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.2 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 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 2009.4 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.
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:
- 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?
- 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?
- 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?
- 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?
- 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?
- 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?
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