Saturday, June 10, 2023

Saturday, June 10, 2023

Tonight's picture was taken in June of 2003. Mattie was one year old! That weekend we took him to Great Falls, to look around, get fresh air, and to check out the amazing falls. Mattie's favorite mode of transportation was on Peter's back. We tried every stroller and carrier possible, but at the end of the day it was the backpack that was a hit!

Quote of the day: The best portion of a good man's life is his little nameless, unencumbered acts of kindness and of love. ~ Wordsworth

We moved into our home in August of 2021. Then in December of 2021, I packed up my parent's house in Los Angeles, and moved them in with us. So our home is a combination of homes put together. The photo you see here is of our family room. It is where we spend a good chunk of our days. However, you will notice that above the TV, I have nothing on that big two story wall. Why is a blank?

It is blank because NONE of us can agree on what should be placed there. Then a few months ago, I pitched the idea to everyone of having a local artist (who we have come to know and appreciate), paint some original pieces of art. Specifically creating landscape paintings of our property. I figured that would be serene, unique, and meaningful to all of us. My original idea was to capture the four seasons on our property! That idea did not go over as well as I hoped. Yet we all agreed that impressionist style landscapes of the property would be lovely. So this morning we invited Kim Richards over to discuss the concept.  We met Kim at the Vale School House art show, which is run twice a year and features local talent. To date, I have purchased four of Kim's works. So her style speaks to me. 

We toured Kim around the property and wanted her to get a feeling for all our plantings and pops of color. The design for our family room wall will take time and Kim will be coming over to do some sketching first and this will be one of many more meetings to come. But I feel good about this decision, as I love art and I believe in supporting local talent. 

Outside our family room window is this rose garden! This garden did not exist when we purchased the house. Instead there was a hodge-podge of things planted in this space. Peter ripped it all up and planted roses. 

The pops of color, to me, are very special features in our backyard. 

Around the perimeter of the house are these amazing oak leaf hydrangeas. I absolutely love them and they add a layer of privacy to our space that is noteworthy! This spring we purchased this colorful wind spinner, that I love watching from inside the house. 

When I was looking for houses back in 2021, one of the photos that caught my attention on-line, was this angle of the house. I was so captivated by the greenery that we decided to go to see the open house. The open house was the day before Mother's Day in 2021. By that point I had toured over 60 houses already. Remember I had to find the right house that could accommodate us and my parents. In any case, right after seeing that house, we put in an offer, and it was accepted on Mother's Day of 2021. Rather symbolic I think. 

The beauty of our garden is that something is blooming at various points throughout the spring. I love this crescent shaped bed of day lilies. 

This potted sapling is of an oak tree. We call this Mattie's tree. We collected many acorns from the oak tree outside our townhouse window in Washington, DC. This oak tree was special to us and it also provided many leaves for Mattie's caterpillars to consume each spring. We planted the acorns before leaving the city and have been nurturing the tree ever since!

Peter is growing sunflowers for me! As anyone who knows me understands.... I LOVE them. They will always symbolize our support community, who gave me many sunflowers during Mattie's cancer journey. The sunflower represents community, compassion, and support to me. 

Right near our porch is this charming fountain. I can't tell you how many birds, butterflies, and hummingbirds it attracts. Any case, I thought I would give you a mini tour of our gardens, and it is my hope that you can see why they inspire me to create artwork. 

Friday, June 9, 2023

Friday, June 9, 2023

Tonight's picture was taken in June of 2004. Mattie was two years old and we were outside on our deck. Of course Mattie did not care what type of weather it was outside. He just loved being one with nature, exploring, and taking in his world. However, I do think rain and snow intrigued him, and Mattie definitely taught me to move passed my comfort zone.  

Quote of the day: You have power over your mind – not outside events. Realize this, and you will find strength. ~ Marcus Aurelius

It is Friday at 8pm, and I am tired. But my day doesn't end here of course. Until my parents go to bed, I am on the go. My dad went to his memory care program this morning and I took my mom for her physical therapy appointment. After the appointment I took my mom home so she could rest for a while, and I caught up on laundry, dishes, and other chores. Physical therapy wiped my mom out and she napped for two hours. 

After I picked my dad up at the center, I then drove straight to the restaurant where we had a late lunch. Just like yesterday, my dad pooped in his pants while dining. I have concluded that his new medication is exacerbating his irritable bowel syndrome. For months now, I have told my dad's former doctor to assess him for diabetes. He did not listen, but agreed to shut me up and test him in June. Naturally this doctor retired, and when we met the doctor taking over his practice, I encouraged him to test my dad's blood. Sure enough, I was correct. His diabetes is back and on Tuesday he started this new medication. Since that point, I have had my hands full managing his toileting issues.

I text messaged his doctor this morning and alerted him of my observations. He wants me to give it a few more days and if my dad's body doesn't stabilize, we are pulling him from that medication. All I know is that my dad's gastrointestinal system is very fragile and any changes can cause massive havoc in our existence. 

I think coping with dementia is hard enough, but combining dementia with irritable bowel syndrome is enough to make any caregiver unstable. Unlike in the past when we could manage my dad's irritable bowel syndrome (IBS) with diet and other methods, now, NOTHING works. I have discussed this issue with several doctors and unfortunately there are NO good treatments for IBS. So here we are! My parents are lucky that I have a strong constitution and can manage these intense clean up jobs, but I am quite certain not every adult child would want to do this! 

Thursday, June 8, 2023

Thursday, June 8, 2023

Tonight's picture was taken in June of 2004. Mattie was two years old! You may not be able to determine what we were doing in this photo! Mattie was sitting on my lap and in front of us was a laptop. We visited a couple of educational websites and would play games, sing songs, and solve puzzles together. Mattie loved mental stimulation and as his mom I had to find various outlets to challenge and keep him engaged.

Quote of the day: Every day may not be good, but there is some good in every day. ~ Alice Morse Earle

I decided to visit my old salon in Washington, DC today! My hairdresser, who moved out of the country for three years, has returned to our area! As soon as I heard she returned I booked an appointment. Since my parents have been living with me, I am lucky if I get my hair cut and styled once a year. My hair looks like a Brillo pad. Of course trying to get to an appointment alone practically feels like I had to move heaven on earth to make it happen. 

My dad had his physical therapy appointment today at home, and I alerted his therapist that I wouldn't be around. I am quite certain that when I am not around it sets off a bad dynamic between my parents and this stress exacerbates my dad's irritable bowel syndrome. 

I haven't been back to this particular salon in years! However, when I was in my twenties, I used to go there. It was the premier salon in the city. It is a salon that takes you back to a by gone era, when there was elegance, style, and people weren't rushed through the salon process. In fact, the salon is filled with photos of celebrities it served over all these decades. This was a very popular feature of salons on the past.... having a wall of fame. Now I am sure if college kids went to this salon they wouldn't know any of the celebrities displayed on the wall. A rather sad commentary. But being in this salon today was magical, as I know the owner and I am familiar with the space. 

I had a deep conditioning treatment done to my hair today, which meant that I sat under a hair dryer for twenty minutes. Imagine 20 minutes undisturbed? They gave me a cappuccino and I got to hear the twirling of the dryer, and air passing over my face. In some ways, I imagined being on a ship, away from the hustle and bustle of my life. Truly the dryer was therapeutic as was reconnecting with my stylist!

When I left the salon I was in a good mood. Unfortunately that mood did not last long. When I got home, my parents wanted to go and eat, which meant I did more driving around. I felt worn out today and sick to my stomach. I couldn't eat and brought the food home and I gave it to Sunny. While dining, I took my dad to the restroom twice and the second time, he had pooped all over himself, which meant a big clean up job for me. 

I truly do not know how I deal with each day without a break. My dad is aware of the burden he places on us, or at least he was today after listening to my mom and me converse. I try to explain to my dad that it is the situation and frankly what he can't comprehend is that I am caregiving for two people not just one. All I can say is I hope tomorrow is a better day, because tonight I am frazzled. 

Wednesday, June 7, 2023

Wednesday, June 7, 2023

Tonight's picture was taken in June of 2004. Mattie was two years old and that day we were playing with Mr. Potato Head. As you can see, Mattie got a hold of the toy's glasses and decided to put them on himself rather than on Mr. Potato Head. Life with Mattie was never boring and I most likely captured this moment in time to illustrate my feelings about him. 

Quote of the day: If we are asking for the world to be kind, we must first ask what are we doing to add more kindness to the world. If we are asking for the world to be more loving, we must first ask what are we doing to add more love to the world. We are the vessels for the things we seek. ~ Joél Leon

Tonight's quote is quite poignant. If we want to receive kindness, we also have to be able to give it. This morning was a poor example of my ability to give kindness. I will explain it in a nutshell. I went about my usual routine and then got my dad up and in the shower. While cleaning up his bathroom, I could tell by the sound of the shower water, that my dad was doing something out of the ordinary! When you care for someone daily, you get to know every move and sound. In any case, I asked my dad what he was doing in the shower. At which point, he told me he had to poop! My life has turned into being fixated on poop or cleaning it up! In any case, I now keep a big hospital basin in the shower, because instead of him going all over the place, it is a lot easier for me to contain the mess and clean up the basin. It is unfortunate that my dad can't move quickly, so there would be no way I could safely get him out of the shower to use the toilet. So I grabbed the basin and caught an extremely large bowel movement. I have learned the hard way how to manage this process, because if I don't he goes everywhere and then spreads it all over the shower. 

Needless to say, I had a full morning by the time I brought my dad downstairs to have breakfast. Just as I got him settled at the table, and I was able to sit down to have my own breakfast, my cell phone rang. I could see it was my endocrinologist's office, most likely to discuss my access to the bone density medication that I take twice a year. It was my doctor's nurse on the phone, who is an officious individual on a good day. But this morning, my patience was lacking. Any case, she started in with me about my health insurance and the fact that I could NO longer get this shot administered at the doctor's office. That my health insurer requires me to go to an infusion center. Truly I LOST it! I basically told her I am caring for two 88 year olds around the clock, and I can hardly find time for my own care. So there is no way I am going to an infusion center. I told her she had to figure this out and that her job is to advocate for her patients and to make the process easier for us, not more complicated. I am quite certain she did not know what hit her, but I am tired of fighting the system every step of the way. I do it daily for two people, I would hope that someone could just do their job and also have some compassion for the complex lives patients face. 

This afternoon, after taking my mom to her physical therapy appointment, we did some chores. Before heading home, I took my mom for tea and a snack. When we walked into our local Starbucks, it was packed. There weren't any tables and chairs available. But there was a woman, who is a writer, and a frequent flyer at our Starbucks, who noticed us and popped up. She literally gave up her table and chairs and she went to sit at the high top table with a chair that had no back. She has observed us enough at Starbucks to know that my mom needs to sit in a certain chair. I thought her offer was so kind and thoughtful that I went up to her and told her I wanted to buy her a snack. She wouldn't accept anything! But she said that she was a caregiver to her mother and understands how challenging the role is! When I told her that I also care for my dad at the same time, she couldn't get over it! She said someone should be treating me! Any case, after experiencing this stranger's act of kindness, I felt badly about how I treated my doctor's nurse! I chalk it up to her catching me at the wrong time this morning, but when she eventually calls me back, I will find a way to thank her for working hard to get me access to the medication that I need. 

Tuesday, June 6, 2023

Tuesday, June 6, 2023 -- Mattie died 714 weeks ago today.

Tonight's picture was taken in June of 2004. Mattie was two years old and was visiting with Peter's parents in Boston. Peter's mom had this cute whale themed kiddie pool. Mattie was unsure of what to make of this whole experience! He was cautious and fascinated at the same time. This was the beauty of Mattie. He had a natural instinct to observe and understand something first before plowing in and exploring. Given Mattie's personality and style, I never had to child proof our home. 

Quote of the day: It is often the small steps, not the giant leaps, that bring about the most lasting change. ~  Queen Elizabeth II

This afternoon, I took both of my parents to the dentist. My dentist is in Washington, DC. So it is a journey for us to get there and thankfully there is a parking garage right next to the office. Otherwise, it would be very difficult to take my parents to this office. As it is, it is a long enough walk for my dad from the car to the office, and he wears out easily. But for now, I am forcing him to walk and take steps because I am a strong advocate of the philosophy.... use it or lose it!

When my dad visited the dentist in November of 2022, he got a very bad dental report. His cleaning produced a lot of blood from his gums and I was told that he had the beginning of tooth decay. How did that happen? It happened because we all assumed that my dad was brushing his teeth correctly. While in the dentist chair, we had my dad demonstrate how he brushed his teeth. We could immediately see that he no longer has the where with all to do this hygiene task. I am not sure why I hadn't figured that out sooner, given that I have to shave my dad daily. He can no longer do this task either, but that was much easier for me to visually see! 

Any case, in November, the hygienist told me to get an electric toothbrush and to brush my dad's teeth daily. She said I did not need to use water or toothpaste. But the electric toothbrush helps to clean the teeth by the gum line as well as stimulate the gums. Given that I do my dad's morning routine of showering and dressing each day, I wasn't happy that I had to add another step to the process. But I did it! 

My dad refers to the electric toothbrush that I use as "the jackhammer." Basically he hates it and dreads the process every morning. But what today proved to me is IT IS WORKING. My dad had NO BLEEDING in his dental cleaning today and the hygienist and the dentist both gave me a high five. In fact the dentist says I have missed my calling! FUNNY!

My dad doesn't understand why he can't brush his own teeth correctly! He asked the hygienist and the dentist this same question OVER and OVER. In fact, he reminded them that for 88 years he brushed his own teeth and doesn't get why his daughter now has to do it for him. So the hygienist took out a model of a set of teeth and gums. She asked us if we ever heard the expression, "long in the tooth." Of course we did! It is referring to aging gums, or just aging in general. With age, the gums recede and therefore more of the tooth is exposed. Therefore she thinks my dad is brushing his teeth the way he always did in the past, but unfortunately he is not compensating for the receding gum line and therefore is only actually brushing half of each tooth! It was an interesting lesson but despite the visual and the repeating the discussion of receding gums, my dad just couldn't get it! Needless to say, my jackhammer of a toothbrush will continue to come out each morning because it is clearly helping his teeth. 

Monday, June 5, 2023

Monday, June 5, 2023

Tonight's picture was taken in June of 2004. Mattie was two years old and that week we took Mattie to Massachusetts to visit with Peter's parents. One of the highlights of the trip was going to Horn Pond. At the Pond were geese, ducks, and swans. Needless to say, we never went there without a bag of bread! Mattie absolutely loved feeding the birds and we loved watching him interact with nature.

Quote of the day: When we do the best we can, we never know what miracle is wrought in our life or the life of another. ~ Helen Keller

Guess what kind of flower this is? It is quite beautiful and a stunning color!!!

It is the blossom of an eggplant! I assume after the blossom, we will see the start of a baby eggplant emerge. It is our first time growing this vegetable, so the verdict is out!

It was a full morning of chores for me. Literally I did three hours of chores and though I wanted to get to Foundation work, it never happened, because I knew my mom wanted to go out to the post office, CVS, and then get tea. A few months ago, I would have felt guilty for not finding time for Foundation work. Now, I have learned to let go of those feelings, because I am only ONE person and I do the best that I can each day. 

On days when my dad is at his memory care center, I sometimes take my mom to our local Starbucks for tea and a snack. I never found a Starbucks in the city that I liked, but our local one is lovely. I have gotten to know everyone working behind the counter. When I come in..... they automatically know what I plan on ordering. Sometimes they even bring our order over to the table for me, as they see all that I am balancing. I appreciate that kindness and sensitivity.

When we arrived at Starbucks, there were no chairs and tables available for us. I noticed one woman was sitting with her computer and taking up two tables. So I went over to her and asked if I could move one table and two chairs so my mom and I could sit. She agreed, but I could tell she wasn't happy about it. Hang on.... there is more!

With our teas today came quotes on the cups! This was a new addition, as this wasn't happening last week. I read these quotes out loud, so my mom could hear them. But I suspect the lady next to us who had occupied two tables also heard what I was reading

The quotes says... If speaking kindly to plants makes them grow, imagine what speaking kindly to humans can do. 

Literally minutes later, the young lady next to us, stood up, looked at us, and then apologized! She wanted us to know that she was zoned out and doing her own work, that she truly did not process the request I made to her for a table and chairs. I thought that was so kind of her to say something, that I responded back very positively. YES indeed, one kind act, leads to many more kind acts. It is a ripple effect and can change one's outlook that day. 

The quote above was on my mom's cup. This one was on mine.....

How far that little candle throws his beams! So shines a good deed in a weary world. ~ Shakespeare

While sitting my mom and I discussed multiple things. One of which of course is our current situation and the impact on me and Peter. The problem with this impact is the incredible stress and layer of sadness (and I assure you there is sadness when seeing a loved one transformed by Alzheimer's disease) is NOT new to us. This is coming on top of Mattie being diagnosed with cancer and then dying. I would say that my marriage has had to endure a great deal of sadness that not every couple has to contend with and face. The problem of course with intense caregiving and in both of my situations, with Mattie and my parents, is the eventual outcome is DEATH. It isn't like I am investing and enduring this intensity with the hope of improvement and a better quality of life. This is a bitter reality and one that does not go unnoticed in my mind and spirit. 

Sunday, June 4, 2023

Sunday, June 4, 2023

Tonight's picture was taken in June of 2004. I remember this moment in time like it was yesterday! We were in Massachusetts and headed to visit a local zoo. On the way to the zoo, Mattie wanted French fries. So we went through the drive thru and I sat in the back seat to help Mattie with the eating process. In fact, now that I see this photo, I would say that when Peter was driving, I always sat in the back seat with Mattie until he outgrew that car seat. I don't know why I did that other than Mattie wanted me back there with him and especially on long car trips, I was the entertainment factor in the car. 

Quote of the day: Thank you for not shying away from my broken heart. Thank you for sitting here as I try and make sense of the pieces, and for accepting the silence when I don't have the words to say. ~ Liz Newman

My friend Denise sent me tonight's quote. I loved it so much, that I am sharing it with you. What I love about it is the sentiments! When facing large and daunting decisions, or struggling through difficult times, I know I deeply appreciate someone listening to me without judgment and without wanting to present me with a solution. With regard to caregiving, the decisions have to come from me. All the advice and directives I receive are not helpful, because at the end of the day, I have to live with my choices and decisions. In addition, chances are whatever solution someone is going to offer, is something that has already been whirling around in my mind. Needless to say, Denise's quote made me feel understood and at the end of the day, knowing that someone understands me, makes me feel less isolated. 

It was another winner of day here! My mom's friends wanted to Facetime with them at 11am. Given that my dad has NO desire to talk or hear from anyone, I took his place. This Facetime call was 2.5 hours long. Since Mattie's diagnosis and death, I no longer have the patience to sit for such long chats. I don't find them meaningful, but instead, I find them stressful and if I have free time (which I don't), I rather go for a walk with Sunny. Another thing I haven't done consistently for months. 

While I was glued to Facetime, our neighbors came over with their kids to use our pool. So Peter was outside with our neighbors and I was inside. It is the story of our lives right now. Peter and I live in parallel, but never have time to just be ourselves, to connect and dialogue in peace, and to have the freedom and flexibility to decide how our days will unfold. This feeling of being held hostage, reminds of the emotional turmoil I felt while living in the hospital during Mattie's cancer care. The only big difference was we had a large community of support, both in and out of the hospital. 

On an aside, I finally assembled my dad's artwork together and put in on an orange and red colorful background. It is up and on display! 

This is a big deal because my dad NEVER chooses to do art projects at his memory care center. But one day he surprised us and painted a birdhouse and another day he did a composition on a coffee filter. I cut the coffee filter to look like a sun, and I then put both creations together to form this composition. 

The highlight of my day was my neighbor, who knows my demanding caregiving schedule, came by and delivered me a homemade pie (apple peach) from the Pie Gourmet! I am a big pie fan, so this is a very appreciated treat!