Monday, January 30, 2023

Monday, January 30, 2023

Tonight's picture was taken in February of 2004. Mattie was almost two years old and we took him to the Natural History Museum in Washington, DC that weekend. In the rotunda of the Museum is an enormous elephant. He is nicknamed Henry. Henry was an 11-ton, 13-foot-tall elephant, and he has been on display since 1959. Look at Mattie's wonderment and fascination in his eyes. 

Quote of the day: Too much work and too much energy kill a man just as effectively as too much-assorted vice or too much drink. ~ Rudyard Kipling

This morning I did many chores, including folding my parent's big blankets that I washed and put into storage bags. Since I bought them a heating blanket for their bed, they no longer need big heavy blankets on them. I folded the blankets and then got up on a ladder to put them at the top of my parent's closet. Somehow coming down the ladder, I missed a rung, and landed up falling backward. I did catch myself, but my back went into a set of drawers behind me. I saw the stars! So now I have the rib pain for Saturday (which I got helping my dad up at the restaurant, as I literally hit the side wooden rail of the booth) and now this back issue! Typically I am very sure footed but I am also very tired. 

While my dad was at the memory care center today, I returned emails, took my mom to CVS, and did about three more loads of laundry. Later in the day, I drove them to Maryland for an early dinner. 

Peter is in Boston, celebrating his dad's 89th birthday. For several days now they have been having dinners and others gatherings in his honor. This is Peter's dad, Don! Looks pretty good for 89! 

Meanwhile Peter's mom, a retired music teacher and department chair, runs a choir at the local senior center. This morning she led a choir concert. Peter snapped a photo of her (Barbara is in the front row, fourth from the right) with the choir. I am so glad Peter got to see and hear this performance. 

Sunday, January 29, 2023

Sunday, January 29, 2023

Tonight's picture was taken in February of 2004. Mattie was almost two years old. That weekend we took Mattie to the Natural History Museum in Washington, DC. The Museum had this wonderful room with interactive displays on the floor. Peter was showing Mattie each of the screens and Mattie had no idea what to make out of it. He clearly was intrigued and was absorbing everything around him. Peter and I worked hard at trying to stimulate and engage Mattie's mind, and fortunately we did not wait for the right time to do things. Because in our case we had to pack a lifetime into seven short years. 

Quote of the day: Hard times don't create heroes. It is during the hard times when the hero within us is revealed. ~ Bob Riley

I somehow hit one of my ribs yesterday while helping my dad out of the booth he was sitting in at the restaurant. I made note of it while it happened, but today the pain is a throbbing and a non-stop ache. Lovely on top of everything else. 

As is typical, after breakfast, I worked with my dad on his daily journal. We started this book in July of 2022, when he was working with a speech therapist at the hospital. Each day, he fills out the same sort of log. 

As you can see, the log is very specific and provides him guidance on what I am looking for him to record and reflect upon. This morning, he recorded his total walk count for Saturday. It was over 2,000. 

I had my dad go back to Saturday's log, and my question was.... what did you do to get such a high walk count? He looked at the log and then started reading me everything written on the paper!! I stopped him and told him to talk about only the activities that involved walking. A simple question leads to absolute confusion. 

Therefore, I modeled for him how he should answer the question. I referred to the logbook and said... 'you walked 15 minutes in the morning. Then you went to a restaurant. There you had to get out of the car and walk inside, then walk to the table, then later walk to the restroom, and then finally back to the car. All of the restaurant activities add to your step count.' I repeated this multiple times. 

My dad will say he gets it, but then if I ask the same question again, he has NO IDEA how to answer how he got a walk count of over 2,000 steps yesterday. Again, I try to go over the steps with him, but he expects these logical steps which we take for granted (get out of parked car, walk inside restaurant, walk to table, to restroom, and back to car) to be written in his log book. If it isn't written down, he can't seem to think about these steps for himself. It is this form of thinking that cognitive assessments do not seem to assess. But this thinking is what helps us live independently. 

I admit that after trying to get my dad to answer this question for 15 minutes, I got frustrated. My dad is naturally lazy and would prefer NOT to think and use his brain. I do support him but I also push him, and remind him if he doesn't work on these things, his brain will not function at all. I know my dad's therapists felt he should be pushed more and have more responsibilities. So when I have a moment of guilt about my behavior, I am reminded about what his therapists have said. 

By 11:30am, this was the state of affairs in my house. If I don't push my dad and create a daily schedule for him, this is how he would spend his entire day. 

I got my mom on the treadmill this morning for ten minutes (as this is part of her physical therapy exercise program). I think I wore her out!

Peter maybe in Boston, but wherever he is, a cat is typically by his side. This is Inky! She is a rescue and I hear that she is a real love. 

Saturday, January 28, 2023

Saturday, January 28, 2023

Tonight's picture was taken in February of 2004. Mattie was almost two years old and that weekend we took him to the Washington, DC aquarium. Though this is in our Nation's capital, I would say that this was the most pathetic aquarium I have ever seen. However, its small size worked well for Mattie and as you can see, he was very engaged. 

Quote of the day: Stressors are everywhere. Each and every day, we run into situations that constantly test us, rob us of our patience, strip us of our sanity, impact our focus, and cause us to lose control of our days. ~ Colleen Archer

It was another 5:30am rising today! The two women that come every two weeks to help me clean the house were coming today at 8:30am. That meant that Sunny needed to be fed, administered chemo, I had to get myself showered and dressed, breakfast made, and my dad up, washed, and downstairs before 8:30am. Some days I feel like I am on a bad game show of.... to beat the clock!

The trouble with the house getting cleaned on Saturdays is my dad is home. He wants to sit in his chair and you never know when he needs to use the bathroom. Nonetheless, I did his brain games with him and his exercise routine. After which he went to the bathroom. After I put him in his chair, I went to the farmer's market with my mom for an hour. I knew my dad would be sleeping and he wasn't home alone. 

The farmer's market is a diversion from being couped up inside and the monotony of the everyday routine and tasks. I have gotten to know several of the farmers as well as the musician who plays the guitar and sings. So though I do not have the opportunity to see my friends like I once did, I do have a circle of people I do see weekly. Whether it be servers at Clyde's or the farmers. I can't tell you how much I appreciate these outside conversations. 

Check out who visited our porch at 3am! Can you see the fox? I am surprised Sunny wasn't barking his head off. 

After doing chores this morning, I did not want to get under foot with the cleaning ladies, so I went into my bedroom for about thirty minutes and sat on my bed. Look who joined me!?

Miss indie and me! 

Yesterday I mentioned how my dad got himself worried about his medications. He wanted me to type up a list of what medications he takes in the morning and evening. I have no idea where this came from all of a sudden as we all have been managing his meds since 2020!

I did type up the list yesterday, showed it to him, and put it in the drawer that I keep all his pills. But today, he went back at it. He wanted his own copy of the med list and insisted on making notes on it. Now he is carrying this list around with him. Sometimes it takes a great deal of patience to manage the care with someone who has moderate stage, and moving to late stage, dementia. 

All I know is tonight, I overdid it. I took on other projects today, like cleaning the oven and other things. It is 7pm, and I feel nauseous and exhausted. So I am stopping for a while until I have to put my dad to bed. 

Friday, January 27, 2023

Friday, January 27, 2023

Tonight's picture was taken in February of 2004. Mattie was almost two years old when this photo was taken. It snowed that day, and we went outside onto our deck and commons area to play with the white stuff! As you can see, Mattie was fascinated. Though we lived in the city, we had a wonderful flat, secure, and expansive outdoor space. Mattie learned so much in that space and though we live in a house now, with a lot of land, I ironically still miss this charming space. So many memories were made there, and whenever I drive by where our old home was, I think about these fond moments in time. Never to be forgotten. 

Quote of the day: Being strong doesn't mean that you never break! Being strong means that even if you break into a million pieces, you still have the courage to pick those pieces up, put them back together, and keep going on. ~ Manprit Kaur

Believe it or not, I got my hair cut today. I know it is hard to tell in this photo, because it is still so long. But I got close to three inches cut from the bottom. I also got my hair conditioned today, which makes it look straighter and longer. Once I wash it, it will have more life to it. 

In order to get to the salon today, I got up at 5:15am. I woke up that early in order to feed Sunny and give him his chemo. Then get myself ready, breakfast made, and my dad washed and dressed. I dropped him off at the memory care center at 9am, and then drove with my mom into the city. My mom was getting her hair and nails done today. Typically when I am at the salon with her, I am the one waiting. But today, I booked a hair appointment while she was getting her nails done. My hair took a while and when I finally retrieved my mom, she started complaining. She wasn't happy waiting and the list went on. 

Literally at that point I screamed..... I can't win! Which is true, I can't. I can't do one thing for myself without push back and a lecture. Needless to say, this put me in a foul mood. 

While I was at the salon, I looked at myself in the mirror and all I saw was a tired and rapidly aging individual. I am worn out and there is little appreciation, but only more demands. When I got my hair conditioned, I was sitting at a table in the salon while this stuff was being added to my hair. I couldn't help but hear the woman across from me chatting to her hair dresser. It was clear she knew him well, and that she comes to the salon often. She told him she had an emergency today! Want to know what it was? 

The emergency was she had a party to attend tonight and she needed her hair done and styled. She set aside 3 hours to do this mind you! In addition, she continued by complaining about the fact that her nanny quit! NO SURPRISE THERE! This young woman has NO IDEA what an actual emergency is, because I do not and NEVER did at any point in my lifetime thought that getting one's hair done for a party would be considered an absolute emergency. I would like to show her what a real emergency actually looks like. 

I compare this thirty something to my life.... she clearly has a healthy child, gets invited to parties, has time to get her hair done, and here I am with little to no freedom, and managing intensive caregiving needs around the clock for 14 months straight without a break! 

I wish I could say after the salon I had a break! Forget it! I came home, let Sunny out, managed the laundry, put away dishes in the dishwasher, loaded up a bag for my dad, and then retrieved him from the memory care center and took my parents out to dinner. Of course as soon as I got him out of the car, he had to go to the bathroom. Some days the best I can do is take a deep breath and try to reset, because tomorrow will be more of the same. 

At dinner, my dad explains that he is worried! Particularly worried about one thing, that he even dreams about. I was expecting something major given his description. However, he is worried about the simple fact that I don't have a centralized listing of all the meds he is on. He says if something happens to me, no one will know what he is supposed to be taking. Honestly this whole dialogue was insightfully hysterical. Hysterical because he is trapped in his own world and the only thing he worries about himself and better yet it hasn't dawned on him that if something happens to me he is going directly to a nursing home. He hasn't made that leap in thinking. A listing of his meds is so low of the list of importance that I was ready to scream, but instead, I came home and typed up a list, so we can put that worry to bed. 

Peter sent me this photo today! He took it while on a walk with his dad in Boston. Mattie went to this pond many times when he was alive and he loved the swans. 

Thursday, January 26, 2023

Thursday, January 26, 2023

Tonight's picture was taken in January of 2003. Mattie was 9 months old and fully on! A friend of mine sent me this activity saucer when Mattie was 3 months old. At first I thought.... this thing was huge and would take up my entire living room (therefore I was hesitant to take it out of its box). However, I figured I would try it because Mattie was such an active live wire. At 3 months, Mattie was scared of this thing. But by month 4, he took to it like a duck to water. He loved all the noises it made, and he especially liked that he could stand up and twirl around in a full circle (as the seat rotated!). I used to keep magazines on our coffee table, but as you can see Mattie liked dumping them all over the place. 

Quote of the day: It is an absolute human certainty that no one can know his own beauty or perceive a sense of his own worth until it has been reflected back to him in the mirror of another loving, caring human being. ~ John Joseph Powell

Peter arrived in Boston today. His dad is celebrating his 89th birthday in a few days, and I am glad that he can be there for this special occasion. I know that Peter doesn't like leaving me to balance my daily routine alone, but I feel that it is important for him to check in on his parents every couple of months. 

It was a usual day of craziness on the farm. My dad's fitness trainer came over today! Teddy is a God sent. I love his energy and how he pleasantly pushes my dad. This is exactly what my dad needs, and I know this is one thing I can't do effectively. Yet it is vital for my dad's health and to keep him living safely in our home. 

While Teddy was here, I was busy changing my parents bed linens and doing laundry. After doing three loads of laundry, I was just about finished. But that was only the start of my day. I haven't mentioned it but it has been quite the week, with my dad pooping in the shower multiple days, and the bathroom floors being covered in urine. I am constantly cleaning, and cleaning, and cleaning some more. Fortunately my dad showers daily, because I think this is the major reason why I am able to keep his skin intact and in good condition. 

Meanwhile, I am honored to say that the Mattie Miracle item drive is underway! Look at this amazingly large donation that came in last night!!! 

Check out our Item Drive! All items help to stock our 4 free Snack & Item Carts at hospitals. These Carts provide toiletries, candy, snacks, and drinks to families caring for children with cancer and other life threatening illnesses. The Carts have been very well received and are in demand. 

I snapped this photo this morning. This was Indie right after Peter left for the airport. This is one depressed puss!

How do you like this? We were visited by three deer! Peter did put all the outdoor Christmas lights away, but I asked him to keep up Frosty! To me Frosty is reflective of the winter season. Apparently I am not the only one who loves Frosty. 

Wednesday, January 25, 2023

Wednesday, January 25, 2023

Tonight's picture was taken on January 1, 2008. Mattie was almost six years old and that day we went to Roosevelt Island. As you can see the ducks were following Mattie and his Ziploc full of bread. I realize the current thinking is NOT to feed the wild birds, but to me one of the fun things about being a child is feeding the ducks and learning about their behaviors! So every time we went to the Island, I always had bags of bread in tow for Mattie. It is hard to believe that six months after the photo was taken, Mattie was diagnosed with cancer. 

Quote of the day: Because that’s what kindness is. It’s not doing something for someone else because they can’t, but because you can. ~ Andrew Iskander

My hair hasn't been cut in a year. I took a photo of what it looks like now! My hair hasn't been this long since I was a child. In fact if you see me now, you will always find that I wear my hair up. I do because it is too long and straggly. It has no shape and given all the activity I do each day, it has to be up and away from my face. 

This coming Friday, I am finally going to get my hair cut. It is a real juggling act managing all of my parent's needs, but while my mom is at the salon on Friday, she will have to wait for me for a change.

This afternoon, I took my mom for physical therapy. She is beginning to appreciate why I made her change outpatient rehab clinics. My dad's physical therapist is EXCELLENT. I did not care for my mom's former therapist. She wasn't creative and definitely did not have good energy. To me, a therapist who has positive energy, is hopeful, and provides therapy in a creative manner (tailored to the individual) is worth pursuing. 

Cassidy got my mom up on a treadmill today for 10 minutes. My mom enjoyed it and the thinking is with more walking that she does, the more steady on her feet she will be. As she holds the treadmill, she also has to re-learn to put weight on her whole foot, not just her heels (which is why she is always tipping backward). 

It was a complete wash out today! Non-stop rain. The birds are hitting all our bird feeders and we have a whole family of cardinals that visit with us daily! 

Of course you can rest assure that if there is bird traffic, Miss Indie will be on the case. Indie has a wonderful cat tree in Peter's office! She loves hopping up on it to check for birds in the backyard. 

Tuesday, January 24, 2023

Tuesday, January 24, 2023 -- Mattie died 695 weeks ago today.

Tonight's picture was taken in December of 2007. Mattie was five years old and that day we took him to the US Botanical Gardens. This was a December tradition. We usually went on a cold weather day, because as soon as we walked into the Gardens, it felt like a tropical location! It was one big greenhouse..... warm, humid, and occasional misting of plants. It was a special trip each time we went. I remember this moment in time, because as Mattie was walking under a hanging plant, he looked like he had long hair. So I asked him to stop and pose for a photo.  

Quote of the day: If you see someone without a smile, give them yours. ~ Dolly Parton

I am thankful that Peter is home and can help me balance my dad on days that I have appointments with my mom. My mom had her yearly physical today. I think she was nervous about this and has been stressing over her fluctuating blood pressure. I have been trying to tell her that her blood pressure is okay, but to get more data on the issue, I have been tracking her pressure for four days now. But I think it was important to discuss it with the doctor. 

Overall I think my mom had a good appointment today. She got her Prevnar 20 shot for pneumonia and thankfully this is now a ONE AND DONE shot. So she won't have to take another one. Given her propensity for catching pneumonia, I am thrilled to have this vaccine on board. The doctor did discuss her gait and balance because it is clearly off and does put her at risk for falls. Thankfully my mom is complying with physical therapy, but we have a long way to go. I think we have all been focused on my dad since 2020, that my mom's health fell by the way side. 

I feel like I have made great strides with her since she moved in with me. When she moved in during December of 2021, she was only 90 pounds and had lost a lot of muscle mass. In addition, her neck was tilted to the right and her posture was hunched over. I honestly do not understand how her doctors and my dad's caregivers never said anything to her about her posture. All I know is I left my mom in April of 2021, and her posture wasn't like this. When I landed in Los Angeles in November of 2021, I was stunned! My mom had made a steep decline in only several months! 

Over the last year, I have helped her gain weight, correct her neck issues (which completed eliminated her neck pain), and now we are focusing on gait and balance. I do think moving her here was crucial for her health and frankly survival. 

So may days look completely different from what they used to be like, but one thing is for certain, I am making a direct difference in the lives of two 87 year olds. For that I have to give myself credit.