Two. Months.
August 16th - September 16th
I start this with August 16th when my dad was actually admitted to the hospital on August 13th. I flew in from my home in Colorado, leaving Shawn and Jarvis to hold down the proverbial fort. From the 13th through the 19th, my dad was on a medical floor. That's were he was being treated for all the things jacked up by his liver. Then, the 19th through the 28th he moved to a skilled nursing floor (SNF) for inpatient physical and occupational therapies. On the 27th he went to ICU in a desperate attempt to get him to the Main Campus of the Cleveland Clinic where they had a unit that would focus on his liver which wasn't available at the Euclid Hospital satellite branch of the Cleveland Clinic. That attempt didn't work, so he was transferred back to the medical floor. Then, on the 31st, he made his way to Main Campus. His time at Main was August 31st through September 5th. And, finally, back to Euclid's SNF and lots of PT and OT from September 5th through September 16th. Then home.
So, month 1 was all about the hospital stays. He was having procedures. We were talking to doctors and NPs and nurses and aides and physical therapists and occupational therapist throughout all of that time. I was learning things I had known nothing about, such as, the body has ammonia in it. For real, ammonia. The liver is supposed to flush it out and when it doesn't it goes to the brain and turns you into a different person. My mom and I spent most of our time with him. We worked on crossword puzzles and watched TV as he dosed in and out. I would help him with his meals because opening his drinks and other sealed items took fine motor skills he didn't quite have. On SNF, he could wear regular clothes to go to therapy. In the evening, he would go back to his gown and, at times, I would help him change. One day, I noticed his legs were dripping fluid. That was something I could have done without seeing. Some days I had to brace myself for visitors who were not my cup of tea. That's a tough one. There was one afternoon when my mom and I had gone to get something to eat. My mom decided to call the priest from their parish to have him visit, maybe bring communion, too, I can't remember. She found out that he had just been up their. When we got back, my dad was in a terrible state, almost completely reclined. His respiratory therapist came in for his afternoon treatment and he shooed her away. He asked me to come over and I bent over to hear him. He whispered to me that he didn't think he was going to make, that he was going to die. Believe me, this is not anything you want to hear from anyone you love's mouth. We heard from others that sometimes, when a minister of some sort visits and bestows a blessing, the patient can take a turn because they see that experience as a sign of impending death. Thankfully, he perked up. He was quite an ornery patient and I often had to explain things to him. Sometimes, he would understand, and other times he would continue to be difficult.
September 16th came, and he was discharged.
September 16th - October 16th
This begins my last month. This period of time may have been worse. There was no aide to ring for to go to the bathroom. No nurses to be the bad guys dispensing his meds, especially his lactulose. It was the medication to help his ammonia levels lower. It's a disgusting, orange, syrup about which he would grumble when having to take it. My mom was trying to come up with meals that would meet up to the special dietary restrictions he needed to maintain outside of the hospital. I was working on a family calendar for people to help my mom with getting my dad to appointments. I was also sending emails to my siblings to summarize the hospital discharge notes and any other information from other appointments. One thing I never saw myself as having to do is empty out a portable urinal, but there I was. Some days were shitty, literally and figuratively. Lying in my parents' regular bed was not working out well, so he would sleep in his recliner. It was the kind that can lift you into standing and can put you horizontal. Some nights, I'd hear him in the middle of the night. There were different things he was moaning about. One night, he needed more water. Another time, it was to tell me the newspapers on the floor next to him were ready to be recycled. He was having some hip pain and pain from a sore one night. He couldn't really roll to his side. So, I got some pillows to prop him onto his side. I had to push him and hold him on his side while trying to position the pillows. Thankfully, it helped. There was also a time where he was afraid he missed his friend's birthday. I looked through the pile of items to be mailed and told him there wasn't a card so it must have been mailed already. He then cried because it was also his favorite aunt's birthday. He went back to being upset about his friend. He talked about his friend not knowing about all that had been going on. He mentioned that he always calls his friend. So, I told him he could call his friend the next day. I wrote a note, "Call Joel for his birthday" with his phone number in large digits. I put it on the table next to the chair. Then, I can't remember how, but I found out he that it was March. I told him he could still call Joel, but I just crossed off the birthday part of the note. It was weird how the lucid moments would happen, often when visitors were around. My mom and I bore the brunt of his personality switch. We did have some good moments watching the Democratic candidates' town halls and debates.
October 16th, the day I was leaving, it was like my dad had rebuilt all his strength and channeled it into the grip he had on my arm as I was heading out the door.
Two. Weeks.
October 16th - October 29th (technically 13 days, but still)
I got back to Denver and was so lucky to be greeted by Shawn almost as enthusiastically as by Jarvis (😉) It was nice to get a message of appreciation for all that I had done over my 2 month stay. I wish I had more of that. That probably sounds selfish and needy, but so much happened in the time in Cleveland and I was exhausted. I have felt underappreciated. I don't know what to do with myself now that I'm back. My days were filled with so much and here I am doing next to nothing. I didn't capture all of the things from Cleveland in this post. The toll some people and some things took on me is significant and probably best unsaid. My mental health has taken a hit. In the end, I did my best and now that I'm back home I'll have to figure out the rest.
Tuesday, October 29, 2019
Thursday, October 10, 2019
Oh, what a mental health day....life
It's World Mental Health Day and I feel a sense of obligation to write today. I'm just not sure what to say.
Over the last two months, I feel like my mental health has been challenged, but I haven't necessarily been up for the fight. I've been tired, not just sleepy, but tired in my bones, my muscles, and my ability to handle my stress and emotions. My level of frustration and guilt has lead me to extra Ativan in the hopes of easing my anxiety and the extreme nausea it brings. I feel overwhelmed about leaving next week. I desperately want to see Shawn and, of course, Jarvis. The hope I have is that they will bring me relief and calm, they will distract me from my sense of worry.
On the topic of mental health, but not really like what I've written above, my mom and I had an interesting conversation. We both suffer from mental health issues. Her meds seem to work pretty well, so perhaps I'm the one suffering. Anyway, the other day we had a conversation which is probably not a typical one for mothers and daughters. We talked about suicide. We talked about our thoughts, our ideations. One of hers was terribly violent, if you ask me. She was young, still living at home, dealing with depression in an era in which you didn't, and saw a letter opener...to shove...in her neck. It made my car crash, overdosing, car running in the garage thoughts seem really calm. For both of us, they were suicidal ideations, they weren't actual plans. We're both still here. For me, I can't exactly say why, but I am.
In the general sense of life, I am here. I am here and I am with Shawn.
Over the last two months, I feel like my mental health has been challenged, but I haven't necessarily been up for the fight. I've been tired, not just sleepy, but tired in my bones, my muscles, and my ability to handle my stress and emotions. My level of frustration and guilt has lead me to extra Ativan in the hopes of easing my anxiety and the extreme nausea it brings. I feel overwhelmed about leaving next week. I desperately want to see Shawn and, of course, Jarvis. The hope I have is that they will bring me relief and calm, they will distract me from my sense of worry.
On the topic of mental health, but not really like what I've written above, my mom and I had an interesting conversation. We both suffer from mental health issues. Her meds seem to work pretty well, so perhaps I'm the one suffering. Anyway, the other day we had a conversation which is probably not a typical one for mothers and daughters. We talked about suicide. We talked about our thoughts, our ideations. One of hers was terribly violent, if you ask me. She was young, still living at home, dealing with depression in an era in which you didn't, and saw a letter opener...to shove...in her neck. It made my car crash, overdosing, car running in the garage thoughts seem really calm. For both of us, they were suicidal ideations, they weren't actual plans. We're both still here. For me, I can't exactly say why, but I am.
In the general sense of life, I am here. I am here and I am with Shawn.
Thursday, October 3, 2019
It's a Dark Knight
Shawn: Come on, Buddy, it's dark out.
Jarvis: All the more reason to be vigilant. I may not be the hero {insert city} deserves, but I'm the hero it needs right now.
Wednesday, October 2, 2019
Two weeks left of the most difficult two months
For some reason, I thought I would be blogging more while being out here helping with my dad. Maybe it has to do with being tired and busy, I don't know. I have two weeks left and I'm ready. That probably sounds shitty, well, I've felt shitty.
I know Eleanor Roosevelt said, "No one can make you feel inferior without your consent." God, I wish I had her steadfastness. I'm still here feeling terrible because of the words and actions of another at a time when I really am trying to muster all the strength I have. I've been dealing with what might be considered Imposter Syndrome. I feel like I've done nothing near to what some think. I've not earned the kind words of others. Shawn says I have, so I should try harder to believe him.
I know Eleanor Roosevelt said, "No one can make you feel inferior without your consent." God, I wish I had her steadfastness. I'm still here feeling terrible because of the words and actions of another at a time when I really am trying to muster all the strength I have. I've been dealing with what might be considered Imposter Syndrome. I feel like I've done nothing near to what some think. I've not earned the kind words of others. Shawn says I have, so I should try harder to believe him.
But, what this entry is really about is hepatic encephalopathy again.
While talking with Shawn during one of our nightly phone calls, I told him one of the things I have come to realize. When all is said and done, whether I stay here longer than 2 months or stick to the plan, my last memories of my father will not be the way I would choose. The hepatic encephalopthy distances me from the Dad I have always known. It has changed him in ways I do not like to see. Many visitors get to see him when he is rather lucid and don't really experience what my mom and I do in what I refer to as the witching hour. No matter how much I try to remind myself that he is not himself, the "this is the disease talking" mantra works very little. I lose my patience, there is no reason to lie about that. This mean, crabby, demanding, and angry man is not my dad; it is high ammonia levels and end stage liver failure. I need to try to recognize that.
Saturday, September 21, 2019
Hepatic Encephalopathy - the biggest struggle of my life
My dad was admitted to the hospital on August 13th and I came to town on August 16th with a plan of staying until October 16th...I'm struggling with it.
This is an email I sent my family. The only thing on the list that wasn't really a reason for the visit was his Diabetes.
"I'm sending some info about Dad's various health issues we are dealing with. I think it is important for everyone to be on top of things. Mom needs support and backup when possible.
Diabetes - From what I understand, Dad is a terrible diabetic. He has manipulated his insulin to eat things he shouldn't. I have heard about this from family and friends of his. His diet is regulated at the hospital. He should only be eating what is brought to him on his tray. What he ends up eating off the tray is logged. Right now, his blood sugar is getting closer to a healthier level, which, ideally is under 140. Food should not be brought to him. He, at this point, cannot make decisions about foods that impact his diabetes negatively. His intake of fruit or cake are both an issue. Anything ending in -ose is sugar.
Grade II esophageal varices - These are, essentially, varicose veins like people have in their legs. However, these are in the esophagus. The issue with these is the possibility of rupture and bleeding. Dad is a bleeding risk and his platelets tend to be low so if this were to rupture, it would be a very serious, if not fatal, situation. When he was at the Clinic, he had a procedure to have them banded. They only band up to 6 and that was what happened with that. In a couple weeks, he will go for his first follow-up check and will continue to have things checked. I don't remember how often.
Nonalcoholic steatohepatitis (NASH) - This is his cirrhosis. The liver hardens and then things go downhill. His liver does not function properly and will not ever again. The failure is what causes the big problems. It causes the fluid that builds in his abdomen and things like the high ammonia. It just can't filter out the toxins.
Hepatic Encephalopathy - This is liver related brain malfunction. Toxins, like ammonia, that are not being filtered correctly make their way to the brain. I'm pretty sure everyone has witnessed this in Dad. The ammonia levels are a big part, but other things that aren't flushing out through the liver can add to it. The treatment for the ammonia issue is a drug called lactulose. You have probably been in his room when he has taken it. It is a syrupy orange liquid that he turns his nose up at. Today he was increased from 4 to 5 times a day. You may notice him needing to use the commode more as his body adjusts. This might get a little better, but his confusion/agitation is pretty much his new normal.
Splenomegaly - This is an enlarged spleen and it is another effect of the liver disease.
Recurrent Ascites - This is the abdominal fluid that he has to have drained. His drainage has been a little over 5 liters, 5.5 liters, and 9.5 liters. You may have noticed his abdomen on the left side looking full again. There has not been talk of another tap yet. They are trying diuretics (meds that cause urination to flush the system), but it doesn't seem a likely solution. Continuing taps will most likely be the way things go from here on out.
Thrombocytopenia - This is low platelets. He should never be on a blood thinner because of this. The severity of the bruising he has on his arms are an example of his bleeding problem.
Now, for something on the upswing that needs to be encouraged. He has physical therapy twice a day and once a day he has occupational therapy. He has surpassed expectations at this point. It's great, but once he comes home, he needs to keep things up and not go back to the sedentary lifestyle he has been living. An example of something is not spending all his time in his chair and not using the lift function in place of using his own strength. He hasn't worked on steps yet, so not sure how that will go. If he could just manage the few steps to get in and out of houses, that would be better than nothing. Getting back to Church is something he has mentioned, but again, that is not something easy and he'll really need to work on that. I'm not sure how this will all play out, but right now, he's doing more than I ever expected.
Also, family is allowed to be with him in the therapy room. The times vary, so you'll have to check. It is on the 4th floor. This can be good for moral support and giving the therapists info. He really can go off on tangents and think he's answering questions when he really isn't.
There are more things I have done, seen, heard, and learned since I got here in mid-August than I ever expected for my life. If you have questions or anything, you can ask and I'll see if I know. Or, get in touch with Mom.
Thanks"
On September 16th he got discharged after bouncing around from hospital to hospital and back to the original hospital.
Of all the things on this list, Hepatic Encephalopathy is the worst to deal with as far as care giving. He is a completely different person. At times, my mom and I look at each other with a head shake. I've said it's like dealing with a toddler sometimes. I've heard him say things I've never heard from him. His abdominal fluid issue is relieved for a time when he has tapped. This doesn't work like that. The medication used for it is only really used to try to keep things somewhat under control. Honestly, I cannot picture what he would be like without the medication.
The is the most difficult time of my life and I had ECT and lost my memory of 2016.
This is an email I sent my family. The only thing on the list that wasn't really a reason for the visit was his Diabetes.
"I'm sending some info about Dad's various health issues we are dealing with. I think it is important for everyone to be on top of things. Mom needs support and backup when possible.
Diabetes - From what I understand, Dad is a terrible diabetic. He has manipulated his insulin to eat things he shouldn't. I have heard about this from family and friends of his. His diet is regulated at the hospital. He should only be eating what is brought to him on his tray. What he ends up eating off the tray is logged. Right now, his blood sugar is getting closer to a healthier level, which, ideally is under 140. Food should not be brought to him. He, at this point, cannot make decisions about foods that impact his diabetes negatively. His intake of fruit or cake are both an issue. Anything ending in -ose is sugar.
Grade II esophageal varices - These are, essentially, varicose veins like people have in their legs. However, these are in the esophagus. The issue with these is the possibility of rupture and bleeding. Dad is a bleeding risk and his platelets tend to be low so if this were to rupture, it would be a very serious, if not fatal, situation. When he was at the Clinic, he had a procedure to have them banded. They only band up to 6 and that was what happened with that. In a couple weeks, he will go for his first follow-up check and will continue to have things checked. I don't remember how often.
Nonalcoholic steatohepatitis (NASH) - This is his cirrhosis. The liver hardens and then things go downhill. His liver does not function properly and will not ever again. The failure is what causes the big problems. It causes the fluid that builds in his abdomen and things like the high ammonia. It just can't filter out the toxins.
Hepatic Encephalopathy - This is liver related brain malfunction. Toxins, like ammonia, that are not being filtered correctly make their way to the brain. I'm pretty sure everyone has witnessed this in Dad. The ammonia levels are a big part, but other things that aren't flushing out through the liver can add to it. The treatment for the ammonia issue is a drug called lactulose. You have probably been in his room when he has taken it. It is a syrupy orange liquid that he turns his nose up at. Today he was increased from 4 to 5 times a day. You may notice him needing to use the commode more as his body adjusts. This might get a little better, but his confusion/agitation is pretty much his new normal.
Splenomegaly - This is an enlarged spleen and it is another effect of the liver disease.
Recurrent Ascites - This is the abdominal fluid that he has to have drained. His drainage has been a little over 5 liters, 5.5 liters, and 9.5 liters. You may have noticed his abdomen on the left side looking full again. There has not been talk of another tap yet. They are trying diuretics (meds that cause urination to flush the system), but it doesn't seem a likely solution. Continuing taps will most likely be the way things go from here on out.
Thrombocytopenia - This is low platelets. He should never be on a blood thinner because of this. The severity of the bruising he has on his arms are an example of his bleeding problem.
Now, for something on the upswing that needs to be encouraged. He has physical therapy twice a day and once a day he has occupational therapy. He has surpassed expectations at this point. It's great, but once he comes home, he needs to keep things up and not go back to the sedentary lifestyle he has been living. An example of something is not spending all his time in his chair and not using the lift function in place of using his own strength. He hasn't worked on steps yet, so not sure how that will go. If he could just manage the few steps to get in and out of houses, that would be better than nothing. Getting back to Church is something he has mentioned, but again, that is not something easy and he'll really need to work on that. I'm not sure how this will all play out, but right now, he's doing more than I ever expected.
Also, family is allowed to be with him in the therapy room. The times vary, so you'll have to check. It is on the 4th floor. This can be good for moral support and giving the therapists info. He really can go off on tangents and think he's answering questions when he really isn't.
There are more things I have done, seen, heard, and learned since I got here in mid-August than I ever expected for my life. If you have questions or anything, you can ask and I'll see if I know. Or, get in touch with Mom.
Thanks"
On September 16th he got discharged after bouncing around from hospital to hospital and back to the original hospital.
Of all the things on this list, Hepatic Encephalopathy is the worst to deal with as far as care giving. He is a completely different person. At times, my mom and I look at each other with a head shake. I've said it's like dealing with a toddler sometimes. I've heard him say things I've never heard from him. His abdominal fluid issue is relieved for a time when he has tapped. This doesn't work like that. The medication used for it is only really used to try to keep things somewhat under control. Honestly, I cannot picture what he would be like without the medication.
The is the most difficult time of my life and I had ECT and lost my memory of 2016.
Tuesday, September 10, 2019
Dog walking: A guest post from Shawn
Jarvis and me on a walk...
Jarvis: Hang on, I'm going to poop.
Me: Okay.
Jarvis: Okay, this is a good spot. Let me just...
Me: Hang on, don't do it there. Come over here a ways.
Jarvis: Oh, I shouldn't poop?
Me: Yes, go ahead, I just didn't want you to do it over there, right next to those people's window. Just do it over here.
Jarvis: I see, no pooping then.
Me: What? No, you can poop, just not over there. Go ahead.
Jarvis: I understand. I won't poop then.
Me: Why are you being like this? I think you're being passive-aggressive.
Jarvis: I don't know what that is. It sounds like a human thing.
Me: Are you going to poop or what?
Jarvis: No need.
Me: -sigh- Fine.
Twenty minutes later, at home...
Jarvis: Take me out, I need to poop.
***
Another walk with Jarvis...
Jarvis: GRRRRR
Me: What's the matter?
Jarvis: I hate those guys so much!
Me: Who? You mean those two dogs, that are like a block away? The ones you've never actually interacted with? You hate them?
Jarvis: SO MUCH!
Me: Why? What did they--
Jarvis: HEY ASSHOLES! YEAH, YOU! I THOUGHT I TOLD YOU NEVER TO COME AROUND HERE!
Me: Jarvis, they live three doors down from us.
Jarvis: DON'T ACT LIKE YOU CAN'T HEAR ME! IF I GET A HOLD OF YOU, I'M GOING TO RIP OFF YOUR HEADS AND SHOVE THEM UP EACH OTHER'S BUTTS!
Me: They're both bigger than you; I'm pretty sure they'd beat the crap out of you!
Jarvis: DO YOU KNOW WHO I AM? DO YOU KNOW WHO THE FUCK I AM?!?!
Me: Jesus, Jarvis, chill out! Where did that come from? Look, they're gone now, you can relax.
Jarvis: ~whine~
Me: Now what's wrong?
Jarvis: I miss those guys...
Jarvis: Hang on, I'm going to poop.
Me: Okay.
Jarvis: Okay, this is a good spot. Let me just...
Me: Hang on, don't do it there. Come over here a ways.
Jarvis: Oh, I shouldn't poop?
Me: Yes, go ahead, I just didn't want you to do it over there, right next to those people's window. Just do it over here.
Jarvis: I see, no pooping then.
Me: What? No, you can poop, just not over there. Go ahead.
Jarvis: I understand. I won't poop then.
Me: Why are you being like this? I think you're being passive-aggressive.
Jarvis: I don't know what that is. It sounds like a human thing.
Me: Are you going to poop or what?
Jarvis: No need.
Me: -sigh- Fine.
Twenty minutes later, at home...
Jarvis: Take me out, I need to poop.
***
Another walk with Jarvis...
Jarvis: GRRRRR
Me: What's the matter?
Jarvis: I hate those guys so much!
Me: Who? You mean those two dogs, that are like a block away? The ones you've never actually interacted with? You hate them?
Jarvis: SO MUCH!
Me: Why? What did they--
Jarvis: HEY ASSHOLES! YEAH, YOU! I THOUGHT I TOLD YOU NEVER TO COME AROUND HERE!
Me: Jarvis, they live three doors down from us.
Jarvis: DON'T ACT LIKE YOU CAN'T HEAR ME! IF I GET A HOLD OF YOU, I'M GOING TO RIP OFF YOUR HEADS AND SHOVE THEM UP EACH OTHER'S BUTTS!
Me: They're both bigger than you; I'm pretty sure they'd beat the crap out of you!
Jarvis: DO YOU KNOW WHO I AM? DO YOU KNOW WHO THE FUCK I AM?!?!
Me: Jesus, Jarvis, chill out! Where did that come from? Look, they're gone now, you can relax.
Jarvis: ~whine~
Me: Now what's wrong?
Jarvis: I miss those guys...
Wednesday, August 7, 2019
What's in a name?
I found out today that a man who was a big part of my childhood died. He and his wife were friends of my parents and went to the church of my childhood. He and his wife were the creators of "Megala". One of my many nicknames. I decided to go through my nicknames, well, as many as I can remember.
Meg (my first ever nickname since my given name is Margaret)
Megala
Margar
Midge
Peggy
Peggy Sue
Megaroni
Megra
Meggo
Meggles
Megster
That Girl
Megger
Marge
Moony
Babe
Meg (my first ever nickname since my given name is Margaret)
Megala
Margar
Midge
Peggy
Peggy Sue
Megaroni
Megra
Meggo
Meggles
Megster
That Girl
Megger
Marge
Moony
Babe
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