Saturday, September 10, 2022

Saturday, September 10, 2022

Tonight's picture was taken in September of 2008. We took Mattie to New York City to consult with oncologists and surgeons there! It was not a positive healthcare experience to say the least. In between appointments, we wanted to lighten Mattie's mood so we went touring around with him, stopping at the famous FAO Schwarz. 

Quote of the day: There’s no tragedy in life like the death of a child. Things never get back to the way they were. ~ Dwight D. Eisenhower

It's been a day already and it isn't even 3pm. I dragged myself out of bed today in order to get the process going. There is no sleeping in, because if I do, there would be no breakfast and forget about my dad getting up, showered, and dressed. It is a heavy burden that weighs on me daily. On top of this existence of course, was the anniversary of Mattie's death this week. My parents are no longer intact enough to have serious or meaningful conversations with and frankly given the nature of their cognitive decline they have turned inward. The world revolves around them, their needs, and believe me their needs take up an entire day. Yet the passing of Mattie is something that Peter and I walk with daily and not having the time, space, and ability to process our thoughts and feelings, we get frustrated. 

I woke up in a terrible mood today. The flu shot from yesterday slowed me down, and then everything seemed to go wrong today. When I went to make my parent's bed, my mom had put a china plate in a bag that was sitting on her bedroom chair (not a good place to put a plate by the way). As I went to reach for her dirty laundry, the bag fell on the floor, and the plate broke in thousand pieces. While dealing with that mess, my dad was up in the bathroom and walking around without clothes on. When I finally got the broken china picked up, I got my dad in the shower. He only proceeded to flood the bathroom floor. So I got towels out to deal with that. Get the picture? Today was also linen day, in which I change their entire bed. I try to do this every two weeks. My dad literally have 15 pillows, so pillows alone practically fill a washing machine. 

After serving my parents breakfast and cleaning it up, I did brain games with my dad and got him to do part of his walking routine. But he was very focused on the bathroom today. Unless he has a bowel movement, he can make all of us miserable. My life is programed around the bathroom and food. Taxing is all I can say. Once my dad was in his recliner, I took my mom to the farmer's market. Something that should be fun is a chore. I have gotten to know some of the farmers and they like talking to me. Which means that my mom has to stand in one place, something that she has a harder time doing these days. So while talking, she gets irritated and makes me neurotic. Needless to say the drive home was miserable and she complained of pain, which meant that as soon as I walked in the door of the house, I had to get her Advil and massage her neck. I am running a nursing home in every sense of the word. 

What gets me upset and frustrated however is the fact that I know work for the Foundation is piling up all around me and it is hard for me to find the time and ability to focus to get it done. In fact, this month we have a psychosocial campaign going with the American Psychological Association. They have helped us promote each of the 15 Psychosocial Standards of Care, Standards which were our vision in 2012. These historic evidence-based Standards define what children with cancer and their families must receive to effectively support their psychosocial needs from the time of diagnosis, through survivorship, or end of life and bereavement care.

Here are some examples of the Instagram postings, which I am also publicizing on Facebook and Twitter!

Friday, September 9, 2022

Friday, September 9, 2022

Tonight's picture was taken in September of 2008. Mattie was home between hospital treatments and got this cute bird as a gift. This bird wasn't your ordinary fellow. Instead he played music and moved his body. So Peter and Mattie were mimicking the bird. They were bobbing their heads and flapping their arms and I thought it was priceless. Naturally I had to capture this moment in time! I'm glad I always photographed our lives together, right from the moment Mattie was born. Even the ordinary was photographed and it turns out all of this is now part of Mattie's legacy. 

Quote of the day: Grief is love with no place to go. ~ Karen Gibbs

I was listening to the radio this morning and I heard a clip played capturing a close confidante of Queen Elizabeth's. He recalled an afternoon in which he and the Queen were out and about in Scotland and American tourists stopped him and the Queen and started chatted with them. They clearly did not recognize the Queen. Instead, they not only asked her questions but handed their camera to her to take a photo of them. Check out the link below! To me it is priceless and it speaks to her level of humility. Practically everyone can recognize her face, but instead of correcting the people talking with her and letting them know that they weren't talking to just anyone but her majesty herself, she let it go and played along. 

American tourists once met the Queen and had no idea who she was — so she played a joke on them:

https://www.insider.com/queen-once-played-prank-on-american-tourists-2022-6

It has been another long day. My dad went to his memory care center and then I took my mom for her physical therapy appointment. In the session, the therapist asked my mom whether she could bend down and kneel on the floor. My mom's response was.... of course! I started laughing. I then asked when was the last time that she did this! She said, December! I couldn't help myself, my response was.... in what year? Any case today was another rude awakening for my mom and slowly we are trying to show her that there are things she can no longer do, that her perspective or insights about herself are distorted. In addition, the therapist is working on walking with my mom because my mom doesn't walk heel to toe, but instead shuffles with little steps and mostly walks toe to heel. Also she walks with her hips forward and her head is down on her chest. 

This afternoon, all four of us went for the flu shot. Needless to say, given how I am feeling already and now this shot, I am beyond worn out. I need a break and yet I know there is NOT one in sight.

Thursday, September 8, 2022

Thursday, September 8, 2022 -- Mattie died 13 years ago today. 

Tonight's picture was taken on August 5, 2009, the day Mattie's cancer was diagnosed as terminal. That afternoon, Mattie and I went out to the hospital rose garden, between testing sessions (ultrasound and CT scan). Mattie understood that something was wrong, and though I tried to down play things, Mattie was very intuitive and sensitive. On our way to the rose garden was this elephant art therapy statue. The display tiles on the elephant change on a regular basis and children and health care workers create these tiles. Mattie loved one of the tiles that was a picture of Curious George. It was created by Kathleen, one of Mattie's nurses, in honor of him. That tile always made Mattie smile. Smiling even on the hardest of days. To me Mattie was and will always be incredible. 

Quote of the day: Grief can be a burden, but also an anchor. You get used to the weight, how it holds you in place. ~ Sarah Dessen

Today marks the 13th anniversary of Mattie's death. Given all that I am balancing, I honestly did not know if we could visit Mattie's memorial tree. But then my lifetime friend, Karen, texted me last night asking what we were doing today and mentioned the tree. Her message made me say to myself.... yes I must go to Mattie's tree and my parents will just have to deal with it. I am glad I made that decision and that Karen got me thinking about this. 

Peter and I got to Mattie's school around noon. The playgrounds were FILLED with children. Literally I felt like I was surrounded by mini Mattie's! In fact, one child in particular reminded me of Mattie's friend, Paul. Yet Paul is NO long five years old, he is 20! Nonetheless, I felt like I was right back in 2007, when Mattie was in kindergarten. Mattie's white swamp oak is thriving and looking beautiful. We put ribbons around all three of Mattie's trees.... or as I call it, Mattie's grove. 

This is the placard in front of Mattie's official tree. It reads... Tree given in memory of a friend and classmate, Mattie J. Brown, by the parents and children of the class of 2020 (May 27, 2010).

There are many wonderful ornaments on Mattie's tree. Including plastic donuts, legos, hotwheel cars, and of course butterflies. 

A close up of some of the whimsical ornaments. 

On this day, 13 years ago, Mattie died from osteosarcoma. It was a 14 month journey of high dose chemotherapy, limb salvaging surgeries, a sternotomy, experimental treatment, and cyberknife radiation. Mattie was my life's greatest teacher, and he showed us that CHILDHOOD CANCER IS NOT JUST ABOUT THE MEDICINE. 

Within three months of starting treatment, Mattie was diagnosed with clinical depression, anxiety, and medical traumatic stress. Issues he did NOT have before receiving chemotherapy. Mattie was prescribed psychotropic medications, but very little research had been done on the interactions of these meds with chemotherapy on children. So in essence each day of Mattie's cancer journey was traumatic, in which we were constantly making life and death decisions and in the process we faced grief and loss daily. All this sadness and trauma does go somewhere! It builds up in our minds and bodies. 

Those of us who lost a child to cancer, may look physically "normal" to the world, but that is just our façade. Instead, we have an internal fight each day to get up, to try to carry on our child's legacy, and to try to maintain our own physical health (which is ironically compromised from the incredible stresses and forever loss that we continually face), and to find the hope, love, and support needed to navigate life without our child. 

I will never forget the day Mattie's cancer diagnosis turned terminal (August 5, 2009). On that day, Mattie and I went to the hospital rose garden and he jumped into my lap and wanted to hear about the day he was born. A story Mattie loved hearing me tell, and usually wanted to hear it during challenging times. I always share my "Dearest Mattie" story on Facebook (found below) on this day. This was a story I wrote and had on display during Mattie's celebration of life. 

Mattie is forever missed, he has left a hole in our hearts and spirit. We are passionate about keeping his legacy alive at Mattie Miracle and taking the lessons learned from him to help other children facing their own cancer journey. 

Ooga Booga (in Mattie-ese, that means I love you!)

-----------------------------

My Dearest Mattie,

It is said that parents love their children right from the moment they are born. However, in your case, our love for you began as soon as we learned we were going to have a baby. In fact, right after seeing your sonogram picture, we felt like proud parents. We posted those pictures everywhere. We shared these pictures with practically anyone who would listen or showed interest, and each September when I taught prenatal development in my undergraduate human development class, out would come your sonogram pictures to illustrate my points. Even my students got a sneak peek at our baby, a baby who would have a profound and meaningful impact on not just his parents but also every community he touched. Daddy and I did not only love you, we FELL IN LOVE with you, and that love grew stronger with each day. Your energy, spirit, love for life, intellectual challenges, sense of humor, and loyalty to your friends and family were only some of the wonderful traits we always admired in you.

This video is a tribute to you and your wonderful, yet short life. It seems fitting as we celebrate you, and say good-bye to your physical presence that I share the story about how you entered the world. The story of your birth had to be one of your most favorite stories to hear, and I found during times when you were reflective, overly tired, or in need of hugs and tenderness, the request for this story arose. In fact, I remember on August 5th, the day we found out that your cancer metastasized everywhere, you and I were sitting in the hospital’s rose garden, and you requested the story. It was almost as if you knew this was going to be a bad day, so in essence we might as well brace ourselves, cuddle, and prepare for this together.

Here is the story I always shared with you. A story Daddy and I will never forget. On April 2, 2002, at 11pm, I decided to head to bed. I was anxiously awaiting your birth, and as your due date approached, I couldn’t help but wonder, when will “the baby” be coming? I was restless and uncomfortable, so while in bed, I began to watch television. I was having trouble concentrating on what I was hearing, mainly because you were kicking up a storm inside of me. At which point, the kicking became so intense, that I literally felt something pop. You clearly wanted OUT, and you were going to kick your way into the world on your terms. Naturally after feeling this pop, I looked down at my tummy, and when I jumped out of bed, I realized my water had broken. This only happens to 25% of moms, and in retrospect, I should have guessed that this was just the beginning of how different our lives were going to be together. I immediately called the doctor and told her what happened. She asked if I was in pain, which I wasn’t, and she instead told me to get a good night’s rest, because my baby was going to be born the following day. Well I can assure you after hearing this news, sleeping was the farthest thing from our minds.

So on April 3, 2002, Daddy and I headed to the hospital and we were admitted to the maternity unit at 8am. The labor process began, but it was a VERY slow process for me, and at times as you moved inside my tummy, Daddy could see your head pushing against my backbone. Needless to say Dr. Mike, the anesthesiologist, became my favorite doctor that day. The hours kept rolling by, and still there was NO sign of our baby! I was getting weaker, I developed an 102 fever, and by 11pm I really had no energy to give birth to you. In addition, to how I was feeling, your oxygen supply was getting cut off, and your chin was positioned in such a way that would make the birthing process almost impossible. So it was at that point that the doctor recommended an emergency c-section. Things began to happen very quickly around me. I was signing paperwork for surgery and Daddy was being transformed by putting on a bunny suit so he could enter the operating room.

I had never been in an operating room before in my life, but I really wasn’t concerned at that point about myself. I was solely focused upon you. I was wide-awake for the c-section, but unable to see the process, which as you know, was probably a good thing. Daddy on the other hand found the whole thing very exciting, and began to videotape and take pictures of the surgery. Literally a team of people surrounded me and I will never forget Dr. Mike, the anesthesiologist who sat by my side, and talked with me and did whatever he could to keep me pain free.

When you have a c-section, your arms are strapped to the operating table, so I couldn’t move, and directly over my head was what appeared to be a rope with a clamp that was holding open my abdominal cavity. Normally by this point I would have passed out, but when it came to you, I developed strength I never knew I had. As the doctor began cutting, and finally got to you, the first thing she said was, “what is this?” That is NOT what you typically hope to hear when having a c-section. The doctor let me know that I had a grapefruit sized tumor on my bladder, and my immediate thought was, did this affect the baby? The next thing I knew, I felt her tugging, and I heard the loudest cry ever. Now here is the part of the story that I know was always your FAVORITE! I would always try to replicate the sound I heard coming from you that day, a sound that will always remain in a parent’s ear. It was a very large WAAHHH! WAAHHH! At which point the doctor told us two things: first, that you were one of the most beautiful babies she had ever seen, and second, that you had quite a set of lungs on you! I concurred with both statements.

The doctor then brought you over to me, and she felt that I needed to be the first person to touch you. So despite my arms strapped to the table, my right hand miraculously reached out and grabbed your tiny, soft, and cute foot. It was a moment I will always cherish, a moment in which I will never forget, and a moment I am so happy you too enjoyed hearing about. Each time I retold the story I felt as if it further bonded us together, and I always enjoyed hearing your comments, thoughts, and reactions to your story.

Seeing you made Daddy very happy! Though he was worried about me, since after the c-section, I had to have bladder surgery to remove the tumor, we both agreed that Daddy should stay with you and accompany you to the nursery. It is there that Daddy got to see you cleaned up, he learned that you weighed 6 pounds and 13 ounces, and that you had high Apgar scores of 8 and 9. Within an instant, Daddy became one of your fiercest protectors, and he cared for you for five days straight while we were in the hospital together. In fact, Daddy is the first person who changed your diaper, and though those were five very challenging days in the hospital, they were days that helped us form our strong family ties. Ties that were imperative and that we relied on for seven years of your life!

Your presence is so greatly missed. Nothing seems the same, is the same, looks, feels, or tastes the same without you in our lives. May you always know that Mommy and Daddy love you, cherish you, and that feeling will remain with us forever and always. Good-bye my Mooshi Moo angel and goodbye Daddy’s best buddy. With love from Una Moon and Daddy!

Wednesday, September 7, 2022

Wednesday, September 7, 2022

Tonight's picture was taken in September of 2008. Mattie was in treatment for about a month by that point. Our neighbor came over to deliver "Dandy Dog" to Mattie. Her friend creates these life sized stuffed animals and she wanted Mattie to have his cowboy. Mainly because she wanted Mattie to know that he was rugged and tough like a cowboy and he needed to tap into that strength to cope with cancer. As you can see, Mattie was showing us that he and Dandy Dog were about the same size. The generosity of our support community while Mattie was undergoing treatment was truly incredible. Never to be forgotten. 

Quote of the day: The reality is that you will grieve forever. You will not ‘get over’ the loss of a loved one; you’ll learn to live with it. You will heal and you will rebuild yourself around the loss you have suffered. You will be whole again but you will never be the same. Nor should you be the same nor would you want to. ~ Elisabeth Kubler-Ross

Yesterday I was having a tough day, which was reflected in the blog. It is very difficult when you feel like life hasn't brought you what you wanted, given you the opportunities you would have liked, and you feel like your life is slipping by. Right before I went to bed, my lifetime friend, Karen, sent me this photo. I found this saying very meaningful and it is amazing how a message can turn your outlook around! 

It was another busy day with my dad at his memory care center, taking my mom to physical therapy, and then taking my parents out to eat. While at the restaurant, I was tracking Peter's flight back from Boston. Thankfully he is home safely now. Sunny and Indie (and me) are thrilled. 

My colleague and friend, Lisa, sent me an article today entitled, Walk this number of steps each day to cut your risk of dementia. Since my dad was hospitalized in 2020, all I have been hearing about is walking. Getting my dad up, walking, and counting steps. I think this short article highlights the importance of walking and it reminds me...... to put on my pedometer! I have no idea how many steps I take in a given day. Mainly because I do not always have my cell phone on me to track my steps. 

Basically the premise of the article is that walking and obtaining a certain number of steps per day (112 steps per minute), and particularly walking at a certain speed/rate, has been found to decrease the likelihood of developing dementia. Specifically it was found that exercise boosts levels of a protein known to strengthen communication between brain cells via synapses, which may be a key factor in keeping dementia at bay.

If dementia is inherited, then my future doesn't look very positive. However, I compare myself to my dad, and from a physical standpoint, we have lived a night and day difference. My dad has always been a much more sedentary person and unfortunately I do think his choices about NOT walking have come back to haunt him. However, in all reality, my dad isn't aware of his issues now, but given that I am providing his care, I would say that his behaviors have directly impacted me. 

If you want to learn more, check out these two links below:

Walk this number of steps each day to cut your risk of dementia

Association of Daily Step Count and Intensity With Incident Dementia in 78 430 Adults Living in the UK

It is hard to believe that tomorrow is September 8, marking the 13th anniversary of Mattie's death. For the last 12 years, September 8th has been sunny and warm. Just like it was in 2009, on the day Mattie actually died. Tomorrow it is scheduled to rain. I am not sure why that is important to note, other than it is different. What I do recall about September 8, 2009, was that it was a beautiful weather day, I MEAN GLORIOUS! But my body, mind, and spirit felt like the world was coming to an end, and I frankly did not understand how the sun could be shining and that earth was still revolving! Now 13 years later, I am certainly more physically stable, but emotionally the impact of Mattie's death still reverberates and impacts every aspect of my life. 

Tuesday, September 6, 2022

Tuesday, September 6, 2022 -- Mattie died 675 weeks ago today.

Tonight's picture was taken in September of 2008. I am quite certain that at the time I captured this photo to document all the packing boxes we had in our two by four of a hospital room. All of Mattie's treatment team knew he LOVE creating with boxes. So when big boxes came in, they saved them for Mattie. I did not mind one bit to have them stacked all over the room. I was open to anything and everything that engaged Mattie, entertained him, and brought some sort of happiness to his life. Mattie used these boxes to create just about everything such as cars, boats, and even an apartment building. 

Quote of the day: It is never too late to be what you might have been. ~ George Eliot

George Eliot's quote resonates with me, and frankly came at the right time. I needed to hear this! Why? Well several things set me off today. Primarily I have been reflecting upon the intense caregiving roles I have taken on in life. Particularly during crucial times in my professional development, caregiving has popped up, diverting my goals, wishes, and trajectory as a professional. 

Case in point, in 2008, I was just elected to be the president of the American Mental Health Counselors Association. A professional association representing over 6,000 professionals nationally. I was the youngest person to ever be elected president. I had high hopes for my year as president and felt this would be the launching point for other more significant leadership positions. What happened? Mattie was diagnosed with cancer. Though I was officially president, I never performed my role as president. Understandably why I couldn't but I do consider that turning point as the beginning of the end of my mental health career. 

Once Mattie died, I couldn't see myself returning to academia or professional association work. I was broken in all senses of the word. But then we created Mattie's Foundation. The Foundation has been my second baby now for 13 years. Working on it full-time, we have been able to accomplish many great things and of course I had more planned for the future. But again, caregiving has taken over my life and diverted my goals, hopes, and wishes. It is a vicious pattern, a cycle, that can truly frustrate me, make me feel hopeless, helpless, and as if I don't matter. That my sole mission in life is to meet the needs of others. Mind you I don't think I am the only woman in this boat, but since this is Mattie's/my blog, naturally I am reporting about my own thoughts and feelings. 

So what brought all of these reflections to the surface? Well this morning while having breakfast (mind you I never eat in peace, as I am always jumping up and down meeting someone's needs) my parents were talking about their accomplishments in life. Particularly my dad's career. Of course I can think outside myself and can admire what each of them accomplished. But at that moment in time, it struck a chord. Instead their comments set me off, reminding me once again that I can't possibly accomplish what I want, develop as a professional and forget about having any sort of career, because I am too busy running what I deem as an in-home nursing home. 

In the midst of having these feelings, I received an email from a hospital social worker in Tennessee. She wanted me to know that she has a 14 year old child with cancer, who as a result of treatment suffered a stroke. So in addition to enduring cancer treatment, he is now re-learning how to walk, talk, and do basic daily activities. Simply horrific and my heart goes out to his family. Doctors are recommending that he be provided with physical, occupational, speech and music therapy, to try to recover and re-learn many tasks associated with daily living. His insurance will pay for everything but music therapy. The social worker couldn't find any non-profit to help pay for this vital form of therapy. The important thing is that the patient responds positively to music, and I have seen his therapy plan and read the goals his therapist has for him. Needless to say, Mattie Miracle is working with this family, so that this teenager can obtain the full scope of therapy his doctors are recommending. I mention this because despite feeling down and lost, I know the work we do and what we can fund makes a difference in the lives of others.  

Life doesn't always bring us what we want or expect. But I know it is still important to try to reach beyond one's self, and in the process make the life of someone else a little better. If I can do this, then perhaps this is my life's success. 

Monday, September 5, 2022

Monday, September 5, 2022

Tonight's picture was taken in September of 2008. Mattie was in the outpatient clinic of the hospital and was creating at the art therapy table. This corner of the clinic was our go-to area. Mattie naturally gravitated to it and his therapists gave Mattie access to all the tools and media he needed to build, design, and be productive. It was interesting the dialogues we had at this table. These weren't prepped or staged conversations, but while busy and doing, Mattie more naturally started talking, sharing thoughts and feelings. Mattie made friends at this table, talked about some of his fears and concerns, and even times when he did not want to interact, he still wanted to create. This creative area was a God sent. 

Quote of the day: Whatever you think the world is withholding from you, you are withholding from the world. ~ Eckhart Tolle

I do not live a normal life, and I do not fool myself into thinking anything else. It is a reminder whenever I attempt to do something typical (like have a friend over), that I realize it takes me ten times longer to get it together. 

My dad was scheduled to have his long time friend stay with us in September. This friend is flying in from England. Not just to see us, but was planning on spending four nights with us. I had to be realistic and explain to him my daily routine. After all if he is expecting to see my parents like they were pre-COVID, he would be in for a shock. I also do not think it is fair to have someone staying in our home, as we follow a very routinized schedule and in between there is a lot of napping (not by me of course!). My dad's friend understood what I wrote in the email, and determined he would stay at a hotel in Washington, DC and we would get together a few times. I think this will be better for him and definitely for us. As my days are filled with chores!

This is what our table and my kitchen island looks like in preparation for dinner today. 

On the buffet today was:

• broiled scallops
• ratatouille
• sauteed mushrooms and onions
• orzo pasta salad (with cucumbers, chickpeas, tomatoes, and feta cheese)
• arugula salad with homemade basil lemon dressing

Sunday, September 4, 2022

Sunday, September 4, 2022

Tonight's picture was taken in September of 2008. Mattie was home between hospital visits. Peter's mom sent Mattie this foam puzzle of the world. Mattie put it together and posed for a photo. When he did this, I told him... It is Mattie sitting on top of the world! He loved that notion!

Quote of the day: Everyone has inside of him a piece of good news. The good news is that you don't know how great you can be! How much you can love! What you can accomplish! And what your potential is! ~ Anne Frank

Last night, I went out to the backyard to look for Sunny. On my way down the stairs, I looked into my flower pot.... and look what I saw? A huge toad!

I did not have far to look for Sunny! He was right by the porch, passed out. As Peter would say.... it must have been a slow night. Meaning no fox traffic!

This morning, I started prepping food for Labor Day. I wanted to make a ratatouille. This was my first attempt and it tastes pretty good. I will see how it goes over. I love having access to my own fresh herbs in our backyard. 

I also made an orzo salad with tomatoes, cucumbers, parsley, feta cheese and chickpeas. 

Tonight I am marinating scallops and cleaned all my baby bella mushrooms. I will take that on and an arugula salad tomorrow. 

I bought a wonderful cantaloupe at the farmer's market and cut it up for tomorrow. Ironically we got this fruit ceramic platter as a wedding gift. I never used it, until I moved into this house. Rather funny I think.

It is 9:30pm, and I finally got a moment to write the blog. I have been cooking, doing laundry, meeting my parents needs, took them to dinner, gave Sunny all his meds and chemo, and also balanced Indie, the cat. Indie is very aggressive about getting her food and attention needs met. 

Case in point, I am trying to type, and Indie is sitting in front of me, demanding attention. Some days I can handle things better than others, but I am very tired, dealing with a chronic migraine, and the demands are just endless. 

At 9pm, I helped my dad upstairs and put him to bed. I put him to bed an hour earlier, because I notice by 10pm, not only is he sleeping in his reclining chair, but he doesn't have the energy to get upstairs. It is my mom who insists that they stay up until 10pm. However, you should note that as soon as she sits on the couch, she sleeps. I have watched the same episode of a show we are watching many times, because she can't get through an episode. Yet insists on staying up. Her sleep pattern is unstable, because once she goes upstairs, she can't sleep! 

When I put my dad to bed tonight, he asked me... do I shave now? I had to remind him that it was night time and time to sleep. He is a shell of his former self and overall it is depressing, exhausting, and it is hard to come to terms with everyday being more of the same.