously, as a tribute to having had the world's best grandmother!

In 2022, my other half took my mom and me to the local nursery. The nursery had a lovely Christmas store inside and together we picked out some special ornaments for our tree. This was one of them.... a cardinal sitting inside a pinecone birdhouse!

We also picked out this fox! It is a tribute to all the foxes that roam around our property! 

The other wonderful ornament we picked out together was this golden crescent moon, for our beautiful Mattie Moon! How does a couple pick out these wonderful ornaments (not that long ago) that capture aspects of our life, and now we have nothing to do with each other? I will never understand this, I will never forget how this makes me feel, and I will never get over having to face life alone. 

The last ornament I want to share with you is this jingle bell! This bell belonged to my maternal grandmother. She suffered a massive stroke in 1990. She remained alive for four years after her stroke, with three out of these four years living in a nursing home. One December we brought her this jingle bell to wear. In fact, her room number (101) is still written on the bell itself. 

I develop deep connections to those I love, and when they are gone from my life, it is crushing. A forever loss. 

Thursday, December 18, 2025

Thursday, December 18, 2025

Tonight's picture was taken in December of 2006. This was at our apartment in Washington, DC. A place we lived in for 27 years! I just loved that two story apartment, right near the Kennedy Center and the George Washington University. That year, my parents came East to stay with us. I snapped a photo of all three of them. When I look at this photo and compare it to where my parents physically are now, it is shocking! Though as hard as this reality is to accept, the notion of my Mattie, dying is still unfathomable! There will never be a logical enough explanation for me, that can justify having to live my life without Mattie. In any case, when I was married (before Mattie died), we used to have the most beautiful Christmas trees! I remember these moments and time, and it is almost like they happened to a completely different Vicki. 

Quote of the day: Whenever I miss you, I look at my heart. Because it’s the only place I can find you. ~ Unknown

My dad had his first physical therapy session at home this afternoon. However, before that occurred, I ran out to do chores. I was able to do this because I got my dad toileted and then settled in his recliner. He is now fully incontinent to bladder and bowel, which is indeed a very sad commentary, and certainly an extra layer of work for me. 

Within about 90 minutes, I went to pick up my dad's new shoes at the podiatrist office, got gas for the car, went to the post office, spoke with the pharmacist at CVS (as my dad's meds were changed back to the meds he took pre-hospitalization), and then picked up a few more things at the grocery store. I got back home, dealt with putting things away, the laundry, feeding Indie and then the therapist arrived. I participated in my dad's session and now I have exercises that I have to do with my dad three times of day, in order to address the serious de-conditioning that resulted from his hospitalization! The good news is that the therapist feels that my dad has the ability to get back to baseline, with some work. The therapist also said that my dad is functioning well enough that a referral to a nursing home was incorrect! How I wish that my mom could help me in some way with all the things I need to do for my dad, but that is just not possible, as I manage her needs and care as well.

Later in the afternoon, I took my parents back out for frozen yogurt. Getting out of the house is important, but definitely a lot of work for me, as it involves juggling a wheelchair. I know the manager at the yogurt store, ironically she and I share the same birthday, if you can believe it! Each week, I learn about her family and she certainly knows I am the caregiver of my parents. Today, for the first time she asked me if I have a husband and children. Loaded questions! I told her, yes I was once married, and knew my former husband for 35 years. I also told her I lost my only child to cancer. You know when you can see the wheels of someone's mind turning.... well I could see her absorbing what I was saying and connecting the dots through her eyes. Seeing my nightmare through someone else's facial expression is hard to take. It is hard, because I am well aware that I am the walking advertisement of loss, pain, and isolation. What did she eventually say to me, she said..... God sees everything you are doing. You only get one set of parents and all the love, kindness, and support you give to them will come back to you. Just wait and see.  Whether this is true or not, it is certainly a very meaningful notion!

As I promised, I wanted to share some special things on my Christmas tree with you! See this pipe cleaner star? We made this with Mattie when he was in cancer treatment in 2008. Also the gold Christmas ball with a pipe cleaner hook is an ornament that Mattie's child life professional gave him. I have about 15 of those ornaments and they are all on the tree. These ornaments brought Mattie great happiness, while being confined to his hospital room. Seeing them brings me right back in time. 

See these mittens!? Mattie created them in December of 2005, in preschool! He traced his hands in a mitten and his teacher laminated them with sparkles. To me they are precious!

Do you see this pinecone. This was the Christmas ornament Mattie made in December of 2005, in preschool. Do you see that his teacher wrote out Mattie (with a crescent moon)? The moon was Mattie's symbol in preschool! I didn't choose it, Margaret (his teacher) did! The children were assigned symbols that started with the letter of the child's first name! So if you want to know why I call Mattie, Mattie Moon..... well it started in 2005! 

Mattie created this cinnamon heart ornament in Margaret's preschool class (2005). It is truly hard to believe that I have all these items, but no Mattie. 

This ornament, with Mattie's photo on it, was made in December of 2006. I absolutely LOVE this ornament, and I am so glad his teacher (Kathy) created these legacy items. Also see the green star above Mattie's photo? Mattie painted that star in preschool. My tree is filled with many Mattie reminders! 

How many parents still display their adult child's preschool items on their Christmas trees? I would imagine very few. But when you loose a child to cancer, these are the only tangibles I have left. The loss of Mattie and of my long time marriage cause me to remain living in the past. For me the past is much happier than my present and future. 

Wednesday, December 17, 2025

Wednesday, December 17, 2025

Tonight's picture was taken in December of 2005. That Christmas we went to Boston to celebrate it with my former in-laws. Their house has the perfect hill out front to sled down. Mattie was a little timid to do it alone, but was eager to sit on my lap and we did it together. I really thought we would have many more moments like this, but I have learned that what we want in life and what we actually get are two separate things. In any case, I am glad we experienced as many adventures with Mattie as possible. It may have been only 7 years together, but these years were packed with love and memories.

Quote of the day: In times of separation, I affirm that our connection remains intact through spirit. Spirits lead our loving hearts, and spirit knows no distance or separation. ~ Julia Cameron

My dad had a physical therapy evaluation at 10am. All I can say is by 10am, I already felt like I went ten rounds! To get my dad up, showered, dressed, and downstairs by 10am was a feat. But I did it! I am very familiar with my dad's physical therapists from the home health care agency. It is a duo--- father and son. The father has worked in the healthcare industry for over 30 years and he does all the assessment evaluations for his agency, and his son then does the actual therapy. Both the father and the son came over today. They were expecting to find a very depleted 90 year old. They were both stunned with how well my dad is doing considering that he was bed bound for a week and had a brain bleed. They both acknowledged me, as they feel the only reason he is thriving is because of my oversight and care! I thanked them very much for this feedback and normally I do not take the kudos, but in this case, I believe they are 100% correct. The best thing I did was discharge my dad from the hospital on Sunday. If he spent anymore time in bed, it would have been disastrous! 

After the PT evaluation, I had to get my parents in the car, because my dad had a follow up appointment with his primary care physician. This was the first time we were out of the house since Sunday. Thankfully I have Mattie's transport wheelchair. This is a lighter wheelchair, which was fine for a child, it is a bit more flimsy with someone my dad's size. But nonetheless, I am not sure I can handle maneuvering a heavy wheelchair right now, so for the time being I am sticking with the transport chair. But dealing with winter coats, blankets, a tote bag, as well as my dad's walker and a wheelchair was exhausting. Let's not forget that I also had to hold onto my mom as she's walking. So what should have been a simple visit to the doctor turned into my own personal nightmare.

Unlike my dad's therapists, the doctor felt my dad looked much more unstable on his feet and cognitively out of it. Certainly my dad has declined, but from where he was in the hospital to now, he has made significant strides. I can see it! My dad's primary care doctor has discontinued ALL of the meds prescribed during his hospital discharge. He wants him back on all of his former medications! He said at my dad's age, if something is working, you don't change it! I agree, but now I have to go back to CVS and talk with the pharmacist again, as I had her cancel out all his previous medications in order to fill the scripts my dad got at his hospital discharge! Seriously why do hospitals play with medications? Why don't they consult with the patient's doctor? The system is absolutely absurd because the in-patient doctors want nothing to do with the out-patient doctors! Leaving me to do their leg work for them. Truly it is laborious, unnecessary and worse changing medications is not always in the patient's best interest. 

After the appointment, I took my parents out for frozen yogurt. My dad enjoyed that, and he stayed in the wheelchair the whole time. But even though we are living in 2025, with all sorts of ADA laws, I would say that MOST PLACES are not well equipped to handle people with disabilities. Aisles are small, doors are impossible to open and hold open, and don't get me started about wheelchair ramps! I came across several today that were hellish. Some are bumpy, some are too steep, and some have ridges in them as you transition from the flat surface to the ramp. I can't tell you how many times the wheel of the chair got caught in this ridge, making it almost impossible to get onto the ramp! Just when I think things can't get worse, I have learned.... THEY CAN!   

At dinner tonight, we asked my dad what he remembered about his day! The answer was nothing. When I reminded him about his PT evaluation, seeing the doctor, and going out for frozen yogurt, he remembered NONE of it. In fact, he doesn't remember being hospitalized, and when he returned to our home on Sunday, he did not remember our house or the family room where he always sits on his recliner. It is like a black hole in his mind, and I guess I should be grateful he still remembers my mom and me. 

On an aside, I wanted to show you a before and after photo of my Christmas tree. Recap, I found this artificial tree in the storage area above my garage. When I was married, we used to display this tree outside. When I found it a few weeks ago, I decided to use it inside! 

BEFORE

Truly this tree had a Charlie Brown Christmas tree vibe. I have been working with it over the past couple of weeks to straighten it up and puff up its branches!

AFTER

This is what it looks like now. When it is lit up at night, to me it looks magical. It is filled with many meaningful ornaments, which I will share with you in another blog posting!

Tuesday, December 16, 2025

Tuesday, December 16, 2025 -- Mattie died 824 weeks ago today.

Tonight's picture was taken in December of 2004. Mattie was two and half years old and FULLY ON! Mattie naturally gravitated to vehicles. Anything with wheels for that matter. If you look in the background behind him, do you see that green thing on the floor? That was his sippy cup of milk! I am telling you that cup went everywhere with us..... regardless of the weather! What I love most about this photo was Mattie's beautiful smile and how his hands were always in motion exploring the world. 

Quote of the day: Your memory feels like home to me, so whenever my mind wanders, it always finds its way back to you. ~ Ranata Suzuki

I woke up early this morning because my dad had a cardiology follow up appointment. Keep in mind that my dad's cardiology office called me to set up this appointment a few days ago and claimed that the appointment had to be this week. As I was moving about with my morning chores, the phone rang at 8:30am. It was the cardiology office letting me know that they had to cancel today's appointment. Why? Because it was too close to my dad's discharge date! The insanity of this, I just couldn't make this up! I questioned the woman on the phone because I wanted to know why she knew that today's appointment was too close to the discharge date but the person who made this follow up appointment had NO IDEA? Of course there is no answer!

The home health agency sent over a nurse today to do an assessment of my dad. We have been working with this nurse for over a year now. She is lovely and she agreed with me that the "skin tear" on my dad's back (which he got at the hospital) is actually a stage two pressure wound. Thankfully, I recognized this on discharge and have been treating is ever since! But at the hospital, they weren't even covering the wound!

My dad is still in pain. He isn't screaming and moaning as much as yesterday, but still has pain and he is dragging both of his feet along the floor, making him a great candidate for falling. So if he is up and moving, I have to be right next to him. Truly if I thought my life before hospitalization was hard, it is ten times harder now. Especially since outside of the house I will need to use a wheelchair.

At some point this morning, I decided to make homemade soup, since we will be home and I need things for lunch! During October, I purchased two big pumpkins to display outside. Ironically with all our wildlife, none of them scratched or bit into the pumpkins. Then with our frigid temperatures, the pumpkins froze. I brought one inside yesterday and it defrosted, I cut it up, and cooked it! I made pumpkin apple soup and it was delicious! Even my dad ate it!

Given that I wrote a letter of complaint to my dad's hospital yesterday, I received two phone calls today in response. One from the director of nursing from my dad's hospital unit and the other was from the director of case management to discuss the case manager who called security on me (read last night's blog for more specifics). Both calls were fruitful, and each of the women were extremely professional and took my feedback and issues seriously. Some of my issues are very serious, as my dad has a pain score of 6 out of 10, and was sent home with NO pain medication! I have tried for 48 hours to get through to my dad's doctor regarding this matter, and got no where! However, after talking to these women today, don't you know it.... a pain med script was received at our pharmacy! I could go on and on, but what these women understood after talking to me, is that I am not a novice to caregiving or to the healthcare system. But what happens to patients who do not have a Vicki? Truthfully this is deeply frightening to me, especially since I am divorced and lost my son. 

While my parents were resting today, I finally went grocery shopping! I wasn't sure I could find a time this week to do this with managing appointments, therapy schedules and caregiving! But I did it! Watching me shop is probably hysterical, as I move like the wind! I know where everything is located in the store and given all I juggle, I unfortunately can't just wander around. However, while reaching for milk, a man stopped to talk with me. He was struggling with what cream to purchase. He went on to tell me that he is making his friends Brandy Alexanders! Since I never had one, I asked for clarity! He also explained that some people he is serving are on diets. By the time I finished with him, I convinced him to buy real cream, as this is a holiday and special drink. Also the thickness will be very different if it is a fat free product! Any case, there was something about this dialogue that made me chuckle. I was chuckling because I feel and look like a train wreck, yet here was a complete stranger asking for my opinion! Any case, I was very successful at getting many of the items I need to make Christmas dinner. I literally start this process days ahead of Christmas, as it is easy for me to prep one dish at a time, because I am home, but I first needed access to all the food to make each dish! Thankfully I was successful today. 

Literally I take it one day at a time in my house! Every aspect is exhausting, from the routine, managing things alone, knowing who is missing from my life, and seeing my parents declining. Overall, it is a very depressing existence and it takes a lot of inner strength to get up and face yet another day. 

Monday, December 15, 2025

Monday, December 15, 2025

Tonight's picture was taken in December of 2004. Mattie was two years old! My mom always sent Mattie a new Christmas sweater every year. Mattie would wear this sweater and pose for a photo that would be featured on the front of our family holiday cards! By age two, Mattie understood the whole notion of photos and once our tree was up, it was time to snap photos of Mattie. This was one of many taken that year. It wasn't the one featured on our card, but nonetheless, it was a cutie! When I look at this tree, I see the tree skirt and the ornaments. All of which I still have, it would never have dawned on me in 2004, that years after this photo was taken the only thing left of my family would be the tree skirt and ornaments.... Mattie and my marriage disappeared. As if they never existed. When I receive holiday cards in the mail and see happy faces, and children all grown up, I can't say it doesn't pain me. It leaves me asking why is everyone living their lives, and mine has been destroyed?

Quote of the day: I wish I could press rewind and bring you back — just for a moment. ~ Unknown

Before I tell you about the nightmare of today, I wanted to show you a photo of Mattie's beautiful memorial tree... a white swamp oak. Something told me yesterday (before I knew my dad was going to get discharged!), to go visit the tree when I had the time! Thank goodness I did, because now my hands are tied. Despite Sunday's cold temperatures, I added 15 Christmas ornaments to the tree and tied a red ribbon around the tree. NO MATTER what I have going on, I want Mattie to always know his mom remembers! 

I truly did not know my dad would be discharged on Sunday! I thought I would have a few more days to get things done like grocery shopping and the Foundation's newsletter. Now I have time for nothing! 

When I was married, I used to have Blanca come and help me clean our house every two weeks. I have known Blanca since 2008, when Mattie was diagnosed with cancer. My neighbor introduced her to me, and he felt I would need this help because I was rarely home, yet our apartment needed cleaning and organization. So I met Blanca when I was under great distress! She got to know Mattie! I can't tell you how she cried when he died and even now, when we reflect on him, it pains her with what I have and continue to face. Blanca and I have been through many ups and downs in each other's lives. Now given all I am juggling, I am lucky if I have Blanca over once every two months. I had scheduled her to come today and I did not want to switch dates, but I warned her I would be home and she would have to work around us. 

So between cleaning going on (not being able to find a quiet space) and managing my dad, I truly thought I was going to jump out the window. My dad is in severe pain, and as I mentioned yesterday the hospital forgot to send a script into the pharmacy for pain meds. UNETHICAL on every level. His pain level is almost bordering on too hard to manage at home. He has lidocaine back patches, which are doing nothing, and I have a heating pad on his back! Given his brain bleed, he can't take Advil, which would do a whole lot more than Tylenol. There is something very, very depressing about being quarantined at home, with someone screaming in pain, disinterested in helping himself by moving his body and walking. I have noticed another level of cognitive decline in my dad with this hospitalization. I am hoping that with more time at home, and finding a way to address this muscle pain, that things will even out. 

Then adding to this mix, a friend of the Foundation wanted to stop by to drop off a holiday donation. Very kind, but very difficult for me. I truly limit my socialization with the outside world. When I wonder why I do this, then a day like today happens, and I am reminded why! Why? Because I get to see my dysfunctional life through someone else's lens. I can see how my life scares people and also I can see people questioning..... why do you give so much to everyone, and care so little about yourself?! 

In the midst of chaos today, I wrote a letter of complaint to the hospital. I felt things needed to be documented. I included it below in case you wanted to read it. It is now 9pm, and all I know is my own back is killing me from helping lift my dad and holding onto him so he doesn't fall. The next two days, he has doctor appointments. Which I also find hysterical! He was just released from the hospital and is in bad shape..... how do they expect this 90 year old to get to these appointments? The answer is THEY DON'T CARE! It is my problem and the only way I can transport him is by using Mattie's wheelchair. My dad is unable to walk very far without screaming in pain. Thank goodness I kept Mattie's wheelchair over all these years.... even now, Mattie helps his mom! 

Letter to the hospital..........................

Dear ABC Patient Relations,

I am writing to express my concerns about my dad’s recent hospital admission. I am my father’s medical power of attorney. My dad, is 90 years old and has moderate stage dementia. He was admitted to your hospital, through the ER, on Sunday, December 7, with a brain bleed. Though we live outside the beltway, we consider ABC our medical home. This year alone, my dad was admitted to your hospital three times. I will bullet point the issues below and I would like to specifically know how each of these issues will be addressed.

• My dad was in Room 318, and on Sunday, December 7, my dad was transported to have an x-ray at 5pm. Typically I go with him for his scans, but I was unable to do so on that occasion. My dad was gone from his room for 2.5 hours and when I asked his nurse what was taking so long, she explained that there are not as many transporters available on the weekends. When my dad returned to his hospital room, he was very agitated, upset, and scared. When my mom and I asked him what happened and what was bothering him, he explained that the transporter dropped him off and he was left alone the whole time. In my dad’s mind, the transporter “died,” and he was going to be left in this “dungeon,” unable to get back to us. Since I was not with my dad, I do not know for certain what occurred, but it is clear to me that no one was present to alleviate his concerns. I am bringing this to your attention because patients who are vulnerable need much more oversight, support, and check-ins to avoid further confusion, anxiety, and fear. In fact, a chaperone should be available for such vulnerable patients. In any case, I would like your insight into how this can be prevented during future hospital visits. 
• Throughout my dad’s admission, my mom and I were eager to get my dad placed in your Inpatient Rehab Center (IRC) once he was discharged from the hospital. My dad entered the hospital with no back pain, but with all the transfers from his bed to transporter beds and scanning tables, he developed significant muscle spasms and pain. Pain which he has returned home with, and we are having a very difficult time managing. While at the hospital, we shared our concerns with case management, nursing staff, doctors, and anyone who approached us about my dad’s care. Despite my dad making significant physical strides on Saturday, December 13, as he got out of bed, stood, and walked 15 feet with a physical therapist, he was still denied admission to the IRC. This was very upsetting for us to hear, and when we asked for the criteria used to make this decision, the only definitive answer we received was that from their perspective my dad would be unable to withstand three hours of therapy a day. We feel that this decision was made in haste and it was also very subjective. On Sunday, December 14, Theresa (case manager) entered my dad’s room and bluntly told us that my dad was denied placement into the IRC and instead presented us with two Skilled Nursing Facility (SNF) referrals. My mom and I proceeded to ask Theresa questions, explained to her that we were not interested in a SNF placement, and then wanted to know the specifics regarding why my dad was denied into the IRC. We were insistent, specifically because we saw the great progress he made on Saturday. Theresa did not like my tone; she did not like me questioning this decision and proceeded to walk into the hospital hallway and within minutes two hospital security guards were in my dad’s room. They escorted me out of his room, and wanted to talk with me, as Theresa implied that I was verbally abusive and threatening. I never cursed at Theresa; I never moved near her or touched her. I proceeded to tell both officers the medical ordeal we have been through these last seven days and shared that I am the full-time caregiver of both of my 90-year-old parents. The two officers immediately could recognize that I was just a distraught, overwhelmed, and passionate daughter and caregiver. If these two officers could assess this quickly, why couldn’t Theresa? It was completely inappropriate for her to call security on me. You may ask any of the nursing staff from 3A about me, as I was never abusive to a member of your staff, and in fact pulled 6–8-hour days in the room each day trying to help and meet my dad’s needs. I would like to make a formal complaint about Theresa. As a fellow licensed mental health provider, I view her behavior as totally out of line. Families of patients are going to get upset, angry, and advocate strongly. That is our role… to love, protect, and ensure the highest quality of care for our loved ones. It saddens me that Theresa showed no empathy, no compassion to me or my mom, and did not use intentional listening skills to form a connection with us, to help the situation and to help alleviate our stress. Finally, I would like an apology from Theresa, and I would also like some assurance that no other family is going to be wrongly accused by her.  
• My next issue relates to discharge. During the discharge process, I requested that home health care orders (for PT and nursing) be sent to XYZ Home Health. When I called XYZ this morning, they said they received no notifications or orders from ABC. I then quickly contacted Dr. A's office and requested that the script be faxed over. I am juggling a lot with my dad’s full-time care and pain management. It would have been helpful if I did not need to do this extra legwork. In addition, when my dad was discharged, new medications were prescribed and sent to CVS. In the discharge orders it says that my dad should take Oxycodone. However, CVS never received a script for that pain medication. Given that my dad is in significant pain, how ethical is it to send a patient home without the needed pain medication? If that was not bad enough, the medical team prescribed insulin (a drug my dad has never taken at home prior to admission). CVS received the script for insulin, but no script for needles. How is a patient supposed to take insulin without the needles? I will be visiting my dad’s primary care physician on Wednesday and will be discussing whether insulin is necessary. However, I think these two oversights are significant enough to be mentioned as patients and their families rely on your medical team to discharge us with all the necessary medications needed to manage in-home care.

Thank you for your attention to these matters. I look forward to hearing from Patient Relations about these issues and the steps being taken to remedy each one. 

Sunday, December 14, 2025

Sunday, December 14, 2025

Tonight's picture was taken in December of 2004. Mattie was two and a half years old and by that time, had some understanding about Christmas. As packages arrived for Mattie from family, I would store them under our staircase. But as you can see, both Patches and Mattie really wanted to explore those boxes! Patches was an amazing cat and truly she just got it.... as soon as we took Mattie home after he was born, she knew he was precious cargo! Mattie learned how to love and care for animals from Patches, and she was a great teacher! When Mattie was sick with cancer and in the hospital, he longed for Patches to visit. The hospital never allowed that to happen, even as it was his last request while dying. Something I will NEVER forget. 

Quote of the day: If I had a flower for every time I thought of you … I could walk through my garden forever. Claudia Adrienne Grandi

The past three nights, I have had very vivid dreams. Typically I am so exhausted that I go to sleep and wake up and have no memory of anything in between. But that wasn't true the last three nights. Each night, in some shape or form I had a dialogue with my former husband. Perhaps I will discuss this in another blog posting, but tonight, I wanted to share my horrific day! I truly wonder about the state of our healthcare system, and God forbid you are in the system without a family advocate..... because I can assure you the system is about numbers, data, and insurance reimbursement! If you don't meet numbers and insurance won't cover a treatment or stay, you will be shown the door! Even if it isn't in your best interest as a patient, and don't get me started about the family caregiver. The system cares even less about us!!! 

I would like to know why hospitals are so eager to discharge older adults and send them to a Skilled Nursing Facility (SNF, or plain and simple a NURSING HOME). With the frequency of their referrals to SNFs, you would think there is a financial incentive involved for the hospitals. Other than by getting rid of you, they check the box off that they helped a patient and now freed up a bed for another paying customer! Why was today awful? Because I had the unfortunate opportunity to meet Theresa, a case manager. She wasn't the case manager I had been working with all week. The original case manager doesn't work on the weekends, so I got Theresa instead. Theresa came in with a total attitude and said my dad was not accepted into the hospital acute rehab program and instead she presented me with a print out of two nursing homes willing to take my dad for rehabilitation. When my mom and I pushed back at her, trying to get specifics about why my dad was denied, she kept reiterating that we were already told why he was denied! TRUST me, I don't have dementia! No one reviewed the criteria with me as to why specifically my dad was denied. All they tell me is that my dad doesn't have the stamina for three hours of therapy a day! That is ridiculous, specifically since therapy is NOT back to back in acute rehab, there is time in between to rest! He could do acute rehab, but they weren't willing to give him a chance! 

Yesterday's physical therapy session, in my presence, went very well! That is because I know he can push through the muscle pain and I also know what he is capable of doing! I am quite certain if I had been present for the other physical therapy evaluations (which always happened before 9am!), my dad would have qualified for rehab today. But without me present, the therapists were hesitant to move him, as he moans and screams in pain. Part of it is naturally my dad and part of it is his dementia. He can perseverate on certain things and then blow them way out of proportion. They would know this, if they even consulted with me throughout the week. So note to self.... in the future, with any other hospital admission, I will demand that I MUST be present for all therapy sessions! Otherwise, we will face exactly what happened today. They see a 90 year old with moderate dementia, and truly the system writes him off. In fact, the hospitalist said to me at one point.... maybe your dad doesn't want to do the work and rehabilitate. Maybe he just wants to sit, watch TV all day, and relax. I am sorry...... if that is what this doctor wishes for his own dad at age 90, good for him, but my dad is capable of having a fuller quality of life than this doctor imagines. 

Any case, back to Theresa! Theresa did not like my tone when I asked for clarity about the rehab center denial and literally she went out into the hallway and called hospital security. I KID YOU NOT! Within minutes two very large police officers were in the room and escorted me out of the room. They then interrogated me in the hallway! I SWEAR I can't make this stuff up! They wanted my perspective on what was happening! I explained the whole situation calmly. By the time I was finished with them, they were on my side and gave the social worker a talking to! I under no circumstance ever threatened her, never cursed, and never moved toward her! I disagreed with her, and she did not like that! Seriously if she can't understand the anxiety, fear, and anger of a family caregiver regarding the poor discharge process of a loved one, then I think she needs to find another line of work! Working with something that doesn't have a pulse to be very specific! In all my life, NO ONE has ever called security on me, and as I told the officers my role is to advocate for my dad and when I see an injustice, I speak up and confront it. They understood immediately! 

So bottom line, I decided to discharge my dad from the hospital tonight and I took him home. He would decline at a rapid pace in a nursing home, not getting the attention he needed, and also given little to no movement each day. He will get more movement from me and also be in a non-clinical setting, which I think is more normalizing. Of course the burden and work are now on me. On discharge they reviewed all the new medications my dad was prescribed. One of which was insulin. Prior to hospitalization, my dad wasn't taking insulin, only an oral med. When I got to the pharmacy tonight, Stacey, our wonderful pharmacist said.... they did not prescribe needles to go with the insulin! She told me that if I paid for needles out of pocket that will be over $50, but with a script it is fully covered! DEAR GOD HOW STUPID ARE THESE PEOPLE!? While at the pharmacy, I contacted my dad's primary care doctor. I told him I wasn't getting the insulin and why! Why? Because in the hospital oral diabetes meds are not given to patients. Instead, every patient with diabetes gets insulin. However, now that my dad is home, the hospital wanted him to take his oral med and the insulin! I questioned this.... after all they never gave him both in the hospital and I never gave him both at home before! How do they know that this combination of drugs won't produce hypoglycemia (low blood sugar)? My dad's doctor agreed with me and so for now, we are holding off on insulin, until I see the primary care doctor this week. On top of which the hospital prescribed pain meds for my dad, but guess what??? They never sent a script to the pharmacy for it! This level of incompetence is too much for my mind and heart to handle tonight! 

It is now 9:20pm. My dad had dinner, I applied his pain patches on his back and attempted to take him up the stairs to bed. I know that sounds aggressive, but I want him to get back into the routine and fully use his body. Do note, that he has NO MEMORY, NONE, of being in the hospital this week or being discharged tonight. This actually works in my favor, because for all my dad knows, he has been doing this for the last week. Meaning, that he wasn't opposed to going upstairs. My goal was to see how he did on the first few steps. If I deemed him unsafe, I would have aborted the process. But guess what, with direction, and a couple of pauses, he got upstairs and into bed. I am very proud of him and my hope is he continues to make progress. His in-home care team (PT and nurse) will begin once again this week, and I am so thankful I already have these professionals to turn to, as they have worked with us now for two years!  

Saturday, December 13, 2025

Saturday, December 13, 2025

Tonight's picture was taken in December of 2003. Mattie was a year and a half old and this was his second Christmas with us! I wanted to capture a photo of him for the front of our family Christmas card. Sitting still wasn't Mattie's forte, so I figured if we took him to his favorite stores to look at Christmas lights and displays, we would be able to capture a great photo! I can't tell you how many photos we snapped that day! This being one of them. It did not land up on the front of our card, but I find this photo so so charming! Mattie was in awe of the displays and they stopped him in his tracks! 

Quote of the day: But nothing makes a room feel emptier than wanting someone in it. ~ Calla Quinn

This morning, my mom and I got to the hospital at 11am. I wanted to get there before the physical therapy evaluation in order to prep my dad for what was going to happen and how important it was to comply with what is asked of him. In the process of having these pep talks, I shaved him, brushed his teeth, and washed his face. I always find looking cleaner, makes me feel more human. Especially in a hospital setting! 

My friend Ann also came to the hospital today to assist in this process. Ann is an occupational therapist, and does countless evaluations like this, but at a different hospital system. Ann helped us talk with my dad and she had him do some exercises in bed, in order to get him stretched to perform better for his evaluation. 

It is hard getting through to my dad psychologically and cognitively! If you ask him what his goal is, his response would be to relax! That is NOT a goal, and truly doesn't really reflect his intentions. So I tried to explain today's evaluation in terms he could instantly relate to! What was that specifically? His career! My dad worked for Warner Bros in Los Angeles. I asked him to imagine his boss coming into the room and interviewing him for a job. Would my dad want to appear disinterested, uncooperative, not willing to work, and show no motivation? The answer was NO! Somehow creating the analogy between his career and today's PT evaluation clicked in his head! He understood that he had to have his A game on! Which meant that he had to push through the muscle pain and move, stand, and walk! 

When the therapist arrived, she was surrounded by me, Ann, and my mom. I tried to put my dad's activity level into context for the therapist! Yes, my dad may be 90, but he goes to a memory care program for at least six hours, three times a week. He has physical therapy sessions four times a week, and I take him out daily! So that is a lot of activity and this needs to be known, because a week ago, he was doing all of these things! 

Make a long story short, my dad was able to get out of bed, to stand and to walk 15 feet. Yes there was pain, but it was manageable. I was very proud of him and I expected the therapist to say..... he definitely qualifies for acute rehab! Unfortunately she did not say this! She says it will be up to the acute rehab team and Medicare! I truly want to throttle someone. Because if he doesn't get into acute rehab (where he would get three hours of therapy a day), I will be presented with either having him rehab at a nursing home (where he would only get one hour of therapy a day) or take him home. I truly have NO IDEA what I will do! I really think my dad would go down hill mentally and physically in a nursing home. He would be left sitting or in bed because he will be deemed a fall risk, and only allowed up during the one hour of therapy. In addition, with his irritable bowel issues, I know cleaning him up will not be as rapid as it is in the hospital, which is a concern for the health of his skin. But then again, can I manage him at home? Truly I have NO answers!

My mom keeps peppering me with questions, wanting to know if the hospital rehab will accept my dad. I DO NOT know any more than she does, so the constant questions are only causing me more anxiety! I am expected to make big decisions, and all decisions could have financial consequences! This is when I just want to flip out! Where is my other half? Why must I balance the impossible on my own? I do not know how I haven't cracked up yet, between this divorce and caregiving. One of these issues would be bad enough, but together, forget it. 

Friday, December 12, 2025

Friday, December 12, 2025

Tonight's picture was taken in December of 2003. Mattie loved going to Los Angeles. It was a real adventure for him, especially in the winter months, where it was so much warmer than the East Coast. Since Mattie was all about being outdoors, this was the perfect Christmas escape for him. As you can see from this photo, he was practically dragging my mom..... when Mattie had an idea in mind, he was all business and he wanted my mom to catch up with his plans!

Quote of the day: I felt her absence. It was like waking up one day with no teeth in your mouth. You wouldn't need to run to the mirror to know they were gone. ~ James Dashner

Is it possible for me to get more distraught? The answer is YES! Today, I thought my heart was going to jump right out of my body! I knew I couldn't get to the hospital early today, because I had a pre-arranged appointment to get my Prolia shot. I have learned the hard way that not taking this drug consistently impacts my bone density score. So given I was told that my dad's physical therapist wasn't coming back this week, I did not feel the stress and pressure to get there early. When I went for my shot today, they had me sit in a recliner and they take my blood pressure and basically have me relax. What a concept. My blood pressure was so low, I wondered if I was alive! Any case, sitting still for ten minutes and listening to the soothing music they had playing was therapeutic. How many people can say that going to get a shot is like going to a spa and is therapeutic? Probably not many, but this forced break was wonderful and I was hoping that feeling would carry me through the day! I am not sure why I even think this, or have the hope for peace, because it just isn't my destiny. 

When I got to the hospital today with my mom, his nurse came in and gave me the good news that my dad was going to be admitted to the hospital's acute rehab. This program is run by my dad's doctor and my dad already went through this program twice before, so it is a known quantity.... which is vital for my dad, who suffers from moderate dementia!

Literally after hearing this news, I was breathing a sigh of relief. I could feel the tension go out of my body, because this program forces him to work three hours a day with therapists, who help him rebuild his strength. NOTE that my dad came to the hospital walking, yet after countless transfers from beds to scanning tables, he developed muscle pains and spasms. In addition, he has been kept bed bound for a week, and is therefore stiff and weak on top of having muscle pain. After 90 minutes of learning that my dad was going to be admitted to the rehab unit, my dad's case worker came into the room. She let me know that a physical therapist did a re-evaluation of my dad today (so I was given misinformation yesterday, that she wasn't coming back to evaluate him) and it was deemed that my dad will not qualify for the rehab center. Criteria is determined by Medicare, naturally, and if criteria is not met, Medicare will not pay for this care. Naturally I was confused as I was told he would be admitted 90 minutes earlier. 

This case worker truly did not know what hit her today. By the time I finished with her she was teary! I basically told her that if the medical team releases my dad to a nursing home, this will be the beginning of the end for him and I will hold them all accountable for his demise. I was literally so upset that I was screaming. The charge nurse came into the room and was present for this conversation. She happened to be a bright and sensitive woman, so was quickly connecting the dots about our case. She pulled up the PT notes from today and the therapist basically documented that my dad elected not to get up, he wanted to rest in bed. The charge nurse said that as healthcare providers they are required to listen to the patient's desires and wishes! That is when I lost it! Certainly I can appreciate that decision if you are talking to a rational and cognitively intact individual. But my dad is NOT competent to make any important decisions for himself, which is why I am his medical power of attorney. I made it clear that all questions and decisions have to be run passed me. I also demanded that my dad get re-evaluated by the physical therapist in my presence and if I have to appeal the decision to discharge him, I will. Which I believe will buy me the weekend (maybe). 

My dad is weak and his muscles ache. If you ask him to move, he will naturally say.... no I do not want to move. I tried explaining to my dad tonight the importance of complying and I told him how he would be assessed. But frankly it is like talking to a sieve. Information goes right through him and he can't understand the importance of giving it his all with the therapists. Truly tonight I wanted to jump right out the window of the hospital. I was so distraught working with a system that doesn't understand the complexities of older adults, a system that could care less about the family caregiver or seeking our insights and perspectives, and a system that leaves a 90 year old bed bound for a week and then expects that on an assessment, he will just bounce out of bed and comply. What kind of world do we live in? 

The notion of my dad going to a nursing home will just about kill me. I have done everything I can possibly do to keep him healthy, active and living within the community these last four years. Now when I turn to a hospital for help because he presented as confused and disoriented on December 6, I am left with a patient who is more debilitated a week later than when he entered the hospital. Whenever my dad is in a hospital or rehab, I work even harder than when he is home. Because I basically have to move into the facility to oversee him and his care. Not only is he an older adult, but he is cognitively vulnerable! 

Tomorrow, my dad is seeing a physical therapist again. I am getting to the hospital earlier and I had them make a note that the therapist can NOT do the evaluation without me being present! All I can say, is GOD help me and help me manage this situation. As I was driving home, feeling distraught and yet having to keep it together for my mom, I said to myself..... I MISS being MARRIED! I MISS having another competent body and mind to bounce problems and ideas off of, and I MISS NOT FACING THE WORLD ALONE. I am ANGRY, DISTRAUGHT, and UPSET and it takes a great deal of inner strength not to let these feelings that are by-products of childhood cancer, child loss, a horrible divorce, and caregiving, fully consume me. 

Thursday, December 11, 2025

Thursday, December 11, 2025

Tonight's picture was taken in December of 2003. It was Mattie's second Christmas with us and that year we celebrated it with my parents in Los Angeles. My mom set up this cute little tree for Mattie in the kitchen, as we spent a lot of time in this space. I am not sure what Mattie loved more... unwrapping the presents or what the presents actually were! He loved paper flying and the whole process and of course if you look closely Mattie's sippy cup of milk was right beside him. It was like his security blanket! When I look at the ornaments on this tree, I am saddened that my mom did not keep them. I grew up with many of these ornaments and I remember decorating countless Christmas trees with my maternal grandmother. In fact, do you see that red bird on top of the tree.... it belonged to my grandmother. It was her tradition to put a bird at the top of the tree. Ironically when I look at my own tree this year, don't you know it.... I too have a red cardinal at the top of the tree. I just do it instinctively, it wasn't a conscious decision. It is a sign that my grandmother is with me!

Quote of the day: Missing you is flashes of our past and fantasies of our future with the hard irony of the absence of our present as present occurs. ~ Zhi

I am trying to slow down the process in the morning because my mom is exhausted. We got to the hospital around 1pm, and when I walked into the room, my dad just had an enormous bowel movement. Given his size and his inability to move, he is forced to go right in bed. Not the most comfortable of situations. I quickly met his nurse, and I dropped everything to help her because my dad is definitely a two person job when in bed. At first I think she wanted me and my mom to wait outside, but there is nothing she is going to be doing that I can't handle. Which she quickly learned. Moving my dad side to side in bed is no easy feat, but we got the job done and I also helped her remake the bed with him in it. I then asked her about the plan to get him out of bed. Like yesterday's nurse, she told me she had a few things to do but would be back to help. Don't you know it, 3:30pm rolled around and my dad was still in bed. After 2.5 hours of waiting, I lost my patience, and pushed the call button. 

The nurse did come in and she brought a tech. Then all three of us worked with my dad to try to get him out of bed. I can definitely get him upright, legs over the bed, and feet on the floor. It is the standing part that is still a problem. Of course he was moaning in pain, and for the most part they wanted to stop the process. I literally said, NO! My dad needs to be pushed, because he has spent five days in bed, this isn't good for his muscle pains and most definitely will not help his stiffness. If they don't get him moving soon, he literally won't physically and cognitively BE ABLE TO MOVE! Any case, they complied with my request, and we got my dad standing for several minutes and he even walked a few steps sideways. To me all of this is crucial, because they have to document progress in order for my dad to be able to get into the hospital's rehab. I have no idea how he would show progress if they never moved him. 

After this standing routine, the nurse insisted on getting him back in bed, as her comfort level with him was low. What she did say to me is that if I wasn't present, they never would have moved him. This is where the family caregiver is vital. Because they do not have the daily history with my dad like I do. I know his signs, symptoms, and expressions and I know better than they do what he can and can't do. But overall, I am disgusted with our healthcare system, especially as it addresses the chronic needs of older adults. Every older adults who is hospitalized should have access DAILY to a physical therapist. A quick visit from a physical therapist every THREE DAYS is ridiculous. Might as well not have a therapist at all. Older adults need more support and being quarantined in bed is not good for one's physical, psychological or cognitive recovery. Because the physical therapist who visited with my dad yesterday (not in my presence) deemed him incapable of getting out of bed, this basically dictates to the nursing staff not to move my dad, because it's not safe. 

I get it from a liability stand point, but at some point the system has to move past their legal worries and do what is in the best interest of the patient. I do not care what level of mobility a patient has, some form of movement should be required daily for a hospitalized patient and provided by a trained therapist. As it is nurses are over worked and they can't be expected to take on this role, and in many cases, most of them do not feel well trained to manage a heavy patient like my dad. What is equally frustrating is that tomorrow is Friday. I have NO IDEA what the care plan is and given the fragile nature of this mix, I do not do well without a plan. What I do know is NOTHING of substance happens in a hospital on the weekends, so the options I can see is either my dad remains in his current room, or he gets transferred to the hospital's rehab or worse that they want to discharge him. I do not know what lies ahead and this is a scary place to be. 

After a full day in the hospital, I then come home and manage the house, bills, mail, laundry, Indie, and everything else. It is too too much. Given that it is December, the Hallmark channel shows back to back Christmas movies. I had this channel playing in my dad's room. This evening while listening to a movie in the background, I heard the male character telling the female character that he broke up with his previous girlfriend. He explained that he had an important presentation to give, he was dressed in a suit, anxious about the presentation and it was raining. He suggested to his girlfriend who was in the taxi with him, that he wanted to the taxi to drop them off so he could easily jump out and not get wet to look presentable at the conference. She did not like that suggestion and felt that he should have been more concerned about her than his own appearance. Any case, the female character he was telling this story to basically said, a true partner should want to walk in the rain with you. It was the way she said this that resonated with me. She is 100% correct, someone who loves you is there not just in the good times, but when it rains, pours, and when challenges and crises arise. True love doesn't walk away.

Wednesday, December 10, 2025

Wednesday, December 10, 2025

Tonight's picture was taken in December of 2003. We were visiting my parents for Christmas and Mattie was doing one of the things he loved best... playing with water! For my parents, Mattie was quite a different experience from raising me. Though emotionally Mattie and I were practically the same, we differed greatly in terms of our physical activity. While I could entertain myself, sit still, people watch, and be very compliant, Mattie was a live wire, highly active, and had a mind of his own! Mattie pushed all of us and through the process, he enriched our lives beyond measure. 

Quote of the day: Missing you is my hobby, caring for you is my job, making you happy is my duty, and loving you is my life. ~ Unknown

I arrived at the hospital today at noon. I did not leave until 8pm. It was a very full day! My dad was more alert today, but still bed bound. I wasn't having any of it! TRULY I went ballistic! Don't you know that the physical therapist came in and evaluated my dad when I wasn't there! Of course she sees his mental state, his pain, the fact he can't move, and therefore her recommendation was.... that my dad should be discharged to a skilled nursing facility. Translation... a nursing home for rehab. I have been to many nursing homes in my life and I have yet to find one I like. Even the best nursing homes have problems! I want to avoid these facilities at all costs for both of my parents. My mom placed my grandmother in a nursing home in 1992, after my grandmother's stroke, and I will never forget my reaction to this and I was in my 20s! I literally had a meltdown and almost flipped out on the director of the facility. Going into these facilities is a sensory nightmare for me. 

The problem with the physical therapist's pronouncement today is that she truly will influence my dad's next steps. Her recommendation is valid for three days and therefore, if the hospital wants to discharge my dad in the next three days, they will be following her recommendation. So clearly you see we have a problem! In addition to learning her recommendation, my dad was assigned a nurse named Angel! This woman does NOT live up to her name in any capacity. I have had the unfortunate opportunity to work with her during one of my dad's previous admissions, and I found her so difficult that I wrote a formal complaint about her to her supervisor. Lucky me, she was assigned to us again today and when I tell you we are like oil and water, I am not kidding. I am not saying she isn't competent, she is, but her personality is harsh and she has NO appreciation for the family caregiver. Doesn't care what I say or my insights. 

Any case, Angel said that she would help me get my dad out of bed after she had lunch. Keep in mind my dad hasn't been out of bed since SATURDAY! He is 90, so being bed bound for a few days, is equivalent to us being bed bound for weeks! I was fine waiting for her, but then 3:30pm rolled around and she was no where to be found. At which point, I rang the call button and told the person who answered that I was going to move my dad to the edge of the bed. That I wanted him moving and wasn't waiting any longer! They approved me to do this, and they thought I was going to get nowhere. Wrong! I got him sitting up, his feet over the bed and touching the floor! If I can do this, and I weight 108 pounds and he weights 200, then for goodness sakes.... a whole team should be able to do this! I naturally wanted him to get on his feet and pivot to the reclining chair in the room, but I was smart enough NOT to take that on alone. So again I rang the call button and this time Angel came in! She was furious with me and said she was helping another patient. I get it, but where was she the last three hours?? NOT HAVING LUNCH ALL THAT TIME! 

So Angel and two other people came in to try to get my dad standing and to the chair. She basically told me to move out of the way. They couldn't get him up on his feet at all! So they put him back into bed until they could get this contraption called a hoyer lift (see photo)! 

This whole interaction set me OFF! I grabbed my purse and told my mom I was going for a walk. I literally left the unit and went down to the first floor of the hospital, heard the pianist playing, and eventually went to the cafeteria to get salads for me and my mom. When I regrouped I went back upstairs. But some times this feeling of being distraught comes over me! Like a wave. As of this month, I have been caregiving 24/7 for FOUR YEARS straight without a break. If that wasn't bad enough, I also faced an awful divorce. After 35 years together. The divorce and the circumstances around it would be enough to set anyone over the edge, but add to it caregiving and countless other issues.... it becomes the perfect storm.

When I returned to the room, I set my mom up to eat, and found my dad had been lifted into the reclining chair while I was gone. He was moaning in pain. I told him to take deep breaths as his muscles are sore and frozen. I massaged his back and then took out my trusty heating pad (I go no where without it), and I placed it safely behind material and then onto his back. I would say within ten minutes, the heat began to calm him down. The more he sat on the heat, the more his tense and clenched face, arms and body were at peace. 

Eventually Angel blessed me with her presence again and this time I interrogated her about the medical plan. I wanted to know what they are saying about discharge. Of course she never gives me a straight answer, but she admitted that my dad's rehab doctor is involved and he is advocating for my dad to go to his rehab unit at the hospital (do note that this rehab doctor and my dad's cardiologist saw my dad ambulating less than a week ago when he went for his regular check ups). However, my dad has to show some sort of progress to get there. I am very grateful to my dad's cardiology team who wrote orders for more diuretics and electrolytes today. This medically buys us more time, in hopes that I can get my dad up on his feet. I am at a loss because there is so much I can do, the rest is up to my dad, and unfortunately no matter how much coaching I give him, he can't comprehend the importance of giving it his all to get up on his feet and show progress.

While juggling all of this, my mom got one of her massive nose bleeds tonight in the hospital. So I was packing her nose, running and getting ice for the bridge of her nose and getting her to lie on the couch in the room and relax. She was frightened and shaking like a leaf. DEAR GOD, I am ready to have a meltdown. 

Tuesday, December 9, 2025

Tuesday, December 9, 2025 -- Mattie died 823 weeks ago today.

Tonight's picture was taken in December of 2003. Mattie was a year and a half old and was spending Christmas with my parents in Los Angeles. I captured my dad and Mattie clapping to music and entertaining each other. My dad used to have a whole routine with Mattie that would crack him up in laughter! I am so glad I captured these silly moments. Because believe it or not, it is hard for me to remember my dad when he was well. This is what happens when you care intensely for someone who is ill, the illness has a way of robbing your memories of the once healthy and intact person!

Quote of the day: My world is a million shattered pieces put together, glued by my tears, where each piece is nothing but a reflection of you. ~ Sanhita Baruah

Recap, I brought my dad to the emergency room on Saturday, and he was admitted to the hospital on Sunday at 3:30am. So today was day 3 in the hospital! He was admitted with a brain bleed, and he presented as being very confused, disoriented and unstable on his feet. 

My mom and I feel like the walking wounded and she is falling apart. My mom is very, very tired, and her voice is raspy. I have to now watch that she doesn't get sick. I want to leave her home, while I go to the hospital, but she doesn't want to be left behind, and in actually that is probably just as well, because she can't be left to her devices and wouldn't know how to care for herself. 

When I got up this morning, I went downstairs in my pajamas to check on my mom. When my dad is in the hospital, she prefers sleeping on the couch with the TV on. Though she wanted to get up this morning, I told her to lie back down. She needed the rest and I gave her Tylenol. While she was resting, I spent some time paying bills. Or I should say, my usual monthly juggling act of figuring how I am paying bills. I am so grateful that my computer was working this morning. Last night when I got home from the hospital, my computer was acting up! Which was odd because I get it checked through Geek Squad every two months. Any case, I was frustrated as I couldn't get my browser to work, without rebooting my computer every time. Mind you I had a full day in the hospital, but at 9pm, I decided to log into my Geek Squad account and got them to help me. This was one of the best things I ever invested in.... technology help! The agent working with me was lovely and after about an hour, my computer was working perfectly! This however is the one major side effects of my divorce, I suffer from anxiety and fear about everything. 

Back to this morning, after bill paying, I went upstairs to shower and dress. While getting dressed, my phone rang. It was the hospital! On the other end was the case manager assigned to my dad! I literally did not give her a second to speak, because I said to her if she was calling to talk about discharge, she is going to have a problem with me! Of course she was calling about discharge! Literally this woman had no idea what hit her. I explained to her that prior to hospitalization my dad could walk, but after a few days in the hospital (with multiple bed transfers and being placed on ct scan and xray beds) my dad's back is in severe pain. I told her it was the hospital's responsibility to return him to baseline. She then suggested that I hire a caregiver if he returns home! I told her my dad has me, he doesn't need a caregiver. He needs skilled professionals like physical and occupational therapists to help him recover and that this could only happen in the hospital's acute rehab facility. I made it very clear that he is NOT going to a nursing home for rehab. 

I am quite certain that many of the health care providers I interact with think I am a b*tch. Sorry, I truly do not care! My role is to advocate for my dad and look out for his best interest in a system that could care less about a 90 year old! When I arrived at the hospital today, I found my dad totally OUT OF IT on pain medication. He slept the entire day away and couldn't be aroused! This was very concerning because if he doesn't start moving soon, he won't be able to, as he has been bed bound since Saturday. His nurse today was an angel! She was professional, kind, and was a great advocate. Unlike his nurse from the past two days. A stellar nurse can make all the difference in the world. Any case, Fatima understood that pain meds had to be stopped and that we needed a plan moving forward. 

In the process my dad's rehab physician (who runs the acute rehab center at the hospital) came to visit and assess him. He decided that my dad needed a ct scan on his lumber and thoracic spine and of his pelvis to rule out any sort of fracture. Because without this data, everyone is going to be afraid to move him! He then explained that to qualify to get into acute rehab, my dad needs to be alert enough and be able to move! So tomorrow a physical therapist is coming to evaluate my dad! I am sure she will come when I am not there, but her assessment will truly determine the next step of his recovery process. I am frustrated because without my presence, my dad could land up getting discharged without getting the rehab he needs. 

After that visit, the hospitalist came in to visit. This is a doctor who basically oversees your care when inpatient. They write all orders, scripts, and direct care. I told him that my dad's rehab doctor visited and that he recommended ct scans. The hospitalist is a young man and don't you know it, he said to me.... don't you think we should ask your dad what he wants to do?! Meaning whether my dad wants to go home, rehab there and relax, or instead go to rehab and take an active part in his recovery! NOPE, I did not like that question! I told him you can't ask a 90 year old man with moderate stage dementia what he wishes to do! My dad will always choose to relax versus physically work! That would NOT BE IN HIS BEST INTEREST or help with his overall quality of life. So I said, as my dad's medical power of attorney, I have to make this decision for him, as I know what he is capable of and how he would want to live his life. Which means..... he needs rehab, he needs to get out of bed, and he needs to move his body. 

In any case, with each day I get more and more fatigued as it is wearing running back and forth to the hospital and constantly advocating on my dad's behalf. Case in point, tonight, a transporter came to take my dad for his ct scans. He wanted to transfer my dad from his bed onto the transporter gurney. Trust me transfers that use a sliding board are very hard on my dad. So between myself and Fatima (the nurse) we advocated that the transporter keep my dad in his hospital bed and wheel him to the CT scan in his own bed. I also told the transporter NOT to leave my dad alone, because if he did I was coming with them and overseeing the process. The transporter assured me he would stay with my dad and unlike Sunday's x-ray which took 2.5 hours (leading to my dad's thorough confusion), tonight's total time that he was away from me was 20 minutes. I have learned I can advocate for my dad to be taken to scans in his hospital bed and that I can demand that the transporter stay with him. I learn something new in every admission! 

I was at the hospital today from 1pm to 7pm. By the time I got home, though tired, the chores begin. This is where having a spouse would truly be of help, as the burden gets shared. Where I would have someone looking out for my best interest, but what I have learned from the cruelty of this divorce is that the only one that who is responsible for me, is me. 

When I arrived home, I received a beautiful card and gift from a colleague and friend of mine from graduate school. I thanked Jean tonight and told her I truly do not know what I have done to be deserving of her incredible kindness and generosity over these last 16 years. A portion of her response was.... 

I always looked up to you and admired you during our time at GW. Now I am amazed at all you do and have done and feel it is so so unfair all you have been through.

Jean reminded me tonight of the person I once was, as the joke in grad school was.... does Vicki ever sleep? Because I could do the work of ten people! Back in grad school, I was a person who did not have the baggage of childhood cancer, child loss, and divorce. Life seemed so different then and unfortunately that Vicki has now died, and though I may look physically the same, my spirit has been crushed.