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.

Progression of a disease – death and dying is not for the weak of heart – Part 5

As I've said before, the process of dying is not for the weak of heart. That is not meant to be funny. Dying is a difficult process. Just as we struggle through life, the process of dying is yet another struggle and goes through a number of uncomfortable stages.

As a part time caregiver for my father prior to his death and caregiver to my sister in the years prior to her passing, I've taken note of a number of processes that seem to be the norm for someone who is preparing to pass away.

Sometimes that process can take years.

About seven years ago, one of my sister's close friends, an elderly woman she had befriended after moving here, was in her final years of her life. This friend had no one else in her life but my sister. Her husband had died many years before and never had children. The woman was, quite simply, old and frail and confined to her bed. She had several caregivers who came in to look after her, provide meals and the like. My sister used to visit her fairly regularly as the two of them truly enjoyed their banter.

Suddenly one day, the friend called my sister and told her never to visit her again. The woman pushed Pris away like a piece of old garbage and my sister could not understand the motive behind it all. Despite requests from the caregiver to still come and visit, my sister heeded her friend's request and never saw or spoke to her again.

My sister did something almost the same. She began pushing people away, all that is, except me.

In 2011, my sister suddenly decided she didn't want to celebrate holidays anymore. No more Thanksgiving, Christmas, Easter or July 4th holidays for her. She stopped decorating at Christmas, though she did continue sending cards to friends and still gave gifts only to my family and I, along with her annual donations to local charities.

She stopped joining us for Christmas or Thanksgiving dinner, even to the point of refusing a plate of food. She wanted to be by herself, eat what she wanted and not participate in any of the activities.

It broke my heart.

I'm the person that doesn't want anyone to be alone for the holidays, to not have gifts to open, people to be around on such family-oriented holidays. I hate the thought of someone missing the great food on these holidays and all the traditions that mean so much. For years we had kept up our mother's traditions and for my sister to not want them anymore puzzled me to no end.

I still prepared a Christmas stocking for her, and never cut back on my gift-giving. Every year I continued making my mother's Scrabble mix and brought Pris a can. On Christmas morning, since she refused to visit our house, all of us would bundle up and carry bags of gifts over to her and watch her open them.

She may have eschewed Christmas, but she got a huge grin on her face when she saw those bags of gifts come through the door.

Still, the pushing away of family and friends, holidays and traditions seemed to be part of her process.

My sister, left, and I on a rare day out at the Jesse
and Frank James farmhouse in Kearney, MO. My
sister enjoyed the fact that my writing had brought
me into the James family world, so I took her out
to the farm for a tour. This photo was taken just four
months before her death.

Over the next year, she pushed more and more people and things away. It got to the point where I was the only visitor she wanted. Every morning before work, I went over to check on her and visit with her for awhile. I called or emailed her several times a day too.

My sister was fiercely independent, especially where she had never married. She learned to do for herself and was proficient as a "do-it-yourselfer." She loved to garden and was always outside in the summer before 7 a.m. to pull weeds, cut back the flowers that had bloomed and keep her yard in good shape. She washed her windows on the same date each year and had lists of household "to-dos" that she followed religiously.

She managed to live alone until early 2013, though the six months prior to that date she really should not have been alone.

She kept a lot from me.

By pushing everyone away, none of us realized she was significantly dropping weight. Despite strict dietary standards, her triglyceride readings never improved and her diabetes was still out of control. Her diet was bland and boring so she didn't eat much.

A few years ago she began seeing a ghost in the house. It was a woman dressed in 1970s clothing – pants and a vest – who never spoke to her, but just ... hung around.

Pris also had a lot of dreams. She often dreamt about the same things or variation of the same subject. Prophetically, she was coming to terms with the end of her life, issues she had – anger and fear – her soul seemed to be preparing for the end.

It became clear as I watched my sister go through these stages, listened to her dreams, prayed with her, that when someone dies through the normal process – that is – has a disease or simply dies of old age (in other words, the person does not die accidentally or quickly), then their soul prepares for death.

I will never know everything that went through her mind in those last years and days, but I do know she was struggling.

I lived right next door to her, but had a job, friends, activities, and my own family – a husband, son, daughter-in-law, grandson and two cats. I was rarely alone or lonely.

My sister, who was used to being on her own, had to have been lonely and would not admit it nor let anyone "in."

Yet, God gave us free will, which allows us to make choices in our lives.

Some of us choose to eat all the wrong foods, thus resulting in a related disease late in life.  Some of us choose to smoke cigarettes, cigars or chew tobacco, resulting in an illness or disease at some point. Some of us drink, do drugs or live in a perpetual state of stress, all of which, together or apart, causes disease and dysfunction.

The choices we make in life have consequences. Whether the consequences hit us late in life, or early in life, depends on the choices we make.

My sister had to cope with the choices she made, as well as the ones made for her. In an earlier column, I mentioned that my parents pushed her into her career field and she never forgave them. She chose to smoke cigarettes for 35 years and that same career field caused her enough stress as to contribute to her massive stroke 20 years ago. Yet, the same career field proved she was a savvy businesswoman who did an outstanding job handling her own finances.

As 2012 progressed, my sister really slowed down. With her weight at a dangerously low level, she became more unbalanced and unable to walk. Nevertheless, we both made light of it and she learned to adjust. She would walk out to her car and due to equilibrium issues, she would take three steps to the left and three to the right and then maybe walk a straight line. She was terrified of falling and so found ways to cope. Her little left/right dance was almost lyrical as she would move about the house and property.

She spent years and years planning her death and getting her affairs in order. Not only did she tackle all that beforehand, she also began going through her household and re-reading every book she owned.

She would read a book again and either give it to me, donate it or get rid of it. Her reasoning, as she told me one day, was so I wouldn't have to do it.

She managed to dust and vacuum her house almost up until she went into the hospital for the last time and did her best to keep her home and herself clean.

No matter how vigilant she was, however, she couldn't stop the congestive heart failure from finally putting its foot down and saying "enough is enough!"

In the last few months of 2012, my sister began falling out of bed at night. She attributed it to low blood sugar attacks, because her sugar would be low, but she also began injuring herself whilst falling out of bed ... and then not telling me for several days.

She also decided not to tell me about doctor's appointments, explaining that "they" never gave her the blood work anymore and she would not allow me to request them. I found a stack of reports neatly in a folder after she died – they told the whole story.

After years of holding the congestive heart failure at bay, in 2012 my sister's fluid levels began to rise and rise.

The lack of oxygen to the brain, the sugar readings out of control, the fluid collecting all over the body so as not to be acutely visible in one spot, all contributed to her health beginning to fail.

On Dec. 11,  her 71st birthday, we went out to breakfast as was our custom. It was her favorite meal to eat out. It was always just us girls. She never got anything special – keeping to her diet requirements, she would order tea, scrambled eggs and dry toast. Still, she LOVED getting out.

She had another doctor's appointment the next day and failed to tell me, once again, the results. It turned out the blood work showed her fluid levels, already out of control at thousands of points over what is normal, were now in the tens of thousands.

I am convince Pris knew she was at the end. My job was so stressful during that year that she purposely kept her own health from me so as to protect me, especially during the holiday season. She knew I had a boss who would not be supportive if I had to take time off.

Christmas came and went and a few days before Jan. 1, I told my husband, after a lengthy visit with my sister, that I knew she'd just had her last Christmas.

He claimed I said that every year and that my tenacious sister had already well outlived the doctor's predictions from her first diagnosis. But I knew I was right, it was just a matter of when.

My sister's greatest battle lay just ahead and it would prove to be the most difficult, most painful and most heart-rendering of them all.

Progression of a disease – death and dying is not for the weak of heart – Part 4

The frenzy with which my sister had cleaned our Dad's home in the hours after he passed did not abate. After his funeral, she began working on his house, which he had left her in his will, to prepare it for her to move into.

She started in mid-February and kept at it for months.

She assembled items for auction and had them hauled off.  She went through Dad's clothes and gave them to me to deal with. Much to my delight, his black clerical suits (without the collar) went to a homeless shelter in Kansas City because the homeless men had nothing to be buried in.

Dad would have been thrilled that he helped the poor in some small way.

Pris got rid of duplicate household items, painted every room, added wallpaper strips to every room (much to my dismay years later) and made his house her own. By May she had hired movers to help bring the big items from her house to his and she was finally done.

She refused all offers of help from my husband and I, and moved quite a bit of her items herself. However, after all those years of looking after our Dad, especially the last three weeks of his life, she had not really cared for her own health.

Pris still suffered greatly from her 1993 stroke. She had difficulty walking, her equilibrium not quite 100 percent. Her vision left a lot to be desired and her breathing was always labored.

She admitted she wasn't feeling well a few months after Dad passed away and I took her to the hospital where she was diagnosed with congestive heart failure. The doctor told her she'd had several small heart attacks in the months after Dad died. All the frenetic activity had not been good for her coming on top of months and months of little sleep and a lot of care for Dad.

I'm sure my sister had anticipated that once Dad passed away, her life would pretty much return to normal. She had plenty of interests that she could still enjoy – driving, shopping, perusing the Internet, puzzles, arts and crafts, gardening and cleaning.

The heart attacks and diagnosis of CHF struck a devastating blow to her psyche. She became more withdrawn and cranky. It slowed her down significantly and contributed to her already shaky equilibrium.

Eighteen months after Dad passed, in the summer of 2003, Pris decided to have the house sided. She always had a habit of using whatever local workers she could find on her own, without ever checking credentials. For someone so savvy in the business world, this would often leave her with problems.

For example: from the time Dad died until Pris passed away, she insisted on using the same mechanic for her oil changes. He was local to our town and had a very poor reputation for lousy work, overcharging and claiming problems that didn't exist with your vehicle. We had been burned by him at least once as had several people we knew. Despite these testimonials, Pris dug her heels in every time and continued to bring her vehicle back to this guy.

So it was the same with the siding contractor. A small, local business, the owner sent two people over to do the job. While the siding has more or less held up over the years, the problems that presented themselves during the two weeks it took them to side the house nearly drove my sister to her grave.

And cranky? She was off the charts miserable. I couldn't talk to her at all.

Over the subsequent years, I determined that my sister was a very angry woman. Gone was the talented, savvy woman who worked so hard at her job 20 years before. Gone was the incredible sense of humor.  If you didn't do what she asked when she snapped her fingers, she would explode. Often her explosions had no explanation, no merit, and came out of nowhere.

My husband, my son and I learned to tiptoe around her, though I was usually on the receiving end of her tirades.

I eventually got some things out of her that helped me to understand her behavior. Life had dealt her some difficult blows.

Because there was 15 years between us in age, she was raised in the '40s and '50s, while I was raised in the '60s and '70s. Our parents were born in the early years of the 20th century and had an incredibly difficult time adjusting to life as it was in the 1960s and 1970s.

When Pris graduated from high school, she wanted to be a missionary. Looking back at her school years, she was very popular and well-liked. She was on the debating team, yearbook and newspaper staff, played sports and loved the drama club. She was active in Girl Scouts and had a very popular column in the city's newspaper while in school.

This was not the same gal that emerged from college with a teaching degree. Mom and Dad refused to allow her to become a missionary. She was to be a teacher or secretary – that's it.

It would take many, many years for this to come out of Pris in a huge display of anger – and she waited until both parents were gone before letting it out.

She only taught school for one year, souring on it very quickly. Prior to that, while she was a student teacher in Newark, NJ, she had disciplined a student in her class early one day and at day's end, she had her back turned to the door and was writing on the blackboard in the rear of the class. She suddenly heard someone shriek behind her and turned to find the student she had disciplined with his arm raised, a knife clutched in his hand, ready to plunge it into her back when the regular teacher had walked into the room and caught him before the deed was done.

Nevertheless, despite the close call, Pris finished college and got a job at the high school in Vineland, N.J., where we were then living by then. After just one school year she'd had enough.

Mom and Dad quickly pushed her into a banking career, having a parishioner who worked at a local bank; he helped Pris get a teller job.

It turned out that Pris had found her niche. She was really good at handling money and quickly moved up through the ranks into the Trust Department. She was well-respected in her job and managed to withstand every merger for the next 27 years, ending her career as a Vice-President in charge of Trust with J.P. Morgan Chase.

She hated every minute of it, but she was very good at what she did.

She ended her career despising most men, a consequence of having worked in the business-like setting all those years when men were paid more than women, more well-respected than women, and got away with misbehaving much easier, along with sexual harassment being the larger order of the day.

She was laid off in 1992 when her branch closed and, not wanting to transfer to New York, she decided to come out to Missouri where Dad was clearly in need of being looked after.

After one year of searching for work and finding herself overqualified for that which she was trained to do, she had a massive stroke in 1993.

By 2003, she was a bitter, angry woman. She not only had suffered the debilitating stroke in '93, diagnosed with congestive heart failure in 2002, but she had severe diabetes II, macular degeneration and glaucoma, as well as high blood pressure.

No amount of medication or diet lowered her triglycerides. There was no joy in her life. She was limited on walking, which affected being able to take herself to the mall, or visit some of the small towns out here that offer boutiques and interesting antique shops in which to browse.

My sister never married, but did have a bit of a romantic life during her younger working years. Used to living alone, she had a difficult time understanding what it was like to live with someone else, so she spent a great deal of time in the years after our Dad's death, being angry at him for things he did that merely illustrated that he was simply a man. Living with someone else requires anyone to have a measure of compromise in their life. All the years of looking after Dad demanded that Pris would often have to sleep at his house and otherwise spend a great deal of time doing things for him.

His habits annoyed her. Our habits annoyed her.

How do you help someone whose own choices in life created the hell she was living in? She chose to smoke cigarettes for 35 years, not exercise and work in a very stressful atmosphere.

Not only was she angry at our parents for her career path, but she was angry at herself for her own choices.

Looking after my sister was a lesson in compassion and strength.  While she was angry, she could also show the most compassion and caring attitude that I've ever witnessed. She always donated to the needy, anonymously, every year at Christmas. She took care of us, especially me in every hour of need. She was there for me throughout my entire life.

She never gave up and she fought life's battles with ferocity.

In 2005 she suffered another heart attack and had to be hospitalized with severe symptoms of her congestive heart failure. At the same time and for several years after, she suffered from additional problems with her eyes, though by 2009, her eyesight had finally improved.

In 2008 she had another stroke and was hospitalized for that, along with the edema that collected around her heart. Her kidneys were beginning to fail.

Still my sister persevered.

She drove herself to the city to shop, went antiquing and continued doing her own housework. She was rarely idle.

With sleep elusive to her much of the time, she went to bed very early and was up by the crack of dawn if not before. It was a frequent sight to be making coffee at 6 a.m. and see her in her backyard pulling weeds – her head covered in mosquito netting.

She learned to live with her limitations and found ways around everything. She tried new diabetic recipes and began enjoying the art of cooking. She and I traded books, often discussing the plot lines. She reveled in my newspaper work and eagerly read my columns and gave me advice – that English major she once was proving that her education was not for naught.

Every year would bring me to the conclusion that it was her last Christmas, but every new year brought new surprising examples of Prissy's tenacity.

It is amazing at what the human spirit can endure. Years of suffering, years of limited activity, limited mental acuity, limited enjoyment of life – yet a person will remain plugging away at life.

Through it all, I am convinced that Pris knew that God had a purpose for her and she had to remain faithful.

By 2012, however, things began to change.

Progression of a disease – death and dying is not for the weak of heart – Part 3

At 1:18 a.m., on a cold February Tuesday morning, my father drew his last breath. Up until that point in my life, I had never been with anyone when they died, I had been en route to the hospital when my mother passed away 20 years earlier.

Dad's passing was peaceful and handled well by Kansas City Hospice. Back in that day, hospice care meant that the nurse came to the house twice a week, arranged for the meds, advice and medical equipment you needed and nothing else. The nurse was the one we called to report Dad's passing and we waited for her to arrive from where she lived a few hours away.

Dad lay still in his hospital bed, in his beloved office at his house – right where he wanted to die. Priscilla and I were exhausted. I had only had one hour's sleep – she hadn't slept in over 48 hours and went into overdrive.

While I sat back bemused, Pris started cleaning the house while we waited for the nurse to arrive. It was as if she had stored up several days worth of energy for this one moment of frenzied cleaning.

Our brother was already booked to fly in later that afternoon and would be staying at Dad's.

Nearly two hours after Dad passed away, the nurse got to the house and officially declared our father dead, relying on our report of the time of death. She called the funeral home director who happened to be a close friend of Dad's.

Ken got out of bed in the middle of the night and came himself to tend to his old friend. I had spent the previous few hours with my Dad, unwilling to let go of him while my sister frantically cleaned every inch of the house.

When Ken got to the house, it all hit me. My daddy was gone and not coming back. His body was leaving the house he loved on a stretcher, his face covered by a sheet. I went into hysterics.

Poor Ken was in tears himself – he and Dad had, for years, enjoyed early morning breakfasts downtown. He was taking an old friend to the funeral home and that couldn't have been easy.

I obsessed over Dad's face being covered as if that single act would signal the finality that he was truly dead.

My sister pulled me out of the house and into the garage where I couldn't see anything. I was still in hysterics.

My Daddy was gone. Gone was the man who walked me all over Fredericksburg, Virginia as a baby in the stroller – proudly declaring to all that I was his new daughter. Gone was the man who drove me to the library every Wednesday afternoon as a youngster so we could each check out a book to read – he had cultivated my love of books. Gone was the man I loved to walk with every day as a child and as an adult, my hand tucked into his.

Whenever I whined that my feet hurt, he would say, "Yes, dear. Take your foot off and put it in your pocket." Somehow, what sounded insensitive actually did the trick and my feet stopped hurting.

Gone was the man whose constant humming never annoyed me, but delighted my very soul in the absolute joy HE got out of life.

Gone was the man who had a difficult time hugging and saying he loved you, but who sent me a birthday card on my 40th birthday that simply said, "My baby is turning 40."

Gone was the man who, just the summer before, had grinned so broadly at a sweet waitress in a small town in Missouri, that I realized just how charming he was to everyone.

Gone was the man who could "guffaw" like nobody's business over the silliest things. Who got on all fours, even into his 80s and would chase my sister and I all over the living room snorting at us. What "got us" as kids, still "got us" as adults.

Gone was the man who worshipped the ground my little son walked on. He was the grandpa who now proudly introduced "my grandson Cody" to everyone before he introduced Pris and I. All the photos I have of my Dad and my son from Cody's youth are of my son trailing behind his Grandpa ... from the shed, from their morning walks, in the office, on the porch, in the living room – even as 10-month-old who couldn't walk yet, sitting on the kitchen floor watching his grandpa cook.

Gone was the man who once admitted to me that he fell in love with our mother because he loved her whimsical smile.

Gone was the man who, when I was young, I never thought had a backbone, but proved he did when he stood up for me to an abusive boss I had at 17, and before that, to the neighborhood boys who used to chase me with snakes.

I sobbed and cried that night as they hauled my Dad out of his house, face uncovered at my orders – the stretcher pushed by an old friend, tears running down his own face.

Six days after he passed away, my dad was laid to rest next to my mother – his headstone the same as hers, containing his name, dates, and below them, the simple word – Priest. His utter devotion to God was his final declaration.

Before I knew it, 10 years had passed since I became an orphan. Life did go on. My husband, son and I moved into my sister's home and she moved into Dad's. It was our duty and privilege to look after Priscilla now.

My son handled his grandfather's passing with stoic grace. He weathered years of bullying here in this old Midwestern town. Some of the taunts included heinous accusations made against him and his grandfather because he constantly visited his grandfather's grave. He withstood it all and never wavered in his love and admiration for his grandpa.

My Dad's quiet faith, love and grace changed all of us.

It's now been 11 1/2 years since he left us and in less than two weeks, it will be the 31st anniversary of my mother's passing. It's true that it gets easier to lose a loved one, but thankfully, the memories never go away. They become more rich with time and should never be forgotten.

I can remember my parent's voices. I can hear my mother call my name when she'd get annoyed with me, "Elizabeth Anne!" I can hear my father laughing out loud at something funny, which he often did. He had the best sense of humor in the world.  I can hear his humming and the jingle of the change in his pocket as he waited for us all to finish getting ready to go somewhere – he was always early!

In recent years as Facebook as exploded with the rush of social media, I have run into many people who remember my Dad. These tidbits of remembrance have warmed my heart more than anyone could know. One man told me Dad influenced him into becoming a minister. Several others warmly remembered being acolytes for him. Another told me that my father's sermons helped me become a believer in Christ. Still others simply attended our church and remember his voice, his preaching, his kind personality.

When I wrote for a local newspaper several years ago, I had written an opinion piece about my Dad and was contacted by a woman who said my father married her and her husband many years before. She spoke of how gracious he was, especially when their car broke down and they were late to their own wedding.

We all think no one will remember us. We all believe we've not made a difference in someone's life. We all believe we somehow never quite measure up to an ideal we have in our minds.

My father was no different. On his last Father's Day he said, "I'm so sorry I wasn't a good dad."

I was shocked. Not a good Dad? "No," I told my father. "You weren't a good dad – you were the best there ever was and I'm grateful every single day that God blessed me with you." He rewarded me with that dimpled grin of his.

Not a day goes by that I don't grieve a little for my father. I miss my mother, but my strongest bond was always with dad. I never learned that he spent so much time with me as a young child until my sister told me several years ago. He was in his 40s when I was born and older and wiser than he was when my brother and sister were little. He had been a very busy young minister during their youth and he was determined to not miss a moment.

Lately, I've watched many of my classmates going through similar circumstances. Just today, one mentioned that his father recently died and now he had to sell the family home. That thread of conversation led to many others expressing similar sentiments.

It's never easy to lose one's parents (or any other loved one). Our childhoods are usually something very precious to us. I can easily say that mine was as perfect as it gets, despite being bullied. My parents loved me and took great care of me. They taught me right from wrong, to stand up for what was right and against what is wrong. They provided me with wonderful family vacations every year and a strong sense of family. They brought me to my faith in God and love for Christ.

Countless nights were spent around the old TV, watching Disney, I Love Lucy, Laugh-In, Car 54 Where Are You?, The Honeymooners, Carol Burnett, All in the Family, and my mother's favorite, Masterpiece Theater. Most families don't spend that kind of time together anymore.

As we age, I can only pray my own son will remember me with as much fondness as I remember my parents. That he will hear my voice in his head years after I pass on. That he will some day remind his children of the great times he had with his grandfather and who he was.

Our parents are our legacy and we are our children's legacy.