The last 12 hours of my sister's life begin, hospice steps up at last – Part 11

Tuesday, Feb. 19 dawned early for us all. I'm sure we were the only house on the street with all the lights on at 4 a.m. It had been that way for weeks.

It's as if those driving by can tell it's a family sitting vigil with a dying loved one. You can't miss the hospice company's vehicles in the driveway, the constant coming and going of nurses, ministers and visitors. There's equipment going in and out of the house and no one has seen my sister leave her home hunkered down in her little Hyundai like she used to do.

Life has stood still for us, but still goes on for the rest of the world.

It's a stark reminder that life really does go on.

All is quiet for Priscilla's last morning

After a relatively quiet night, despite the death rattle, hugs and difficulty in breathing the evening before, I gave my sister some morphine at 4 a.m., and sent the overnight caregiver home.

I curled up in a chair facing my sister's bed and tried to snooze. The old adage of being a new mother and sleeping when your child sleeps is one I follow here. It's the only way I can maintain some rest.

My sister is quiet at last. She's not moving around her bed thrashing restlessly anymore and her breath is labored, but she's otherwise quiet.

She still won't allow anything to touch her legs or feet, so they aren't covered and are freezing cold, but she doesn't seem to mind.

Her fingers and toes are blue and her legs are becoming mottled. I know that this is part of the end process.

Around 8 a.m., my husband goes out and gets us some breakfast. We eat quietly at the desk in my sister's room, watching her chest rise and fall. I now only leave her long enough for bathroom breaks. I know we're down to the last hours. No one has to tell me that.

We decide to go out for a fast food lunch when the CNA arrives late that morning. It's her usual day. We both need an hour out of the house, just to breathe fresh air.

The CNA arrives around 11:30. I inform her that Pris can no longer leave the bed so she'll have to bathe her in bed. I fill her in on everything that had occurred since Friday – the terminal restlessness, the constant bowel movements, the lack of urination and Julie's behavior/lack of caring.

The last four hours of care begins

The CNA, takes one look at my sister, concentrating on her feet, toes and legs and asks me how long Pris has had the mottling and blueness.

"Since yesterday," I reply.

"Have you called Julie," she asks, somewhat incredulously.

"No," I said firmly, "why would I? That woman has does nothing but botch up my sister's care."

The CNA began to explain to me that the mottling was up above Priscilla's knees and means she's in the last stage of life and has - most likely - hours to live. She says she is going to call Julie right away.

It's OK, I understand it's her job and she has to report the condition of her patient. I also tell her that Julie was here just the previous morning and knew of all of the mottling and the failure to urinate for the last three days and did nothing but announce my sister still had a week or more to go.

Remember that just three days prior to this, the hospice group had tried to get me to abandon my sister to their care.

Within minutes Julie arrives, bursting into the house and sick room like a woman on a mission. She is brusque with me and I don't care. She's been completely negligent up to this point.

She begins to change Priscilla's diaper and my sister reacts violently to her abdomen being touched. I remind Julie that Priscilla has now not urinated since Saturday morning, four days earlier. She assured me this was normal, but feels around Prissy's bladder.

As she is examining her, another nurse arrives – this being the normal procedure when the patient is in his/her last 24 hours. This nurse was to assist her and help set up 24-hour care, their norm for when the patient is dying. No one had bothered to remind me of this, especially the previous day when Julie had come.

I step back as the two nurses begin to insert a catheter into my sister. My husband is in the doorway watching the women's faces intently.

The new nurse's eyes widen as my sister completely fills the largest catheter bag they have - to the top. She whispers something to Julie and we realize that Julie is now being recognized by a peer for having been negligent in Priscilla's care.

My sister's agony for the last four days, the terrible length of the terminal restlessness had all been due to failing kidneys and an overloaded bladder.

Julie turns to me and announces abruptly, "your sister has 24 hours left. We need to get some things ready for her and arrange care, if you have something to do, go do it."

I was furious, but also exhausted and more than happy to exit the room whilst they prepared things for my sister. I was also informed that the overnight caregiver was to be called and told not to return – hospice would be there instead.

Before I left, Julie checked the medicine log I'd been keeping since the beginning and noted that I had last given morphine at 4 a.m. It was now around Noon.

"Why haven't you given YOUR sister any pain medication?" she asked tightly.

"She's been asleep since 4," I replied, "I didn't want to wake her because she hadn't slept since Saturday."

"It absorbs through the cheek," Julie retorted hotly. "She doesn't have to be awake."

I stared the woman down coldly and told her, "Nice of you to tell me now, four weeks into her hospice care and hours before she will die."

There was dead silence in the room. I know the extra nurse was taking this all in.

The next few hours went by like a blur. Nurses came and went in order to introduce themselves and let us know what shift they were taking – four hour shifts for the expected 24 hours would require at least six nurses to sit with Pris.

The overnight caregiver came and said goodbye to Pris. The nurses were all hovering over my sister so I went next door to call our brother.

The end is here

Around 3 p.m., my husband burst through the door and shouted, "Come now Liz, Pris is passing."

I ended my call with my brother and ran next door.  Julie was positioned on one side of the bed and was stroking my sister's hair. She had applied lavender oil all over her body. She was speaking to Pris soothingly - at last the woman was doing her job.

Another nurse was standing in the background watching it all unfold.

I turned on the CD player so my sister could hear the soothing melodies of her favorite artist, Enya.

I grabbed the Bible opening it to the 23rd Psalm and began to read. I couldn't do it. I started sobbing and had to request the other nurse read the psalm.

I took my sister's hand, and began applying my own oils and herbs that she had enjoyed using throughout the last four weeks. My husband stood next to me, his hand on Pris as well.

Her breathing was more panting now. I began reminding Pris of our favorite years and summers with our parents – our time in Virginia on the Potomac River. I spoke of iced cold orange Nehi's, Mom's fried chicken and sliced tomatoes, fishing together in the mornings, swimming off the dock in the afternoons, our close-encounter with a bald eagle, collecting shark's teeth and grabbing Carl's ice cream in the evenings.

The haunting voice of Enya began singing "Long, long Journey."

As my sister drew her last breath, after twenty years of suffering, of moving on through incredible odds, of bearing the pain, the truth, alone as we all must do, Enya's words were as appropriate as the scripture we'd read:

City lights shine on the harbour,
night has fallen down,through the darknessand the shadowI will still go on.


Long, long journeythrough the darkness,long, long way to go;but what are milesacross the oceanto the heart that's coming home?
     ~ Enya


My beloved sister was gone. 

I looked up from her face, now relaxed from its pain and said, "She's just seen the face of Jesus."

It's as difficult to write this now as it was to endure it then. I still can't listen to Enya's song without sobbing.  I miss my sister's crazy sense of humor, her practical way of living, her sometimes judgmental attitude, seeing her every morning out my back window – pulling weeds.

I still have all the memories. 

I have to say that the hospice gal stepped up that last day. After my sister passed, she and the other nurse cleansed Pris just like women did thousands of years ago, with herbs and soap. They dressed her and let us back into the room to say our goodbyes.

We wouldn't have to let her leave her home until we were ready. 

The hospice chaplain had come and prayed with us, staying until he was sure we were alright.

As I did with our father, I wouldn't leave Prissy's side until the funeral home director came to get her. While the day a person dies surely isn't their best day on earth, afterward, my sister looked so peaceful. For many years she'd suffered from rocacea and her cheeks had always been bright red. Now the red was gone and her frown lines were relaxed. She truly was at peace.

She's gone, what's next?

My husband and I, despite being exhausted, couldn't sleep the night my sister passed away. It had been six weeks of an emotional, exhausting journey. We were over-tired.

My sister had her affairs in order, so I retrieved her funeral instructions. She had everything planned right down to the hymns and specific church service she preferred. Our church family got to work on putting it all together and we met with the funeral director to finalize everything.

Unfortunately, we were expecting a large snowstorm the next day, so our brother's flight was rescheduled, thus requiring us to move the funeral to six days later.

The hospice crew had said they would all be at the funeral, assuring us that is what they do – see their patient through to the end.

It was a sticky few days. We had a huge snowstorm two days after Priscilla died and another one predicted for the night of her wake.

We called the retired priest who was to do the service since he had a two hour drive and relieved him of his duty. My brother graciously stepped in to carry out what must be most difficult. He'd done it for Dad and was now doing it for his sister – preach her funeral service.

Sunday night was the wake. Priscilla's coffin lay in the nave of the church, covered by a funeral pall. I had pulled together a few photo albums and flowers had arrived.

Several family members came, though the drive is far and we had a storm coming, it was nevertheless, a small crowd.

Luckily, the storm held off that night. Monday dawned bright and cold, the predicted clouds moving in by late morning.

Soon enough the service was over and once again I had the difficult task of seeing my husband lift the handles on my sister's coffin to carry it out of the church. This time my son was there helping too. It just about brought me to my knees. Both had loved Pris and both had helped look after her for the last 13 years.

Blessedly, the snow storm held off until her coffin had been lowered into the ground and everyone headed home.

As the flakes began to fall, we - the family - went back to her house for warm food and memories. By 8 a.m. the next morning, we were in a full-fledged blizzard.

None of the hospice people, except for the chaplain, showed up for my sister's funeral after telling me over and over they would come. No one sent condolences, no one said why they didn't show.

My sister was right when she had said a few weeks earlier, "It's as if they don't care because you are dying. And that's even though you're in their care because you are dying."

How to choose the right hospice group

Sometimes the problem with choosing a hospice group is exactly what we dealt with. My sister refused to consider hospice in the beginning and despite my experience in research and as a newspaper reporter, I was overwhelmed with caring for her while she was in the hospital and completing a major project my boss pressured me into finishing. I didn't do the research the way I should have.

The day my sister decided to leave the hospital, she also refused hospice care. Her doctor ordered it anyway and convinced her to accept it. It all went as if in a whirlwind. We trusted him and he referred us to the local hospice group in our small town on whose board he sat – adding that we didn't have to hire them.

Nevertheless, it was easy, with the referral by her physician – hiring these people seemed like a no-brainer. I am still, to this day, sick from my own decision to hire them. I knew better than to not research something like this.

When family members are faced with a dying loved one, they are exhausted, overwhelmed by the enormity of making decisions, additional responsibilities they now have, and wanting to do the right thing – not to mention the mind-numbing truth that their loved one is going to die.

No matter how prepared you think you are ... you aren't.

The American Cancer Society has a page that offers information on how to choose a hospice group. Some of these points encourage the family to: 

• learn the care plan for your loved one, which hospice will undertake
• check the hospice company's references
• check the hospice company's personnel, their references and background
• is the group accredited? Are they Joint Commission recommended?
• what financial responsibility do they require from the family?
• what is their licensure, i.e., what does your state require?
• is the hospice group certified by Medicare?

Visit the site for more information: http://www.cancer.org/treatment/findingandpayingfortreatment/choosingyourtreatmentteam/hospicecare/hospice-care-questions

Have you had a bad experience? I want to hear about it

If you've already had a bad hospice experience and it's over, there's not much you can do about it now, except make sure you complain to the right people and don't beat yourself up about it.

Lord knows, I've tortured myself, cried many tears and suffered in the last nine months since my sister died. I've wondered what I could have done differently, how could I have alleviated her suffering sooner?

I can't change what is past. I can only help others to move forward armed with the right way to care for their loved one.

In the end, I kept myself busy, took a vacation and quit my job. I got out of a stressful situation in order to begin to heal.

About four months after my sister died, I ran into our overnight caregiver and her regular patient of seven years had just died. Even though this gal knew about our hospice group's negligence, she had no say in the care her patient would receive. The family person responsible had chosen the same hospice group as we had and ended up with the same two nurses, Julie and Tanya.

Whatever occurred in the last weeks, it was so bad that Julie was fired. As far as I know, Tanya is still there, ditzy as ever and dispensing bad medical care to dying people.

After learning this information, I decided to write a long letter to my sister's physician. I didn't expect a reply and I didn't get one. His wife is my nurse practitioner and I like her. She encouraged me to let her husband know what happened. "After all," she added, "Priscilla was his patient for a long time."

I told him everything that occurred and placed some blame on him for keeping Pris in the hospital longer than he should have. I blamed him for being unavailable to family members to talk with and for not disclosing that my sister was in end stage until we demanded it of him.

Keep a journal, a record of your loved one's final journey

I also kept a journal from the very first day my sister went into the hospital. We have no desire to take legal action against the doctor or hospice group, but we will never recommend them. The journal has served as a place I can go for a reminder of the good as well as the bad, during those last six weeks.

I've written this very long blog to get this out of my system. It's had 11 parts, each one longer than the one before it. Blogs are supposed to be no more than 500 words, so I gratefully thank everyone who has taken the time to read this most personal account.

I pray every single day that no one else has to go through what we did. When the time comes for someone to care for me, I pray that it is done properly, humanely, and with dignity and humor.

I know my sister is at peace now, she has, after all – gone home.

The last four days of life are a test of strength and faith – Part 10

After the hospice folks and chaplain left Friday afternoon, my sister continued to sleep. She was in her recliner and remained there the rest of the afternoon, evening and overnight.

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.

As my sister approaches the end, hospice turns real nasty - Part 9

Priscilla's last catheter (or so we thought) was removed by the little tyrant Nurse Tanya 10 days before she died after a number of problems with assorted catheters.

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.

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 loved and adored them both for their dedication to our mother, but of course, they are the best gals in the world anyway. Emily and I had always been close, so it was wonderful to have them visit.

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.

Death and dying: Hospice can be wonderful ... or not – Part 8

From the moment my sister came home from the hospital that Tuesday evening in January of this year until she passed away at 4:07 p.m., Feb. 19, hospice did not come through for us. They appeared to be over-scheduled, over-worked and under-staffed. Sometimes they were short with me – the caregiver – sometimes they were not.

I admit, I am somewhat OCD and have worked in management all my life. While I was always friendly and polite to these people, I still had someone I loved for whom I was responsible. I would have stood in front of a speeding freight train if it meant helping my sister. A couple of mean nurses would not intimidate me.

They were, however, always kind to my sister. Sometimes, however, it's not the words that need to be kind as much as the "care" that must be spot-on.

What a caregiver needs to know

The primary caregiver for a dying patient is the one person to whom hospice looks to for guidance and who the patient relies upon.  Decision-making is now your responsibility. You now have the life of the patient in your hands. Everything you say and do, every decision you make has a bearing on whether your loved one suffers or not, dies quickly or lingers painfully, is comfortable or not, is well-thought out and researched ... or not; and comes from a place of love – always.

Most of us are woefully unprepared to be a caregiver. Most of us have families of our own, jobs, ourselves and our own health issues, job issues, and money issues we also have to cope with while we are trying to take care of a dying loved on.

The dying deserve the very best that the living can give them.

We are born into this world, loved, held, coddled, fed and lovingly cared for for years. We grow old, go off on our own, perhaps marry and have children and then grow old, requiring the same care we received as infants – to be held, coddled, fed, cared for ... until we pass on.

Why is that so hard? Why do so many shy away from those dying? It's not a fun process for sure, but every single one of us on this earth will die someday. It's inevitable. But that path, that journey doesn't have to be so difficult. While we often can't change the pain or suffering our loved one is going through, we can do whatever it takes to make them feel loved, protected and surrounded by a healing touch as much as possible.

We do, however, rely upon hospice to guide us in most processes of the dying path as we learn to care for our loved one – who trusts us implicitly to responsibly care for them.

Unfortunately, the hospice group we chose, which was local and located down the street from our house, failed us miserably.

Tricks of the trade

My sister had become too weak to get out of a chair, off the bed or even raise up from the toilet, very quickly. While in the hospital, the staff used a thick belt to place around her, tightened somewhat and providing an object to hold onto safely whilst lifting her.

If not done properly, you can hurt your patient. We had to request one of these belts from hospice as it was what the hospital therapist recommended.

Then, once we had the belt, that's all they would use to lift her – in the end – as my sister grew so weak, she was just dead weight, the belt caused undue strain on her body and thus hurt here whenever it was used. Yet hospice insisted on using it. By then, she was so thin, I would wrap my arms around her, lace my fingers together and on the count of three, with her arms around my neck, lift her to a standing position. This, my husband figured out without any help from the incapable hands of hospice.

Once we got her to a standing position – we would rest for a moment ... this is a GREAT time for a hug. That act provided many intimate moments for hugs that helped soothe my sister's spirit.

We would stand for a minute or so, simply hugging my sister and letting her get her balance, before shuffling toward the wheelchair or porta-potty. Meanwhile, prior to lifting her, we had to prepare everything ahead. The wheelchair was locked into a position easy for her to shuffle to and back up against so she could sit down. The porta-potty was positioned similarly so she could maneuver without pain.

All this we figured out ourselves with no help from hospice. Yes, it can be figured out. But why didn't that hospice staff teach the family how to do this so the patient never suffers through one mishap, one painful "lift?"

After the first day home when the purchased bed rails had not kept her from falling out of bed, we requested a hospital bed from hospice. It was scheduled to be delivered and set up the next day.

We cleared space for it and the deliveryman brought it in and set it up.

"Where are the rails?" I asked immediately upon seeing it. "It has short rails up at the head of the bed. How is that to keep her from sliding right off the side?"

The answer I got was that they would provide us with a bed alarm that would sound whenever my sister's behind left the bed and sure enough, it was EAR PIERCING!

The rails were situated near the top of the bed and at least a dozen times a day for weeks on end, my sister would scoot around that bed setting the alarm off every time she sat up or tried to get up from the bed.

She seemed to forget she was sick and would often just try to get up and go about her day.

My question still is: why did hospice deliver a bed with almost no bed rails to a patient who was an escape artist? The reason the bed was requested was because she kept falling out of bed.

Many times I got my sister to lay down for a nap and I would try to sleep too, only to have the alarm sound and by the time I reached her room, she'd be sitting on the side of the bed, head hanging low or she would actually be up, both arms out to the side trying to maintain her balance as she navigated the floor, attempting to walk somewhere.

When I asked hospice why the rails were toward the top of the bed, the nurse didn't know and didn't offer a solution except for the alarm.

An alarm doesn't help if the patient is already on the floor and injured.

We were never shown much of anything, unless we specifically asked.  Days before Pris passed away and now completely confined to her bed, it was our overnight caregiver who showed us how to adjust the sheets on the bed and use them to shift Pris around in the bed, without her being able to heft herself to assist. She also helped us with a number of other useful tips for that stage in the dying process.

Bathing

The CNA hospice provided us with was wonderful. We really liked her. She had been doing this for a long time and was gentle with my sister and took good care of her.

She taught us how to bathe Pris once she couldn't get into the shower anymore – on the porta-potty. This enabled us to wash Priscilla's hair thoroughly and she could have an accident if she had to and not feel bad about it.

This gal brought us a small tube of Medline body lotion early on that smelled really great and, while not a natural product, it had ingredients that helped my sister's skin feel better. This woman always saw to it that Pris had a warm, soothing bath, the nice lotion, and dried her hair. She would use soft towels to dry her and dress her in clean clothes. She always treated my sister like the most important person in the world.

Pris had had rosacea for years on her cheeks and it always looked bright red and rather raw. Her arms had taken a beating (not literally) while in the hospital and the skin was dry, as were her legs. This lotion worked some magic on her and helped her feel much better after a bath. We ordered a huge bottle through Amazon and still use it for ourselves.

This gal was wonderful to work with. She would organize her visits to Pris so I could coordinate running errands or simply going home next door to spend time with my cats, unwind and watch a taped TV show or two.

It is so very important to get time to yourself when you are the primary caregiver. And those moments are few and far between.

The mask

The saga of the facial oxygen mask was a nightmare from the beginning. It would be what began unraveling care Pris received from the two nurses.

As I mentioned in an earlier blog, Pris was yanking the oxygen mask out of her nose constantly, and mostly without realizing it. She was getting less and less oxygen to her brain and through her body on her own by the day, so for a comfort level, she needed to get better oxygen.

At least that's what we were told. I knew that my father, who died from kidney failure, had panic attacks when he couldn't get enough oxygen into his lungs and he used the oxygen constantly – though he never yanked it out like she did.

A face mask was recommended, much like what you see in TV hospital dramas. One week later we still didn't have it. By Thursday of that week, we were told by Tanya, the young L.P.N., that the shipment had come in and she would bring the mask to Pris later that day.

By 4:45 that afternoon, with their office closing at 5, we still didn't have the mask in our hands. I was fretting and up until this point, my sister had not made any comments about hospice, preferring to let me handle it, but this time she said it all in one impactful statement.

"It's as if they don't care about you because you're dying and it doesn't matter anyway," she said.

Sad, but true.

It was my job to do what had to be done, even if it meant calling hospice another time that day. The receptionist said Tanya was in the basement going through the shipment of supplies and that she'd be by the house on her way home.

Shortly after 5 p.m., Tanya finally showed up and came in the house with the mask in her hand. I looked at it incredulously – it had a little bag hanging off the end of it. I had never seen anything like it.

Tanya tossed the mask in my hand, turned and started back out the door. It was, after all, after 5 o'clock and she was young, had her whole life ahead of her and somewhere to go.

I said, "Hey! Where are you going? What do we do with this?"

She turned around, gave an annoyed sigh and showed me how to attach the mask and she put it on Pris and left.

I shook my head and looked back at Pris who was gasping for air. The darn mask would not function properly.  I took it off, put the old oxygen tubing back in her nose and pulled out my laptop. I went to Google and, using the name I found on the oxygen mask, did a search for it.

It was specifically for a certain pressured tank to be used in hospitals. I checked Priscilla's tank and she had nowhere near the pressure she needed for the bag. The instructions I found on the Internet were much more complicated than attaching the tubing to the tank's tubing and sliding the mask of her face.

What?

Beginning when Pris went into the hospital, I had kept a daily log of her journey, so I got out my journal and began to write.

Many may ask here why we didn't fire that hospice and get someone new. That question, in and of itself, is a loaded one.

When you are an exhausted caregiver and don't know what to expect or who to ask because everyone who seems to know the answer is the enemy, what do you do? Priscilla's doctor was on the board of directors with this hospice and the nurses all backed each other up.

My husband worked nights and the care for my sister took every waking minute. I didn't have time to start calling around to other hospice facilities to find someone knew. It also grossly upset my sister to have this discussed in her presence and I could not leave her side long enough to make a phone call.

I had placed a call to the social worker with hospice, who had promised at the beginning that I was to call for anything at anytime and she'd return my call or come over immediately.  It had been six days and I still had not received a call back. I knew she'd gotten my message because the chaplain had run into me the day of the phone call and asked if she had replied to me yet.

My husband and I felt we were being vigilant enough with my sister and had the help of the overnight caregiver, so despite the failings of hospice, we were so close to the end with Pris that we felt we could stay on top of things. We thought it would be worse to try to change to an entire new crew of people at this stage of the game.

We made the wrong decision.

What you can do to make your loved one feel better

One of my passions is aromatherapy and color therapy. As an advanced certified Aura-Soma© consultant, I am well-trained in this special form of color therapy. I had also been dabbling in aromatherapy for years.

From the first day home from the hospital, I had brought all of my essential oils, blends and lotions to my sister's. I also researched and brought a specific Aura-Soma© bottle with which to treat Pris – a bottle that, full of essential oils, plants colors and oils, pure water, light, gems and minerals – an all natural product, would help to calm her and ease her emotional and spiritual experience.

I have what is called a Beamer Light Pen that is larger than a writing pen and holds a small vial of the Aura-Soma© bottles, with a crystal on the end. Light shines through the colors in the vial and the crystal and you wave the pen over all areas of the body – concentrating on the energy fields (chakras).

Early on I had Pris choose the vial she wanted and we used that right to the end. She especially enjoyed this ritual at the end of the day. She would get into her recliner, recline and relax as I used the pen all over her body.

I would use the bottle's liquid to rub her feet and work the reflexology points and finish up the session by spraying one of the many sprays – called air conditioners. These are the colors, quite fragrant, in a pump spray in which you can simply spray in the person's personal space. Some of them are named after archangels and Pris seemed to find it most comforting when I used the Archangel Michael spray.

I also used light essential oil blends for specific things, such as Priscilla's legs and arms. She had come home from the hospital full of bruises from needles and other bangs on her body. She was mostly skin and bones and bruised easily. I used a blend that included lavender, arnica and helichrysum, among other oils, to heal those bruises for her.

We continued all these rituals right until the point of her death.

Reading scripture and spending time in prayer also helped comfort her and brought me relief, as well as strength.

When she could still get out of the house with a walker, we went on a couple of drives. One day we went looking for eagles across the river, and were rewarded with several sightings.

I played her favorite Enya CDs and for several afternoons during the middle two weeks of her time at home, we watched the old PBS series from the 1970s, "The Last of the Mohicans." We had watched this together with our parents back when the series first came out. We saw one episode each day up to and including the seventh out of eight episodes. By that time, Pris could no longer comprehend what she was watching. I was not able to watch that last episode until two weeks after Pris passed.

Still, she enjoyed the earlier episodes and it helped us reflect on some memories near and dear to us from those days when we were both much younger and our parents were with us.

I cooked whatever Pris wanted within diabetic reason.

Nevertheless, she enjoyed her meals and found her sugar levels weren't so bad because she was getting balanced meals.

One week left to go

About 10 days prior to her death, Pris pulled hard on her catheter. We'd had so many problems with it causing her discomfort that it had resulted in a number of calls to hospice for a nurse to come over and reposition it.

We'd gone from a small bag to a large bag and back again, and learned how to maneuver the bag whilst getting Pris up from her bed or chair, rolled over in bed, bathed, etc. But by this point, she'd had a catheter inside of her for 30 days. It had to be uncomfortable.

On this Friday, I called hospice and told them the catheter was paining her again and her constant complaint was that she couldn't urinate.

Tanya, the L.P.N., called us back and was quite rude, "Listen Liz," she said. "I've had enough of this. I'm going to remove the catheter! I'll be there shortly."

I informed her that Pris had already decided to remove the catheter anyway, but Tanya just snorted and hung up.

She arrived and nearly yanked the thing out of my sister and left abruptly.

Little did we know, because we WERE so badly informed, that the lack of a catheter would be the cause of so much pain and discomfort within the next seven days.

In fact, the following Monday, with the constant complaint of having to urinate frequently with little voiding from her, the R.N. ordered an antibiotic for Pris to treat a urinary tract infection without taking a urine sample.

Since hospice never focused on the symptoms of congestive heart failure for a dying patient – looking instead for only listening to her lungs, and checking her edema – they completely failed to look for the symptoms of a woman also in kidney failure.

The inability to urinate is one of those symptoms.

Pris would spent her final 10 days having to urinate every few minutes and very little being voided.

After years of anticipating this last journey, the pain and suffering of all the years, the last hospitalization, the trials and tribulations of the last 2 1/2 weeks of being home in hospice care was nothing in comparison to what the next 10 days would entail.

Death and dying: For some, the hospice experience is a blessing, for others ... a nightmare – Part 7

When 2013 began, we thought it would be a fairly normal year. My sister Pris was failing, but she'd been holding on with the congestive heart failure (CHF) for eight years already. There was no reason to think this year would be any different, except that she might have to give up a few regular activities as she was slowing down.

Still, her hospitalization on Jan. 9 proved that what we all knew was coming eventually – at arrived.

As devastating as the news that your loved one is in the end stage of whatever disease he/she has is to the family, it is impossible to put yourself in the place of the person who IS dying. You can't imagine it and I've spent the last nine months reliving those six weeks from my sister's perspective and still can't get a handle on it.

Funny how you think ahead of time that you'll be completely in-tune with your loved one, but frankly, you are so exhausted during those weeks/months, that you are often just getting through each day.

Hospice Week One

With Pris coming home from the hospital on a Tuesday, the first week at home consisted of Tuesday night through Sunday. It was an easier week of course, because our brother and his wife were visiting until Saturday and my husband had taken a week off to help.

Pris didn't sleep well beginning the first night. We had already bought and installed a bed rail on her queen-sized bed – where she insisted on sleeping, but it failed her the first night.

We quickly learned that my sister was slippery as an eel. She bypassed the bed rail and slid down the bed until she could get out of it at the bottom. I found her sitting on the edge, rather chagrinned and wanting to try sleeping in her new recliner.

As a mother, though my son is full grown, I found myself once again sleeping with one eye open and all ears alert for the next four weeks. And I became totally exhausted immediately.

If there was one major accident that simply could not happen, it was for my sister to fall and break a hip or leg. Being in hospice care, we were warned, if she broke a hip, it would not be fixed because she was dying. She would have to live with a broken leg or hip until she died.

It became a tug of war between my sister who was becoming less lucid every day and her wanting to escape her chair, recliner and bed and take off by herself and me to protect her from falling.

Priscilla's routine was to go to bed at 5 p.m. and arise around 1 or 2 p.m. That wouldn't do for my body clock so I needed to get her to change her routine. She no longer had to care for herself and had the stimulation to stay awake later. Still, it was a work in progress.

Right away, hospice and the doctor failed us. The doctor had promised sleeping meds immediately and failed to prescribe them for the first night. However, we did have them by night two ... though they made Pris hyper instead of able to sleep. We never did get any prescription that helped her sleep at night.

By the second day, thanks to the failing bed rail and previous falls in her bedroom, we had hospice bring us in a hospital bed, which was delivered on day three, along with a bed alarm, porta-potty, wheel chair and oxygen.

What Does Hospice Do For You?

Hospice provides you with a thick notebook full of interesting information. Such tidbits include: what to expect physically/mentally as your loved one progresses toward death; what to expect from yourself as this occurs; how to help them along, i.e., tell them it's OK to let go. All of this information is very helpful, except for the fact it's almost impossible to find time to read.

What I needed to know was: what to expect from someone who is dying from congestive heart failure? We had instructions to weigh Pris every morning, take her blood pressure, temperature, check her blood sugar, and make sure she drank no less than and no more than 32 oz. of water. But we had nothing else to go on. What symptoms would she have as she progressed toward death. What might happen to her kidneys? What about pain medication and how to administer it? We never learned the specifics until two hours before she died.

Since she was diagnosed with kidney failure several years ago, Pris began having problems urinating immediately upon getting home. Thus began the catheter in, catheter out game between Pris and the hospice nurses for the next four weeks.

The catheter and her kidneys would be the most painful, heart-wrenching part of this illness and the nightmare of suffering caused by the hospice nurses.

A Brother Says Goodbye to His Sister

Needless to say, however, we got through that first week. Our brother, an Episcopal priest, gave communion and prayers over us all before he returned to his home on the east coast. We went through photo albums and told family stories around the kitchen table.

There was a lot of laughter and a lot of tears. Once there was five of us and now our parents were gone. Soon our sister would be gone and we would be two.

It would be the last time my brother would see his sister. To understand their tie to each other is to know that they are just two years apart in age. I am 15 years younger than my sister and 17 years younger than my brother, thus I grew up in a different decade, different times. Those two grew up in the 50s, with parents in a different place in their lives than they were when I came along.

It was a wonderful time for reminiscing. One for the record books.

Hospice Week Two

We entered this week with a visit on Monday by the R.N., the gal who checked Pris in on the first day home from the hospital. For the sake of privacy, I will call her Julie. She seemed very nice, but relatively clueless to what Pris was dying from. This being so early in the hospice game, I completely trusted her and relied upon her for advice and instructions.

Mistake number one.

By the seventh day at home, we'd already gone through several prescriptions of sleeping medications – to no avail. Nothing worked except to make my sister more hyper than sleepy. I was, by then, going on seven days with no more than one- to two-hours of sleep – on the couch or on the spare room bed – one eye and ear always open.

On Tuesdays and Fridays the CNA came to bathe my sister and cater to her every need. This gal was fabulous. She was knowledgable and took superb physical care of my sister. On her first visit, my sister's first Friday at home, the CNA presented Pris with a small stuffed goose. The goose signified the hospice group's motto that the patient leads the way, the same way one goose leads the "v" of geese flying behind him.

The gal had good intentions, but hospice never followed my sister's lead. The two nurses in charge of her care were completely clueless.

On Wednesday, the R.N. failed to show up. After several frantic calls with no results, I was finally informed that she wasn't supposed to be there three times a week. I conferred with my sister in-law, who had sat with me and the R.N. on Priscilla's first night home and taken notes – indeed – we had been promised visits from nurses three times a week, plus the CNA's twice a week visit.

By Friday I complained to the CNA, who informed me that there were major scheduling problems at the office and she would figure it out for me. To give the R.N. credit, she called me and said she'd provide me with a month-long schedule. However, she denied ever saying someone would be there three times a week, despite my reading back to her the words she said the night Pris got home.

The light in my husband and my heads was beginning to illuminate – oh no, we thought – this hospice group is oblivious.

Backtracking to Thursday ... the L.P.N. arrived, I'll call her Tanya, and we liked her right away. She was very young, pretty and bubbly. Still, she would turn out to be one of the major problems we would have in a very short time.

Whatever happened to my ability to size people up?

To this day I am so thankful for my husband who was able to stand back from the situation just enough to monitor everything and keep my head above the rising waters. He was and is an angel.

By that Thursday morning of the second week, I'd gone so long without sleep that I simply had to hire someone as an overnight caregiver. My sister agreed and I began making phone calls. By a stroke of luck, a neighbor happened to be a caregiver and came over immediately for an interview.

We liked her, the price was right and she was willing to start right away.

It's pretty sad when your biggest excitement for the day is that you'll get to sleep an entire night through.

What About My Job?

In addition to all this, I still had to deal with my job. We needed both our incomes to pay our bills. Thankfully, we lived next door to my sister and were able to look after our house and two cats while living with her.

My boss wasn't so accommodating, however.

Without getting into too much boring detail, suffice it to say that I had a passive-aggressive, manipulative boss who was more than willing to let me work from home the first two weeks while Pris was in the hospital.

We were in the midst of producing a 64-page magazine that was my total responsibility to design, layout and get to press by mid-January. I managed to get it all done by the end of the second weekend Pris was in the hospital. The result was probably better quality than if I had worked in the office with the day-to-day distractions of people milling about.

The Friday after she returned home, I went to visit my boss to propose several jobs we'd had on hold due to time constraints. Now would be a perfect time for me to pursue them, while I could work from home and while my sister slept (which she did during the day – a lot).

The boss and I made an appointment to meet at the office and discuss these prospects. I arrived on time and he was nowhere to be found. Fifteen minutes later he arrived and called several other staff members into his office for a meeting, neither acknowledging me nor apologizing for my having to wait, despite my leaving a dying sister home in a sickbed with someone else watching her.

Once he finally met with me 30 minutes after I had arrived, he announced he was uncomfortable with me working from home. This, after requesting that I DO SO in order to get the aforementioned magazine done. I am a hard worker and loyal to a fault. I never cheat at my time and always worked way over my 40 hour salaried week. I had never given him any reason to doubt my work ethic.

He denied ever wanting to accomplish the projects I proposed and announced that he was having a difficult time dealing with me being gone since I was the person he vented to when his day became too stressful.

He rested his head between his hands and just shook his head back and forth, asking me to come back somehow. "I just can't do without you Liz," he said.

For years he had been aware my sister was dying and we would reach this point in her dying process. He was well-informed about my life and I had a job that I could do very well from home and still provide quality work.

He sent me home with a request to provide him with job bids (that he'd already received from me a year earlier) and for me to work 30 hours or more a week at a half week's pay (20 hours pay) since I normally worked 45-60 hours a week at 40 hours pay.

I was furious that I had to not only deal with caring for a dying sister, but that my boss, who previously had shown great empathy, was being so selfish and manipulative.

It took only 24 hours of convincing from my brother, sister in-law, husband and sister, for me to decide to take an unpaid leave of absence.

Apparently, that is exactly what my boss wanted as he was under pressure to lay off two employees this year in order to cut payroll back. I was not on the original list of the two, but he had enough trouble making the decision to lay off the poor workers, so my time off permitted him to conveniently hold off on making a decision until such time I had to return to work.

We Settle into a Routine

During my sister's second week at home, we settled into a relatively easy routine.  She awoke by 6 a.m., ate breakfast, and moved to the living room to watch the Today show. She would doze throughout the morning and have a snack around 10 a.m. Lunch was between 11 and 11:30 a.m., then a short nap.

We would hang out in the afternoon, watch videos, go through photo albums and talk. Dinner was easy and she was getting good balanced meals. Her sugar readings were good and by Wednesday she had dropped another 10 pounds in water weight thanks to the alkaline water system we had at home.

The third week rolled around and the routine continued fairly easily. We had the R.N. on Mondays and the L.P.N. on Thursdays, the CNA on Tuesdays and Fridays.

Early in the week we asked about a new oxygen mask because Pris was constantly yanking the nostril tubing out. We were informed that because she was a mouth breather, we needed a face mask and the R.N. placed an order for one.

Little did we know what an ordeal this would turn into.

If only hospice would take the specific disease their patient has and explain to the caregiver and family what to expect FROM THAT disease as time progresses, it would be so much easier on everyone.

The next blog – continued lack of training ... how to lift your loved one, diaper them, fix their sheets, dispense the morphine and more. And then the catheter – more nightmares.

Progression of a disease – the last hospital visit proves a distorted healthcare system – Part 6

On Wednesday, Jan. 9, 2013, I hate a dental appointment at 8 a.m., and as was my habit, I awoke early that cold morning, and headed over to check on my sister prior to heading to my appointment, which was 30 miles away. I would be going to work, also 30 miles away from home, after my appointment.

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.