Caregiving : Nursing Home, Feeling Guilty, Preventing Mistreatment

by National Institute on Aging

(Page 6 of 7)

What happens if my mother gets too sick to stay at home? She is terrified of ending up in an institution and has asked me to promise that I won't "put her" in a nursing home. It is hard for me to figure out what to say.

If you are over 40, chances are you've had a similar conversation with someone you love. It might come up if you see a segment about nursing homes while watching the evening news. "Promise you'll never send me to a nursing home," your mother says. This request usually reflects what most of us want: to stay in our own homes, to maintain independence, to turn to family and friends for help.

Sometimes, however, parents really do want their adult children to make a promise. Think carefully before doing so. According to the Centers for Medicare and Medicaid Services, "Quality of care means doing the right thing, at the right time, in the right way, for the right person, and having the best possible results." Agreeing that you will not "put someone" in a nursing home may close the door to the right care option for your family. It requires you to know that no matter what happens you will be able to care for your parent. The fact is that for some illnesses, and for some people, professional health care in a long-term care facility is the only reasonable choice.

When faced with a parent who is truly ill or frail, long-distance caregivers may find that some promises hamper their ability to do what is necessary, either for their own health, or for their parent's. Many people discover too late that the promises they made ("Of course you will be able to die at home.") cannot be kept.

Try to focus your commitments on what you know here and now. If asked to make a promise, you could say something like, "Dad, I will make sure you have the best care we can arrange. You can count on me to try and do what's best for everyone. I can't think of a situation where I'd walk out on you." Base your promises and decisions on a realistic assessment of the current situation or diagnosis, and realize that you may need to revisit your agreement. Your father's situation might change. Your situation might change. You truly do not know what will happen in the future - disease and illness can lead to enormous changes. And, of course, it's not only your parent's health that changes - your own health may alter over time, too.

If you've already made a promise to a parent, remember you can bring the subject up again; you can change your answer to something more specific, something you feel you can undertake. As hard as that conversation might be, it may be better than risking the guilt of a promise not kept.

How is it that long-distance caregiving makes me feel so guilty all the time? I thought being so far away would be easier than this.

You might think that being far away gives you some immunity from feeling overwhelmed by what is happening to your parent - but long-distance caregivers report that this is not so. Although you may not feel as physically exhausted and drained as the primary, hands-on caregiver, you may still feel worried and anxious. Many long-distance caregivers describe feeling terribly guilty about not being there, about not being able to do enough or spend enough time with the parent. Remind yourself that you are doing the best you can given the circumstances, and you can only do what you can do.

If you are like most long-distance caregivers, you already have many people who rely on you: Your spouse, children, perhaps even grandchildren, as well as friends, coworkers, and colleagues. Adding one more "to-do" to your list may seem impossible.

You may find some consolation or comfort in knowing that you are not alone. Many people find that support groups are a great resource and a way to learn caregiving tips and techniques that work - even from a distance. Others find the camaraderie and companionship helpful. Some enjoy meeting monthly or weekly, while others find what they need in online support groups. The Eldercare Locator may be able to help you find a local group.

How can I be sure that my father's caregiver isn't mistreating him? Everything has been fine so far, but I'm worried that as his mental status deteriorates, something harmful might happen.

From a distance, it can be hard to assess the quality of your father's caregivers. Ideally, if there is a primary caregiver on the scene, he or she can keep tabs on how things are going. Sometimes a geriatric care manager can help. You can stay in touch by phone and take note of any concerns that might indicate neglect or mistreatment. These can happen in any setting, at any socioeconomic level. They can take many forms, including domestic violence, emotional abuse, financial abuse, and basic neglect.

The stress that may happen when adult children care for their aging parents can take a toll on everyone. In some families, abuse continues a long-standing family pattern. In others, the older adult's need for constant care can cause a caregiver to lash out verbally or physically. In some cases, especially in the mid-to-late stages of Alzheimer's disease, the older adult may become physically aggressive and difficult to manage. This might cause a caregiver to respond angrily. But no matter what the cause or who is the perpetrator, abuse and neglect are never acceptable responses.

If you feel that your parent is in physical danger, contact the authorities right away. If you suspect abuse, but do not feel there is an immediate risk, contact someone who can act on your behalf: your parent's doctor, for instance, or your contact at a home health agency. Suspected abuse must be reported to adult protective services.

Elder Mistreatment

Elder mistreatment is the intentional or unintentional hurting, either physical or emotional, of an older person. Some signs to watch for:

• Bruises, pressure marks, broken bones, abrasions, and burns may indicate physical abuse, neglect, or mistreatment.
• Unexplained withdrawal from normal activities, a sudden change in alertness, and unusual depression may indicate emotional abuse.
• Sudden changes in financial situations may be the result of exploitation.
• Bedsores, unattended medical needs, poor hygiene, and unusual, unexplained weight loss can indicate neglect.
• Behavior such as belittling, threats, and other uses of power and control by spouses may indicate verbal or emotional abuse.
• Strained or tense relationships, and frequent arguments between the caregiver and older person can indicate mistreatment.

If your parent is in a long-term care facility, the facility must take steps to prevent (and report) abuse. Nursing homes, like hospitals, are subject to strict State licensing requirements and Federal regulations. Even so, neglect and abuse can occur. For more information, contact the National Center on Elder Abuse.

Signs of Self-Neglect

Self-neglect describes situations in which older people put themselves at high risk. People who neglect themselves may have a disorder which impairs their judgment or memory. They may have a chronic disease. Knowing where to draw the line between self-neglect and a person's right to independence can be hard. Here are some signs that may mean it's time to intervene:

• Hoarding
• Failure to take essential medications or refusal to seek medical treatment for serious illness
• Leaving a burning stove unattended
• Poor hygiene
• Not wearing suitable clothing for the weather
• Confusion
• Inability to attend to housekeeping
• Dehydration

About the Author

www.nia.nih.gov
NIA, one of the 27 Institutes and Centers of NIH, leads a broad scientific effort to understand the nature of aging and to extend the healthy, active years of life. In 1974, Congress granted authority to form NIA to provide leadership in aging research, training, health information dissemination, and other programs relevant to aging and older people.