Tuesday, December 28, 2021

Tuesday, December 28, 2021 -- Mattie died 639 weeks ago today. 

Tonight's picture was taken in December of 2004. It was featured on the cover of our family holiday card. Mattie was two and half years old and by that point could understand the request to sit still to capture a photo. It was a holiday tradition that Mattie would get dressed up in a Christmas sweater and we would take photos of him. I haven't decorated since 2007, but when I look at our current Christmas tree and compare it to the one in this photo, I see all the same ornaments. It is amazing how I have preserved them over all these years in boxes. 

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

• Number of people diagnosed with the virus: 53,093,904
• Number of people who died from the virus: 820,419

I can't say I accomplished much today, as I am still feeling under the weather. I feel like I am drowning in sinus fluid! I got my dad washed, dressed, and did all his exercises. I even walked Sunny. But after that I felt like I ran a marathon and have been taking it low key. That will be my new mantra until I am feeling more energetic and like myself. Typically I am like the energizer bunny, so when I am not feeling well, my lack of activity is noticeable by everyone. 

What feels like overnight, I have become a full-time family caregiver. It isn't a role that is actually new to me, but I haven't served this role for years. Yet I know that caregiving for someone with dementia is associated with higher levels of distress and depression than caring for someone who doesn’t have dementia. 

When I wonder why I feel so depleted, I have to give myself a reality check. I moved myself in August (from Washington DC, where we lived for 27 years to Oakton, VA), then dealt with home renovations, packed my parents up in December and moved them in with us. No breaks in between and during all of this, I am caregiving for my dad. 

Research indicates that assuming a caregiving role can be stressful and burdensome. Caregiving has all the features of a chronic stress experience: It creates physical and psychological strain over extended periods of time, is accompanied by high levels of unpredictability and uncontrollability, has the capacity to create secondary stress in multiple life domains such as work and family relationships, and frequently requires high levels of vigilance. Caregiving fits the formula for chronic stress so well that it is used as a model for studying the health effects of chronic stress.

Monday, December 27, 2021

Monday, December 27, 2021

Tonight's picture was taken in December of 2003. Mattie was a year and a half old and to get a photo for the front of our family Christmas card, we dressed Mattie up in a Christmas sweater and took him to Home Depot. Mattie liked and tolerated only two stores.... Target and Home Depot. I figured if we put him in a shopping cart and had him look at the holiday lights and plants in the store that this would distract him long enough so we could capture him in a photo. This was the photo on the front of our 2003 holiday card. 

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

• Number of people diagnosed with the virus: 52,593,614
• Number of people who died from the virus: 817,726

This year I decided to change my primary care physician. Not because I did not like my physician I had been seeing for 20+ years, but because I wanted access to a concierge physician. Someone who I could contact 7 days a week, 24 hours a day. I figured this would be helpful given that my parents are now living with us. I wanted the freedom and flexibility to contact a doctor on my terms rather than on theirs. Honestly it sounds good in theory, and probably some offices operate a concierge service in a more appealing and user friendly manner than the one we selected. 

The concierge practice I selected is with a physician who is a known quantity to me. In fact, he is the physician who started the primary care practice I have been going to for decades in Arlington, VA. So I know this physician and his reputation. However, for me having a relationship with a physician is crucial. We have to be able to understand each other and have similar communication styles. My former physician is very type A, not unlike me. She dots all her i's and crosses all her t's! I feel that when we are talking about my health, she is thorough and pro-active. My new physician is an engineer by training before becoming a medical doctor. His ability to converse and process information are slower and he has the need to give lectures and educate about esoteric information. I suppose that is fine on a good day, definitely NOT good on a bad day. Since November, this doctor has seen me three times. Yet each time I see him, it feels like this is his first time interacting with me. THIS DOESN'T EARN HIM ANY VICKI POINTS! I make a mental note of this because medicine has to have a human connection with me to be affective. 

Any case, this morning I called the doctor's cell number to report my sinus symptoms and to get advice. Instead of working with me by phone, he had me come in. Thankfully I had just finished helping my dad shower and dress. I wasn't happy that he demanded I come in to be seen. After all I picked this service so that I would have more attention and flexibility in how my care is delivered. 

I did go to the office and his recommendations were borderline nuts..... he wants me to take multiple showers and breathe in the steam, to try not to cough (like one can control this?!), and then what sent me over the edge was he took out paper and a pen and started to draw for me a picture of my sinuses! Again, I am all for education, but not when my head is filled with fluid and feeling like it could burst. I am signing off to rest and realize I have to take better care of myself in order to be able to continue serving my important caregiving role. 

Sunday, December 26, 2021

Sunday, December 26, 2021

Tonight's picture was taken in the beginning of December (2002), during our first snowfall. That year I wanted our holiday card to be special..... as this was our first Christmas with Mattie. I literally dressed him in a Santa suit and brought him out onto our deck with snow in the background. We took a whole series of photos that day, but this was the one which made it onto our card!

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

• Number of people diagnosed with the virus: 52,176,102
• Number of people who died from the virus: 816,554

On Christmas, Charlotte's (our five year old god daughter) parents snapped a photo of us by the Christmas tree. How do I feel about the fact that Charlotte is close to the age when Mattie was diagnosed with cancer? I am certainly aware of it. Perhaps because of the gender difference I do not get emotionally upset around Charlotte. She instead brought life to our holiday table and it is fun to see the world through the eyes of a five year old.  

I forgot to post this yesterday, but this was our Christmas buffet...

organic turkey

homemade stuffing 

sweet potato souffle

cranberry sauce

carrots

string beans

and a coconut layer cake for dessert

My friend, Ilona, made me a Mattie Miracle ornament to hang on my tree. Ironically I distributed these ornaments to my volunteers during the Foundation's tenth anniversary (2019), but did not keep an ornament for myself. Most likely because back then I did not decorate for Christmas. So I am honored to have this orange ornament near Mattie's photo on our tree. 

Before I left California one of my dad's caregivers gave me a house warming gift. A furry type rug. I placed that rug near a window and sure enough Indie found it!

While grocery shopping this week, I came across red and white tulips. Typically I only decorate with these flowers in the spring, but something about them reminded me of a candy cane! So they became my floral display in our front hallway for Christmas. 

Despite struggling with a sinus infection (like an anniversary I get one every December or January, so I know the symptoms well), I am still working, helping my mom unpack and doing tasks and chores. But I admit I am dragging and I also understand that if I stop functioning the whole process in my house would come to a screeching halt. So I do get my reality and I am focused on slowing down in order to recover. 

Saturday, December 25, 2021

Saturday, December 25, 2021

Tonight's picture was taken in December of 2008. Mattie was in the hospital and a friend brought him a glazed Dunkin Donut. Mattie went through a donut phase during treatment and thankfully we had such an amazing support network that they practically brought Mattie a donut daily. My joke back then was "one donut a day and everything will be okay!" Also friends brought Mattie a couple of Christmas stockings. Mattie decided to wear them instead as well as decorated his wheelchair with Santas! 

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

• Number of people diagnosed with the virus: 52,092,894
• Number of people who died from the virus: 816,463

Today was a total blur! I got up at 7am and was working the entire day. My morning routine is consistent, I take a shower, get myself dressed and together, I make breakfast for everyone, and then go upstairs to get my dad out of bed, washed, and dressed. 

In addition to my usual routine, I was overseeing a dinner for ten people today. Thankfully I had Peter's help, but I am tired and can feel a sinus infection coming on. I typically get one every late December, early January and then one again in the summer. I am like clock work. So I am dragging. 

Before our company came at 1pm, I walked Sunny for an hour. Though this is another task, it is something I like doing. It gets me outside, bonding with Sunny, and not caregiving for an hour. So to me it is respite. I have working so hard on this house since June and I am still at it. It is a full time job!

Pictured in the photo above are (going counter clockwise): 

• Charlotte (age 5) - our God daughter
• Cesar (Charlotte's dad)
• Gladys (Charlotte's maternal grandma)
• My mom
• Koseth (Charlotte's mom)
• Me
• My dad
• Ilona (my friend who also lost her only child to cancer)
• Attila (Ilona's husband and our friend)
• and Peter is missing

Friday, December 24, 2021

Friday, December 24, 2021

Tonight's picture was taken on December 24, 2008. That day our friend Ed came over dressed as Santa Claus. He delivered gifts to Mattie and since Mattie did not know Ed, he truly thought this was truly a visit from Santa. I remember this moment in time like it were yesterday and Ed gave us memories from that day that will last forever. Unfortunately both Mattie and Ed died from cancer. 

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

• Number of people diagnosed with the virus: 51,927,088
• Number of people who died from the virus: 816,330

We had a visit from my friend Ann and her aunt Helen today. They brought us a whole box full of homemade cookies and breads, and gifts. Their visit perked us up and lightened the morning. After their visit, our doorbell rang. It was our neighbor Judi. She came to deliver us a box of See's candy. Which is a California based company, and one of my favorites. Judi came in and sat with us for about 90 minutes and it truly added some holiday cheer and broke up the usual routine for me. 

To my surprise, we received two gifts from FH Furr. You maybe asking who is that? FH Furr is the company who provides us with electrical, plumbing, and HVAC service. Given the immense issues we have had with the house, FH Furr has practically lived at our house for MONTHS. Their CEO, Jesse Furr sent us two gifts today. One could say..... well you spent enough money with them, so these gifts shouldn't be a surprise. But I don't take that attitude. Instead, I look at these gifts as an indication of the type of company that it is, which is one that values its customers and cares about the services they deliver. I am thrilled we are connected with FH Furr and I am grateful for their in-kind contributions to Mattie Miracle as well!

Inside the box are forever roses, meaning made of silk.

They also sent us a tower of chocolate truffles! Being a big chocolate fan, this tower makes me smile. I plan on serving it to our Christmas guests tomorrow. 

In addition to my usual routine and tasks, I have been cooking all week for Christmas. I had to take it day by day, otherwise, there would be NO WAY I could do this all in one day. Peter and I made a coconut layer cake together today for Christmas. Of course in addition to Christmas dinner, there is Christmas Eve dinner to make. I feel like I haven't left the kitchen all day. I need an elf or two to be shipped directly to my doorstep. 

Thursday, December 23, 2021

Thursday, December 23, 2021

Tonight's picture was taken in December of 2008. Friends brought Mattie these cute hats, headbands, and Rudolph noses! Mattie was going through a very difficult time and it was heartbreaking for Peter and I to see Mattie dealing with intense pain, depression and anxiety. Peter tried to lighten the mood by acting goofy with Mattie. This did help break the cycle and improve Mattie's mood. But unfortunately no matter what we did the reprieve was always short lived. 

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

• Number of people diagnosed with the virus: 51,808,987
• Number of people who died from the virus: 815,368

We woke up at 12:30am to no power. Or I should say, Peter woke up and then alerted me. Thankfully we installed a generator over the summer and just today alone it paid off. Otherwise my parents would have been two popsicles without heat. 

It was a long day. I took my parents to meet their new medical doctor. We were at the office for literally almost two hours. Everyone was very helpful and we put an order in for in home physical therapy for both my parents and occupational therapy for my dad. 

Peter and I spent part of tonight getting our Christmas table together. We turned the table because between the china cabinet and the tree, there wasn't much room for the table. 

I haven't taken out my Christmas decorations since 2007! It is a long time, but clearly when I packed them up years ago, I did a good job. As not one thing has broken over all these years. 

Wednesday, December 22, 2021

Wednesday, December 22, 2021

Tonight's picture was taken in December of 2008. As you can see Scooby Doo came to Mattie's room to visit and bring Christmas gifts. Mattie was a HUGE Scooby fan, so despite how Mattie was feeling, he was very happy to have a Scooby visit. In turns out years after Mattie died, we met the father of the teen who played Scooby Doo for the hospital. I let the father know how much his son's visits meant to us and I thanked him for his son's service. Back then, the little things made such a difference to us and the slightest act of kindness could change the whole tone and mood in our room. 

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

• Number of people diagnosed with the virus: 51,513,208
• Number of people who died from the virus: 811,783

Today was one for the books! I got up early because I wanted to get my dad up, washed, dressed, completed with breakfast, and some of his daily exercises. I did this early because my mom wanted to go to the salon for her hair and nails. Given that it is a holiday week, I booked these appointments last week. I took my mom to my salon in Georgetown. Yes despite moving, I still commute over thirty minutes into the city for services. In any case, I have been seeing the same nail person since Mattie died in 2008. We go back a long time and her sister used to do my hair, before she retired. In any case, I figured my mom would enjoy the salon experience in Georgetown, especially since the nail area is spa like. 

I figured while my mom was getting her hair done, I would get a pedicure and manicure. I was looking forward to time NOT doing anything. Given all the moving and packing I did in Los Angeles, my nails are a mess and my fingers are all cracked. To my surprise, my mom finished her hair service early and they brought her upstairs to me, where I was right in the middle of a pedicure. Somehow there was a miscommunication and my mom thought she was getting her nails done at the same time as me. Of course this couldn't happen, as my nail person was going to to finish me, go on a thirty minute break, and then take care of my mom. Though I had mentioned this timing to my mom last week, it did not help me today. When my mom heard about the time delay, she wasn't happy. She did not want to wait and it all went downhill from there. 

Needless to say, my mom did not get her nails done and I did not have a peaceful moment. I was upset, frustrated, and once again feeling trapped. I am trapped as I can't get anything done other than tasks, cooking, and cleaning. Perhaps I will figure this out over time, but for now, it is one daunting day after the other. 

Tuesday, December 21, 2021

Tuesday, December 21, 2021 -- Mattie died 638 weeks ago today. 

Tonight's picture was taken on Christmas in 2008. We got home from the hospital on Christmas Eve, and frankly I do not know how on earth we even got Christmas presents for Mattie. Clearly we did, and you can see Peter helping Mattie to open one of his gifts. It was a very depressing holiday for us, Mattie was in intense pain, dealing with significant depression, anxiety, and traumatic stress. I remember we were walking on eggshells at home and despite how overwhelmed we were, we always worked hard on making Mattie feel safe, secure, and busy with activities and play. 

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

• Number of people diagnosed with the virus: 51,250,698
• Number of people who died from the virus: 809,714

Here I am again, sitting in front of the computer to write Mattie's blog. I can't say my day today was any different than yesterday. From the moment I wake up, I am busy doing tasks and chores. In fact, other than meals and writing this blog, I am never sitting down. By the end of the day, I am worn out. Just to start the same routine the next day. Even when Mattie was sick, my days varied more than they do now. As we were in the hospital, there were constant interruptions in our room, visitors coming in, volunteers, and guest artists working with the kids and families. Though I was caregiving then, my caregiving role now looks much different. 

When I was in graduate school, I devoted my research and dissertation to the stresses of family caregivers of older adults. After Mattie got sick, I deduced that the stresses I experienced were similar to those caregivers of older adults. Now I can safely say..... yes and no. Caregiving for a child is much different from caring for a parent, starting with the fact that a child is a child. The caregiver is the adult on duty, who sets schedule, limits, and rules. It is quite different for caring for a parent. That is only one of the difference but it is a big difference. Similarities of course are the non-stop chores, medical care management, cooking, cleaning, entertaining, and so forth. 

At the end of each day, I am worn out, and like any caregiver, I have little to no time to do anything for myself. I can't even get to Foundation work, much less return a phone call or email from a friend. It is a sad commentary and my hope is things fall into place and I learn how to juggle all of this, but for now I am overwhelmed and not having any down time I find very difficult. 

Monday, December 20, 2021

Monday, December 20, 2021

Tonight's picture was taken in December of 2008. We drove down to the National Mall so we could show Mattie the Christmas tree and state trees. It was a holiday tradition we did as a three some. Of course in years prior, we all walked to the National Mall, as it was only blocks from our home. But in 2008, walking was not an option, but we were determined to continue to do normal things. Despite the fact that our life was anything but normal. As you can see Mattie really did not want to take a family photo and hid his face, nonetheless, I am glad we captured all our moments in time. 

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

• Number of people diagnosed with the virus: 51,049,886
• Number of people who died from the virus: 807,732

I honestly do not know how I could possibly describe my day to you. All I know is I am doing non-stop chores from the moment I wake up until I go to bed. It is no wonder why I can't get to the computer much to get any of my own work accomplished. What I need to accept is this is what my life is going to look like and stop feeling guilty and strung out that I am not getting to Foundation work. In fact, I feel so frazzled, I even thought about folding up the Foundation today. However, this is something that I have built and nurtured for 12 years in Mattie's memory, and we have accomplished so much, that I can't see letting go of my 501c3 baby. 

In the midst of everything going on I have also started prepping food for Christmas because I neither have the time nor energy to cook a big meal in one day. Instead, I manage a dish a day and refrigerate it, so it can be cooked it on Christmas day. This is a whole lot easier than trying to do the impossible on the 25th! 

As for the 10 large (and I mean large and HEAVY) wardrobe boxes that we had, I advertised them on Next Door. My friend told me about this app, and it has been a God sent since we moved to this house. I can't tell you all the things I gave away to local residents for free. There were so many items in this house that I did not like or wouldn't use, but knew someone could benefit from it. On Saturday, I advertised the 10 wardrobe boxes, and as of tonight, all 10 will be gone. I have decided that I will do the same thing with our packing boxes, when I eventually get to them. Packing boxes add up in cost, and people are always moving, so I figure someone should benefit from these boxes, rather than putting them in the recycling bin. All I know is when someone takes things off my hands, it saves me MORE work and time, which I deeply appreciate!

Sunday, December 19, 2021

Sunday, December 19, 2021

Tonight's picture was taken on December 24, 2008. Mattie was going to be released that day from the hospital to go home, so he could celebrate Christmas at home. I get why hospitals push people out during the holidays, but in all reality this wasn't the best decision for us. Going home was challenging, isolating, and impossible to manage without the support of our medical team. Right before being released, Mattie's best preschool friend, Zachary, came to visit. While they were playing, two marines walked into the room to bring holiday cheer and presents. They graciously allowed us to take photos together which Mattie enjoyed because even at a young age he had great respect for people in the military.

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

• Number of people diagnosed with the virus: 50,832,991
• Number of people who died from the virus: 806,438

This morning wasn't my finest moment. I need to constantly remind myself that my dad isn't who he once was and even though I have inordinate patience, I need to tap into an even deeper reserve. As I got him up this morning to get into the shower, he said he wanted to use the bathroom first. I got him to the toilet, but what I did not realize is that walking along with us was a trail of urine (of course my mistake was I took him depends off first because I thought we were walking directly to the shower). While on the toilet, he mentioned that he saw water on the floor, but I said that couldn't be, until I looked closer. Sure enough it wasn't water but urine. Which I was stepping in and walking through. Needless to say when juggling a lot, I at times crack. I started yelling. Not at my dad, but he took it like I was yelling at him. He doesn't like any loud voices or noise now and therefore the internal message I have to remind myself is that he can't control what he does and accidents like this will happen. Just deal with it and move on. I can't prevent them and I certainly don't want him to feel bad about what happens. Though the one beautiful thing about dementia is that in a few minutes my dad forgets what just transpired. So it is like working with a clean slate, which is the only blessing, and I really mean the ONLY one, as I think dementia is another horrible disease. 

We focused on placing furniture on the first floor today. I was determined to get rid of the warehouse look! I have to take photos during the daylight hours, but this is my mom's furniture in the living room. Fortunately my mom and I have a very similar color palate and similar taste. So our furniture talks to each other. But I had to be strategic when purchasing a house, as it had to have space for my things as well as hers. 

Our piano room. Or I should say the room that features Mattie's piano, which was given to Mattie for free by a former neighbor. I will never forget Susan, she felt Mattie needed to learn an instrument. Next to the piano is a Victrola. On top of this Victrola is a marquetry box which houses Mattie's ashes. The piano room and the room pictured below are new additions to our house. The former owners built them because the wife literally wanted her own private space in the house away from her husband and children during certain parts of the day. This new addition enables us to house all our furniture. 

We did not name this room, instead when the house was sold to us it was called the Oakton Room. So the name has stuck with us. I have now removed enough furniture in it so that I am not going to have an anxiety attack. Ironically Indie and Sunny absolutely love this space. Of course you have NO IDEA what our basement looks like. It is packed to the gills with boxes and furniture we removed from the first floor. I will slowly begin working on the basement post-Christmas.