Two years ago, my Father hit my Mother. It was the first and only time he’d done that in their 50+ years of marriage. Only he didn’t really do it. It was the Alzheimer’s that had taken up residence in his body since 2005.
All the books tell you that combative behavior is very common in people with Alzheimer’s and other forms of dementia. Still, it came as a shock to us. Dad’s doctor immediately put him on a mood medication that proved effective in the past and thankfully, it helped again.
As a caregiver, you know your loved one so well that you recognize changes in their mood or behavior. You stay on top of their medications and coordinate with their nurses routinely to keep your loved one on an even keel.
But that can easily change. Last year Dad got angry with me, pushed me and twisted my arm. After the initial shock and a personal meltdown, we knew what to do. Once again, hospice immediately stepped in and for a few days we tweaked both the dosage and time of day he took the medicine until we found that ‘happy cocktail’ where he was no longer angry, but he wasn’t sleeping the day away. It was like finding the perfect lullaby so your baby can nap and wake up feeling rested instead of cranky.
When you are forced to move your loved one to a facility, your role as a caregiver is far from over ~ it merely changes. You still must stay on top of their medications, gauge their moods, ask questions and make insurance decisions so they’ll get optimal care. Any time they change my Father’s medication, I get a call. Any time he falls, I get a call. Any time he has a skin tear, I get a call. And that’s the way I like it. Since I’m only able to visit my Dad once a week, I rely on the nursing home staff and on hospice to let me know how he’s doing.
A few weeks ago, I received a call that his doctor had lowered his mood medication dosage. That surprised me, but since he examines my Dad each week, I yielded to his expertise. Not long after that, I received another call that his dosage had been lowered even further. Little bells went off inside my head. I’m not a medical professional, but as my Father’s caregiver for 10 years, I knew this was a bad idea.
It wasn’t long before I got a follow up phone call informing me that Dad had gotten combative with the staff. No surprise there. I called his nurses, asking questions and leaving messages for the doctor. I made my way up the food chain and spoke with a director. I simply wanted to know ~ why was his dosage lowered?
And that’s when I learned something every caregiver needs to know.
The FDA requires nursing homes to automatically reduce the dosage of antipsychotic drugs. According to the Center for Medicare Advocacy:
Residents who use antipsychotic drugs receive gradual dose reductions, and behavioral interventions, unless clinically contraindicated, in an effort to discontinue these drugs[i]
What?! Why would Big Brother reach into my Father’s medication protocol and arbitrarily reduce his mood medication dosage?
I dug deeper and discovered this law was put into place to protect residents. There are nursing homes who dope up their residents on antipsychotic drugs, solely because they don’t want to deal with them. Tragically, this maltreatment has resulted in thousands of deaths.
This dangerous misuse of medications should absolutely be winnowed out and offenders punished. But what about those residents like my Father who have a justifiable prescription for antipsychotic meds? Of course he’s going to be angry, combative and miserable if his dosage is inadequate. His brain has been gradually dying for 16 years.
I felt helpless, like I’d handed a fragile infant over to a capable sitter who was forced by the law to throw the baby out with the bathwater.
We have direct contact with all of Dad’s nurses and administrators, but not the doctor. He is not at the facility all day, every day. He drops in and sees patients and then leaves. So I called Dad’s nurses and left an urgent message asking his doctor to increase his dosage back to where it was when he was first admitted in March. But would he do it?
I’ll be honest ~ this was the moment I could’ve easily been sidelined with anxiety, the handwringing, stomach-churning kind with a deluge of ‘what if’s?’ pounding my brain. This was my Father, not a faceless statistic on a government report submitted by a nursing home. This was my Dad.
Now, there are thousands of excellent medical professionals out there. But let’s be honest. There are also some who believe that the “MD” wrapped around their name entitles them to look down upon families and dismiss their input simply because they don’t have a degree. I prayed Dad’s doctor didn’t fall into the latter.
Think of it this way ~ If you or I were in pain, we could simply take some over-the-counter medicine. We choose the pain reliever, ingest the pill and don’t have to tell anyone. But people with Alzheimer’s can’t do that. Just like a feverish child who can’t self-medicate, they rely heavily on their caregivers to collaborate with doctors to find the best treatment plan.
I didn’t know if increasing my Father’s dosage was a simple thing or if there were more government hoops to jump through. Was a waiting period required first?
Thankfully, it wasn’t. The doctor agreed to my request and immediately increased my Dad’s dosage back to ‘pre-FDA tampering’ levels. Since the nursing home now had their own documentation of Dad’s combative behavior while on a lower dosage, his mood medication should not be altered by the FDA.
Dad’s anger dissipated and the combative behavior went away. And I learned a valuable lesson.
Before you place your loved one in a facility, ask the administration for a list of government rules they are required to follow, no matter how fine the print or long the list. You don’t know what you don’t know. Asking questions is the best way to learn everything that will impact your loved one and their quality of life.
As for Big Brother…While the intent of this FDA rule is to save lives and promote quality of life, clearly, the powers that be must return to the drawing board. Mandating that a drug’s dosage be reduced, simply because it is an antipsychotic drug, regardless of a patient’s medical history or success on that drug jeopardizes the health and wellbeing of people like my Father, who are already prescribed the right type and amount.
We must do better.