Saturday, December 31, 2022

Saturday, December 31, 2022

Tonight's picture was taken in December of 2006. This was the year that the Christmas train became a fixture around our tree! To this day, this train continues to surround our tree in memory of Mattie. Mattie was four and half years old and this was the photo we selected for the front of our family Christmas cards. 

Quote of the day: Hope smiles from the threshold of the year to come, whispering, 'It will be happier.' ~ Alfred Lord Tennyson

 

I am quite certain that people do not have a true understanding for what Peter and I balance on any given day. To make a nice sit down dinner, two weekends in a row, is a killer for me. Not because I can't cook, I can. But I am juggling the impossible and therefore adding this to my plate is a nightmare. Thankfully Peter is a big help. But he is tired too, as this daily basis is wearing. What I can say objectively is that we did a beautiful job decorating the house this year. 

I love Hallmark Christmas movies because of the incredible decorations featured. Our house isn't ready for a Hallmark movie, but it is definitely festive. 

This is what our New Year's Eve buffet looked like. 

Our farmer's market ham.... ready to be baked. 

I made a three layer chocolate cake from scratch yesterday! It is one of my favorite recipes. 

Peter and me with Charlotte, our God daughter. She is 6 years old. Of course I can't think of this age without thinking of childhood cancer. This was the age in which our lives changed forever. 

My mom with us! 

Friday, December 30, 2022

Friday, December 30, 2022

Tonight's picture was taken in December of 2005. Mattie was three and half years old. That day we took him to Clyde's at Tower Oaks in Rockville, MD. Outside the restaurant is a little pond. A place Mattie loved to hang out and visit while we were dining at the restaurant. That day I sat Mattie down by the pond and we snapped several photos. This one went on the cover of our family Christmas card that year. Ironically I took my parents to this same restaurant today. This is where Dawn, our favorite server works. I think it is rather ironic that this same restaurant has supported me as both a caregiver to a child and now a caregiver to my parents. 

Quote of the day: Kindness can become its own motive. We are made kind by being kind. ~ Eric Hoffer

Today was another blur. I am so worn out that I literally have to drag myself out of bed in the morning. Since our God daughter and her parents were unable to come over on Christmas, we are having them to dinner tomorrow (New Year's Eve). Really any time I try to look normal and host a gathering, it takes WORK! WORK, WORK, and MORE WORK. Mainly because there is nothing normal about my life or household. Therefore trying to make things run smoothly takes an act of God. 

Peter and I prepped food for tomorrow and I baked a three layer chocolate cake this morning. While my dad was at his memory care center, I also set the table and walked Sunny. Literally from the moment I wake up and until I go to bed, I am moving. Moving, yet not physically feeling like myself. 

A few weeks ago, I bought a ham from the farmer's market. So we are baking the ham tomorrow and making all sorts of sides. This is what the table looks like.... it is ready for tomorrow! 

Thursday, December 29, 2022

Thursday, December 29, 2022

Tonight's picture was taken in December of 2004. Mattie was two and half years old. By this point, Mattie understood the notion of posing for a photo. So unlike the year before, in 2004, I did not have to do any tricks and entertainment to capture a special moment in time. This photo was featured on the front of our family Christmas card in 2004. 

Quote of the day: The need for connection and community is primal, as fundamental as the need for air, water, and food. ~ Dean Ornish

There were several revelations from today. Two of them came while Peter and I were out walking Sunny. I am trying to make a commitment to myself, Peter, and Sunny, for us to get outside and walk together, like we used to. By mid-morning, after all my chores are done with my dad and mom, I try to escape for 90 minutes. The timing works out because with the winter months, neither of my parents want to be outside. In addition, I find after breakfast both of my parents literally need to nap. 

While walking Sunny today, we went into the woods. It is lovely to hop on a trail right from our neighborhood, without having to get into the car. In the woods, we came across a mom with three of her children. The children were playing by a stream with rocks and things. The mom was taking a photo of the kids playing. I resonated with this whole scene, as I was big on capturing all moments, not such special occasions. Peter went up to the mom and asked if she wanted him to take a photo of all of them together! She really liked that idea and she handed her phone over to Peter. After Peter snapped several photos, we continued walking with Sunny. Peter told me he did this because he knows how special photos are to moms! Typically moms are taking the photos and aren't always in the pictures. TRUE, great point! I found Peter's reflections and actions with this mom very thoughtful and what that translates into is that Peter gets how important photos are to me, and also appreciates the fact that I do not have many photos of all three of us together. The ones I do have, I cherish. 

One thing that both Peter and I observed is that our neighborhood is NOT friendly. When I used to walk Sunny in Washington, DC, someone always stopped me to either pet Sunny, ask about him, or to comment on what a "beautiful dog" he was! In some ways, Sunny was like a magnet for conversation! I honestly came to expect this on all my walks. Mind you it wasn't just the first year we got Sunny, it was every year we have owned him. 

Moving forward to where we live now, it is a night and day difference. When we pass people on the street, most don't even make eye contact. They don't even say hi, much less comment on Sunny. NOT one person here has ever told me that Sunny is beautiful, or tried to pet him. It is like we are living on a different planet. The issue is so pronounced that Peter and I are conducting our own psychological experiment. We now go out of our way to say hi and wave to people as we walk passed them. We are profiling people, in hopes of understanding this phenomena and to find a trend to who actually responds. So far the data is NOT looking good! 

So why would people in the city be friendlier? One would think that people living in a crowded space would be more indifferent, protective, and keep to themselves. What is happening in suburbia defies common sense. The only hypothesis I have come up with so far is that people here are used to having more open space and appreciate that, purposefully trying to avoid contact with others while out walking in their community. Of course I don't understand this whatsoever, because to me connecting with others is the greatest gift in life. Another thought is that in the city, people become very attuned to who is safe to talk with and who one should try to avoid eye contact with. Therefore with that in mind, I feel people in my neighborhood haven't developed this skill and as a result they ignore everyone. For what reason, again I have no explanation. Which is why I am telling you we are studying patterns and behaviors. It bothers me that much!

It is not like Peter and I have nothing better to do! We do of course. But like tonight's quote points out..... connecting with others is like a primal need. 

Wednesday, December 28, 2022

Wednesday, December 28, 2022

Tonight's picture was taken in December of 2003. Mattie was a year and a half old and a total live wire. I knew there would be NO way we could get him to stop moving long enough to take a Christmas photo for the front of our cards. So that day, I dressed Mattie up in a sweater and we took him to Target, Home Depot and Lowe's. We wanted to find a festive backdrop to snap a photo and I knew Mattie would sit still while in the shopping cart. Mattie loved those three stores, most likely because there was always something to look at that captured his attention. This was the photo we used in 2003 for the front of our holiday card. 

Quote of the day: You can’t calm the storm, so stop trying. What you can do is calm yourself. The storm will pass. ~ Timber Hawkeye

It was another busy day. My dad went to the memory care center, and after I walked with Peter and Sunny, I took my mom out to lunch and to shop at the mall. The mall was a zoo, but manageable. The café at the store was super busy, but I found a lovely person who served us and did me a favor, so I did not have to stand on a long line to order food. All I can say is when I meet a person who does an act of kindness, it lightens my mood. It restores my feelings about life and humanity. 

Once I got home with my mom, a stack of mail was awaiting her. I have learned to drop everything and help her process her mail. I used to get very upset with her because she can be demanding when she has bills to pay or other correspondence. But like tonight's quote mentioned, I remain calm and as a result it prevents a storm of emotion and anger. Nonetheless, I was at it for 90 minutes helping her. 

While I was driving my mom to the mall today, she started on me about wanting to drive. I outright said, NO! There are some things that I am adamant about, first and foremost it is her safety and that of others. When she mentioned that she was capable of driving, and then provided her with a long list of cognitive issues that I have observed which would make her an unsafe driver. She heard me. I acknowledged her frustration, but on the other hand, I have altered my life so that she has the freedom to go out daily. 

Meanwhile back at our house, there was a beautiful pileated woodpecker hanging out in our backyard. I am quite certain the woody woodpecker cartoon was based on this cutie. 

The moon and a plane flying through our backyard!

Look at these two! We have taken Sunny on a daily walk for several days now. I know he loves this outdoor time with us, however, today, he wasn't himself. This new chemo seems to be doing a number on him intestinally and energy wise. 

Miss Indie on the other hand demands outdoor time. Given that we have fox and other threats to her safety, she is only allowed outside under supervision. She isn't happy about this and can get quite vocal about her disgust with us. 

Sun setting in our backyard!

Tuesday, December 27, 2022

Tuesday, December 27, 2022 -- Mattie died 691 weeks ago today. 

Tonight's picture was taken in December of 2002. It was the first snowfall of the season, and it was the first time Mattie ever saw snow. Mattie was 8 months old, I dressed him up in his Santa suit, and we brought him out in his entertainment saucer on our deck. We snapped countless photos that morning and this was the one we landed up selecting. It was featured on the front of our family Christmas card. 

Quote of the day: I really don't think that's true at all. If you truly love someone, if they were ever important to you, it doesn't disappear. What it looks like might change, but that's only the surface. ~ Ciara Smyth

It was another typical day here. Except for the fact that it was the day to change my parent's bed linens. Since my dad uses 16 pillows, yes 16, it is a big labor for me. Which is why I only do it every two weeks. I have to plan for this day in advance because I can't have other obligations in the morning, as I land up doing three loads of laundry. 

Meanwhile, as I was running around doing chores, guess who was catching the morning rays through the window? Miss Indie! She is so easy going and a love. 

At noon, I stopped whatever I was doing, and Peter and I took Sunny out for a walk. I absolutely love this 90 minute break, to get fresh air, to walk at a normal pace, and to take in nature and the world around me. Of course Sunny loves it! Sunny is having a hard time with this new chemo, as he is vomiting and has diarrhea. 

Peter and I took the Christmas turkey carcass and turned it into soup! It is tonight's dinner. I am a big soup fan and ironically this is the first year I have gotten into making home made turkey soup. Most likely because I am very home bound with my parents and I also love food. So it was a natural connection to do something tasty and creative with what I have around me. 

We have neighbors up the street from us who are in their early 80s. They live independently and yesterday I went over and dropped them off a large Tupperware of leftover turkey, mashed potatoes, gingered carrots, and homemade stuffing. Not to mention Christmas cookies and red velvet cake. I am happy I could share these goodies with them and all I can think of is if I were there age, I would greatly appreciate it someone thought of me!

Monday, December 26, 2022

Monday, December 26, 2022

Tonight's picture was taken in December of 2008. Mattie entered the hospital that day through the outpatient clinic. He wasn't feeling well and was also running a high fever. He could hardly keep his head up. Which was why a pillow was sitting in his lap. Prior to this photo, Mattie's head was buried in the pillow. Mattie was visited by Santa and Mrs. Claus, who brought Mattie all his favorite toys (of course they had a little help from Mattie's child life specialist). Literally right after this photo, Mattie's head went back on the pillow. I am not sure how Mattie found the energy to manage this visit with a smile. I know if I were Mattie, Santa would have been directed to the door. 

Quote of the day: When I was a boy, and I would see scary things in the news, my mother would say, 'Look for the helpers. You will always find people who are helping. ~ Mister Rogers

I was prepared for this morning to be difficult. I knew it would be because my dad had not had a bowel movement since Thursday. This is what my life has come down to. I am sure this sounds ridiculous, but it is bordering on a national crisis in my household when my dad doesn't go. He can work himself up into a silly, and therefore, starts moaning, can be arched over in pain, and runs to the bathroom every 15 minutes. Before my dad went to bed last night, I gave him Ducolax and Senocot. I expected that to help. However, after I showered him, I could tell my dad was uncomfortable and shortly after the running to bathroom routine started. He has no rational understanding as to when he has to go to the bathroom, which makes the whole process mind numbing as his caregiver. 

Before I even brought him downstairs, I inserted a Ducolax suppository, because I knew if I did not get on top of this issue, the next step would be the emergency room. This happened in Los Angeles in June of 2020, which is why I am very experienced on this issue with my dad. He has irritable bowel syndrome and now he ranges from having the diarrhea to constipation form of the disease. It is a special kind of torture on top of dealing with moderate stage dementia. 

My dad managed through breakfast, but was miserable, and kept running to the bathroom. I finally reasoned with him and got him to walk around the first floor of the house. Movement is the best remedy. But I assure you, you can't concentrate, you can't focus or listen to anything else when he is in one of these states. It is like you can feel your blood pressure rise when in the midst of this bathroom crisis. 

I had promised Peter that at 11am today, we were going to walk together with Sunny. Given how my morning was going, I did not know if this would be possible. But I was determined to stick to my plans. Thankfully within two hours of administering the suppository, I could tell it was beginning to work and therefore I told my mom that she had to watch my dad for 90 minutes while we went for a walk. I set her up with a chair between the hallway and bathroom, so she could oversee what my dad was doing while also watching TV. 

I then escaped and had a lovely walk with Peter and Sunny. I find walking imperative to managing this stress and lack of freedom. Later today, we did take my parents out to eat. It is the only diversion they both can do and honestly my dad prefers eating out. At first I took offense to this, but I have moved passed this feeling. I have no idea why he loves eating out. I don't know if it is the control he has to choosing what he eats, or the social experience. But of course with all the laxatives on board, I had a major mess on my hands when he went to the restaurant's bathroom. I can't win and I am constantly juggling diarrhea or constipation. What I do know is the average person couldn't handle his personal hygiene needs and simply wouldn't do it. 

Sunday, December 25, 2022

Sunday, December 25, 2022

Tonight's picture was taken in December of 2008. It was actually days before Christmas. Friends dropped off all sorts of fun things for Mattie, including Christmas stockings, a little Santa and this red frosted donut. As you can see, Mattie put the Christmas stockings on his feet. He had a good sense of humor despite all that he was dealing with. He truly was a remarkable soul. One thing was for certain, Mattie was happier in the hospital than at home while battling cancer. Which was why it was not surprising to me that Mattie chose to died in the hospital. 

Quote of the day: It is hardly possible to build anything if frustration, bitterness and a mood of helplessness prevail. ~ Lech Walesa

Today was NOT a good day. I did not wake up in a bad mood, but early on the emotions of the day hit me. I feel for Peter, because he really tried, suggested that he and I open presents from his parents, and so forth. But I was not in the mood and it is 7:45pm, and I have still not opened a gift. 

Peter truly carried the day and worked hard in the kitchen. By 10am, we learned that our God daughter and her parents wouldn't be able to join us today, because they were all sick. It was very nice of them to be concerned about us, which I appreciate, but somehow I planned for food for nine people, and this simple change upset my apple cart. It sent me for a tail spin. I have no idea why! Maybe because I deemed them a diversion from the reality of being without Mattie and managing a full time caregiving load. 

I haven't been in such a funk for years actually. The feeling comes on and I honestly do not know what to do. If it were warmer out, I would have left the house and walked. I felt like I was going to explode and at the same time felt nauseous. Our friends who also lost an only child to cancer, did come over today. Naturally our conversation was much more real and honest, because we had no one's feelings to protect. Of course my dad was thoroughly clueless and couldn't process why today was a hard day for us! Where to go with that? 

My dad was an absolutely BUNDLE today. His dementia makes him act like he is about five. The world revolves around him and he can't think beyond himself and his needs. He had an explosive bout of diarrhea on Thursday and since then, has not had a bowel movement. So today he was miserable and very fixated on having to go to the bathroom. When I tell you he had me up every 20 minutes while our guests were here, I am not kidding you. I washed my hands more times today that is humanly healthy! The problem is my dad has no understanding of how often he is going to the bathroom. 

Meanwhile, I have one bathroom on the first floor. Normally it is set up for my dad. But today, I moved his commode out, so that guests could use it. You should have seen me, with each time he had to go to the bathroom, I tossed out the pretty sunflower rug in the bathroom that I have for guests and moved in his commode. It was like a bad episode of I Love Lucy, except I did not have Ethel helping me! Actually there was nothing funny about this, as my food did not go down right, and forget about having any sort of meaningful conversation. How can I when I am jumping up and down constantly? 

The Christmas pooch. Even Sunny wasn't happy. I think he feeds off of me and one thing he deeply misses is our walks together. 

Our Christmas buffet. 

Our friends Ilona and Attila with us. Even Sunny wanted to be in the photo. Mind you he got two big helpings of turkey today. 

The red velvet cake. 

This was our first attempt at a red velvet cake. We liked the frosting but felt the cake part was too dense. So something I need to work on. 

Saturday, December 24, 2022

Saturday, December 24, 2022

Tonight's picture was taken in December of 2008. Mattie was home from the hospital and at that point, we had a hospital bed in our living room. Life was beyond chaotic, Mattie was in a great deal of pain, and suffering from depression, anxiety, and medical traumatic stress. Ironically, one would think we'd want to be home for the holidays, but what Peter and I quickly learned was that being home was NO PICNIC. It was very challenging, stressful, and we missed our medical family. We never felt isolated when they were around. Mattie felt miserable and it was heartbreaking not knowing how to make things better. That day, Mattie's friends dropped off these cute Rudolph the Reindeer noses and hats. These things provided moments of happiness and laughter. Gifts like these were much more than tangible things. They helped to achieve the impossible...... a distraction from cancer and the ravages it produced. 

Quote of the day: A tree is known by its fruit; a man by his deeds. A good deed is never lost; he who sows courtesy reaps friendship, and he who plants kindness gathers love. ~ Saint Basil

Peter and I have invited some friends over for Christmas tomorrow. These friends were with us last year and are well aware of our situation. One couple is my friend in cancer, as she has lost her only child to cancer as well. The other couple are friends of Peter's from work. They have a 6 year old, who is our God daughter. We used to see them more frequently, but I am happy I can at least make Christmas work. 

To cook a meal for 9 people, I started prepping on Thursday. Each day I made something. Thursday was a mashed potato with two types of cheese and chives and I also made cranberry sauce, Friday, was stuffing, which is made with sour dough bread crumbs, cherries, apples, onions, celery, and parsley. Today, I cleaned and marinaded the turkey and then Peter and I worked on making a red velvet cake. 

The red velvet batter. Ironically I find cakes the easiest part of the meal to make. Last year I made a coconut layer cake. I wanted to do something different this year. 

My dad's friends called last night and today. I wish I could say he was engaged and perked up, but unfortunately not much reaches him from a socialization stand point anymore. It is quite sad, and I can't let it get to me, because then I wouldn't function. 

We took my parents to the Clyde's in Rockville. Our favorite server, Dawn, is there and it is worth the car ride. 

Dawn brought us this beautiful Christmas floral arrangement on a sleigh. I absolutely love it! 

Our table is set and ready for tomorrow (the napkins were my maternal grandmother's!). My lifetime friend, Karen, mentioned that she doesn't know how I do all of this! I truly appreciated her acknowledgment of this because truly nothing is easy. The day to day grind, lack of freedom, and non-stop chores can take away any joy, happiness, and definitely impacts my whole outlook on life. Now tomorrow's test is balancing cooking, serving, company, and my parents. 

Friday, December 23, 2022

Friday, December 23, 2022

Tonight's picture was taken in December of 2006. Mattie was four and half years old and Peter got both of them matching Santa hats. I thought this was priceless and I am so happy I snapped this photo of the boys in front of our tree. Together we collected many sentimental ornaments over the years and now that we are decorating again, it brings back memories to see these special baubles. Ironically I still have this SAME star on our tree and the funny part about this is I bought this star in Neiman Marcus. This is a store I NEVER shop at, I only like their café. But back then I wanted to find a replacement star and when I saw this, I immediately bought it. If I were to buy it today in Neiman Marcus, I am quite certain it would be hundreds of dollars, and I wouldn't be purchasing it. 

Quote of the day: To make a difference in someone’s life you don’t have to be brilliant, rich, beautiful, or perfect. You just have to care. ~ Mandy Hale

Miss Indie received a Christmas gift from our friends today! Indie immediately started playing with it! I am so happy that Indie and Sunny received gifts, because I am truly saddened I couldn't get them stockings filled with gifts this year. 

Meanwhile, my dad went to his memory care center today and my hope was I could get some things accomplished. An hour after he got there, I received a call telling me the center was closing early because of the weather. So Peter went right back to pick him up. 

Peter also took Sunny to the vet today for his follow up bloodwork! The good news is Sunny is holding steady with weight and his blood work results look good. So we continue on this chemo in hopes that when he gets scanned in a few weeks, we find that the meds are holding back the cancer. 

Later today, I drove to Maryland, and took my parents out for an early dinner. This cute elf is Dawn. Dawn is one of our favorite servers. We have followed her from Reston, VA to Rockville, MD. It is a hike to drive to Rockville, and some days it can take me over an hour each way. But its the special service and connection we have with her that makes the trip worth it. She is excellent mental stimulation for my dad. 

Tonight Dawn was participating in the restaurant's ugly sweater contest. She actually won the contest, but frankly I loved this sweater. It wasn't ugly to me. I particularly loved how Dawn jingled when she walked. 

Dawn and my dad!

It was 12 degrees tonight. My mom typically orders ice cream for dessert, but today she ordered hot chocolate and Christmas cookies. The hot chocolate was made with real melted chocolate and homemade marshmallows. 

I had a Santa cupcake. The pastry chef at Clyde's at Tower Oaks is phenomenal. I haven't had one bad item she has created. Doesn't seeing this inspire you to get out a piping icing bag?! 

Thursday, December 22, 2022

Thursday, December 22, 2022

Tonight's picture was taken in December of 2006. Mattie was four a half years old. I do not have many photos of the three of us together, which is why this is so special to me. Check out Mattie's expression, he was such a live wire and it was hard to get him to stop moving long enough to snap a photo!

Quote of the day: We could never learn to be brave and patient, if there were only joy in the world. ~ Helen Keller

This morning, my dad had a follow up appointment with his doctor. The doctor literally sees him every two months. I had a typical morning routine, until I woke my dad up. I did get him up and into the shower. Before taking him to the shower, I always ask him if he has to go to the bathroom. He said no, so I helped him into the shower and onto his shower chair. My dad can actually wash himself, if I set everything up for him. That is the extent of his help in the morning, because once he comes out of the shower, I do all the rest!

However, while he was in the shower, I made my parent's bed. Within minutes, I smelled poop! I ran back to the shower and found the shower covered in poop and my dad moving it about the shower. I was besides myself and immediately got soaked while cleaning it up and moving it away from him. I wish I could say that is where the fun ended. It did not!

I got him out of the shower and then scrubbed it, as I did not want anything to sit for long on the tiles. After I toweled my dad off and went through the powder and lotion routine, I then dressed him. We do all of the morning routine while he sits in a chair. As soon as I finished shaving him and got him up to head downstairs, he pooped again in his pants. Which meant that I had to change him and start again. 

When I finally got downstairs, we then had about 20 minutes to eat some sort of breakfast and get out the door. Meanwhile, when I got downstairs my mom was doing her walking routine around the house. NOT eating breakfast. I told her to stop and got her to the table and reminded her we had twenty minutes until leaving. This is problematic because she eats very slowly and doesn't like to be rushed. So instead of moving along and trying to meet the time schedule, she lashed out at me. She had all morning to eat breakfast and be ready, but she just can't. Which leads me to be angry.  

Tonight having calmed down, I realize that my mom, like my dad, has NO sense of time. She thinks she fully functions, but she doesn't. Therefore, moving forward, I need to give her timed reminders throughout the morning, because even though I told her about the doctor appointment and even wrote it on my dad's white board calendar, it doesn't register with her. 

So if you are following along, I dealt with two rounds of poop this morning. I thought my dad would be finished for the day. Forget it! Right in the middle of the doctor appointment, my dad lets loose and I had to take him immediately to the bathroom. It was a royal mess and though not fun, the doctor got to see first hand what I juggle with my dad. It makes for a very difficult and unpleasant quality of life. 

Wednesday, December 21, 2022

Wednesday, December 21, 2022

Tonight's picture was taken in December of 2005. Mattie was three and half years old and that Christmas we were visiting Peter's parents in Boston. It had snowed and Peter took Mattie outside of the house and tried sledding with him. Peter's parents have a big hill in front of their house, and literally they did not have to go far for this snow adventure. Mattie was game to try it, but only if Peter would do it with him. 

Quote of the day: It seems to me that one of the great luxuries of life at this point is to do one thing at a time. One thing to which you give yourself wholeheartedly, uni-tasking. ~ Michael Pollan

Yesterday, or so I thought, I prepared my parents for the fact that Peter was going to have a colonoscopy today. I took my parents out to eat yesterday, because I did not want Peter to have to smell food cooking in the house. The colonoscopy prep, from my perspective is a killer. Peter manages very well, but it isn't easy being on a clear diet all day. I focus on my parents 24/7, 7 days a week. All I was asking was a day in which they would lighten up on the demands so that I could support Peter. 

My dad went to the memory care center today, so that was one parent accounted for. I encouraged my mom to stay home while I took Peter for his procedure, but she refused. She has this fear of missing out syndrome, which is actually very annoying. So she insisted on coming today. Like always, I got up early, got showered and dressed and made breakfast. Then I went back upstairs to shower and dress my dad. When we finally sat down for breakfast, my mom pulled out her phone and made a call to one of her health insurers. I get it, she had questions for them! But did she have to call today? I was already stressed out with today's juggling act, and wanted to be able to get out the door and not have Peter feel any stress or pressure before his test. JUST NOT POSSIBLE IN THIS HOUSE.

The insurance call commandeered my breakfast. I literally had to stop eating to join her call because she wasn't processing what was being said to her. This is the part of dealing with my mom that stresses me out. She has no insight into her cognitive state and can quickly migrate from calm to nasty/hysterical within minutes. 

In the midst of all of this, my dad dropped his glass of juice all over himself, the table, and the floor. I had to pull off his clothes and put them in the dryer, as well as clean up around us. Don't forget I was still on a phone call!

When it was finally time to take Peter, we got in the car and to the outpatient center. We had to get there an hour before the procedure. I was going to sit and wait with Peter, but I knew my mom wanted to go to the bank and post office. I had to assess what to do! Do I wait and then force Peter post-colonoscopy to go to the bank and post office, or do I leave Peter on his own, while I take my mom to do these chores and get back in time while he is in recovery from the anesthesia? It seemed like a difficult decision, but I opted to do chores while Peter was at the outpatient center because I did not want to inconvenience him after his procedure. 

I felt very conflicted and honestly if I were Peter, I would have felt that I did not make him a priority. Fortunately, Peter sees the bigger picture here. But I wasn't happy. In the midst of taking my mom to do chores, she gave me a lot of attitude. After we went to the bank, I drove my mom home to put her money away. While waiting for her to come back downstairs, I folded laundry and put it away. Then herded her back to the car to wait for Peter at the outpatient clinic. When we arrived at the clinic, my mom refused my help in the parking lot as she went up and down stairs. By that point I had it. I literally walked away from her and checked back in at the medical office and asked for an update on Peter. 

Of course my mom did not remember her way from the parking lot to the doctor's office (despite navigating this area 90mins prior), so I had to leave the outpatient center and find her. My mom is truly unaware of her memory problems. Case in point, we were at the foot doctor a week ago. My mom went to the bathroom in the office and couldn't find her way back to the waiting area where I was with my dad. It took me and the office staff to track her down within the office complex. 

I am happy to report that Peter got a good report from his colonoscopy and doesn't have to go back for five years. I am a big proponent of being proactive with one's health and though we are juggling a lot, I am glad that we make these medical tests a priority. 

Tuesday, December 20, 2022

Tuesday, December 20, 2022 -- Mattie died 690 weeks ago today. 

Tonight's picture was taken in December of 2004. Mattie was two and half years old and by this time, he understood what Christmas was all about. I wanted to snap a photo of Mattie in front of our Christmas tree for our annual family holiday card. Certainly this could have been the photo I used, but it wasn't. Thank goodness for digital photography, because I must have snapped 20 photos until I finally landed on one that I thought captured the beauty of Mattie. 

Quote of the day: Anybody can become angry – that is easy, but to be angry with the right person and to the right degree and at the right time and for the right purpose, and in the right way – that is not within everybody’s power and is not easy. ~ Aristotle

Aristotle was correct, it is very hard to express anger appropriately. The right degree, time, purpose, and way, is so well stated. Tonight I am just angry. My life is hard enough, with tasks from the moment I get up until I go to sleep, but then factor in extraneous feedback I get from others around me, and I want to blow. People who are watch what I am doing and have commentary. Certainly there is a lot to comment on, but this evening, I ran into my neighbor, who claims to want to be supportive and be a sounding board. But it isn't helpful to hear that I need a therapist and my parents need to move into an institution. This negates my feelings and frankly I think I am quite sane and managing better than most people could, so I do not need a therapist. 

All of this reminds me of when Mattie died. I can't tell you how many people said I needed therapy. NOPE, I did not need therapy then either. I just needed to surround myself with people who understood trauma and grief. Being a caregiver of older adults is another topic that not every one grasps. But every family dynamic is different and what might have worked for you, may not work for me. Regardless of what I may need, being prescriptive with me is a major turn off. 

It is hard to believe it is the week of Christmas, when in all reality, each and every day feels the same for me! As I told my neighbor tonight, if I had a free hour (which never happens) I certainly wouldn't be using it for therapy. Instead, I would prefer to take that hour and reconnect with friends. Or better yet, I haven't gotten my hair cut in a year! So literally I have basic human needs that I would want to meet first before thinking about therapy. Either case, I am incensed and I kept my anger to myself, as this neighbor doesn't know me well, and I think her heart is in the right place. But truly if she wants to help, then why not have my mom over, take a walk with her, or find a way to give me an hour of freedom. My neighbor is in her 70s, not my age, and one would hope she would share commonalities with my mom. Of course this is just a pipe dream, because early on I had mentioned these ideas to my neighbor, and clearly she doesn't feel comfortable meeting with my mom. 

Monday, December 19, 2022

Monday, December 19, 2022

Tonight's picture was taken in December of 2004. Mattie was two and half years old and this was a typical scene in our home. Mattie surrounded by toys and things with wheels. He was fascinated by locomotion. If you look behind Mattie, you will see a sippy cup of milk on the floor. Mattie was a big milk drinker. He drank so much milk that our joke was that we should invest in our own cow and that he was going to have the strongest bones around. It is rather ironic though that Mattie was diagnosed with bone cancer. 

Quote of the day: Sometimes our work as caregivers is not for the faint of heart. But, you will never know what you’re made of until you step into the fire. Step bravely. ~ Deborah A. Beasley

It was another day in paradise here. My dad went to his memory care center and at 1pm, my mom had cognitive testing at the neurologist office. This is the second neurologist we have seen. Frankly I really did not know why she had to do this testing, as she endured a three hour battery of testing at my neurology office in September. That battery of tests revealed that my mom has memory loss and needs support. Facts that she doesn't want to accept AT ALL. 

Given that I am trying to establish a connection with a neurologist, and one my mom tolerates, I had my mom comply with this additional request for testing today. I did not realize the assessor was going to welcome me into the testing room, but she did. So unfortunately I got to watch how the test was administered. Back in September, I did meet the psychologist who worked with my mom. She was excellent and invited me in initially to provide my perspective on my mom's issues and then I waited in the waiting room, while my mom worked with the therapist. 

Today's therapist took my mom's temperature and blood pressure and then jumped right into it. She did not explain anything about testing or how long it would take. The first no no! Then she proceeded to ask my mom questions such as: 1) repeat five words (face, velvet, church, daisy, and red) and then asked her to recall these words after a minute and then after 5 minutes, 2) draw a picture of a box in 3-D, 3) count down by 7s, starting at 100, so 100, 93, 86 etc, 4) raise her hand each time she heard the therapist say the letter a, 5) list all words that start with the letter f, and generate as many as she could in 1 min, and 6) other questions like what city was she in, what is today's date, etc.

After this testing was over, she handed my mom a clip board, with paper and pencil questions. She told my mom to answer all the questions and then leave the clip board on the counter, and then we could leave. I let me mom complete the questions but I could clearly see her perspective is OFF. Then my mom got to the last two sheets on the clipboard, and she had the where with all to know that she couldn't answer these questions. They were meant for her caregiver! Mind you the therapist never told us this! So I grabbed the clip board and went out to talk to the staff. 

They couldn't track down the therapist. So instead I gave them a diatribe! I feel that the whole way this test was administered should invalidate the test! The staff said that the assessments attached to the clip board were meant for both of us to answer together. I explained that was not a good way to assess a person with cognitive difficulties. An assessment should be given to the patient and another to the caregiver. I feel like I was doing assessment 101, and told then that I would give this therapist an F if she were a student in one of my classes. I was very frustrated and once again, I feel like the medical community has left me high and dry.

Needless to say, after I left the office, a few minutes later, the neurologist called me on my cell phone. He wanted to know how it went. I put him on speaker phone so my mom could follow along. I gave it to him and explained that his team needs better training on conducting an assessment as well as communicating and interacting with caregivers. As I found the staff condescending and dismissive of my concerns.

My mom's DAT scan shows no indication of a movement disorder. However, the neurologist went on to explain that many times symptoms can show up before indications are seen within a brain scan. Lovely! So why take this 5 hour test at all? The neurologist then recommended a skin biopsy. A novel study reported in the Journal of Parkinson's Disease has found that the presence of neuronal deposits of the biomarker phosphorylated alpha-synuclein (p-syn) in the brain and the skin of patients with Parkinson's Disease (PD) distinguishes them from individuals with symptoms of parkinsonism due to the accumulation of another protein, tau. This development may help the early identification and differential diagnosis of PD among the various parkinsonism subtypes.

Why undergo a five hour scan, if it can be inconclusive? Why not just have the skin biopsy to begin with, since it is provides more valid data? All I know is I am not recommending my mom do the skin biopsy. It sounds painful, and the doctor mentioned scaring and trouble healing. No thank you! Then he mentioned that starting a dopamine drug for a movement disorder may be the best way for her to proceed, because sometimes it is trial and error to what works. Again, no thank you, as these drugs can have nasty side effects such as hallucinations. He also discussed taking meds for dementia. My mom did not want to hear this and she told him she has no memory issues. She did score a 26 out of 30 today, but as I told her, to me these assessments only prove she is a good test taker. They truly don't capture the nuisances of daily living, and the issues that I see daily with her, which make it impossible for her to live independently. The doctor heard me and tried to support me, but my mom is difficult. I certainly do not want to force her into anything she isn't comfortable with, so instead we will go for a follow up appointment with the doctor in March and assess where we are at that time. 

What I do know is my dad is on two memory medications and has been on them for years. I see no visual benefits from them, which is why I am not upset with the fact that my mom doesn't want to take them. If I thought there would be an added benefit, then I would be more aggravated by her decisions. So this is the state of affairs today... business as usual for Vicki, having to manage and cope with the daily behaviors of my mom. 

Sunday, December 18, 2022

Sunday, December 18, 2022

Tonight's picture was taken in December of 2002. It was Mattie's first Christmas and as you can see, we had a lot going on in our living room. Stacks of Mattie's books, his entertainment saucer, activity walker, and toys filled our home. Do you see Patches, our calico cat? She was never far from the action and she instinctually understood that she had to behave around Mattie. 

Quote of the day: Start by doing what’s necessary; then do what’s possible, and suddenly you are doing the impossible. ~ Francis of Assisi

Don't ask what I did today. It seems like a blur. I am sure many people can relate to this feeling at this time of year. You don't know what you are doing first and yet the holidays are vast approaching. They are coming whether we are ready for them or not. It is hard to believe that my intense caregiving role has been going on for a year now. 

I would say that my parents were resting more than awake today. My mom seemed exhausted all day and I suspect it was because she had no down time during the day yesterday. Any case, while they were sleeping, I was doing Foundation work, Christmas dinner planning, and all sorts of chores. 

Later today, we took my parents out to dinner. We go to the same restaurant every Sunday. I am telling you that the servers who work with us have become an extended part of our family, and a crucial part of my social circle. Without them, I truly would have little to no rational conversation all week long. 

Today we exchanged gifts with Cheryl, our server. So if you are keeping track, yesterday Dawn, one of our favorite servers, comped our entire dinner and tonight, Cheryl brought each of us a Christmas present. Literally at our table, it was like Christmas morning. This is how special these women are! 

Cheryl gave me several gifts, but three of them are now on our tree. Do you see the "peace" ornaments? One in red and white. Both from Cheryl. 

The peace ornament in white. This year, I added a clip on cardinal to the tree. Symbolic of Mattie. 

Cheryl also gave me this butterfly ornament that is hand made out of tin. She knows that butterflies are important to me. Do you see the little elf with a Santa hat near the butterfly? Mattie made this elf while he was in the hospital and I just found it this year. 

Saturday, December 17, 2022

Saturday, December 17, 2022

Tonight's picture was taken in December of 2002. It was Mattie's first Christmas and I wanted a photo of Mattie by the tree. My best solution was to bring over Mattie's high chair. As you can see Mattie looked stunned and had no idea what was going on! The ironic part about all of this was Mattie did not like his high chair. When we introduced Mattie to this high chair to eat solid foods, he refused. For many months, I had to feed Mattie in his car seat instead. He always loved that seat, for what reason I have no idea. 

Quote of the day: Remember, there’s no such thing as a small act of kindness. Every act creates a ripple with no logical end. ~ Scott Adams

Today was a day filled with all sorts of emotions. My frustration over being tied down to the same routine each day is hard, but at times it is my mom's attitude that truly makes this routine much worse. 

This morning, despite the cold, we went to the farmer's market. We have gotten to know Stephan, a local artist who plays at the market each Saturday. He sounds just like James Taylor to me and I relate to his music. Today, Peter and I sung several Christmas carols with Stephan!

After we got home and unpacked things, we took Sunny for a walk. I feel awful for my lack of time and attention to Sunny. We have a close bond, and I know he misses our daily walks and routine together. 

Later today, we went to Mattie's memorial tree to decorate it and the surrounding trees with ribbons and ornaments. This one particular ornament is from my friend, Margy's family. It say, M&M, for our M&M Wishes program. Before Margy died, she would visit Mattie's tree on holidays and on the day he died. 

What I love about this photo is it captures Margy, her husband, Peter, and me together. 

This is Mattie's fourth memorial tree. But we call it his official tree. It is a white swamp oak. Mattie LOVED acorns and it was only fitting that such a tree memorializes his amazing life. 

I have to admit while we were at the tree, my parents stayed in the car and were totally disinterested in the tree and what we were doing. To say that this isn't hurtful would be lying. Rationally I know that dementia impacts both of them and this disease leaves them tuned into only themselves. 

It was a cold and blustery day so when I left my parents in the car, I had the windows shut. At one point, my mom opened the car door and told me they needed air in the car, and was irritated with us for taking so long. That I did not start screaming then and there is a testament to my fortitude. 

It is hard to see but there are all sorts of ornaments on the tree and this year, I added a "love you to the moon and back" to the tree. This is a saying Mattie and I said to one another often. It was our saying!

This is the third memorial tree. It is a Yellow Wood tree. It was split practically in half during a storm. Though it is a hardy tree, I did not like that Mattie was being remembered symbolically by a cracked tree. Which is when the White Swamp Oak was planted in 2018. 

This is memorial tree number 2. I refer to it as the Charlie Brown Christmas tree of Mattie's grove. I always put a ribbon around Charlie. 

I take my parents out to eat several times a week. Definitely on Saturday and Sundays. It is like the main event of the day. So for a year, we have been going to the same three restaurants. They are all part of the same restaurant group. 

On Saturdays, we usually go to Tower Oaks which is located in Rockville, MD. It is a royal schlep to get there, but we love our server, Dawn. We met Dawn at the Reston, VA  Clyde's, but unfortunately this restaurant closed its doors in May of 2022. Because we love Dawn, we make the hellish drive to Maryland to see her once or twice a week. I told Dawn yesterday that we wouldn't be seeing her today, because we would be in Alexandria, VA visiting Mattie's memorial trees. I did not say anything else. I never told her that I was going to dine at the Clyde's of Alexandria. But she is smart and put two and two together. 

After visiting the trees, we drove to the Clyde's of Alexandria. We have been dining at this restaurant for decades, as it was only blocks away from Mattie's preschool. He absolutely loved this restaurant and therefore the whole space holds special memories for us. 

We have gotten to know the management at this Clyde's and when Tim seated us tonight, he told me that our bill would be comped in full. I literally asked him why and who would do this? Want to know who? Try Dawn! She called the restaurant and gave them her credit card number. 

Dawn then sent me this photo by text message while we were eating! Dawn understands loss. Why? Her son was murdered in 2016, at age 29. I actually just learned about this today. For a year of knowing her, I never knew about her son, but she treated us to dinner, not because we are one of her best customers but because it was one bereaved mom to the other. 

When Dawn heard me say we were visiting Mattie's memorial tree, she took it upon herself to do an act of generosity and kindness. Something to brighten my day! If you want to know why I drive an hour both ways to see Dawn, it is because people of her caliber do NOT grow on trees. I consider her an important part of my social circle and she takes excellent care of my parents and all of us while dining. Forget the Christmas presents and other material gifts, I will take the blessing of knowing someone like Dawn any day of the week!