Saturday, December 11, 2021

Saturday, December 11, 2021

Tonight's picture was taken in December of 2007. Mattie was five years old and looked and acted like the picture of health. Never in my wildest imagination would I think that 7 months later he would be diagnosed with cancer. Each Christmas Mattie got a special sweater in order to take a holiday photo. Mattie was featured on the front of our family's card. Ironically I never captured all three of us on the card, only Mattie. Mattie loved decorating the tree and also loved his Christmas train. Which he assembled around the tree. It was a tradition.

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

• Number of people diagnosed with the virus: 49,874,867
• Number of people who died from the virus: 797,121

Peter and I have NOT bought a Christmas tree or decorated for Christmas since 2008, when Mattie was diagnosed with cancer. When Mattie died, so did most of the joy in our lives. A reality most don't want to hear about, but nonetheless the fact of the matter. 

With my parents moving in, I felt it was important to decorate, as I think it helps to orient my dad to the season and it brings some festivities to winter and the cold. In other words temperatures my parents are not used to. But here's the funny part..... we had a warm snap today, and it close to 70 degrees! 

This afternoon, we took my parents to a Clyde's restaurant in Ashburn, VA. Outside the restaurant were huge nutcrackers. Another guest of the restaurant offered to take our photo, and we did it! It is naturally hard to leave behind one's routine and restaurants one has gotten accustomed to, but we are trying to make new connections and traditions here for them. I have concluded that I will cook Monday through Friday, but Saturday and Sunday, we will go out. I feel this is the best way to manage food, as I want Peter to be a part of our meals and process, and though my parents are used to eating their main meal at lunch time, I am switching this up to dinner time. Otherwise if I kept their LA schedule, we would only eat one meal a day in the afternoon (outside the house), and I would never be eating and connecting with Peter. I am determined to find the right balance and fortunately Peter and I have been through so much already, that we are good working together under the worst of conditions and chaos.

Friday, December 10, 2021

Friday, December 10, 2021

Tonight's picture was taken in December of 2007. This was 7 months before Mattie was diagnosed with cancer. Honestly there were no tell tale signs and Mattie seemed healthy and happy. It was a December tradition that we could go to the US Botanical Gardens. They have an atrium area that feels like a hot house. Which is a glorious feeling in the dead of winter. It transports you to warmer climates. Mattie loved this space and the holiday train display the Gardens set up, mesmerized him. 

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

• Number of people diagnosed with the virus: 49,788,804
• Number of people who died from the virus: 796,349

I set my alarm for 6:30am. However, I just couldn't get up. Maybe I was on Los Angeles time (3:30am) or just plain tired. Either case, I reset my alarm for 7am and by that time forced myself to get up. I know I have to get up because I am responsible for my dad's routine..... getting up, showered, dressed, breakfast, cognitive exercises, PT and OT exercises. 

When I am managing my dad alone, I know that before I get him up I have to prep breakfast. Because as soon as he comes downstairs, he wants to eat. IMMEDIATELY! I went to the refrigerator to prepare his fruit bowl and I saw we had no melon. I thought I told Peter to buy melon, but frankly it is possible I never sent the message. This is where my brain is these days! So I scrambled, jumped into the car and went to the supermarket to get the things I needed. Mind you I wasn't accounting for this extra task. 

I got back home, had to continue prep, and then manage my dad. Certainly the first time you do anything, it's harder. I have never showered my dad in this house before. I know the routine, as I created the routine for his caregivers, but just getting the logistics right here was challenging. 

Of course the house is a new experience for both of my parents. So it requires more guidance and direction on my part. My dad got it in his head today that he had to call his insurance broker. He started dialing and talking, but I could see he wasn't communicating effectively or tracking what was being said. So I stepped in. I am now trying to have an email dialogue with this insurance person, so that we can process the writing and keep the answers. As I know darn well, the verbal responses will be forgotten within five minutes. 

While prepping dinner tonight, the doorbell rang. I went to see who it was and through the window I could see this beautiful and festive basket. To my surprise this was a gift to my parents welcoming them to Virginia. The gift was from several of my immediate friends who continue to care and support me since 2008. I personally think this is totally amazing. It speaks to the quality of the people in my life and I truly believe they are the gifts that Mattie left behind for me. Though this gift was for my parents, it brightened up my day in an indescribable way. It reminds me that I am not alone through this next healthcare and caregiving crisis that I face. 

Thursday, December 9, 2021

Thursday, December 9, 2021 

Tonight's picture was taken on December 31, 2008. Mattie went through several food cravings while on chemotherapy. For the most part he did not want to eat at all, but there were times he really wanted something and Peter and I would jump through hoops to make it happen. That particular day Mattie wanted Chinese food, particularly shrimp! Honestly he never ate shrimp before he started treatment, but his tastes changed and and we went with it. I loved that Mattie wanted to use chop sticks and learned to use them quite well. 

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

• Number of people diagnosed with the virus: 49,661,145
• Number of people who died from the virus: 794,648

My day started at 2:15am. I got up this early because I wanted to shower and dress before I had to pack all our luggage up and dress my dad. Now I have to allot much more time to do anything with my parents in tow. I factor in a good extra 30 to 40 minutes. Somehow I got it all done and we were down in the hotel lobby by 4:15am, in order to meet our car pick up. Last night, I went down to the hotel lobby and brought up a luggage cart and kept it in the room with me. Which made loading luggage and getting to the lobby on time much easier. 

We had a lovely and easy car journey to the airport and our driver understood that we needed to make sure my parents were dropped off first and that I was going into the terminal with them to get their luggage checked and a wheelchair for my dad, while the driver waited for me. My parents insisted that I couldn't be on the same flight as them. That wish made sense when they were mobile, it doesn't make as much sense now. I did comply, but I knew I had to intervene at check in today. Once I got them set up, I jumped back into the car and went to my airline terminal. 

I honestly couldn't keep my head up throughout the flight. A four and a half hour flight felt like an hour. My parents landed at Dulles Airport and I landed at Washington National. Peter picked them up and I took a car service to the house. My driver was from the Democratic Republic of Congo, and was delightful. We literally talked the whole way to the house and he said I made a long car ride breeze by. He commended me for taking my parents in and mentioned that not every child would do this. 

I would like to say my evening was smoother and more restful, but it wasn't. I cooked dinner for all four of us, I unpacked for me and my dad, I did laundry, got my parents situated and got my dad ready for bed. The problem as I see it is there is no rest or down time to be had for me, as the routine starts again tomorrow morning bright and early. As my dad's wakes up and wants immediate attention, not to mention that his best hours are probably 8am to noon. 

Wednesday, December 8, 2021

Wednesday, December 8, 2021 

Today's picture was taken on December 24, 2008. Mattie received this beautiful Super Mattie quilt from a colleague of mine. Ironically I had no idea she was a quilter until she sent us the quilt. Mattie posed in front of it. Though he was smiling, it actually wasn't a happy time for us. Mattie was dealing with chronic and intense pain, trauma, and depression. I understand why hospitals send people home for the holidays, but in all reality home wasn't the best place for us. Instead it was isolating and overwhelming, because we had to balance all of Mattie's medical needs ourselves. 

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

• Number of people diagnosed with the virus: 49,498,936
• Number of people who died from the virus: 792,883

I was able to join my parents for breakfast today which I wasn't expecting. I thought I would be at the house with the movers again today. Thankfully they completely packed the house up yesterday. 

We are pictured with Tony. Tony is an outstanding Marriott employees. He has been at this hotel for 21 years. About 3 or 4 years ago, my parents stayed at this hotel for several months, while their house rental was being assessed and repaired from flood damage. During that hotel stay they met Tony. Tony provided excellent service daily to my parents. Unfortunately my dad doesn't remember Tony at all!

This is the other caregiver, Zhaine, who provided outstanding service to my dad. She really bonded with him, has positive energy, and motivates him. So today was a bittersweet day, as he had to say good-bye to her. Naturally I am sure my dad is worried who will care for him now!

All I know is am exhausted. If I stop moving, I want to sleep. I can hardly keep my eyes open. Tomorrow we have to leave the hotel at 4:45am in order to get to LAX in time for an 8:15am flight. I know that sounds ridiculous, but not for the LA airport, which is always terribly congested at all hours. I have to factor getting my dad, up, dressed, packed and downstairs. Therefore I have no choice but to get up at 2am in order for me to get myself ready and get everything done. Sometimes I wonder where I find physical resources to get stuff done. I haven't found the answer yet. 

Meanwhile back in Virginia, Long Fence came to replace the broken fence and to correct property lines as part of the old fence was on our neighbor's property. 

Peter sent me this photo! Do you see the hawk on our outdoor fireplace? The next time I write, I will be in Virginia. I can't grasp the concept that my time in LA is over, that 22 days have passed, and now it is time for all of us to move East. 

Tuesday, December 7, 2021

Tuesday, December 7, 2021 -- Mattie died 636 weeks ago today.

Tonight's picture was taken on December 21, 2008. That day we drove down to the Washington Mall, got out and wheeled Mattie to see the Nation's Christmas tree, the state trees, and the wonderful holiday trains. This was a family tradition we used to do together, and as you can see Mattie was bundled up but also did not want to take a photo. Who could blame him. Nonetheless, I am happy we took him and did capture this moment in time. 

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

• Number of people diagnosed with the virus: 49,380,791
• Number of people who died from the virus: 791,514

Being away from the house last night and staying at the hotel was thrilling. I got a reprise from boxes, packing, and nonstop chores. I am working so hard that I have carpal tunnel in both of my hands. This started with my own move and has gotten worse in Los Angeles. I got up at 5:45am, so that I could get to the house by 7:30am to meet the mover. 

Today was a night and day difference from yesterday. Apparently my screaming accomplished something. I met Bill at 7:30am, he is the driver of the actual moving truck and will be hauling our items across the country. Bill is a New Yorker and we grew up not far from each other. He has been doing this job for 33 years and is very knowledgeable. He wanted to do a walk through of the house today. When we did, he could clearly see that yesterday's packers did little to nothing. That most of the packing was done by me. Turns out I packed over 50 boxes and bins. Which truly made their packing today much easier. 

After I met with Bill, Carlos showed up. He is the assistant general manager of the moving company. He apologized for yesterday. I explained how rude the relocation consultant was to me and instead of listening to my concerns, only proceeded to tell me I was rude and that he never interacted with a client like me in his 13 years. I told him I was surprised given the way he was treating me, I would expect he has had MANY unhappy customers. 

All I know is 8 people showed up at the house today. Three experienced packers and five movers. All 8 were outstanding. By 3pm, they had the rest of the house packed and loaded onto trucks. Because of the narrow nature of my parent's driveway, they couldn't bring a big moving truck to the house. So instead they rented a Uhaul van, loaded it, and then shuttled the items to an off site location where the moving truck was. Truly they were impressive and each and every person was kind, professional, and restored my confidence in humanity. After yesterday, I really wasn't sure anymore. 

The movers were dying of heat within the house. Fortunately it was a cool day in Los Angeles. We opened every window and door in the house and that helped dramatically. As they emptied rooms, I cleaned out each room of dust and debris. I was the clean up crew. Which was fine with me because I don't like sitting still when I know there is work to be done. Given how outstanding they were today, I tipped each and every one of them. 

After dumping trash and closing up the house, I went back to the hotel. I was brilliant to have my dad's caregiver come to the hotel today and tomorrow. She really helped me, because I can't be in two places at once. I took my parents out to an early dinner. When I was driving back to the hotel, my dad asked me where we were going? He was confused and thought we were going back to their house. When I said we were going to the hotel, he seemed surprised and I asked if he remembered staying at the hotel last night. He did not! Nor could he remember what he had for breakfast this morning. There is a hotel employee that my parent's know very well. They know him because three years ago, they had to stay at the hotel for many months because of a flood in their house. So they got to know Tony. When my parents saw Tony today, my dad did not remember him at all. NOT AT ALL. This is a person who he saw daily for quite some time and took care of my parents in the hotel's restaurant! It is abundantly clear that my dad's memory has declined significantly over these last 7 months, and my mom is depleted physically and emotionally. Seems to me I got here before things got even worse. 

Monday, December 6, 2021

Monday, December 6, 2021 

Tonight's picture was taken in December of 2008. Mattie was home recovering from his second surgery. He was trying to re-learn to walk and moved very gingerly. Mattie was afraid of falling or injuring his arms and leg which were recovering from surgery. In all reality Mattie was very courageous and I really did admire his spirit for life, living, and for exploring the world around him.

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

• Number of people diagnosed with the virus: 49,278,242
• Number of people who died from the virus: 789,742

Just when I think it can't get worse, today topped the cake. My mom's alarm went off at 4:45am today. It jolted me awake, as even though my parents are in the room next door, I can hear her alarm. My joy of the day is taking a hot shower to wake up. While showering this morning, I found that the water wasn't going down the drain. The shower looked like a bathtub, and naturally I had to take a quicker shower because I was afraid the water was going to spill all over the floor. This water backing up followed me to the kitchen. In fact the kitchen drains were spitting up water like a fountain. All I could think was..... what a way to say good-bye to this house!

In addition to dealing with water issues, I stripped the bed I was staying in and started a load of laundry. The packers arrived at 9am. Unfortunately when they arrived, there were only two people. TWO people for a large house filled with items. This wouldn't be a problem if they had a week to pack, but literally today was supposed to be the packing day and tomorrow the truck was supposed to be loaded on Tuesday and Wednesday. Keep in mind we are flying out of here on Thursday morning. 

I questioned why we were assigned only two packers! So I called our moving consultant, Chris, who drew up our contract. In my opinion he is ticky! I felt this way about him when I called him from Virginia. Before I came to LA, I checked in with Chris about the move. He was irritated with me and said I should go back to the contract, it is all in writing. Franky I would never work with him, but my dad likes him because Chris oversaw two of their previous moves. Keep in mind that their last two moves, I packed everything and moved it myself, and the movers only managed the furniture. Now my parents are moving across the country and they have many things, including breakables. I have been advised that the company won't cover things that break in transportation, if I pack them. So naturally I am not packing breakables. 

With all that said, I packed up about 3/4 of their home. Literally all drawers and closets are emptied. I couldn't have made it easier for the movers. But even with all the work I did, I know there is still more to do and it requires many hands. I could see the writing on the wall, and two packers today wasn't going to cut it. 

So I confronted Chris on the phone. I assure you it did not go well. He told me I was rude and he has never met a person like me in his 13 years of work. Really? Given his poor estimation of the work load, I am surprised more customers haven't chewed him out. We had two awful conversations with each other throughout the day. 

Ironically the two men packing us up, Daniel and Troy, voiced the same concerns as me. They felt we needed more people on-site packing. Honestly it did not take a rocket scientist to figure this out. Keep in mind that I packed about 40 boxes and I was told today that we will have a total of about 150 boxes. LOVELY! Those of you who don't know this, I HATE, HATE, HATE boxes. They upset me and make me anxious to see piles of things all around me. Perhaps it reminds me of the chaos Peter and I lived through when Mattie was sick. 

In the midst of dealing with packers, we had my dad's caregiver with us, and their friends who came over to pick up their washer and dryer. As I did not want the machines. Moving a washer and dryer is a nightmare. We also gave my parent's caregiver their TV, so I helped her carry that out. By 3pm, I could see my parents fading, so I had the packers stop for the day. 

After I took them out to eat, we checked into the hotel at around 5:30pm. I unloaded the very full car of luggage onto a luggage cart. While wheeling that thing, I ran over my toes. Seems fitting. I got my parents in their room, unpacked and settled them in. My mom then asked me... where is my woolite bottle? She likes this particular bottle that she got years ago in Nevada. Well this morning I asked her if I could throw things out on her bathroom counter. She said yes, so I threw out the bottle. She was besides herself tonight, so I literally got back into the car and drove back to the house. It was dark out, but I got out of the car and rummaged through the garbage cans until I found all the items she wanted. As I was doing this, I said to myself.....  'you are nuts for doing this.' 

Meanwhile, I connected tonight with the lead mover, Bill, who is coming to their house at 7:30am on Tuesday. He says he has been doing this for 33 years, and when I told him today did not go well, he wanted to learn more. When I told him the problem which I wrote about above, he agreed with me. Either we needed more packers today or these two should have started on Saturday! 

I am signing off, as I have to get up even earlier tomorrow, in order to leave the hotel by 7am. I can only hope that tomorrow goes better. My screaming generated 5-7 people coming to the house tomorrow. Finally! This should have happened today, without me having to expend more energy, energy which I don't have. 

Sunday, December 5, 2021

Sunday, December 5, 2021 

Tonight's picture was taken on December 21, 2008. That day a former graduate student of mine, Carrie, came over to visit with her wonderful poodle, Jax. Mattie was having a race with Jax. He wanted to know which one of them could move faster.... Mattie in his wheelchair with Peter driving, or Jax running.  As you can see Jax made sure Mattie won! When I look at this photo, I of course miss Mattie, but I also miss my commons area in DC. Sure I have a much bigger property now, but this commons area in Washington, DC holds memories. Memories that do travel with me, but it's not the same as being there. 

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

• Number of people diagnosed with the virus: 49,085,361
• Number of people who died from the virus: 788,363

I feel like a chicken running around without my head. I am not sure what I am doing first. Caregiving, managing caregivers, dealing with administrative issues, or packing. No words can describe my day, and it is challenging managing this alone. Especially since I just finished a big move out of Washington, DC in August. Back to back moving, house renovations, and now this have worn me down. But there is no time to stop, and there won't be any time in the foreseeable future. Like when I was caring for Mattie in the hospital, the body and mind in a way go in over drive, and it is amazing when pushed what you can accomplish. But I do know this has long term consequences, as I found out after Mattie died. since now I have a medical specialist for practically every problem under the sun. 

While my dad's caregiver was here, I packed up more rooms. My goal was to clean out and pack every drawer and closet in the house. Amazingly I can say I did this. Keep in mind that the house my parents are renting is 3,600 square feet. So I am not packing up a small house. I describe this as trying to scoop up the ocean. Just when I think I have made progress, I turn around and see so much more to do. 

Though I am very busy, I am not blind to the fact that I too am saying good-bye to California. I won't be coming back here any time soon, and yet this area also holds a piece of my history. As I went to high school here. This is just yet another loss in my life. 

Our family friends, Phyllis and John took us out to lunch today, to the famous Smoke House located in Burbank, CA. This restaurant is iconic and has been around since 1946. We literally can go to two restaurants with my dad. For two reasons, he needs to sit close to a bathroom, and we need a bathroom that has a private room so I can go in and assist him. My dad refuses to go into the ladies room with me so I can help him, so we really are limited in what and where we can go. 

The restaurant has a photographer who came around to snap photos. Typically we say no, but today was a special day to celebrate Phyllis' birthday and a chance to say good-bye to friends. It was very touching that our friends wanted to take us out. 

I have known John since I was 14 years old. He is practically part of our family, as he would join us every Friday night when I was in high school to go out for pizza. These are friends we share history with and aren't replaceable. So happy we captured this moment in time. 

The movers come tomorrow morning at 8am to begin packing the breakables in our home. Tonight I am packing up luggage, so that we can stay at a hotel for the next three nights. I figured it made no sense with all this chaos to stay in the house. So I am headed to pack my dad's luggage as he can no longer mentally do this, much less remember that tomorrow we are going to stay at a hotel.