Saturday, March 11, 2023

Saturday, March 11, 2023

Tonight's picture was taken in March of 2009. To me this was quintessential Mattie! Mattie received this knight costume from his support team. Mattie put on all the items and was hobbling around his bedroom dressed as a knight. I called him 'Sir Mattie!' I don't know if you can appreciate just how full our home was by that point in Mattie's treatment journey. There were toys and items piling up everywhere. In fact, in front of Mattie on the floor was an aero mattress. When Mattie was home between hospital admissions, this was where I slept. Mattie was connected to IVs at night and needed assistance and supervision. It was amazing what we endured, but we would do it all over again, because our goal was to save Mattie's life. 

Quote of the day: Appreciation is a wonderful thing. It makes what is excellent in others belong to us as well. ~ Voltaire

We have many stressors in our life. But one of which I hadn't been talking about was Peter's job. Peter has had quite a time of it! Peter worked for a company for 15 years, but in 2019 it was acquired. What commonly happens in such transitions, is people lose their jobs. This was a huge change in our lives right around the time of the pandemic, because that particular company was part of our lives when Mattie was diagnosed with cancer and then died. Losing this connection, was significant, because it felt like Peter wasn't just losing a job, but we were losing another link and connection to Mattie. 

So in the midst of COVID, Peter was actively looking for a job. I can assure you this was a very difficult time in our lives, and given the state of emergency we were all living under, no one was thinking about hiring. In addition to that, Peter had to learn about the art of finding a job through electronic means. Because think about it...... over 15 years ago, people found jobs through actual networking and with paper resumes. By 2019/2020, that methodology was old hat and we had to learn the new art form of finding a job. Peter got quickly up to speed about the art of showcasing one's self on Linked In. Gone are the days of recruiters working for the individual looking for a job. Recruiters are instead hired by companies to find quality job candidates. So the challenge is how do you attract a recruiter's attention on-line?! I am sure Peter could write a chapter on the science of this alone. 

In the Fall of 2020, Peter was hired into a home health/hospice company based in Tennessee. Thankfully he could work remotely and was plugging away until June of 2022. Again, a pivotal moment in our lives, when the investors of the company decided they needed to cut costs and eliminated Peter's role. With the intention of putting the company in a downhill spiral. So in two years time, Peter has been faced with the crisis of finding a job, not just once, but TWICE. 

Though I must admit, the mechanics of finding a job, weren't as daunting to us now as they were in 2019. Peter knew the process and what he had to do, but of course being without employment is very difficult financially and emotionally. We have huge expenses such as a mortgage, managing a household, caring for my parents, and the list goes on! So you can imagine the underlying stress Peter has been living under on a daily basis. 

In December of 2022, a job opportunity presented itself with a company based in Seattle, Washington. Peter has been in conversation with this company since then, had all sorts of interviews, and this week even went to Seattle to meet with key people. 

The exciting news is Peter was offered the President job of the company today. I am so proud of him for enduring this very long and difficult process. However, the company said several things to Peter that caught my attention. They feel, he has the necessary "heart" to run the company. This was stated by the Co-Founder of the company. She also said that Peter's personal experiences, on top of his extensive professional experiences, make him the ideal candidate for the job. As the company works with many patients across the United States who are on clinical trials. As I always say, Mattie was our greatest teacher in life! Congratulations Peter, I knew he could do it, and I am glad I told him to wait it out for the right job.... I had faith in him and knew in time the right opportunity would come along. 

Friday, March 10, 2023

Friday, March 10, 2023

Tonight's picture was taken in March of 2009. Mattie was in-patient at the hospital and that day he went down to the physical therapy clinic. Mattie built up this pyramid of blocks, and as you can see, he was sitting behind them,  anxiously awaiting to kick them all down. The building and kicking, were excellent activities to get him Mattie to use his arms and legs. Given that Mattie was recovering from limb salvaging surgery, his therapist had to find creative ways to get Mattie moving. Mattie loved a challenge and building, and therefore capitalizing on these strengths made his physical therapy sessions more effective. 

Quote of the day: According to the report Caregiving in the U.S. 2020: A focused look at family caregivers of adults age 50+ (conducted by the National Alliance for Caregiving and AARP), the number of individuals caring for older adults (those 50 years or older) has increased by 7.6 million caregivers since 2015.

In one of the professional association magazines I receive in the mail, I noticed an article entitled, The mental health needs of older caregivers. Naturally this caught my attention, so I decided to read it. For those of you who may not know, family caregiving isn't just something I do, it is something I also researched for my dissertation. I conducted original research with 100 caregivers in the Washington, DC area in 2003. Given that my maternal grandmother suffered a stroke when I was in college, and I observed how her devastating illness impacted her and my whole family, I entered graduate school compelled to study this phenomenon. 

While reading the article in the magazine, written by a mental health professional, I was immediately turned off. I mean way off. Mainly because she refers to those of us caregiving for aging parents as "old." I honestly couldn't get passed her terminology and therefore shut down from the whole premise of her article. When I conducted my own caregiver research, I was very sensitive to such terminology and you will never find the words elderly, senile, and other derogatory terms in my writings. 

However, what caught my attention in this article, was she cited the original study, entitled, Caregiving in the USA- 2020. This study was conducted by AARP and the National Alliance for Caregiving. I love the National Alliance for Caregiving and turned to them often as a graduate student, especially when I was looking for current studies and national data on caregiving. 

Some of the data from Caregiving in the USA study caught my attention, and I inserted a couple of the bar graphs below.

The study compares data from 2015 to 2020. What is startling is the duration of care has increased. In that 28% of family members are caregiving for someone five years or more. So the intensity of caregiving is not just a sprint, but a marathon in many cases. 

In addition there has been a 24% increase in the number of care recipients that one family member is managing. Though I may be in the minority, in that I care for two people at one time, my segment of the caregiving population is growing. 

This chart has me laughing. On average caregivers provide 22 hours of care to a loved one per week. This average for the week, equates to one day in my house. 

There appears to a rise in the number of care recipients living with their caregiver. A 32% increase since 2015. 

This chart explains the types of assistance caregivers provide on a daily basis. On average caregivers provide 1-2 forms of support that is listed here. I however, provide all of them on a daily/hourly basis. 

In addition to activities of daily living, I also provide all instrumental activity support. Everything listed on this bar graph falls into my daily/weekly list of tasks. 

When I see this actual data, it makes me pause and really reflect on why I am so tired. I try to push this reality aside (otherwise I couldn't get through the day, week, year), but these charts speak for themselves. It is very difficult caregiving for one person, but I have two and I have done this now since November of 2021, without a day off, time away, or any kind of break. It is no surprise that one loses one's self in the process, becomes isolated, and worse I have gotten used to this isolation because I know juggling any sort of social outlet would only further exhaust me.

Thursday, March 9, 2023

Thursday, March 9, 2023

Tonight's picture was taken in March of 2009. That day, Mattie received a visit from his "girlfriend," Charlotte. Mattie and Charlotte met in kindergarten and as I always said.... they brought out the best in each other. Throughout Mattie's cancer journey, Charlotte visited. Mattie wasn't always in a great mood, and could be snappy. But that did not prevent Charlotte from coming to the hospital. The hospital is a daunting place even for an adult. But for a young child, it is overwhelming and frightening. I learned a lot about friendship from observing Charlotte and Mattie. In any case, that day, Mattie's art therapist dropped off some silk screen hoops to Mattie's room. Mattie and Charlotte used markers and created all sorts of art work on these silk pieces. This particular one was designed by Mattie. It featured Charlotte front and center. Of course no Mattie creation would be complete without a sun, sky, and grass!

Quote of the day: Try to be a rainbow in someone’s cloud. ~ Maya Angelou

Peter sent me some photos from his flight to Seattle yesterday! Look at all that snow in the mountains!

Coming into Seattle. 

The last time we were in Seattle was in 2011. Peter and I met my parents there and then we boarded a cruise for Alaska. It is hard to believe this was 12 years ago. My parents were much healthier back then, and my dad was able to walk without any assistance. Honestly the sad part about caregiving for parents with dementia, is that this is how I know and experience them. The sharp, clear minded, and active individuals I may have once known, have completely drifted from my memory. 

Peter is ready for a full day of job interviews. He starts at 7:30am and goes until 6pm! We wish him luck!

I would have to say being a caregiver to parents is beyond challenging. My parents have different needs and different personalities. My dad is very needy, almost child like, but takes direction and is a happy camper. My mom on the other hand is equally needy, but doesn't like support, supervision, and resents it. My mom reminds me often that her mom, my grandmother, was the ultimate caregiver. Meaning that I am NOTHING like her! It is true my maternal grandmother was an extraordinary person. Calm, patient, loving, and very competent at providing care. My grandmother and I, have different personalities. As I am much more temperamental, feisty, and have a mind of my own. So when my mom says nasty comments to me, I don't sit back and take it. In fact, yesterday I landed up screaming yet again. She has no appreciation at all for the multiple things I juggle. Instead of acknowledging this, she piles more stuff on me. Constant demands! So I snapped. Of course when I snap, that's when I get to hear about me versus my grandmother. 

Yesterday, I took my parents out for an early dinner. Whether I am home or out to eat, it is a show. There is no eating in peace. One of them constantly needs something, and it is hysterical trying to have a conversation with Cheryl, our server. As Cheryl was catching us up on her difficult week, she highlighted that she was at a storage facility (moving some boxes into storage) with her son and ex-husband. While at the facility, they all got locked in the elevator for 30 minutes. Which of course is scary. Instead of being able to hear more about this story, my mom interrupted to say that this happened to her too. This is a typical thing with my mom. I don't know if it is a competition thing, trying to get attention, or what, but she will always bring the conversation back to herself and outdo whatever story is being told. 

For example, my mom told Cheryl that she too was once stuck in an elevator, and the only way she was able to get out, was she had to do what is depicted in this photo. She had to scale the wall and climb through the ceiling hatch. I listened to this and honestly this is the very first time I ever heard this story! I would think something this traumatic, I would have heard before at some point in my life. My mom was dead set that this happened and my dad and I were just looking at my mom. I personally concluded that this was yet another one of her delusions!

What is a delusion? A delusion is a belief that is clearly false and that indicates an abnormality in the affected person’s content of thought. The false belief is not accounted for by the person’s cultural or religious background or his or her level of intelligence. The key feature of a delusion is the degree to which the person is convinced that the belief is true. A person with a delusion will hold firmly to the belief regardless of evidence to the contrary. 

There are many explanations for why delusions occur, but for this particular circumstance, I am chalking it up to dementia. Despite the fact that my mom's brain scans are completely normal, there is something NOT normal about her behavior. So in addition to all the other tasks I manage, I also have this psychological component that makes my days endlessly exhausting. 

Wednesday, March 8, 2023

Wednesday, March 8, 2023

Tonight's picture was taken in March of 2009. Mattie was home from the hospital and as you can see, our living room floor was completely transformed. We had toys, Legos, and trains everywhere. In fact, one of my mentors gave me a box of Lionel train accessories before he died. He wanted Mattie to have them, and Mattie of course loved each and every piece. When I tell you that our home looked like a warehouse when Mattie was sick, I am not kidding. It remained like that for many years after Mattie died because I just did not have the energy and strength to manage the clean up. Nor could I emotionally handle what the clean up represented. 

Quote of the day: And it is still true, no matter how old you are, when you go out into the world it is best to hold hands and stick together. ~ Robert Fulgham

This morning was an early start for Peter, as he was in an Uber at 6:30am. He is now in Seattle, pursuing a job opportunity. Thankfully the opportunity would allow him to work virtually, because no offense to Seattle, but the weather is a nightmare. 

Though Peter left early, he was his usual thoughtful self, and set up breakfast dishes and things for me, so that when I got downstairs, I literally could hit the ground running. Which was very much appreciated. 

This is also a Peter tradition! When he goes away, he leaves me loving post-it notes. He has done this throughout our marriage. The notes are all over the kitchen. Given my daily routine, these messages really perked up my day. 

The notes even made it to the refrigerator!

Also in the pantry!

I did my usual morning routine. Got my dad to his memory care center, then came home and managed my mom. She is slowly improving, but still not well. I have no idea how she would have gotten any better without antibiotics. She is now on her second round of antibiotics and I am hoping within a few days she will be stronger. This illness has left her depleted. 

Meanwhile, I got on the phone with the pulmonologist office today because I want my dad to be a patient of this doctor too. This doctor has been a lifesaver for my mom, unlike her internist. Of course nothing is simple, I waited on the phone awhile and then once I got an appointment I had to work with the staff on getting my dad signed up under my patient portal. I manage all my parent's doctor appointments and communications. 

This afternoon, I am taking my parents out for a late lunch/early dinner. I am very tired from cooking, serving, and cleaning up three meals a day, for almost two weeks straight. That is of course on top of all the other caregiving tasks I do. But here's the kicker.... our oven is NOT working. I am glad it happened now, when I can work around it (as thankfully the range still is operational), but there is never a dull moment in this house. 

Tuesday, March 7, 2023

Tuesday, March 7, 2023 -- Mattie died 701 weeks ago today. 

Tonight's picture was taken in March of 2009. This full body scan was taken at the hospital and it shows all of Mattie's prosthetic parts. I always joked with Mattie that he was the bionic man. He thought that notion was hysterical. I tried to make Mattie understand that having these prosthetic bones made him unique and that his bones would be stronger than anyone else's! The wire you see on the left hand side of the film was an IV with contrast, which was sent through Mattie catheter (connected directly to the large vein that led to Mattie's heart), to create these images. 

Quote of the day: The good physician treats the disease; the great physician treats the patient who has the disease. ~ Sir William Osler

This morning, I woke up, not in a great mood. I was juggling a lot as always, and had to get my dad up, dressed, fed and out the door to a doctor's appointment. Given that my mom is still not feeling well, I literally couldn't wait for her to get it moving to take her along to this appointment. So I left her at home. But before I left, she wanted to know where her new antibiotics script was! That sent me right over the deep end and I started screaming. 

Last night, I reached out to my mom's pulmonologist and I told her she isn't improving. Given her long standing lung condition, he decided at 10:30pm to put her on a strong antibiotic. Which meant that some time today I had to pick up the new script. How my mom thought I could have gotten up, got myself ready, the first floor cleaned up, breakfast made, my dad up, showered, dressed, the bed made, and laundry started, and also had time to go to CVS to pick up this script is beyond my comprehension. 

Of course in the moment, I can't always think rationally and calmly. Now looking back at this, I laugh. How I thought my mom could step outside of herself for one minute to rationally think about this is funny. Both of my parents are very myopic. Their needs are the priority ALL THE TIME. There is no room for anything else. I know this, and yet there are times this dysfunction gets the best of me. Like this morning!

After my tirade, I had to get my dad in the car and drive him to the hospital. It is about a 30 minute drive. My dad sees a rehab doctor every 6 months. This is the doctor we met last March, when my dad was admitted to the hospital for a pacemaker placement. It is thanks to this doctor that my dad was spared going to a nursing home for rehab. Thankfully he was admitted to the hospital's intensive rehab program for a week, where he did therapy three times a day, and this got him back into shape in order to be able to live at home under my care. 

While being examined today, the doctor did not like the sound of my dad's cough. Ten days of this cough and congestion and even antibiotics aren't helping. It was suggested that my dad see my mom's pulmonologist. So yet another think for Vicki to work on and figure out. 

Monday, March 6, 2023

Monday, March 6, 2023

Tonight's picture was taken in March of 2009. Mattie was home between hospital stays and Peter and him worked on Legos for hours and HOURS! Mattie was very happy to create a Lego village in our living room. Mattie could play with Legos for hours and in all reality, they were our life line to normalcy. They provided us the necessary diversion from cancer, to work as a family and just be ourselves. I can't tell you how much conversation occurred during these times. I think the activity of building enabled Mattie to let his guard down and just be a kid. 

Quote of the day: In nature, nothing is perfect and everything is perfect. Trees can be contorted, bent in weird ways, and they're still beautiful. ~ Alice Walker

This morning I made the decision to send my dad back to his memory care program. He is basically stabilized and not coughing. His energy level is lower than ever and I feel it is crucial to get him moving and re-engaged with the world, before he can't! It was my hope that I could get my mom moving and outside too! It has been 8 days of being isolated at home, with non-stop cleaning, cooking, and managing symptoms and demands. 

Mid-day, I got my mom in to the car and took her to Starbucks. She loves having tea and snacks at our local store. We managed in the store for about one hour. After which, she developed a coughing fit and was coughing up yellow junk. So I removed her and took her right home. Today was her last day of antibiotics and I have already alerted her doctor that she may need more support. My mom suffered from pneumonia and sepsis years ago when I was in college. She got that sick because she was caregiving for her mother. Since that bout of pneumonia and hospitalization, she is quite fragile when it comes to colds and respiratory infections. While my dad is returning back to normal, my mom is still struggling. 

This afternoon, I had just about enough. After I got my parents settled in the family room, I encouraged Peter and I to get outside and go for a walk. Prior to my parents moving in, I could walk miles and miles a day! Now unfortunately they have depleted me. I get more tired and I don't have the energy I once did to walk. This is very depressing to me. We did get out and walked over two miles, but it is clear to me that I need a walking routine, both for my physical and mental health.

Sunday, March 5, 2023

Sunday, March 5, 2023

Tonight's picture was taken in March of 2009. Mattie was going through his chicken nugget and French fry phase. Whenever Mattie requested a particular type of food, we did whatever it took to find and retrieve it. I mean this literally. At 3am one day, while Mattie was hospitalized, he wanted Chef Boyardee. Do not ask me why, because this was not something we ever served Mattie. But he must have heard about it somehow and wanted it then and there. Of course, pre-cancer if Mattie made such an outrageous request at 3am, we wouldn't have accommodated it. But I distinctly remember Peter leaving the hospital and went to our local CVS which is open 24/7. Peter came back to the hospital with Chef Boyardee in hand. However it was a miracle that he wasn't injured as he told me about deer which jumped out in front of his car on the way to CVS. I honestly do not know how we survived any and all of this. 

Quote of the day: We live in a world in which we need to share responsibility. It’s easy to say, “It’s not my child, not my community, not my world, not my problem.” Then there are those who see the need and respond. I consider those people my heroes. ~ Fred Rogers

It was another full day on the farm. My parents are still sick and now I am growing more concerned. With each day they do not move around and be active, the longer I feel it will take for them to rehabilitate and rejoin the world. I can see both of them are struggling now with movement. I recall learning in the hospital back in March 2022 (when my dad had his pacemaker surgery) that one day of being sedentary for an 80+ year old is equivalent to being idle for three to four weeks. 

At some point this week, I need to break their pattern and get them moving, even if they are not 100%. After my usual morning routine, I got my parents settled in the family room and Peter and I went out to the grocery store together. It was the FIRST time I left the house in a week! 

Sunny was sitting outside on the deck this morning and check out who came to spend some time with him..... Do you see the bird hopping on down? 

 

This week, our next door neighbors moved in. They have four children and this afternoon, they came over to thank us for all the gifts we brought over. This is Turner, and he is around Mattie's age! Turner loved Sunny and requested his photo taken with the Sunman! 

I have prepared three meals a day for a week now. Today, of course, our oven decided NOT to work! It truly is fitting! There are days I absolutely hate having a house, and this house in particular was such a nightmare to move into, because it needed a total overhaul of its infrastructure. I am hoping this oven problem is an easy fix, but if it is like everything else in my life, it is going to be a royal problem.