Trying to Keep Mother at Home

Taking care of elderly parents is difficult under the best of circumstances. And by "best," I mean various things: having sufficient funds to get necessary care and medications is of course a huge factor; another really major factor has to do with whether or not the elderly parent can or will accept care, and cooperate with doctors and caregivers. Sometimes, as with my mother, dementia is complicated by pre-existing personality problems. An elderly person who has been suspicious and controlling all her life is not going to suddenly become docile and easy to get along with, when she gets dementia. If she was critical and somewhat mean-spirited before she became demented... well, that probably isn't going to get any better.

A lot of older people in nursing homes become agitated and uncooperative, and engage in behavior that is disturbing to other patients (and staff); when this happens, they typically get some kind of anti-anxiety or anti-psychotic medication, to slow them down and calm them down. It more or less works... and it more or less turns them into zombies. There is a lot of debate about how to handle this problem; a recent NYT article provides an eye-opening discussion. Here's an excerpt:

Many doctors say misuse of the drugs is widespread. “These antipsychotics can be overused and abused,” said Dr. Johnny Matson, a professor of psychology at Louisiana State University. “And there’s a lot of abuse going on in a lot of these places.”

Dr. William D. Smucker, a member of the American Medical Directors Association, a group of health professionals who work in nursing homes, agreed. Though the group encourages doctors to conduct a thorough assessment and prescribe antipsychotics only as a last resort, he said, “Many physicians are absent without leave in the nursing home and don’t take an active role in the assessment of the patient.”

Some nursing homes are trying a different approach, so-called environmental intervention. The strategies include reducing boredom, providing intellectual and physical stimulation, exercise, calming music, bringing in pets for therapy and improving how the staff approaches and talks to dementia patients.

At the Margaret Teitz Nursing and Rehabilitation Center in Queens, social workers do life reviews of patients to understand their interests, lifestyle and former occupations.

“I had a patient who used to be in fashion,” said Nancy Goldwasser, the director of social services. “So we got her fabric samples. And she’d sit and look through the books, touch the fabric, and it would calm her.”

But such approaches are time consuming, they do not help all patients, they can be prohibitively expensive and they will be more difficult to provide as Alzheimer’s continues to increase.

“Our health care system isn’t set up to address the mental, emotional and behavioral problems of the elderly,” said Dr. Gary S. Moak, president of the American Association for Geriatric Psychiatry.

Nursing homes are short staffed, and insurers do not generally pay for the attentive medical care and hands-on psychosocial therapy that advocates recommend. It is much easier to use sedatives and antipsychotics, despite their side effects.

My mother, who I just recently got back into her house from the nursing home, did pretty well with 24-hour in-home caregivers, for a little while. Then, after just more than a week, she began "firing" the caregivers, and being really nasty to them. The care manager and I now have some difficult choices. Put her into a psychiatric facility, against her will, to see if there is some medication regimen that will calm her enough so she can stay in her own home? Or, for now, let her stay at home, mostly on her own, and see if she will take her medications and eat properly?

I am very much afraid that we will find that she is not going to be able to stay in her own home, because her dementia, on top of her pre-existing personality problems, make her so incredibly hard to deal with that no caregivers will stick around for the inevitable abuse and refusals to cooperate. If I had to choose, I would rather have her at home, and taking enough antipsychotics to slow her down some, than in a nursing home; but if she is in her own home, and refusing to take medication, then we (my mother and I) are in real trouble.