When I walked into my sister's living room, I knew something was amiss. Her habit every morning was to open her curtains by about 5:30 a.m., and I usually found her watching the Today show when I arrived at 7:15 every day. Even though her curtains were open this morning, I found her on the couch.
Pris swung her legs over the edge of the couch and sat up, hanging her head low. She could barely speak. I knew something was drastically wrong and asked her to go to the hospital with me and she said no, she'd be OK. Her symptoms weren't the same as previous stroke symptoms, but my instinct kicked in and I knew she was sliding downhill from the congestive heart failure.
I reluctantly headed out the door and began driving out of town, my sister's condition weighing heavily on my mind. I called my husband, who urged me to contact Priscilla's doctor after my appointment. We both realized that the end was coming and she truly needed hospice care.
Just four days prior to this, my sister had again fallen out of bed in the middle of the night, this time not awakening until some time after she fell. She awoke to find herself on the floor, sandwiched between her bureau and her bed. The toes of one foot were wrapped around a bureau leg and she was sore and bruised. Her sugar was so low that she couldn't reach her phone or mints she kept on the bedside table for sugar lows.
Hours later, Pris was finally able to crawl to the bedside table and take enough mints to bring her sugar back up. She crawled back into bed and went to sleep. She never told me about the fall until much later the next day. I checked her over thoroughly and didn't see any bruising or any other damage and she adamantly refused to go to the emergency room. All she would allow me to do was apply ice to her back and rub some lotion on the areas where she felt sore.
The fall was playing through my head as I drove to the dentist's office. After my appointment, I called my boss and told him I would not be into work. I then headed back to my sister's, calling her doctor as I drove.
As is typical in our small town, the doctor's nurse, who did have my sister's power of attorney (POA) on file and healthcare directives, pointing me out as her power of attorney for financial and healthcare, declined having the documents on file. Whether she was too lazy to look or not, I have no idea, but what was the point of making sure they had these documents AND my sister signing the HIPPA form each year appointing me as the person they can talk to?
What I did get out of the conversation, was to get Pris to the emergency room where she could be diagnosed and, thankfully, the doctor happened to be at the hospital that morning.
I called my sister, who, despite feeling pretty lousy, was always prepared for this kind of thing. I had her pull out her healthcare directives and power of attorney papers for me and make copies. She always had a bag packed for hospital visits, so she dressed and grabbed that too, making sure she had her insurance cards. She didn't give me any arguments about going to the hospital.
We both knew what was coming, what she had known was coming for the previous 11 years.
I also knew my life was going to drastically change as of that moment.
Headed to the hospital one last time
Once admitted to the ER, they took blood from Pris and the doctor arrived to tell her that her BNP levels, that indicate the fluid retention in the body, were obscenely high. BNP is a hormone secreted in the body when congestive heart failure is present. We had been told many years before that a normal person has a 100 BNP, and at that time, in 2005, Pris was about 1,000.The day she went to the ER, her levels were around 48,000. The doctor was astounded she was still alive. Yet, he never said a word about it being "end stage." And the fluid retention was not as evident this time as in the past. It had spread throughout her body.
I pulled him aside and requested that he determine her survival rate at this time and that I felt sending her home in hospice care was the protocol.
Instead, he admitted her to the hospital and began inundating her with life-saving measures – despite her healthcare directive stating otherwise.
For the next 2 weeks, the doctor would have a nurse come by in the morning to convince my sister that she needed the life saving measures and get her to sign off on them. My sister, who had spent years accepting her impending death and prepared for it, now faced the fear of dying and despite her healthcare directives, signed off on the papers every day.
Nearly four days in ICU does nothing to help
Three days after she was admitted, it was determined that the IV drip to bring down the BNP count was not working, so the doctor admitted her to ICU, once again getting her to sign off on it.She was there for nearly four days with no significant positive results or reduction in fluids. Meanwhile, in this tiny hospital, there are just a couple if ICU rooms, all separated by a curtain from each other and a small counter in between for the nurses to use as a work station.
The hospital was very noisy and my sister complained that the second night she was in ICU, there was a large ruckus at that end of the hospital involving a woman visitor claiming that a hospital worker had stolen her purse. This claim resulted in staff being called in, mediation and a lot of noisy people running up and down the hall.
My sister also claimed that around 2 a.m. the next morning, a slew of hospital employees kept coming to that wing of the small hospital to gossip about the purse stealing incident. Some of the employees, she claimed, were smoking in the hallway. Having smoked for 35 years prior to her 1993 stroke, my sister definitely could catch the odor of cigarette smoke pretty easily.
Myself? I was already horrified by the fact that the hospital had signs posted at every driveway into the hospital noting that it was a "smoke free campus." There was even a sign at the visitor's entrance, positioned right next to a large container for disposing of cigarettes. Not a day went by that someone wasn't smoking outside the entrance next to the smoke free campus sign.
Early on the fourth day in ICU, my sister's doctor determined that ICU wasn't helping her, so he moved her back to her room. Her BNP levels had fluctuated from 48,000 and gone as low as about 28,000, but then would increase again and again. They simply would not stabilize.
No improvement, but the hospital stay continues
For the first week, my sister seemed relieved that someone was helping her. Meanwhile, my boss had requested that I take my work computer home so that I could work on a large magazine project that I'd started prior to Jan. 1 and had a deadline looming. I worked from home the first seven hours of the day and then would go spent several hours with my sister.My husband and I began working on my sister's home to prepare it for her to come home, knowing I would be moving in with her to look after her. We steam cleaned her floors, cleaned out cabinets and refrigerator, rain the vacuum, did laundry, cleaned the bathroom and paid her bills for her.
After 10 days into my sister's hospital stay, we knew she wasn't getting any better and our attempts at contacting her doctor were futile. He didn't return calls and we couldn't catch him on rounds. A nurse finally offered to text him for us, after we'd gotten up early and sat at the hospital for hours on end.
Twelve hours later, the doctor came in to see my sister and informed her she was at end stage congestive heart failure. She was dying.
But, he informed her, he was still going to try to lower her fluid levels and try to extend her life.
He deliberately avoided talking to us and my sister, at this point not wanting to accept the fact that the long-prepared-for event of her death was finally upon her, was letting the doctor continue to treat her.
We never tried to convince her otherwise. Sensitive to how healthcare professionals can become suspicious about a family member's intentions, we let Pris talk for, and decide for herself.
One major thing she noted throughout her stay was the lengthy shifts the nurses had to work. One CNA never washed her hands and never wore gloves. Another never let my sister wash HER hands after using the potty. Can you say "germs?" As this was occurring, I was reminded of how our Dad got the highly contagious C diff virus when in the same hospital in 2002.
Early in her stay, my sister began asking me to write down everything she was telling me ... just in case.
Pris decides enough is enough, it's time to go home
Nearly two weeks into her stay, Pris began growing weaker. Her voice was lighter, strained. Constipation set in and she became even more uncomfortable. Meanwhile, her BNP levels never improved.The first time we managed to catch the doctor after he declared her in end stage CHF, he noted that an IV was still hooked up to her but not dripping and hadn't been dripping for 10 days – though he admitted it was an IV he had canceled.
Another time, an IV was ordered for her with a special medicine and she was hooked to the IV, but it wasn't turned on until 12 hours later when the physical therapy person was trying to maneuver Pris from her bed to her chair and he noticed the IV wasn't dripping.
To add insult to injury, when that IV had been put in, the staff member had had so much trouble finding a vein, that we found my sister with the entire top of her hand black and blue from bleeding beneath the skin.
I really don't blame the staff for all of these things. It's an HCA hospital and they are notorious for lousy service, over-charging insurance companies and patients for services the patient doesn't even receive. We had, ourselves, filed complaints against them with the attorney general's office just the year before.
Yet, HCA has taken over most of the hospitals close to where we live. There is no other choice.
The staff is over-worked and under paid. Still, they were always respectful toward my sister and treated her well ... for the most part.
The doctor? He ran up over $100,000 in hospital bills trying to keep my dying sister alive, knowing she was at end stage. How ethical is that?
Finally, one day shy of the two week hospital stay mark, my sister called me at 5 a.m., to tell me she wanted to come home and I was to come and get her. NOW!
When my sister made a decision, no matter how sick she was, the savvy businesswoman persona emerged.
Trying to get released from the hospital is a 12-hour ordeal
My husband and I got dressed and were at the hospital by 7 a.m. Pris was dressed and ready to go home and waiting for the doctor. He had been sent a text by my sister's nurse that she was demanding to go home and he, in typical doctor fashion, made her wait until 10:30 a.m., before he visited her, AND he sent his wife (a nurse practitioner) in first to try to convince Pris to stay.However, when my sister has made up her mind, the decision is done. She stood up to the nurse and that was that. The doctor was called in and he made a great speech of how Pris had already lived way longer than he ever thought possible.
Meanwhile, during the entire morning, I had been trying to convince Pris she needed hospice care. No, she insisted she did not. She just needed me. I kept telling her that I needed the hospice support and still she said no until an orderly came in to change the sheets on her bed and overheard us. The gal asked Pris if she could tell her a story and Pris agreed.
The orderly proceeded to tell my sister about her own mother's death the previous fall and how she could never have gotten through it without hospice care. By the time the woman was finished telling her tale, my sister looked at me and said she would agree to hospice care.
The one thing the doctor did do that had my seal of approval during this tenuous two-weeks, was upon signing her out for release, he told her she was going on with hospice care ordered.
The doctor then suggested Preferred Hospice that operated in our town. He informed us he was on their board of directors and he also stated that he could offer the hospice care as being outstanding service, but we were in no way obligated to sign with them.
Nevertheless, I felt like the decision for where to choose hospice care was easily presented to me and I agreed. The hospice social worker was called and, in a few hours, had come in to meet with me, have me sign the papers and an appointment was made for 6 p.m. that night for the R.N. assigned to Pris to visit with us at her home.
Considering that my sister called me at 5 a.m. that morning to come home, it was 5 p.m. that night before her doctor finally released her and the paperwork had been completed. That 12 hour period is a ridiculous amount of time for a sick person to have to wait, as well as the family. That particular day happened to signify the arrival of our brother and sister-in-law, who had planned to come out for a few days to see Pris while she was still lucid.
We were all exhausted. My brother and his wife had been traveling all day and hanging out in my sister's hospital room. We barely got Pris settled in her living room before the hospice nurse arrived.
The nurse was sweet and probably in her mid-40s. She sat down with Pris, myself and my sister-in-law to explain the process. We thought, "Wow" this will be so helpful.
Wow, we were so wrong. Thus, the hospice nightmare began.
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