Saturday, February 4, 2023

Saturday, February 4, 2023

Tonight's picture was taken in March of 2006. Mattie was almost four years old and this was a typical weekend. We kept Mattie busy, because he preferred it that way. Mattie was all about building, creating, and playing with his creations. Of course, he always wanted a side kick. I played that role by the weekday, but on the weekends, Mattie and Peter teamed up and had many adventures together. 

Quote of the day: Instead of worrying about what you cannot control, shift your energy to what you can create. ~ Roy T. Bennet

Last Saturday, while assisting my dad, I hit my left rib cage against a wooden booth at a restaurant. The pain lingered for about two days and then went away. Today, the pain is back, with persistent aching and throbbing. Typically I would just ignore it, but on top of everything else I am dealing with, it seems to be pronounced and a nuisance. 

It was a typical day here with the usual morning routine. However, it is absolutely frigid out, so I did not take my mom to the farmer's market. Something we always do on Saturdays! Instead we went out for a late brunch. Though freezing, I find that going out in the only way that will keep my dad physically moving and somewhat engaged. It is a sad commentary that he doesn't eat well when at home. He prefers going out and this is still the first question he asks me every morning when I wake him up..... "are we going out to eat today?"

Taking my parents out is not easy. It involves multiple coats, one being a battery powered heated vest for each of them, hot hands for their pockets, and a bag filled with items that my dad may need while out. They both need a lot of support and throughout an entire meal like today, my dad did not even say two words. He looks out of it most of the time and it takes a lot of energy for me to carry a conversation, order for them, manage the bathroom routine, and interface with our servers and the managers who we have gotten to know. I am grateful for these individuals because some weeks they are the only rational people I talk with all week.  

It is 6pm, and I am worn out. I am headed to get into pajamas, have hot tea, and hopefully sit on the couch, until the next need or demand arises. 

Friday, February 3, 2023

Friday, February 3, 2023

Tonight's picture was taken in February of 2006. That day, Mattie and I were in our living room designing Valentine's day cards for his friends in preschool. Certainly I could have bought cards in the store and had Mattie scribble on them, but since Mattie was into craft projects, I figured why not turn this into a fun activity. Mattie absolutely loved it. Mattie was always into creating, building, crafting, and of course using glue and paint brushes. However, what was equally noteworthy was Mattie was very neat. It was rare if he got paint and glue on himself unless it was intentional. 

Quote of the day: The health of the eye seems to demand a horizon. We are never tired, so long as we can see far enough. ~ Ralph Waldo Emerson

This morning, after my dad went to the memory care center, I worked on the Power Point presentation for an upcoming webinar we are involved in on February 14. I unfortunately can't participate, as I am taking my mom to a doctor's appointment (an appointment that has been scheduled and rescheduled since September). Thankfully Peter is stepping in and representing us!

All day though, I have been exhausted. Before picking my dad up, Peter encouraged me to take my parents out to dinner closer to home. Typically every Friday and Saturday, I drive them to Rockville, MD. As we love our server there! But it is frigid, I am dragging, and frankly I did not want to wait until 4pm to eat. So I listened to Peter and it worked out very well. I picked my dad up from his memory care center at 2pm and drove right to the restaurant closer to us. 

When we walked into the restaurant in Ashburn, VA, we shall a familiar face. Erica, the manager, greeted us. We knew her from the Reston of Clyde's. When that restaurant closed its door in May of 2022, Erica was transferred to a restaurant in DC. Which is why I was stunned to see her in Virginia. Erica transferred again and now we will be seeing her more often. The camaraderie at the Reston Clyde's was indescribable and all the people who worked there seemed to love their job, loved their customers, and treated their regulars like family. So seeing Erica reminds us of the good times we had at the Reston restaurant. 

We love the Willow Creek Farm restaurant in Ashburn, VA. Each week we work with Cheryl, who is an outstanding server. She knows us so well and over time we can gotten to know about each other's families. Cheryl wears pins and earrings reflective of the season, which I just love. She mentioned a couple of weeks ago when we were talking that she doesn't have a Valentine's day pin. So on Sunday, we are surprising her with a Valentine's day gift of chocolates and this pin! I appreciate all the wonderful people in our lives who work hard each week caring for me and my parents. Which is why, when I can, I like surprising them with gifts and treats because I want them to know they make a difference in our lives.

Thursday, February 2, 2023

Thursday, February 2, 2023

Tonight's picture was taken in February of 2003. Mattie was 10 months old and he desperately wanted to learn how to stand and walk independently. Mattie received this activity table as a gift. Peter assembled it and was sitting next to Mattie playing along with him. Mattie loved hearing music and musical notes, so he would happily bang away at this table. 

Quote of the day: That's the worst thing about dementia: it gets you every time. Sufferers look and act the same but beneath the familiar exterior something quite different is going on. They're in another world and you cannot enter. ~ Carol Thatcher

This morning, there was NO breakfast for my parents. They both had to fast because they were getting their annual blood work done at the doctor's office. In addition to bloodwork, my dad also had his annual physical. Fortunately I took my mom for her physical about ten days ago, otherwise today's visit would have taken forever. 

Managing both of my parents at the doctor's office is a complete show. As I was helping my mom to the lab area of the clinic for her blood draw, I could see a tech was calling my dad back for his physical. I literally had to leave my mom's side and manage my dad. Out of the two of them, he most definitely can't interface with anyone without supervision. Thankfully I had given the tech my mom's paper work and she was seated waiting for her turn.

We had a new tech working with me and my dad today and I did not like her one bit! I thought she was clueless, insensitive, and had no bed side manner what so ever. But I took a deep breath and dealt with her. She wanted my dad to get out of his clothes and into a gown, and I refused. TWICE! By the second time she understood she was getting no where with me. Getting my dad out of his clothes and back into them is a true labor, of which I wasn't going to do!

The doctor himself is an interesting character. My faithful blog readers will know that I call him 'dopey.' The doctor keeps reminding my dad that he has to use his brain, because it is a muscle. The doctor wants my dad to learn a new word everyday. I have definitely added this request months ago to our daily schedule. But my dad can't remember past one minute. So he did not know that the word I gave him this morning to learn was WIZEN (to wither). 

The doctor wants my dad to actively engage in activities and to be less of a couch potato. As research shows the more physically active you are as you age, the better your brain health. I get what he is saying, but frankly that ship has sailed away long ago. This is a conversation a doctor should have had with my dad 15 years ago! Now it is truly too late, not only because my dad is a physically lazy person by nature but because his cognitive decline makes learning and initiating things close to impossible. So when the doctor tells him to do things, he is basically telling me............ ADD THIS TO YOUR PLATE! Which only infuriates me! 

The doctor continues to be troubled by the fact that my dad is incontinent to bowels. In fact, yesterday, my dad pooped all over the shower. The shower looked like a crime scene. The doctor feels that some of my dad's meds maybe causing this, whereas, I think this is a by-product of his dementia. So we disagree on this. The doctor has now asked me to STOP all of my dad's dementia meds. We stopped Donepezil two weeks ago and now we are also stopping Namenda. He seems to think I may see a difference in my dad's GI issues! I highly doubt it, but I am complying. But here is the real kicker. The doctor was telling me that dementia meds are very controversial and other than neurologists, most other medical doctors see very little evidence in the research to merit prescribing them! Well if that doesn't take away any hope from a caregiver, I don't know what would! Dementia is an absolutely horrible disease. It challenges me beyond description most days. It is like dealing with an obstreperous child, who has no memory.  

My dad's memory issues are quite significant. It isn't just short term issues, but long term ones as well. He has no recollection of many of the houses he lived in and even when I show him photos of places and people, the photos don't jog his memory at all. He has no idea when my birthday is and so forth. Dementia has made him turn inward and the only thing on his mind is his own needs. 

After my dad was examined, he then needed to get his blood drawn and the Prevnar 20 shot for pneumonia. Unfortunately my dad was very dehydrated so they couldn't get blood from either arm. So they moved to the wrist. In addition, they wanted him to submit a urine sample. That was equally hysterical. If you give him a cup, he has no idea what to do with it. In fact, when I take him into the bathroom, he has no idea what to do and his famous question to me is...... NO WHAT? He needs step by step instructions when in the bathroom, and I literally mean step by step..... walk over to the toilet, turn around, take down your pants, etc! Which meant that I had to capture the urine myself from him! I would like to know how on earth they get samples from other older adults who come in without family support? 

Needless to say after this doctor visit, I felt worn out. But my day didn't stop there, because I had to take them both out to eat. What I particularly loved was that two of the techs in the doctor's office asked me directly..... am I going to get my parents something to drink and eat now (as they had been fasting and clearly hungry and dehydrated)? I found the whole line of questioning insulting and they clearly know nothing about me or what I do for my parents on a daily basis. 

Wednesday, February 1, 2023

Wednesday, February 1, 2023

Tonight's picture was taken in March of 2004. Mattie was almost two years old and he was fully on! He put on Peter's baseball hat and was walking around our home with his sippy cup! That sippy cup of milk was like Linus' blanket from the Peanuts series. No matter the time of day or what season it was, the sippy cup was in tow. 

Quote of the day: Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning. ~ Albert Einstein

Last night, Peter gave me a gift from his mom that he brought back to me from Boston. This was on the card's envelope.... "Vicki, our valentine!" Isn't that lovely! It meant a lot to me, so I snapped a photo of the card. 

This gift was this colorful hand painted trinket box. When I saw it, I then opened it. Inside was a card from the store it was purchased! It was from Venice Beach, California. Barbara bought this box when she came out to visit with me and my parents in 1998. Now all these years later, she is passing along the box to me. The box really symbolizes happier and simpler times, when I was younger, more naïve, and when I thought life was going to go much differently for me. 

I am honored to have the box, because I am not sure it would have as much meaning to the average recipient. 

Yesterday was a down day for me. Today, I tried to reframe my thinking. In the process, an email came in with an invitation from a medical and psychological association in Jamaica who heard about our Standard of Care and have invited us to speak virtually at their conference on Valentine's Day. It is a wonderful feeling to know that the Standards of Care that we helped to create are influencing care in the Caribbean. Of course I can't participate given the show I am balancing, but I am glad that Peter will be representing us and sharing our perspectives. 

Tuesday, January 31, 2023

Tuesday, January 31, 2023 -- Mattie died 696 weeks ago today. 

Tonight's picture was taken in February of 2004. Mattie was almost two years old and whenever I see this photo I get a chuckle. Peter was trying to snap a photo of Mattie. Clearly, Mattie had other ideas. Whereas, I was sitting on the couch, looking wiped out. Mattie had two modes.... on and off. I remember Peter and I up at all hours and working the whole day away trying to raise Mattie. I said it then and I say it now, parenting was the toughest job I ever did. 

Quote of the day: Uncertainty is the only certainty there is, and knowing how to live with insecurity is the only security. ~ John Allen Paulos

Peter sent me this photo this morning from Boston! Yes that is snow. I am happy to report that he is back home this evening! Though I am sure coming home is not an easy transition given the chaos of our life. 

For anyone who grew up in the 70s, this photo needs NO explanation. It's Laverne and Shirley! Somehow these iconic shows that I grew up watching are no longer possible today! I know Peter told me that Cindy Williams died on January 25, but somehow it registered with me today. It is hard to see such an end of an era, when two great stars, who seemed larger than life, are now both dead. 

I think every young girl at the time could identify in some way with Laverne or Shirley, or at times both. Here were two women, who were the best of friends, trying to make a living, and trying to find their way in the world. Each week on TV they brought laughter, and at times sadness and reflection. They were one of the highest grossing TV shows and back then when regular TV channels were what most people had and watched, America was glued. This of course is a concept that doesn't apply to TV today, we have many more options and unlike when I was growing up, no one now says.... oh it's Thursday so the line up is..... 

With the introduction of cable and streaming, everyone watches whatever they want. Those options weren't true in the 1970s, but what was the result was that many of those shows influenced how we communicated with each other. I know when I went to school, there were kids who were imitating Fonzi from Happy Days (leather jacket, the thumbs up), Mork from Mork and Mindy (in fact there was a kid who would greet me each day with a mork hand shake!), and who could forget singing the opening theme song of Laverne and Shirley.... Schlemiel! Schlimazel! Hasenpfeffer Incorporated. We gonna make our dreams come true, doing it our way!

I think Cindy Williams' death points something out to me that is hard to grasp. Despite how much one does in this world, the memory and impact we can make are fleeting. How many kids today know who Cindy Williams was? Have they ever heard of Laverne and Shirley? I suspect the answer is very few! There are days, like today, that I can get down on myself. For my inability to get anything done, my inability to focus, to work, and basically feel like I am contributing to something bigger than myself. But then I step back and look at these icons. What they did for TV, for women in the industry, and how they influenced the lives of their viewers is tremendous. But at the end of the death, we all die, and this is the equilibrating factor. What keeps a memory alive are the lasting connections we make on this earth. Which is why as long as Laverne and Shirley viewers are alive, their contributions remain alive forever. 

Of course I feel this philosophy also applies to my Mattie, which is why for 15 years I have been writing this blog. I know all too well how easy it is to forget, and how much harder it is to remember the fine details. But these details do matter and they are important to me. 

Clips from Laverne and Shirley:

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.