Saturday, April 23, 2022

Saturday, April 23, 2022

Tonight's picture was taken on Easter of 2004. Mattie was two years old and that day we took him to the National Arboretum. We loved to go there around Mattie's birthday because they had an azalea garden in bloom. My joke to Mattie was that these flowers bloomed in honor of his birthday. In typical Mattie fashion, he collected something along his journey that day..... two dandelions. This was a signature Mattie move, because when ever we went out walking, a piece of nature always came back with us. 

Quote of the day: The simple act of caring is heroic. ~ Edward Albert

The morning started with my usual chaos. I got my dad up. He proceeded to say that he had to go to the bathroom, but was just going to go in the shower rather use the toilet. I of course said.... NO! While using the toilet, he has a habit or putting his hands in the bowl before he flushes. He literally will take a wad of toilet paper and dip it into dirty toilet water, to wash himself with it. No matter how many times I tell him NOT to do this, it falls on deaf ears. Instead he tries to rationalize with me that the water in the toilet is clean. Wrong on many counts! 

It is a glorious weather day, so Sunny and I went on a big walk. Sunny deals with fall and winter weather much better than spring and summer. The heat slows him down, so we have to take periodic breaks and I always bring water with me for him. 

During the weekends, I typically take my mom to open houses. Yes I just bought a house, but I like to know what is around me and how much things are selling for. Certainly while buying our house, I got a great education. Sometimes I like to see open houses to see how they are decorated or what is being featured. So far, I can't say I have come away with any ideas. Today we saw a property with a water feature, it was right on a lake. The views were incredible. But it was a very unique property and not a good match for most buyers. 

Because I am tired of seeing my dad sleeping in his chair by day when he is home, I brought him in the car with us as we were touring houses. He never got out of the car, but at least it was a diversion. As I feel sleeping begets more sleeping and it isn't good stimulation for his mind or body. After his reaction to the COVID shot yesterday, the only way to go from that was up. It was a gastrointestinal nightmare Friday and it would be wonderful to have a day free of chores, meeting needs, and providing care. Not going to happen, but it would be nice. 

Friday, April 22, 2022

Friday, April 22, 2022

Tonight's picture was taken in April of 2005. That weekend we took Mattie to Bunnyland at Butler's Orchard in Maryland. We loved this farm and appreciated their fall and spring festivals. At Bunnyland, Mattie got to hunt for Easter eggs, go on a wagon ride, and participate in many other fun activities. It was a time to remember. I am so glad that Peter snapped a photo of us in front of this bunny made of hay. 

Quote of the day: Caregiving often calls us to lean into love we didn’t know possible. ~ Tia Walker

My day started at the hospital taking a cardiac CT. My doctor ordered this test because I have fluctuating cholesterol levels from year to year, and due to my parents cardiac issues, she wanted me tested now. Of course to get to the hospital at 9:45am, I had to get up early to manage my dad. I got him up, showered, dressed, and having breakfast before I left. I really did not give much thought about this test, until I was in the machine. 

The tech was lovely! However, as soon as the machine went on, I remembered all the CT scans with Mattie. He was deathly afraid of this device. I remember I would tell him the machine was like a race track. You can actually see something rotating around the ring, and if you try to imagine a mini race car speeding around you, it does help pass the time. Or it did with Mattie. In either case while in the machine, I remembered the racing car story I used to tell Mattie. I went through that narrative in my head, but I also reflected on a graver one. After all, it was doing a CT scan of Mattie lungs, that we learned that his cancer was in all of his limbs. Something we weren't prepared to find out and frankly any time you do an assessment, just about anything can be discovered. Life can change instantly with just ONE TEST. I literally had to calm myself down while in this machine, because I have to remind myself that not every test produces a death sentence. It takes a lot of discipline not to fly off the handle with testing, given my experiences with Mattie. 

In any case, a cardiac CT scan for coronary calcium is a non-invasive way of obtaining information about the presence, location and extent of calcified plaque in the coronary arteries—the vessels that supply oxygen-containing blood to the heart muscle. Calcified plaque results when there is a build-up of fat and other substances under the inner layer of the artery. This material can calcify which signals the presence of atherosclerosis, a disease of the vessel wall, also called coronary artery disease (CAD). People with this disease have an increased risk for heart attacks. In addition, over time, progression of plaque build up can narrow the arteries or even close off blood flow to the heart. The result may be chest pain or a heart attack.

Because calcium is a marker of CAD, the amount of calcium detected on a cardiac CT scan is a helpful prognostic tool. The findings on cardiac CT are expressed as a calcium score. Thankfully my calcium score was ZERO! Which indicates no calcification within the coronary arteries. The chance of having a heart attack over the next two to five years is very low under these circumstances. One blessing for the week or year!

When I got home from the hospital, I answered a few emails and then took Sunny for a walk. After the walk, I took my parents out to lunch. They are both under the weather today from their second COVID booster shot. My mom feels exhausted and my dad has an extreme bout of diarrhea. I have been changing him all day. Finally tonight I gave up, and administered Imodium. I use this rarely with my dad, as Imodium caused him to get an impacted colon, which required hospitalization in 2020. But I am afraid he will get dehydrated otherwise, especially since he is on a diuretic. 

Along my walk with Sunny today, I snapped a photo of my neighbor's cherry trees. They are incredible. 

Check out this fox. He was staring at us while we were walking. If I let Sunny off his leash, he would have given that fox a work out. 

Peter snapped a photo of my boy outside in the sunshine and enjoying our backyard. Peter has been working very hard in the backyard and he is slowly transforming it. To me it is as beautiful as a park. 

Peter knows I love canna lilies. So he planted bulbs around the property. They are starting to shoot up, and to me this is an official start of spring. 

Thursday, April 21, 2022

Thursday, April 21, 2022

Tonight's picture was taken in April of 2005. Mattie was three years old. I will never forget picking Mattie up from preschool that day and taking him to the mall. Mattie was uncertain as to whether he wanted to go near this huge bunny, but he decided to give it a try. I absolutely love this photo! I think in Mattie's lifetime I only took him twice for such formal photos... once with Santa and this one with the Easter Bunny. Nonetheless, I love it! Check out Mattie's eyes. Guess who Mattie was looking at? NOT the photographer.... but me!

Quote of the day: There are only four kinds of people in the world. Those who have been caregivers. Those who are currently caregivers. Those who will be caregivers, and those who will need a caregiver. ~ Rosalyn Carter

I love this quote! I love it so much that I started chapter one of my dissertation with it years ago! Certainly there are all kinds of caregivers out there. It is a broad term, but Mrs. Carter was referring to caregivers of older adults. It was a busy day here. My dad's nurse came at 10am to evaluate him and has decided to officially discharge him next Thursday. After the nurse visit, my dad's occupation therapist worked with him for an hour. Once those visits were done, I got my parents in the car and we headed to CVS for their fourth COVID shot (second booster). There doctor recommended it for them, and it has been six months since their first booster. 

After getting shots, I ran to the dry cleaner, to get gas, and then to Mattie Miracle's post office box. Given that is is fundraising season, I like to check the box on a more regular basis, as I never know what may be coming in. Given that I am balancing a full-time (and then some) job at home, it truly is amazing that I can continue to keep the Foundation afloat. 

Of course my main concern is our upcoming Virtual Walk. Typically in the past, I am busy by day working my networks and all sorts of channels, to raise money. Unfortunately now I have little to NO time to get still for even an hour to get work accomplished. Today, money came into the Foundation and bolstered our May 15th event's thermometer.

Today's thermometer reads $31,407. We have a way to go, but at least I am seeing movement. I invite you to check out our Walk Website and get involved (register, donate, or purchase $5 raffle tickets). 

Managing both of my parents needs requires great fortitude, time, and a great deal of patience. My dad will ask the same question over and over. I mean over and over minutes apart! It can be mind numbing. Honestly some days I feel like I am losing my mind. I love when he tells me that people at the memory care center are very disabled, because he feels they don't know where they are! Ironically neither does my dad, yet he isn't aware of this. Most of the participants at my dad's memory center look like they are physically functioning. However, you just have to look at their blank faces, to recognize immediately that they all have cognitive issues.  

I take one day at a time, that is the only way I can manage. On top of all of this, Sunny went in for 12 hours of testing today. It appears that there are no masses in his lungs, which is positive news. But we await feedback from the oncologist and data from his all day blood draws assessing the functioning of the adrenal glands. Think good thoughts for Sunny!

Wednesday, April 20, 2022

Wednesday, April 20, 2022

Tonight's picture was taken in April of 2009. I absolutely LOVE this photo. I remember taking it. Mattie did not like to be examined at all. But Dr. Gonzales understood how to capture Mattie's attention. She saw he was interested in her pager. So instead of taking it away from him, she got it out and walked through what to do with it and Mattie was fascinated and engaged. In turn Mattie agreed to comply with an exam. The psychology behind this snapshot in time was beyond memorable. Dr. Gonzales knew that Mattie was bright, inquisitive, and spunky. Not unlike her. She was well versed in dealing with Mattie's type, and I would say throughout Mattie's cancer journey, she was one of the doctors who understood our family's situation the best. 

Quote of the day: At the end of the day, I'm a person. I have feelings. I get tired. I get sad. ~ Summer Walker

When Mattie was in treatment, we had the opportunity to meet a nurse who was beginning her career. In all reality, if I were Jenny, I may have run the other way when seeing us. But instead, she embraced our family and really wanted to learn from Mattie and us. Even in my dazed and confused state back then, I could tell that Jenny was a special person. Now 13 years later, guess what? Jenny is still part of our lives. Do you know she has registered for EVERY Mattie Miracle Walk since 2010. To me this is remarkable. Jenny wrote to me today, and said:

I will never ever forget the lessons I learned as both a nurse and a human when I took care of Mattie and the fierce loyalty and advocacy you displayed for him shaped my nursing career. I find myself coming up with reasons to bring his name up in conversation, especially with new nurses talking about adjustments for families when life-altering diagnoses are delivered to patients and families. I'm so glad you have been able to continue the Walk for Mattie and your organization and for as long as I'm able and as long as you hold it, I will be a participant! 

All I can say is Jenny's message perked up my day and perhaps week. It means so much that Mattie's life is remembered, that he influenced Jenny's career, and that she is one of our legacy makers who continues to walk this journey with us. I can't think of a better gift to give a bereaved parent. I am thankful that Jenny wrote and shared her insights with me. Words do matter and they can change our lives. 

My dad continues with his feelings of depression and sadness. When we picked him up today, he went right back to the same mantra as yesterday. He isn't blind, he isn't paralyzed, and doesn't have a disability. He is only forgetful. I am not sure if he is trying to convince himself or us. Either case, I have alerted the memory care center to what I have been contending with over the last two days. They plan on giving him another Mini-Mental State Examination (MMSE), which is a set of 11 questions to check for cognitive impairment (problems with thinking, communication, understanding and memory). In addition, the social work team will administer a geriatric depression screening. 

My dad may have depressive feelings, but he doesn't have the means or where with all to follow through on them. I have been trying to understand what triggered this recent emoting! My conclusion is that the center forces him to think and use his brain. Something he refuses to do at home. Whenever I ask him to do brain games with me, I get a lot of push back, and I am told that I push him too hard. Instead, at home my dad prefers to be what my mom calls, "a potted plant." Literally he can sleep 12 hour days, if we aren't on his case. At the memory care center he can't do this. There are activities every minute of the day. Therefore he is asked to think and participate. However, at the end of the day, my dad is completely unable to tell us even one thing he does while at the center. 

I believe this has caused him great FRUSTRATION. So now I have given him a notebook which he can slip in his pocket. I have told him to take notes throughout the day. He actually did it today, because I think he was disappointed in himself the day before. So though I am saddened he is depressed, I think he needed to feel slightly uncomfortable in order for him to change his behavior and to re-engage with the world, and work on it! Frankly I think he and my mom have been in GREAT denial about his cognitive decline. At the memory care center the reality is plain and simple. This is hard to come to terms with and I imagine people with dementia face these emotions much earlier on in their trajectory than my dad. But delayed reaction or not, we are dealing with them, and I am working hard on redirecting his thinking and trying to have him focus on the positive. The positive being that there is a memory care center so close to our home, that at the center they can work on engaging his mind, and with some strategies he has the opportunity to read cues that can remind him of his day. 

Tuesday, April 19, 2022

Tuesday, April 19, 2022 -- Mattie died 655 weeks ago today. 

Tonight's picture was taken in April of 2009. I think this photo is hysterical. Despite the fact that Mattie was wearing a cast on his right leg (which was heavy), he still had great flexibility and spirit. Mattie did not want his photo taken. Yet he was still intrigued with what I was doing, and as you can see one eye came peeping through. 

Quote of the day: Motivation is what gets you started. Habit is what keeps you going. ~ Jim Ryun

I woke up at 5:30am. I assure you this is NOT my hour. In fact, I am not a morning person at all. But since my parents moved in, the latest I can sleep is until 6:30am. If I don't get up at that hour, everything falls apart around me. 

I got up at this ridiculous hour because I had to drop my dad off at the memory care center at 9am, so I could get my mom to her stress test by 9:45am. I did it, but all I can say is wow! It is 7:30pm, and I feel like I donated pints of blood. I am worn out, feeling exhausted, and my sinus congestion is back. I am sure resting would help, but that just doesn't happen here. Tonight's quote I think is perfect for caregivers. We get started because we are motivated (most likely by love or commitment), but over time, the numerous tasks we take on become habit. We get used to working and working, at a burnout pace. 

My mom's stress test was performed at the same place my dad had his test in February. We even had the same two techs today, who are lovely. My dad's stress test took over four hours, my mom's was under three hours. She got good results today and I am happy I could support her through this. But everything takes time and planning on my part, as I know the stress test has three parts, and after part two, you are allowed to eat (since she was unable to eat after midnight). So I brought my mom snacks and hot chocolate, as I knew she wouldn't like what was offered to her by the clinic. 

After the test, we drove back home. I walked Sunny for over an hour is blustery wind, and then jumped in the car to pick up my dad and take them both to lunch. When we picked up my dad, he was emoting! Trust me, he DOESN'T do this! Like ever!!! Today he let us know that he is frustrated and depressed. In fact, he said, "today was a very sad and depressing day." It is hard for him to articulate why. But all he could say was he isn't paralyzed, he isn't blind, etc. However, he realizes he is forgetful, yet he doesn't understand that his cognitive issues are indeed a form of disability. I can't tell if he is frustrated with himself or what. But then let us know that he views himself as a burden and it would be better if he weren't alive. 

Naturally my mom and I addressed those feelings, but truly I wanted to know what triggered them! My dad isn't a reflective person and therefore what he was expressing caught our attention.

I have given my dad a mini notebook to record thoughts and activities he is involved in throughout the day. Within the notebook was this paper that had a drawing of flowers in a pitcher. If you look closely there is a circle drawn on the left hand side and in it my dad wrote....

My reaction: I hate this. I am not blind or disabled, just forgetful. 

My dad at lunch. You wouldn't guess that this photo was taken on the same day as the statements above. Mind you while at the restaurant, my dad had two bowel movements and I was jumping up and down. 

I tried to explain to my dad that there are things he can do to help himself. Like implement the memory strategies his speech therapist taught him. Which means writing things down to remember them and to trigger memories. Also in addition to notes, I am trying to impress upon him the connection between mind and body. A body that is stagnant, has a way of impacting one's cognition. I desperately want him to do a ten minute walking routine twice a day. A routine that was recommended to him both in the hospital and by his home therapists. However, he is difficult and will push back at me, not wanting to comply. Typically now I tell him that his lack of activity has no consequence on me. That ultimately he is hurting himself. He says he wants to get better and stronger, but when you ask him how he could do his part to achieve this, he has no idea. Of course I know with dementia there is NO getting better. The best we can hope for his holding onto what he has, but this requires work. Work on his part, because I know that on my part I am working the job of ten people on any given day. 

Monday, April 18, 2022

Monday, April 18, 2022

Tonight's picture was taken on Easter of 2006. That day we took Mattie to his favorite restaurant for brunch. I honestly had NO idea the restaurant was going to have the Easter Bunny visit tables. When Mattie first saw this large bunny, he was scared! He never saw a giant bunny like this before. I explained that this was a friendly bunny and was going to give treats. Basically that there was nothing to be afraid of. Mattie went from fear to this.... allowing the bunny next to him for a photo. When I was Mattie's age, my mom also took me to see the Easter Bunny at a local department store. When I saw this giant bunny, I hide under a table! So I totally understood where Mattie was coming from. 

Quote of the day: Run when you can, walk if you have to, crawl if you must; just never give up. ~ Dean Karnazes

Yesterday we went with my parents for dinner at the same restaurant featured above. Just like in 2006, a bunny came around to say hello! Peter snapped a photo of us together. 

A photo of my ham. 

Today was quite the day! I mean a real winner. My mom was in a state. Her tax accountant sent her an email last night at 10:30pm. Not a good hour to send her a message. I had already gone to my bedroom, so I had no idea of the chaos unfolding. Needless to say the accountant said she owed tax money and it had to be sent in by today. I love the ONE NIGHT notice! By the time I saw my mom this morning, she looked like death warmed over. 

Though I wanted to help her, I told her she had to wait, as I had to get my dad up, showered, dressed, having breakfast and to the memory care day program. I honestly feel like I am on a WICKED treadmill. While having breakfast, my mom started talking about the issues we are having with the accountant and some of the historical accounting decisions my dad made that she doesn't agree with. Hearing all of this made my dad anxious and the next thing I knew, he pooped in his pants. Mind you I just showered him. So I had to clean him up and get him to the memory center by 10am. 

Once I dropped him off, I came back home to help my mom. Thirty minutes later I jumped back in the car to the memory center to meet with my dad's new physical therapist. This fellow is very nice, but because my dad's in-home therapy ends next week, this new therapy company can't start until he is discharged from the other company's service. So once again, next week I will have to return to the center to do an official intake. After this meeting, I drove back home, and hopped on a conference call with lawyers, as I have been called as an expert witness for a civil law suit with the DC licensure board. After that call, I got back into the car and picked up my dad and brought him home. 

Then I drove my parents to lunch. At lunch my dad pooped for a third time today. Honestly I am never sitting still. I literally take him right into the women's room, and I don't bat an eyelash. When I got home at 5:30pm, Sunny desperately wanted a walk, as I ignored him all day. So I took him for a walk and then came home and dealt with more issues.  

Tomorrow won't be any better. I asked the memory care center if my dad could come there tomorrow, because I am taking my mom for a four hour stress test. Helping her with my dad in tow, would be very challenging. So in order to make the timing work, I will be getting up at 5am so I can manage both of their needs. 

Sunday, April 17, 2022

Sunday, April 17, 2022

Tonight's picture was taken in March of 2009. Mattie received this cute bunny hat for Easter from Team Mattie. As you can see Mattie was not in a photo kind of mood. None the less, he did put the hat on his head, let me snap the photo, but without showing his eyes. One would think that being home between cancer treatments would be great. For us it was never great! Mattie was typically not feeling well and was contending with depression, anxiety, and trauma. This was challenging to balance alone, without a team of healthcare providers to lend support. Which was most likely why Mattie never batted an eyelash when he knew he had to return to the hospital. I believe he was comfortable at the hospital and it provided him mental and emotional stimulation and support that home just couldn't do. 

Quote of the day: All the great things are simple, and many can be expressed in a single word: freedom, justice, honor, duty, mercy, hope. ~ Winston Churchill

It was another busy morning. Typically my parents like fruit and cereal for breakfast, but today I changed it up. I made hard boiled eggs. Specifically because I wanted to do an egg taste test. We bought farm fresh eggs yesterday at the local farmer's market. I compared them with store bought eggs this morning. Frankly none of us could taste the difference. The only thing I noticed was a difference in color and texture, with the farm fresh eggs having a more tender and soft yolk. 

I jumped from one task after the other today, and I should mention I have a winner of a migraine as well. It was so bad that I felt dizzy and nauseous this morning and went down to the kitchen at 6:30am to get my rescue medication. Fortunately I am used to working through this pain, otherwise my household would come to a standstill.

While working at the computer today to finalize the Foundation's April newsletter, I had a cat companion.... Miss Indie. 

 

Meanwhile Peter has been transforming our backyard. He has been working very hard at weeding, mulching, digging trenches so water doesn't collect, and of course planting and creating these wonderful flower pot compositions. 

I bought three tomato plants at the farmer's market yesterday. I am hoping we have some luck with them. 

Pops of color are being planted. 

The previous owner of the house left us a few lovely flower pots. He also left us a lot of junk which we had to get rid of, but that is another conversation. Peter planted a lavender plant into this blue pot, and when it starts to bloom, it should look lovely. Did you know bugs do not like lavender? It is nature's natural insecticide!