Saturday, January 14, 2023

Saturday, January 14, 2023

Tonight's picture was taken in January of 2003. Mattie was 9 months old and doing his favorite thing.... riding around in his "tot wheels!" Mattie absolutely loved his walker. Though a controversial gadget, for Mattie it worked. It gave him the freedom and movement he desperately craved. There was NO crawling for him, he wanted to move into walking and running (though he did not have the strength yet to do it independently). 

Quote of the day: Patience is not simply the ability to wait - it's how we behave while we're waiting. ~ Joyce Meyer

Every two weeks, I have two women come over to help me clean the entire house. I have been working with one of these women since Mattie was diagnosed with cancer. In fact, my neighbor at our townhouse in the city paid to have our home cleaned why Mattie was in the hospital. Back then I had no idea which end was up, so I welcomed the help because I had no time to clean anything. I am grateful Blanca doesn't mind coming out to the suburbs to help me, and given that she balances her own family, I tend to be flexible on what days she comes over. This morning, she came at 8:30am. In order for me to get up, get breakfast made, and manage my dad's routine, I had to get up at 6am. Yes on a Saturday! Gone are the days of sleeping in! I haven't slept passed 7am in over a year. 

Given that my mom seems truly exhausted, after breakfast, I set both of my parents up in one of our family rooms. I started the fireplace and turned up the heat in that room to 76. Which is the temperature they both are comfortable at and then I told Blanca not to clean that room today. This was the best decision I made because both of my parents rested, watched TV, and felt very comfortable. 

While they were resting, I went to the farmer's market with Peter. It felt like 20 degrees outside with the wind chill factor and then we walked Sunny for 90 minutes after that. It was wonderful to do something without having to monitor my parents and hear constant demands. Of course as soon as I got back from the walk and my dad heard me, he instantly started to get up to head to the bathroom. 

Later today, we drove to Maryland to take my parents out to eat. Despite all the rest they got, both of them seemed out of it. My dad literally looked like he was in a fog and my mom was super snappy. However, we also continue to see my dad having trouble swallowing food. He eats way too fast and take enormous bites. No amount of coaching or oral regulation helps him. So at time I have to resort to taking the plate away from him and portioning his food. I assure you going out to eat looks like a clinical case study and I juggle this constantly. Eating at home is no bargain either, because on top of the juggling act I also have cooking, serving, and cleaning. So to make a long story short, I can't remember the last time I had a peaceful meal, in which I wasn't jumping up and down, meeting needs, and working.  

Friday, January 13, 2023

Friday, January 13, 2023

Tonight's picture was taken in January of 2003. Mattie was 9 months old and we worked hard at giving him time on the floor to strength his muscles. We had all sorts of playmats and hanging toys to capture his attention. As you can see, Mattie was having a good time and was actually laughing. But I would have to say floor time was not his favorite place to be. Mattie much preferred any kind of locomotion. 

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

It was my usual morning of getting myself out of bed, taking a shower and getting ready, making breakfast, and cleaning up the first floor. Then I headed back upstairs to wake my dad, get him showered and dressed and downstairs for breakfast. Once done with breakfast, we worked on his daily journal (which helps him track his day), and then I drove him to the memory care center. After which I ran some chores and then got back home to take my mom to physical therapy. I spend an inordinate amount of time driving and shuttling my parents from one place to another. Truly that alone is physically tiring, but then factor in everything else and it is amazing that I am still standing. I try not to sit down much during the day, because I am so tired that I could fall asleep easily. 

I am very glad that I moved my mom's physical therapy appointments to Virginia Hospital Center, where my dad did therapy. I am very impressed with the team there and I can already see that the PT is pushing my mom and not coddling her. The last therapist (at another hospital system), was frightened of my mom. She did not challenge my mom and she most definitely did not point out the issues that she has with her posture which impacts her balance. It is important for me to be a part of my mom's therapy sessions because I can see from one exercise to another, she isn't remembering what she is doing. 

In fact, last night I went through her exercise routine with her at home and I would say after it was over, her legs were aching and bothering her. She was complaining so much that I landed up massaging lotion into her legs for about forty minutes. This signals to me that we did too much and also that she needs these exercises, as she is working new muscles groups.

After today's physical therapy session, my mom seemed completely wiped out. She has a headache and muscles in her legs and neck are bothering her. I have told her she needs to have a slower day tomorrow to re-group. Meanwhile, I got a text message today while I was running around from one of our faithful restaurant servers. He was telling me that he did not know who else to reach out to or trust. He injured his eye, specifically his retina, and needed money (of which he doesn't have) to pay for his medication. He tried asking his employer for help and others that he knows, but no one would help him. 

I have been watching his eye progressively get redder and redder over the last two weeks and this last week he has been off of work because of this injury. So I know the request is legitimate. This man was in the military, served his country, and lost his wife to cancer. He has single handedly raised his daughter, who is now graduating from high school and going to college in the fall. There was no way I could let this request go by without responding and helping. So after my mom's physical therapy appointment, we drove from Arlington, VA to the neighboring town of Alexandria. I met up with this server, gave him the money, and told him I expected him to get the medication today and to keep me posted. 

Later this afternoon, I drove to Rockville, MD and took my parents out to eat. Our favorite server, Dawn is there and this week marks the 7th anniversary for her son's murder. So I ordered this special vase with two ceramic butterflies on it and I brought Dawn some flowers. I wanted her to know that we are thinking of her as she continues to face the impossible. 

Thursday, January 12, 2023

Thursday, January 12, 2023

Tonight's picture was taken in January of 2003. Mattie was 9 months old and that weekend we took him for a walk on Roosevelt Island. Mattie's favorite form of transportation was on Peter's back. Forget the stroller or being held. Mattie loved riding high up in the air and having his feet and hands dangling around to explore the world. 

Quote of the day: It is okay of airing out your frustration, just don’t dwell on them. Find out the cause and find a solution of getting rid of it. If you can’t have the solution much as well accept it. ~ Ann Marie Aguilar

As tonight's quote points out, if I don't have a solution to what is frustrating me, I just have to accept it. In many ways, caregiving involves just that.... the acceptance of my situation and finding ways to live with the stresses, frustrations, and constant demands placed upon me. Some times and days I can deal with it better than others. 

I did my usual routine this morning of getting my dad up, washed, dressed, and downstairs for breakfast. In the midst of doing this, my mom was demanding things of me, which was very hard to address while also juggling my dad, who is around 200 pounds. Unless my dad is seated, he is full time project which requires supervision when standing and moving around. 

My mom finally came downstairs for breakfast and presented me with more paperwork that she wanted me to address and to make phone calls. I told my mom last night and this morning that I had an important conference call this morning from 11am to noon. She heard me, but if it doesn't impact her or my dad, she tunes out. Therefore, I told her once again that I couldn't address her paperwork until after I was done. 

Meanwhile, before my call began, I prepped my dad for his fitness session with the trainer (which was going to happen simultaneously with my call) and I got my mom situated in the family room with a fire going, a blanket, and pillows. I tried to plan ahead so that I could have an hour to look normal!

But don't you know it, five minutes my call, my dad had to use the bathroom (which means he passes right in front of my office door which is made of glass). I did not jump up to help him, but I later found out it didn't go well without me being in there! Pointing out once again that I can't take my eye off of him for a minute. After my call was done, my mom started complaining NON-STOP about how cold she was and how she couldn't get warm (despite the fact that the thermostat was on 75 degrees and she was sitting in front of a fire with a blanket!). I honestly feel like I can't win at all. 

Once my call was over, I literally wanted to get some work done. But I have come to accept the fact that this just can't happen when my parents are awake. So I then packed them up in the car and took them out to lunch. There is no level of understanding or appreciation for the fact that I take them out in some shape or form daily. Also they did not ask how my call went today and forget about the Foundation..... that never comes to mind either.

Wednesday, January 11, 2023

Wednesday, January 11, 2023

Tonight's picture was taken in January of 2005. Mattie was two and half years old and as you can see he was my little helper. Or at least I would say that Mattie wanted to be wherever I was. When looking at this photo, I remember those days quite well..... we seemed like we were bursting at the seams with kid cups, toys, and things to stimulate, engage, and entertain Mattie. I noticed it then, like I notice it now in the photo, but I had my priorities and top on the list was always meeting Mattie's developmental needs. 

Quote of the day: There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle. ~ Albert Einstein

It was another busy day here on the farm. I got my dad up, washed, dressed, downstairs for breakfast and Peter took him to the memory care center. Meanwhile, I took my mom for physical therapy and sat through her session. It is very clear to me that her memory issues impact her ability to remember the exercises assigned to her and also her ability to execute the exercises properly on her own. Which means that I now need to take on her exercise routine with her. The problem is she is insistent that she knows what she's doing. However, what she thinks and what she does do not always match up. 

Sunny had his follow up ultrasound today to monitor his tumors. As a recap, Sunny has tumors in his bladder, spleen, and adrenal glands. We have tried two forms of chemo already before starting this third one a few weeks ago. Chemo number one practically knocked Sunny out, so we had to change medications. Chemo number two did not do the job, and instead we got disease progression. So before the holidays we switched to the third chemo and today we were bracing for the worst report possible. 

Turns out instead we received a miracle! Sunny's tumors are responding to the treatment. His bladder tumors are shrinking, as are the tumors in his spleen. The adrenal tumors are remaining stable. We were NOT expecting this news, but WOW it has made us feel so much better. Sunny is an important part of our family and his love, devotion, and support keep us sane most days!

Tuesday, January 10, 2023

Tuesday, January 10, 2023 -- Mattie died 693 weeks ago today.

Tonight's picture was taken in January of 2006. Mattie was three and a half years old and by that time, he LOVED the bathtub. Which was really remarkable, since Mattie hated water for the longest time. However, once he became comfortable with it, he was like a fish. He wanted a bath everyday. The main reason was he loved dumping toys in the water and coming up with all sorts of fun play schemes in the tub.

Quote of the day: The key to everything is patience. You get the chicken by hatching the egg, not by smashing it. ~ Arnold Glasow

Honestly if I knew how any given day would turn out, I probably wouldn't get out of bed in the morning! My dad's fitness trainer was coming over this morning at 11am. Things were running smoothly and I finished my dad's morning routine before Teddy arrived. While my dad was doing his exercises with Teddy, my mom was resting (SLEEPING) in the other room. Yes she wakes up at 5:30am, just to fall asleep at 11am. This is a daily pattern. She gets up very early and takes about four hours to get herself together in the morning before she can come downstairs for breakfast. 

Once Teddy left, I woke my mom and told her if she wanted to go, now was the time. I left her and got myself together, made my dad a snack, and then checked back in with her. It was at that point that I found her on the phone with my dad's health insurer. When my mom makes a phone call, I always have to listen in initially to see who exactly she is talking to. When I found she was taking to a health insurer, I admit I wasn't happy with this decision. I walked out of the room and decided to do some Foundation work. 

However, I could hear the call wasn't going well. I let her try to manage the call, but about 30 minutes into it, I stepped in. She had two women on the phone, both from the insurance company. Both of these women were adamant that my dad DOESN'T have health coverage anymore and that they have received no monthly premium payments that my mom has been sending in for this coverage. In addition, they said their health insurance company doesn't cover the state of Virginia. I honestly was perplexed, but they told me I had to go back to my dad's employer and find out what was going on with his benefits. Mind you he is retired! They said that did not matter. 

When I tell you that this dysfunctional call sent me on a two hour wild goose chase, I am NOT KIDDING you. I literally spoke to two human resource people at the company my dad used to work at and they were lovely! Lovely but one couldn't answer my questions and the other said that my dad retired in 2001, so any benefits he is getting is now out of his own pocket. After a complete run around, I decided to call back the health insurer again. Yes I know we had a 45 minute call with them already, but I felt like I had no other choice. They were the only ones who could provide the answers! 

With this second call, I had my act together and had in hand documentation of coverage and the simple fact that this insurer has been paying my dad's medical bills. However, this representative I got on the phone was like a night and day difference from the first two. She found my dad in the computer system, found all the premium payments, and answered my mom's original question. The original question which precipitated the phone call three hours ago! 

I am simplifying this nightmare, but at one point, I assure you I wanted to scream. My mom, as I told her today, is a walking train wreck. Yet refuses to ask for help! Instead, she walks into calls and interactions and most likely confuses whom ever she is talking with, and at the end of the day, I have to come in and clean it up the mess.  

This all requires a great deal of patience. Both of my parents have no understanding or insight for the amount of time they absorb in my day. In fact, I don't think they give it any thought, as my existence is to manage their needs, concerns, and care. So unlike what tonight's quote implies, today I most definitely wanted to smash many eggs. 

Monday, January 9, 2023

Monday, January 9, 2023

Tonight's picture was taken in January of 2006. Mattie was three and a half years old and that day in preschool, I came into the classroom and brought two handmade gingerbread houses for the children to decorate. I never made gingerbread before in my life. But when I asked Mattie's teacher if there was something I could do for the classroom, she requested this activity. I remember I contacted Peter's mom and asked her for her gingerbread and her royal icing recipes. Given that I never assembled a house before, these two came out quite well. The children absolutely LOVED the activity, so much so, that every classroom in the school got a chance to come into the room and work on these houses. One little girl had me laughing. She thought the royal icing was glue. When I told her that it was royal icing, which was edible, she tried it immediately. It was priceless. 

Quote of the day: It is not important what is said, what is important is what is heard. ~ Jeffrey Fry

My mom and I had a family meeting with the staff at my dad's memory care center this morning. We asked for this meeting because their quarterly evaluations of him seemed very basic, and not very specific to him. They tell families that they welcome meetings any time, so I scheduled one. 

My dad started this program in March of 2022. Therefore he has been there many months now, and the program should be routine for him, and the staff should know him well. In attendance at the meeting was the program nurse, the program director, and social worker. I am not sure what I was hoping would occur from this meeting, but I assure you the only thing the meeting produced was FRUSTRATION. 

I am very aware of the fact that my dad has moderate stage dementia. That improvements are not going to happen, only decline. I am a realist, but I am also an optimist in the sense that I believe with structure, some responsibility, and working his brain that this could help maintain his current level of functioning.  I strongly believe that some sort of intervention is better than nothing. 

We came in today to discuss my dad's engagement within the program, as well as his socialization with others while there. When we asked what his days look like, they told us he is VERY engaged, NEVER sleeps through a session, and LOVES the activities like trivia and brain games. They also said that he does converse with classmates. To make a long story short, the person they were describing did NOT sound familiar to me at all. I told them if I did not know better, I would think they were talking about a completely different patient. I also expressed that I can't understand how they experience him one way and we a totally different way. 

The program director said she would send him home with brain games to do at home, since he loves them so much. So I stopped her in her tracks. I asked her how were these trivia and brain games done in class. She said as a group, and they do things together. OF COURSE, because my dad and probably others can't process through anything without supervision and assistance. The last thing I need is more activities at home in which I have to sit down and do them with my dad. I say this because I do this daily already! Instead, I am looking for activities he will self start and want to try to complete. What I have sadly concluded is those days are done, and I just have to accept this! 

In fact, the staff confronted my mom and told her what she expects from my dad (such as for him to report back one thing he did at the memory care center each day) is unreasonable. I certainly know this, as my dad can't retain anything past about thirty seconds. However, my mom said she wants him to write in his notebook while at the center (give him a small notebook for his pocket). The staff said if we give them a template, they will get him to complete it. My mom was happy with that! I was NOT! 

I told them outright that I am not looking for one more activity for Vicki to do and be responsible for. I already keep a calendar for him, a white board, and a daily journal at home. I am not going to also do a template for THEM! The reason I chose their facility is because they focus on dementia support. Therefore, it would be my hope that they would want to integrate memory strategies into the day for every patient. I told them every patient should have a notebook and given the time to use it. Using it could mean different things per patient. Even drawing a picture, a dot, or a writing a word means something! I told them that this is very frustrating for family members, as we can't communicate with my dad about his day and he gets frustrated because he remembers nothing. Which is why a notebook can be helpful. I don't care what form of dementia someone has, I truly believe encouraging participation and engagement contributes to quality of life. So I told them they need to prompt my dad to use his notebook throughout the day. 

They pushed back at me, but I kept at it. My dad's speech therapist (from months ago) believes he is capable of reflection with support and prompts. I told them I do this for him at home, and at the least they should be doing this at the center. Otherwise, what's the point of going to a memory based care center? We specifically chose such a center with the expectations that they are skilled with this population and work with participants on memory strategies.... writing, repeating, associating, and picturing.  

So there was disagreement about my dad. They view him as a peach and I told them sure.... he isn't a behavioral problem, doesn't wander, doesn't cause commotion, and is compliant. So from their perspective he is EASY. But that doesn't scratch the surface on my dad at all. They think he loves their program, but I know he doesn't! He never looks forward to going. 

But what got me most upset about today was I felt UNHEARD and NOT VALIDATED. It was like talking to three poker players. They showed no emotion, did not try to normalize things for us, or be empathetic about all that I am balancing. I can not imagine sitting in front of a caregiver and acting this way. They provided no information about the disease, no normalization that this is how others are within the program, and certainly telling me that he is happy, engaged, and talkative within the program, makes me feel that I am doing something very wrong at home. Overall, it was a rotten meeting and when I got back into the car, I was so livid and angry, I couldn't even talk until I calmed down. 

Sunday, January 8, 2023

Sunday, January 8, 2023

Tonight's picture was taken in January of 2009. We took Mattie to New York City to start an experimental treatment. In between hospital visits, we toured the city. That day we went to the Empire State Building. Specifically we went up to the 102nd observation floor. The Empire State Building was not busy that day and there were NO lines. We zipped from one floor to the other and Mattie had a great time exploring the world from this incredible height. 

Quote of the day: Kindness is a passport that opens doors and fashions friends. It softens hearts and molds relationships that can last lifetimes. ~ Joseph B. Wirthlin

This morning Peter sent me a text message suggesting that we walk Sunny at 11:15am. Yes, we live in the same house, but we text each other throughout the day. This is typical for us, a pattern we developed while caregiving for Mattie in the hospital. During our Mattie days, after he was diagnosed, Mattie did not like hearing Peter and me talking. Mattie was very anxious and traumatized and noise truly bothered him. Therefore, if Peter and I wanted to communicate with each other, we turned to our cell phones. I became an expert at pecking away on my phone and my phone became my life line to the outside world. Unfortunately that hasn't changed for me even today!

I am once again am facing a challenging caregiving role. If Peter and I want to have a private conversation, it can't easily happen in our own home. So we text message. Fortunately we are survivors, caregiver troopers. We just jumped right back into a pattern we grew to know SO SO well. After Mattie died, it took us time to re-learn how to orally communicate with each other, as we hadn't had this opportunity for months while actively caring for Mattie. So many factors could have impacted our relationship and marriage. But with each obstacle, we find a way forward. Remarkably!

I appreciated the opportunity to walk! It is very easy to take on one task after the other at this house. Therefore, someone forcibly stopping me to do something I like to do is a real gift. I like the time to be outdoors, getting fresh air, walking with Sunny and chatting with Peter.