Saturday, June 3, 2023

Saturday, June 3, 2023

Tonight's picture was taken in June of 2004. Mattie was two years old! That day, we went to visit Peter's maternal grandmother, who was in the hospital. Gladys, like me, loved food! So on our journey to Connecticut, I packed all sorts of goodies and a few of Mattie's train themed paper plates. Gladys had a wonderful spirit about her and she truly enjoyed meeting Mattie!

Quote of the day: When you're at the end of your rope, tie a knot and hold on. ~ Theodore Roosevelt

Today did not go how I would have expected! Though I have learned in my house, having no expectations is just a safer plan. My dad's physical therapist came over this morning. Upon entering, she started discussing my dad's decline with me. Of course in her words.... she "doesn't see a decline." Which isn't surprising to me for two reasons. One, she sees my dad for only one hour in the morning (twice a week). The mornings are when my dad has the most energy. Second, my dad is more likely to comply with exercise requests from a stranger than he is with me. So other than me, my mom, and Peter, I am not sure anyone else is truly qualified to identify my dad's decline. I am with him all the time and I am his full-time caregiver. Therefore, I notice and experience everything. 

To make a long story short, the therapist spoke to me for thirty minutes. Meaning she chewed up half of my dad's therapy time. I did not ask to converse with her, she just did. So I would have hoped she would have stayed longer to give my dad his full hour of exercise. What truly bothered me is this evening, the therapist sent me an email with "resources." For the fun of it, I clicked on each resource, as I want to keep an open mind. What people forget is that caregiving for older adults is my research area of interest and expertise. In addition, caregiving is NOT a new role for me. 

Any case, back to the email of resources. One was a listing of caregivers in the Northern Virginia area that provides care for older adults within one's home. Though I will keep this list, I know all too well that if I should select home care, I would work with an agency, like we did in Los Angeles. There are many advantages and safeguards using an agency. The second resource link was to respite care in my area. So I clicked on it, and it discussed how the county will provide up to six hours A MONTH of respite care! That to me is hysterical! Fortunately my dad goes to a memory day care program, and if I took full advantage of it, he could go there 8 hours a day, five days a week. 

The third and final link was to a tai chi class for my mom. I have discussed many classes and options with my mom and I have hit a brick wall each time. In addition, my mom can no longer do or go anywhere independently. I would need to go and participate with her. So in my opinion before making suggestions to a family caregiver, it would behoove one to first fully understand the situation, the family's preferences and to discuss what the family has already researched or is participating in!

I fully admit that I am NOT the easiest person to provide support and suggestions to, and in so many cases, I feel as if people do not understand the knowledge and insights I have on my parents and the fact that I have and continue to give great thought (which I do not always express) on how to manage their care. 

Meanwhile, this afternoon we took my parents out for lunch. Another nightmare. This is the second time this week that while eating, I had to take my dad to the bathroom three times. It is simply infuriating as he insists he has to go to the bathroom, and then once he gets there, he doesn't go. My dad is absolutely fixated on the bathroom. Eating with my dad, whether at home or out, is a nightmare of grand proportion. 

The new doctor we have seen this week, who I now refer to as Dr. Messy, increased the dosage on my dad's memory meds. I have noticed since this happened, my dad has developed constipation. Though I am not in love with his daily bouts of diarrhea, managing my dad with constipation is like living hell on earth. To tonight I am playing the laxative game in hopes that he goes, otherwise, Sunday will be a torturous day for all of us. 

I took a brief walk through Peter's garden! This is his first zucchini!

Peter's first butternut squash!

Peppers!

Allium, the flower from garlic. 

Vine ripe tomatoes!

Cherry tomatoes!

Friday, June 2, 2023

Friday, June 2, 2023

Tonight's picture was taken in May of 2006. It was Mother's Day and we went to one of Mattie's favorite restaurants. I am so glad that the server took a photo of us, as we have so few photos of the three of us together! 

Quote of the day: Life imposes things on you that you can’t control, but you still have the choice of how you’re going to live through this. ~ Celine Dion

Peter has been going through his closet to determine what business attire he has that will fit. He has many upcoming out of state meetings and is giving his wardrobe serious thought. 

This photo had me laughing. Peter was showing me how much weight he has lost! The pants he tried on here, he wore at Mattie's funeral in 2009. With each suit Peter tried on today, we concluded NONE of them work. 

Meanwhile, Mattie Miracle ordered $2,000 worth of supplies for our Snack and Item Cart at the Clinical Center of NIH. Part of the mother load was delivered yesterday! Check out some of the full drawers. This one contains mac and cheese, soup, and oatmeal. 

A drawer filled with popcorn. Mind you I ordered items that are POPULAR for this treatment center. 

Flipflops and socks! When you live at a hospital, having these items are truly gifts. As it helps walking around, especially in the bathrooms, and it is typically freezing, so socks are necessary!

All sorts of toiletries, including toiletry kits!

All of these items were actually donated to the Cart during our April Item Drive. We are grateful for our supporters who help us keep the Carts stocked. 

You would be surprised, how necessary these items are! When you are caring for a child in the hospital, the focus is your child, not on yourself. Which is why these items support families and their basic needs. I remember when I was living in the hospital, receiving a candy bar felt like I won the lottery. I say this because living in a hospital removes all control and freedoms that we as humans grow to value and desire.  

This is the only Cart we have that features feminine products. I haven't received a request for such items at our other locations. But like I said, Mattie Miracle tries to fulfill the specific requests and needs at each treatment center. 

Thursday, June 1, 2023

Thursday, June 1, 2023

Tonight's picture was taken in May of 2006. I remember snapping this photo at Mattie's preschool playground. That day, Mattie was creating art with his friend Nancy. Ironically, while out with my parents today, we ran into my friend Jane and her family having lunch. Jane is Nancy's mom, and I got to chat with Nancy, who will be graduating from college next year. It is so surreal to see Mattie's classmates as young adults and almost finished with college. To me, Mattie remains forever 7 and after talking with Nancy today, I wondered..... what would Mattie be like if he were alive today?

Quote of the day: Each one of us has lived through some devastation, some loneliness, some weather superstorm or spiritual superstorm, when we look at each other we must say, I understand. I understand how you feel because I have been there myself. We must support each other and empathize with each other because each of us is more alike than we are unalike. ~ Maya Angelou

I would love to have one morning when I do not feel rushed, stressed, and frenetic. This wasn't that kind of morning unfortunately. While balancing my dad, the door bell was ringing and chaos was unfolding before my eyes. However, I had to plow through it all because I had to get my parents to my dad's doctor appointment this morning. Some of you may know that I have referred to my parent's former primary care doctor as DOPEY! Trust me he lived up to the nickname. We had a meeting today with the doctor who has taken over DOPEY's practice! I honestly had high hopes for this new interaction and truly I am looking for a doctor who understands the challenges of working with patients who have Alzheimer's and the plight of the family caregiver. I am telling you this because I went into today's appointment with an OPEN mind. 

When I walked into the office, the whole aesthetic or lack there of set me off. To me it was cramped, messy, and uninviting. The waiting area had a rug in it that looked like it needed to be set on fire. The waste paper basket in the waiting area was filled to the brim and the two women working behind the desk looked like it was there first day on the job. Not a good look for a practice that has been operational for twenty plus years. 

The doctor took us on time, and allowed all of us into an exam room. He had no problem with family participation, which was good. However, there was something about this doctor that just did not resonate with me. It wasn't any one thing, but just a feeling. You know either you click with a person or you don't! The one major red flag, which I confronted him about, was that he has NO nurse, NO physician assistant, or staff (other than admin). He even takes patient's blood himself! I was so taken aback by this that I said... I hope you never get sick? I said this partly in humor and partly to be serious. Even the healthiest of people catch colds, get sick, and can't work! So what happens to patients in this case? Not sure I really got an answer, other than he told me he is 54 years old (mind you he looked much older) and responds to all patient concerns 24/7! Unless he is superman, I don't know how that is possible. 

The doctor himself looked like a disheveled mess. He was wearing grey pants. Not hemmed and they did not fit him appropriately. Instead, he cuffed them up by hand at the bottom! His hair was a mess, his brown tie wasn't straight and did not match his outfit, and his shoes looked like they were falling apart. I remember reading research in graduate school about how patients judge their psychologist and physicians by their looks. Meaning the better put together the professional is, the more competent patients view them. I always made a mental note of this, but I try to judge people by my interactions with them, not so much on their looks. But in this case, I just couldn't get over his appearance and the state of his office. My conclusion is how you put yourself together and the way your office looks gives me some insight into him as a person. Detail oriented, cleanliness, and having a state of the art facility, are important qualities for me when picking a doctor (of course I value education, training, experience, and patient reviews too). Which leads me to question, how competent will this doctor actually be? 

Peter has a physical with this doctor next week, and I will be curious to hear his perspective. If Peter feels the same way I do, I will then be looking for a new practice to take my parents to because I believe having the right match with your primary care provider is crucial. On an aside, the doctor gave my dad a cognitive test for dementia while in the appointment. Honestly these tests make me NUTS! NUTS I TELL YOU! My dad may know it is 2023, that he is in the state of Virginia, and that it is warm outside. But what about his functional memory, his ability to perform tasks and live independently! My dad can't tell you whether he just ate a minute ago, he has no idea how to dress himself, he can't hold a conversation, and the list goes on. Yet the doctor gave him an 18/20 on the test and viewed him as doing well! Really? Maybe he should take my dad for a few hours and then I bet this would alter his impression of my dad right away. 

Wednesday, May 31, 2023

Wednesday, May 31, 2023

Tonight's picture was taken in May of 2006. Mattie was in his preschool classroom, and I had the opportunity to visit that day! The classroom had a loft in it and Mattie absolutely LOVED that space. In fact, he used to love using all sorts of colorful tape along the wooden railings. I remember the director of the preschool telling me that within the first two months of school, Mattie used about a year's supply of tape that the school had on hand! Get the picture on Mattie's intensity and persistence!

Quote of the day: The purpose of life is not to win. The purpose of life is to grow and to share. When you come to look back on all that you have done in life, you will get more satisfaction from the pleasure you brought to other people’s lives that you will from the times that you outdid and defeated them. ~ Harold Kushner

I got up at 5:15am today! I had to get up at that hour in order to manage and care for Sunny and Indie, to get myself ready, make breakfast, pack a snack for my mom, drop my dad off at his memory care center, and then drive into the city to take my mom to her hair and nail appointments. I am NOT a morning person! However, since my parents moved in, sleeping in until 7am, would now be considered a luxury! 

Before leaving the house today, I had my mom use the powder room and I ran upstairs to use the bathroom. I left my dad at the breakfast table, after confirming that he did not need to use the bathroom first. While I was upstairs, I could hear movement. When I got back down stairs, my dad was up and had wandered over to the powder room and was just standing outside the door. He knew my mom was in there but said nothing to her. She is in her own world and did not even realize my dad was up and outside the door. 

When I confronted my dad, I asked him if he had to go to the bathroom! After all I was trying to understand what he was doing up and outside the bathroom door. His response was "no!" He got up because he was' looking for a tissue.' I keep a box of tissues by his kitchen chair. So I was perplexed as to why he was wandering around looking for a tissue, when the box was in front of him, where I left him. To me this behavior was noteworthy, and it was the first real sign of wandering that I have seen. Typically my dad is physically lazy and very sedentary. So I have never worried about him moving around, but this morning was a red flag. 

On an aside, I learned this week that my long time hairstylist moved back to the region. She is now working at the salon I used to go to when I was a graduate student. Needless to say, I am going to see her next week, as I feel no one understands my hair like she does! Why should going to get my hair cut and returning to this salon be so exciting? For me it is always about the people, about the connections I share with others. To me this is symbolic of returning home, as the salon is a stone's step from where I used to live in the city. This reconnection will either go very well or very poorly, as I know they say you can never go home again. 

Tuesday, May 30, 2023

Tuesday, May 30, 2023 -- Mattie died 713 weeks ago today.

Tonight's picture was taken in May of 2006. It was Memorial Day weekend and we took Mattie to Pennsylvania to experience Sesame Place! A theme park for toddlers and young children. I had no idea that the park had all of these water themed attractions. Needless to say, Mattie had a swimsuit with us but we bought Peter one at the Park. Together they had a ball and I was happy being the family photographer. 

Quote of the day: Pain is always accompanied by emotion and meaning so that each pain is unique to the individual. The word pain is used to group together a class of combined sensory-emotional events. The class contains many different types of pain, each of which is a personal, unique experience for the person who suffers. ~ Patrick Wall

For over a week, I have been dealing with intense back and side pain. The back pain I have had before and I know it comes and goes, but the side pain gets me down. It can hit me all of a sudden and it feels like a butter knife is going through my rib cage. I assume it is muscular and in time it will dissipate. But dealing with physical pain on top of my already intense work load is a bit much!

I am worried about Sunny as well. He isn't acting like himself and is on a hunger strike. He can do that on occasion, especially while on chemotherapy. But it is his other behavior that troubles me, as he isn't interested in going outside and this afternoon when I came home, I couldn't find him in the house. He managed his way down to the basement. Sunny does go to the basement but only when we have storms. There were no storms today. 

It was my usual day of chaos. I got my dad up, washed, dressed, and downstairs for breakfast. I then took him to his memory care center. I then ran to the post office to mail off raffle items to our Foundation winners. Then came home, did more chores and got my mom in the car for her physical therapy appointment. 

When I picked my dad up this afternoon from his memory care center, I took him home first before going out to eat. Despite telling his memory care center to toilet him before they hand him over to me, they never do! Sure enough as soon as he walked in the door, he had to run to the bathroom and we made it just in time. Which is why I have learned that I can't just pick my dad up from the center and drive to a destination. That would be a big mistake. 

My dad was excited to go out to eat today. He was hungry and we were hopeful that he would actually eat. However, no such luck. We brought home most of his food. My mom is concerned about my dad and wants me to chat with the doctor about this on Thursday. I will, but I also do not want my dad to undergo testing. Mainly because I feel his lack of appetite is part of his dementia decline. We meet my parent's new primary care doctor on Thursday and my hope is he has more experience working with dementia patients than their last doctor, who I accurately referred to as DOPEY! It would be very helpful to have a doctor who will be supportive and work with us rather than one who comes up with ridiculous suggestions. 

The last time we saw DOPEY he suggested my dad do kegel exercises (Basically tighten the sphincter muscles as if you are stopping a bowel movement. While squeezing tightly, hold for a count of ten and then relax for a count of ten). These exercises are supposed to help with bowel control. All great and wonderful, if my dad was mentally intact. But between his dementia and his irritable bowel syndrome, the suggestion is more comical than helpful. I got a lot of this kind of inane advice!

Needless to say, coping with all of my parents symptoms and emotional feelings isn't for the meek. My mom gets upset at my dad because he is checked out, zoned out, and doesn't eat. My dad gets upset because my mom is picking on him, and here I am stuck in the middle managing it all.  

Monday, May 29, 2023

Monday, May 29, 2023

Tonight's picture was taken in May of 2006. That weekend we took Mattie to Pennsylvania, to visit Dutch Wonderland. On the way, we stopped at an incredible aquarium in New Jersey. I am so glad I had Mattie and Peter stop for a photo as I thought it was neat to be in one state and see another state across the water!

Quote of the day: Veterans are a symbol of what makes our nation great, and we must never forget all they have done to ensure our freedom. ~ Rodney Frelinghuysen

This morning started with one of Mattie's flower creations falling from the wall in our kitchen. Literally it crashed and when I tell you that glass broke in thousands of pieces and went everywhere, I am not kidding. I had Sunny in tow, so I had to secure him and then pick up all the pieces. I look at signs like this as messages or omens. 

Mattie created these flowers when he was in the hospital! I liked them so much that I kept them in a safe place. About five years after Mattie died, I began cleaning and sorting through things. It was at that point that I went to AC Moore and bought collage paper as a backdrop for the flowers. Since that point, these flowers have always hung in one of our kitchens. 

This is the creation that fell! The flower says.... Mattie... on it. Can you see why I thought this maybe a sign? Logically it fell most likely because of the change in humidity. We did not hang the flowers using a nail, but I wanted to use velcro designed for frames so that we did not put nails in the wall. Needless to say, when Peter gets back home, we will have to change the frames and put nails in the wall because I don't want this to happen again.

There are many Mattie creations in our kitchen. This is another collage I made years ago. Again, this was an artistic creation designed in the hospital. Not with his art therapists, but with a resident artist named Liz, who came to visit the children on a regular basis in the hospital. 

In addition to caring for my parents, Sunny hasn't been himself for the last two days. He vomited two days ago and then has been refusing food. I started him on a stronger anti-nausea med and an anti-diarrheal. I even cooked him scrambled eggs this morning and that went down right away. So I am hoping Sunny is turning a corner. But I am also aware of the fact that Sunny misses our time together and I can see that Sunny doesn't have the same spirit in him that he once did. This of course saddens and frustrates me that I can't do more. 

With regard to my mom, I truly DO NOT care that her scans showed no neurological issues. That maybe so, but clinically I see what I see and I am experiencing what I experience. She has a funny gait. She walks with her feet separated by a foot and a half, and shuffles along. If this were the only issue I faced with her, I could manage. But my mom is a bundle. Not unlike my dad, her memory is failing. She loses track of days, forgets what we did the day before, and I find I have to constantly repeat what I say, as she will ask me the same question over and over again. To me her decline in one year's time is dramatic. I always wonder if this decline would have happened to her anyway, or is the decline a result of having cared for my dad as well as relocating her from California, a place she called home for over 30 years? I do not have the answer, but these are the questions that roll around in my mind. 

Peter sent me a photo of a bunny in his mom's garden. Mattie and I would have appreciated this sighting! Peter NOT so much. Of course if Sunny were there, this bunny would of had a run for his money!

Sunday, May 28, 2023

Sunday, May 28, 2023

Tonight's picture was taken in May of 2006. Mattie was thrilled to graduate from a toddler bed, to a full fledged regular twin bed. Mattie and I picked out sheets for his bed together and he selected the Bob the Builder theme! The frames for Mattie's bed were built by Peter's maternal grandfather. He constructed them for Peter's mom and sister when they were children. So these frames have sentimental value and Mattie liked knowing that he was the third generation to use these frames. 

Quote of the day: The two most powerful warriors are patience and time. ~ Leo Tolstoy

Today Peter attended our nephew, Will's graduation from Bates College. Peter drove up to Maine yesterday with his parents for this special occasion. I am glad that Peter could be there to represent us. 

How do I feel about not being able to go to Maine? Well I guess I have accepted the fact that I am going no where and will have no break in sight for the foreseeable future. Back in 2021, when my parents first moved in, I would have to say my adjustment was traumatic. Before my parents moved in, I thought my mom was higher functioning than she actually is. If my mom could help in some way with my dad's care, this could free me up to do things on occasion. But what I quickly learned within weeks of moving them in is that I did not have just one patient to care for, but TWO! Both of my parents have significant issues that require constant supervision and support. 

Peter snapped this photo today of the family while they were awaiting the graduation ceremony to take place. Sitting near to far are:

• Nat (our nephew)
• Sydney (our niece)
• Don (Peter's dad)
• Barbara (Peter's mom)
• Lisa (our sister in law)
• Chris (Peter's brother)

Left to right:

Sydney, Don, Will (the graduate), Barbara, and Nat

With Peter!

Peter sent me a photo of Mattie Moon in Boston! Mattie is always with us, when in doubt, we just look to the sky. Peter has attended all our nephews' and niece's graduations. Of course given the birth order, Mattie's graduation would be next year. Though we have been living with Mattie's death for 14 years now, milestone dates like a graduation, still are impossible for me to accept and wrap my head and heart around. 

The death of a Mattie has put me in a very unique club, and now adding full time caregiving in my home to parents with dementia, just once again reminds me...... I am different. My life is not like everyone else's and I continue to absorb a lot of sadness and loss on a daily basis.