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Posted September 15, 2006

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Elderly Behavior: Taking Action in Face of Mom's Mental Illness

Q. My mother lives in Indiana. I live in Oregon. Mom is 79 years old and has been chronically mentally ill for most of her life. She suffers from extreme paranoia and hallucinations. She also has a kind of dyskinesia pursuant to many years of taking anti-psychotics that she always called her "sleeping pills." She has been hospitalized for mental illness at least twice in the last 10 years.

She was on Risperdal until a couple of years ago, when she read a book about schizophrenia, at which time she took herself off her meds because she is convinced there is nothing wrong with her, and that everyone else is "insane" (her word).

My sister, who also lives in Indiana, has been her guardian since 1999 when mom was in a car accident and had a complete mental break (one of the hospitalizations I mentioned above). Mom signed the papers and cooperated with the guardianship at first. But since she took herself off Risperdal, she has become progressively more paranoid, completely uncooperative in her own care, and is in a blind, obsessive rage about the guardianship. No matter how much we have tried to explain how a guardianship works, she does not get it. She is convinced that my sister and I have manipulated all the doctors, lawyers, and judges into believing she is "insane."

At this point, mom is so paranoid she refuses any and all communication with us. She changed her phone number a few days ago, so we can't even check in with her to see if she needs groceries, prescriptions, etc.

We have sought advice/help from any number of sources, but the responses we have gotten always seem to be something to the effect of, "Yes, you certainly have a difficult situation here." But no one seems to be able to help us determine what to do.

My sister, as her personal guardian, has a responsibility to take care of mom, but we are both stymied at every turn because mom is so paranoid. She checkmates us every time we try to do anything to help her. For example, mom's doctor has said she needs surgery. Every time we get it set up, she cancels it. She also needs to get into a better living situation, but no matter what we do to try to facilitate a move, she refuses in the 11th hour.

As for the guardianship, it's easy to SAY a guardian is empowered to make decisions about medications, but in reality, it is almost impossible to make it happen if a person doesn't want to take them. Mom is extremely resistant to taking meds and checks every medication very carefully to make sure no one is trying to give her any kind of drug for mental illness. She is a very intelligent woman.

Additionally, most doctors completely refuse to work with a guardian under these circumstances. They won't even talk to my sister (the guardian) let alone work with her to try and manage my mother's mental illness.

At this point, we are at wit's end trying to figure out what to do to help our mother. Her living conditions are not acceptable. Her mental state continues to deteriorate, and we have been unable to find anywhere to turn for help. We need professional guidance. We need some kind of case management and we have not been able to find any person or agency that can/will offer it.

It seems that everything concerning the elderly is geared toward care of persons suffering from dementia. There don't seem to be any satisfactory answers for adult children who are caretakers of a chronically mentally ill parent. What are our options?

I am also concerned for my sister, as the guardian. How can we fulfill the order of the court to care for our mother when she won't let us? Neither my sister nor I feel that mom should be living alone in her house at this point. However, assisted living is pretty much out of the question because, without her meds, she would be asked to leave in fairly short order. We were able to get visiting nurses and caretakers to come into her home while she was on her meds, but since she refuses to take them now, her paranoia causes her to fire everyone we hire because she is convinced they are stealing from her or worse. So, she winds up alone, with no one to help her, and she is unable to care for herself, cook for herself, or even bathe herself. We are desperate.

Is there any advice you can give? Can you recommend some service or agency that can help? Any lead will be greatly appreciated.

J.C., Beaverton, OR

A. Increasingly families and social service agencies are facing situations such as yours, where older adults have long-standing psychiatric problems complicated by non-adherence to appropriate medication therapies. Here are a few things you and your sister might consider. 

First of all, if your mother is a danger to herself or others, you should contact the local Adult Protective Services (APS) office and request that an evaluation be done. For example, if her living conditions are so unsanitary that they are a public health threat, if she is unable to properly cook or refrigerate her food and therefore is at risk of poisoning herself, or if her suspicious rages are threatening the safety of people who visit her, it may be possible that she is a candidate for another psychiatric hospitalization. This may be done on an involuntary basis if her situation is serious enough. Once in the hospital, she might be persuaded by professionals to resume her medications and get other help that she badly needs.

If you have already contacted APS and they have not taken action on your mom’s behalf, it is important to find out why. Perhaps you need to document your observations more carefully, so that even if your mom appears to be functioning fine when someone visits, there is an accurate record of your concerns in her file.

Her local Area Agency on Aging may have training programs for persons who are guardians that would help your sister understand her rights even though your mom is resisting help, as well as the restrictions that medical, legal, or social service personnel face if your mom does not consent to an intervention. They should also have information regarding case management services that are available in your mom’s area. Unfortunately, sometimes there is nothing that can be legally done until an individual’s situation deteriorates to the point where there is a life-threatening crisis and their need for safety overrules their rights for autonomy.

The National Alliance for the Mentally Ill has chapters in Indiana and Oregon, and the NAMI home website (www.nami.org) has information about family training programs and on-line discussion groups where you and your sister might also get support for yourselves. It is very painful when you are in the position of being unable to help someone you love, and talking with and comparing notes and experiences with other people who have been in that situation can be a great help.

This answer is provided by Susan M. McCurry, Ph.D., Research Associate Professor at the University of Washington, School of Nursing, and a licensed clinical psychologist. She is a fellow in the Gerontological Society of America and an expert in the development of behavioral interventions for the treatment of mood and behavior disturbances in persons with dementia and family caregivers. Her publications include the recent book, “When A Family Member Has Dementia: Steps to Becoming a Resilient Caregiver” (Greenwood Press). She can be reached at smccurry@u.washington.edu.

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