Friday, May 03, 2019

Everything is Awful

I haven't been sleeping, eating meals, and I cry every day. The pain isn't constant but I don't have the energy to fight it off. The first of May was the absolute worst day since my dad died. Being a new month without him felt like a body blow. If I'm not sad, I am hounded with why's. Why did we go ahead with a partial hip replacement surgery on an 86 year old diabetic with congestive heart failure and no muscle mass? Why did we admit him to that horrible rehab that never turned him or helped him eat? They also left his nurse call button out of reach constantly. I know his health was in decline and he would have passed away even without the broken hip. But it still hurts.  My mom has decided to hold the memorial in July. Maybe I'll feel better after that? 

Monday, April 22, 2019

I Miss My Dad

When he was dying, this helped. Now that I am grieving, this helps. Yesterday I could not stop crying and sleeping. Today I'm just numb.  Here are the songs my family listened to while waiting for the funeral home to collect my father's body:

Friday, April 19, 2019

My Father Died April 17, 2019

He passed peacefully and painlessly. He had a bad night Tuesday where he could not get warm and his breathing got very rapid.  Mom and I had to call the VNA for what to do. We started him on morphine that night and stopped all other medications.  Tuesday was the last time I spoke to my father.

I worked remotely Wednesday at my parent's apartment. Dad started flailing and mumbling around midday so I called my brother. All three of us were in the apartment Wednesday trying to care for dad. My brother and I also tried to get my mom to sleep. I went home around 6:00PM. I had a chance to pet the kitties, catch up with my roommate and have a real dinner with every food group.

I started to feel nauseous and anxious that the moment I stepped into the shower my father would die. He didn't. I showered and was in bed when I got the call from my mother around 10:05. I had never heard her so scared and upset. After I hung up, I immediately started keening and screaming my "Dad is gone! I don't have a dad anymore!"My roommate gave me a big hug and helped me pack an overnight bag. I took a Lyft to the apartment.  God bless that driver. He quietly let me have a complete meltdown in the back seat and got me to my mom's quickly. My brother gave me a big hug looking like a truck had hit him.

My dad looked like a cadaver and felt like stone. My mom was a broken mess talking to the night aide. Something in my brain clicked over seeing the shambles around me. I went into To Do mode. I called my father's brothers and his best friend. In between various emotional collapses, the VNA nurse came out to pronounce my dad's death, and the funeral home came out to collect his body.  All three of us slept in the king bed. The next day, dad's hospice gear was collected, and we met with the funeral home. My mom's sisters came with food and booze. I went home.

Everything feels very surreal. I'm in a hazy together mode then there are moments that hit me sideways where I'm a snot filled crying mess. I picked out a couple of sweaters my father owned to keep. I couldn't stop hugging them and crying.

Friday, April 12, 2019

My Father is Dying

He was in a rehab hospital since March 13. The first week he actually was able to do some rehab on his hip then he got a horrible cough and then he stopped eating. Mom sent my brother and I a message last Thursday that dad's health was in permanent decline. Both of us rushed out to the hospital. My dad was hallucinating and looked like the Night King. Friday morning amidst tears, we discussed stuff and filled out a MOST form. We informed our extended family what was going on.
My father's brothers made plans to come up to say goodbye.
Last weekend, with visitors, my father channeled his inner thespian and rallied for his little brothers. One of my uncles is a doctor, he did his own assessment Monday, and had a good talk with my mom. Basically there is no quality of life my father can recover to. He has lost so much muscle mass, just sitting up wipes him out. He is 5'7" and only weighs 123 pounds. My mom decided to bring him back to their new apartment for hospice. With all of us gathered around my father's bed, he made a speech saying he appreciated all the love and support, he knows he is in a precarious situation, and it's time to get serious about his health. My doctor uncle told him that we all loved him, he had taken care of us for all his life, we will be okay, and he should do what he can.
My dad was moved to the apartment yesterday. He already looks so much happier. His mind drifts into hallucination la la land and can snap back to the present when we ask him a question. I absolutely loved our hospice intake nurse. She had a good warmth and sense of humor. Plus, she is a Game of Thrones fan. I tried to suss out if she had a boyfriend because I would totally approve of her as a sister in law.
I made it to work for two days this week. I liked feeling like a regular contributing worker. My co-workers and boss have been supportive and kind. Two lost their dads and we had good talks. There was one manager who was a clueless bint but it turns out she has no emotional intelligence. My boss is going to talk to her and has my back. I told him I could handle low EQ because the other possibilities were that she's very dumb or a sociopath. Basically, she gave me two projects to work on with a two day turn around. I told her I could work on them but committing to the deadline could be tricky given my situation and please talk to my boss. She didn't understand that so I wound up bursting into tears then leaving work early.
My dad and I had really good talks when he was lucid in the hospital. We got to say what we needed to say. At one point, he dozed off with me sitting next to his bed. I sat quietly memorizing his face. He woke up and told me that I had a "warm calming presence" - which is something I will cherish in my heart the rest of my life. A parent dying is not all crying all the time. It's this weird negotiation between your heart and mind. A thought pops up and then you have to remind yourself "But he's dying". Like when my dad settled into the apartment yesterday, he asked for a gin and tonic. My brother made him one and I was seething - BUT HE IS DYING. Why does it matter? Let him run the show and have what he wants. He's also dying on his own timeline. It could be tomorrow or in two months. My mom, brother, and I are going to work out a hospice care schedule. My brother and I can work remotely.

Thursday, April 11, 2019

Beth Israel Deaconess Medical Center is Horrible

March 2018 I went to the E.R. of Needham's BIDMC because I was in pain and had a bizarre thing happen with my vision and balance. It felt like the entire room tipped and my eyes kept going left and right like a possessed typewriter. I explained my situation in the E.R. was given IV fluids, gave blood, and got a CT scan of my torso (where I was having pain). Another person in a white coat came into my curtained off area asking me questions, interrupting me, not listening to my question, and leaving. I was in tears and asked the next person who came in about that lady.  It turned out, she was the E.R. doc! I was released with a prescription and bullshit paperwork describing what vertigo is. Since I noticed Dr. Marcie Rubin prescribed the meds and I knew she didn't listen to me at all, I read the prescription paperwork thoroughly. It has a bad interaction with SSRIs. I have been on SSRIs since July 2005 so I threw out the medication and wrote a letter to patient relations.

I received treatment a diagnosis and treatment from Mass General Hospital.  The doctor was kind, listened to me, and explained clearly.

December 2018, I had a seizure. I wound up with a ton of tests and appointments at BIDMC since my PCP is affiliated with them. I was on the patient portal a lot and noticed that my current medications and allergies were all wrong. They listed a current medication that was actually something I was allergic to.  I asked Patient Relations for help in January. February rolls by with no changes. I ask again for help and was informed only doctors can change medications on their patient site. Then I asked why are patients asked to update their information before appointments if no one is doing anything with that paperwork?  I asked my PCP for help. She can't help. Out of options and with no one willing to help me, I sent a letter to every specialist I've seen at BIDMC asking them to please update my medications. I got No's but I argued a No to a Yes.  That yes corrected my meds on their site but messed up my dosage in a letter to my PCP about my care. On top of all this, my PCP changed their office phone number without telling any of her patients!

I'm switching my care from BIDMC because I don't trust their doctors or staff.  The lack of attention to detail, people skills, and overall nastiness of employees is unacceptable. Have fun Lahey!

Saturday, March 16, 2019

Keppra Can Make You Crazy

If you don’t sleep well or eat well and are under stress, Keppra can make you depressed, paranoid, and hallucinate. Brain meds are a trip.

Thursday, March 14, 2019


On March 4, in the middle of the snow storm, my dad was taken to the E.R. He had fallen a couple times earlier and had been nursing pain for weeks but that morning he could not even stand. It turns out he had fractured his right hip. His INR levels were off as well. Over the next couple of days, he had blood transfusions. I donated blood and visited him Wednesday. He looked pretty normal and was chowing down on the hospital dinner. So I felt a little less worried. I hadn't really been sleeping since he was hospitalized. On March 7 he had partial hip replacement surgery that went fine.

I also saw "Captain Marvel" that evening. It is really good! I'm biased since I haven't hated a single Marvel movie. And I really like the Captain Marvel character as well. The movie resonated for me since the character is told over and over by her Kree mentor that her feelings are a liability and limit her.  Gee, not something I grew up hearing my entire childhood right before a punch, right? I was too much, dramatic, and a motherfucking bitch ever since I learned to talk. In the movie, Carol finds her full power when she completely embraces who she is. Pretty cool metaphor.

My parents lease for their new senior living apartment started March 1 and my mother has been slowly moving little things over. My dad was being kept in the hospital because his blood sugar levels and fluid retention were bad.  My mom asked my brother and I to come over to help out on Sunday March 10. That day was difficult and has me rethinking my connection with my family. Also, just one bad stressful day should not have that huge an impact. Maybe over time and with some distance, I'll feel better?

I had a fight with my brother. We haven't had a fight for decades. I wasn't completely in the right. I was treating him as a flaky fuck up little brother, I know.  If I'm waiting for someone, I need to know when they will be arriving.  After being told he is running late, 45 minutes pass with no communication, I get worried. In my brother's eyes, I need too much information. He needs to provide too much information to placate me as a compromise. He also asked me to communicate less as my compromise. So, this felt like my one ally in our small fucked up crazy family also thinks I'm too much. I'm forty-two years old. I know who I am and my value. I will not apologize for my needs or feelings.

The three of us visited my dad in the hospital. He looked horrible. He has friable skin. Every time they tried to get an IV in, they ripped a hole. He also started developing sores on his spine so he had to lie on his side. He asked my brother dozens of questions about his life, work, and apartment. I sat at his bedside feeling resentful - not a proud moment. When my dad asked me about myself, I slapped on a smile and talked about Phil and Fi Fi. Then, my dad decided to try to turn onto his back. All of us kept saying over and over "Stop." "Please call the nurse." "You shouldn't do that." But he kept moving. Fed up, I sternly pled with him by saying he needs to listen to me and mom as people who have been hospitalized. That he could re-injure himself or pull out leads or IVs. He put his hands up and pushed the on call button. Yeah, I'm the dramatic one.

To feel better about this horrendous visit, I wound up lifting way too much moving items to my parents' apartment. I felt good at the moment by getting things tangibly done and taking a load off my mom's plate. My lower back has been a wreck ever since.

Here's the thing, I know stress is incredibly high when a loved one is hospitalized. No one is on their best behavior. We all have our different coping techniques. I can't drink on my seizure medication. Sleep has not really been happening. I'm just a walking raw nerve over a parent who brutalized me for decades and yet I still love being injured. Life would be so much easier if I didn't care so much damnit. This round of badness has made me feel rejected by my family of origin. Something I haven't felt for a while. Did I not feel it because I ignored it? On the up side, my feeling needing worrying caring programming is pretty common in my extended family. One of my aunts helped me out a lot by talking with me and giving me a ton of love. I'm also going to take a little break from my small family. I'll be around for help or emergencies but I need space.