The Last Ten Weeks
Exactly two weeks to the day after my mother passed, my father removed my younger brother, Daniel, as his Health Power of Attorney (HPOA) after six years and appointed me as his new HPOA.
They had a huge fight, and my father was worried that my brother would “leave him to die” and felt that the way my brother behaved during my mother’s passing was a red flag.
To be clear, I’ve chosen not to have a relationship with my brother. I didn’t want my children exposed to his substance abuse, his racism, his abuse towards my father (I have plenty of text messages and emails to back this up), and towards the girls he would have relationships with.
I foolishly put aside a lifetime of toxic behaviors, put aside my feelings over the abuse I had endured as a child through my twenties, and threw myself full force into this role of being my father’s advocate.
Immediately it became apparent that the role wasn’t as simple as pointing to a sheet of paper and saying, “He has a DNR.” I would get daily, if not multiple times a day, phone calls from his nursing home facility that my brother put him in years ago (without me knowing for weeks). My life became consumed with dealing with my father, his health, his living situation, his medications, his refusal of treatments, and so on.
It left me unable to even deal with or process my mother passing so suddenly. It also added a lot of stress to my already high cortisol levels. But, I was determined to do everything I could to improve his health and quality of life, even if he never extended such courtesy to me or my twin sister growing up.
During the last nine weeks, he had to be hospitalized twice. I had to authorize procedures he should have had years ago. I discovered he’s had severe heart issues that haven’t been treated for years. Oh, and nothing like finding out he had been hospitalized for two weeks in early February because my brother never told me or my sister.
I had staff members from his nursing home, his doctors, and the hospital staff tell me they were relieved I was in the HPOA role because my brother would refuse procedures my father desperately needed. My father would refuse treatments until it was almost too late to receive them, partly out of fear and partly because my brother doesn’t believe in science; for example, he doesn’t believe COVID is real and is unvaccinated for it and would convince my father that he isn’t sick, doesn’t need any treatments.
I asked my twin sister to put aside her own trauma with him, just as I had to, because I knew I would need her support, knowledge, and skill set to get through everything. Which basically boiled down to me high-pitched screeching, “I CAN’T DO THIS!!! WTF IS HAPPENING!!!” and sobbing. Same thing, except the first sentence, sounds more sane.
My twin sister, her husband, and I formed what I called the “Dream Team.”
We spent every moment of the last nine weeks visiting him, talking to his nurses, holding his hand, spoon-feeding him (because he would refuse to feed himself), physically cleaning him up, and so much more.
I had to clarify to everyone that he was entirely deaf. He is not hard of hearing, but he has a genetic disorder called Otosclerosis, abnormal bone remodeling in the middle ear that he inherited from his birth mother. He’s in the 98% percentile. I would explain to every single person working with my dad that he had some hearing, with the use of hearing aids, through the late 80s, but by the mid-90s, he was entirely deaf and that he had a cochlear implant that he didn’t take care of so it no longer functions. I understood he “spoke so well!” but couldn’t hear them. I even had some nurses at the hospital try to tell me he could hear. That would make me laugh and laugh. It got to the point where I started sounding like Bobby from King of the Hill in the episode where he says, “That’s my purse!” well, that was me with “He can’t HEAR YOU!”
His only form of communication is trying to read lips, writing on paper, or my favorite is using cell phones and notes apps or text messaging.
After multiple ER visits, he accepted that he would need to be hospitalized to have a procedure he should have had years ago but that my brother and father refused to do. Of course, I approved the procedure that damn near saved his life, held his hand, and stayed with him from start to finish.
When I came to visit a couple of days later for another procedure, this one was minor, but he refused to do it unless I was physically there to hold his hand per the hospital staff. His nurse that day was absolutely awful. AWFUL. Overall the nurses were great, but this specific one… holy hell. She told me he could hear, refused to scratch his back where the procedure had been done (for his lungs), saying I should do it since I was his daughter, ignoring that I was along with other staff, holding him on his side and communicating what the staff was doing to him, ugh it still pisses me off! Anyway, she refused to order him his lunch as he could not do it himself, which is a much larger issue for those unable to hear or speak, so I ordered his food, and he said I had to feed it to him. So cue him loudly, calling out the food items he wanted for every single bite. POTATO! SOUP! MILLLLKKK! SOUP! ICE CREAM! ICE CREAM! MILK! ICE CREAM! And so on for 45 minutes.
He went back to his nursing home facility, only a few days later to go back to the hospital because his infection was not dying off.
During this last minor hospital stay to get some antibiotic IV therapy, I called the nursing home to ask them to put my father’s cell phone and laptop somewhere for me to pick them up to bring to my father so he could communicate with others. But unfortunately, I got told that my brother randomly showed up and took the devices
At the same time, I rushed to the emergency room an hour away to be there for our father. I had no idea why my brother, who ignored the previous nine-day hospital stay, which included two invasive procedures, just as he had dismissed the emergency abdominal surgery my father had on October 10th, 2021, would all of a sudden go to his facility and take the needed communication devices while claiming that he was bringing them to the hospital and then proceeding to start a group text with me, my sister, and my brother-in-law that he showed up to our father not being at the nursing home, that they refused to tell him where our father was, and demanding to be told all of the information I had.
It confused me because why would they let him take the devices if they knew he didn’t know where our dad was? So I brought this up to the facility, and they said that because my brother would take the devices to the hospital on previous trips, they assumed that was what was happening.
So while dealing with my father for hours in the ER, who was altered and ripping out his IVs, throwing things, and screaming, I quickly texted my brother to ask him to return the devices to our father or his facility. He refused. After the ER staff said I should try to go home, because I had been there for hours and he was finally asleep, I called the facility to ask them to wait to tell my brother any hospital information until my father was moved to a room. Up until that point, he was still in the ER, and we didn’t know when he was getting a room on the upper floor.
I headed home, and as soon as I came inside, the texts from my brother started flooding in.
“After several phone calls and a trip to *a different hospital* for nothing I am here at *the hospital dad is at* with our father currently.”
“I am extremely concerned for his well-being.”
I was like, WTF is he talking about? Why would you start stalking hospitals when I told you I would let you know what was happening when I myself was told what was happening? Why are you there after visiting hours? What triggered all this when he didn’t even speak to our father or show up when dad has significant issues? Where was this concern when I told you Dad had to have invasive procedures just the week prior, and you couldn’t even visit him? Or when Dad almost died in 2021, and I could barely get you to be on the phone with me, much less talk about our father or even show up to the hospital? But sure, some IV antibiotics for a few days are a massive cause for concern, apparently.
I firmly believe something happened in my brother’s life to cause him to suddenly be frantic about becoming HPOA again.
So, Dad was there for some antibiotics, and the only reason was that the infectious disease department had to be involved as my father had an e-coli-resistant bacteria that he’s had all year (unbeknownst to me until I got HPOA).
The staff at the hospital was excellent, and two individuals from my father’s nursing home facility went above and beyond for him and me during all of the last nine weeks.
So skip forward to Thursday, May 11th, when my father was taken back to his facility. I had a phone call with his facility about his condition, the paperwork we needed to get, and our daily routine phone call overall.
When I got up on Friday, it was a phone call with my now favorite person at his facility. We discussed how his health has dramatically turned for the worse this year, particularly since it began after that “secret” two-week hospital stay in February. We discussed my concerns about my brother, how he was sneaking in after visiting hours, per the hospital nurse, that he wasn’t letting our father sleep, that he was holding the phone and laptop hostage, and that I didn’t know if this was typical behavior in general or the standard dynamic between my brother and father. A lot of people believe my brother would revoke the DNR. We talked about how my father’s heart problems have gotten worse, and now he has what is called an aflutter with pauses, and his risk of stroke is very high. We discussed the DNR and comfort care.
We got off the phone as she was going to see if a cardiologist had evaluated him during this recent stay and was going to contact me to let me know either way.
Not even a full hour later, I got a third email of the day from the social services woman, with the following:
Hey, Sarah. I just wanted to update you and let you know your dad called me to his room to change his POA back to Dan. He has been very lucid today and very able to make his needs known so I did help him with this. If you have any questions, please let me know.-social services
I was on the phone with my best friend when the email came in, and I burst into tears out of pure shock. What just happened? Why did it happen? I didn’t know what to do with myself! I was waiting for the follow-up to see if he had a cardiologist evaluation during his recent hospital stay. I was working on finding a cardiologist and researching about the aflutter so I would be more educated and better able to advocate for him.
Then shortly after, the texts from my brother started yet again.
“How hard is it to send me a text to update me?”
Again, six whole years, multiple hospital stays, and who knows what else, where he wouldn’t let me or my twin sister know via phone, text, email, or carrier pigeon. When he didn’t ask for updates during the last nine-day hospital stay with two invasive procedures, but now it’s all about the updates?
I explained that I didn’t have updates as I was no longer HPOA. His response was, “What did you do?”, I said, “Cried”. I didn’t realize he didn’t mean literally but was being negative, insinuating I had done something to our father to cause this.
After some back and forth of him putting me down, I finally said, “It doesn’t matter anymore. My involvement is over, per the email.”
So naturally, his responses were, “Good judge of your character Sarah,” and “Way 2 Be”. (I kept his spelling here.) My sister, who, during all of these texts the last few days, stayed out of it, felt terrible on my behalf because I was distraught and felt betrayed, said, “Sarah is no longer HPOA. You are. She’s no longer involved. Done.”
Just shy of five hours later, he responded, saying he had just found out he’s power of attorney for our father again. Because the text from five hours prior from my sister wasn’t clear enough? His choice of wording also confused me because he was never removed as a financial POA as much as my father considered removing him, merely as a health POA. I wonder if my brother thought it was one and the same.
I texted my father asking for a reason, any reason. I needed an explanation as to this sudden change.
I finally got a text from him on Mother’s Day, “Your brother said you were causing trouble with the office. And threatened to throw me out.”
I responded, again in shock. I said absolutely not and how hurt I was that he would believe such a thing. That he should have asked the staff to verify such an awful accusation.
I don’t understand how a very sick older man who, by all accounts per the hospital and his nursing home facility, was in and out of an altered state for weeks now, was somehow lucid just enough for the social services woman, who I do believe has a personal issue with me at this point, to feel that he was making this serious decision of his own volition.
I keep adding salt to the wound, by re-reading all of the emails I had with the social services woman. Every time I had a non-health related question and would ask her for a phone call, it would turn into a scheduled phone meeting with an entire team of individuals, a week or more later, for me to ask about possible physical rehab, or the terms of the DNR, if he had any paperwork I needed to be aware of, etc. Or when I would email about highly concerning issues about some staff members’ behaviors towards my father, only to have a nurse call me back instead, even though it wasn’t about his health. She would also get upset in these emails, about anything that she felt was hostile to my brother.
Like earlier in this post, when after 7 pm, I asked the nurse not to tell my brother which hospital our father was at until he had a room and was admitted because I didn’t know 100% if he would be staying at the hospital or sent back to his facility. I was informed via email a few days later, “Nursing told me your requests regarding Dan and we cannot follow them. The nurse on duty said your dad was asking to talk to Dan when he was leaving so he obviously wants him involved and we are going to honor his wishes.” It’s not like I asked for all contact to be ceased or to withhold all medical information entirely, only to wait until we knew where my father was actually going to be going forward.
I randomly got another text from my father, a few days later, where it was apparent it was sent to me by mistake and that he intended to send the text to my brother. Now the text was damn near gibberish, “Hreaat, all the bill you brought test hahe have been tossed NY by hk” which translated means, “Great, all the bills you brought were tossed by housekeeping.” Because my father has always paid my brother’s phone bill out of his own pocket and managed his taxes, vehicle registrations, utilities, and mortgage, I once brought it up to the nursing home staff, and the response was, “Still?! We told him to stop doing that!”
I have a mountain of texts from my father about my brother, for example, about his ashes, “Dan would dump the ashes on the grill.” Or about his possessions, “Everything I had is at Dan’s house and I know he threw everything away.” Or when right after my mother died, my sister and I made sure to get the child-sized rocking chair our great-aunt gave us kids. My brother made a big deal that he wanted it, so I made sure to drive it back. Anyway, he was telling our father, “Dan said in his tantrum he said he was gonna smash it with an axe to piss you off.” Obviously, he’s not getting the chair. Not like it belonged to him or was left for him by our mother. He also didn’t like how my brother refused to wear a mask, in a nursing home with active COVID outbreaks, “Dan comes here and doesn’t wear a mask.” Or how my brother is upset that my father talks to me, his daughter, “Well I just don’t grasp the problem Dan has with you, he bitches at me that I text you.”
So right now, here’s where I am—exhausted, sad, confused, betrayed, worried, and scared. And that’s all on top of everything else I have to deal with! I repeatedly put myself into my PTSD trigger areas, caused multiple 3-4 day long migraines, put aside my own health, time, money, and sleep to be there 110% for my father, to be, yet again, tossed aside like trash. I don’t see any solutions, I feel like I should have known better, and now it’s back to not knowing if my father is, bare minimum, ok.