Saturday, November 12, 2022

Saturday, November 12, 2022

Tonight's picture was taken in November of 2003. Mattie was a year and a half old and was at his first fall festival. It was a bit overwhelming for Mattie, but one thing he gravitated to was the pumpkins. Each fall, we would have quite a collection of these orange orbs in our home from each of the festivals Mattie attended. 

Quote of the day: Here’s what I know: death abducts the dying, but grief steals from those left behind. Katherine Owen

While making breakfast this morning, I saw Peter walking by the window with this very large branch. Can you see it? Surrounded by trees, makes it a daily routine for Peter of walking around and collecting sticks and branches. Mattie would have absolutely love it, as he was a big collector of things from nature. 

Later in the morning, we took my parents to the farmer's market. My mom and I shop and Peter walks laps with my dad. As we are trying to get his step count up per day. What Peter and I observe however is the Ritalin prescribed for my dad is making NO noticeable difference. 

In 2018, we took this photo at the Mattie Miracle Walk. The woman in orange is Marisa. We have known her since she was in high school. She got to know Mattie when he was battling cancer and then after his death, she has run our bake sale at all of our events. She has become part of the family. 

This afternoon, Peter and I attended Marisa's wedding social. She got married in September in Italy, but hosted this lovely event for all her local friends and family. She got the best weather day, as this venue had an incredible rooftop terrace. Of course to leave home to attend this was a feat, but we were committed to making this happen. Having a few hours to ourselves was very needed, as I am very strung out and exhausted.

The drinks and hors d'oeuvres were excellent. They made a specialty drink for the wedding called an aperol spritzer. It was orange and to me it screamed out Mattie Miracle. Given that we only knew the bride and her family, it produced less stress on us to chat and make small talk with people. Instead, we sat outside, got fresh air, ate, and tried to unwind. A novel concept, as I never have a meal in peace anymore. 

The happy couple, Marisa and Andrew. We wish them a world of happiness.

Of course my lens is forever skewed. As I told Peter, I no longer look at happy events the same way. As I too was like this at one time. Getting married, with life in front of me. However, life had a different plan for us. It is hard not to feel bitter, isolated, and very different from the rest of the world. I certainly can now feel happy for others and at the same acknowledge my own path. I couldn't do this years ago, but despite this growth in myself, the outcome for me is still the same. 

Friday, November 11, 2022

Friday, November 11, 2022

Tonight's picture was taken in November of 2005. That day we took Mattie to The National Geographic museum. A museum we never went to before and haven't visited since. I will never forget the visit, the fun Mattie had and upon exiting the Museum, I snapped these photos!

Quote of the day: In the garden of memory, in the palace of dreams ... that is where you and I shall meet. ~ Lewis Carroll

This afternoon, I took my mom to meet a new neurologist. She did not like the first neurologist I took her to, so I worked hard to find a second opinion. When I tell you it took over three months to get today's appointment, I am not kidding. Mind you my mom completed a battery of testing with the first neurologist, so I really thought today he would look at this testing and help us along with a plan of care. No such luck. Naturally he wants to do his own testing. Different tests altogether, and this doctor is far more evidence based. This doesn't surprise me, as he is the director of a parkinsonism clinic at a major hospital in our area. 

However, despite this doctor being competent, that is not the first thing you notice about him. What you immediately notice is he is conversational. He talked with us, is very humorous, positive, and has a good spirit of hope about him. I told him he reminded me of the famous doctor the movie Patch Adams was based on. Typically I have to admit, I find most neurologists, odd. They have trouble connecting and relating to human beings. He is the exact opposite. I have a long history with neurologists, so this isn't my first rodeo. 

He spent an hour talking with us. Correct, you read this right..... 60 minutes. How many doctors spend this time with you? I am sure there is a clinical purpose for this, but this fellow caught my attention today. He is collaborative and wants to respect our wishes regarding care and treatment. It turns out his whole office staff is lovely and they told me today that the doctor is an amazing person and boss. He always wants to help, has a great deal of positivity, and his personality is contagious. 

Any case, my mom's situation isn't clear cut. So we agreed to more testing: 1) a DaTScan, 2) a blood test, and 3) a cognitive test to focus on memory loss. 

Some elements of the standard in-office neurologic exam for Parkinson's Disease (PD) are very characteristic, such as:

• decreased blink rate
• small handwriting, that decreases in size as the writing continues
• small, movements of the hands and the feet, worse on one side,
• characteristic stiffness of the arms and the legs, worse on one side,
• stooped posture
• decreased arm swing on one side while walking
• the characteristic walk in which the whole foot is planted flat at one time – instead of the heel being planted on the ground first
• the characteristic way of turning by taking multiple steps and not pivoting

If there are enough of these features present during an exam, with or without a rest tremor, especially if coupled with a history of certain non-motor symptoms that typically appear before the movement symptoms of PD, such as constipation, loss of smell and REM behavior sleep disorder, the doctor will feel sure of the diagnosis. We had lots of questions today about smell and sense of smell. 

In 2011, the Food and Drug Administration (FDA) approved an imaging test to help diagnose PD. In this test, a radioactive tracer, also known as DaTscan, is injected into the blood, where it circulates around the body and makes its way into the brain. It attaches itself to the dopamine transporter, a molecule found on dopamine neurons. Several hours after the tracer has been injected, special imaging equipment scans the head to detect the presence of DaTscan. This is a three hour long test, that I need to schedule for my mom on Monday. 

PET scans and DaT/SPECT scans examine the “function” of the brain rather than its anatomy. This is an important point because unlike in strokes and tumors, the brain anatomy of a Parkinson’s disease patient is largely normal. These scans can show changes in brain chemistry, such as a decrease in dopamine, which identify Parkinson’s disease and other kinds of parkinsonism.

The doctor showed up sample scans. People with PD will typically have a smaller signal in a part of the brain called the striatum, where the ends of the dopamine neurons are meant to be. Here is a normal scan on the left, which would indicate a healthy dopamine system, next to an abnormal scan on the right, which would indicate an unhealthy dopamine system.

In addition, we discussed memory loss. My mom really has no insight on her memory. However, today, she listened to my concerns and agreed to further testing. The doctor is encouraging her to go on a memory loss medication (based on testing from first neurologist), similar to the drug my dad takes. However, the doctor explained that this drug tends to have a better response in Parkinson's patients than Alzheimer's patients. Nonetheless, we decided to hold off on taking this until we get further data. 

Specifically the doctor discussed the Rivastigmine patch. So the drug he is proposing she take isn't an oral med, like my dad's. Rivastigmine will not cure these diseases (Parkinson's and Alzheimer's) and it will not stop these diseases from getting worse. However, rivastigmine can improve thinking ability in some patients with these diseases.

In Alzheimer's disease, many chemical changes take place in the brain. One of the earliest and biggest changes is that there is a decrease in a chemical called acetylcholine (ACh). ACh helps the brain to work properly. Rivastigmine is an acetylcholinesterase inhibitor. It slows the breakdown of ACh, so it can build up and have a greater effect. However, as Alzheimer's disease gets worse, there will be less and less ACh, so rivastigmine may not work as well.

After this long doctor's appointment, I drove back home to pick up my dad. I then drove them to Alexandria, VA to pick up our Foundation's holiday letter at the printing company. I think I almost have all the necessary parts put together to start this mass mailing. If I only had a workable database right now to print mailing labels. I am working on that, and given my current state of affairs, everything takes me longer. Once chores were done, I took my parent's out to dinner. My dad really prefers eating out than at home. I have no idea why, but it is definitely part of his pathology. I have to admit, today I was exhausted. But eating with him a show. There is no rest for me. I jumped up to the bathroom with him twice while at the restaurant, and I promise to spare you that details. In between bathroom runs, I manage his eating pace (so he doesn't choke) and his need for tissues. Somehow food and chewing triggers his nose to drip. It drips year round and he doesn't have a cold. Given his nose is like a hose, I carry small garbage bags with me, to capture his tissues. As I don't feel it is anyone else's responsibility to handle his dirty tissues. All I know is I deserve a break, but won't be getting one anytime soon. 

Thursday, November 10, 2022

Thursday, November 10, 2022

Tonight's picture was taken in November of 2006. Mattie was four years old and the boys were dressed up to celebrate Peter's birthday. I love the fall colors in this photo and it should be no surprise why we chose orange to be the official Mattie Miracle Foundation color. It was a color that Mattie loved wearing! Not to mention the fact that Mattie LOVED eating anything made from pumpkin. When I reflect on our birthdays now without Mattie around, they are very different. Not just different because we are older, and there is the natural process of not making a big deal over birthdays. But without Mattie around, things are just not the same. We look at the world through a clouded lens. 

Quote of the day: Grief can derange even the strongest and most disciplined of minds. ~ George R.R. Martin

This morning two friends came over to work with Peter and me on opening up boxes and sorting all donated items, so we could provide equal donations to all three hospitals that we support (MedStar Georgetown, Children's Hospital at Sinai, and the National Institutes of Health). This is what our room initially looked like. 

Certainly Peter and I could do the sorting and organizing ourselves, but it was lovely to have adult conversation in the house. It was like a breath of fresh air. However, I must admit no matter how comfortable I am with the people visiting, I always feel stressed out because I am balancing my parents and their needs. 

I would say in about an hour, things were organized. This is SO SO different from our Fall Item Drive pre-COVID. Back then we would get thousands of pounds of candy and sorting it was like watching an episode of I Love Lucy! 

This stack of items is going to MedStar Georgetown, in Washington, DC. 

This stack of items is going to Children's Hospital at Sinai in Baltimore, MD. 

This stack of items is going to the National Institutes of Health. It is my hope that next week we can load up the car and begin donating the items to support our Snack & Item Carts at all three hospitals. 

Wednesday, November 9, 2022

Wednesday, November 9, 2022

Tonight's picture was taken in November of 2006. Mattie was four years old and was in preschool. Every Monday, Mattie's class went across the street to visit older adults in a nursing care facility. You can see Mattie sitting on the floor with an orange shirt. It wasn't easy walking the class across the way to the facility and then trying to host an activity so that the kids and older adults could interact with each other. This connection fascinated me, which was why I volunteered every Monday in Mattie's classroom to help the teachers escort the children to the nursing home as well as help execute whatever activity the teachers had planned. I am so glad I made the time to do this, as these young little bodies brought great joy and life to these seniors and I appreciated observing what they learned from each other. 

Quote of the day: You’ll get over it.’ It’s the clichés that cause the trouble. To lose someone you love is to alter your life forever. You don’t get over it because ‘it” is the person you loved. The pain stops, there are new people, but the gap never closes. How could it? The particularness of someone who mattered enough to grieve over is not made anodyne by death. This hole in my heart is in the shape of you and no-one else can fit it. Why would I want them to? ~ Jeanette Winterson

I had an ophthalmology appointment this morning. This is not something I enjoy doing, but given that I have narrow angle glaucoma, I make sure to do my routine exams. My dad had his memory care program today, so I only had my mom in tow. I admit I do not like my eyes dilated, because it takes me a while to see normally again. Given that I am responsible for my mom and I was driving around, I felt extra cautious today. 

Once I got back home, my dad was there, as Peter picked him up from the center. A former student of mine called me yesterday and she left me a detailed message saying that she needed to talk with me. My life is complicated now and returning phone calls isn't easy. But I did call her and spoke with her for about an hour. However, if anyone could see what I was doing while also juggling this phone call, one would laugh. Midway in my phone call, I could hear my dad's recliner moving (it operates on a remote control), meaning that he had to get up to go to the bathroom. I literally put the phone on mute, and I helped him to the bathroom, changed him, and picked up poop, all while on the phone. I would love a minute to myself, where I am not juggling needs and demands. It would be fantastic to just be able to focus on one thing at a time, but this isn't my life. 

It is very easy to feel overwhelmed, upset, disgusted, and angry! Some days I can feel all these things at once. When my student (who is older than me) asked how I was managing my situation, my answer was.... one day at a time. Life has a way of bringing things upon you that you never asked for, you don't always get choices. The only thing you can control is your reaction to what is thrust upon you. 

My student is dealing with health issues and also multiple losses. She shared what close friends said to her about her grieving process. One person went as far as to say, "you shouldn't cry. It serves no purpose. You just move on." You can imagine how I felt about this sentiment and given that I have heard a variation of this theme, I know exactly how to respond. Such trite comments are platitudes, delivered to make the giver feel better, with no real regard to how the recipient may take such heartless words. As I told my student today, words do and can indeed hurt. They remain with us and though there are no visual scars, there are emotional ones and yes the wrong words can sever relationships. Which is what has happened with her. 

Tuesday, November 8, 2022

Tuesday, November 8, 2022 -- Mattie died 684 weeks ago today. 

Tonight's picture was taken in November of 2007. Mattie was five years old. That day we took Mattie to Roosevelt Island to walk around and explore. Along his journey he came across a crinkly hedgeapple (which he was holding). Naturally he picked it up and we took it home. We later cut into it, to examine it closer. It had a beautiful lemony fragrance. This photo was taken with Georgetown University in the background. It is somewhat eerie knowing that just a year later, Mattie was on that exact campus receiving cancer treatment. 

Quote of the day: I miss her all the time. I know in my head that she has gone. The only difference is that I am getting used to the pain. It's like discovering a great hole in the ground. To begin with, you forget it's there and keep falling in. After a while, it's still there, but you learn to walk round it. ~ Rachel Joyce

Since Friday is Veteran's Day and my dad's program is closed that day, his make up day was today. I would say for the most part my dad doesn't enjoy going to this program. He does carry a small notebook and pen in his shirt pocket so he can make notes about his day. However, he rarely uses it while at the center. The only thing he records is the type of lunch he eats! If you ask him what he did during his four hour stay at the center, he has absolutely no idea. The scary part about this is I have the daily schedule the center follows for his classroom. Even when I read off items listed on the schedule to him, (like a travel discussion of Puerto Rico) he has NO idea what I am talking about. He is adamant that they did not talk about Puerto Rico today. I have confronted the center staff about this because at first I thought they weren't following the schedule. I just have trouble accepting that my dad's memory is that bad! Surely if I could jog his memory for the daily schedule, he would be able to report back out about his day! But the answer to this is NO, NO, and NO. 

On some level I wonder what is a memory issue and what is a behavioral issue. Each day that he goes to the memory center, I review the schedule activities before he leaves the house. We then tell him to record one activity he did in his notebook. Despite reminding him, he never does it. Trust me when I say that I make a fuss over this request, I am not kidding, and I can't imagine that given how I pepper him about this three times a week, that he can't remember even one activity from the day. It is either his memory is that bad (which I know it is), or its a combination of that, with being totally disengaged and disconnected from others around him. 

I have had the opportunity to talk with other people caring for parents with dementia. I assumed they are all like my dad! I am learning they are not. Many people with dementia do like socializing to some extent and getting involved in activities. All I know is our daily existence is quite depressing, as it is very difficult being around people who are very self absorbed and in my dad's case would rather sleep the day away, and only be awake for meals. 

While my dad was at the center this morning, I sat down and started writing Mattie Miracle's November newsletter. I have a busy November, ahead because the Foundation has its item drive (in which items need organization and then be delivered), our Foundation has a mass mailing to loyal supporters, and I also must complete my continuing education credits in order to maintain my professional counseling license. This has been quite a year for me, and it has been impossible to accrue hours given all I am balancing. I have to admit there are times I say.... the hell with it! I just can't take on one more thing. But as Peter goes away to Boston for Thanksgiving, I am hoping to develop a night pattern, after my parents go to bed, of working on my CEUs. I just can't do it during the daytime hours, as I have no peace and quiet, and certainly no time to concentrate. Wish me luck!

Monday, November 7, 2022

Monday, November 7, 2022

Tonight's picture was taken in November of 2007. Mattie was five years old and was in kindergarten. That day in school, Mattie lost a tooth. But my recollection was Mattie's tooth came out suddenly and it hit his friend, Tim. Mattie's teacher captured the tooth and taped it to this piece of paper. You can see Mattie's two eyes peeping out from behind the paper. 

Quote of the day: Here’s what I know: death abducts the dying, but grief steals from those left behind. ~ Katherine Owen

After I got my dad up, washed, dressed, and had breakfast, he then went to his memory care program. I had about an hour to myself to do some work before I had to take my mom to her physical therapy appointment. I constantly feel stressed out because I can't get a solitary thing done. I am trying to work on our end of the year mass mailing and it requires a lot of time and organization. An hour did not cut it today, and in fact when the hour was up, I felt so angry that I had to stop working. As I had just begun to get something done. But it is the story of my life now as a caregiver. I can't keep up with personal emails, phone calls, and work. It is my hope that people in my life understand. Yet not everyone reads the blog nor understands what I juggle in a given day. 

After my mom's therapy appointment, I took her to CVS, the bank, we did other chores and we got tea and snack out before returning home. It was a glorious weather day today and for a brief moment, I got outside with Peter and Sunny. 

It is hard to believe that Sunny is 11 and on chemo. He is a very happy and loving dog. He has been a part of our lives since 2016, and he has added such joy and love into our lives. 

Sunday, November 6, 2022

Sunday, November 6, 2022

Tonight's picture was taken in November of 2007. That day I took Mattie to visit Peter at his office. Mattie took over Peter's white board and began drawing. As you can see Mattie drew a sun and a tree. Of course there was always a vehicle involved. But a tell tale sign of a Mattie picture was the sun. Which was why the sun became part of Mattie Miracle's logo.

Quote of the day: Grief changes shape, but it never ends. ~ Keanu Reeves

After cleaning up the breakfast dishes, I sat down to do brain games with my dad. Given that his doctor wants him to read, I have been trying to work with him on reading comprehension. The book I am using is at the 5th grade level. Not because my dad has trouble reading words, he can. But he retains very little information and can't process and put information together. So in essence the 5th grade reading level is very challenging for him. For example, today's passage (which involves about 8 paragraphs of information) focused on a young girl visiting the zoo with her parents and brother. While there the girl expressed interest in animals and how she'd love to be around them all day. The father suggested that his daughter talk to the zookeeper, a couple of feet away, to learn more about this job. So the family approached the zookeeper and the remainder of the passage, involved information the zookeeper shared with the young girl. The zookeeper discussed how she has a degree in zoology and that zookeepers do not teach the animals to do tricks. Zoo allow animals to behave like they would in their natural habitats. Also the purpose of doing tricks is for entertainment and that isn't the mission of the zoo. 

One of the reading comprehension questions was why don't zookeepers train animals to do tricks? A simple question, but for my dad, it was impossible. All he kept saying was that tricks were not in the zookeeper's job description. The more I kept explaining why tricks weren't taught by zookeepers, the more confused he got. I honestly thought I was going to put my head through the wall. No matter how easy and step by step I made the explanation, it did not matter. This truly gives me a greater understanding for his processing problem and memory issue. 

However with my dad it is very hard to tease out what is a cognitive problem and what is sheer disinterest. My dad is basically disinterested in about 90% of daily activities. The only thing he focuses on is food and basic needs. However our world is made up of more than eating and toileting. Unfortunately, my world revolves around these hourly needs.

This morning a teacher from Carderock Springs Elementary School in Maryland came to our home and delivered us three boxes of unopened candy. A very generous donation. The accumulation of items is significant and my hope is to organize it this week. 

Meanwhile, in between dealing with my parents, I am desperately trying to work on the Foundation's mass mailing. This mass mailing is one of our major fundraisers each year. Slowly we are working through the pieces, but now I am trying to clean up our database for this mailing. This is always a heavy lift every year. You would think I would have created a better system by now, but unfortunately now I am lucky I can keep my head above water.