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.