Drug Restraints and the Haldol Shuffle
Adult children just want their parent with dementia to be okay. Most do not have a clue on psychotropic (mind altering) medications or how they work. Families rely on professionals to recommend doses and medications for their senior parents. If a professional doctor or memory care community says that our mom or dad needs these medications, we tend to accept their wisdom. We are programed to not question authority. Yet when a parent is sedated in a drugged stupor over an extended period of time, more adult children are starting to ask why. At this point it can be too late for a senior with dementia.
Psychotropic medications can have a lasting affect on a senior with dementia.
Seniors may never be able to return to their baseline, before taking psychotropic drugs. My mother-in-law was given Haldol and now does the Haldol shuffle. It is a continuous stand up, walk, sit down and then it starts all over again. It is so sad to watch and they can’t stop. A professional told me it’s like their skin is crawling and they have to keep moving to make the feeling go away.
When we recently brought my mother-in-law her favorite Greek food for lunch, she sat down in front of her favorite foods at the table and then immediately stood back up and started the Haldol shuffle again. She had no desire to eat her favorite foods.
It has taken four months for the family to get her off the Haldol. My sister-in-law had to physically take my mother-in-law to her primary care physician and demand for the Haldol to be discontinued last week. The doctor was shocked my mother-in-law had been on Haldol for such a long period of time, with no recorded outbursts requiring such a strong medication.
So what happened?
My father-in-law, Bill, and mother-in-law, Amy, refused to move from their home of 56 years. Bill had been Amy’s caregiver for the last four years because she had dementia. When Bill had a sudden heart attack and went to the hospital, Amy was in jeopardy in the family home. The local children rallied around the dad in the hospital. For all intensive purposes, Amy was left alone for three days and three nights. My husband and I live 1000 miles away and we hired a geriatric care nurse. Amy was having delusions, not recognizing her own children, making unsafe choices, refusing to take her medications and eloped (she walked away and the police brought her home).
No community would accept her without medications
No assisted living would take her, because she had eloped. A memory care community came to assess whether they would accept Amy and said they would not take her unless she was medicated. The family understood drugs were a requirement at this point. My sister-in-law called Amy’s doctor’s office and explained Amy symptoms of delusions and etc., they did not want her in the clinic. Are you kidding me?!!? Amy’s doctor’s nurse said to take her to urgent care. But according to urgent care she was not bad enough to be admitted to the hospital. They sent her home with five pills of Adavan. Now what? Medications were required live in the memory care community. What could we do? She was not safe at home by herself and she didn’t want her adult children (she no longer recognized) to be with her. Finally a geriatric nurse provoked Amy to hit her. Then the police came and Amy was taken to the hospital by ambulance. There was no room in the psych ward so she was drug restrained in the emergency room for three days and two nights.
So the psychotropic nightmare began
The hospital said strong medication was necessary and started the Haldol. She was in the hospital for three weeks. Both memory care communities said the medications were necessary for Amy too. The family stupidly believed the professionals. Amy’s HMO had poor communication between the doctor, the hospital, the memory care communities and the home health professionals that saw Amy in person.
The first memory care community recommended making no drug changes for one or two months. When my husband and I flew to Seattle and saw Amy’s level of sedation, I said, “No way,” and fought to have the Haldol reduced by half. After the family figured out that the memory care community had no intention of supporting the reduction of medications, we moved Amy.
The second memory care community promised to reduce the psychotropic drugs and get her off the Haldol. Within two weeks they reduced the Haldol by half. Yet Amy was still in a drugged stupor. She was on a mix of AM and PM psychotropic drugs. This secure memory care community had a staffing ratio of one staff to ten residents.
We have since learned that drug restraints in memory care are common, particularly if they are short staffed.
I wrote this article to warn others adult children to demand reductions in psychotropic medications immediately. I am so sick of professionals saying to wait a month or more to see what happens with the medications. Then it’s too late. Amy went from fully toileting herself to incontinent. She went from eloping (walking away and the police brought her back) to barely walking. She went from smiling and talking to having a blank look on her face and staring into space.
We want to find Amy’s baseline again. She will never be at the same level of cognition from four months ago. There are moments and sentences were her personality returns. It is so sad to see her in this reduced state.
I am not saying that I am anti-drugs, but a Power of Attorney (POA) needs to be informed of the consequences of psychotropic medications. My own mother with dementia benefited from psychotropic drugs when she became very anxious and delusional in the later stages of her dementia. The price she paid for taking those psychotropic medications was permanently losing the ability to walk. I wish I had known then what I know now. Now my mother-in-law can barely walk…
Any hope? Have you had a similar experience with your parent? What happened? Have you witnessed drug restraints in memory care communities or hospitals? How can we stop it? How can a family find a good memory care that does not require drug restraints? What are the proper questions to ask?
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Diane has worked in senior housing for 17 years and is the regional marketing director for two debt-free Continuing Care Retirement Communities in Southern CA (Freedom Village in Lake Forest and The Village in Hemet). Her first book “Senior Housing Marketing – How to Increase Your Occupancy and Stay Full,” is being utilized by senior housing professionals across the country.
For weekly tips and advice go to www.Tips2Seniors.com and learn more from author and senior housing expert Diane Twohy Masson.
My theory of 10 years is now officially broken. I believed that if you had a mean parent they turned nice with dementia and if you had a nice parent they would turn mean with dementia. My random sample was everyone that I have ever spoken to about this theory.
Well, the tables have turned and my mom has turned mean again. Years ago, the ugly side of my mom was only exposed behind closed doors. The mental abuse for years took a tool on all my siblings and I. In fact, when they each turned 18, all of them moved to other states. I stayed to protect my dad. I figured if she took half her wrath out on me, he would only be subjected to it 50 percent of the time.
In college, psychology classes opened my eyes to mental illness and depression. After my mean mom did not attend my graduation or marriage, I was done. A wonderful counselor taught me how to deal with it. When I spoke to my mom and she was mean, I would say, “I am sorry that this conversation is not going the way I hoped, I have to go now, bye.” After I did this three times, my mom’s treatment of me turned around. She has treated me well for 28 years.
Now, she is in the late stages of vascular dementia. I got a call two days ago saying she is yelling and swearing at the staff. Oh boy, my nice mom is gone. Say hello, to sundowners syndrome and her living in the past of about 30 years ago. Yesterday, I went to spend some quality time with her. The mean look was on her face. My mom harshly said, “Where have you been? You have a lot of gaul showing up now. Why haven’t you come to see me? Everyone is stealing all my things. The neighbors are selling off all my clothes. You are just showing me defiance. I am hungry, no one has fed me in days.” Then she pointed to one of the staff and said, “See, she is crying.” (No staff was crying.)
Little Diane, felt she was back in high school again. I kept my head and tried to talk her off the ledge (so to speak). She just continued ranting and repeating what she already had said. She was visible agitated. I handed her the banana I had brought and she relaxed by 50%. Every time she repeated that she was hungry, I invited her to eat the banana. She said, “I am not hungry, I will save it for later.” My husband and I continued to talk to her in a calm and reassuring way and an invisible sundowners switch finally turned her back to my nice mom.
About a half hour later, I explained to her that she had memory loss. I explained how I was helping her by having a doctor (podiatrist) trim her toenails this week and she screamed, “Don’t touch me, don’t cut my nails” at the top of her lungs. She said, “I did? Well one doctor hurt me a long time ago.” I told her about another doctor who came to do an eye exam and now she has new glasses and can read again. When she said that she could not understand the staff, I said, “Yes, your hearing is bad and we have an audiologist scheduled to come in and maybe get you a hearing aid.” She loved the explanations, enjoyed me being there, holding her hand and feeling calmness.
Eventually, I said, “Mother I heard that you were yelling and swearing at the staff this week.” She said, “I did? I can’t remember. I didn’t mean to.” Then I said, “When I came in today, you were mean to me and yelled at me.” My mom said, “I am sorry, I didn’t mean to, I don’t remember.” Well, all was forgiven and I was so glad that I did not walk out earlier that day by reliving the harsh criticism and mental abuse of the past.
If your parent has turned mean, just remember it is the monster disease of dementia, sundowners syndrome or Alzheimer’s. (I know it’s easier said that done.) As my mom sundowners continues to progress, I may have to hold onto this apology forever. She may not have the brain cells left in vascular dementia to be cognitive enough to apologize.
Her psychiatrist says the sundowners has progressed to the point of needing medications to help her. I am very protective of my mom and don’t want to over medicate her, but my mom has been in her own daily mental torture for about three weeks. My goal is to keep her comfortable and pain free. If the medications can give her peace, I am now all for them.
Please share your successes, failures or comment below to join the conversation and interact with other senior living professionals on what is currently being effective to increase occupancy on a nationwide basis.
Diane Twohy Masson is the author of “Senior Housing Marketing – How to Increase Your Occupancy and Stay Full,” available at Amazon.com with a 5-star rating. The book is required reading at George Mason University as a part of its marketing curriculum. Within this book, the author developed a sales & marketing method with 12 keys to help senior living providers increase their occupancy. Masson developed this expertise as a marketing consultant, sought-after blogger for senior housing and a regional marketing director of continuing care retirement communities in several markets. She has also been a corporate director of sales and a mystery shopper for independent living, assisted living, memory care and skilled care nursing communities in multiple states. Most recently Masson was recruited to consult for two debt-free Continuing Care Retirement Communities in Southern California – Freedom Village in Lake Forest and The Village in Hemet, California. Interestingly, this career started when she was looking for a place for her own mom and helped her loved one transition through three levels of care.
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As a daughter with a mom in skilled nursing care, the PBS documentary entitled “Life and Death in Assisted Living” really upset me. My mom has vascular dementia and I have been her advocate for the last 7 years in assisted living. Those of you who follow my blog know that I moved my mom 1000 miles into a skilled nursing care near me – about 10 weeks ago. This transition happened because I was 100% in tune with my mom’s needs.
We all know someone who had a horror story during a hospital stay. Last week one of my colleagues was shocked to walk in and find her dad in soft restraints after heart surgery. He was 82 and not coming out of the anesthesia well. The nurse said that she did not have enough staff to help him, so she had to use soft arm restraints. My colleague asked if they could please remove the restraints. She and her mom each took one arm of her dad and literally held him thrashing around all night with no sleep.
Every senior or human being needs an advocate to make sure that the care they are paying thousands of dollar per month in any level of care is being provided. Trying to be a good advocate for my mom and living two states away – just about killed me. You have to have eyes on your loved one or pay someone to come in and be your eyes – particularly when they have dementia.
When a senior has dementia, like my mom, they get to the point where they cannot communicate all their needs, pains or desires to either caregivers or family members. There needs to be an advocate who truly knows that person and can look for and understand his or her unspoken needs on a regular basis.
If my colleague had not shown up to be an advocate for her dad, he would have been in soft restraints all night. If I had not flown in every few months to see my mom with my own eyes, areas of concern would not have been addressed. My mom had good care in assisted living with a caring staff, but she is my mom and I know her best.
It always makes me sad when a future senior resident considering senior housing has no family or only distant relatives. They may ask a lawyer or a niece in Canada to become their advocate or power of attorney. Will this remote person advocate properly on his or her behalf – if the senior can no longer communicate verbally?
There are great senior housing options available with loving caring staff, but it is always wise to have an advocate that knows your unspoken needs when you can no longer speak on your own behalf.
Tip: Future residents and their family members need to do their homework as they explore all senior housing options including assisted living. Always ask what the longevity of staff is at each retirement community, assisted living, memory care or skilled care nursing that you are considering for yourself or a loved one. Staff turnover is an indicator of an underlying management or ownership problem in all levels of senior care. Look for communities with longevity of staff.
Diane Twohy Masson is the best-selling author of “Senior Housing Marketing – How to Increase Your Occupancy and Stay Full,” available at Amazon.com with a 5-star rating. The book is required reading at George Mason University as a part of its marketing curriculum. Within this book, the author developed a sales & marketing method with 12 keys to help senior living providers increase their occupancy. Masson developed this expertise as a marketing consultant, sought-after blogger for senior housing and a regional marketing director of continuing care retirement communities in several markets. She has also been a corporate director of sales and a mystery shopper for independent living, assisted living, memory care and skilled care nursing communities in multiple states. Most recently Masson was recruited to consult for two debt-free Continuing Care Retirement Communities in Southern California – Freedom Village in Lake Forest and The Village in Hemet, California. Interestingly, this career started when she was looking for a place for her own mom and helped her loved one transition through three levels of care.