By K. Challender
It has been nine months since my parents’ deaths, and I am still in shock over what happened to them. My father had Alzheimer’s disease and my mother had another form of dementia. When it became clear that they could no longer handle everyday activities, my three sisters and I hired help. It wasn’t enough, however, so we followed up on a suggestion to involve hospice services so that Mom and Dad could stay in their home as long as possible. We had meals delivered, nurse’s aides to help them, hospice nurses checking in twice weekly, and hospice aides and music ministers dropping by. My sisters and I were also taking turns spending the weekends with them.
The hospice agency had told us that a prognosis of six months or less to live was required in order to receive hospice benefits, but assured us this was just a Medicare requirement and did not mean Mom and Dad would actually die within six months.
Despite all the help, it became apparent that my parents needed full-time care. A hospice counselor recommended a nearby private-pay home that provides adult care. The main part of this home had no openings. However, since my parents were already receiving hospice care, they were eligible for the hospice wing. Unfortunately, that’s where they were moved. My parents were physically healthy. We did not move them to this home to die, but rather, as a way to help them thrive.
My father, who had been active his entire life, never sat still for long. He had taken to pacing almost nonstop. My mother could be quite snippy, but if redirected, she’d snap out of it quickly. The staff of the hospice wing knew all this and kept assuring us that it was no problem and they would be fine.
A land of zombies
Shortly after their admission, the home suggested giving Haldol to my dad to “slow him down,” but the hospice nurses said that wasn’t necessary. When they refused to give Dad Haldol, my sisters replaced them with another hospice agency. They hired one that had worked with this home in the past and worked in unison with a palliative care doctor. The result was that Dad was put on a daily dose of Haldol.
I researched Haldol and was alarmed to find that it is an antipsychotic drug often used to control dementia patients. It also has dangerous side effects. After I expressed my concerns, Dad was put on Seroquel, a newer version of Haldol. There are specific warnings about Seroquel causing strokes in the elderly, as well as many other nasty side effects, such as loss of bladder and bowel control, blurry vision, dizziness, and confusion. It dawned on me that the residents in this home did not spend their days with their mouths hanging open, sitting docilely in wheelchairs, and unable to feed or dress themselves because of their illnesses, but because they were all being controlled by drugs. Dad became one of these zombies.
Mom was angry and confused. She wanted to go home. The home disliked her angry outbursts. Within a month or so, she too was being controlled with Seroquel. The Seroquel just made her angrier, so the hospice kept upping the dosage. Eventually, my mother was hallucinating continually, no longer recognizing her family or where she was.
An agonizing and mysterious death
One day, my father collapsed. I was told he had a virus and wasn’t bouncing back, so the palliative care doctor had been called and would be checking in on Wednesday (this was Monday). I called the home to find out what was going on and was told I should come as soon as possible. When I arrived, Dad was lying in bed, kicking one leg as if in pain. He was unbelievably thin, his breathing was extremely labored, and even though his eyes were partially open, he did not appear to be able to see or hear anything.
My mother was completely unaware that her husband of 67 years lay dying in a bed a few feet from where she stood. She did not know who I was or where she was. I spent the day going back and forth between my parents.
Mid-morning, I saw Mary (who ran the hospice wing) administer a blue liquid to my father, saying it was for pain. I realize now that it was liquid morphine. At that time, I had no clue that many hospices are notorious for euthanizing patients. Thus, it had never occurred to me that the hospice itself may have played a major part in my father’s rapid decline.
A hospice nurse came in the afternoon. I was not in the room with her when she was with my dad. I don’t know if she gave him anything, but within a few hours of her visit, he passed away, one day before his 88th birthday.
I would later find out that my father had collapsed 10 days earlier and Mary and the hospice nurses were sure the cause was a stroke. This information was withheld from me at the time. My sisters, following the advice of Dad’s hospice nurse, had taken a “wait and see” approach, and decided not to send him to the hospital. Dad hit his legs when he fell. Mary suspected that he had one or more broken bones. A week after he died, Mary told me she had to wonder if he’d still be with us if he’d been sent to the hospital. She seemed grieved by her part in the whole thing. I was in shock. I would like to know if my father was given scheduled doses of morphine after his collapse and was accidentally or purposely overdosed. I have not been able to get answers from anyone regarding this, but it is my personal suspicion that my father was euthanized.
A very intentional death
The day after my father’s death, Mom fell three times in a 24-hour period. Due to the high dosage of Seroquel, her vision had become blurry, and she was dizzy, hallucinating, and unsteady. My daughter-in-law, a nurse, stated she felt the amount of Seroquel Mom was receiving was “enough to kill a large man.” (My mother was a tiny woman.) Mary agreed with her but said the hospice had ordered it, so her hands were tied.
Mary was worried that my mother might have broken her hip. An x-ray was ordered and she was given a small dose of morphine for pain, which helped her sleep through the night. The next morning, my mother’s 85th birthday, I called and was told the x-ray had been done, but they wouldn’t have the results until later. This was untrue.
A hospice nurse had checked on Mom, and told my sister that an x-ray would be too painful and the “treatment” would be the same either way. So, the x-ray had been cancelled and my mother was put on a four-hour morphine protocol (i.e., she was given a dose of liquid morphine every four hours, which kept her in a morphine induced coma, unable to speak, eat, or drink). I asked why and stated we needed to know if her hip was broken or not. The nurse responded that we needed to keep her still so she wouldn’t reinjure herself. None of this made sense, so when a different hospice nurse came in the next morning, I asked why they didn’t at least have an IV hooked up so Mom would receive nourishment. She said, “We don’t do that.” I said Mom would starve to death if they didn’t. This nurse replied that the body can go an amazingly long time without food or water, squeezed my shoulder and left the room. I was dumbfounded and still in a state of shock over watching my father die. I hadn’t slept in days and everything was emotionally overwhelming. I truly think this hospice was counting on that!
The morning after my father’s funeral, my husband, my son, and I went to the home. While my husband sat with Mom, my son and I went to Mary’s office. I asked her point-blank if they were euthanizing my mother. She told me yes and said this was the hardest part of her job. She told me the hospice was working closely with my sisters, and they had agreed to this protocol. After a lengthy discussion, Mary said she felt it was not too late to save my mom, and we were determined to try. My son, Mary, and I agreed it would be best to reduce the morphine Mom was being given by spacing the doses farther and farther apart and to try to give Mom some nourishment. We also agreed an x-ray should indeed be done. When one of my sisters showed up a bit later, I asked if she realized they were euthanizing Mom. She looked shocked, as if that hadn’t even occurred to her. She agreed this was crazy and assured me she’d demand an IV when the hospice nurse came later that afternoon. My sister also agreed we needed to know if Mom had a broken hip.
I live more than three hours away, so we headed home. When we were halfway there, the hospice nurse in charge of Mom’s case called me. It became clear she had convinced my sister that continuing the morphine protocol was the right thing to do. My other two sisters were already “on board.” I told the nurse she was euthanizing my mother. She said she didn’t like to use that word; she preferred “palliative comfort.” She also said my mother wouldn’t want to go on living without my father. When I responded, “You don’t even know my mother,” she said, “Well, yes I do. I’ve visited her quite a few times at the home.”
I told the nurse that Mom had been hallucinating, dizzy, having blurred vision, and falling because of being overdosed with Seroquel. She admitted the dosage was extremely high, but said Mom had become “fun and silly,” and said that was much better than being angry. She felt the hospice had “achieved” its goal. After about 45 minutes of this woman trying to convince me that she knew what was best for my Mom, she realized she was getting nowhere and told me the hospice only did what families wanted. She suggested I talk to my sisters if I was not happy about their decisions. My sisters were convinced that the morphine protocol was the right thing to do, so there was no discussion needed as far as they were concerned. My son called one of my sisters and demanded an x-ray be done. One was ordered but again delayed, and by the time the x-ray results were given, my mother had passed away. She died 11 days after my father’s death.
Mom died on a Saturday. On Monday, I called the doctor’s office and was read the x-ray results. There was no fracture, no bone lesion, and no soft tissue swelling, nor were any foreign bodies identified. I requested a copy, got off the phone, and bawled. My mother was euthanized for a bruised hip and for having dementia.
Since then, I have done a lot of research on hospice programs and have discovered that the type of treatment my parents received is quite common. I don’t think most people really believe this can happen in the United States until it happens to someone they love.
My daughter-in-law reported the home to the state, asserting it should not be allowed to carry out hospice orders to euthanize patients. The home was investigated and found innocent of any wrongdoing. The hospice, of course, was not investigated. This hospice protocol is being permitted and protected!
The hospice filled out my father’s death certificate and described the cause of death as “Alzheimer’s dementia” and the manner of death as “natural.” It also listed the approximate interval between onset and death as being six months. My father had Alzheimer’s for at least three years before his death. Also, my father undoubtedly collapsed due to a stroke caused by the use of Haldol and Seroquel. Maybe the stroke and being denied medical treatment caused his death. Or, was it morphine that killed him? I will never know. I only know Alzheimer’s dementia was not the culprit.
My mother’s death certificate, also filled out by the hospice, states that her cause of death was “Alzheimer’s disease and unspecified mood disorder” and the manner of death was “natural.” It also lists the approximate interval between onset and death as six months for both the Alzheimer’s and the alleged “mood disorder.” My mother was diagnosed with dementia (not Alzheimer’s) approximately 15 years before her death. She did not die from natural causes. Since when is being intentionally killed a natural way to die?
Both of my parents’ death certificates were clearly written to protect the hospice and create the impression that it had complied with the six-month guideline. Why are hospices being allowed to do this to people? Why is this legal? Why aren’t they being prosecuted?
An ongoing tragedy and a stark warning
I have heard family members throwing around the phrase “God’s will.” My parents’ hastened deaths were not God’s will! They were the hospice’s will! And not only did I lose both my parents within an 11-day period, but I have also lost my original family, because I can no longer look at my sisters in the same way. How they could be talked into doing such things to our parents is beyond my ability to comprehend.
It is a disgrace that Alzheimer’s/dementia patients are drugged into submission, denied appropriate medical treatment, kept in morphine-induced comas, and/or not given anything to drink and eat until they finally give up. It is wicked and inhumane behavior.
If I hadn’t witnessed this myself, I would never have believed this is how we treat our elderly dementia patients in this country. I am raising my voice because people need to be warned.
I hope it helps bring awareness to others before it’s too late for them. The guilt, the shock, and the heartache created by this hospice protocol are like no other. I suspect this profound grief is something I will experience for the rest of my life.