Saturday, October 22, 2022

Saturday, October 22, 2022

Tonight's picture was taken in October of 2006. Mattie was four years old and like so many fall weekends, we took Mattie to an outdoor festival. By this point, Mattie loved moon bounces, but it wasn't always that way. Over time, once Mattie got used to seeing these big bounce houses and understanding what would happen inside, he decided to try it! 

Quote of the day: The world was selfish, unjust. How could so many undeserving people be given the opportunity to raise children they didn’t even want while so many worthy individuals didn’t get the chance? ~ Brittainy C. Cherry

Today is day two of my dad taking Ritalin. I am already seeing a difference. So much so, that after breakfast, brain exercises, and walking 15 minutes around the house, my dad requested to come with us to the farmer's market. This is an earth shattering difference, because typically he has no energy and will instead demand to go to his recliner and then sleep for five hours straight. 

My dad instead went to the farmer's market and met this artist named Stephen. I happen to love his music, because he sounds just like James Taylor. We took my dad's rollator and after he walked around, we parked him right in front of Stephen's area with Peter. They had a good time listening to music and chatting with Stephen. Stephen shared his website with us today: http://www.stephenspano.info/. I can assure you caregiving is hard on a good day, but it is very difficult when providing care to someone who is apathetic. This is why I was eager to try Ritalin in hopes that it would give my dad some sort of quality of life. 

My dad's movement did not end with the farmer's market! Instead, my dad wanted to do more walking. So we walked up and down our street with him. In total, he has walked close to 4,000 steps today. This is a monumental change from his usual apathetic state! 

Years ago Peter's dad gave me this big mantle clock. Our townhouse did not have a fireplace and mantle, so instead, I placed this clock inside Mattie's walk-in closet and left it there for decades. I am very glad I did not donate it back then. It turns out this clock dates back to the 1840s. We know this because it needed to be repaired and sat in a clock shop for a year. We just got it back today and it fits our mantle, as if it was designed for the long space. Also on the mantle you can see two sets of dog figurines. They are known as wally dogs and they belonged to Peter's grandmother. Staffordshire dog figurines are matching pairs of pottery spaniel dogs, standing guard, which were habitually placed on mantelpieces in 19th-century homes. The Staffordshire spaniel was the quintessential Victorian bourgeois status-symbol ornament: no mantelpiece was complete without a pair of spaniels standing guard. Staffordshire dogs were also placed on the window sill. Staffordshire dogs are nowadays collectors’ items

As Peter has decorated outside for Fall, I have tried to highlight the season's colors all around the inside. Of course Mattie's, Mr. Sun, is the quintessential autumn piece. 

We have a nook/niche in our kitchen, and I like to decorate this area for the season. Of course this big ceramic moon stands guard of this area throughout the year. It is my Mattie Moon!

We have lived in this house for a year now, and I still can't figure out what to hang on the walls of our family room. I will figure it out in time. I first thought of a series of paintings that go together to now photos on canvas that highlight Mattie Miracle. 

I love this little ledge above the front door. I try to decorate it to match the season! Given that it is getting colder out, our special plants have come in for the approaching winter season. This big plant you see next to the front door, is Miss M. In other words a Meyer's Lemon tree. She is blooming lemon blossoms now and the whole house smells divine. 

Friday, October 21, 2022

Friday, October 21, 2022

Tonight's picture was taken in October of 2006. Each fall weekend, we would take Mattie to an outdoor festival. Mattie preferred being outdoors, exploring, and having an adventure. We were very different in that respect, but I came to appreciate the freedom associated with green spaces and nature. As you can see the festival had this pumpkin measuring stick, and I snapped a photo of my two boys next to it. 

Quote of the day: Frustration is a very positive sign. It means that the solution to your problem is within range, but what you're currently doing isn't working, and you need to change your approach in order to achieve your goal. ~ Anthony Robbins

Though I appreciate tonight's quote, my level of frustration as a caregiver has NO easy solutions and there is very little that I can do to change my approach. The problem is I am coping with rapid physical and cognitive decline in my parents and that simply just doesn't look pretty. My dad woke up this morning with hives, yet again. Unlike what happened about three weeks ago, today I saw no evidence of any insect bites. The question is what is causing the hives??? Since my dad goes to a memory care center three days a week, I can't always be certain if the issue has arisen from home or from the center. But managing this with someone who has moderate to late stage dementia is beyond exacerbating. I can tell him not to scratch and I can lather him up with creams, but he goes right on and continues scratching. Which spreads the issue. I have tried bandaging him up in the past or him using cotton gloves. Nothing works and I am just hoping this doesn't spread all over his body like what happened a few weeks ago which would require another doctor's visit. I am living in ground hog's day, where every day is the same craziness as the day before, but with only added problems tacked on. 

While my dad was at the memory care center today, Peter and I took a Foundation conference call. It was another non-profit who wanted to consult with us. They wanted to know how to follow our successful model of creating Standards of Care. This may sound easy, but there is nothing easy about changing a system and getting various professional groups to work together to accept there are no standards and then work on creating them. It was flattering that someone wanted to consult with us on "our model." Which of course made me pause and acknowledge that what we have accomplished in three years (from our vision to published Standards) was truly remarkable. 

More photos of share! Do you see that black lump of fur? That is Indie, who likes making herself comfortable on my parent's bed!

Peter has changed over some of our plantings for Fall. Today's addition was pansies. 

I love petunias in the summer and pansies in the fall. They are happy flowers to me. 

A Mattie Miracle sign in our garden. 

More pansies. 

Sunny's special time is at night! He loves hiding out in bushes to watch for deer and fox!

We are ready for Halloween. Frankly this may not seem like a big deal, but it is to us. Since Mattie died, Peter and I have NEVER decorated. We hadn't bought a pumpkin or any kind of decoration until last year when we moved into the house. In a way the house was a kind of a reset for us. Now I look at decorations as a tribute to things Mattie loved, rather than as being disrespectful because he is not physically with us. I also think because my parents are with us, I want them to celebrate and acknowledge the changing seasons, which therefore causes me to decorate. 

Thursday, October 20, 2022

Thursday, October 20, 2022

Tonight's picture was taken in October of 2006. That weekend we took Mattie to Butler's Orchard in Maryland. It was one of our favorite farms to go to during the fall. They had a wonderful hay tractor ride to a pumpkin patch, in which you could pick your own pumpkin off the vine. As you can see, Mattie and Peter got a wheel barrow and were in search of the perfect pumpkins. 

Quote of the day: I love you every day. And now I will miss you every day. ~ Mitch Albom

This morning I took my parents to see their primary care doctor. This doctor sees my dad every three months. Today our discussion was my dad's energy level. When the doctor asked my dad about his energy level, my dad responded that his energy level is great. Literally in unison my mom and I said... It's not! My dad can do an excellent snow jobbing a person and if  you don't dig deeper, you may think nothing is wrong with him. In any case, the doctor asked my dad whether he reads or uses his brain. My dad responded no! At which point I jumped in and told the doctor, we do the following to exercise his brain:

1) a daily journal, which I have been upkeeping since July

2) daily brain games that involve word finds, numbrix, reading comprehension, and other brain teasers

3) my dad goes to a memory care center three times a week, which provides all sorts of stimulation throughout the day.

4) a white board and electronic calendars as prompts and reminders of activities and time

Needless to say, when I hear my dad saying he doesn't do anything, I literally want to scream! In any case, my dad is starting Ritalin tomorrow morning and when we see the doctor in two weeks, I am bringing in all of my dad's activities for the doctor to see!

This afternoon, after I dropped my dad off at home, I took my mom to the local radiology center. My mom was scheduled for an Arterial Duplex Ultrasound of the legs. Do note this photo isn't of my mom. This photo was taken off the internet, to illustrate what I am talking about!

Last week, my mom went to see the podiatrist. At the appointment the doctor couldn't feel pulses in her feet. A few days later, we saw my mom's cardiologist, who prescribed testing. He did not seem concerned however because my mom completed a stress test in April and has no alarming symptoms now. Yet because my mom has coronary artery disease which required a cardiac stent in 2018, she is monitored closely. 

An arterial duplex ultrasound uses sound waves to create a color map of the arteries in the legs. It is used to identify (1) narrowing of vessels that may be causing leg pain when walking, (2) Resting leg pain, (3) Foot, ankle, heel or toe ulcers, and (4) Skin discoloration.

What I was concerned about was that she had a vessel blockage which would require the insertion of another stent. The radiology center is close to our home and they are excellent. The vascular tech allowed me in the exam room and explained the test to us. The test is performed while lying on an exam table. Just getting my mom undressed, in a gown, and on the table was challenging. She was also very anxious and a bundle of nerves. Fortunately the tech was lovely and helpful. 

The steps of the test:

1. The technologist applied warm gel on my mom's legs and arms.
2. A transducer, a small device similar to a microphone, was placed over various locations on her arms and legs.
3. Blood pressure readings were taken on her ankles, thighs and calves. There was great pressure from the cuff which made my mom very uncomfortable. 
4. Sound waves bounce off the muscle and tissue of the body and off the blood moving in the arteries. This creates "echoes." The echoes are reflected back to the transducer. A television monitor showed images as the transducer converts the echoes to electronic signals.
5. After lying down, my mom was asked to walk on a treadmill for five minutes, with a pressure cuff on each of her ankles. After walking, her pressures were immediately taken.

This is not a quiet test either. You hear all sorts of loud and unusual sounds as the tech records the blood flowing through the veins and arteries in the legs.

Overall the exam took approximately 60 minutes and about three hours after the testing, the results popped up in her portal. Thankfully she is fine. There is no explanation for her lack of foot pulse, other than what her cardiologist says.... she is very thin and this could just be her! 

This is what my days are like. Jumping from one appointment and issue to the other. There is no way that my mom could have navigated alone through any of these visits today. She needs great help moving about and her anxiety levels are high and need to be managed with all testing. 

Wednesday, October 19, 2022

Wednesday, October 19, 2022

Tonight's picture was taken in October of 2006. This was Mattie's fourth year attending fall festivals. We started in 2003, when Mattie was a year and a half old. So in essence he grew up celebrating fall by being active, exploring outside, and having family time together. In 2003, when Mattie first saw these big hillside slides, he panicked. The notion of going down them frightened him. But as you can see, he eventually tried the slides by sitting on Peter's lap. Mattie absolutely loved the whole experience. He was the exact opposite of me, as he loved adventure and the feeling of moving fast. Thankfully so does Peter! They were the perfect duo and as they were having these moments together, I was busy snapping photos. 

Quote of the day: It’s so curious; One can resist tears and ‘behave’ very well in the hardest hours of grief. But then someone makes you a friendly sign behind a window, or one notices that a flower that was in bud only yesterday has suddenly blossomed, or a letter slips from a drawer… and everything collapses. ~ Colette

This morning, I got up at 6am, so I had enough time to get myself together, make breakfast, and get my dad showered, dressed and downstairs. We had to leave the house at 9am, in order to get my mom to her 10am nail appointment. I am growing more and more concerned about my mom's walking and I can see that she is astute enough to know that she really needs to hold onto me when walking anywhere outside the house. The place I go to for nails is located in Georgetown, about a 30-40 minute commute from home. Keep in mind that when I lived in the city, this salon was about ten minutes from our townhouse. I certainly could find hair and nail services closer to me now, but I don't want to, as I have known these individuals since I was in my 20s! Yes I go back a long way with them! 

While at the salon today, I heard a story about a young man who wants to propose to his girlfriend of 7 years. This fellow has saved $8,000 to buy an engagement ring. He really wants to make his girlfriend happy, so he invited her best friend along to pick out a ring. Here's the kicker. The friend then turned around and took the girlfriend to the jewelry store to see the ring her soon to be fiancé wanted to purchase for her. When the girlfriend saw the ring, she told her friend that this was not the ring she wanted. She wanted the stone to be bigger, and that meant that she wanted a ring that cost $14,000. When the fellow in question heard this, he chatted with his soon to be fiancée. He explained that he did not have the money set aside to afford the $14,000 ring and wanted to move ahead with the ring he picked out. Her response to him was she would wait until he could afford the ring she wanted. 

Honestly this story has been swirling around in my mind all day. I try to remember back to being in my 20s when Peter proposed to me. Yes it is lovely to get a diamond, but I don't think the size of the engagement ring should be what's important here. I also wonder about the state of their relationship if the basis of moving forward with an engagement lies on how much he is spending on the ring. Marriage is not all fun and giggles. It requires patience, understanding, love, respect, and working together. I say working together because life brings many ups and downs, and this requires teamwork. I see no collaboration in this couple under non-stressful times, so I really wonder what will happen to their relationship during a challenge, crisis, or you pick the term! 

After the salon, I took my mom to Starbucks for tea and some snacks. Right next to our Starbucks is a Hallmark store. A place both my mom and I like walking through. But what it abundantly clear is that my mom can no longer maneuver through a store on her own. I left her in one aisle while I ran to another, and she kept calling me from across the store. Meaning, I had to stay next to her. That said it is very difficult walking side by side in some stores. Most stores are not designed to handle people with disabilities and their needs. The aisles are so narrow. This doesn't surprise me, as I learned this first hand with Mattie, but I am once again reminded of these challenges, not to mention that I have two parents both in great need of support. 

Tuesday, October 18, 2022

Tuesday, October 18, 2022 -- Mattie died 681 weeks ago today.

Tonight's picture was taken in October of 2006. Mattie was four and half years old and we took him to a Fall Festival that weekend. At each festival, Mattie would pick out a pumpkin. We typically had quite a collection by the time Halloween rolled around. I never remember going to a fall festival as a kid, so in many ways, it was like being a kid again while raising Mattie. I really had no feeling whatsoever about pumpkins before Mattie. Once Mattie came along, I developed a love for all things pumpkin. Even the color orange (one of Mattie's favorite colors)!

Quote of the day: Grief is an amputation, but hope is incurable hemophilia: You bleed and bleed and bleed. ~ David Mitchell

This morning, after my usual routine, I had a conference call with a PhD student. She reached out to me to discuss her dissertation. This student participated in the webinar I was on last week and she wanted to chat with me about the psychosocial impact of childhood cancer. She is interested in focusing on fathers, which is a great thing, since there are few studies examining them, their needs, and the resources that could be helpful to them on their child's journey. It was a very stimulating conversation and it put me in a better mood. 

Later this afternoon, I took my mom out to several stores. Not far from where we live in this wonderful commons area that has some clothing boutique stores. I love this shopping area because during the week it is charming and not crowded. We spent about two hours shopping, which is like therapy for my mom. However, there are very big differences in my mom's level of functioning between now and when she moved here in December of 2021. Today I had to assist her undressing, dressing, and taking her shoes on and off. Things I wouldn't have to do in December. It isn't like my mom physically can't do this, but from a balance standpoint, she really needs support. I know she is aware of this on some level and I just jump in to support her without making a big deal of it. I may not verbalize it, but I am observing everything. 

Peter shared several fall photos with me. Images he captured outside our house. A beautiful oak leaf! Mattie loved oak trees and this mighty leaf reminds me of him. I can't tell you how many acorns he and I picked up together over the years! Mattie used to give them to special people as gifts. 

A geranium still in bloom.

A Mattie Miracle colored rose. 

Last year, Peter's mom gave us this inflatable pumpkin. This one isn't large and it fits in our front flower bed area perfectly, making it look like a pumpkin patch.

Of course if Peter is out front, Sunny tags along. Sunny loves sitting in this flower bed. It is a strategic spot where he can look around for wildlife. We did not pose Sunny, he naturally sat in this spot and Peter snapped the photo. I always thought Sunny's coat reminded me of the beauty of the fall. 

Monday, October 17, 2022

Monday, October 17, 2022

Tonight's picture was taken in October of 2006. Mattie was four an a half years old and that weekend we took him to Walkersville, to ride on a special rail car. The ride took us through the country side of Maryland. Though it was cold outside, Mattie and Peter spent a good portion of the ride in the outside car. Don't you just love Mattie's smile?

 

Quote of the day: Grief is like a long valley, a winding valley where any bend may reveal a totally new landscape…. there is something new to be chronicled every day. ~ CS Lewis

Today was a winner of a day. I took my mom to physical therapy. For the most part there is a night and day experience for me as the caregiver, between my dad's PT sessions and my mom's. My dad's PT is very collaborative. She always greets me, wants to know how the week is going, whether I have any observations, and will ask me outright..... what I feel we need to work on this week. I absolutely love her. She has great energy, is very knowledgeable, and has a way to motivate my dad to get moving.

My mom's therapist never addresses me, and never asks my perspective. Of course that doesn't stop me from giving it. Today she was doing another re-evaluation of my mom, in order to qualify for more therapy. So my mom needs to show progress in order for Medicare to continue funding these sessions. My mom initially went to this therapist for neck pain and posture. So I agree, my mom has made great progress with these two issues. However, I have deep concerns about my mom's balance and ability to walk safely. When the therapist asked my mom about balance and walking, my mom said she was doing great. There was NO WAY I could sit through this assessment and not speak up. 

So I did! I explained to the therapist that my mom is doing better but I have concerns. I also felt that once my mom sees the neurologist, she may qualify for more therapy. The physical therapist did not agree with me and also told me that she is working with my mom on balance and walking. Yes true, she has begun to do this, but this hasn't been the focus of therapy over the last two months. Needless to say I felt that the therapist dismissed me and is also not helping me come up with solutions. I am the one caring for my mom 24/7, the therapist isn't! I would hope my insights and observations would be important.

I think the therapist is afraid of my mom. Because I pressed the issue today, she discussed the idea of walking with an assisted device. Specifically a walker. My mom wanted none of this and again I confronted my mom in session. I told her in front of the therapist, that the therapist wasn't telling my mom what we all are seeing, but that I am concerned and she needs to listen. We then moved to video taping my mom, so she could see how she walks both alone and with a walker. To me this is vital as my mom has lost most insights into herself and abilities.  I frankly think suggesting a walker to my mom was like hitting her from left field. Specifically since the therapist never said at any point over all these months that my mom needed assistance! Why not start with a cane? My mom is not interested in any assisted device and the therapist knows this, so having my mom use a walker in the session was revealing. Revealing with how out of touch this therapist is!

After the session was over, I had an absolute meltdown in the car. I am so overwhelmed caring for both parents and the last thing I need is a therapist who doesn't understand the situation! She thinks my mom is doing great! I suggest she come over and spend a day with us. Some professionals have a way of making the caregiver feel like they are going crazy! I was left feeling like I am the one with the problem. Yet I know FULL well the issue doesn't lie with me, I am working 110% here and I should have the right to be part of the treatment team.

Sunday, October 16, 2022

Sunday, October 16, 2022

Tonight's picture was taken in October of 2005. Mattie was three and a half years old and we were headed to a Halloween party at the University. My students were hosting an event for the community and they invited Mattie. As you can see, Mattie was a calico cat that year. He and I made this costume using a black sweat suit, we cut out felt patches and glued them onto the suit. We even took one of my head bands and added ears and a pair of my black tights became a tail. I am so happy Peter captured this photo because Mattie never celebrated Halloween that year. Mattie landed up in the hospital with sepsis from an undiagnosed ear infection. Thankfully, we saved the costume and Mattie used it in 2006.

Quote of the day: Loss is like a wind, it either carries you to a new destination or it traps you in an ocean of stagnation. You must quickly learn how to navigate the sail, for stagnation is death. ~ Val Uchendu

Typically opening the mail is a very stressful process in my household. My mom panics with every correspondence, bill, or statement. This week, Peter decided to hold all bills and other financial documentation until today. So after breakfast, once I got my dad's exercise routine done and he was in his recliner, I presented the mail to my mom. I told her it was yesterday's mail and that I was going to sit with her and work on it with her. That way it would go faster. I wasn't sure how this was going to work. I prepared myself with a meltdown. Turns out, this was a great way to do it. I opened everything and we discussed it together, and then I went to pay bills and file things using her system in her office. It was a brilliant plan and hoping we can continue today's experience because the daily nightmare of panicking, yelling, and her cursing have become too much for me to handle. What my parents don't understand is that I have a lot of other things to do, other than manage their needs and routine. 

It has been a glorious weather weekend! Though I was unable to get outside with Sunny yesterday, I was determined to go for a walk today. While my parents were napping in the family room, Peter, Sunny, and I went for a walk. It was the highlight of my week!

The one thing I like about living here is access to trails and the woods. Normally I am lamenting that we left the city, but this is the one perk I love. It is also wonderful to just walk out of our home and be able to jump on a trail within minutes. No car needed. It is very freeing considering my 24/7 routine!

Sunny just LOVES our walks! He is animated and doesn't act like a dog on chemo. 

Along our journey today we came across this orange thing! Can you see it!? It was ONE VERY LARGE spider. The spider was sitting in its web, which you can't see from this photo. Honestly this thing was creepy looking and it would have been right up Mattie's alley!