Tuesday, December 23, 2025

Tuesday, December 23, 2025 -- Mattie died 825 weeks ago today.

Tonight's picture was taken in December of 2005. Mattie was three years old. That day we took him to Tower Oaks, a restaurant in Rockville, MD. Outside the restaurant is greenery and a small pond. Mattie absolutely loved this space, which was why I chose to take this photo there to feature on the front of our Christmas card. I will never forget that smile. 

Quote of the day: There are no goodbyes for us. Wherever you are, you will always be in my heart. ~ Mahatma Gandhi

This morning, while my dad was having his physical therapy session my friends came over for a visit. This is my friend, JP, from Boston. He is my friend, Ann's cousin.  

My life is laborious and managing non-stop crises from moment to moment. Having others visit instills another perspective, a breath of fresh air, and a diversion. It added excitement to our day, but once everyone was gone, it felt like I returned to my usual caregiving vacuum. I actually do not like holidays, because there is a level of quiet that comes over the neighborhood and our roads. It just seems to heighten my isolation.  

Ann took the selfie of all of us together. Pictured are:

Ann, holding her phone, then

JP, me, and my friend Tanja, and behind us were Ann's Aunt Helen and my mom!

This afternoon, after taking my parents out for frozen yogurt, I came home and visited my neighbor, who is recovering from a fall. When she saw me, she said..... YOU LOST MORE WEIGHT? As she is worried about me. We chatted for a while, I helped her with a few things and then headed home to cook dinner and also thoroughly clean my Christmas turkey. 

I love Empire turkeys, and this fellow got a good bath, remaining feathers plucked and now it is marinading in the refrigerator with orange marmalade, lemon zest, lemon juice and herbs!

While eating dinner tonight, I noticed my dad did not eat his dinner. When I asked him why he wasn't eating, he said he was full! I am not sure how that was possible since he did not eat much today! There are many things I despise about Alzheimer's disease, but one of the main things that is hard to take is it makes the person very narrowly focused. Not unlike a child, the only focus and concern is for one's self! My dad has no appreciation for what I balance, he has no comprehension of my divorce and the circumstances behind it, and he has absolutely no concept for the financial gymnastics I play each month. Most days I can handle this and put it into context, but then a day like today, I just can't! Especially when he asks me to do ten things at one time. My joke is that my dad apparently thinks I am an octopus, who has multiple arms to manage each demand he throws out at me. 

Monday, December 22, 2025

Monday, December 22, 2025

Tonight's picture was taken in December of 2002. It was Mattie's first Christmas with us! I don't know if you can see the pacifier ornament behind us on the tree? Ironically I still have this ornament, but not the cutie I was holding. When you look at this photo, Mattie looked like the picture of health. I remember that sweet bundle of energy, and no matter how many Christmases pass, I will never understand why cancer striped my identity of being a mom. Priceless face, smile, and boy!

Quote of the day: Trees quiet without the birds, my heart quiet without you. ~ Terri Guillemets

Today was my dad's first day back at his memory care center since his hospitalization. He wasn't eager to return, but I felt it was important for him to have the mental stimulation. Naturally before I allowed him to return, I talked to the staff and requested that someone shadow my dad whenever he is moving, as he needs supervision. It was a busy morning because my mom had a physical therapy session at home and I also had a gardening crew over helping me cut limbs off of trees, shape bushes, and most importantly clean off the roof and gutters of leaves. Though we have leaf protectors on the gutters, they still need cleaning off, as leaves tend to pile up on the gutter covers. Last year I got out a ladder to deal with leaves above the garage door, but this year, the team who helps me maintain the outside said..... VICKI do NOT get up on a ladder. You have way too much going on and people who need your support! So I listened!

As crazy as this sounds, just hearing people working outside the house today made me very edgy! I have no idea why, but the noise of saws, blowers, and other equipment practically had me jumping out of my skin. So while feeling that way, I took on a task!  

As I mentioned last night, each day before Christmas, I am prepping a different dish. That way, on Christmas day, all I have to do is cook everything. There is no way I could host a dinner and juggle my dad without all this prep work. But honestly, I am better working and moving! As cooking, cleaning, and gardening are my forms of therapy! 

Today, I prepped stuffing for my turkey. When I got married, I was given a cookbook from a local Boston farm. This recipe is from this cookbook, but I have modified it over the years. This stuffing has NO meat in it. It is comprised of bread, onions, celery, apples, cherries, chicken stock, butter, wine, and parsley. Since my dad LOVES stuffing, I made a large quantity of it this year!

By mid-day, I stopped chores and took my mom out for tea. We haven't been for tea in two weeks! When we walked into Starbuck's the general manager came over to talk with me. He said that everyone working there was worried about me! I explained to him what had happened with my dad, but it was nice to know someone noticed I wasn't there! Some days I think if I just disappeared, who would notice?

I received many gifts from friends today. This package came from California. My mom's friend is a baker and in my opinion she makes the best gingerbread cookies. Every December she mails me a tin of cookies! She says she wants to picture me sitting with a cup of tea and a cookie, and taking a minute to myself! What a beautiful wish! 

My friend Heidi mailed me a wonderful box of chocolates! Can anyone ever have enough chocolate? Well not in my house! How did I meet Heidi? The irony is Heidi got to know me first through this blog! After Mattie died, I attended a Zumba class. When I walked into the classroom, Heidi happened to be there too. She knew me, but I did not know her! She came over and gave me a big hug! Seriously I had no idea who was hugging me, until she told me she felt like she knew me from my writings..... and that is how our friendship started! 

As I mentioned before, I sometimes despise getting the mail. As there are always surprises in it, and by surprises I mean bills. I was awaiting a particular invoice that came in today, but when I looked at the amount, I almost flipped out, as the amount was double what I was expecting. I even called the company, because I thought there had to be a mistake! There wasn't! I am not going to get into it here, but this was a financial decision my dad made years ago, and frankly it wasn't a wise choice. I literally was screaming around the house today and my conclusion is I always relied on the two men in my life to look out for my financial future. That was a royal mistake! I was always treated like a person who couldn't understand numbers and therefore others should be making these decisions for me. Well what I have learned since my divorce is that I should have maintained all the financial decisions. Sure I am not an economist, I am not an investor, or mathematically oriented, but I am a logical thinker, understand the flow of money, and have common sense! NEVER again, will I ever rely on ANYONE to manage my life or my finances. 

My agitation over this mailing made my mom very upset. All of this is devastating for my mom to witness what has happened to my life over the last two years. I have to remember, she is a mom who has seen her daughter decimated. Any case, I switched gears and told her I was going to wash, color, and blow dry her hair. Normally I take her to the salon, but her salon appointment never happened because of my dad's hospitalization! Any case, this activity stabilized her and I have to remind myself, that issues, problems and crises, can't be shared with anyone in my house. Instead, I must absorb these issues and manage them alone. 

Deeply grateful for every note, card, gift and form of support. While out today, I heard a Dolly Parton song playing, called Hard Candy Christmas. If you have never heard it, I attached it below. But some how it is a song that gets me every time I hear it as my family went from three, to two, and now to one... making Christmas very hard!

Sunday, December 21, 2025

Sunday, December 21, 2025

Tonight's picture was taken in December of 2006. Mattie was four years old. That Christmas we took Mattie to Boston for him to spend time with his paternal grandparents. Though it was cold out, my former mother-in-law knew Mattie needed to go outside and move! So literally they were playing in the sandbox in December! I am posting this photo today because it is my former mother-in-law's birthday. I have been in her life since I was 19 years old and spent a great deal of time at her house over the last 30+ years. Though legally I am no longer her daughter-in-law, we share a bond that can't be broken, and we most definitely are committed to Mattie's memory and legacy. 

Quote of the day: I love you past the moon and miss you beyond the stars. ~ J.M. Storm

Over the course of the last two weeks, my mom has been exhausted and dealing with cold like symptoms. Certainly running back and forth to the hospital for my dad did not help her situation. But she is not improving. This morning, I swabbed her nose for the Flu and Covid, and she is negative. However, I contacted her doctor because I felt she needs antibiotics, given her extensive lung condition. He agreed, especially as the holidays are coming up, we want to stabilize her situation. 

So after getting my dad showered, dressed, and downstairs, I gave him a hair cut and then had him relax in his recliner. I then ran out to the pharmacy and back to the grocery store. Running chores requires me to think through logistics, because I can't leave my dad for long as my mom truly can't care for him. 

Later in the afternoon, I took them out to brunch, at the restaurant we venture to every Sunday. It was our first time back there in two weeks. Of course no meal is ever complete, without contending with my dad's irritable bowel syndrome. All I know is my parents are lucky I have a strong constitution, because after cleaning him up, most people would be sick to their stomachs. While in the bathroom, I could hear two women talking to each other. Each one was complaining about wrapping Christmas gifts and other (what I deem as) more normal tasks and chores. As I was listening, while cleaning my dad in one of the stalls, I wanted to scream out and say.... really, you have NO IDEA how lucky you are to have parties to go to, the money to wrap and exchange presents, and if I could trade childhood cancer, seeing my parents decline, and my divorce with you, I would do it in a heart beat. 

When I got home, it was back to back chores..... packages of supplies delivered, laundry needed to be folded, dishes put away from the dishwasher, and also this week, I have been treating my mom's feet with Epsom Salts, as she has intense pain in her toes. This happens every Winter, because of odd gait (walking with toes in the air), her toes rub against her closed toed shoes and it generates pain. She does a lot better in the summer wearing sandals. 

I am hosting Christmas dinner at my house and in order to pull this off, I have to address this methodically. I prep one dish a day. It gets prepped stored in the refrigerator and not actually cooked until Christmas. I have done this routine for years, even before my divorce. It is the only way to manage a big meal. Of course, whenever I make our family's sweet potato souffle, I am reminded of being married. We did everything together and truly tasks and life in general went smoother and was better when I have my other half. 

Saturday, December 20, 2025

Saturday, December 20, 2025

Tonight's picture was taken in December of 2002. Mattie was 8 months old and naturally it was a very exciting time for us, as this was our first Christmas with Mattie. That year, we experienced a snow fall on the first Saturday in December. It was another first for Mattie.... seeing the white stuff. I figured with the snow on our deck and Mattie in his Santa suit, it would make for the perfect photo to be featured on our family holiday card. We must have snapped 30 photos that day, but this was the photo I chose for the card! I absolutely LOVED Mattie's smile here and the fact that his hands were in motion (a tell tale Mattie sign!). 

Quote of the day: Cherish those people who have the ability to touch you and still be thousands of miles from your presence. ~ Rachel Wolchin

This morning, I woke up with this photo collage in my email in-box. I knew immediately what and where this was.... Burbank, CA. My parents used to live in this neighborhood, and in fact, I went to high school in California, so this neighborhood is part of my past. When I would visit LA at Christmas time, my mom and I always used to go for walks and I would snap photos of all the amazing houses and decorations! Truly my life looked so so different just a few short years ago. Then I was happily married, saw that I had a future (yes without Mattie, which was hard enough, but somehow we found a way forward together), and could appreciate the beauty of decorations and ornaments (though I did not have any of my own up and on display) around me. 

Today was day three of my Dad having a physical therapy session. So that is three days in a row. After today's hour long session, this therapist also agreed..... my dad is safe enough to walk in public and doesn't need to be transported around in a wheelchair. My dad has proven that he can walk several minutes safely without needing a break and all three therapists feel his balance is good. That said, the wheelchair remains in my trunk just in case, but not having to lug that thing around and maneuver my dad in it is a BLESSING. Truly I count my blessings! I am grateful that I had the wherewithal to remove my dad from the hospital and with my supervision, I have been able to stabilize him. That is this year's Christmas miracle!

Later this afternoon, I took my parents out for lunch. This is our first meal out (not including going out for frozen yogurt) since my dad's hospitalization. We go to our local diner every Saturday. We know the manager and practically everyone who works in there. Today we even met the owner, who lives in New York but was in town visiting. While being out today, I noticed something..... 

I was able to appreciate all the decorations around me and loved hearing the Christmas music. It isn't the new stuff, but the Rat Pack genre. I can't hear Frank Sinatra, without thinking about my marriage. My grandmother was not a Sinatra fan, so I did not grow up appreciating him, until I got married. Once I heard Sinatra sing, watched him dance, and act, I was hooked! Which is why, my wedding song is.... The Way you Look Tonight. 

But here's the cute story about all these decorations. Two weeks ago, the diner was not decorated. I was talking to the manager, who is a charmer. She has a degree in interior design and she was telling me about some of her ideas she wanted to incorporate into the diner. One of them was stringing ornaments from the ceiling. Do you see them? The photo doesn't do it justice, but sitting under these ornaments was magical! 

The manager also has a live tree for all her guests to see and appreciate. I loved seeing this beautiful tree, as our trees used to look just like this! I called the manager over twice to comment to her on all the decorating she did! It is so tasteful, festive, and elegant! But what it also achieved for me at least, was feeling like I was transported inside a Hallmark movie! Which if you know me, is a MAJOR compliment. If someone said I could spend 24 hours on a Hallmark set, removed from my daily grind and pain, I would sign up tomorrow. 

Any case, when I see someone go above and beyond, someone who actively works to bring joy and happiness to others..... I call it out! Which is why I gave the manager feedback! She is a busy professional, so it would have been understandable if she did minimal decorations. But instead she put her heart into the space and it shows! But it doesn't just show, it creates a warm, inviting, and festive atmosphere for anyone dining in this space. Just like the manager gave us all this visual gift, she felt that my words of thanks were a major gift to her. This is the beauty of connecting with people..... this has always been a more significant gift to me than anything I could possible get from under a Christmas tree! I have always loved talking and connecting with people, and I have to remind myself that my divorce is not about me, and therefore, I can't let it define me, my character, or what I hold dear. 

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!