Saturday, February 11, 2023

Saturday, February 11, 2023

Tonight's picture was taken in March of 2003. Mattie was 11 months old and we took him on his first plane trip to Los Angeles. That day, we took Mattie to the Huntington Gardens. I absolutely LOVE this photo. Mattie was riding around on Peter's back and came across some bamboo. Mattie absolutely detested a stroller! We learned that early on and thankfully it was Peter's mom who convinced us to try a back pack! Apparently this was Peter's favorite mode of transportation. Like father, like son! Mattie was absolutely fascinated with the bamboo! Actually both Mattie and Peter had great expressions on their faces and yet neither knew I was snapping a photo of them! 

Quote of the day: Perhaps the secret of living well is not in having all the answers but in pursuing unanswerable questions in good company. ~ Rachel Naomi Remen

No matter what time I get up, it is never early enough. I had high hopes today that after I got my parent's settled after breakfast that I could get a lot of Foundation work done! Unfortunately that did not happen and when this is the case, I get very frustrated! As I feel great pressure to do things, and yet in all reality I am lucky that I can get up and showered in any given day. 

This afternoon, we drove to Rockville, MD to take my parents out to eat. We visit this same restaurant weekly and in fact we followed Dawn, our server, from Reston, VA to Rockville, MD. When the Reston restaurant closed (which was minutes from where we live), we were so fond of Dawn, that we followed her to Maryland and make the long drive weekly. In theory, this restaurant in Maryland isn't far away geographically. What always gets me is highway traffic! So for example when I drove there on Friday, it took me over an hour to get there. 

So why go there? Why not just go somewhere five minutes away? The simple answer is.... the people! I can't quite explain this, but Dawn has a way of getting my dad out of his stupor. While in her presence he is more engaged and tries to participate in conversation with her. The emphasis is try! Mainly because my dad will ask her the same thing over and over again throughout the meal. Most people would have lost it with this conversation, but Dawn gets it, and goes with it. 

In my opinion, this kind of friendship, stimulation, and care are worth the trip. Of course that would mean that my dad's needs supersede mine, and in this case, I would say that for the most part I put both of my parent's needs above my own and I work hard at keeping them active, physically healthy, and engaged with the outside world. I assure you this is no easy feat! 

Friday, February 10, 2023

Friday, February 10, 2023

Tonight's picture was taken in February of 2003. Mattie was ten months old and I know I must have snapped this photo at the time to capture the multitasker in Mattie. He was sitting in his tot wheels, zooming around our first floor, checking out the furniture and everything in the drawers. Mattie had a natural curiosity and joy of life, and his energy was contagious. As I know he pushed me out of my comfort zone with many of our activities and adventures. 

Quote of the day: We are not meant to live in isolation. Not in nuclear families or bubbled existence. The richness of life is found in community, in cooperation, in becoming a part of a greater whole. Expand your bubble, drop your shield. Invite love in. Do not attempt to do it alone. ~ Jeanette LeBlanc

I did my usual routine this morning and then took my mom to her physical therapy appointment. I schedule her therapy sessions on days my dad goes to his memory care center. It would be very difficult balancing both of them, while observing my mom's session. My mom had quite a workout today, as the therapist is really challenging her with balance and walking stability. 

After the session, I gave my mom the option of getting tea of going home. She chose to go home, as I could tell she is exhausted from the session. This gives her about an hour to rest until we pick up my dad. 

Since the weather is beautiful out, I had my mom walk up and down the driveway. Our driveway is on a bit of a slope and the therapist asked me to video my mom's movement up and down a slight incline. Given that it is in the 60s today, I decided to have my mom get this task done, as I know the weather this weekend will be colder and she will not want to walk outside. 

What I juggle in any given day is remarkable. It is hard to put it into words, other than I feel like I move from one task or crisis to another. 

When I got home, Peter surprised me with cards, flowers, and a goodie basket for Valentine's Day. It was a lovely and thoughtful gift to receive, especially with how we are living our lives right now. I don't feel great about myself on any day, but it is nice to know that Peter wants to celebrate me and us. It makes me pause, reflect, and of course be grateful. I learned with Mattie's diagnosis, things can always be worse, and physical health deserves to be celebrated. As does having the love of a caring, patient, and supportive husband. 

Thursday, February 9, 2023

Thursday, February 9, 2023

Tonight's picture was taken in March of 2004. Mattie was almost two years old. That weekend we took him to the Children's Museum in Washington, DC. It was our first and last trip to this Museum. I was underwhelmed with every component of this space. Nonetheless, we made the most out of it with Mattie. Mattie and I were in front of a very large sandbox. Mattie was fascinated by this, especially since it was inside and not part of a playground. The one great part about this Museum was the hands on exhibits and activities, and Mattie gravitated to all of it. 

Quote of the day: Communication is merely an exchange of information, but connection is an exchange of our humanity. ~ Sean Stephenson

After my usual morning routine, I then woke my dad up and proceeded to change their bed linens and get him into the shower. Before putting my dad in the shower, I always first ask him whether he has to go to the bathroom. Despite my best efforts, that doesn't prevent him from having accidents. This is becoming a more regular problem. 

My dad can wash himself, as long as I prep everything for him. I have him set up with a shower chair inside the shower, so once I safely place him in the chair, he can shampoo his hair and wash himself with soap. Therefore, when he is in the shower, I am making their bed, cleaning his toilet, and collecting garbage in bathroom waste baskets. This morning while doing all of this, I could see out of the corner of my eye, my dad standing up in the shower. He never stands in the shower, unless he is pooping. Sure enough, the smell hit me before I could see the mess. 

So not only do I have to make sure he is clean, not getting poop all over himself and the bathroom floor, I also need to scrub the shower, his shower chair, and bath mat. I assure you it is not a pleasant way to start the morning. Honestly after all of that, that would be a full morning for most people. Not for me. That is just the beginning of a long day ahead. 

After I cleaned the shower, I got my dad dressed, brushed his hair, shaved him and got him downstairs for breakfast. Once breakfast is done and I clean up the plates, I then do his cognitive exercises, followed by his walking routine. Once his routine is over, I then get my mom on the treadmill and help her with her routine. 

By 11:30am, this was my sighting! Both of my parents were out cold. If I did not keep them engaged and moving, they would sleep the day away. 

Meanwhile, my dad's sugar levels are rising and the doctor wants me to limit his bread and sugar intake. None of us have been effective at managing his sugar intake his entire adult life. Now that he is 87 years old, I am a realist. I can try my best, but at the end of the day, if this is what makes him happy, I am not going to deny him this. So if my dad has to return to being on diabetic meds, I will deal with it. He was on them for decades prior to getting sick in 2020, so the pattern continues. 

I tried buying him sugar free cookies, chocolate pretzels and fudge. He hated all of it, and it was a complete waste of money. 

This afternoon, I took my parents out to eat. We go to a restaurant in Alexandria every Thursday. This restaurant happened to be Mattie's favorite over the years. Therefore, I have a long history there. Since my parents moved in, I spend a great deal of time there and I have gotten to know the managers, the hosts, and the general manager. They are all wonderful people, who truly love their jobs, and enjoy getting to know their customers. 

Today when we walked in, we were shown to our table. Our server (some of you may remember, I gave him $120 a few weeks ago so he could get his prescription filled for his eye drops, after damaging his retina... his eye has since completely healed!) already had our drinks and appetizers ready on the table. They know that my dad is all about the food. He doesn't want talking unless there is food present. In any case, while my dad was chewing away, the manager, and hostess came over to chat with us. They tell us we brighten their week, and I told them they are a life saver to me. When I have the opportunity to meet fine individuals like this, who truly care about others, it instills hope in my heart that humanity is alive and well.

Wednesday, February 8, 2023

Wednesday, February 8, 2023

Tonight's picture was taken in March of 2006. Mattie's preschool had an auction to benefit the school. At the auction Peter and I bid on this flower pot. Why? Because all the children in Mattie's classroom put their thumb print on the pot. Mattie was super happy that we won this flower pot creation and as you can see, he was beaming about it!

Quote of the day: The secret of getting ahead is getting started. The secret to getting started is breaking your overwhelming tasks into small manageable tasks, and then starting on the first one. ~ Mark Twain

After a full day of my usual routine, Sunny, Peter and I went out for a walk. The weather felt like spring and despite the fact that I have a ton to do, I chose to go out, get fresh air, and to have the opportunity to chat with Peter. 

My caregiving tasks are overwhelming, and unfortunately one of the by products of this is an inability to have meaningful conversations with Peter. I don't have time for me, much less for anything else. Peter and I are well versed in such a problem, as we learned when Mattie was sick, that we weren't the priority. Nor was our relationship. The focus had to be Mattie! Childhood cancer can wreak havoc on a marriage, which is why I am grateful that I met Peter as a teenager, and therefore we have been through a lot together over the years. 

While walking today, look what we saw.... a crocus! I know that Punxsutawney Phil just saw his shadow, predicting six more weeks of winter, but to me this little blossom signals that warmer weather is coming!

Sunny has been having a rough week! He is on a hunger strike. We started him on antibiotics on Saturday because he has another urinary tract infection (which happens with bladder cancer), and this medication is affecting his appetite. He is refusing even his favorites like cream cheese, sausages, mozzarella, etc! 

Today, I encouraged Peter to buy some steak. Peter grilled it outside and don't you know it..... Sunny ate the steak and all the pills hidden within the meat. The vet is encouraging me to give Sunny meats low in fat. I get it, but right now eating is first and foremost, and I need him to eat so he can consume his antibiotics and chemo. So once again, I have to be my family's own doctor! 

For days now we have been struggling to get Sunny to eat. Thankfully today we had a break through. I know this may sound silly, but on top of the usual chaos we manage, when Sunny isn't eating and getting his needed medication, this adds an additional stressor to our already long day. 

Tuesday, February 7, 2023

Tuesday, February 7, 2023 -- Mattie died 697 weeks ago today. 

Tonight's picture was taken in February of 2006. This was a typical occurrence in our living room! Mattie's creations of either Legos, Tinker Toys, or train tracks in towns or cities. In this particular case, Mattie built a structure and he placed himself in the middle. Check out that smile!!!

Quote of the day: It is very strange…that the years teach us patience; that the shorter our time, the greater our capacity for waiting. ~ Elizabeth Taylor

This morning while getting dressed I received a text message from my friend Margy's husband. Ken wanted to show me the compilation of photos his iphone created for him today. These photos capture many of the times I visited Margy at her home while she was battling ovarian cancer. I remember every photo and I am glad that Ken shared them with me. Margy died in March of 2021, but her situation is still one we all can't get over. As Margy was very diligent about her health care. She always went for check ups and lived what we would deem a healthy lifestyle. Yet despite all of this she was still diagnosed with cancer and within three years of her diagnosis she died. 

I am not a big Facebook user, but Margy was the first person I friended on Facebook who I really did not know beforehand. This was back in 2015. What connected us was a mutual friend who also lost a child to cancer. Margy was that child's play therapist. Needless to say, Margy and I shared a very similar philosophy on cancer care and the impact on the child and family. Which is why when Margy died, Mattie Miracle established the M&M (Margy and Mattie) Wishes Program in her memory. In a way, the Wishes program carries on Margy's work that she did for over twenty years, in which she provided grants to children with cancer to fulfill wishes, trips, and other fun events. Events that would create lasting memories for the entire family.  

Needless to say seeing these photos caused me to pause and reflect. Reflect on how cancer took yet another special person from my life, but also these photos are a reminder about how short life is. One has to make the best of life, and better yet, as long as one is healthy, this is the greatest gift. Given my day to day caregiving struggles, sometimes I do not take the time to acknowledge this crucial reality about the importance of health. But as soon as I saw these photos, it triggered this thought process, because to me cancer changed everything for me, and even now I would still say my priorities and outlook continue to be impacted by Mattie's cancer diagnosis and death. 

Monday, February 6, 2023

Monday, February 6, 2023

Tonight's picture was taken in March of 2006. This was a typical occurrence in our home. Mattie loved playing with clay. He particularly loved molding it and sticking it onto his cars, trucks, and trains. Don't ask me why! But there you have it. Of course after play time was over, picking up the clay was an experience. At first I would say I did not like the mess all the clay made, but over time, I got used to it and appreciated Mattie's need for fun and exploration. 

Quote of the day: Some days are going to be more of a struggle than others. That is okay and you need to forgive yourself in order to keep going—and growing. ~ Sara Ahmed

On top of everything else, this is how I spent my Sunday. I did a 24 hour urine catch, which is annual testing I undergo for kidney stone prevention. Given that my parents like to go out to eat each Sunday, I had to bag up this large orange collection container and take it me to the restaurant. I did it and thankfully the sample was mailed through FedEx this morning. 

At first I was going to forego the test and reschedule my upcoming urology appointment. But then I stopped and thought about it and said NO! I have to keep these annual appointments because I want to prevent another issue and surgery if possible. 

It was a typical Monday, in which I performed my usual morning routine. Since my dad was at the memory care center, I had to find an activity for my mom today. So I took her to the mall and out for lunch. While having lunch, she mentioned that she missed her life in California and the activities she used to do. I fall into the same trap everything time, most likely because I am the rational one in the equation. My mom remembers her life back in 2019, and seems to not be in touch with the reality of what life was like during COVID and after my dad had his two hospitalizations in 2020. Honestly for those two years in Los Angeles, her way of life changed drastically. It was also during that time that her cognitive state began to decline and with that, came a physical decline. 

I would love to be able to put my mom on a plane and send her to Los Angeles, so she could see friends and participate in the activities she once did and loved. But those days are OVER. She has NO insight about herself and can't see that she needs supervision and support throughout the day. Dialoguing with my mom can cause massive frustration for me. For the most part I absorb the frustration, but some times I just want to scream.  

If my mom was able to occupy herself in any capacity, then while my dad was at the memory care center, I would have four hours to myself. But she needs as much support as my dad, and therefore, there are never moments just for me. I then told my mom today that if she and my dad were in the same position as me, there would be NO WAY they would transform their lives to take care of two people in need. Naturally hearing that did not go over well, and perhaps that sounded mean to say to my mom. However, I do think she needs an awakening to how their presence is impacting my life. Or lack of a life. 

I think I have extraordinary amount of patience, but I am human. Every human needs time to rest, have a change of venue, and time to socialize and control one's day. I haven't had any of this for over a year. For over 365 days. The reality is this caregiving way of life could go on for quite some time. Which is daunting, but it is also daunting to know that if things change, that is because my parents are no longer alive. Neither are positive thoughts, and frankly all of this leaves my head spinning. 

Sunday, February 5, 2023

Sunday, February 5, 2023

Tonight's picture was taken in March of 2006. Mattie was almost four years old and Peter and Mattie were playing in our living room. Between the living and dining rooms, they put up a big barrier using paper towels. Mattie used this visual to help create a finishing line for his car races and other play schemes. All I know was when Mattie was around, our home will filled with noise, activity, and of course toys and books everywhere. It was an adjustment for me to manage all this clutter and commotion, but it was an even BIGGER adjustment when it wasn't around after Mattie died. 

Quote of the day: If you truly love nature, you will find beauty everywhere. ~ Laura Ingalls Wilder

The highlight of my day today was that it was 40 degrees and I made the time to walk with Peter and Sunny. It is wonderful that a trail into the woods is so close to our home that we can walk to it. Sunny absolutely loves it!

Can you see the deer? There were three, but I was able to capture one on camera!

The usual routine after breakfast is both of my parents nap. When they first moved in, I just couldn't understand this at all. Now I have come to accept it, as there is not much about this pattern I can change. In fact, I encouraged my mom to go to the basement with me and get on the treadmill for 10 minutes (which is part of her PT exercise routine). I could tell she did not want to do it, and was too tired. So I did not push her, but I am finding this is more of a trend, because given all that I balance with my dad, it is hard to fit my mom's routine and needs into the day. 

With all this said, besides my daily chores and existence, I am living the life of an 87 year old with dementia. I see my parents sleeping more than awake, they don't want to engage with the world, and prefer isolation. Which by transitive property, this has also become the way I live my life. Mind you, for me this is a double whammy, because Mattie's death impacted my life. Socially many friends dropped me like a fly after he died, because I symbolized their worst nightmare. Nonetheless, I have tried to rebuild my life in some way since 2009. Now on top of this, I am once again caregiving. Caregiving, and managing a very unnatural situation. Some days I can put it into context, and manage with no problem. Other days, I can feel anxiety taking over, and I feel so overwhelmed and worried that I can't live like this for one more minute. 

Which is why walking, getting outside, and spending time with nature are all so healing. What was true in 2009, and it remains true today!