Wills are done, now to set up the estate – Part II

So you've got your will in your hands, what's next?

Firstly, store your legal papers somewhere safe, such as a safety deposit box at your bank or a fireproof lockbox. Make sure that someone responsible, such as your executor, knows where the will is stored and where the keys are to the safety deposit or lockbox.

Your attorney will also have a copy of the original will.

What about all the extras in your home? Who gets those?

Our attorney told us to keep our will as simple as possible and keep it out of probate (regarding Missouri probate laws). So, we were able to compile a list, separately, of items within our home that we wish to be dispensed to specific people. Our executor is responsible for seeing that this gets done.

If you have a huge estate, you will need to take stronger, more legal measures for distribution of household items. Smaller estates in families where dispersement should be fairly simple can utilize the list method of logging who gets what from the estate.

Go through your home and determine what items are of sentimental or dollar value and what should be left to specific loved ones. Make a list of that dispersement starting with instructions for your executor at the beginning.

I also prepared a history of any and all items either on the dispersement list or simply those that have sentimental value, i.e., family heirlooms.

With things in the family being passed down from generation to generation, the stories behind the items often get lost very easily. My mother kept good records with regards to old family heirlooms as did my sister, who went one step further and made her list digital.

To compile a list of family heirlooms, simply begin a document, list the item and follow that with the family history: where did the family get the item, the history prior to the family ownership, and any other pertinent information. Plus, it is a good idea to look each item over carefully. For furniture, pull out drawers and/or the furniture away from the wall and look for manufacturer's stamps, year of manufacture and any other important information. You should include this on the item's biography and also shoot a photo of it. Additionally, one can Google the item and possibly find an approximate value for it.

Whether you are interested in the "value" of an heirloom or not, Googling the item can help provide interesting biographies on the heirloom, which can assist the executor of your estate or recipient of said heirloom in making a decision as to whether to keep it or not.

Never take it for absolute truth that an item is not worth anything. You just never know what treasure you have sitting in your basement, garage, attic or closet. You also never know who in your family might just want an item, so if you want to get rid of something while settling an estate, you can search out family members who might find the piece a treasure.

Keep this list digitally – there are plenty of Online sites that offer free storage (always worthwhile in case of a fire or crashed computer). Make sure to print a copy to keep with your wills and update every few years.

Lists and more lists

My sister was single so she had innumerable lists for every conceivable thing in her household. I used to think she spent far too much time compiling these until I had to deal with her estate. Now I owe her thousands of kudos for that lesson in planning.

The 21st century family unit is no longer the same as it was 100 years ago. Nowadays not every family includes two parents. Most often, the adults work and as a nation, many families are in debt up to their eyeballs.

In other words, life is much more complicated today than it was 100 years ago. That being said, when preparing your estate, think about what the person being left behind will have to do if something happened to you – and ask yourself a few questions:

     • Does your survivor know what bills you owe, where they are and how you pay them?
     • Does your survivor know what insurance policies exist?
     • Do you have assets such as IRA, 401K, stocks and does your survivor know about them?
     • Do you have a computer, tablet, ebook or other electronic equipment?
     • Do you own a home? What repairs have been done – dates, expenses, materials used, company?
     • History of the household can be invaluable for an estate, especially when having it reappraised for        an estate or when the beneficiary has to have insurance rewritten.

These are just a few of the things you will need to consider. Prepare all areas of your estate with the idea in mind that someone with zero knowledge about your finances, assets, computers and home may be stepping in to handle everything – so make it easy for them.

     • Make a list of all passwords and security for all online access from making purchases, warranties, ebooks and tablets to insurance, financial advisors, banking and bill paying. It will be up to that person to close out all accounts, including your email, and/or transfer ownership of said areas to their name or the beneficiaries name.
     • Store a copy of this list digitally and consider using an Online free storage bank, along with making a copy to keep with your estate papers. Be sure to update this list several times a year.
     • Comprise a checklist of all bills you pay regularly: this includes name of company, date due, approximate payment and balance at time of making the list. Part of every executor's job is to pay of all debt before any monies can be distributed to beneficiaries.
     • Keep a neat and orderly computer: Make sure your computer, or other electronic device, on which you keep bill-paying information is neat, orderly and easy for someone to access in case of an emergency.
     • List of people to be notified: I utilized my sister's address book for this and it was simple enough. However, considering the use of social media today, we have more acquaintances from work, friends and through social media that notification of death can be overwhelming. If there are special people you want notified, then be sure to make a list, along with emails or mailing addresses for your executor to access.
     • List of all household expenses, etc.: My sister had a file box containing a history of everything done on the house from the most recent roof to appliance installations, plumbing and electrical repair, along with the businesses used and notes about the workmen's capabilities. She even had samples of paint codes used when she painted and renovated each room.
     • Taxes, property and personal: It is very helpful, especially if your estate goes into probate, to have recent property tax assessments and personal income tax files for the executor to readily access.

Life can throw us some unexpected curve balls. It's better to plan ahead than leave someone you love holding a complicated life you've created with no directions on how to tackle it.

You never know when you walk out the door each time whether you will return home at the end of the day. It's best to plan for the unexpected. A local funeral home's motto is, "Plan ahead and leave well."

I couldn't have said it better.

Insurance policies, financial planning ... beneficiaries

Most of us have insurance policies through purchasing them ourselves, work, automobile and other avenues. Many of us have 401K's, IRA accounts and possibly financial advisors as well. If you have a financial advisor, you are one step ahead. If you don't – I recommend getting one.

Financial Advisor: A financial advisor will provide invaluable advise for handling your invested money and planning for your future. An advisor can advise you, without prejudice, what you need to do in your life to plan for retirement or your beneficiaries.

Beneficiaries: Make sure you have these in order. What beneficiaries you chose for insurance policies 20 years ago may not be the same now. Be sure to have a list of all insurance policies and their beneficiaries, as well as all investments and their beneficiaries. An executor will need this list.

Payable on Death: Usually insurance policies, investments, 401K and IRA accounts include a first and secondary beneficiary to be listed. Many investment companies require a power of attorney to be appointed as well – this does not have to be the same person as the POA you state in your will.  Payable on death means the monies can be distributed according to your beneficiary designation once a death certificate has been provided. Be sure to find out what each organization requires. Some may require just the death certificate, while others require medallion signature guarantees. These are not done by all banks, so you will have to search for one that does and if you are not a customer, there will be a fee.

Banking: A joint checking account means your significant other – or another person of your choosing, can access your money in the event of your death. This is helpful so that your loved one is able to continue paying his/her bills, rent, utilities and pay your estate expenses, such as funeral and burial.

Power of Attorney: It is important that anyone appointed power of attorney is aware that this appointment ends at the moment of death. Appointing someone as power of attorney does not mean they can use your bank account to pay your bills or other expenses after your death unless they are a joint account holder, or until the death certificate has been released and estate is in probate.

Planning your own funeral

No one wants to think about this dreaded part of life. We certainly won't be around to be happy or sad with the funeral our loved ones hold for us, but it's best to plan ahead and leave instructions for your executor on how to handle your final hurrah.

Funeral: If you can afford it, purchase a pre-paid funeral plan from the funeral home of your choice. This is a legally-binding document that you pay for ahead of time. This means that, hopefully, by the time you die, your loved ones do not have to cope with paying for your funeral or deciding upon all the things that are tied to it. When a person dies, whether it's sudden or after a lengthy illness, family members are in no shape to be making decisions about what casket to purchase, programs, photos, memorabilia, etc. If you can't afford to set up a pre-paid funeral plan, then make your wishes known in a simple letter to your executor and keep it with your legal papers. The following are things to consider:

     • What kind of coffin, vault and interior cloth? These can be outrageously expensive. Keep in mind that dead is dead and, frankly, no matter how much money you spend, it's all going into the ground and will never be seen again after the funeral. Don't let anyone talk you into purchasing more than you need. A vault with a 100 year guarantee is ridiculous.
     • Services you will want from the funeral home/church: Wherever you wish to have your funeral held should be part of your funeral planning list. The visitation is part of this service as well. Open or closed coffin, hairstylist, make-up, jewelry, final clothing – all of these decisions have to be made at some point. Do you want to pay extra for a limo or drive your own car? If you don't have enough people as pall bearers, then the funeral home will provide them – for a fee.
     • Funeral services: You've decided where you want your funeral to be held. What about scripture? Music? Minister? Having been raised in the church, my sister was very specific about what hymns she wanted at her funeral and what scripture to be part of the liturgy. Usually this can be conveyed to the minister holding the service and he/she will work with you to the best of his/her ability and within the confines of the church policy.
   

Setting up your estate is not rocket science – Part I

I’ve managed to float through 50+ years of life without being responsible for a loved one’s estate. When my mother passed away, my father and sister handled it. When my dad passed away, my sister handled his estate. Nine days into this year brought with it the sobering fact that my sister had a short time left to live and I would be tackling her estate sooner rather than later.

I knew she had her affairs in order – it was what she did for a living for 27 years and was, if nothing else, fastidious in her record-keeping. She was suffering from congestive heart failure, among a number of other illnesses and knew her time was short – thus she prepared everything ahead of time to make it easier on me.

I will always be eternally grateful for her preparation. For not only did I have to handle her estate this year, but prepare our own and set up my mother in-law’s as well.

Decide how you want your will set up

Firstly, one has to get over the unpleasant thought that they are going to die. We’re all going to die someday and it’s best to face that fact, put it behind you and set things up so your loved ones have your wishes clearly defined.

My parents always had wills – one for each of them – and we knew where they were kept. With that in mind, I pushed to get one done as soon as I learned I was pregnant with my son years ago. However, having your will done when you are 32 also means it may need to be updated as you age.

I purchased a software program about 10 years ago and used the templates provided to re-do our will as simply as possible. This step requires one to have the will notarized in front of witnesses, but in lieu of hiring an attorney, this is a great way to start.

There are also a number of legal websites that offer will services for a small fee, and for simple estates, these can also be completed without breaking a sweat.

After handling my sister’s estate, I knew what an executor would need in his/her hands, so I had our wills prepared with that in mind. For $500 I hired an estate attorney.

It’s worth every penny.

An estate attorney knows the probate/estate laws in your state, what papers have to be filed and all the legalese. One thing I loved about doing this was that our attorney knew how to set up our estate so we wouldn’t have to go through probate when one or both of us died. This effectively meant she would not be hired to handle probate down the road.

The money is well-spent because you receive a legal notarized will, power of attorney papers and health care directives.

One day you, your executor or power of attorney will need one of those legal documents.

The next step is to make a list of what should go into your will, along with questions for your attorney. For fairly simple estates, you don't even have to list out all your possession within the will – just the larger ones, such as property. Possessions – furniture, paintings, jewelry, etc., can be listed out separately and attached to the will for your executor to disperse after the will has been read and gone to probate.

Probate laws can make or break your will – Use "transfer on death"

My sister’s will was a simple as could be – two pages long. She’d drawn it up herself and had it notarized, but had not kept up on new laws in our state, thus we had to go through probate, which meant a minimum six-month waiting period, attorney fees, court filing fees and publishing legal notices through the local newspaper. It was expensive.

I advocate hiring an attorney to set up your will. However, if you prefer to set up your own will, you can search online for “probate laws” in your state and usually find a downloadable PDF in which the laws are explained.

Most people are unaware that they can execute a “transfer on death” (TOD) for property and motor vehicles. Usually you can set up your motor vehicle title this way at the time of making your purchase or when registering it. A TOD (beneficiary deed) for property can likely be done at the county clerk’s office or at the time of sale. 

One of the benefits of TOD on property is that it prevents children from assuming control of a parent’s property and then moving them to a nursing home so they can sell the property out from under them – essentially it helps prevent elder abuse.

You can also set up retirement accounts and other securities with a TOD through your financial advisor. This also can release funds into your beneficiaries hands that may be needed long before probate (if your estate goes through probate) is completed.

Again, using an attorney to set up these provisions in a will can help alleviate problems that might arise. One such problem that can arise is that a sometimes a TOD is set up without a provision should the beneficiary predecease the owner.

An attorney can target the usual possibilities and tackle them within the will.

Because my sister’s will did not include transfer on death, her vehicle and her home became part of the probate, along with all items in her home that I, her only heir, chose not to keep.

Every item I chose to sell had to go to auction and proceeds went into an estate account. After the six month probate period was concluded, I paid substantial fees to the attorney and court.

I don’t want to think about my death, let my children handle it

It is a mistake to think this way. So many of us do not want to face death. Even my sister, who quite matter-of-factly knew for two decades she had a fatal condition and spent years preparing her home and estate to make it easier on me, still spent weeks in denial after the doctor told her that her disease was in end-stage.

I have a relative who is a cancer survivor, owns his own home and has a number of grown children. He still does not have a will. It’s a recipe for disaster.

The next installment of this series will cover ways to prepare your estate outside of the will preparation.

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.