I first noticed something different about my husband, Allen, when he turned 70. He was simply somewhere else, he wasn’t with us. He even lost interest in our favorite activities, camping and fishing. In 2009, he was diagnosed with Lewi Body dementia and Parkinson’s disease. I cared for him at home for a number of years. The day I realized I couldn’t do this anymore was one of the worst days of my life.
Since then, he’s been in and out of nursing homes. I’ve always visited him every day. One day in 2015, I noticed that Allen went from not being able to sleep to sleeping all the time. His eyes were glazed. I’d ask him a question, and he couldn’t answer me — something he could have done weeks earlier. I thought I was going to lose him.
Then I realized the nursing home staff were giving him something.
That something was two anti-psychotic medications. No one had asked my permission. Our daughter and I did some research, and the side effects were scary. Anti-psychotics are associated with a nearly doubled risk of death in older people with dementia. The articles told me the drugs were made to treat schizophrenia and psychiatric disorders, and that the Food and Drug Administration has not approved them for dementia.
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I believe the nursing home gave Allen the drugs to restrain him. He was always wandering around and sometimes hard to handle. And the nursing home was understaffed. Its staff worried that he might fall and break a hip. But he started falling frequently after he was put on the drugs, probably because they made him groggy.
When I asked the doctor to take him off the medication, she said I needed to speak to the psychiatrist. I never could get hold of him.
At other nursing homes, Allen was also given anti-psychotic drugs — again without my permission. At one of these homes, there were only two nurse’s aides for 17 men. That’s just not enough staff.
I struggled during this time. I didn’t have a clue about the drugs, or how nursing homes handled people with Allen’s illness. I felt incredibly alone and worried.
But I wasn’t alone. This is a national problem. A new report from Human Rights Watch shows that many nursing homes across the country are using these drugs to control the way residents behave, often without consent from the residents or their families.
The federal government pays most of the bills in these nursing homes, including Allen’s, through Medicaid and Medicare. Yet it isn’t enforcing regulations that prohibit the use of drugs as a chemical restraint.
But there is hope that things will change in Kansas. A bill has been introduced in the Kansas Legislature that would require informed consent to give nursing home residents psychotropic medicines. After my experiences, I support this bill. So should everyone else in Kansas.
It’s not just about Allen and myself. This bill will protect all of us as we grow older. For 31 years, Allen worked for the Santa Fe Railroad. He became a conductor for a train line from Kansas City to Arkansas City, Kan., and sometimes would be on a train for upwards of 24 hours. He liked his job and having grown up on a farm, he was used to hard work.
Allen deserves better.
A while back, I was grateful to be able to move him to a new nursing home. They have a doctor there every weekday. The staff asks me before giving him a new medication and listens if I think he should take less. They know how to handle Allen without drugging him. They redirect his attention with activities or take him for a walk.
I believe potentially dangerous drugs should not be give to anyone without the person’s, or his or her family’s, knowledge or willingness. And I’d like to see nursing homes hire more staff and train their aides better.
The people in these nursing homes need to be taken care of properly. As a country that’s supposed to be rich, we should take good care of people who have worked so hard to make it what it is.
Charlene Wagner is a retired hairstylist who lives in Johnson County.