Saturday, July 23, 2022

Saturday, July 23, 2022

Tonight's picture was taken on July 23, 2008, hard to believe this was 14 years ago today. Today is a day I will never forget, as it was the day our lives changed forever. It was on this day that Mattie was diagnosed with cancer. It may have been July, but Mattie requested Christmas lights outside, and we made it happen that day! It is ironic how a request that we would not have been granted under ordinary times, became immediately accomplished under extraordinary life altering circumstances. 

Quote of the day: The person who follows the crowd will usually go no further than the crowd. The person who walks alone is likely to find himself in places no one has ever seen before. ~ Albert Einstein

I met my friends in Alexandria, VA today to celebrate my birthday. I do have amazing friends and I am grateful for their support. All of whom where around when Mattie was diagnosed with cancer. I am grateful for the lunch, cards, gifts, and toiletries for our Snack & Item carts!

I think it is possible to appreciate the gathering and yet be miserable at the same time. Not because of the people, but because of my life's circumstances. On top of which is I am extremely tired and trying to pull it together so I could leave my parents for several hours was challenging. I put in a full day before ever getting to the restaurant today. 

I am pictured with Jane and Ann here. Both women I met through Mattie's preschool and we have been friends since 2005. 

The group..... Standing from left to right are: Junko, Mary, Carolyn, Debbie, Catherine, Jane and Ann

Sitting next to me is Peggy. 

The ladies by the Potomac River.

Standing from left to right: Jane, Carolyn, Catherine, Mary and Junko

Sitting from left to right: Peggy, me, Debbie, and Ann

I have to say that it would be easy to have a mental breakdown from all I am balancing. Sometimes group settings set me off. Not because of the people in the group per se, but more because of the internal dialogue going through my head. A dialogue that reminds me that I am different, that I live a life quite apart from others, and therefore this dialogue as a result separates me from those that I am close to. I am aware of this in myself, and yet at the same time can't seem to prevent the wicked cycle from happening. But in all honesty, for now, I will just have to accept these feelings as they are and move on. Otherwise, I will beat myself up and feel guilty and I can't handle or process one more thing right now. 

At lunch, I had a side bar conversation with my friend Junko. This is a very natural person for me to chat with, because Junko would come to the hospital when Mattie was in treatment and she and I would talk, have lunch together (as she spoiled me with all sorts of tasty lunches that she brought with her), and she would even massage my neck. All our nurses knew Junko because they were touched by her kindness toward me. So while others while chatting today, Junko and I were crying. Sometimes it helps to know that people around me understand my daily stress on such a deep level. 

Meanwhile, Peter was juggling my parents alone this afternoon. Peter knows the chaos, but I have a feeling he missed me in tow. As I am the orchestra leader of the show.

Our wonderful server, Cheryl, text messaged me a photo of my three having dinner, while I was out with my friends. She and I exchanged photos today. I shared my luncheon photo and she shared a photo of my family. Cheryl's son is a childhood cancer survivor and she has been taking care of my family since my parent's moved here. I am very fond of her and in a way has become a friend. We text message each other photos and stay in touch throughout the week. 

Friday, July 22, 2022

Friday, July 22, 2022

Tonight's picture was taken in July of 2008, literally days before Mattie was diagnosed with cancer. We took him to Roosevelt Island to do our typical walk about. If you notice closely, Mattie found some sticks along the way and were carrying them with us. I will never forget this particular walk, because what did we see? Wild turkey walking along the path. It was a first! In fact it was the first and very last time we ever saw wild turkey on the Island. Of course, weeks later, I interpreted that sighting as an omen to come..... Mattie having cancer. To this day, I still don't like seeing wild turkey, as it reminds me of this moment in time.

Quote of the day: No matter who you are, what you've accomplished, what your financial situation is—when you're dealing with a parent with Alzheimer's, you yourself feel helpless. The parent can't work, can't live alone, and is totally dependent, like a toddler. As the disease unfolds, you don't know what to expect. ~ Maria Shriver

There is a great deal of truth to tonight's quote. As caring for people with dementia is a lot like caring for children. I always say that Mattie was my best teacher and I am NOT kidding. When you care for children you learn the art of balancing multiple tasks at one time, and coordinating schedules, driving around doing errands and the list goes on. I feel fortunate to have had these Mattie experiences because without them I am NOT sure I would be able to balance the care of my parents effectively now. I say that because on any given day, I am juggling many, many things. Thankfully I have had years to work on the skills needed to do what I am doing now. 

Last night I had the opportunity to go out without my parents. I left them alone for three hours and when I got home, I found my dad totally asleep on his recliner and my mom worrying about how to get my dad upstairs. Fortunately I reminded her NOT to take him upstairs unless I was home, and she did listen. As she is in no sort of shape to be able to support and help him. On Saturday, I am going out with a group of friends to celebrate my birthday. Naturally I am honored to even have any friends right now, mainly because I am in no shape at this point to be a friend. I am thankful so many friends understand this, and yet I always have mixed feelings going out in groups. It isn't a phobia, as much as it is a simple fear. 

Since Mattie was diagnosed, died, and now that I am a full time caregiver of my parents, I have and continue to view myself as DIFFERENT. I am not the norm and not that I don't know this reality, I do, but it becomes even more evident when in a group of women. Women who are productive and get things accomplished. Yet my greatest accomplishment some days is I have contained bowel movements! Not the best conversation to have at a luncheon. But yet this is my life and though it may appear that I have chosen this (so I should just suck it up and deal with it), I did not expect my parents to both have dementia and physical issues at the same time. Caregiving for one is hard, for two, it becomes a big WOW!

The main issue that I find people don't understand about my situation is why don't I have caregivers?! As they feel this would make everything so much easier for me. I believe that in theory caregivers help, but the reality doesn't always work out this way (remember I have insights from caring for my maternal grandmother who had a stroke and from my clinical hours helping family caregivers). It just adds another layer and complexity to the mix. Right now my parents are not stable. Or at least my dad is somewhat, but my mom's situation is tenuous at best and I really need answers from the neurologist this week on how to help her moving forward. Therefore, until I have a plan, I am not relinquishing any sort of control at home. From an outsider's standpoint, I know people view me as head strong and controlling. I don't care to hear this, but on the other hand I know my situation and the issues I am facing better than anyone. So when my mind is made up, no one is going to change it. 

I was text messaging Karen today, my lifelong friend. We met in 6th grade and have been friends ever since. Karen knew my maternal grandmother and in a text today, she said..."you are a caregiver, just like your grandmother. I'm just sad you have had to use that part of yourself so much." My grandmother was the ultimate caregiver! So reading Karen's comments today, paid me the highest compliment possible.

Thursday, July 21, 2022

Thursday, July 21, 2022

Tonight's picture was taken in July of 2003. This was Mattie's first trip to the beach. In fact, it was his first dip into the Atlantic Ocean. During that trip, it was Mattie's first and last, as he found the ocean very intimidating. Nonetheless, the key with Mattie was doing things when he was ready. It would have been very easy to never go back to the beach given his first reaction, but I am glad we kept trying, because in time Mattie love it! He particularly loved building and creating in the sand. 

Quote of the day: Release in your mind who your loved one used to be and accept who they are today. ~ J. Rusnak

Today was one of those days in which I was driving non-stop! I first took my parents to the hospital, because my dad had his first speech therapy session. It was a 90 minute evaluation and assessment by a wonderful speech therapist. As soon as I got to the hospital, my mom needed to use the bathroom. So I had my dad sit in the hospital atrium, while we waited. When she finally joined us, I got her a hot tea, so she could sit for 90 minutes. Before taking my dad up for therapy, I went to the radiology film library to get a copy of my mom's brain MRI on a disk. I read the radiology report and frankly I have more questions than answers. I am hoping the neurologist can assist us next week and make some sense out of what I am reading. 

The speech therapist is lovely and included me in the session. Smart woman, and understands the challenges caregivers of dementia patients face. Despite being in her 20s, I found her very sensitive to the situation. Throughout the session, it seemed NOVEL to my dad that he has dementia. In fact, in his mind, he doesn't have dementia and thought the therapist today was going to tell him as such. She reminded him that he was already diagnosed with dementia and her job wasn't to diagnose him but to help him develop strategies in order to have a better quality of life. No matter how many times we explained this to him, he kept insisting...... 'but I don't have dementia!'

The therapist administered part of the ALFA (Assessment of Language-Related Functional Activities) today. Particularly the parts of the test that focus on Understanding Medicine Labels, Using a Calendar, and Reading Instructions. In truth he did fairly well on this assessment and with that he said... 'see I don't have dementia.' Of course the therapist explained that this assessment wasn't for that purpose. Instead it assesses what strategies work for him to remember things. I use many word prompts and cues at home, and after today's assessment I see that I am spot on! These work for him. 

In any case, it is now 11:30pm, and I am still up and working on a template for my dad's daily notebook. As she wants him to record things he considers memorable throughout the day. I have done this before and the only person frustrated from this exercise is typically me. I am hoping it goes better now. Since he does respond to visual cues, I would love it for him to get use to turning to his notebook for reminders. My fear however is that I really don't think that my dad cares to remember anymore. Not so much from apathy, I just don't think he deems this as important. 

After therapy I took my parents out for an early dinner. I did this because tonight I was going to my friend's house to welcome her cousin to town. This is a yearly event that I try not to miss. However, this year is anything but normal for me. Tonight was my first night out of the house without my parents in 9 months. I left them for three hours, and that was only possible because all of their needs were met beforehand.

Tonight's crew! We were at my friend Ann's home and JP, her cousin, was sitting right next to me. 

Wednesday, July 20, 2022

Wednesday, July 20, 2022

Tonight's picture was taken in July of 2003. This was one of Mattie's first kiddie pools on our deck. He loved it and he especially liked it when Peter went in the water with him. Peter was a good sport and he always made the time to do activities with Mattie. 

Quote of the day: You can’t explain what it’s like to mourn someone who is still alive unless you’ve experienced it firsthand. ~ Jessica Seay-Soto

What's with the missing watch? Well I spent 60 minutes or MORE this morning trying to find my mom's misplaced wristwatch. Mind you I just finished getting my dad ready, he had breakfast and he was out the door to his memory care center. This in theory should be my four hours to get things done. FORGET it. This has become the time I need to focus on my mom and trust me she needs a ton of support. Yesterday's saga was resolving credit card issues and today's was the missing watch. I literally looked everywhere in the house for the watch. I finally gave up. I then took her out to Nordstrom Rack to shop and while in the store, she reached into her pants pocket. Out came the wristwatch. I was truly besides myself! As I don't know how you can have this in your pocket and NOT feel it. It is not just my mom's forgetfulness that is an issue. She manufacturers crises and then expects us to believe what she is saying! For example, several weeks ago she insisted there was an election primary and she HAD to go and vote. I received nothing in the mail about this election and could find nothing on-line about our district. Yet she insisted I was wrong and that she got communication in the mail. Finally I asked to see what she got in the mail, and indeed the communication had NOTHING to do with an election. This is just one of many, many examples. It is emotionally taxing and very, very time consuming. 

I received this photo from the National Institutes of Health today. I purchased around $1,400 worth of items to stock our snack and item cart at the clinical center. Hard to believe that only 7 boxes could have contents that are worth so much! 

Meanwhile my birthday pile is growing at home. I truly appreciate these generous gifts that will stock our carts!

Though Miss Indie is Peter's cat in all intensive purposes, she does occasionally enjoy my company and every night, she escorts me upstairs to bed. She sits on my side of the bed and then expects a greeting and pets! 

Tuesday, July 19, 2022

Tuesday, July 19, 2022 -- Mattie died 668 weeks ago today.

Tonight's picture was taken in July of 2003. This was our first family trip to the beach. Mattie was a year old. If you look closely at Mattie's face, he was NOT a happy camper. However, in time Mattie came to love and appreciate this beautiful barrier island. We do not have many photos of us together, which is why I appreciate this one.

Quote of the day: You treat a disease, you win, you lose. You treat a person, I guarantee you, you'll win - no matter what the outcome. ~ Patch Adams

I got up at 6am today in order to get myself together, breakfast made, and my dad up, showered, dressed, and downstairs for breakfast. My dad had a 9:45am follow up appointment with his internist. In fact, we see this doctor every three months, because my dad has significant enough issues that he requires this kind of monitoring. 

At the appointment today, my dad was deemed more lucid! Of course the questions the doctor asked were.... What month is it? What day is it? What year are we in? Whose the president? 

Honestly these questions are old hat and in my book tell you LITTLE about how well you can function in your day to day life. He maybe oriented to time, place, and person (possibly), but if you ask him what he did a minute ago? He can't tell you! If you ask him did he had a bowel movement today? He has no idea! What did you eat today? NO clue! The list goes on, and without any working memory, life is very challenging from minute to minute. 

Any case, the doctor went on a tangent today regarding being incontinent. In fact I felt like he was practically giving my dad a warning, which I did not care for. The warning was.... that urine and bowel movements belong in the toilet. He told my dad that this is the only place he should be going! He also then mentioned that his mom is 90 years old and his sister has been her caregiver for 5 years. Now after 5 years, the sister has decided to put the mom in a nursing home because she is tired of cleaning up urine and poop. Clearly this conversation served NO purpose for my dad! Fortunately with my dad he won't remember it ever took place, which is a blessing! But I certainly do! The only one deciding whether my dad needs an institution is me. Given all that I balance on a given day, the least of my issues is that my dad goes to the bathroom in his depends. Can you see why I nickname this doctor, DOPEY! He continues to live up to his name. 

Because my mom has an MRI of her brain this evening, I decided to take my parents out to lunch. Unfortunately our usual servers were off today. So we trained in a new one. This poor guy had no idea what hit him. As everything we order has modifications! 

My dad likes a lot of balsamic dressing and the chef wanted to charge my dad 59cents extra for additional cup of vinegar. I told the waiter to alert the manager that we are regulars and I don't expect to be paying extra for vinegar. Thankfully the manager over-rode the chef! 

The highlight of my day was seeing packages arrive for my birthday. Friends have asked what I wanted for my birthday. Honestly other than a vacation, which isn't going to happen, the thing that interests me the most is our Foundation's snack carts! So I created a private wish list for friends to access, and voila..... packages are arriving. A BIG THANK YOU for friends who understand what I am balancing, who don't judge, but instead appreciate the effort caregiving is taking day in and out. 

Monday, July 18, 2022

Monday, July 18, 2022

Tonight's picture was taken in July of 2005. This was Mattie's third summer vacation at the beach. By that time, it was old hat to him. He adjusted to the sound of the ocean and learned to appreciate it as well as the beautiful sand. Each evening we would come out to look for dolphins and other things in the water. Peter captured that special moment in time. 

Quote of the day: Your memory is the glue that binds your life together; everything you are today is because of your amazing memory. You are a data collecting being, and your memory is where your life is lived. ~  Kevin Horsley

If memory is where you live your life, as this quote suggests, then what happens to people with dementia? How can memory then serve as "the glue that binds your life together?" The answer is you can't! I am sure losing one's memory is scary to the person with dementia, but I assure you there are a whole host of feelings for the family caregiver. Yesterday we showed my dad photos of places/houses he has lived. Do you know he remembered NONE of it! NOTHING. As if none of these things ever happen. Not only does my dad have issues with short term memory, he also has little to no long term memory. He is like a blank slate. It is truly a very sad commentary. 

My dad has never been a big conversationalist, even pre-dementia. He was the quiet one in his marriage, the one who as he said....."gained more by listening!" Given his social history, it is easy to assume that he has nothing to say, doesn't want to participate in the conversation, and so forth. But what I notice now is he just doesn't want to hear the noise. Conversation is noise in his mind and even though friends call him now, he doesn't want to talk with them. Instead, my mom and I do the talking. This desire to disengage brings me pause. At first I interpreted it the same way I did for Mattie. Noise and conversation brought great anxiety and stress to Mattie. Which is why over time we rarely had people visit us, because it troubled Mattie and he did not like my attention diverted from him. 

With my dad I don't view this turning away from conversation the same way. For my dad, he lives within his very confused mind. He is happier in this confusion than having to use his brain to connect with others. For Mattie, turning away from conversation was a choice. For my dad, I think his disease is turning him away from conversation without his permission. His brain shuts down and when this happens, he can't process or hear what is around him. Even at times when I have to raise my voice to capture his attention, he will start screaming at me. He will aggressively tell me that I am always yelling at him and then proceeds to look like a toddler having a tantrum. 

After my dad went to his memory care center this morning, my goal was to do Foundation work. Forget it. My mom needed help with credit card payments, issues with insurance and so forth. It took hours of my time. I took her out to lunch and there we had a conversation about how she needs a lot of support and what transpired this morning prevented me for getting anything done. In addition to discussing this, we also talked about driving. My mom now fully accepts that she can no longer drive. I did not make that decision for her, she did. It is the wise decision and she is beginning to understand that she truly can't function doing anything outside the house without support. This is a hard reality to face, but isn't she lucky that she doesn't have to face this reality alone? Unlike me who will have to do this one day (assuming I live that long) alone. 

Sunday, July 17, 2022

Sunday, July 17, 2022

Tonight's picture was taken in July of 2003. Mattie was one year old and it was his first trip to the beach. That year Mattie spent a lot of time inside or on the deck with a hose. As you can see Mattie was on the couch with a book. This book was given to me by one of my mentor's in my Ph.D. program. The book's title was Goodnight Moon. This had to be Mattie's favorite story! Peter and I knew it so well that we could recite it by heart! 

Quote of the day: The worst part of holding the memories is not the pain. It’s the loneliness of it. Memories need to be shared. ~ Lois Lowry

Yesterday our friends emailed us and encouraged us to watch the TV this morning to see Mattie's friend, Sara Catherine on the news. Mattie went to preschool with Sara Catherine and we go back a long way. I remember Sara Catherine as a little 4 year old. It is hard to believe that she is 20 now. 

Today happens to be national ice cream day! Sounds good to me! Every day we should celebrate this tasty frozen treat. In any case, Fox News went to Jake's Ice Cream store in Falls Church, VA, to highlight the day. The beauty of this segment was it highlighted a family run business who employs young adults with disabilities. Sara Catherine has been working at Jake's for a year and Peter and I visited her when she first started. 

To all our local readers, if you are looking for a good ice cream shop and want to support a great cause, check out Jake's! Named after the owner's nephew who has cerebral palsy. Check out the news article (and link) entitled, Virginia ice cream shop proudly employs people with disabilities. Jake's Ice Cream shop in Falls Church, Virginia, serves up opportunities for those with special needs............. 

https://www.foxnews.com/lifestyle/virginia-ice-cream-shop-employs-people-disabilities

Our mornings are nuts, truly! But despite all I am balancing if a friend asks me to do something, I try to do it. So while getting showered and dressed, I had the TV on in our bedroom. I am thankful that the segment came on at a time I could watch it and record it on my phone. 

Mattie and Sara Catherine (in blue) during winter of 2006 at their preschool. There are so many memories from this preschool and it was at this school that I believe amazing friendships were established for both Mattie and me. To this day, some of my closest friends came from this moment in time. Never to be forgotten.