Saturday, June 20, 2020

Saturday, June 20, 2020

Tonight's picture was taken in August of 2007. It as our yearly adventure to San Diego with my parents. That day, we went out to eat right by the water. I snapped this photo, but directly behind me was San Diego harbor. It was very beautiful and I can see why people move to San Diego. It is a city, but it isn't too big, and has the most delightful weather and access to the water. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people who were diagnosed with the virus: 2,254,662
• number of people who died from the virus: 119,719

At 12:30pm today we picked my dad up at the hospital. We brought him home to change and rest a bit. Then we took him to have lunch on a restaurant's patio. My dad ate up a storm. Like a lunch for three people. It makes sense since he was only on a fluid diet at the hospital since Tuesday. 

After lunch, we stopped by the house they are moving to next week. We had my dad sit in the backyard for a bit. What you can't see is in front of us is a golf course. There is built in entertainment in their backyard. Also beautifully green and peaceful. 

It is amazing that Peter and I look this well put together, given the schedule we have been keeping. Peter has been getting up at 5:30am every day and is working around the clock. It is taking every ounce of energy we have to balance my parents needs and packing and unpacking them into a new house. Next week is the last big push to move them into their new location. 

Friday, June 19, 2020

Friday, June 19, 2020

Tonight's picture was taken in August of 2007. Mattie was five years old and visiting my parents in Los Angeles. That day we took Mattie to the Los Angeles Zoo. It was an extremely hot day. So much so that we bought Mattie this spray bottle, that had a fan attached! That bottle and fan came on many adventures with us and to this day, I still have this bottle in my closet. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people diagnosed with the virus: 2,221,079
• number of people who died from the virus: 119,112

My dad was scheduled to have an endoscopy and colonoscopy today at 10:20am. We were told that the process would take over an hour and we expected to hear something by noon. Anyone who has ever had a colonoscopy knows that it can be a debilitating prep! You have to fast and also consume noxious fluid that is like an intense laxative! Making you have successive bowel movements. My dad was asked to take these tests because in a short period of time he lost over 30 pounds. He has been experiencing nausea and lack of appetite too. Then this week he came to the hospital with an impacted colon. So his GI doctor felt he needed to explore possibilities for these symptoms.

At noon, I called the hospital only to find out that my dad's nurse was on a lunch break. What I did find out was my dad's testing was postponed! I lost it! As he was unable to eat food from the night before. I wanted answers as to when his test was scheduled for, and I wasn't waiting for his nurse to get back from lunch. So I called to speak to the charge nurse. Who was attitudinal! She told me she was managing 32 patients and couldn't possibly know everything about them! I basically told her that wasn't my problem, as I have only one patient I am concerned about and as the charge nurse it is her job to know what is going on with patients under her charge. She aggravated me and I returned the favor, and then also called the gastroenterology practice to find out what the hold up was!

Needless to say my dad's nurse returned my call within minutes and told me my dad's testing was scheduled for 4pm! Then around 4pm, to my surprise I received a phone call from my dad's internist's office. They wanted to discuss the results with me! Which means that my screaming got things moving! My dad got the testing at 2pm, and not 4pm! Thankfully testing shows no grows or tumors of any kind. There is NO known physical explanation for my dad's weight loss, nausea, and loss of appetite! There may not be a physical explanation but I stand my ground.... there is a psychological one. Being quarantined for three months during the coronavirus, was VERY BAD psychologically and socially for my dad. It was a major set back for him and it started a negative spiral! We are all thrilled my dad doesn't have cancer and we are also noticing with IV hydration, his disorientation and confusion have significantly lessened. My goal is to get my dad on a walking routine and consuming fluid daily! He doesn't like to drink fluid, but it is necessary as dehydration exacerbates dementia. My dad returns home tomorrow and I know he is looking forward to leaving the hospital and seeing us. 

Meanwhile, I worked on a letter for my dad's hospital, which details the MANY issues that arose during our ER visit on Tuesday. I am glad the letter below was sent to the quality control department! I feel my letter merits a response.................................

Thank you for returning my phone calls and for providing me with your e-mail address. As I feel my observations and experiences within your ER this Tuesday are noteworthy and of great concern. I live in Washington, DC and have extensive experience working with hospital systems. I am in town now to help care for my dad, who was admitted to your hospital at the end of May and again this week. 

 

On Tuesday, while home with my dad, I realized he had an impacted colon and needed immediate attention. So my husband and I drove him to your ER. My dad was in terrible pain and every minute sitting in a wheelchair was unbearable for him. When I arrived inside the hospital, we were greeted by a nurse who took our information and walked us through the process of registering. At that time I was told I couldn't stay with my dad. However, I explained that my father has dementia and needed a family member with him throughout the process. The greeting nurse understood and allowed me in. 

 

We proceeded to the check in window and again that went smoothly. We were told to sit in the waiting area and that a triage nurse would call us. This is where it went down hill. We waited for 2.5 hours and throughout that time no one kept patients informed about the wait time or where any of us were in the cue. My father was bent over in pain and it was clear he was not a priority. It was only because I started complaining at 2.5 hours that we were finally called back to see the triage nurse. I want to mention that I wasn't the only person who had issues with the long wait. Other patients were very frustrated and visibly agreed with me as I was complaining. I was told the wait was so long because other critical patients were coming in by ambulance and being addressed. Though I understand and realize patients must get triaged based on critical needs, it is very clear that Providence St. Joe's is under staffed and can't effectively manage the needs of patients who walk through your doors. This is of great concern to me since this is my parent's local hospital. Given what I experienced on Tuesday, I have no confidence that your facility can handle critical cases in an emergency. Much less handle patients who have dementia. 

 

I am troubled by the lack of regard for vulnerable patients. Patients who have dementia and other cognitive or mental health concerns need a family advocate present in a hospital system. I understand the issues surrounding COVID-19, but these vulnerable patients can't possibly receive effective treatment and care if your medical team doesn't have the full picture of the problem. This is where the family advocate is vital, as we are a crucial part of the treatment team, and my dad is lucky that I am assertive and understand how to negotiate my way through a hospital system, because if I wasn't with him, I know his visit would have been a disaster.

 

Case in point, after the triage nurse talked with us, she then said I wasn't allowed back into the ER. I told her, NO WAY, that I had to come. She told me she would talk to the manager. I was asked to go back to the waiting room, and she proceeded to take my dad into the ER. By the time she came back to get me (because I was given permission to come back into the ER by the manager), I found my dad in the ER hallway, alone, and holding a urine specimen container. He had NO IDEA where he was, or what he was doing. He also had NO IDEA why he was holding a container. It was a disheartening scene, one which I photographed and happy to share it with you. If your hospital expects family members to leave you with their vulnerable family members, then you need a system in place to help shepherd these patients, so the process does not add to their disorientation, confusion, and fear. 

 

As promised, here is a list of the concerns as we experienced them:

1. A 2.5 hour wait time, with no updates or interfacing with staff during that time.
2. No system in place to help patients with dementia process through the ER.
3. It is very clear the ER is under staffed and the staff who are there are over worked. This directly affects the quality of care provided to patients. 
4. In the ten hours I was in the ER with my dad, we NEVER saw a medical doctor. Only a nurse and physician's assistant. Both were competent and lovely, but patients expect to see a physician when in an ER. 
5. Throughout my time in the ER, many patients around my dad's bed (#12) were calling out for help and a nurse. Of course NO ONE was around! Nurses are managing too many patients and unfortunately are assigned patients in multiple areas within the ER. So one's assigned nurse isn't even physically stationed within the area of the patient to seek help or ask questions. In fact, I would say that several hours went by between nursing visits. Which was disorienting to my dad, as he needed a lot of explanations and reassurances about what was happening to him and why he was in the hospital. How would these concerns and fears be managed if I wasn't there? I know the answer.... they wouldn't be!
6. My dad was in the ER for ten hours. At 10pm, I complained again and spoke with Sabrina, the night charge nurse. I demanded that my dad get an IV for fluids and some food. Why wasn't an IV inserted during these ten hours? Given that it was clear my dad was dehydrated (drawing his blood was next to impossible, as his blood was flowing like molasses), and dehydration exacerbates dementia, it leaves me wondering why he fell through the cracks.   

 

I am happy to discuss these concerns further, and it is my hope that this email will get passed along to your upper management. I am saddened to see how Providence St. Joe's is now managed. I remember volunteering at St. Joe's when I was a teenager, and it is very clear this is NOT the fine institution it once was. I look forward to hearing from you, as I feel my email merits a response. Much thanks for your time.

 

Thursday, June 18, 2020

Thursday, June 18, 2020

Tonight's picture was taken in August of 2006. My mom took this photo of Mattie and I on the USS Midway. The air craft carrier is a museum now in the San Diego harbor. The ship does a great job at orienting visitors. As we were given a map, an audio guide, and the freedom to explore all the levels. Mattie found this visit a true adventure, and I left in awe of how anyone could live on such a ship. As everything below deck, from my opinion, was tight and confined. 

Quote of the day: Today's coronavirus update from Johns Hopkins.

• number of people diagnosed with the virus: 2,189,056
• number of people who died from the virus: 118,421

Another day when I woke up at 8am. It felt good! After I got showered and dressed, I went downstairs to find my mom (who was already up) sitting in a dark family room. Shivering. I think she was too exhausted to get up and get a blanket. So I covered her and put a heating pad on her. Also started her on Tylenol and made breakfast. We determined she needed to slow down and take a good portion of the day to rest. 

Later on in the afternoon, we drove to the home my parents are moving to and we did some chores as well as met two women who we interviewed. These ladies will be helping my parents keep their home clean and do household chores. They are related to each other and were recommended to my mom by their local church. Turns out one of these ladies had a son who died in January, so she and I related to each other immediately. The ladies were lovely and I found out that in addition to house cleaning they are also professional caregivers. 

The update on my dad is that he is holding his own. He started colonoscopy prep today and tomorrow he is scheduled for both a colonoscopy and endoscopy. My greatest hope is the tests find nothing, or only something that is easily correctable. The longer my dad is in the hospital the more likely he will lose ground physically and mentally. As hospital life is disorienting and they are keeping him confined to bed. So all the progress he made walking at home and climbing steps, will shortly be gone! 

When I moved my parents back in 2018, it was hard, but nothing like now. Now, I am spread too thin and unable to focus on the move. I can only do packing and unpacking for very short snippets of time during the day. Which is why I am grateful Peter is with me. Peter is doing the yeoman's share of the job here and thankfully he has many skills from managing logistics, household budgets, trouble shooting, tech support and the list goes on!

Wednesday, June 17, 2020

Wednesday, June 17, 2020

Tonight's picture was taken in August of 2006. This was the view from our hotel room in San Diego. Mattie loved visiting San Diego, mainly because of all the activities and fun he would have there. Mattie loved Sea World, Legoland, touring the USS Midway, walking around outside, and seeing the ships go by in the harbor. Mattie was not a couch potato and did not need any down time. Therefore, it was important to keep his body moving and his mind stimulated by day. San Diego enabled us to achieve this and it brought all of us happiness to see Mattie taking in the world around him.

Quote of the day: Today's coronavirus update from Johns Hopkins.

• number of people diagnosed with the virus: 2,163,290
• number of people who died from the virus: 117,717

I went to bed close to 2am last night. I woke up at 8am this morning, and it felt great. I honestly don't know how I wrote last night's blog. As I was exhausted and was having trouble staying awake to string words together. Yesterday was such a horrific day, and even today I am still ranting about the poor ER experience we had. I have called the manager of the ER twice, and she has yet to return my calls. Totally unprofessional in my perspective. 

Given the coronavirus, we are unable to visit my dad. In fact, they told my dad that he wasn't allowed any visitors.... which was a message directed to me. I understand the importance and safety precautions now because of COVID-19, but there have to be some exceptions to this rule, as there are patients who need extra support and are vulnerable. Without an advocate they won't get the appropriate care and medical treatment necessary. 

Either case, we spoke to my dad, his nurse, and his doctors today. We got the full update. Thankfully the second enema kicked in after I left last night, and my dad continued to have bowel movements all day today. My dad fought me last night. He did not want to be admitted to the hospital. I can't blame him! No one likes being in the hospital, but I rationalized with him and explained that it is important to know that he passes this large solid poop ball, because if he doesn't we would have to come back to the ER and begin the whole hateful process all over again. Neither one of us wanted this!

Needless to say, my dad is spending another night in the hospital. His GI doctor wants him to get a colonoscopy to rule out any tumors or blockages. Since my dad is still experiencing pain, we feel it is important for him to comply with the test. In fact, my dad's nurse called me because my dad refused the test and that was reflected in his medical chart. After we got off the phone with her, we called my dad and discussed why it was important for him to take the test and why he should do it while inpatient. 

I am waiting for 9pm, as I need to call my dad's nurse to talk with her about how we are all in agreement for him to take a colonoscopy tomorrow. So the process continues and until we get answers, we all feel uncertain about what is going on! Meanwhile, in addition to staying close to the phone, we also went over to the house my parents are moving into on Monday. We worked hard at setting up closets, cleaning bathrooms, and Peter was assembling cabinets and doing other logistical chores. At some point, Peter and I took a break and sat in the backyard. The backyard faces a local golf course. Literally while sitting for a short time, a golfer saw us and shouted at us...... "this is the life!" I understood his point, but if he only knew the true story we are facing, I have a feeling, he would have a shouted out a different tune. 

Tuesday, June 16, 2020

Tuesday, June 16, 2020 -- Mattie died 559 weeks ago today.

Tonight's picture was taken in August of 2006. We took Mattie to Balboa Park in San Diego! As you can see the park was a beautiful space. Filled with museums, greenery, ponds, and a lot of things to keep kids and adults engaged. In typical Mattie fashion, he brought a toy train along for the adventure. Mattie usually did not travel empty handed, and this photo reminds me of this. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people diagnosed with the virus: 2,137,731
• number of people who died from the virus: 116,963

Today was an incredibly difficult day! If you would have told me yesterday that I'd be spending ten hours in an ER today, I wouldn't believe it. My dad started to complain of constipation last night. Issues with his bowels are nothing new for us, as he has struggled with irritable bowel syndrome for as far back as I can remember. By this morning, he was doubled over in pain and moaning! In fact, I heard him moan most of the day, that the sound is ingrained in my head. Hearing someone in constant pain, makes you want to jump out of your skin. 

I had Peter go to the pharmacy to pick up laxative suppositories. I used them with Mattie often when he was ill, and therefore knew how to administer them. I also know they are usually effective. However, I had no luck getting the suppositories to stay within his body. He literally pushed a suppository out four times. So I knew we had a problem. 

Peter and I took my dad to the ER. I arrived inside with my dad at 1:30pm. They told me I wasn't allowed inside, but that did not stop me. My dad needed the support and I wasn't going to let him navigate a hospital system while in pain. Thank goodness I am assertive because otherwise he would have fallen through the cracks.

I took on everyone today..... the ER manager (who runs a poor operation), two charge nurses, and the list goes on! I know the hospital we took my dad to, because when I was a teen, I did hundreds of volunteer hours there, and back then it was a very nurturing and patient focused facility. Now its all about the bottom line and professionals are not appreciated and forget about patient centered care. I noticed quickly that there was a lot of professional turnover and the nurses are expected to perform double the work. In fact, having the time to interact with a nurse in the ER was difficult, but believe it or not, we never saw a doctor during our entire 10 hour visit.It took us 2.5 hours to process through the ER. It was unacceptable!

This is my dad sitting in the hallway of the ER. At first they wouldn't let me back with him, but I made such a fuss, I was able to stay and escort him throughout the entire day. But when I reconnected with him, I found him holding a urine specimen cup and was parked in the hallway..... NOT KNOWING WHY! 

Peter remained in the parking lot for ten hours, while I was in the hospital with my dad. Peter said he wasn't leaving his "wingman" behind! I was honored. 

My dad endured a blood test, xrays, a ct scan, and two enemas! Not easy for him, but I have to imagine my presence helped. As my dad gets confused and disoriented easily and I wanted to make sure he was getting the best possible care!

The second enema was called soap suds. A soap suds enema is one way to treat constipation. While there are many types of enemas, a soap suds enema remains one of the most common types, especially for constipation. It’s a combination of distilled water and a small amount of soap. The soap mildly irritates your bowels, which helps to stimulate a bowel movement.

Can you see the small bucket in the background? All the fluid was infused with the hopes that is would break down this large massive poop ball that formed in his colon! 

Fortunately the testing revealed no cancer, no stones, and no bowel blockage. I am headed to bed because I am not thinking clearly and I am falling asleep while typing. As of tonight, my dad was admitted to the hospital, but like I told his doctor, I don't trust this hospital system one bit and I was concerned to leave my dad because no one was paying attention to him. 

Monday, June 15, 2020

Monday, June 15, 2020

Tonight's picture was taken in August of 2006. That weekend we took Mattie to San Diego. Mattie loved this part of California, as there was just so much to do outside. Mattie thrived on being in the outdoors, and did not enjoy being cooped up inside. That day we took him to Balboa Park. Balboa Park is a lot like Griffith Park in Los Angeles. In the sense that it is filled with all sorts of activities and even a zoo. Mattie loved the model railroad museum at Balboa Park, the San Diego Zoo, and the carousel. It is such a beautifully planned park that all of us enjoyed visiting it!

Quote of the day: Today's coronavirus update from Johns Hopkins.

• number of people diagnosed with the virus: 2,111,622
• number of people who died from the virus: 116,114

It was another busy day. I woke up at 6:30am. Got myself ready, and then helped my dad shower and change into clean clothes. He has a very bad pressure sore on his spine, that we are monitoring and making sure it remains closed. With the hopes that it will heal. 

Though my dad has a few physical limitations, on the whole he is strong and is capable. The main issues are cognition and chronic exhaustion. After the shower, my dad had to lie down and rest. He ate breakfast in his recliner, as he did not have the energy to sit at the breakfast table with us. After eating, he slept until Jon, the physical therapist, arrived. Jon is downright lovely! He made my dad work for about 60 minutes today. What Jon's exercises prove to me is that my dad can physically walk and exercise. But when Jon is not around, my dad chooses not to do his exercises. 

It is hard to fight stubborn, hard headed, and his aggressiveness at times. 

I call this the ballet plie! 

Jon gave my dad a new exercise today, which illustrated to me his upper body strength. 

I would say that Jon was the highlight of the day, as everything else went downhill from there. Peter called my parent's movers. Though the company acknowledges that my parent's made an inquiry, my parents never booked moving dates. So though Peter and I were prepared for a Thursday and Friday move, the movers weren't! Peter explained the situation, and the company is trying to arrange for movers on June 22. Needless to say, Peter decided to stay in LA with me another week, rather than return to DC. As it really takes both of us to manage care and the move! Things now are not stable, and I am under no delusion that things will return to normal. 

Which is why I have been working with a caregiving agency to work on respite details, so that my mom gets daily/weekly breaks. Fortunately caregiving is not new to me, but I have to admit, caring for a loved one with dementia has a different set of challenges from a stroke and cancer. Things I am more familiar with! 

I would have to say that today was not a good eating day! My dad ate very little, and though we try to explain the importance of nutrition and drinking fluids, we aren't getting very far. For me, I am very sensitive to the stresses of those around me, so I am not sleeping or digesting food very well. 

Sunday, June 14, 2020

Sunday, June 14, 2020

Tonight's picture was taken in August of 2006. That day, my parents and I took Mattie to the USS Midway. Which is a World War II air craft carrier, that was turned into a museum in the San Diego harbor. Mattie LOVED all sorts of locomotion, and we figured he would love exploring the carrier. Everyone working on the carrier was professional and friendly and Mattie got a full tour of the ship, from top to bottom. In this photo, we were standing on deck, where thousands of air craft, over the course of history, took off and landed. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people diagnosed with the virus: 2,094,058
• number of people who died from the virus: 115,732

We get up early each day, Peter before 6am, and me by 6:30am. This timing is important, in order to get as much done during the day as possible. This morning when I awoke, I found my dad up and in the bathroom. My mom and I asked him if he wanted to go back to sleep or wanted to take a shower. That question set him off and he started yelling. He did not want to take a shower and proceeded to tell us that he never took a shower 7 days a week at any point in his lifetime. We tried to explain to him that this wasn't true and reminded him how fastidious he has always been about himself and what he wore. Naturally from a mental health standpoint, I know arguing with someone who isn't cognitively intact serves no purpose, but it much harder to be this impersonal when it is a loved one. 

Any case, my dad went back to bed and at 8am, we woke him up and tried to find out what he wanted to do. He did take a shower today and I have to say this one was easier than yesterday's. The first is always the hardest, because you just don't know exactly what you need to do. 

Saturday and Sunday, no therapists come, so we have more flexibility in how our day will go. We did a lot of packing today and by the end of today, we have moved all my parents clothes to the new house. Peter and I spent three hours moving things to the new home, and I unpacked the entire kitchen and set it up. Peter was working on cleaning floors and it is my hope to get to cleaning bathrooms tomorrow. It is non-stop work and I know that if I do not manage the details, which includes packing, unpacking, and setting up every room of the home, it will be impossible for my mom to do alone. 

Meanwhile, I snapped this photo of the Famous Bob Big Boy mascot in front of the restaurant. A restaurant which has been at this location since 1936 and was declared a historical landmark by the state of California in 1993. I couldn't get over it, even Bob had on a mask! 

At the end of the day, this is the amount of trash we brought back to my parents home. What is it? Packing boxes (that were unpacked) and paper used to protect breakables. 

We now have a garage filled with donated items and garbage! I am thrilled both are getting picked up tomorrow. As this will be one less thing to worry about. 

Saturday, June 13, 2020

Saturday, June 13, 2020

Tonight's picture was taken in August of 2006. Every August, I took Mattie out to Los Angeles to visit my parents. Mattie was beginning to get comfortable in the water and was learning how to swim. Which we tried to encourage. Ironically though Mattie liked adventure, he approached new activities cautiously. Which actually made parenting him much easier, as he wasn't the kind of kid to jump in a pool, touch a stove, and get into trouble. 

Quote of the day: Today's coronavirus update from Johns Hopkins.

• number of people who were diagnosed with the virus: 2,074,526
• number of people who died from the virus: 115,436

My morning started at 6am. Not on purpose! My mom was knocking on my bedroom door to get up! Why? Because my dad was up and he wanted to take a shower. My dad came home from the hospital on June 3. For two weeks, he has been unable to take a shower. When I arrived in LA, we requested a shower nurse to come over to help my dad. Given that I was unsure how best to safely bathe him, it made sense to wait for the nurse. However, when I spoke to the nurse about a day ago, I am finding that we can't find a time and day that works for both of us. She is available after 3pm, and that won't work for my dad, as his level of exhaustion heightens by that time. 

So whether I was ready or not, at 6am, I had to figure out how to bathe my dad. Part of his cognitive decline is that when he wants something, he wants it done immediately. I literally jumped out of bed and was jolted awake to figure out a safe shower solution. But we got it done! The first time is always harder!

After we got him showered, he was exhausted. So he rested while we took a shower and got dressed. Then I made breakfast and began packing up part of the house. Peter has been going back and forth from one house to the other and thankfully he rented a minivan, as we fill it three or more times a day to transfer items. I could never manage all of this without Peter. We are both working very hard. 

This evening, I started cleaning bathrooms at the house my parents will be moving into next week. Needless to say we are on overload, with caregiving, cleaning, and moving. I wish I could be creative in my writing, and perhaps I will once I can get this move behind us. But for now we take it one day at a time.