Saturday, January 8, 2022

Saturday, January 8, 2022

Tonight's picture was taken on January 13, 2009. We took Mattie on a NYC cruise passed the Statue of Liberty and a kind passenger offered to take our photo. I am so glad he did! Peter and I were very stressed out on this trip, as Mattie was going to begin an experimental treatment at a well known hospital. Before we started the treatment, we tried to do some fun activities around the city with Mattie. Getting around NYC in a wheelchair was a feat, but we made it happen. We jumped into taxis and got around and ironically Mattie loved the whole experience. Including seeing skyscrapers! 

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

• Number of people diagnosed with the virus: 59,766,491
• Number of people who died from the virus: 837,257

This morning I got myself together and was downstairs making breakfast by 8:30am. My mom came down shortly after and said that it wasn't a good morning. Apparently my dad flooded the master bathroom when flushing the toilet. I ran upstairs and picked up soaked towels, and Peter and I began to examine the toilet to see what the issue was. Needless to say, we couldn't recreate the problem, and the toilet seems fine to us. Of course after that hysteria, I had to clean the toilet and the bathroom floor. I wish I could say that is where my day ended. Forget it. From there I had to help my dad back to the toilet and then with showering, dressing, breakfast, and exercises. Apparently there was so much stress during the bathroom flooding incident that Sunny came upstairs, walked right into my parents room, and into the master bathroom. He remained with me the entire time I was cleaning and showering my dad. This is not something Sunny typically does, but Sunny understood that a crisis of some sort was going on upstairs and he wanted to be there to be supportive. He is an amazing, bright, and sensitive pooch. 

In fact, after my morning routine with my dad, I then switch gears and walk Sunny. Though Sunny has a backyard at his disposal, he really wants a walk and the time to connect with me. So I always make sure to include an hour to 90 minutes to walk with Sunny. Yes it is another task, but it is a task that gets me out of the house, getting fresh air, a change of scenery, and I view it as my mental health break from the intensity that I face daily. 

Tomorrow Peter heads to Atlanta for a week of work. Though I manage the daily routine, typically on my own, it always helps to know that he is just upstairs and could help if I need it. As I always said when caring for Mattie..... I take it one day at a time. The same applies now!

Friday, January 7, 2022

Friday, January 7, 2022

Tonight's picture was taken on January 11, 2009. We were staying at the Affinia Gardens Hotel near the hospital in NYC. I will never forget this hotel. At check in, we literally wheeled Mattie into the lobby. The hotel folks took one look at us and they immediately upgraded us to a suite. Not just any suite either, but a penthouse suite. It had two bedrooms, two baths, a kitchen and balconies. It was an extraordinary room. I will never forget their kindness, compassion, and understanding. Even Mattie was thrilled by the room, so much so that he attempted to walk around the room holding onto the walls. 

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

• Number of people diagnosed with the virus: 59,031,556
• Number of people who died from the virus: 835,815

In my email inbox today, I got a photo reminder from Shutterfly. They created a collage from our trip in January of 2020. In a way our world and our personal life were dramatically different at that point in time. We were ignorant of COVID-19 and at that point my dad was still functioning and able to travel. 

These photos were taken aboard a Princess Cruise ship. I think about this and consider myself lucky that this cruise wasn't a month later. Because we would have been quarantined aboard the ship because of the virus. Pictured with me here are Oscar the Maître D' of the ship's restaurants and our wait staff..... Dani and her assistant (whose name escapes me right now). 

These photos remind me of something I learned earlier on in my life..... that things CAN and DO get worse. Traveling with my dad back then was not easy by any stretch of the imagination, but in comparison to now, it is a night and day difference. Our lives have basically stopped for us because of caregiving. Again a role, I know all too well. It just wasn't something I was planning for, maybe because of the ordeal we went through with Mattie. It was a time in our lives that we will never forget and I am still dealing with the physical ramifications of living under that intense level of stress. Now I face another crisis, that looks quite different, but still has great stress and at the end of the day provides me with no flexibility, freedom, and independence. 

Today I had a virtual visit with my endocrinologist. She is trying to find a medication that will work for me given my very poor response to Fosamax. While talking, I explained to her that I am a full time caregiver now and have little time to get sick or deal with negative side effects of medication. My conversation, triggered her own reflections.... regarding her mother, father, and mother-in-law, all who have died, but needed great support at the end of their lives. I have found that caregiving is a role that immediately unifies people together. We just naturally empathize and have insights into the perspectives, stresses, and concerns expressed by our fellow caregivers. 

Thursday, January 6, 2022

Thursday, January 6, 2022

Tonight's picture was taken on January 13, 2009. We took Mattie to New York City to begin experimental treatment. While there, Mattie received a package in the mail. The hotel delivered it to us! It was from Mattie's child life specialist here in Washington, DC. I will NEVER forget that act of kindness, that went beyond her job description. She mailed Mattie many wonderful toys and things to keep him busy while in the hospital in NY. Look at Mattie's big smile of happiness!

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

• Number of people diagnosed with the virus: 58,272,536
• Number of people who died from the virus: 833,435

Today marks the first month that my parent's have lived with us. I went in with this eyes wide open, as I knew how it was going to be. After all, I am no stranger to their issues and needs. I have been going out to Los Angeles to help them every other month for almost two years now. Even during COVID. Of course the difference is after a month, I returned home, caught up on work, rest, and my life. Now there is NO catching up to be had. 

They say that caring for older adults with dementia is one of the hardiest things to do. I still put caring for a child with cancer at the top of the list for multiple reasons. First of which you are dealing with a full blown medical crisis, practically on a minute by minute basis, and you have to face the consequences that unfold in your child because of the treatment. Consequences which are heartbreaking. That said, caregiving is caregiving and plain and simple..... it's hard. I imagine if I did not have the Foundation, I would be less stressed out. But given the tasks I manage for both of my parents, my days are full. 

Today I decided to cook a pot of chicken soup. The weather seems to call for this and believe it or not, I am still not feeling 100%. Certainly much better since I started the antibiotics, but I continue to struggle with laryngitis. All I can say is I take it one day at a time. Which is a philosophy I used when caring for Mattie. I truly can't plan beyond a day. All I know is I am doing a lot of apologizing to people. As I am either not returning emails, or messages, and certainly am unable to leave the house and visit with friends. My day starts at 7am and I do not finish until 10:30pm. By 10:30pm, I am wiped out. When my alarm goes off in the morning, I truly want to just close my eyes and sleep several more hours, but that luxury is long gone. 

Wednesday, January 5, 2022

Wednesday, January 5, 2022

Tonight's picture was taken on January 12, 2009. We took Mattie back to New York City to begin his experimental treatment for osteosarcoma. He could not get on this trial unless he began it in New York. The hospital where Mattie was treated is NOT a favorite of mine despite its huge reputation. In so many ways it was a factory and inhumane. All treatment was performed out in the open, sometimes in hallways. The whole place made me nuts. But this particular day we actually got a treatment bay to hang out in, which was a miracle. This experimental treatment was a nightmare. Even after the first dose, Mattie got a terrible reaction that required he come back through the ER. 

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

• Number of people diagnosed with the virus: 57,528,962
• Number of people who died from the virus: 831,825

Last night before I went to sleep, I did an internet search on late stage dementia. It confirmed for me the exhaustion I am seeing in my dad, and some of the issues he is having with food texture and swallowing. It is very heart breaking to see someone you love transformed by a disease. My dad isn't my first experience with caregiving, as most of my readers know. My experiences started back when I was a teenager and my grandmother had a stroke. Then there was Mattie, my friends...... Mary, Sully, and Charley, and now my dad. Caregiving is a thankless job but it can get to you at times. 

Yesterday was one of the times it got to me. As I was frustrated by my dad's incessant questions, the repetition of questions, and of course some of the physical issues I manage for him. After reading last night, it helped me have a mindset change and to get perspective once again that..... this is not my dad. It is the disease that is impacting every aspect of his life. As a consequence of course it therefore impacts the rest of us. 

Today the physical therapist came over to start treatment with my dad and mom. She is excellent and I really loved the exercises she gave both of them. However, what I do not like is Medicare! Medicare is a riot. They will pay for six sessions of PT/OT/Speech. Not six each, SIX in TOTAL. You know darn well that these long term physical issues can't be resolved in six sessions. So what is my conclusion!??? My conclusion is the caregiver becomes the full time therapist, after observing and learning the exercises from the PT/OT/Speech therapists. This is beyond entertaining because what this tells me is Medicare has absolutely NO regard for the role of a family caregiver. The fact is the family caregiver is already doing everything! We shouldn't also have to add PT/OT/Speech to our already full day!!! HONESTLY!!!!! 

After the PT sessions, I then ran out to go grocery shopping, as we are expecting more snow. The roads in our neighborhood were finally more passable today, though still not terrific. The grocery store was a zoo and I couldn't get over seeing so many empty shelves. Most likely because of the threat of the storm and the simple fact that trucks haven't been getting through because of weather. I came home and put the groceries away and then made a snack for my parents. Then back out again to walk Sunny for an hour. This is what my days are like. One task after the other. Peter's joke tonight is that I could have been in the military, I guess because I run a tight ship here. I am all about planning, scheduling, and directing. 

Tuesday, January 4, 2021

Tuesday, January 4, 2022 -- Mattie died 640 weeks ago today. 

Tonight's picture was taken on January 6, 2009. It was the Epiphany or Three Kings Day in the Christian religion. One of the cartoons we were watching at the time, gave us a website, in order to print out a king's (wiseman) hat. Mattie liked the notion, so we printed it out for him while we were playing. I LOVE that smile. 

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

• Number of people diagnosed with the virus: 56,697,387
• Number of people who died from the virus: 829,091

If you do not live in the National Capital Region, you may not know about the I-95 shutdown. It is perhaps a first for something of this magnitude to happen. Our region received about 7 inches of snow on Monday, which is a TON for us. This caused trucks to crash and pile up on I-95. This was like a domino effect, because it caused a back up and stranded drivers for 24 hours. I can't imagine being stuck on I-95 for 24 hours unable to move or have access to heat, water, and food. Not to mention a bathroom! My thoughts go out to all these drivers and of course the emergency personnel who are actually walking on I-95 to check in on drivers and to deliver food. Amazing people!

Peter was supposed to drive to Virginia Beach today for business meetings. However, while I was taking a shower and getting dress this morning, I had the radio on. It was through the radio that I heard about the I-95 shut down, and I immediately alerted Peter. After learning more, he had to cancel his trip and alert everyone he was scheduled to meet. To learn more about the shutdown today, check out: ‘Never Seen Anything Like It': Drivers Stranded for 24 Hours on I-95 in Virginia. 

Meanwhile this is the state of roads near the Farm. I learned from our HOA president that we are indeed on the snow plowing route maintained by the city. So our HOA fees do not pay for plowing, like the former owner of our house told us. Frankly though I think we would have better luck with a private company, because the town appears too busy to get to side streets to plow. All of the side streets in our neighborhood are unacceptable in my opinion and in some cases are sheets of ice. 

Regardless of weather conditions, I walk Sunny. I am like the Post Office (though here on the Farm we haven't received mail in two days because of the street conditions!!!). So Sunny and I did our hour walk on these streets today. All I could see was fallen trees everywhere, trucks on several streets to manage the fallen trees, and in one instance Sunny slipped on black ice and literally his entire back end gave way. I had to help him up and thankfully he is physically okay. All I could think about was the fact that he just recovered from KNEE SURGERY in September! 

This Thursday will mark the first month my parents have been living in Virginia. It is an adjustment for all of us. In just this short period of time, I have seen a massive decline in my dad. Both physically and cognitively. I expected something like this to happen because of his new surroundings, but being in the middle of winter doesn't help. Because I can't get him outside to enjoy fresh air and the backyard. I am not sure that would even help, but now, he spends an inordinate amount of time sleeping in his chair in the family room. It wasn't like he did a whole lot in Los Angeles either, but for me it is hard to be confined to the same routine each and every day. In addition to the same routine, I feel like I am listening to a broken record, or my joke is I am stuck in Ground Hog's Day. Again no fault of his own, but he can ask the same thing OVER and OVER again and it requires a great deal of patience to manage his questions. 

Monday, January 3, 2022

Monday, January 3, 2022

Tonight's picture was taken on January 7, 2009. Mattie was home and that day our resident Jack Russell Terrier, JJ, came over to visit. Mattie and JJ practically grew up together and in his own way, JJ was very close to Mattie. Whenever we were home, JJ would come down our commons area to look for Mattie. JJ continued this tradition long after Mattie died. 

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

• Number of people diagnosed with the virus: 55,530,407
• Number of people who died from the virus: 826,678

We woke up to a winter wonderland today! Fortunately I did go grocery shopping yesterday. Because given our streets, there would be NO way I could get in the car and drive. This is NOT Washington, DC. In DC, we lived right near the State Department, not only were streets plowed immediately we never lost power in 27 years! I mean NEVER. Whereas today, on the Farm we lost power for an hour. So far our generator has been used 7 times, and we have only lived in the house since August. 

Look at this beautiful sight outside our family room. Cardinals dotted the Crape Myrtle. 

A backyard all in white!

We have about six bird feeders and they were VERY VERY busy today. 

Around 11:30am, I took Sunny out for a walk. He did not mind the cold or the snow in the least. He loved it. We walked for about an hour. I felt like I got a work out trudging through the snow, which was up over my ankles. 

The beauty of our streets. I learned today from a neighbor that our streets don't get plowed. The former owner of our house said that our home owner's fees paid for plowing. That was a lie! So digging out will be complicated. 

After our walk, we came home and literally everything on me got tossed into the dryer. Sunny was covered in snow and ice and I toweled him off. While working on Sunny, I thought I heard a truck driving up our driveway. When I looked outside, it was our neighbor, Dave, with his snow blower. Do you know that he dug our entire driveway out!! I still can't get over this. I told him he is my New Year's miracle. It is a blessing to have a neighbor who cares about his community and Peter and I were juggling so much inside the house, that we weren't sure where we were going to get the energy to shovel snow. Thanks to Dave, I don't have to worry about this today. 

Sunday, January 2, 2022

Sunday, January 2, 2022

Tonight's picture was taken on January 2 of 2009. It is hard to believe that this was 13 years ago. To me it feels like it was just yesterday. Mattie received this wonderful Scooby Doo balloon from a friend and as you can see Mattie was keeping it close to him. Post surgery, Mattie spent a lot of time on the floor. It was easier for him to get around and to play with things. As walking and standing were very difficult for Mattie. Back then our home was filled to capacity with every toy and Lego possible. In the background of this photo, I can see many of the structures Peter and Mattie built together. I can also see a yellow shopping bag. Mattie receive so many wonderful gifts on a daily basis, that Peter and I would save many for a "rainy" day. Meaning a day or moment Mattie was having a rough time. To break through the mood, out came a gift. I can't tell you how these gifts saved us on so many occasions. This was the one blessing we received during Mattie's diagnosis and treatment, an incredible support network who met our every need and then some. 

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

• Number of people diagnosed with the virus: 55,069,347
• Number of people who died from the virus: 826,006

To my surprise today I found a gift on my doorstep. It was left behind by my friend Ken. Ken was Margy's husband. Margy lost her battle to ovarian cancer in March of 2021. So for Margy's family it is the first holiday season without her. I remember my own first holiday without Mattie. In so many ways our society conditions us to think that the first is always the hardest. In reality, it is hard but each subsequent holiday becomes challenging, but perhaps in a different way than the first. 

Everything about a first holiday, birthday, and milestone was hard after Mattie died, but it's hard because I was so emotionally raw. The body and mind were almost programmed for a disaster and therefore the actual holiday or milestone was survivable. It was typically days after, when I let my guard down, that I fell apart. I know I have discussed all these feelings with Ken and Margy's daughter. I think they find them helpful because what I am telling them most people do not talk about. Yet it needs to be heard, otherwise, it is quite possible that the conclusion one is left with is..... something is wrong with me! 

The photos above are priceless to me. When Margy was diagnosed with cancer, I would visit her monthly at her home. I would bring lunch, cupcakes, and we would chat for about six hours. Ken typically photographed our time together. In fact, one day he surprised me with my own photographic placemat at their kitchen table. In any case, the three photos you see here were taken at Margy's house around July 4th (on the left), at Curefest on the National Mall (top right), and at my 50th birthday party (bottom right). I am so glad that Margy was well enough to come to that party.