Saturday, March 18, 2023

Saturday, March 18, 2023

Tonight's picture was taken in March of 2009. Believe it or not, this was a physical therapy session taking place in the hallway of the pediatric units. Mattie had everyone participating, from his art therapist, nurse, child life intern, hospital volunteer, and his buddy, Brandon. The incredible energy, compassionate, and care provided by all of these individuals to us were extraordinary. I do not know how we would have made it on a day by day basis without these super human beings! What you can't tell, from this photo, was that ABBA music was playing in the background. The group posed to Dancing Queen, a song that will always have special meaning!

Quote of the day: Do not let the roles you play in life make you forget that you are human. ~ Roy T. Bennett

My dad's physical therapist comes to our home every Thursday and Saturday. This is a new arrangement, as we started with Laura last Thursday. So today was session #3. However, I knew Laura would work out well because she works part time at the hospital and this is where we first met her. 

When my dad's physical therapy sessions were covered under Medicare, we worked with Laura. However, Medicare covers just so much and most definitely doesn't cover on-going physical therapy in the home. Which is why I first turned to a personal trainer to work with my dad. The trainer that was assigned to work with us was fabulous! We all loved Teddy. But then a month into working with Teddy, a family member of his was diagnosed with cancer, and he had to move out of town for family support. It was a big loss to say good-bye to Teddy, because he had great positive energy and my dad responded to him. 

After losing Teddy, I was scrambling. I mentioned to my mom's physical therapist that we needed to find a Teddy replacement, and it was at that point she told me that Laura does private practice work in clients' homes. This is a blessing because my dad responds better to an outsider when it comes to exercising. I have to pick my battles and I take on more than enough each day, so I am happy to turf this crucial part of my dad's week to Laura. I also like the fact that Laura and the team at the hospital are familiar with my dad and that Laura can keep my dad's rehab doctor apprised on his therapy progress. 

While my dad was working with Laura today, I hopped back on the computer and completed two more training modules! I am hoping to have this one course completed tomorrow, so I can begin the second training course on Monday. I am motivated to complete these mandatory courses in a timely fashion, because my ability to serve on the Standards research team is contingent on this and the team is working on a large scale research study to help implement our Standards of Care. 

Look how cute our Easter chickees are when they are lit up at night!!! 

Friday, March 17, 2023

Friday, March 17, 2023

Tonight's picture was taken in March of 2009. This is a special hallway to me that is captured in this photograph. I visit this hallway every time I go to the Georgetown University Hospital. It is the hallway of the Children's Art Gallery. That day, there was a grand opening celebration of the Gallery. We happened to be home that day, but drove to the hospital to participate in the event. Mattie and I both submitted art work, which was on display and as you can see, Mattie had a way of having an entourage! Taking the photo in blue is Kathleen, one of Mattie's HEM/ONC nurses. Next to Kathleen is Anna, Mattie's physical therapist and pushing Mattie in the wheelchair is Meg, a child life intern, who Mattie loved. These are incredible women, who I will never forget. I am sure most patients, families, and healthcare providers traverse this hallway daily. But none of them have these incredible memories of the opening day of the Gallery!

Quote of the day: Imagine if we were all magical leprechauns, and every wish ever made on a four-leaf clover obliged us to help others obtain their wishes. Now imagine if people simply lived like this were true. ~ Richelle E. Goodrich

This morning, after getting my dad off to his memory care center, and my mom situated, I went back at this ethical research training that I am required to do in order to be an official part of the Standards of Care research team. When I tell you this training is painful, I am not kidding. It is particularly challenging because I do not have big chunks of time to work, like I once did! In any case, this photo shows 14 modules that I need to complete within just ONE course. I have four courses altogether in my training folder. I completed one and I am trying to finish course number two. 

After each module, I have to take a quiz. You can only take the quiz ONCE! So you will notice that in my third module's quiz, I received a 75%. That freaked me out, so now I am reading carefully and taking my time at answering each module's questions. I have no idea what happens if I fail a course, and don't plan on finding out either. I am hoping I can get all 14 modules done this weekend, so I can begin the second course on Monday. 

Peter inflated our Easter chickee display today! It means to me that Spring is here!

Within thirty minutes of inflating this structure, our neighbor next door came over to check it out. He is 11 years old and has a special need. We were thrilled that he approved of the display and that it brought him fascination and happiness. 

The winter wreath is down and the spring one is up!

Meanwhile, Peter has taken on another big chore. He finished shingling the shed roof yesterday and today he moved to sanding our deck. The deck is in terrible shape and it truly needs some tender loving care. 

I snapped this photo of my dad today with his St. Patrick's Day pins!

I took my parents out to eat this afternoon and the restaurant had specials for St. Patrick's Day! I ordered Shepherd's Pie. It was delicious, but then again, I am a lamb fan. While dining there, I heard bag pipers. I am on the fence about whether I love that sound or can't stand it. My mom happens to love it and she was going room to room in the restaurant tracking down the guys in kilts! There was a wonderful festive vibe in the restaurant, and all the servers had green clover gear on in honor of the day. 

Thursday, March 16, 2023

Thursday, March 16, 2023

Tonight's picture was taken in March of 2009. Mattie was home between treatments and as you can see was doing water play in our living room. I can't tell you how many times this particular space in our home was used for water, paint, Legos, trains, and even clay. Mattie was a very hands-on fellow and though we never used the pink basin for medical reasons, we brought it home from the hospital so Mattie had another receptacle to fill with water! Despite all that he was going through, don't you just love that smile?

Quote of the day: Anxiety happens when you think you have to figure out everything all at once. Breathe. You're strong. You got this. Take it day by day. ~ Karen Salmansohn

I would have to say today I am a combination of exhausted and frustrated! The Research Team, that the Foundation is working with, had a call at 9am this morning. Though I would have liked to participate on the call, it was impossible given all that I am balancing. At that time of morning, I have to get my dad up, showered, dressed and downstairs for breakfast, because his physical therapist comes at 11am on Thursdays. I try NOT to dwell on all the things I am missing out on. Not just caring for myself, interacting with friends, but also being a professional human being! 

Caregiving has resulted in one thing...... a complete fading of Vicki the person. Because I couldn't be on the call today, I had Peter participate. Of course Peter can represent the Foundation beautifully and frankly on conference calls, he is much better than me, because his consulting skills kick in and he has a way of drawing out dialogue and insights from everyone. Nonetheless, I still wasn't happy about not being on the call. I am not sure if it is the call itself that upset me, or the sheer fact that I have no independence or freedom. 

On another note, my dad is super fixated on Peter. He always wants Peter to be going out with us when we eat (which isn't possible given that Peter had been looking for a job and is now focused on house projects), and my dad's latest kick is his focus on how happy he is that Peter found a great job opportunity. My dad is very fond of Peter and my dad reminded me today (as if I needed this), the enormous stress Peter was under because of his job hunting. Honestly some moments I can go with the flow, and others, I just can't! This afternoon, after hearing this lament about Peter twenty times, during the 21st time, I said, I GET IT! I know all about Peter's stresses, but if my dad wanted the TRUE 411 on daily stresses, I would enlighten him. Of course I never did! But my parents don't see my stresses, how I am compromising my own life to manage these daily 24/7 tasks, and this all frustrates me. I am very tired and this contributes to my inability to be a mature, kind, and rational person all the time. When feeling this way, I have to pause, take a deep breath and as today's quote points out, I have to take it 'day by day.'

Wednesday, March 15, 2023

Wednesday, March 15, 2023

Tonight's picture was taken in March of 2009. Mattie was in the outpatient clinic that day, and was visited by employees of United Airlines. They came to deliver teddy bears to all the children. As you can see, Mattie was posing with the United representatives and the cute bear! The generosity of countless organizations, businesses, non-profits, and our care team made the daily stresses of hospital life much more manageable. I can't tell you how even the smallest of gifts could turn a difficult moment around for us!

Quote of the day: Perspective is everything when you are experiencing the challenges of life. ~ Joni Eareckson Tada

Given how my mom is feeling, I have canceled everything on her schedule for this week, including physical therapy and a trip to the hair salon. I got my dad up at his usual time, followed my usual schedule with him, and then Peter drove my dad to the memory care center. By 10am, my mom was still not downstairs, so I went upstairs to check on her. She looked completely wiped out and exhausted. After she had breakfast, I helped her to the couch to rest for several hours.

While my mom rested, I logged back onto a training site I was given to continue the course work I need to complete to participate in the Foundation's large scale research study. I have to tell you this is beyond PAINFUL! Yesterday, I completed these four modules. After each module, I have to take and pass a quiz. You can see my scores range from a 60% to 100%. Yesterday's modules were on financial conflicts of interest in research. The materials read like a legal briefing! When I completed these four modules yesterday, I thought I was DONE! NOT SUCH LUCK, as I could see more course work to complete in my folder. 

This morning, my folder showed that I had three more courses to take! You might say, how bad could that be???? I assure you it's bad, because one course has 14 training modules. This one course will take me days to complete given my caregiving schedule. Today I completed 5 modules out of the 14.

This is the listing of the 14 modules and as you see I completed 5! I did well on four out of the five quizzes. One quiz, I missed one question, and that gave me a 75%. Which is why I need to focus and get it right the first time, because I don't want to know what happens if I fail the course. The notion of doing this again is NOT appealing. 

Meanwhile, Peter is working around the house on multiple projects before starting work on April 15! Despite the wind and cold temperatures, he was re-shingling our shed roof. 

While putting laundry away in my dad's bathroom, I had a side kick! Miss Indie LOVES the sun and basically travels around the house capturing the warmth through the windows. 

This afternoon, I received this photo from our friend, who happens to be the leader of our Standards of Care research project. She is out in Portland, Oregon at a conference. One of the sessions featured Mattie Miracle, so she thought I would love to see this.... which of course I DO! 

This session covered a research study conducted by a psychosocial professional based in Texas. The researcher implemented the Psychosocial Standards of Care at her institution and she was sharing data about the process. It is always wonderful to see the Standards being operationalized in research and practice in order to improve the quality of care for children with cancer and their families. 

Tuesday, March 14, 2023

Tuesday, March 14, 2023 -- Mattie died 702 weeks ago today. 

Tonight's picture was taken in March of 2009. Mattie was admitted that day to the hospital for his next round of treatment. How do I know? I know because when in the hospital, Mattie insisted on ONLY wearing pajamas. When he was home or arrived at the hospital from home, he would dress in regular clothes. Interesting, no? I think that said volumes. In any case, that day I snapped a photo of the IV behind Mattie. Notice that the liquid going into Mattie's body was RED! It was Doxorubicin, one of the chemotherapies in Mattie's treatment regimen. Doesn't the color make you want to take notice and warn you to be cautious around it?

Quote of the day: The greatest remedy for anger is delay. ~ Seneca

When I went to wake my dad up this morning, my mom explained to me that my dad was up every 30 minutes last night. He got up, would go to the bathroom, and then sit on the toilet for about 15 minutes. Then he would repeat this cycle every 30 minutes. My mom is still recovering, and is on her third round of antibiotics. In order to heal, she needs to sleep and rest. Unfortunately that did not happen for her last night, so she was in a state today. Naturally I have to figure out why my dad is doing this night behavior. This is unusual for him and of course my mind wanders to him having a urinary tract infection or kidney stone. The sad part is my dad can't report out how he is feeling and he doesn't even remember being up all night! Which makes understanding or having insight about what he is experiencing very difficult. 

In addition, today was one of the days my dad was home the whole day. He did not have his memory care program, which meant that it was hard for me to get anything done. I was scheduled to take my parents for a dental cleaning today, but given my mom's health, I canceled that plan too. 

Later in the morning, I received an email that I had to take on-line ethical trainings for a research project Mattie Miracle is involved in. Honestly I just can't handle one more thing on my plate. I literally went through four training modules today and got a certificate of completion. I thought I was therefore done, until I went back to my course folder. 

Once in the folder, I found several more courses I have to complete! Literally, I LOST IT. I became angry, especially since I am juggling cooking, cleaning, and my dad's bathroom trips all at the same time. So instead, I decided to follow the sentiment that is reflected in tonight's quote...... I literally closed the on-line training program and will open it up another day. I can only absorb so much at once and that decision, helped to dissipate my frustration.

Monday, March 13, 2023

Monday, March 13, 2023

Tonight's picture was taken in March of 2009. I took this photo because I wanted to capture the antics that typically occurred in Mattie's room! The two women with blond hair are Whitney and Lesley. They were both child life interns and phenomenal people! Mattie loved them, which was high praise, because Mattie didn't get along with everyone, especially when so sick. The fellow peeking out of the door is Brandon. Brandon was Mattie's best buddy. The boys met at the hospital, as Brandon was diagnosed with cancer about a month after Mattie. Despite their age difference, they were amazing friends. 

Quote of the day: Gratitude turns what we have into enough, and more. It turns denial into acceptance, chaos into order, confusion into clarity...it makes sense of our past, brings peace for today, and creates a vision for tomorrow. ~ Melody Beattie

We have become good friends with all the wonderful individuals who serve us when I take my parents out to eat. I have become so connected with them, that I have their cell phone numbers and we chat throughout the week and I always give them a head's up when we are coming in. 

Every Sunday, we go to the same restaurant for an early dinner. Cheryl is our server at this particular restaurant. Cheryl has been following Peter's job search and she has been sharing in my angst for over a week, as we were awaiting a job offer for Peter. I shared the good news with Cheryl about the offer on Saturday. 

Don't you know that when we arrived at our restaurant table on Sunday afternoon, Cheryl surprised Peter with a beautiful card, flowers, a balloon, 'Yay' plates and napkins.

The wonderful balloon! The special part about all of this is we weren't expecting any of this and Peter was very surprised and truly touched by her kindness. 

Peter and Cheryl!

This is the meaningful card Cheryl wrote to Peter. I thought it was so touching that I snapped a photo of it!

It reads:

Dear Peter, 

Congrats!!! I'm so very happy for you (& Vicki)!!

Reverba took months and months trying to find the..... Perfect man for the job, the right man for the job, and the very best man for the job.... not to mention, the most capable, caring man to take over the company, to be president and they were "smart" enough to realize that's YOU!

No doubt your contribution, hard work, and leadership skills will greatly benefit so many people's lives. I wish you every happiness, success and satisfaction in your new, well-deserved position!! Love Cheryl

When I got home, I placed the flowers in a vase and have all these items in our front hallway. Cheryl was able to do all the things I would have wanted to do! Which makes me grateful. 

Yesterday evening, Peter and I went over to my neighbor's house. My neighbor has her own hands full, as two out of her four children have special needs and she recently moved into the house. So she constantly has a juggling act going. Not unlike what I have going on in our house, but for different reasons. 

We played the card game, Five Crowns, together! I had my neighbor's 11 year old explain the rules of the game to me, but basically Peter and I consulted with YouTube before we went over and saw a tutorial on how to play. Since I am not really a card game, or board game person in general, I needed all the help I could get.

Make a long story short, I caught on quick, as the game is very similar to Gin Rummy. Naturally I haven't played with kids for quite some time. What is typically evident is that kids gravitate to Peter first. Peter knows how to horse around, make jokes, and naturally draws kids in. While Peter was doing that, I was observing everything and everyone and getting an idea of what was going on throughout the house. After we played with my neighbor's 11 year old, then her four year old woke up and came downstairs. The four year old calls Peter, "Mr. Peter" and she has met him before and enjoys interacting with him. In any case, the little girl wanted to play Candy Land with us, so we played several rounds and then at 9:30pm, I stood up, left Peter behind, and headed back home to take my dad upstairs to bed.  

Sunday, March 12, 2023

Sunday, March 12, 2023

Tonight's picture was taken in March of 2009. That day, Mattie was invited to the hospital to attend the ceremony for the launching of the children's art gallery. Mattie was excited to attend, especially since he contributed art work for the exhibition! Ironically Mattie's creative story is still on display within this gallery. Next to Mattie was Kathleen, one of his outstanding HEM/ONC nurses. They both made a silly face for the camera, and I caught them in action. Mattie's nurses are incredible women. Competent, fierce advocates, and deeply compassionate. 

Quote of the day: We need to remind ourselves of the beauty of human connection and of nature and pull ourselves out of devices for a moment and appreciate what it is just to be human beings. ~ Olivia Wilde

Have you ever heard of this game? I know I haven't! Peter and I have been invited over to our neighbor's house this evening to play Five Crowns. We will be playing with our neighbor and her oldest son. 

Naturally if you have been reading my blog for the last year plus, you know I don't do social things anymore. Much less get out of the house if it isn't to take my parents to appointments our out to eat. 

I am going for multiple reasons. One is that it is right next door, two, my parents will have had dinner already and by that point will be relaxing in the family room, and three, my neighbor understands that I am a full-time caregiver and can only stay for an hour or two at the most. 

But to say that I get anxious now regarding any sort of socialization is to put things mildly. I realize my life isn't normal and seeing people's reaction to what I am balancing makes me edgy. In addition, my ability to interact and play with children is rusty. After Mattie died, my time with children has been little to non-existent. There is an art form to playing with children and all I know is I am tired, exhausted, and therefore not as with it and in tune as I once was. I do think intense caregiving can suck the life out of you and between that and the clocks moving forward an hour, I am dragging today. 

Any case, wish my luck with learning to play Five Crowns and being able to make a normal human connection.  

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.