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. 

Monday, December 8, 2025

Monday, December 8, 2025

Tonight's picture was taken in December of 2003. Mattie was a year and a half old and he was in my parent's backyard in Los Angeles. They had all sorts of fruit trees. I can't tell you the amount of time Mattie spent picking, collecting, and sorting the fruit. It was no wonder I nick named him "Farmer Brown!" 

Quote of the day: I exist in two places, here and where you are. ~ Margaret Atwood

This morning, my mom and I were both exhausted. But I had to get to the hospital for my mammogram, which meant herding my mom. She truly does not do well in the morning! When I got to the hospital, I brought her to the main lobby and set her up with her breakfast that I brought from home. I then walked to the outpatient portion of the campus and got my testing done. Truly my head was all over the place, and while at the imaging center, I was sending all sorts of messages to my dad's doctors. How I even got the mammogram done, I don't know. As I was going through the motions, with my head in four places at once. 

When I arrived in my dad's room, chaos was unfolding. My dad pulled out all his IVs. He had two in his arms yesterday! That may not sound like a big deal, but it is for someone who has rolling veins. It is very hard accessing his veins. So I faced the IV issue, I deduced quickly that my dad was constipated --- as he wasn't eating much and was moaning in pain, and then add to this, his back is spasming and he is in horrific pain. It is hard for him to lift his arms to eat, you can't turn him side to side, you can't move the bed, or do anything without him screaming. Which means that my dad has not gotten out of bed since Saturday! That is like being in bed for month for the rest of us. The more time he stays in bed, the worse his trajectory for recovery will be!

I did meet with his doctor today and he quickly understood my concerns. My dad's pain is significant enough to warrant giving him Oxycodone. Even with one dose of this pain med, he was still screaming in pain! It made NO DIFFERENCE! So that isn't working. We discussed a muscle relaxant, but they are all afraid to give him this because they feel it will impact his cognitive state. Either case, at least I did not have to advocate for him to remain at the hospital. He isn't stable to go anywhere.

In addition, I called to talk with patient advocacy today because I felt like a complaint needed to be filed about the treatment of cognitively impaired patients being transported for an x-ray. My dad was transported for an x-ray on Sunday at 5pm. He did not return to the room until 7:30pm. By the time he returned, he was hysterical and scared! He said that the transporter just left him alone all that time and he thought the transporter died and that he would never find his way back to us and his room. Why wasn't someone keeping him posted? Checking in with him? Reassuring him? As two hours away from his family is a long time! 

As some point today, my mom and I spoke to my cousin Maureen. Maureen has been a devoted caregiver to multiple family members over the course of her life, so she is very familiar with my daily stresses and all the things I am facing. While others may have a hard time understanding how I can be a caregiver when my world has fallen all around me, Maureen immediately gets it. As she said, I am guided by responsibility and my commitment to those I love. So though I would like to jump out of a window because of the painful disintegration of my marriage and how I have been treated, I do not! I do not because my parents need me, so as long as someone needs my care, I find a way forward. But as Maureen says.... it won't always be this way, and then what? It is an excellent and profound question. The then what? It is not an area I like to visit or explore too often, because it takes me to a very dark place. I am signing off for today, and can only hope tomorrow will be a better day. 

Sunday, December 7, 2025

Sunday, December 7, 2025

Tonight's picture was taken in December of 2003. Mattie was a year and a half old and that Christmas we took him to Los Angeles to celebrate the holidays with my parents. My parents had grapefruit, orange, and lemon trees in their backyard. In typical Farmer Brown fashion, Mattie loved picking fruit. But it wasn't only about the picking, it was about sorting, stacking, and carrying the fruit around. It was a wonderful learning lesson that took place in the open air, as we learned about growing fruit, harvesting the fruit, and counting and sorting the fruit! How I miss those simpler days. 

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

Saturday was NOT a good day. I knew I couldn't leave my dad in the emergency room alone and handle being admitted to the hospital without my support. We arrived at the ER at 7pm on Saturday and my dad did not get admitted to the hospital until 3:30am. Thankfully I stayed because at 3:30am, the nurse needed to do an intake on my dad and he would have been clueless. My dad still has no idea why he is in the hospital, what happened, or any information about himself including the medications he takes on a daily basis. By 5:30am, I had it, I had to drive home with my mom. 

When we got home, for Indie, it was the start of the day, so she was mobilized and I managed her, the laundry, and other chores. By 7am, I had to lie down, and I slept until 10am. At 10am, my mom was moving about and making a ton of noise. By the time we arrived at the hospital today, my dad was in a panic. He wanted to know where we were and why we haven't been with him all this time. I had to remind him that I was at the hospital for over ten hours on Saturday! He had NO RECOLLECTION. In fact, when we arrived, my dad was very disoriented and thought he was in a hotel. After about 30-40 minutes of talking to him, he stabilized a bit. 

But it was a challenging day as more tests were run on him. That may not sound hard, but for a 90 year old with osteoarthritis, any movement is like hell on earth. He has been transferred to so many scanning tables, that now he has severe back pain. It is so bad that he can't lift his arms and he is screaming in pain. His brain bleed appears to be stable, and now I will have to add a neurologist to our specialist list. Lucky me! My life is filled with juggling doctors and issues. From a hospital stand point, my dad looks stable. I know tomorrow the pressure will be on to discharge him because medically there is nothing they can do for him. The issue is he can't stand, walk, or do anything independently. I started this dialogue tonight with the hospitalist, but tomorrow will be key. The problem is I can't be there in the morning, as I have my mammogram scheduled, and some things I just WON'T reschedule, as I have to keep myself healthy in order to be able to help my parents. 

Later tonight, the doctor ordered a back x-ray for my dad because she wanted to make sure she hadn't missed something regarding his pain. A transporter came to get my dad from the room. Watching them transfer my dad from his bed to the transport bed was painful as he was screaming the whole time and frightened. Typically I go down to the x-ray area with him, but today I was too tired. Big mistake. He was transported down, and then left in a waiting area with other patients all around him. He waited there for over two hours! I think during that time, he worked himself up into a silly, was scared, angry, and thought that the man who transported him to the x-ray area died. Which did not happen, but with moderate stage dementia, connecting the dots isn't straightforward but zig zag! By the time my dad got back to the room, he was in a state! He was so hysterical and was convinced he had something gravely wrong with him. At which point, I literally gave him a lecture. I reminded him that Mattie was 7, had cancer, was dying, and in many ways was a MUCH better patient than my dad. Well talking about Mattie and Mattie's experiences was like a trigger for my dad. A switch in his brain flipped and he became more rational! The power of Mattie Brown. 

We spent six hours in the hospital and when I got home, I was surprised by my friend Carolyn. She left me goodies and Christmas gifts. When I am stressed out, I turn to sugar, so several of these tasty treats have already been consumed. 

On another note, speaking of sugar, my dad's nurse was giving me a lecture today about my dad's sugar levels. Seriously I was having NONE OF IT! I told her.... he is 90! If he wants a cookie or treat, he is going to get it! To me life without sugar isn't worth living and I do not believe in denying a 90 year old, if this is going to make him happy! 

After a long two days, it is so special to be reminded that I matter and I deserve so much more than I have been dished out. 

Saturday, December 6, 2025

It is 1:30am and I have been in the emergency room with my dad since 7pm. When he woke up this morning I knew something was wrong as he asked me for a tape measure while he was still in bed. Why? Because he thought he was moving and had to measure his bed. His confusion, disorientation and weakness continued throughout the day! I knew I had to do something. I called his cardiologist who suggested I go to urgent care to check his electrolytes since he started a diuretic! 

Note to self…. skip urgent care with a 90 year old! They can’t do testing and get same day blood test results. So I took my parents to the hospital as I didn’t know what I was dealing with and in his weakened state he could fall and injure himself. 

We got the A team in the ER! I love the doctor! My dad is dealing with an infection of some sort and a small brain bleed. I met with the neurosurgeon team and for now they are watching the bleed with the hope it clots up and doesn’t expand. We await another ct scan in six hours. But they wanted to know what I elected to do if the bleed expands and I’m not present! I said, I would want him to be operated on otherwise he would die or be incapacitated.

I’m worn out, still in the ER and awaiting admission! I just can’t leave my dad as he’s super confused, can’t answer questions or advocate for himself! As a recap, this is my dad’s third hospital admission this year! Even before I got to the hospital today, I was exhausted! Now there isn’t a word in the English language for my current state!