Saturday, January 29, 2022

Saturday, January 29, 2022

Tonight's picture was taken in January of 2006. Mattie was three years old and had come home from preschool that day with a bunch of his artistic creations. That school year, Mattie's symbol was the MOON, as each child received a symbol that started with the same letter as the child's first name. It was within that classroom that Mattie became "Mattie Moon!" It was a name that stuck for many years to come. Even today, we look up at the moon and wonder if our Mattie Moon is looking down on us. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 74,187,602
• Number of people who died from the virus: 883,677

We had another dusting of snow last night. Peter snapped some photos. This is a Chinese Maple in our backyard. Peter had a flashlight on the snow coming down, which you can see as streaks of snow. 

Indie, our cat, LOVES this picture window. She spends a lot of time in this living space. Peter captured the window at night, as the snow was falling. 

We love feeding the birds. We did this in Washington, DC too. Here we have about six feeders and we get all sorts of birds. Today we were visited by a red bellied woodpecker. 

After my usual morning routine, as soon as I got my dad resting in his reclining chair (around 11:30am), we went back at it...... opening and sorting boxes. I only do this on the weekends when Peter can help me. He is doing the majority of this nasty task, as he opens, unwraps, throws out all the paper debris and disassembles the packing boxes. Then my mom and I work on putting the items away. Today's task was overwhelming for me because we sifted through all the items that came out of my mom's pantry in Los Angeles. I assure you it was a ton. I was besides myself and I just did not have the energy to take apart my pantry to integrate their things. So instead of taking a deep breath, I went on a screaming tirade. That is one thing about caregiving non-stop..... it changes my personality. I am tired and have a short fuse. Any case, after my tirade, I worked through the problem which meant pulling apart my pantry and reorganizing everything. It was a task that took HOURS. I think moving is hard enough, but I have had to balance my own move, then my parents move, and unpack twice. It is a lot on a good day, but then factor in caregiving, and it is the perfect storm for me. 

Friday, January 28, 2022

Friday, January 28, 2022

Tonight's picture was taken in January of 2006. Mattie came home that day from preschool with the two gingerbread houses I baked and assembled for his school. That morning all four preschool classes took their turns decorating the houses with royal icing and candies that I brought in. The kids had a ball and as you can see Mattie was all smiles that day as he loved the idea that he got to take the school's creations home!

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 73,938,786
• Number of people who died from the virus: 881,924

Just when I think today will be a better day, something happens and I realize...... get used to it...... this is what life is like right now. I woke up this morning, showered and dressed, then made breakfast for everyone. Before I went to wake my dad up, I called his health care company which is providing physical, occupational, and speech therapy for my dad. I called in a complaint on Tuesday and I was supposed to get a call back from the clinical director on Wednesday. Given that today is Friday, I was NOT happy. Mainly because my dad's health care company in Los Angeles was STELLAR. I knew all the clinical directors and they were very family oriented and worked closely with me. This company in Northern Virginia is NOTHING like the California company. 

When I spoke to the representative today, it was clear that my filed complaint on Tuesday went NO where. Clearly I was a handful for the representative on the phone, so she quickly put me through to the clinical director. Most likely because I told her that they are billing for services that are NOT adequately being delivered. 

The clinical director was lack luster too and did not apologize when I said my Tuesday message did not get through to her. The only message she received was that I was requesting a new physical therapist for my dad. Something got lost in translation because the problem was much bigger than needing a new therapist. I explained to her that the current therapist comes at 4 or 5pm, when my dad is sleepy and out of it. Therefore he can't possibly benefit from therapy at that hour. I have told his therapist that this time doesn't work, but nothing changes, he continues to come at the same time! So I have made it clear I want my dad re-evaluated and given new sessions with a therapist that works with my dad in the morning. 

After this call, I got my dad up and to the shower. He needs help in and out of the shower, but can shower himself. So while he was showering (and I have to time him, otherwise, he will spend 45 minutes in there), I changed my parents bed. That alone is an exercise routine, given the numerous pillows, sheets, and blankets. My dad alone uses TEN pillows. Once my dad got out of the shower, I had to dry him off, and then we have a whole hygiene routine that I follow. But he no longer can dress himself, or knows the sequence to follow to dress himself. 

I got my dad downstairs, we all had breakfast, and then I worked with him on his cognitive and occupational therapy exercises. In the midst of all of this, I was balancing doing four loads of laundry. After I got him settled in his chair, I decided to walk Sunny for two miles. When I got back to the house, I was greeted by chaos. My dad has irritable bowel syndrome and apparently did not make it to the bathroom in time. So poop was all over him and everywhere. It was a big big clean up which I managed. 

Later today my mom was talking to my dad about giving me breaks. Because since I arrived in LA on November 18th, I haven't had ONE day or HOUR off. My dad did not want to hear this and has no perspective about the challenges I balance. He was clear he doesn't want any sort of respite care. All I can say is I take it one day and minute at a time. I learned this technique when Mattie was ill. I don't look at the big picture or even focus on what will happen next week. I only focus on each day at a time. It is the only way I know how to survive.  

Thursday, January 27, 2022

Thursday, January 27, 2022

Tonight's picture was taken in January of 2008. It was only six months before Mattie was diagnosed with cancer. We were SO SO naïve back then, as it never crossed my mind that children get cancer and die. To me, Mattie looked like the picture of health and was out and about with us enjoying nature. This was typical of our weekends.... as we knew Mattie thrived and was one with nature, fresh air, and exploration. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 73,357,903
• Number of people who died from the virus: 878,128

I woke up this morning, got myself showered and dressed, and then began my chores. I did not make breakfast this morning because I was taking my parents to the doctor for a blood test and a urine analysis. Therefore my parents could only have water, tea or coffee (without sugar and milk). I made my mom a thermos of hot tea and while she was drinking it, I went upstairs and got my dad up, showered, and dressed. 

I give myself credit for remembering to catch my dad's urine at home (in a sample cup). This spared me for having to juggle this at the doctor's office where it would be much much harder. So I literally put my dad's sample together, and left it outside in the cold, while showering him. We left the house at 10am to head to the doctor's office. But literally I have to get up very early in order to make all of this happen! Meaning it just doesn't happen without a great deal of planning!

I wasn't sure how it would go at the doctor's office, but the doctor's new phlebotomist is lovely. She worked with my dad first, and though it was hard to find his vein and draw blood, she did it. Thankfully I put a short sleeved undershirt on my dad, because trying to roll up his sleeves and maneuver him is difficult. After he was done, I moved my dad to the doctor's lobby to sit in a chair until my mom was done. While my mom was giving her urine sample, another patient showed up for blood work. I literally told the patient that my mom was next and she had to wait. She handled that well. Since I was juggling both my dad and my mom, apparently the phlebotomist found me helpful. So much so, that she sent me into the hallway with a post-it note to ask the next patient to write down her name and birthdate for the record. A riot no? 

We managed all this testing in about an hour. After which, I got my parents back into the car and we headed out to lunch. I figured they would need to eat soon there after because they had no breakfast. Before going to lunch, I got to the Foundation's post office box and picked up mail! To my surprise several checks were awaiting my arrival. I try to check the box every two weeks now. It is an effort because I do not live close to the post office anymore and of course I have my parents in tow. But this is a fantastic post office, with people who look out for me and the Foundation. So I am NOT moving our PO Box!

Don't you know it, as soon as I walked in the door at 3pm, Sunny greeted me and wanted to GO FOR HIS WALK. Coming home is never easy because I have to get my dad into the house, help him get his coat off, manage any bathroom needs, and then get him to his chair. Literally my dad wants instantaneous support that I can NEVER meet my own needs. Meaning I am helping him while holding bags, balancing the dog, and wearing my coat! 

I can't go out to eat with my dad without bringing a bag filled with stuff in tow. Things like tissues (as he gets a sneezing fit when his stomach is full), garbage bags for tissues, jam for bread (as he can't eat butter), red wine vinegar (because not every restaurant has it), ketchup (because he uses a ton), cookies (because he wants dessert but never anything on the menu), wipes, depends, and the list goes on. While at the restaurant today, my dad wanted to go to the bathroom. He can NO LONGER manage this alone. Besides the fact that he can't find the bathroom, he no longer understands the sequence of things to use the bathroom effectively. Therefore, I have to take him and help him every step of the way. Fortunately for my parents I have a strong constitution and have a history of caregiving for people. My dad has Irritable Bowel Syndrome too and today alone he had three bowel movements. The thing is you can't predict when they will happen, but by the time he realizes he has to go it is a major emergency. So much so that adult undergarments can't hold back what comes out!

Any case, by the time I got home I was tired. But of course couldn't stop working. The dog needed to be walked. While walking Sunny, I met two of my neighbors on the next street over. They were out walking and they took a liking to Sunny, because they once had an Australian Shepherd. Long story short, the woman in the couple was telling me that her father died last year and was his caregiver (though he lived in a facility). She mentioned that now her health is failing and she is recovering from surgery. I explained to her that my parents are living with me, but I did not go into detail. One thing is for certain, having a dog truly helps you meet people. 

Wednesday, January 26, 2022

Wednesday, January 26, 2022

Tonight's picture was taken on January 31, 2009. That day we took Mattie out to one of his favorite restaurants. This was something Mattie did often, which was to come up to me cheek to cheek. Or better yet, there were times he'd put his forehead on mine and look directly into my eyes. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 72,558,842
• Number of people who died from the virus: 874,886

It maybe the end of January, but we have most of our potted plants inside for the winter. It is our bit of green! This week our amaryllises are blooming!

Isn't this one glorious?

A close up!

My day started with a text message that made me very upset. The tone of the message was I need support from caregivers. Not only because this will help me but because this current situation will impact my marriage. If all of those statements weren't bad enough, then it was thrown at me that I am an only child, therefore this is my plight. As if having multiple siblings would lighten the load of caregiving. 

Needless to say, I pushed back on this person and also pointed out that caregiving typically falls onto one child. Regardless of how many children a person has! As for my marriage, I would be very cautious throwing out such words, especially to a couple who has survived childhood cancer and child loss. This is the worst thing a couple can face PERIOD. 

Meanwhile today my dad had an evaluation from a speech therapist. She is wonderful. I learned today that speech therapists do much more than the name implies. Speech therapists are trained to evaluate memory loss and to develop strategies to help stabilize the loss. In any case, I look forward to learning more techniques. Rebecca did an evaluation today and I watched my dad answer a battery of 15 questions. Some he did well on (what year and state he is living in) and others were problematic (recalling words, comprehending a short story read to him, and identifying shapes). 

Tuesday, January 25, 2022

Tuesday, January 25, 2022 -- Mattie died 643 weeks ago today. 

Tonight's picture was taken in January of 2009. Mattie attended a birthday party that day and one of the activities took place in a circle on the floor. As you can see, Mattie was on the floor, but he couldn't bend his knees and legs like the other kids. Some of the children at the party did not know Mattie or his story. So his bald head and physical awkwardness caught attention. In fact, a few of the kids made fun of Mattie. However the kids that knew Mattie and were his friends literally spoke up and put the other ones in their place. It was something that I will never forget!

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 72,054,567
• Number of people who died from the virus: 871,483

My fuse is short today! Everyday I get up thinking.... today I will accomplish something! But of course that is like setting myself up for a big fall. While doing the morning routine today, I got a phone call from my dad's physical therapist. He wanted to come over at 4pm today. I reminded him that this is NOT a good time for my dad. If you have been around people with dementia, you know they begin to fade, which is why it is called sundowning.  However, he is a contractor and therefore this is the only time he can come over. 

My morning started once again with my dad pooping in the shower. Which of course means that once he is out of the shower, I have to scrub it clean. That may sound easy, but I am juggling a thousand things all at the same time. On top of everything else, I got myself to the grocery store today because they are threatening that another snow storm is upon us this week. Thankfully our store is fully stocks again! I was thrilled to see chicken and vegetables. I bought a ton of things, came home, unpacked it and started making chicken barley soup from scratch as well as tonight's dinner. In the midst of all of this, I am cooking and serving three meals a day, doing laundry, cleaning, assisting my dad with every moment, including bathroom trips, and the list goes on. 

Poor Sunny, I think he imagines I abandoned him. Gone are our 11am daily walks. Now unfortunately I walk him when I can. I do it daily, but the timing varies. Sunny's walks are therapeutic for me as I get out of the house, and have the chance to move faster than an 86 year old. For that period of time, I am not meeting needs or addressing demands. 

In addition to managing my dad's needs, my mom also has needs. Some of which involve paying bills, banking issues, and changing addresses on all their accounts. For the past two days, it has been non-stop phones calls. Honestly, one more task, and I am going to blow. 

As for the physical therapist, he came at 5pm! Peter gave it to him and I just got off the phone with the healthcare company. I have made it clear that if they do not correct this timing issue, I will find another company to meet my parent's physical therapy needs. I am told that the clinical director of the agency will be getting back to me tomorrow. 

Monday, January 24, 2022

Monday, January 24, 2022

Tonight's picture was taken in January of 2009. Mattie loved doing puzzles. Frankly this wasn't on the forefront of my mind until I saw this photo. Then of course it came back to me. Mattie gravitated to puzzles even as a toddler. He was fascinated by how things worked, went together, and matched.

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 71,437,265
• Number of people who died from the virus: 868,027

My dad's occupational therapist came over today. I like Donna a lot and I am saddened she can't work with my dad long-term, thanks to Medicare! In any case, Donna gave my dad today a cognitive test, called Trail Making (this is a sample photo). Basically it assess how well one can sequence information. So in this example, he had to take a pen and draw a line from 1 to A. Then 2 to B. So number to letter, letter to number, etc. Up to number 25. 

Donna says that the average person can do this exercise in under two minutes. Those who take over two minutes, clearly have cognitive issues and when being evaluated to determine if one can safely drive a car, if one takes more than two minutes to complete this test, then this would show that one will most definitely have issues driving. My dad did this 1-25 test in five minutes today. My dad hasn't driven in two years, so that isn't an issue, but Donna's test clearly showed cognitive problems. Problems I face daily. 

All of this is rather hysterical to me because when my dad had his physical last week, the doctor, who I nicknamed Dopey Doo, asked him some basic questions to assess his cognitive ability. He asked my dad to name the current president and vice president. My dad had no problem with that. So from the doctor's perspective, my dad looks intact. But if you scratch the surface or even asked me some basic questions, then you would know that my dad likes listening to the news. Therefore, he will most definitely hear over and over again such info as the president and vice president. But moving beyond that, my dad really can't remember anything you told him five minutes ago. He also has large gaps in long term memory as well. To me this doctor doesn't get my dad or even what I am up against. The doctor says he's an optimist and is hoping for my dad to regain strength and move from using a walker to a cane. 

Got to love this doctor! I am a realist and have followed my dad's case since he was hospitalized in 2020! My dad will NEVER go back to using a cane. It's a safety issue and his balance and judgment are no longer good. But this doctor refuses to confer with me. I spoke to my dad's occupational therapist today and she of course agrees with me. It doesn't take a rocket scientist to see the reality! 

The occupational therapist acknowledged me today, as she knows I am doing all the caregiving in the house. She also learned about Mattie and Mattie Miracle, and commended both Peter and me. Not that I need kudos, but my days are long and I appreciated her kindness in telling me that I am doing a great job.

Sunday, January 23, 2022

Sunday, January 22, 2022

Tonight's picture was taken in January of 2009. Mattie was home between hospital visits and was playing on the floor with Peter. After their Lego building session, they took a break and Mattie crawled on top of Peter. I thought this was such a cute and tender moment, that I snapped a photo! Our living room back then was full to the brim, with a hospital bed, a commode, IV poles, and a ton of toys.

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 70,699,416
• Number of people who died from the virus: 866,540

After another full day of caregiving and unpacking many more boxes in the basement, I decided to take my parents to the Normandie Farm Restaurant. It is a legendary restaurant in our region that dates back to 1931. I was saddened to learn today that the restaurant is closing in June, permanently. I imagine the type of fine dining it once provided no longer interests most people. Unfortunately I don't agree with most people. 

Peter snapped this photo of us today, and the first thing I noticed is I look exhausted. I know how I physically feel, but it is another thing to see one's self in a photo. We need to eat earlier in the day because after 5pm, my dad can't keep his eyes open. 

I looked up the restaurant and learned that the original owner was Marjory Hendricks. She was born in Seattle at the turn of the century and raised in Butte, Montana, Chicago and Madison, Wisconsin, moved to the Washington area with her family in 1918. She attended Bryn Mawr College, married in 1923, had a son, got a Reno divorce in 1927, spent two years in France studying cooking and returned to the Washington area in 1930.

A year later, according to Normandie Farm history, she drove by a patch of land in the Maryland countryside, once the Myers Farm, that was being transformed into a country club; construction had stopped when the Depression hit and the mortgage holders had put up the land for sale. Hendricks stopped in her tracks; 45 minutes later she had bought the land and began her life as a restaurateur. Her sister Genevieve decorated the place, and pictures in today's lobby from that era show a rustic interior awash in provincial-style fabrics. Genevieve also painted French sayings on the enormous wood beams that support the vast, barnlike roof of the main dining room and the lyrics to "Alouette" on the walls. The place became a destination, the end point of a trip to the country for some of Washington's elite; Eleanor Roosevelt was a regular.

The restaurant is famous for their popovers. Honestly you could just give me a basket of these cuties with jam, and I would be a happy camper. My dad ate for three people today!

I wish I could say that the basement is now empty. But Peter told me he did a count and we still have 50 boxes, 36 bins, and 20 framed art boxes to unpack. It feels like we have so much more to do and frankly today all I wanted to do was put my head down and rest.