Stories from Indiana

Jeane's Story

Before I ever had any personal knowledge of hospice, I thought it must be a good thing.  To be sure, for some people it is.  For me, I didn’t like what I saw in the care of my dad.  It made me wonder if others had a similar experience or had been left with feelings of distress and guilt.

Looking back, I can see the decision to use hospice was really coerced by the hospital wanting to dismiss my father from the hospital because of Medicare regulations.  He had broken his hip (most likely due to a side effect of a prescription medicine he had taken for years to thin his blood) and as a result of the break, had fallen.  Before the fall, my dad was a pretty alert guy.  When he was taken to the local ER (which is a satellite location of the hospital from hell), the young ER doctor almost immediately said in the presence of my father that he was dying and there was nothing he would do for him.  I could immediately see my father shut down.  All he went there for was he had broken his hip.  This ER doctor had said all this without doing any tests.  It was as if an order for my father’s death had come down from above.  Above where I will leave to the reader’s imagination.  My father laid in a hospital bed for almost 3 weeks while the hospital made its money from him until one day they said he needed to vacate and that is when they said hospice was the best fit for him.  It makes me angry to think that we as taxpayers can spend millions of dollars keeping old politicians like Jimmy Carter and George HW. Bush alive but a simple man like my dad can be handed a death sentence like one can get a glass of water.  My stepmother had all of us sit in on the talk but due to the pressure of him having to be gone the next day or so, hospice was decided upon. 

We had no training.  We had no idea what to expect.  They brought in a bed for him and shortly they delivered him along with a bag full of 5 drugs with at least three of them being very powerful narcotics.  He was to take them as directed.   He was not allowed to have food or water according to the hospice RN.  She said he would mostly sleep which meant they intended for him to be unconscious as he was being killed.  There was no instructions of care for him.  He was literally dumped on people who had never given this type of care before and who had no idea if they were harming him or not. 

Whenever the drugs were wearing out, he would cry for water and cry for food.  At first we didn’t but he was so pitiful we did.  We didn’t know if it harmed him or not.  My father was a proud man but how hospice works is that all care including intimate care is given by the family.  My dad would have rather died on the spot than have his daughters and granddaughters provide intimate care but hospice didn’t care about his proud.  They cared nothing about him.  Thankfully, my adult son came to his rescue and did the intimate care when he could.  My stepmother was 78 and wasn’t physically able to turn him so my son again helped her or else she would have become sick.  It was hell.  We were just waiting for him to die because they said he must die.

And die he did.  He was dead before the week was out.  Just 2 days shy of his 88th birthday.  Because of hospice’s policy to keep their victim drugged and because he had already shut down from being told for him a broken hip was a death sentence, we did not really get to have those long talks and to have him present to say good-bye.  (I am crying as I write this because the pain of how my dad was forced to die is so very raw still after six years.) 

I remember the hospice RN came for her one visit.  My stepmother, my niece, my son and I were there.  My niece because she was a social worker and tells everyone she is, was the one the RN spoke to at this visit.  The RN said as my stepmother walked by that “my stepmother was just too emotional and just not educated enough to understand.  The RN went on to say she knew my niece was highly educated.”  I was speechless.  I looked at my son and hoped he would not spring up.  I could tell he was fighting the urge to but was showing remarkable restraint.  It is funny because although my niece did have a college degree it was from a school not as prestigious as the university my son had just recently graduated from and in addition, my son has won many, many educational competitions.  The RN didn’t check on my dad but rather sat on the couch and conversed with my niece about everything except about my father. 

The next day, my stepmother called because she was worried about my dad.  I went up there and my stepmother had heard what the RN had said.  She had so many questions about my dad’s care.  She didn’t want that RN back so I made the call to hospice and was able to get another nurse, a male RN to come.  I will say he was very nice and gave us the information on the medication that we weren’t given previously.  We were able to ask him about the water and food.  He told us unofficially what we could do as it is hospice’s policy to deny nutrients.  We had to be careful for him not to choke.  One of the medicines they were giving was to dry up his salvia. 

A few days later, a hospice aide came to give my father a bath.  She did not provide any privacy for this.  She acted as if exposing him to everyone was acceptable.  She didn’t keep him covered as my son was sitting in the chair with the view.  They knew he was getting bed sores from laying immobile as he still had a broken hip and their response was to up his medicines.  Of course, by upping his medicines would cause him to die much sooner than later.  Because he would cry not only for food and water but because of the pain of the broken hip and the bedsores, we had no choice but to follow their instructions. 

This is just a short summary of why I would not ever want hospice.  Of course, hospice is pushed on people because it does save Medicare money because the patient is not in a hospital receiving medical care.  But for many of us, we go into hospital not knowing how to care for another human being.  We are thrust into a world where we may not get proper instructions or training and the hospice provider we are dealing may be just in it for the money and thus wanting the patient to die sooner rather than later. 

This is first part of some articles I am going to do on hospice and elderly care in general.  I wanted to do a personal story in order to give perspective.  I am not talking about something I have not experienced.  For me and other members of my family, the experience was a nightmare.  Losing a loved one is hard enough but when you are thrust into being part of a hospice nightmare, it is something you will never forget.  I know the scars I carry from this will never go away.