Saturday, March 19, 2022

Saturday, March 19, 2022

Tonight's picture was taken in March of 2009. This was Mattie's first and last trip to the circus. Mattie received special tickets from the outpatient clinic to see the show in a private booth. Mattie loved the adventure and as you can see he got a clown's nose and several light up toys during intermission. It was an experience none of us will ever forget. 

Quote of the day: We do not have to become heroes overnight. Just a step at a time, meeting each thing that comes up, seeing it is not as dreadful as it appeared, discovering we have the strength to stare it down. ~ Eleanor Roosevelt

Since 2008, I have been using the same person to help clean our home. I was introduced to her by my neighbor, JP. Those of you reading the blog long-term, know that JP was the owner of JJ (our resident Jack Russell Terrier at our townhouse in Washington, DC). When Mattie was undergoing treatment for cancer, JP understood that I was rarely home and had no time to clean our home. So one day he sent over Blanca to clean for us and even paid for it. I couldn't deny that I needed the help back then as things were piling up all around me. Now 14 years later, Blanca is still in my life and helping me at the house. I know about her role as a mom and the ups and downs of raising her sons. Today I had the chance to catch up with her and it reminded me once again that being a parent may be one of the hardest jobs around. 

Because Blanca was coming at 9am, I had to wake up extra early, so I could shower and dress, make breakfast, and get my dad up and into the shower. I managed this juggling act but what is abundantly clear to me is my dad is declining rapidly. I mean not only physically, but most definitely cognitively. He can't remember what happened just a minute ago. Despite my best efforts to use prompts like calendars and a white board, he still is lost and confused at most points during the day.  

My escape was walking Sunny mid-day. Near our home is this wonderful walking trail, filled with trees and natural streams. Sunny and I both love it, and I appreciate having access to it without getting into a car. Honestly fresh air and greenery provide me some peace and short lived freedom. 

Our resident chipmunk is back! I haven't seen him all winter, but today he was hanging out by my office window. Sunny absolutely loves stalking this fellow. 

Later in the day, Peter and my dad sat outside on the porch. Even Sunny and Indie (under my dad's chair) joined them. While they were sitting outside, I was dealing with driving my mom back and forth into Washington, DC to get her hair and nails done. Keep in mind that it takes me about 45 minutes to get there, and that's just ONE WAY. 

I dropped her off at 1:30pm, and I asked the salon when she would be finished. They told me... 4:30pm. So at 3:45pm, I stopped what little work I could do at home, to go pick her up. I got to the salon at 4:30pm and I called my mom on her cell phone. She picked up her phone and she said her hair was getting blow dried. I told her I would park on a side street and she should call me when she was done. SHE NEVER DID. I called her at 5pm and at 5:15pm. No answer. By 5:20pm, I called the salon and they told me she had been waiting for me. Needless to say I was livid. As I waited an hour, parked in the car, and this kind of miscommunication sent me over the deep end. Especially when I have so much to catch up on. Needless to say I was screaming for 45 minutes all the way home. Not my finest hour.  

Though I thought I could get some sort of work done today, it did not happen. My dad started a diuretic and he had to go to the bathroom on the half hour. Since he can't do anything without supervision and support, that meant I was jumping around all afternoon. 

I end tonight's blog with a photo of Mattie Moon from our porch. May Mattie watch over me and give me strength. 

Friday, March 18, 2022

Friday, March 18, 2022

Tonight's picture was taken in March of 2009. You will see that I was holding up a LARGE salted pretzel. This was what Mattie craved that day and thanks to Team Mattie, he got it! I have no idea where one gets such a pretzel, but leave it to Team Mattie to have figured it out!

Quote of the day: When we long for life without difficulties, remind us that oaks grow strong in contrary winds and diamonds are made under pressure. ~ Peter Marshall

Tonight's quote makes me laugh! With this in mind, I should be an oak tree or a diamond by now. Like usual, I got up early, made breakfast and then went to get my dad up. As I was getting him up, I noticed he was soaked as was the bed. Turns out he may have tried to use the urinal at night and he couldn't figure it out. So instead, the urine went all over him, the sheets, pillows, blankets, and right through the mattress. I am telling you it was a royal smelly mess and given how tired I am, this was not a good way to start the day. 

I got my dad up, took his shirt off and helped him to the bathroom to wash his hands and begin to shave. While he was doing that, I striped the bed completely and brought a ton, and I mean a ton of laundry downstairs. I then brought upstairs this magic product I found years ago called Kids and Pets. It is the only product I have ever used that takes away the horrible smell of human and pet urine. I learned this the hard way when Mattie had cancer. Patches, our cat, wasn't happy with us and urinated all over our bed. No amount of washing took that smell away, until I found Kids and Pets. So between Peter and I, we sprayed down the mattress all day, had the windows open, and an industrial fan (we bought when our basement flooded) blowing over the mattress. We also did 8 loads of laundry from my parent's bed. Honestly this alone would make the day a nightmare. But it only gets better. 

Today was the first day my dad took a good shower. He was overdue, because I could smell him before I could see him. The hospital really did not do a good job with his hygiene. The hospital insisted I buy a shower chair, so I had to figure out how best to use this chair in the shower. I did it but my dad needs a lot more supervision now showering. 

I took my dad to see the physician's assistant (PA) today. It was the only appointment I could get yesterday. Fortunately he is seeing the cardiologist next Thursday. The PA was nice enough and she saw the logs of my dad's blood pressures that I created. The log covered the dates from March 3 through to today. Like me, she wasn't happy with these numbers. Even on medications, my dad's blood pressure is high. So we discussed different medication options and this took some time. She feels that my dad needs a diuretic since his legs and feet are retaining water, and she feels this will help his blood pressure. I am not wild about diuretics in general, but I am willing to try it for a week. Given that there maybe side effects from this, my dad needs a blood test next week to monitor the impact of the diuretic. 

Needless to say for the next several weeks, I will be driving back and forth from home to the cardiologist. After this appointment I took my parents out to lunch. They both like going out to lunch and it is the only outings we do, otherwise we are home bound. While at lunch, I was getting non-stop text messages from my dad's home health care agency. Upon discharge from the hospital, the recommendation was to get nursing, physical therapy, occupational therapy, and speech therapy from an in-home care agency. Apparently Medicare has a 48 hour rule, so because my dad was released from the hospital yesterday, the agency HAD TO SEE HIM TODAY. As these professionals do not work on Saturday and Sunday. So I literally had to shuttle my parents through lunch to get them home in time for these appointments. 

My dad saw the nurse and physical therapist today. I wanted to throttle the nurse. She basically gave me a lecture that the only things my dad should be leaving the house for are doctor appointments and religious reasons. Meaning that he shouldn't be going out to lunch, because if he is up to doing this, he shouldn't qualify for in-home care. HONESTLY!? My life is a nightmare. I do nothing other than manage my parent's needs. This nurse has absolutely NO REGARD for family caregivers or understanding the stresses I am under. I gave it to her and I have a feeling we will be reassigned another nurse from the agency. As we have a major personality clash. Things are hard enough, I don't need health care providers adding to my stress or judging me and my decisions. She needs to walk in my shoes and then we will talk. 

Thursday, March 17, 2022

Thursday, March 17, 2022

Tonight's picture was taken on St. Patrick's Day of 2009. Mattie received these cute shamrock glasses and headband from Team Mattie. We were headed that day to the outpatient clinic and before we left, Mattie got in the holiday spirit. 

Quote of the day: Courage isn’t having the strength to go on, it is going on when you don’t have the strength. ~ Napoleon Bonaparte

It was quite the day. We got to the hospital before 10am. When I walked into my dad's room he wasn't even out of bed. He was in the clothes he went to bed with and by his side was a speech therapist. She was working with him on a couple of brain games. Though I was happy someone was with him and stimulating his mind, I was annoyed that I got there so early when I am SO SO tired. 

Of course as soon as my dad saw me he was ready to go home. Which of course he couldn't do as he still had an IV in his arm and we had to go through the discharge process with his nurse. So while waiting for the nurse to pull paperwork together, I washed my dad's head, face, and hands, brushed his teeth and shaved him. I wasn't allowed to get him out of bed, so I literally put him at the edge of the bed and changed his clothes. What I did not realize was that NO ONE changed his depends since the day before. I learned that the hard way when I took my dad into the car. He smelled absolutely awful and was soaked. 

For the past couple of days, my dad's blood pressure has been very high. In the 180's to be exact. They added a new blood pressure med yesterday, but given that my dad's blood pressure was 181/81 upon discharge, my mom and I were concerned that the new med wasn't working. In my opinion it would be nice to have a cardiac patient stabilized before taking him home! I know, too much to ask! Regardless of our stated concerned he was discharged. I am NOT happy. 

In addition to not being happy, I am exhausted. I have a very short wick right now and the slightest stuff will make me start screaming. I packed up my dad's room and dealt with his non-stop questions. He was particularly focused on a walker in the room and wanted to take it home. Not happening as it belonged to the hospital. It is answering his non-stop questions when I am tired that really sends me over the deep end. 

We transferred my dad into the car and my mom wanted to go out to lunch. I am not sure where I found the inner strength for that, but I did it, and carted my dad along. However, before leaving the hospital parking lot I contacted the cardiology office to report the high blood pressure. Needless to say they want to see him tomorrow morning. Naturally! Not sure why the hospital did not understand our concerns. 

Of course coming home has its challenges. First of which was 6 prescriptions needed to be filled. Thankfully Peter did that, while I got my dad situated. I am now taking his blood pressure every two hours and recording it. Also funny as how many families actually own a blood pressure cuff? I love when hospitals send you home whether you are prepared or not. The hospital said that my dad's in home care team would be on the scene tomorrow to help me (since I know all about home care, I know darn well that these professionals don't stick around long enough to help with day to day issues). Of course in home care can't come on Friday because I have to take my dad to the cardiologist in the morning. Which means that I have to figure out transferring, up and down stairs, and a shower all on my own. Luckily I have these skills but not every person does. No regard for family and caregiver stress whatsoever! 

Wednesday, March 16, 2022

Wednesday, March 16, 2022

Tonight's picture was taken in March of 2005. Mattie was almost three years old. Each spring we would take him to Butler's Orchard in Maryland to attend their Bunnyland event. Mattie loved being outside, Easter egg hunting, the hayrides, the corn mazes, and as you can see the toy trackers. In fact Mattie loved anything with wheels. 

Quote of the day: No matter how much falls on us, we keep plowing ahead. That's the only way to keep the roads clear. ~ Greg Kincaid

My mom had a pulmonary function test this morning as well as a pulmonologist appointment. The tech who did her 40 minute long breathing test was wonderful. Greg was patient and had a good sense of humor. He knows that patients do not care for this procedural phone booth or breathing into a tube for minutes on end. The test consisted of four parts. The first part was the hardest for my mom, as it involved taking a deep breath and blowing it out for six seconds. In any case she survived the test and then we met with the doctor. His whole office experience is wonderful and everyone is very kind and patient. Though my mom has bronchiectasis (from a long standing lung infection she has as well as the result of a life threatening form of pneumonia she had in the 1990s), the doctor feels treating her condition now would do more harm than good. As he says the drugs produce GI issues, including nausea and vomiting. This would be too debilitating. So instead she will do daily breathing exercises and see the doctor every six months. 

Fortunately my mom's doctor is located within the hospital my dad is receiving treatment. So we visited him at around 1pm. By the time we got to him he was completely disoriented, had no idea what time of day it was, and also did not recall having therapy. We asked him about PT and OT, and he remembered NOTHING. I mean absolutely NOTHING. 

Fortunately both of my dad's therapists came to find us and updated us about his day. My dad's PT knows I have trouble with my dad's new stair climbing routine. Mainly because the routine has my dad walking down the stairs BACKWARDS! You read this correctly, backwards. It sounds completely counter institutive to me. 

The therapist says this is the safest way for an older adult to walk down stairs, because older adults typically have more of a hunch forward, therefore if you face down the stairs hunched over, you are more likely a fall risk. I get what he is saying, but I also know it is much harder for me to spot my dad when we are both walking down the stairs backward. In any case, I practiced it with the hospital staircase with both my dad and the therapist. I still say the hospital stairs are very different from my staircase at home, which is steeper and the treads are more narrow. 

As you can see when I got home tonight, I started practicing walking down the stairs backwards like instructed. I have to be able to do it since my dad won't remember anything. He simply follows instructions. 

I have to admit that I got very frustrated today and needed time away from my dad's room. His cognitive issues at times are beyond wearing, as he will ask the same question over and over again. There are things he gets fixated on and won't let them go. For example, the hospital gave him a plastic basin during his stay. He wanted to know if I was going to take this thing home. No matter how many times I answered him, he wouldn't let it go. So the only way to manage this was I had to pack the basin and take it home. 

In addition, for the last three days my dad thought it was discharge day. So the next mantra was "I am ready to go. When are we going?"

The dining service at the hospital gives patients an orchid with each meal. I have been saving them in water in my dad's room. Tonight I brought all of them home. Why? Because my dad was obsessed with the flowers and wanted to know when I was going to bring them home. When I am telling you he asked me about them at least 50 times, I am not joking. So again, the only strategy I have learned to end this repetitive cycle of questioning is to remove the object from his field of vision. 

We head to the hospital early tomorrow, as they say discharge is at 10am. It took a whole team to manage him in the hospital. It's only me managing him at home, so we shall see how this goes. 

Tuesday, March 15, 2022

Tuesday, March 15, 2022 -- Mattie died 650 weeks ago today.

Tonight's picture was taken in March of 2006. Mattie was around four years old and a live wire. As you can see he and Peter had transformed our living room space into a tinker toy city. Mattie absolutely LOVED building and creating with Legos and Tinker Toys which were the perfect tool for him. I remember soon after Mattie died, I was besides myself (for so many reasons!) because our home seemed so empty. There was no life, no activity, no noise, and NO MATTIE.

Quote of the day: Courage is not the absence of fear, but rather the judgment that something else is more important than fear. ~ Ambrose Redmoon

You maybe asking yourself.... WHAT IS THIS? This was what my dad's back looked like when he was transferred from the sixth floor down to the acute rehab unit. How on earth we could have gone home like this is besides me! I am SO glad I advocated for him to be placed in acute rehab in the hospital. Because this nightmare required wound care specialists. 

My dad's back looked burnt! It was his skin's reaction to adhesives they put on his back to prevent bed sores. Well he did not get a bed sore, but instead got this! No amount of lotion and ointment helped this. He needed oral prednisone to manage this, and he has been on the steroid since Saturday. Right now his dosage is being tapered down and his last pill will be on Friday. 

Meanwhile my mom and I got to the hospital at 9am. We were in family training from 9:30am to noon. We covered a lot of territory and I can say I liked each of his therapists very much. 

His PT (name: Ashraf) is excellent. I got to observe my dad being transferred from a wheelchair to bed and back to the wheelchair. We transferred him in and out of my car, he did seated exercises and I wrote them down so he can do them daily, and I got to see how he goes up and down stairs. We literally went to the hospital staircase and my dad went up and down. Here's the kicker, he is being taught to go down the stairs backwards. I am NOT a fan of this but the therapist said this is the safest way to go down stairs. I told him he is lucky he wasn't working with me because there is NO way I would go downstairs backwards. Psychologically it is a problem for me. 

Then we met with the Speech and Language Pathologist (name: Sam). Sam and I met before and she knew that I already do daily logs with my dad and keep a master calendar by his side of the table. However today we talked about setting up the same kind of station by my dad's recliner in the family room. So I am working on this and am even considering using a Boogie Board Tablet instead of a white board. What I have observed after these two weeks in the hospital is that my dad's memory is even worse than I thought. Which coincides with his anxiety. He constantly was checking the schedule and white board within the hospital room, which leads me to believe that without constant visual cues he is LOST (in terms of what day it is, what month it is, what time it is, what he is doing that day, etc). So I need to fix this at home. MORE WORK TO DO!

After speech therapy, we met with my dad's occupational therapist (name: Mike). Mike was also excellent and a lovely person. He told us about his traveling therapy experience all over the USA during COVID. I will spare you the details, as it isn't my story. But I was shocked by how badly he was treated. Mike worked with my dad to give him a shower today! So I got to observe that process too!

My mom took a CT scan of her lungs in February. Today the doctor contacted me to know that she has a problem. A major infection and we are seeing him tomorrow. Fortunately he is located in the hospital, so I first will go with my mom and then go visit my dad. 

My mom and I needed a break today. So I ordered lunch from the Cheesecake Factory and we ate it in the hospital's atrium. The atrium is a lovely sunlit space and it helped to get off the unit for a while. It was that kind of day..... so the chocolate came out!

Meanwhile Peter sent me this photo today! Sunny was basking in the 70 degree weather! Got to love this fellow!

Monday, March 14, 2022

Monday, March 14, 2022

Tonight's picture was taken in March of 2006. Mattie was about four years old. The flower pot sitting next to him was created by his preschool class. Each child in the classroom put their thumb print on it and their symbol next to it. Mattie's symbol that year was the Moon. I bought this flower pot at the school's auction and Mattie was very proud to have it in our living room. 

Quote of the day: For what it’s worth: It’s never too late to be whoever you want to be. I hope you live a life you’re proud of, and if you find you’re not, I hope you have the strength to start over again. ~ F. Scott Fitzgerald

My mom and I were at the hospital today from noon until 7pm. I am worn out. Tomorrow we both have to be there by 9am for three hours of "family training." LOVELY! 

I think these therapists see my dad in short bursts. So to them he may seem higher functioning than he really is. They truly do not have the same insights as I do, since I am the one doing all the work. 

Since my dad has been at the hospital (on Thursday will be two weeks), they have only bathed him ONCE. I bathe my dad everyday. Not to mention feed, toilet, do all his exercises and the list goes on. In comparison to their one hour sessions, my day looks MUCH different than theirs. As I read some of their reports from today through the portal, they view him as meeting goals. He maybe meeting some physical goals, but unfortunately without a lot of cuing and constant reminding, he absorbs and attains nothing. I view this as a problem, they just accept it. They are lucky to have the ability to accept things as they are, because as of Thursday my dad will be discharged, they will forget about him and move on to the next patient. Whereas I will be back to managing him 24/7. 

The real kicker today was my dad had a nursing assistant who told me I should be bringing in fleece blankets for my dad. That they are cozier and less heavy than hospital blankets. HONESTLY really? She is lucky I did not throttle her. I am balancing all of his needs in the hospital, saving her TIME! I get him plenty of hospital blankets and therefore he isn't cold. Instead, I think she could save me the guilt trip and focus on her own job. 

Sunday, March 13, 2022

Sunday, March 13, 2022

Tonight's picture was taken in March of 2006. Mattie was about four years old and this was a VERY unusual sight in our home.... Mattie napping! Even as a baby Mattie did not like napping. Which was why whenever I saw this happening, I knew Mattie was running a fever and was ill. In fact Mattie napping was so rare that I clearly decided to photograph it that day. 

Quote of the day: I can be changed by what happens to me. But I refuse to be reduced by it. ~ Maya Angelou

Before leaving for the hospital around 11:30am, I made a big pot of homemade chicken soup. It turns out to be a wonderful thing to have on hand especially after a long day at the hospital, when I come home and don't feel like cooking. The soup has all the important food groups in it and plenty of vegetables. 

When we got to the hospital today, I found my dad in his wheelchair, with the tray table in front of him. He had NO idea whether he ate breakfast or whether he received lunch. Basically on the fact that the tray wasn't in the room, I deduced lunch hadn't come yet. In rehab, meals are scheduled for 7am, noon, and 5pm. Since we moved the clocks forward an hour today, I think the hospital's kitchen missed the memo and lunch was served at 1pm. In any case, since my dad was so confused, I went to track down his nurse. 

I asked her whether he received breakfast and she rattled off what he ate! All the things I pre-ordered for him, so I knew indeed he did eat and that lunch hadn't arrived yet. But it is a sad commentary, that my dad can eat a meal one minute and then literally 5 minutes later has NO RECALL at all that he ate, much less can he tell you what he just ate. 

While in the hospital, we are also keeping a calendar and daily log for my dad. The idea is, like at home, he can refer to them to jog his memory! Of course he needs a lot of prompting and cueing to remind him that the logs/calendars even exist. In any case on the calendar we outlined his admission into the hospital on March 3 and then highlighted each day that he has been in the hospital. So that he knows for example that on March 3 he was admitted through the ER, on March 4 he had a pacemaker placement and then recovered on the sixth floor of the hospital until March 9, when he was admitted onto the second floor of acute rehab. 

For 45 minutes today my dad asked me about March 3 and to recount that day for him. Then he was confused about how March 3 led to his need to go to acute rehab. I have a lot of patience but after 45 minutes of this, I was besides myself. So again I pulled out the calendar, had him hold it and to recall what happened based on what was written in the calendar. All I can say is it takes an inordinate amount of patience. 

Being that it was Sunday, my dad had NO therapy today! Honestly I feel for all the patients on a Sunday because they are isolated in their rooms. Unless family comes to visit, it feels like lock down. My mom and I stayed with my dad from noon until 6:00pm. By 6 my dad was exhausted. However I never leave unless he has his pajamas on and is tucked into bed. Though there was no therapy today, I kept my dad busy with brains games such as Numbrix, word finds, and other puzzles. Not to mention thinking about his last ten days!

My mom wanted to go out to dinner tonight, to give me a break from my usual cooking and cleaning routine. At first I did not want to go, but when I was there, I was glad I broke my usual task and work cycle. We ate at Mattie's favorite restaurant and many of the people at the restaurant know us. When my mom and I walked in they wanted to know where my dad was, so we told them that he was in the hospital. They wanted to know more and wished him well. One of the hosts then told us that her husband died from diabetes and her mom recently had a stroke. She is young, therefore, you wouldn't expect her to be dealing with such losses! I listened and admired her upbeat personality, her positive attitude, and her commitment to help and love others around her. I would like to be more like that, but frankly that ship has sailed long ago.