The bottom line is that Pris had kidney failure in addition to end stage congestive heart failure. What that combination did to her made her pretty miserable.
But then, the business of dying isn't for sissies.
An odd, supernatural moment
Saturday and Sundays we didn't have the overnight gal helping, so we took care of Pris. Sunday night she wanted to try sleeping in her recliner, so I curled up on the couch. We both dozed, the TV turned down low.
Several hours later, well after midnight I awoke, thinking I heard something. I lay there listening when a cold, wave of something brushed by me – the length of the couch where I was laying. I felt no fear from it, but it was clear that some message was being delivered.
Perhaps it was an angel watching over us, or my parents were there. Pris had reported seeing them constantly throughout these past weeks.
I had no fear, but felt the presence nonetheless. I immediately got the impression that Pris would not be with us much longer.
A visit from family causes Pris to turn the corner
We made it through the weekend with few problems and Pris was feeling fairly decent those first few days after the catheter was removed. Overnights were rough and she was resorting to odd behavior. One night my husband came home and found Pris putting the oxygen mask on the her teddy bear. Other times I would catch up getting out of her chair and trying to walk on her own. I couldn't take my eyes off her for a moment.
Still, we made plans to go on a drive Wednesday, when my son could help Pris to the car and get her portable oxygen in the back seat for her. It was also the day when no one was scheduled to visit.
Late Wednesday morning I received a phone call from my cousin, Emily, who was visiting her mom, my mother's baby sister in Kansas City, Kan. They had a free afternoon and wanted to drive up to see Pris that day.
I really didn't have to ask Pris, it was a no-brainer – as she LOVED our Aunt Alice – but it meant no car ride. I was right after all – Pris was excited to see Alice and Emily and so was I.
Our Aunt Alice and her older sister, Tolli, adored our mother who was their half sister. When our mother was dying in the hospital in 1982, Tolli and Alice took time off from work to sit with our mother for days and days, taking shifts with our dad. They were with her right to the end.
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| Our mother's baby sister, Alice - left, came with her daughter, Emily, to visit Pris about six days before she died. It was after this visit that Pris decided to discontinue all food, oxygen and medicines and to simply let nature take its course. |
We spent the entire afternoon reminiscing, laughing and enjoying the memories. Pris perked up nicely, but as with everything, all good things must come to an end. About 5 p.m., the girls got up to leave and Emily found her car's battery was dead.
She called AAA and I went to get us some fast food as it was dinnertime. Pris was dying for a hamburger and fries, which is what we were planning to do if we had gone for a ride.
We managed another 90 minutes of visiting before AAA came and got the car started. When Emily went to the car to tell her mom to come in and say goodbye, she told us her mother was sobbing. Alice knew it was going to be the last time she saw Pris on this earth.
Despite being niece and aunt, Pris and Alice were only nine years apart in age and had gone through our mother's death together. That's a bond you never forget.
It was a bittersweet farewell for them both.
A rough night with the caregiver
That night after our aunt and cousin left, Pris announced that the hamburger tasted like cardboard and she was disappointed. I learned much later on that as one enters the final stages of dying, food no longer tastes the same.
Our caregiver came to stay with Pris overnight and we went to bed. Sometime around 2 a.m., we were awakened by Pris shouting at the caregiver. I jumped out of bed as my phone rang – it was my sister – asking me to get her away from the woman.
We were worried by the next morning. We needed the caregiver, but she was a bit overzealous with Pris and hovered too much. Pris alwaysquite the independent woman, didn't like anyone hovering and barking orders unless it was me.
Pris didn't sleep at all that night and we resigned ourselves to talk to the caregiver the next evening to back off on the oxygen and to honor anything Pris asked her to do.
The time has come to let go
After breakfast, I spent some time alking with Pris about her spiritual needs. Despite growing up in the church, our dad being an Episcopal minister, Pris had stepped away from attending church years before. She had refused to meet with the chaplain prior to this day, as she was determined she didn't need it. She did, however, allow me to have him call on me whenever I felt it was necessary – and I had taken advantage of that hospice service several times.
I loved our chaplain. He was full of the spirit and comforting to have around. My faith is very strong, but I had worried about my sister. I knew something was bothering her and I didn't want her to reach a point of unconsciousness without making her peace first.
The hospice manuals always tell the caregiver(s) to tell their loved one that it's OK to let go. Often a dying person holds on until they've made peace with something that's on their mind, or perhaps if they are waiting to see a family member one more time.
I knew that morning after having the rough night with the caregiver that my sister was beginning to lose her lucidity. So I spoke with her, prayed with her and begged her to let me call the chaplain.
Finally, she relented. He came immediately and my sister was at last able to tell him what had been holding her back all that time.
It wasn't as earth-shattering as I thought it might be, but it sure was enough to have weighed heavily on her mind. He read biblical passages to her and then we both prayed with her.
Shortly after the chaplain left, the ditzy L.P.N. nurse came by. She checked Prissy's vitals and announced she was fine and that her tiredness was the fault of the errant overnight caregiver. She did tell us that if Pris didn't want to use the oxygen, we were not to make her use it.
Otherwise, she simply pointed the finger at exhaustion as the reason my sister was barely coherent. Again, this is an inexperienced nurse checking on a woman in the end stage of congestive heart failure, little oxygen getting to her brain, who is becoming incoherent and the professional decides it's all due to exhaustion.
The gal waltzed out the door at 11:30 a.m., and my sister fell asleep immediately. She only awoke one more time between that time and Saturday morning, sleeping for nearly 48 straight hours.
She did, however, awaken long enough on Friday morning to announce to myself, my husband and the overnight caregiver, that she wanted no more food, no more pills, no more insulin. She was done with it all. Why, she asked, should she keep herself alive any longer.
Considering Pris had seen the one other family member she wanted to say goodbye to and had confessed what was laying heavy on her heart to the chaplain, she had done and said what she needed to do before letting the final process of dying begin.
Unfortunately, hospice would have issue with this.
Hospice steps in and tries to take my sister away
As soon as hospice was officially open that Friday morning, I called to speak to a nurse. I was more concerned about my sister not having her insulin than anything. Though in retrospect, if she was ready to die, then what difference did taking the insulin make?
The nurse I spoke with reassured me that it was OK and normal for Pris to stop taking her meds and that she'd alert the R.N. to this new development and have her call me.
Two hours later I hear voices in the living room, but never heard the doorbell. I was in the bedroom going through some papers when my husband came in to get me – a grave look on his face.
"It's Julie, the R.N., and the social worker (I'll call her Tricia for the sake of privacy)," said my husband. He informed me that Julie and Tricia just barged into the living room without knocking and were talking loudly.
"What are they doing here," I asked. I was expecting Julie, but not Tricia.
"I don't know," said my husband, "but they don't look happy."
I went into the living room where my sister was dozing in her recliner and found the nurse and the social worker on the couch waiting for me. Their faces were serious and grave.
Julie jumped up after I sat down and knelt by my sister, turned to me and gave me a very dirty look before facing Pris. She got up in my sister's face and began quizzing her about stopping her medications.
Julie kept pressuring Pris - her mouth inches from Prissy's face the entire time. She was shaking her arm to try to get her to awaken and kept commanding her to "Focus!" Every few minutes, Pris would open her eyes and Julie would ask her again, "Pris, why do you not want to take your meds?"
Finally, after about 15 minutes, Pris said, "I want to take my meds. Why would I stop?"
The social worker and Julie turned and smugly looked at me as if to accuse me of trying to take the meds away from my sister in order to hasten her death.
This all followed weeks of the nurses taking Priscilla's vitals and patting her on the shoulder announcing, "she's just tired." What did they think the dying process is? They never addressed most of the symptoms, the failure of the sleeping and pain pills, among other things. Meanwhile, I had barely left my sister's side for four weeks and I knew exactly what MY sister was going through. I knew, without a doubt, that Pris had less than a week left.
I spoke up and said that Pris not only told me she was not taking her meds anymore, but that she said it in front of my husband, who was sitting in the kitchen listening to what was occurring in the living room, and the overnight caregiver.
Julie continued for another 15-20 minutes to get in my sister's face, pulling on her arm to wake her up and kept asking her why she didn't want to take her meds.
Finally, my sister awoke, her eyes clear as a bell and she addressed Julie firmly, "I. Do. Not. Want. To. Prolong. My. Life. ... Why would I?"
Julie turned and looked at me again, her pretty face turned into an ugly mask of anger at me. She asked Pris again if she understood that she was hastening her death by quitting the meds and food. Once again my sister answered the affirmative.
Julie huffed and stood to look at me. She announced she would have none of it unless the doctor agreed to it and she was leaving to go find him right away. She said she would be back. Julie and Tricia stomped out the front door, leaving my husband and I with our mouths agape at the spectacle we'd just witnessed.
I completely felt like I had just been accused of trying to hasten my own sister's demise. It frightened and infuriated me at the same time.
Within 30 minutes, Julie was back at the house, once again storming through the door, though this time, she brought the chaplain with her.
She still had attitude, but she announced that the doctor told her that Pris had been his patient for many years and he expected nothing less of her. He said Pris knew her own mind, even at this stage of the game and would control her death as she controlled her life.
I breathed a sigh of relief and thought the ordeal was over.
Little did I know.
Hospice asks me to leave my sister
Hot on the heels of telling us the doctor approved of Pris discontinuing her meds, Julie looks at me and says (in third person) that hospice felt I was overwhelmed and they wanted to offer me a respite.
The idea of a respite was explained to me when I signed Pris up for hospice care. This is a time to help the caregiver if he/she becomes too overwhelmed. Hospice will step in and give the caregiver a week off. They will take the patient to another facility - out of their home - and care for them while the caregiver stays away for that week.
I looked at Julie and looked at the chaplain and caught my husband's eye in the kitchen. I was furious to say the least.
"You want me to leave my sister for a week?" I asked incredulously. "She's days away from dying. I promised her I would never, ever leave her during this process and I will keep my promise to her," I told them firmly.
Julie continued to try to convince me to leave, citing that I had too little sleep, too much stress and couldn't cope well. She had gotten her calm voice back and was trying to coerce me into leaving. She did a great job of spinning the last few weeks of how stressed I seemed.
I got a sick feeling in my gut, terrified my sister would be separated by me and I would have failed her.
My husband suddenly flew out of the kitchen and cornered Julie who had been trying to blame me for a number of problems.
My husband, up until that point, had allowed me to make all decisions, supporting me whenever I needed it. But he'd had enough.
He confronted Julie about the L.P.N. Tanya. He told Julie everything from the mask fiasco to the lackadaisical way the girl had handled the catheter, to the way she would just pat my sister on the arm and call her exhausted.
Julie tried to spin the mask business by saying Pris was a mouth breather and the mask wouldn't help her anyway. She used every medical term she could come up with to confuse us and turn the situation away from focusing on the inept L.P.N. She closed her mouth abruptly when my husband reminded her that it was SHE who recommended the face mask in the first place.
Julie chided me for the overnight caregiver causing problems, but I assured her that I'd spoken with the gal at length the previous night and she and Pris had had a quiet night.
She snidely said, "Oh, how do you know that for sure?"
I coldly told her, "Because we STAY THE NIGHT HERE!"
"What?" she asked. "You don't go home to sleep?"
"Um, no," I told her. "I promised my sister I would be right here if she needed me and I intend to keep my promise.
The chaplain stepped in and defended the overnight gal – announced she was most likely doing what we had asked in the beginning – to keep the oxygen on my sister. He completely supported this overnight person whom he didn't know and had never met.
Then my husband turned the tables again. He informed Julie that I had called Tricia the social worker, a few weeks earlier and she had never called back. He then cornered the chaplain to see if he remembered telling me he knew I had called the social worker – which he did.
There wasn't much Julie could say at that point. We unloaded every problem we'd had up to that point with her, right down to Tanya informing us that she and Julie were bad about keeping records on the patients.
What? Why is that? Because the patients are dying? That's like asking for a law suit. Tanya had giggled when she made those comments like this was not the serious situation it truly was.
Finally, Julie, by now very frustrated and having been squashed by not only the doctor, but by the chaplain as well, got up and left.
The chaplain stayed and prayed with us.
I spent the rest of the day with a sick feeling in the pit of my stomach. What had we gotten ourselves into with these hospice people and how far would they go?
Meanwhile, Pris snoozed on, oblivious to the controversy that had swarmed around her. She had less than four days to live.
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