Saturday, December 3, 2022

Saturday, December 3, 2022

Tonight's picture was taken in December of 2003. Mattie was a year and a half old and that Christmas we took Mattie to Los Angeles, to celebrate the holidays with my parents. At that time, my parents had citrus trees behind their house. It was a great spot to have an educational and fun lesson! Mattie loved picking lemons, oranges, and grapefruits, and then from there he would sort them, check out their colors, and even their weights. Who knew the hours of enjoyment fruit could provide?!!!

Quote of the day: Happiness is an attitude. We either make ourselves miserable or happy and strong. The amount of work is the same. ~ Francesca Reigler

It was a rainy morning and I truly did not want to get out of bed. But I did, because I know my mom pops up at 5:30am, and therefore, if I don't get it together it throws their day off. After I got my dad up, washed, dressed and downstairs for breakfast, I then did brain games with him and got him to walk for 15 minutes around the first floor of the house. My dad truly doesn't respond to my requests to move and do his exercises, which is why I am thrilled that we are hiring a personal trainer who is a physical therapy assistant, who can work with my dad two times a week. I am adamant about this because if we can't maintain his abilities, it will be impossible for me to care for him independently. 

Meanwhile, as soon as breakfast and the exercise routine were complete, both of my parents fell asleep for hours. One could ask.... why then get up at 5:30am, just to fall asleep again? I have stopped asking rational questions, because nothing here is rational. 

This is what the outside of the house looks like now. We are lit up for Christmas. 

I found these ornament shapes that light up and border our walkway. I think they are adorable. 

A close up!

Later today we took my parents out for an early dinner. We literally go out now at 2:30pm, because as the day wears on, my dad fades away. Santa was visiting today and I snapped a photo of my dad, Santa, and Dawn (one of our favorite servers). 

Santa gave out homemade cookies (sugar, chocolate chip, and gingerbread) and candy canes!

Meanwhile, I have created a game between my dad and Dawn (our server). We have known Dawn for a year now, as we met her at the Clyde's of Reston (before it closed down). My dad asks Dawn the same questions OVER and OVER. She is a great sport and entertains him each time with a response. The questions typically are:

• Is the food fresh?
• Does management allow tipping?
• If we do not leave a tip, will this impact service?

You get the picture, I call them quippy questions and hearing them over and over, makes all of us nuts. So now I have adopted Dollar December Days. Every time my dad asks Dawn a quippy question, I give Dawn a dollar. So far, my dad asked about 12 of the same quippy questions today and yesterday. Therefore in two days, Dawn made $24. I figure by the time December is over, Dawn will get about $100 from this alone. Peter took the dollars that Dawn earned today and built a structure. Very Mattie-like!

Friday, December 2, 2022

Friday, December 2, 2022

Tonight's picture was taken in December of 2003. Mattie was a year and a half old and was in Los Angeles, visiting with my parents. We set up a miniature tree for Mattie in the kitchen and Mattie loved playing with the ornaments and checking out the gifts around the tree. Mattie took to traveling like a duck to water. He loved new experiences. 

Quote of the day: You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the things which you think you cannot do. ~ Eleanor Roosevelt

I made turkey soup from our Thanksgiving Day turkey. This was my first attempt at this, because I never made broth from a turkey carcass. It turned out to be delicious! 

Today was a typical busy day. I took my mom to physical therapy and she is taking a break from therapy until January. So as of this week both of my parents were discharged from therapy. This will give me a bit of a break for a few weeks from running around from one clinic to the next. 

After therapy we came home and I literally went right upstairs to my bed and napped for an hour. I needed it to function for the rest of the day, because as soon as I got up, I had to pick up my dad from the memory care center and take my parents out to lunch. 

When I picked up my dad, he literally had NO MEMORY of anything he did during the four hours he was there. He carries a notebook in his pocket, but the only thing he records was his lunch menu. For the most part, my dad has NO interests, doesn't enjoy much and therefore it makes it very difficult to do anything outside of the house. Personally as a caregiver it takes a lot of inner strength to manage my dad and mom together, because each and every day is like the day before. The human spirit really does need some freedom and activity to keep it going. 

Meanwhile, Peter is working on transforming our outside for Christmas. 

I will take better photos, but I love seeing the reindeer. These were some of Mattie's favorites when he and Peter used to decorate together. 

It was a tradition when Mattie was alive, that the day after Thanksgiving, Peter and Mattie would get the Christmas lights out and decorate the commons area of our townhouse. I can't tell you how many of our neighbors would stop to thank me for adding this colorful cheer to their holiday season. 

After Mattie died in 2009, Peter and I haven't put one Christmas light up. We have had NO tree, no wreath, NOTHING! Now that we moved into the house in 2021 and have my parents with us, last year was the first year we decorated again.... after 12 years! Yes 12 years! It was truly strange last year to decorate. I did not feel guilty to decorate, but I must admit it no longer brings me joy. To me it is just one more task to do and then put away. Unfortunately my mindset about the holidays and celebrations have forever changed. 

Thursday, December 1, 2022

Thursday, December 1, 2022

Tonight's picture was taken in December of 2003. Mattie was a year and a half old and we were headed to California to celebrate Christmas with my parents. This was actually Mattie's second plane trip, so by that point, I knew Mattie actually liked to fly, that he would be UP the entire flight and that I had to have a full bag of tricks to keep him busy. Peter was sitting in front of us and snapped this photo of me playing with Mattie. I will never forget that moment in time and how different I thought my life would be from what it is now. 

Quote of the day: They that love beyond the world cannot be separated by it. Death cannot kill what never dies. ~ WILLIAM PENN

Last night after clearing the dinner dishes, I thought I would sit down for a minute. Forget it! My mom started to panic because she developed a nose bleed. It lasted for at least twenty minutes and I am not sure what was harder to manage, the bleeding or her intense anxiety. She truly thought she was dying and trying to rationalize with her was difficult. I finally told her it was a nose bleed, that it isn't a sign that her bronchial condition is back or that she has a significant health issue. It is cold and dry and my mom is sensitive to these weather changes. 

I packed her nose with tissues and put an ice pack on her nose. The bleeding eventually stopped and she began to calm down. I immediately moved my humidifier from my bedroom into hers and had her sleep with it running all night. In addition, I gave her nasal moisturizer spray. So I think she will be just fine, but these constant crises and issues frazzle me, because I have to stay very calm and be the parent on duty. 

Peter is looking into getting a humidifier for the entire house and we contacted FH Furr (who we use for all our plumbing, heating, electrical and HVAC issues) about an installation asap. Ironically the house did have a humidifier at one time, but it was dismantled by the previous owner and never re-installed. 

Today was another full day. My dad had his last physical therapy appointment. His therapist has been wonderful and I brought a Christmas gift into the clinic to thank her. The therapist will start working with my mom in January. However, I contacted an in-home fitness company that works with older adults, and we will be meeting Leah next week for an evaluation. The goal is to have Leah continue where my dad's therapist left off. Basically maintaining his energy level, posture, and abilities. I had to face the simple fact that I can't be my dad's therapist. He really doesn't respond to me in this capacity and instead will tell me he is exhausted and give me a hard time. He is not likely to do this with a stranger. Therefore, I am grateful that companies like Renew Me Fitness exist. 

All I know is since starting Ritalin, my dad's abilities have rapidly declined. Mainly because the medication stupefied him. Now that we stopped the medication, it is my hope that we can get back to where we were at (with walking and exercising) three weeks ago. What is unfortunately apparent with my dad is that decline happens easily and getting him stabilized can then take months. It is extremely frustrating. I am worn out, bordering on exhausted and there is no end in sight. 

Wednesday, November 30, 2022

Wednesday, November 30, 2022

Tonight's picture was taken in November of 2003. Mattie was a year and half old and that Thanksgiving we took Mattie to Boston to visit Peter's parents. One of the gifts Mattie received was Elmo. However, Elmo was battery powered and would sing and dance. Mattie just LOVED it and would dance along side Elmo. From the moment Mattie heard Elmo on Sesame Street, he loved him. Mattie could be in another room in our townhouse, but if Elmo came on, he flew into the room to catch Elmo on TV. I am not sure if it was Elmo's voice, color, and attitude that caught Mattie's attention, all I know was his reaction was unforgettable. 

Quote of the day: Doctors diagnose, nurses heal, and caregivers make sense of it all. ~ Brett H. Lewis

After my dad went to his memory care center this morning, I tried to concentrate and accrue more continuing education credit hours. Unfortunately I wasn't too successful. Mainly because my dad maybe occupied, but my mom isn't. I know she wanted to go shopping and out for tea today, so I felt pressure and rushed. Which is why my most productive times are after my parents retire for the evening. 

I came home from shopping and tea absolutely strung out. Despite it being windy and cool, I told Peter we had to go walk Sunny. Sunny of course was thrilled. Some times I just need a moment to regroup and get some fresh air. Meanwhile, since my dad has gotten home at 2pm, he has been sleeping and has no idea what he did today. Frustrating, sad, and debilitating day in and day out. 

The bright spot of the day is I checked my email and found a message from a credit union. The message indicated that the credit union has chosen Mattie Miracle to donate $10K. Naturally my first instinct was.... this is a scam. So I looked into the person who sent me the email as well as the person they said would be delivering us the check. Both are legitimate parties. So I responded back and we shall see where this goes. But what a surprise, assuming this is legitimate. 

Tuesday, November 29, 2022

Tuesday, November 29, 2022 --- Mattie died 687 weeks ago today. 

Tonight's picture was taken in November of 2002. Mattie was 7 months old and though his neck muscles could support his head, he still had trouble sitting up without falling over. As you can see, I placed pillows all around Mattie to catch him and prop him up. What was so sweet about this photo was he was looking right up at me. Mattie always kept a close bead on me, and that did not change either when he became a toddler or preschooler. 

Quote of the day: To say there had been a loss was ludicrous; one lost a shoe or a set of keys. You did not suffer the death of a child and say there was a loss. There was a catastrophe. A devastation. A hell. ~ Jodi Picoult

Last Tuesday, I made a commitment to myself, to work on continuing education credits for my licensure renewal. Yes that meant that I also gave great thought to letting the license lapse and to completely forget about this professional side of my life. It was a very hard decision as I am managing so much in any given day that honestly some days I want to say.... the hell with it all! After a lot of soul searching, I concluded.... no I am not giving up a license I worked so hard to get! Peter left for Boston last Tuesday and with his departure, I had a talking to myself. I committed to devoting several hours a night (after my parent's went up to bed) to accruing hours. I have to admit the first night or two was the toughest. Mainly because by 9pm, I am spent. I have had a full day for ten people. Yet I have been pushing through this feeling and staying up. Some nights I was up past 1am. But I am proud to say that in one week's time I obtained 21.5 hours of education. I have more to do, but tonight, I decided to take a break. Mainly because I had a very LONG day.

I got up at 6:30am, and haven't stopped moving until now (10pm!). When Peter is away, before I can get myself showered and dressed, I need to go downstairs and feed Sunny and Indie, and then let Sunny out. Of course feeding Sunny also means I have to give him his chemo. After I got myself together, I made breakfast for all three of us and then cooked Sunny chicken, made him sweet potatoes (yes Sunny eats only people food!), and also finished assembling my turkey soup. I made turkey broth from the carcass of the turkey on Thanksgiving day, but today I wanted to throw in all sorts of vegetables to make a good turkey soup. 

Once the soup was underway, I went upstairs, got my dad up, showered, dressed, and downstairs for breakfast. After cleaning up breakfast, I did brain games with my dad and had him do his 15 minute walking routine. In between all of this I also did a load of laundry, folded it and put it away. 

By 12:45pm, I loaded my parents into the car and drove to the city, so that my parents could visit my dentist. This is the first time I took my parents to the dentist. I have been dealing with so many other medical concerns, the dentist was low on priority list. But given they haven't seen a dentist in over a year, I had to resolve this. When I got to my dentist's office, I pulled the car over, and jumped out, to get my parents into the building. Then I got back into the car and parked it in a garage. I raced back to get my parents, but they already proceeded up to the 8th floor, to the dentist office. Within the office, I found my mom with a clip board filled with patient forms. Not only for her but for my dad. Needless to say, I completed my dad's paperwork and helped her with hers. I know my mom did not like having to find a new dentist, because she liked her dentist in Los Angeles. However, I suspected that if she gave my hygienist and dentist a chance, she'd like them. 

My mom got along splendidly with Annie, my hygienist. Annie is a true professional and compassionate person. So my mom had a good appointment. Then it was my dad's turn. He wanted me to be in the room with him. Annie understood and it doesn't take long when interacting with my dad to understand why he needs supervision. To make a long story short, Annie gave my dad a toothbrush and asked him to demonstrate how he brushes his teeth. WOW was this an eye opener. My dad can't brush his teeth. He goes through the motions but isn't brushing. I should have suspected this, since he supposedly shaves in the morning, but whatever he does never works and I land up shaving him with an electric razor after he showers. I am not sure why I never checked how he brushes his teeth. I chalk it up to doing too much. Annie was great with my dad and unfortunately because he hasn't been taking care of his teeth, there was a lot of bleeding. So the new strategy now is I have to brush his teeth with an electric toothbrush. She wants me to do it in his recliner, without water or toothpaste. She also gave him a special mouthwash and probiotic chewable to help tamp down the bacteria in his mouth. Annie then had my put on gloves and she trained me on how to brush and floss his teeth. Make a long story short, she was so taken by what I am balancing in any given day that she literally went into her drawer and put a sparkly silver star on my sweater. She wanted me to know I am a STAR. Do you see the star on my sweater?? 

But here's the real kicker..... Did you know that bacteria that causes gum disease may increase risk of Alzheimer's? A study out of Tufts has indicated that bacteria in the mouth can generate inflammation both locally and systemically, which will affect Alzheimer’s disease, as Alzheimer’s itself is an inflammatory disease, also bacteria migrates and penetrates to the brain to colonize there and secrete pathological molecules to exacerbate the symptoms and signs of Alzheimer’s disease. I had NO idea and I told Annie on my next cleaning, I want her to do a test of my salvia to see if I have the specific bacteria linked to Alzheimer's disease. She also said that research indicates with managing this bacteria in the mouth, that my dad's dementia meds may be more effective. 

Once we were done at the dentist's office, I got my parents back into the car and took them out to dinner. One of the Clyde's restaurants we go to, reminds me of Cheers, the TV show. As so many people there know our name and treat us so kindly. I can't tell you what big difference this makes in my life to have people who can think outside of themselves and truly want to help, provide us great service, and spend the time chatting and getting to know us. 

Monday, November 28, 2022

Monday, November 28, 2022

Tonight's picture was taken in November of 2002. Mattie was 7 months old and even back then he loved book time. He was fascinated by the pictures, sitting on my lap, and having a story told to him. I am not saying he understood anything, but it was a wonderful way for us to bond and learn about each other. 

Quote of the day: Deep grief sometimes is almost like a specific location, a coordinate on a map of time. When you are standing in that forest of sorrow, you cannot imagine that you could ever find your way to a better place. But if someone can assure you that they themselves have stood in that same place, and now have moved on, sometimes this will bring hope. ~ Elizabeth Gilbert

I have to say that I have taken tired to a new level. It is hard enough managing my caregiver routine, but in addition for a week, I have stayed up late in order to have quiet time to concentrate and work on continuing education credits for my licensure renewal. One could say.... can't you work on that by day? The answer is a big NO! My parents are constantly interrupting me and it makes it very difficult for me to get anything meaningful done. That said, I am proud of myself, because in one week's time I have completed 18 hours of education. I want to get 12 more hours done. The only way I can manage this huge task is to break it down and not look at the big picture. I set goals that I want to achieve and I push myself to make it happen. Fortunately I am a disciplined person, who also can function without a lot of sleep. But tonight I am having a hard time keeping my head up. 

I felt like I was on a treadmill today. I got my dad showered, dressed, and downstairs for breakfast. I then dropped him off at his memory care center. I then drove back home and picked up my mom to take her to her physical therapy appointment. After therapy, I came home and folded and put away the laundry and unloaded the dishwasher. Then we got back into the car and picked up my dad, in order to head to Rockville, MD for a late lunch. My dad loves going out to eat! In fact, the first question he asks me in the morning is... are we going out to eat?! He truly doesn't understand that going out to eat isn't always an option because if I do this on a daily basis, we won't be eating with Peter for dinner. As Peter can't just up and leave by day to go out to a restaurant. 

Meanwhile I am keeping a close eye on my dad. I do think he seems to be coming out of his Ritalin stupor, but his chronic exhaustion is truly hard to manage. When I picked him up from his memory care center, we asked him what he did today. I have given him a small notebook and pen for his shirt pocket as he wants to take notes. But frankly I don't think he really even knows what to write down. Normally I make light of the fact that he has NO idea what he did in the four hours he was at the center, but today I am VERY tired, so my patience and understanding were low. Instead of working to try to remember, he instead tells me that I am pestering him. He refuses to think, to use the strategies we learned in speech therapy, and instead would rather be a potted plant. Again, not my finest hour today, but I let him have it. I told him I am up until 2am working, and all I ask for him to do is record one activity and he can't even do that!

I think we have all read about people with dementia/Alzheimer's but having to live with someone with moderate stage dementia is truly problematic. It takes great inner strength, patience, and courage to face my daily routine without cracking up. Today, I am just worn out and hoping tomorrow will be a better day. However, I am not holding my breath as I have taking both of my parents to my dentist in the city tomorrow for their first cleaning and check up on the East coast. Any time the city is involved, parking is always awful and I can't just lay by and let me parents off, as they both need assistance, so I am hoping the parking fairy is on my side.

Sunday, November 27, 2022

Sunday, November 27, 2022

Tonight's picture was taken in November of 2003. Mattie was a year and half old and there were several toys he loved riding around the house. This was one of them. Actually anything with wheels fascinated Mattie. I will never forget the scratches around the floor, furniture, and walls from all of these gadgets. But honestly it did not bother me because my priority was Mattie's growth and development. 

Quote of the day: Lucky is the spouse who dies first, who never has to know what survivors endure. ~ Sue Grafton

I stayed up late last night. Or I should say, for a week now, after my parents go to bed, I work on continuing education credits for my licensure renewal. Last night I was up to after 1am. Mind you I have to wake up no later than 6:30am to get everything in the house organized for the day ahead. So I have been working very hard, but I am determined to keep up my license. I am proud to say that in one week, I completed a 12.5 hour training course on grief. I will move onto ethics tonight, but I am plugging away, as my license renewal is December 31. 

My mom wanted to go to high tea at the Ritz for her birthday yesterday. Given that I couldn't get a reservation for Saturday, I made it for today. Thank God that actually happened, because today was a grand disaster. 

I valet parked at the Ritz (which is free if you dine there or use their spa) and I took my parents inside. They had a wonderful gingerbread display of the actual hotel. A hotel employee was kind enough to snap our photo. 

In front of one of the trees. 

The hotel is decorated in white, silver and gold for the holidays. I snapped this photo of my mom, which was right in front of the restaurant. 

The restaurant has be remodeled from when I was last there. It is more open concept now, it lost its old world charm, and because it is a large open space it is VERY loud. They had a piano player today who I wanted to throttle as well. Horrible musician, with no feel or appreciation for music. Music can set the tone and vibe of a place, so I am not sure what the Ritz was thinking with this hire. 

I typically love high tea. However, the Ritz has changed how it serves tea and frankly it has lost its charm and elegant. Now each individual gets their own tiered tray of food and the savories and sweets are mixed together (which I don't care for!). All of this was bad enough, but it was my dad who made me very upset. 

He wasn't happy with the environment, he hated the food, and did not really eat anything presented to him. He kept asking me if this was it? In addition, he liked certain things, so he ate those things from his tray as well as mine. Then decided to pile up food and demanded a box. He boxed his food and mine. So I missed the opportunity to eat a good portion of what I received. In addition, my parents can't lift the tea pots, so I am juggling three tea pots, my dad unhappy and boxing food, and then he just sat there staring at us, as if he could will us to finish. NOT A GOOD experience and I came home livid. As it takes planning and coordination on my part to make this all happen. 

What was on the tiered trays..................

Assortment of Tea Sandwiches

Quiche

Avocado Shrimp Tartare

Bloody Mary Deviled Egg

Smoked Chicken Cranberry, Butternut Squash Salad

Cucumber Sandwich Roasted Red Pepper, Feta Spread

Assortment of Sweets

Currant Scone With Traditional Accompaniments

(Lemon Cream, Clotted Cream & Raspberry Marmalade)

Chocolate Dipped Strawberry

Red Currant Cacao Nib Mendiant

Caramel & Citrus Tea Infused Panna Cotta

Orange Blossom Financier, Mango Compote

Raspberry Mascarpone Tart

Opera Cake

A close up. This tiered set up is for one person. So we got three of these on our table. 

The Ritz gives the birthday guest a lotus shaped flower of strawberries and fresh cream. The cream is super thick and delicious and I am not a whipped cream fan. 

I am glad my mom enjoyed yesterday and today, but the sad reality is my dad did not remember yesterday, nor did he remember eating at home for Thanksgiving! I am serious, NOTHING. 

After I paid the bill, we went back down to the valet stand to get the car. Once the car pulled up the valets could see that I was juggling both of my parents and several bags. I not only have to help both parents in the car, but neither can figure out how to do the seatbelts. When I finally got them buckled in, the valet said to me..... "Thank God for you and what you are doing." I told him that was very nice, and that someone needs to look after me.