My Father-in-law on Risperdal — A Case Study Gets Personal

Steve McCrea
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Background

My wife Ginny’s dad was a well-loved college professor with a totally unique and unforgettable personality. He was lively, intelligent, impulsive, witty, challenging, persistent, intense, insightful, and usually hilarious. He read the New York Times, the Washington Post and other papers every day and was incredibly well-informed about international affairs and politics, especially as related to his specialty area of the former Soviet Union and its relations with China. He was also very dedicated to his family, and was not afraid of challenging the status quo; becoming (among other things) the coach of one of the first girls’ soccer teams in the US. He was an inveterate bike commuter back in the days before bike lanes, when few had the courage to dare rush hour traffic by bike. He was a lover of music and a passionate athlete, spending years and thousands of dollars of his own money establishing a varsity squash program at his school, and eventually being inducted into the College Squash Association Hall of Fame in 2003.

He was diagnosed with Alzheimer’s not long after his induction ceremony. He gradually lost his sense of direction and then his sense of time. By 2009, it was clear that his wife and daughter (Ginny’s sister), despite heroic efforts, were no longer able to safely care for him at home. He was admitted to a nursing home in August 2009.

Unbeknownst to Ginny, he was put on the antipsychotic drug Risperdal not long into his stay.

It became clear to everyone that his Alzheimer’s was advancing quickly and that his days were very limited. Ginny was already planning a trip to visit him (we live on opposite coasts), but she moved her visit up to an earlier time, because she felt almost sure it would be the last time she saw him.

Ginny was very surprised and disturbed by what she found when she first saw her dad in the nursing home but, being who she is, she wasn’t willing to stand around and let bad things happen to him. She took careful notes of her experiences, which I will share below. By the end, the reader will be left with no doubt as to the impact Risperdal had on her dad’s life, and the impact she had by getting him off of it.

Risperdal is called an “atypical antipsychotic.” It is increasingly used in nursing homes for “agitation,” especially on those suffering from some form of dementia even when no hallucinations or delusions are observed.  Risperdal has quite a long list of side effects including heart problems, metabolic difficulties, diabetes, involuntary movements, agitation (ironically, it occurs in up to 10% of users), flat affect, and sedation (up to 63%).1 Risperdal often causes metabolic problems, including high blood sugar and diabetes. Risperdal also has earned a “black box” warning that its use in those with Alzheimer’s increases the risk of an earlier death. Yet its use in Alzheimer’s patients in nursing homes is extremely common.3

I used to work as an advocate in nursing homes and was quite aware of this phenomenon. I’d seen lots of “overmedicated” folks who were so impaired by drug prescriptions that they were unable to speak with, me or could not walk through a doorway without running into it, or whose tongues were involuntarily sticking repeatedly in and out in the most grotesque manner, as a result of antipsychotic prescriptions. But the issue became very real for me when my own father-in-law was “treated” in a nursing home.

The Diary

The following are Ginny’s notes from her visit in October 2009, transcribed as she wrote them at the time, with no foreknowledge of what was to come. [Editorial comments by me are enclosed in square brackets.]

Friday, October 10, 2009 (Day 1)

This was my first day visiting [Dad] since his two falls in September 2009.He appeared catatonic – basically, non-responsive. Didn’t appear to be able to focus his eyes. His eyes were rapidly moving in all directions for the majority of the visit. He didn’t seem to know where he was – he was disoriented. He tried to talk, but couldn’t verbalize at all. His hands were trembling. He was laying in bed. He gripped the bedrails of his bed. He could not feed himself at all. He was moving his head quickly back and forth, along with his eyes.

At this point, Ginny called me from the East Coast and expressed her grave concern for her father’s behavior and condition. I asked her what medications he was taking, and she said “Risperdal” (trade name for risperidone). I suggested that this might be responsible for his inertia and other concerning behavior.

She and her sister looked up the side effects of Risperdal and noted a large overlap with her father’s symptoms, including uncontrolled movements, falls, and disorientation.5 Her sister also noted that there was a black box warning on Risperdal specific to Alzheimer’s patients, because it had been found in studies to lead to an earlier death. It is also worth noting that Risperdal, like all the newer “atypical” antipsychotic drugs, can have serious metabolic effects, including diabetes,6 and that her dad had already been diagnosed with diabetes years before.

After an emotionally difficult conversation between the two sisters and their mom, they agreed that their mom (who had power of attorney) would ask the nursing home to discontinue the Risperdal, AMA if need be.  Her mom tried to contact her dad’s neurologist who had prescribed the Risperdal.  She was unable to reach him and decided to tell the facility to discontinue Risperdal immediately.

Ginny continued to record her observations over the next four days as the Risperdal left his system.

Saturday, October 3, 2009 (Day 2)

Risperdal discontinued Saturday AM, as it didn’t seem to help with anxiety [which was the reason given to her mom for its use.] In fact, it could be the main factor leading to inertness, non-movement of legs, trembling of hands and general lethargy and apathy and disorientation. He had almost 102 degree fever on Thursday 10/1, which my mom discovered and the staff at the rehab center were not aware of. [It is noteworthy that in the patient handout for Risperdal, users are admonished to “stop taking Risperidone and call your doctor at once” if a fever develops. 7]

By Saturday, temperature down to normal. My dad said “What?” the first words I had heard him speak and when he did talk, it was one word at a time. He didn’t seem to be able to complete sentences. His voice was extremely hoarse. His hands were still trembling but much less so. He was able to focus more on me and my mom and his eyes were wandering less.

On this visit, he was in the dining room and we fed him there. He made some attempt to feed himself but had difficulty with his hand-eye coordination. He had gone to the day’s activity – gospel singing – and the staff told us that he was tapping his feet and snapping his fingers along with the movement.

Sunday , October 4 (Day 3)

Dad talking more – enjoys being read to – responds to interwoven stories about our family. He says he can remember the stories I am talking about.  He takes a more active participation in feeding himself with assistance.

All along, his difficulties with focusing, except for the days on Risperdal, seem to be due to vision issues – when he was feeding himself from his dinner plate, he would use his spoon or fork to try to get the water cup with his utensils. He kept misjudging where his food was – suggesting the possibility to my mom and myself that he needed a new glasses prescription.

He was in the activity room on this day. He wanted to know who people were in the room and what the TV was, etc. He was able to hold a conversation. He moved his right foot in his special chair and I moved it back to help him be balanced and he repeated this action, suggesting he was controlling

his foot. He told me: “I’m lazy” over and over again. I told him “Yes, you are lazy. You need to move your legs, knees, ankles and feet.”

He talked to his granddaughter on the phone, and thought she was his other daughter, and eventually said, “That’s enough of this, goodbye.”

He told me that I was looking better.

Keep in mind that just two days ago, this man was unable to speak or intentionally move his body, and was gripping the rails of his bed and rolling his head and eyes uncontrollably from side to side.

On Monday morning, Ginny’s mother got a call from the neurologist who had prescribed the Risperdal to her dad. He was infuriated that she had stopped the nursing home from administering the drug, and attempted to pressure and intimidate her into putting him back on again, despite the obvious improvements that had been made since he’d stopped. When Ginny’s mother told her that the neurologist had called about the Risperdal, Ginny told her mom that: “The neurologist is really lucky that I didn’t answer that call, for I wouldn’t have held back. He does not have my Dad’s best interest at heart.”

The family held together and maintained their plan despite the neurologist’s intense disagreement.

Monday, October 5 (Day 4)

Dad in the dining room. He was able to feed himself more easily, with both of his right and left hands. His finger control, especially in the right hand, was vastly improved. He enjoyed my reading the book. He interjected comments to me and my mom. He corrected my grammar and told me to say, “Would you please?” He also told me that I looked lovely.

He asked me and my mom what the name of another resident was. We found out and told him. He wanted to know who the staff were. At one point, he said, “Where am I?”

The [physical] therapist told us he had stood in his special box [for practicing balance] with assistance. All of the staff had told both me and my mom how much he was verbalizing. Dr. Hillien said he seemed relaxed, especially while standing.

Dad told Mom “he was down,” meaning feeling unhappy. Dad told Mom, “I am angry at you for not coming sooner.”

Tuesday, October 6 (Day 5)

We learned later, past dinner, Dad [was] singing in his bedroom after having been given a bath.  Dad’s voice at this time was sounding fairly good – not much hoarseness. We fed him yogurt and later brushed his teeth. He didn’t really want the book read to him. Mom, my sister and I were all there. He was oriented to all of us. He said he understood that I was Ginny and understood that I was going back to the West Coast the next day, but would check in with him (by phone) regularly. He also said “I want to go to the bathroom” after saying that he’s not being active. I said, “Well, you need to move your legs off the bed.” He moved his right leg significantly and lifted his left knee. I talked to the doctor about it. She said he needed to be able to support himself some.

My mom asked him about going to Starbucks. He seemed interested in doing that – it’s 5 blocks from the Rehab and I’m hoping the staff will support that and help him in reach both those goals.

He asked me “where is my room?”

He told my sister that “Your outfit is not legal.”

The doctor or physical therapist said my Dad stood upright in the box today while leaning over to the grab bars.

I noticed he gritted his teeth and grabbed hard onto my hands.  I asked him, “Why?” He told me because he wanted to get up and go to the bathroom. I asked him not to grip my hands so hard as it was hurting my hand. I showed him that he was unintentionally squeezing my hand together. He looked at my hand and softened up his grip.

I did notice, overall, that he seemed in better spirits when he was outside of his room.


Analysis

On Saturday, Ginny’s dad was unable to move or speak despite desperate efforts; head and eyes rolling from side to side, hands shaking and gripping the sides of his bed in obvious discomfort. Four days after the Risperdal was stopped, he was singing, remembering both who Ginny was and how long she was staying, able to stand with assistance and attempting to head to the bathroom. He was able to help feed himself, and to converse freely, to the point of correcting his daughter’s grammar.

Despite his obvious deterioration and discomfort upon Ginny’s arrival, none of the doctors or nursing home staff expressed any concern over his condition. Despite his dramatic improvement, the doctor expressed outrage that his patient’s wife and power-of-attorney made an informed decision to discontinue a drug that was obviously having extremely detrimental effects on her husband.

Some obvious questions arise:

  1. Why was he put on Risperdal for “anxiety,” when it is an antipsychotic used to reduce hallucinations and control erratic behavior? Was that the real reason, or was that just what Ginny’s mother was told to keep her from questioning the doctor’s plan?
  2. Why wasn’t Ginny’s mother, who had power-of-attorney and was therefore responsible for the informed decision-making process, told of the possible side effects, including the black-box warning of possible early death, as well as the involuntary movements and inertia that were later so clearly observed? Why did she have to rely on her son-in-law across the country and her daughters doing internet research to discover what the doctor already should have warned her to watch out for?
  3. Were the staff informed of what side effects to look for? Whether or not they were; how were they able to miss the severe and dramatic adverse effects, including falls, immobility, loss of the ability to speak, his deteriorating physical condition, and his physical and emotional distress, which he so clearly displayed? Or did they notice these signs and remain unconcerned, as this was “business as usual” in their facility?
  4. Why, despite the obvious physiological, psychological, and social improvements he made in such a short time, was the neurologist so incensed and so insistent that Ginny’s dad go back on Risperdal?
  5. What if any efforts were made to try and help him manage his moments of emotional difficulty (such as when he grabbed Ginny’s hands too hard) when a couple moments of respectful dialogue might easily have resolved the situation?
  6. Was Risperdal in this case really a medical treatment at all, or was it simply a method for making one of the residents more convenient for the staff to deal with by inducing inertia and stopping his ability to move around and verbally communicate?

While this is only one situation with one resident and one family it seems, to me, to illustrate what I have observed to be a common practice of using Risperdal and other antipsychotics essentially as chemical straitjackets to immobilize and disengage challenging or irritating residents.  The degree of dishonesty displayed by the neurologist, and the level of disconnection and insensitivity of the staff to his obvious suffering was deeply disturbing, but I don’t believe these are rare phenomena in nursing homes and rehab facilities across the nation. I have always felt it was wrong, but the distress and confusion it caused my wife and family members really brought home in a very personal way how horribly destructive and emotionally devastating this practice can be.

Ginny’s dad was fortunate to have an educated family with the willingness and skills to do their own research, and with the courage to directly challenge the doctor’s decision despite the predictably hostile response from the prescriber.

How many elderly dads and moms are out there, heads and eyes rolling from side to side, desperately trying to but unable to speak, who are not so fortunate?

How many are forced to live in this state for months or years, while the staff and doctors turn a blind eye or attribute their difficulties to dementia, rather than considering the possibility that these powerful drugs are unnecessarily destroying the fragile quality of their remaining time on this earth?

* * * * *

References:

1 http://www.drugs.com/sfx/risperidone-side-effects.html

2http://www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforPatientsandProviders/ucm152291.htm

3 http://www.ncbi.nlm.nih.gov/pubmed/23299113

4 http://www.medpagetoday.com/Neurology/GeneralNeurology/49529

5 http://www.rxlist.com/risperdal-drug/side-effects-interactions.htm

6 Ibid

7 http://www.rxlist.com/risperdal-side-effects-drug-center.htm

34 COMMENTS

  1. I am so very happy for you and your wife’s family that you were able to get your father-in-law off such a dangerous drug as Risperadal which has a black box warning for those afflicted with Alzheimers Disease. I am ecstatic that your wife’s family was able to stand their ground against a dishonest and unethical neurologist. It is beyond decent morality that they give this toxic drug to these patients in nursing homes just for agitation; so these people will not be a bother to them. I, of course, am much younger; but have some time on the drug; Risperadal. I really forgot why I was prescribed it in the first place. I think the illegitimate psychiatrist thought I was “bi-polar” or some such nonsense My dosage was upped several times and in a few years; after I lost my sister to cancer; I begin to really have psychotic thoughts. I believed that before I even went to a job interview I was pre-selected for rejection; because the interviewer already knew I had a “mental illness” and would not hire me. Later, into taking the toxic drug; I developed hallucinations which I never really had before; except several times while on lithium as I walked down Main Street in the town I lived at the time. One of the other things it caused me was to affect me to write so small and tiny; that I had to have my mother sign my checks for me at the stores and any writing I did was so tiny as to be unintelligible. This is horrific for someone like me who has been writing poetry, journaling, and other writing since the first and second grades. I am such a natural writer that I even “pray to God” through writing. It is my most natural way of communicating and to me it is as natural and autonomic as breathing. Earlier this year; a very unethical psychiatrist tried to put me back on risperidal because she was scared of my getting a relapse. I had told her that I wanted to be totally off all psychiatric drugs for good and I mean for good! I got angry about it and told my therapist I would not see her again. Actually, I refuse to ever go back to that “mental illness clinic” again. I am afraid I might act very un-Christian if I saw her again and I really don’t want to do that. Risperadal is a tragedy and dangerous for everyone and in any age group; especially your father-in-law. As for me; how dare anyone take away from my natural way of communicating and viewing the world. I am involved in nature and am pursuing other artistic avenues; because I have a natural, gentle artistic spirit; but my home is in the realm of words and writing and all that I do and am emerges from that. How dare any evil psychiatrist or any alleged medical doctor to steal that from me. In my opinion; it is another form of rape and even more insidious; because we really have no recourse for it at this time. Thank you.

  2. Steve,
    Is this your first article? If so good job! Glad your father was able to get off that drug and regain some well-being and ability to relate!

    It brings a tear to my eye to read about the neurologist who was outwitted and overruled by a layperson-family member. This needs to happen more.

    My father is still on a cocktail of 4 neuroleptics that he has been on for the last 23 years. It is a horrible and tragic situation that has turned him into a creature from Night of the Living Dead.

    A few years ago I visited my Dad’s psychiatrist with him to ask about my dad’s treatment but was unfortunately unable to effect any change. My dad would not consider the idea of reducing meds and the psychiatrist was against it. I wasn’t rude, but the disdain I felt internally for that disgusting psychiatrist was so strong that I can’t write about it here and keep it PG. Nothing has changed since then; maybe one day my dad will wake up.

  3. I am so glad for your happy ending. I have enjoyed reading your comments and now am enjoying reading your first (?) post.

    I think you are right on about antipsychotics frequently being used to control even ‘mild’ behaviour difficulties in people with dementia. I had a similar experience with antipsychotic medications being offered to a parent (They had no idea how terrifying that sounded to me!).

    I have heard of some efforts for change in this area now – apparently there is some ‘rating’ system of care homes where low or no use of antipsychotic medication gives a home a higher rating (I am sorry i cant remember the details now) Also there is some move towards a type of ‘gentle persuasion’ training which is supposed to teach staff better to understand how a person with dementia might be thinking (e.g. Realizing that it is normal for someone to thrash out if ‘strangers’ are ripping his clothes off, which is what it would feel like to the person with dementia when ‘unknown’ nurses try to bathe him…so they teach them to do alternate things (sponge baths) instead rather than try to force people into doing things they don’t want to do.

  4. We have really pathetic human rights in America. Thats where big pharma and the state got the ability to wipe out a persons personality and behavior using these stock piled chemical weapons. These drugs are mind/memory/impulse erasers, nothing more. They absolutely should not be legal to use on any person who does not specifically request them. It should be illegal to offer or suggest these drugs, they are that dangerous and abuseable.

    http://www.obamasweapon.com/

  5. You wrote “How many elderly dads and moms are out there, heads and eyes rolling from side to side, desperately trying to but unable to speak, who are not so fortunate?”

    I will modify it to “How many schizophrenics are out there, heads and eyes rolling from side to side, desperately trying to but unable to speak, who are not so fortunate?”

    I was like that ” heads and eyes rolling from side to side, desperately trying to but unable to speak,” at the age of 19. This behaviour helped convince my family I was schizophrenic, so I became schizophrenic.

    “First they came for” back story.
    {When Pastor Niemöller was put in a concentration camp we wrote the year 1937; when the concentration camp was opened we wrote the year 1933, and the people who were put in the camps then were Communists. Who cared about them? We knew it, it was printed in the newspapers. Who raised their voice, maybe the Confessing Church? We thought: Communists, those opponents of religion, those enemies of Christians – “should I be my brother’s keeper?” Then they got rid of the sick, the so-called incurables. – I remember a conversation I had with a person who claimed to be a Christian. He said: Perhaps it’s right, these incurably sick people just cost the state money, they are just a burden to themselves and to others. Isn’t it best for all concerned if they are taken out of the middle [of society]?}

  6. “How many elderly dads and moms are out there, heads and eyes rolling from side to side, desperately trying to but unable to speak, who are not so fortunate?”

    Let’s not forget that these drugs and even more commonly used in children for truly the same purpose. Such “side effects” are not simply a quality-of-life issue near the end of their days, but rather the sign of permanent brain damage that will complicate if not completely ruin the rest of their lives.

  7. What you described concerning your father-in-law’s being drugged is not an isolated incident. As a chaplain working in one of the best retirement/nursing homes in the state I live in, I had the opportunity to watch this done to numerous residents.

    If you don’t comply immediately with commands given you, if your are outspoken or complain about your care you receive, if you are loud and cantankerous you will be drugged under some pretext that has nothing to do with your situation. The nurses decide who is going to get zapped, at the recommendation of the aides working the floor, and when the medical director comes in for that week they have the list ready for him to sign off on. Let the drugging begin!

    The next time you see these residents who were once vibrant if sometimes aggravating for staff, you will find zombies who are locked in Gerry-chairs and they will be drooling on themselves. It’s a crime. Older people are being drugged to force compliance. And just as you described about how the doctor was furious with your mother-in-law for making the decision in the best interests of her husband, you will see the same behavior on the part of nursing home staff and doctors all across the country. Unfortunately, there are too many older people who have no one who will speak up for their welfare, either because they have no family or the family that they do have really don’t care about what happens to them.

  8. I agree, excellent first article, Steve. And I’m glad your family stood up against the system and was able to so clearly point out the seemingly inhumane flaws of what’s going on in so called care facilities today.

    In my opinion it’s shameful the elderly are being put on antipsychotics. And I believe it’s downright criminal children are being forced to take this class of drugs. But that’s because I know how sick the antipsychotics can make a healthy person. Within two weeks of being put on a child’s dose of Risperdal, at the age of 36, I suffered my first ever psychotic-like reaction, just when the drug was to “kick in.”

    The antipsychotics are not “wonder drugs,” they are a mind, body, and soul damaging class of drugs. And given the massive governmental drugging of children with the neuroleptics, it seems quite clear to me we obviously have the wrong people in charge of our government at this point in time. The antipsychotics are torture drugs, likely for almost all, if not all, put on them – irregardless of the so called diagnosis. It’s shocking to me that our society – particularly the medical community – cannot seem to awaken to this reality. I hope your father in law contines to improve.

  9. What a wonderful example of taking control of the health care of our own.

    This is where I’m flagged, and what seems so irrational to me, and epidemic:

    “Despite his dramatic improvement, the doctor expressed outrage that his patient’s wife and power-of-attorney made an informed decision to discontinue a drug that was obviously having extremely detrimental effects on her husband.”

    That ‘outrage’ is a symptom of trouble. Things will change when the well-being of a client/patient/facility resident takes priority over a dr’s ego and completely irrational need for control over others.

    • I also wanted to comment about your father-in-law singing. I find there to be a correlation between music and well-being. Music is uplifting, which is what people need more than anything, to feel better. It opens our hearts and nourishes our emotional body and spirit.

      I’m the music director and accompanist for a band which plays at an assisted living facility, many of the residents have dementia from various sources. Still, they always remember the music…

      https://www.youtube.com/watch?v=khwFWx75m94

  10. Thank you so much for this story! My father was just admitted to a behavioral medical center for “evaluation” because he has been combative with some of the staff at his assisted living facility. (He only gets upset when they try to get him to shower). The facility got him admitted to this behavioral medical center on a 5150. I visited him last night (the first day he was there) and he was happy and “normal”. He spoke well, wasn’t unnaturally confused (he has dementia-he’s 83 yrs. old). I spoke with the psychiatrist who is treating him this afternoon, and he told me he has put my dad on Risperdal, and he was doing well. Once I googled Risperdal, I got upset by what I read. My father has Type II diabetes and he’s on meds for high blood pressure!! Plus he has dementia! When I got to the center tonight to visit my dad, I spoke with the nurse to find out (again) what antipsychotic drug my dad is on. Confirming what I had heard, Risperdal. I told the nurse he shouldn’t be on that because he has diabetes and high blood pressure. She said she would let the doctor know my feelings. When I saw my dad, he was lying in bed, he couldn’t say words because they didn’t come to his head; he was confused-saying he hoped my mother wasn’t mad at him (my mother has been dead for 22 years, and before he took this drug, he knew this!). After reading your article, I’m definitely going to make sure he gets off this drug!! I’m so mad at this “doctor”!!
    Thank you, again, for sharing your story.