The next morning, the overnight caregiver tried to get Pris to eat, but she continued to refuse food and to have her blood sugar checked, as well as refusing her meds.
My husband and I had managed to sleep that Friday night and it was a good thing because it would be days before we would sleep more than an hour at a time again.
Months prior to this date, I had signed up for a color therapy class in Kansas. I'd already paid for the class and my sister, earlier in the week, had insisted I still attend. My husband echoed this sentiment Saturday morning, telling me that he was capable of doing everything for Pris that I could do. In fact, there was slightly less to do since she wasn't taking meds or her insulin and was refusing oxygen too.
Since Pris had slept for nearly two days straight, we anticipated that she would continue to doze, much as our father had done years before and her passing would be peaceful.
It was with this in mind that I skipped out the front door ready for an entire day of learning, fellowship with friends who also practiced this healing medium and some prayer time.
During breaks at my class, I sent my husband texts to inquire about my sister. He insisted everything was fine and quiet at the house.
God bless him – he didn't want me to worry or leave my class early since I am required to complete a certain amount of class time each year to maintain my practicing certificate. He never told me that my sister had taken a turn for the worse the minute I walked out the door.
Terminal restlessness begins
I returned to my sister's home at 7:30 that night, 12 hours after I had left. I walked in the door to see my sister staring at me wildly – her eyes not quite focused – and my husband in a chair by her side, stroking her back, clearly relieved to see me.
I knew something was amiss.
My husband informed me that immediately after I had left that morning, Pris began writhing in her chair. She would recline, then sit up, then snap the recliner forward, then recline and do it all over again – never stopping once. Meanwhile she would thrash from left to right and back again, alternating this with sitting up and then reclining. Sometimes she would swing her legs over the side of the recliner, trying to escape the chair.
She refused to go into her hospital bed. She announced she had to urinate about every five minutes all day long and my husband told me that she was not voiding anything.
She refused to put an adult diaper on – we had the pull-up kind, and did finally get them on her, but she refused to void in them. Or so we thought – she actually was unable to void. Her kidneys were failing.
My husband announced he had been unable to leave her side for even a minute all day. He'd been simply sitting there, rubbing her back, holding her hand and talking to her for over 12 hours.
To me, my husband is an angel. There's not too many men out there who will go that extra step to do this for their sister-in-law, or wife for that matter.
I had had a long and exhausting day and so had he. It was the caregivers night off, so we decided to get through this together – sleeping in shifts all night long.
There is still humor despite the end looming close
As we sat with my sister through the night, my husband informed me that my sister had not lost her sense of humor during the long, terminal day.
At one point, when she told him she had to urinate, he stood her up and helped her to the porta-potty and then announced, "Pris, I have to pull your pants down," (this is something I usually did for her)
She replied in a sing-song voice, "Oh no, that's a no no," while shaking her pointer finger in his face, her mouth in a wide grin.
At another time, during the terrible writhing and restlessness, she managed to throw herself out of the recliner into a standing position. He got hold of her and asked her quietly, "Pris, where are you going?"
She replied, "This way," crossing her arms over each other like the scarecrow did in "The Wizard of Oz."
My sister also informed my husband that she loved him. This was a milestone for her because she was not a hugger, nor was she easily able to voice a sentiment to anyone, much less a brother-in-law she had been rather mean to over the years.
My husband certainly was my hero. He had used up most of his vacation time already. He did everything for my sister that I did – stuff most men and plenty of women, do not want to do for another human being.
Somehow we made it through that night. We three stayed in the living room, Pris in her recliner and one of us sitting by her side, rubbing her back, giving her foot rubs, using essential oils, color therapy, and massage to ease her restlessness.
One of us tried to sleep on the couch - usually in one- to two-hour shifts. None of that sleep was very restful.
At this time, we had no idea that Pris was in this terminal restlessness stage. We didn't know what this was except it was clearly a part of the dying process. Our dad had not going through anything near to this and we never considered calling hospice – not after the meeting with them on Friday. They hadn't done much to help all along, why would they now? Plus, they were closed on the weekends, though they did have staff on duty for emergencies.
Early Sunday morning we managed to get Pris into her hospital bed. I suspect she had fought the bed for so many days believing that she'd never get out of it again. Ironically, she refused the bed just the same way our dad did 11 years earlier.
Thirty-six hours into the restlessness, a nurse comes to our aid
By mid-morning on Sunday, I was sitting by my sister's bedside watching her writhe on the bed. Left to right, right to left, sitting up, lying down – she never once, ever, stopped moving for over 48 hours. I don't know where she found the energy or strength. It was exhausting just watching her.
She refused to let herself be covered by a blanket or sheet, despite the fact it was wintertime and that room was cold. Her feet and legs were like ice, but still not mottled or turning blue – though her fingertips were blue. I knew by now that it was a sign of lack of oxygen to the extremities. She had, after all, been refusing oxygen, food and meds for nearly three days by now.
The strength she exhibited was superhuman. She would grasp the bed railings to turn herself to the right and to the left, holding on for dear life whenever we tried to change her adult diaper. By now, despite not being able to urinate for about 24 hours now, she was defecating nonstop.
With no sleep for either my husband and I and growing more concerned about this nonstop movement and moaning, I finally called the weekend hospice service and requested a nurse.
Late Sunday morning a nurse arrived whom I had not met before. I liked her immediately. She examined my sister and informed my husband and myself what was going on. Pris had terminal restlessness.
According to Hospice Patients Alliance, terminal restlessness is defined as:
"Patients may be too weak to walk or stand, but they insist on getting up from the bed to the chair, or from the chair back to the bed. Whatever position they are in, they complain they are not comfortable and demand to change positions, even if pain is well managed. They may yell out using uncharacteristic language, sometimes angrily accusing others around them. They appear extremely agitated and may not be objective about their own condition. They may be hallucinating, having psychotic episodes and be totally "out of control." At these times, the patients safety is seriously threatened."
Pris sure fell into this categoric definition. She was calling out to our parents during times of what we though was sleep. At one point, she cried out to our father to return for her. Asking him why he was leaving her there.
The nurse checked on the amount of morphine we were giving my sister and told us to now give it every two hours. Up to this point, nothing was working – not the morphine or the other sedating-type drug the R.N. had given us, but we knew nothing else to do, but what we were told to do.
The nurse said she'd report to our regular R.N. the next morning and request that Julie should pay her first visit of the day to Pris.
In the afternoon, we decided to get Pris onto her porta-potty, give her a bath and change her sheets. My husband helped me with this most difficult task, as by then Pris could no longer sit normally on the potty chair but would slump over forward, her head hanging down.
She was still eliminating nonstop, but we managed to wash her hair and everything else and get her bed made up fresh for her.
Once back in bed, we began playing her favorite music CDs for her. A huge fan of Enya, we played every Enya CD we both owned over and over – soothing for all of us. We read scripture to her until she suddenly asked us to stop – rather comically yelling, "Please stop!"
By nightfall, we were still exhausted – now having gone nearly 48 hours without much sleep. One of us would run to a fast food restaurant so neither of us was alone in caring for Pris for too long. We had put her hospital bed in the office space because it was the largest room in the house, so we would sit together at my father's old desk and eat.
It was difficult and we truly didn't have much of an appetite.
Around 6 p.m., we were nauseous with exhaustion and decided to see if the overnight caregiver would come in. Bless her heart, she cancelled plans and arrived shortly after 8 p.m.
Not long before the caregiver arrived, we thought perhaps Pris might be more comfortable in her recliner. She agreed, so we got her into her wheelchair and helped her into her recliner, pushing the foot of it up into a reclining position. My husband settled into the chair we'd placed beside Prissy's and I sat on the couch.
Within five minutes she asked to go potty. We helped her and returned her to her chair. Within a few minutes of sitting, she suddenly sat up, rotated her body to the right, swung both legs over the side of the chair and leapt right off the side onto her feet.
My husband is quick on the draw and he managed to catch Pris before she fell over and hurt herself. That was it, she had to go back to the hospital bed where we could keep her safer. To this day I still don't know how she managed that feat of superhuman strength.
With my sister close to death, the hospice nurse still fails in her duty
Monday morning came with a burst of sunshine and unusual warmth for mid-February. The overnight gal had done a wonderful job with Pris – changing her diaper with ease, working the sheets to her advantage and making my sister more comfortable simply due to her years of experience in working with bedridden patients.
Pris had made it clear she didn't like having her diaper changed and, without gaining consciousness, had constantly rolled to one side or the other, holding onto the bed railing with a death grip and at one point, scratching the caregiver as she changed her diaper.
Pris was constantly grabbing at her lower belly, moaning and still writhing on the bed – now well past 48 hours since this started. Little did we know that this was all due to the fact she had not really urinated in nearly three days.
Julie, the R.N., arrived and took Prissy's vitals. She announced that Pris had a week or more to live and reminded me to give my sister the morphine every two hours regularly.
She said all this as matter of fact as if she was ordering a burger and fries. I realize that hospice workers do this kind of job every day. They see hundreds of dying people over a career, but to each of the dying and their loved ones – it's their first and only time in dealing with this. It's their loved one who is suffering and dying. To them – it's personal.
I informed Julie that Pris had been defecating for two days without stopping, but that she had not urinated in nearly three days. She nodded and said nothing, leaving for the day a few minutes later.
Julie never told me to pick up the "hospice bible" of information and read anything, she never said Pris was in this stage or that stage, she never told us what to do for her. She never said a thing to instruct us.
Even if we had irritated Julie the previous Friday by complaining about her L.P.N., or other things we were unhappy about, my sister had done nothing to her. My sister was a good patient for the hospice people. She was polite and friendly when awake and deserved the best care possible, no matter what my husband or I had said. And, I might add – we were never impolite. We were simply firm and demanded my sister receive the care she deserved.
Both my husband and I knew that Pris didn't even have a week left. Things had become very cold between us and Julie since she had attempted to take my sister away from us the previous Friday. The only accomplishment we had by now was to inform her that Tanya, the L.P.N., was not welcome in our home again and Julie was to find another nurse.
We somehow made it through Monday. We continued to sit by Prissy's side, rubbing her feet, using essential oils and color therapy and playing her favorite music. We got out the Bible and continued to read and pray over her.
The chaplain came and prayed with us and over Pris, and my close prayer friend, Marie, also swung by the house to pray.
It was all we could do.
The death rattle comes calling
At 7:55 p.m. that Monday night, my sister had finally fallen asleep and been that way for hours. The house was quiet except for the sound of her labored breathing and my husband watching TV in the living room.
I was sitting at my father's desk paying bills when suddenly my sister inhaled with a deep gasp and exhaled in what has to be the most unearthly, raspy, guttural sound I've ever heard in my life. She exhaled for what seemed like several minutes, though it probably only lasted 30 seconds or so.
I flew out of my chair and to her side and my husband ran from the room, having heard the breath over the sound of the TV.
It was what is known as the death rattle. One can never understand what a death rattle sounds like until they've heard one.
My husband and I stood and stared at Pris, each of us holding her hands. Her chest wasn't moving, her breath was still and my husband said she was gone and we should call hospice. Lord knows we thought that death rattle was the end.
However, I could see the light pulse in my sister's carotid artery and I knew she was still with us.
I refused to call hospice and simply waited for the overnight gal to arrive.
Another long night was ahead.
Once the overnight gal got to the house and we explained the death rattle, she checked Prissy's vitals. By then, Pris had started breathing again and become restless, though she was sleeping intermittently.
Prissy's eyes suddenly flew open and focused on me. She reached her arms out to me for a hug. This was coming from the woman who hated to hug.
We lowered the railings and spent the next few hours passing hugs back and forth.
At one point, my sister locked eyes on me and said, "you are so beautiful." It was a most tender moment and the kind where you know you've done all the right things, comforted your loved one, given them the best you can give to help them on this journey.
We tried to sleep in shifts that night, but simply could not. We knew Pris was on her way.
Hospice ... why did you fail us? Why did you fail my sister?
Why hadn't hospice told us about terminal restlessness? Why hadn't the nurse checked my sister's bladder Monday morning when I told her she hadn't voided in days? Why didn't the nurse tell me what to expect so I could call them if Prissy's feet began to turn blue, the mottling began or her breathing became labored? Why didn't she inform me that the morphine would be absorbed through the cheek so I could still administer it when my sister was sleeping? They failed in so many ways that would become apparent on the last day my sister was alive.
No comments:
Post a Comment