Saturday, January 1, 2022

Saturday, January 1, 2022

Tonight's picture was taken in December of 2008, our last Christmas with Mattie. It was a very hard holiday  being home, away from our support system in the hospital. Mattie was miserable, dealing with pain, and battling depression, anxiety, and medical trauma. It truly was beyond overwhelming for Peter and me. Much too hard to even describe, as we were living minute by minute on the edge. For just a short moment in time that day, we were able to play around with Mattie and get him to smile. But the good humor and lightness you see in this photo were short lived. 

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

• Number of people diagnosed with the virus: 54,859,966
• Number of people who died from the virus: 825,816

After I got my dad up, washed, dressed, had breakfast and did his cognitive and physical exercises, I had him pose by the Christmas tree. I then sent this photo to his two caregivers in California. They worked with my parents for two years, and in a way become an important part of our family. 

Peter and I spent about five hours today dismantling Christmas all over the house. Including taking apart the Christmas tree. Now every ornament is safely away. I give myself credit because for over ten years our items were packed up and stored in our townhouse closets. This year we unearthed them and to my surprise nothing was broken. To me that is remarkable! 

But given that we haven't decorated since 2007, I had forgotten how horrible Christmas clean up is! There were pine needles everywhere and somehow putting stuff away was far more difficult that setting up and decorating. 

Since Peter will be traveling for the next two weeks, I knew we had to address this today because there is no way I would want to tackle this alone and balance my daily routine. I would say that my daily routine is challenging. Not so much because of any one task. The stressful part for me is that my parents do not have a network of friends here, they do not have a routine, and they know nothing that is around them. Therefore, it isn't like I can do something and they will have something else to occupy them. I am it and that alone is daunting. 

Given my dad's existence, he has little to no energy, therefore doing anything with him is limited. He would much prefer NOT moving all day long and sleeping, if we let him. Which we do not do! Even if my mom would want to go out and do something, she really can't. Because my parents have a togetherness philosophy, in which everything is done together. My dad doesn't like my mom leaving the house without him and he certainly doesn't want her driving. I could go on, but negotiating all of this is difficult and despite my best efforts so far, I haven't found much time to do any work much less anything for myself. 

Friday, December 31, 2021

Friday, December 31, 2021

Tonight's picture was taken in December of 2007. Mattie was five years old and looked like the picture of health. He was in his cute Christmas sweater and posing for a photo that was featured on the front of our holiday card that year. I just loved Mattie's antlers, Christmas train, and smile. He was the spitting image of the joy of the Christmas season. 

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

• Number of people diagnosed with the virus: 54,547,092
• Number of people who died from the virus: 825,394

Outside by our garage this morning, I found a gift box. Inside of it was this beautiful azalea. It is a gift from the realtor who helped us find our house. She wanted to give us a gift for our first holiday within the house. I love love love plants, so my hope is I can keep it alive to plant outside in the spring. 

I am happy to report that the doxycycline is making a big difference for me. I lost the horrible cough and the sinus pressure. So I feel like I am on the road to recovery, which is important because there is honestly no rest in our home. 

It is hard to describe what each day looks like, but there are times I feel confined, with a complete loss of freedom. I have about 70 acknowledgment letters to write for the Foundation's annual drive, and to date, I have done 11. I am trying to find time to carve out to devote to things I need to do, but it just doesn't happen. Which can leave me frustrated to feeling hopeless. On a positive note, the Foundation brought in over $45,000 this fall (which includes the annual drive). It has been our best fundraising fall season to date. 

I was happy my mom made some phone calls this morning, but what Peter and I have quickly learned in this house is that sound carries. There is NO privacy and no place one can find that is uninterrupted by sound and noise. Prior to Mattie getting cancer, sound did not bother me at all. I could work and operate under any condition. After Mattie died, my ability to concentrate has permanently changed. If I do not have silence, I can't think straight. So my current living conditions do agitate me and it is my hope that I find a way to compensate for this over time, but as Peter knows at the moment I just walk around the house saying..... I am going to blow!

Thursday, December 30, 2021

Thursday, December 30, 2021 

Tonight's picture was taken in December of 2006. Mattie was four years old and by that time he totally understood the notion of Christmas, the importance of sitting still for a photo, and the sheer joy of decorating and celebrating the holidays. As you can see, Mattie was wearing a Christmas sweater for our family holiday card and he wanted to feature his Santa train in the photo. This train was brought out of storage this year, and just like Mattie used to do, we set it up around our tree. 

Today's Coronavirus update from Johns Hopkins:

• Number of people diagnosed with the virus: 54,285,594
• Number of people who died from the virus: 824,276

We received a lovely donation yesterday from a family I do not know! So I wrote to them asking them how they learned and decided to donate to Mattie Miracle. Her answer was her family wanted their children to give a portion of their allowance to a local charity. They went on "great nonprofits" together and did a search. From there, they found Mattie Miracle, they liked what they read, and contributed. Nonetheless, hearing that made my day. 

My parents had a visit from an in-home physical therapist and occupational therapist today. Both professionals did an evaluation on my dad and the PT did an evaluation on my mom. I learned from these ladies that there are TWO ways to bill Medicare for these professional services. One is through Medicare Part A (in-patient care), and there is a 60 day limit of service provided (therapy once a week for four weeks and then therapy every other week for the second month). The other is through Medicare Part B (out-patient care). Apparently one can get more long term therapy through this option. So once we exhaust the 60 days, I will be looking into Fox Rehab. 

Here is info on Fox Rehab, because I think every caregiver should know about this option......................

From the start of his career Dr. Tim Fox connected with older adult patients. Early on in his work, he noted flaws in the programs serving this group and set out to change them. After tirelessly reading through Medicare’s regulations he realized he could provide a new and innovative model of care. One using Medicare Part B to cover geriatric therapy at home. With a laptop and this bold idea, Dr. Fox set up shop in his basement and went knocking on physicians’ doors. Physicians easily saw the benefit to their patients. It was 1998, and FOX Rehabilitation was off and running. However, the treatment model wasn’t all that was extraordinary. Dr. Fox orchestrated a culture where the staff defines the standards. FOX is founded on a belief that great clinicians will do great work if you remove the handcuffs of bureaucracy. This tenet has been proven true beyond all imagination. Call FOX today for an in-home evaluation 1.866.227.8766.

These two women spent about two hours with us and they put my dad through his paces. They could clearly see that my mom and dad have VERY different issues. My mom just needs therapy to help with posture, as her stance and gait have been dramatically impacted from years of my dad holding onto her arm for balance. I have noticed a significant decline in my dad, from when I saw him in April of 2021. He tires very easily and without our stimulation would sleep the day away. He needs significant help with washing, dressing, and toileting and I think the therapists were impressed with how well I have it together. Specifically I was showing his occupational therapist the workbooks I use with my dad every morning for cognitive exercise. She was so impressed that she took photos of the books. 

The occupational therapist gave my dad a cognitive evaluation today by using MoCA. Here's the irony in this, if you just looked at how he answered the questions, you would think he has NO memory impairment at all. As he was able to count backwards from 100 by 7s (100, 93, 86, 79...) he knew it was winter, the month of December, the year, that we are in the USA, our house is in Oakton, he was also able to draw a clock face, and memorize two out of three words (apple, penny, table). Now he maybe able to answer these questions, but if you ask him what he did five minutes ago, what movie we watched, what we just ate, he has NO IDEA. To me this is what is important and if you can't remember what just happened, it impacts your ability to communicate, to be involved in conversation, to read a book or newspaper, and to watch a TV show. Unfortunately I have learned that my dad is not only struggling with short term memory, he also has issues with long term memory too!

Meanwhile, today I started Doxycycline Hyclate, thanks to my former physician. I have decided to return to her practice because though she doesn't offer concierge medical care, we have a 20 year history together that is worth its weight in gold! Even with one dosage on board, I can begin to ear again out of my ears, to feel the pressure in my sinuses subside, and I am not coughing any more! Amazing what happens when a physician LISTENS to a patient!

Wednesday, December 29, 2021

Wednesday, December 29, 2021

Tonight's picture was taken in December of 2005. Mattie was three years old and that day Peter and I took him to the Clyde's in Rockville. We had Mattie sit right by his favorite place, the pond. You may not be able to tell, but the pond was behind him, and Mattie loved all the fish and frogs that hung out there. In any case, this is a priceless picture to me, because Mattie was happy, healthy, and enjoying his outing with us. 

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

• Number of people diagnosed with the virus: 53,617,030
• Number of people who died from the virus: 822,676

I have been ill since Christmas. I have dealt with everything from a fever of 100.7, a terrible post nasal drip, coughing, aches, chills, and terrible head pain. Of course in the era of COVID, one may jump to the conclusion that I have the virus. The only thing is I KNOW my OWN body! I get these symptoms twice a year and when I do I need antibiotics, because it is a sinus infection. My symptoms now are no different than they usually are. The only difference now is I have a new doctor. 

Given that I am managing my parents care, I felt that I needed to transfer to concierge medical care for myself, because I wanted access to a doctor all the time. To have medical care on my schedule not a doctor's! It truly sounded good in theory, but it did not play out well. 

On Monday, I called my new doctor. Instead of triaging me over the phone, he had me come into the office. Instead of listening to me and my history, he proceeded to tell me I most likely had COVID. I truly did not think so, but given that I want to be responsible, I complied with the test. Of course he was little to no help and could care less that I was balancing the care of two 86 year olds! If that wasn't bad enough, he told me I was doing everything wrong and told me to stop taking Sudafed and other drying agents. As he said that was making my sinus issues worse. Honestly!!! I guess instead it is better to just drown in fluid!

Today I called the doctor's office for the COVID results. His assistant told me that I most likely wouldn't get results until Monday, January 3! Ridiculous beyond belief. Needless to say, I got a call tonight that my results are NEGATIVE. Which is what I told him on Monday. I did not need the swab test to tell me what I already knew. 

I STRONGLY dislike medical professionals who feel they know me better than I know myself. When you don't listen to me, that is a BIG RED FLAG. Now as a patient, I have the power to walk away and tonight, I wrote to my doctor of 20+ years and told her I am returning to her practice and asked for her advice now about my current health issue. 

I also have to laugh, when I saw this new doctor on Monday, he reacted to me like this was the VERY first time he has seen me. Mind you I went to his office to meet him in the beginning of November, then I took my parents to meet him last week, and therefore this was my third visit in a month's time. Apparently I AM NOT memorable! Interesting. In any case, the doctor asked if I am under stress! REALLY????? I literally answered him.... you mean other than packing up my parent's house, moving them cross country and in with me, and caregiving? It was a stupid question and it showed me that he neither listens nor observes the patients and families that come before him in his office. 

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.