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Author Biography: Robert F. Bornstein, currently Professor of Psychology at Gettysburg College, has published more than 100 articles and 30 book chapters on psychological diagnosis, testing, and treatment. His research has been funded by grants from the National Institute of Mental Health and the National Science Foundation. He works and lives in Gettysburg, Pennsylvania. Mary A. Languirand co-authored The Thinking Skills Workbook, a pioneering treatment manual for cognitive remediation in older adults, as an undergraduate at the University of Massachusetts, in the 1970s. Now in full-time private practice in Gettysburg, Pennsylvania, where she resides, Dr. Languirand continues to provide direct service to older adults and their families, as well as offering consultation and training to mental health professionals.
The Invisible Army
Driving home from work, Patricia felt terrific. Business was picking up, and after two tough years, she was finally turning a profit. The kids were healthy, Jim was well, and the holidays were just around the corner. By this time next week the house would be full of people—Mom, Elizabeth, Jim's parents and brother, Andrew back from college for his first visit home. Patricia smiled to herself, turned up the radio. All her hard work, all her planning, was finally paying off.
When Patricia pulled into the driveway, she knew right away that something was wrong. She could see Elizabeth's face in the window, and as the headlights flashed across the house, her daughter turned away. When Patricia reached the door, it was already open. Elizabeth stood there, eyes wide with fright.
"Mom, Nana's sick. The hospital just called."
Patricia felt a chill run down her back. "When?" she asked. Her voice was barely a whisper.
"Just now. Just a minute ago. Right before you got here."
Patricia felt dizzy. She took a deep breath. She stood still for a moment, trying to comprehend. Her mother, sick? How? What happened?
Twenty minutes later, she arrived at the hospital. It was chaos: phones ringing, people rushing everywhere, a loudspeaker squawking, an automatic door shushing open and shut. Patricia made her way to the desk and explained why she was there. The nurse looked puzzledfor a moment, then she seemed to relax. When she spoke her voice was soft, reassuring.
Her mother, the nurse explained, had fallen in the bathtub and broken her hip. They were taking X rays now, and then they would set it. After that Patricia could go up and see her. It might take a while, so maybe Patricia should get a cup of coffee or something to eat. They'd call her when her mother was ready.
Patricia sat and waited, paced and fretted, then sat and waited some more. Hours passed. Finally, they called her in....
By the time Patricia got home, it was past midnight. She was scared and tired and very confused, with a million questions and no good answers. Was Mom going to be OK? What did they mean, "hook up with Social Services"? What's a rehab center, anyway, and how do ! find one? How am I going to pay for all this? What if I can't pay for it? Will I lose the business? The house?
Patricia sat in her car and sobbed. All my planning, she thought, all my hard work, and now it's gone, it's all falling apart. What do I do now? Where do I go from here?
It took Patricia a few minutes to pull herself together. She stayed in the car until her tears had dried and her breathing had returned to normal. Then she went inside. She and Jim had a lot of talking to do.
* * *
Does this sound familiar? If your experience is anything like Patricia's, then like her, you've been drafted into an "invisible army," now thirty million strong and growing. Members of this army aren't soldiers; they're caregivers. They come from all walks of life—young and old, rich and poor, married, single, widowed, and divorced, and from every religious and ethnic background. Members of this army are all very different, but they have one thing in common: a loved one who may soon need nursing home care.
What brought you to this invisible army of caregivers? Was it a frail and aging parent who fell in the tub? A confused spouse who can no longer remember to turn off the stove—no matter how many times you remind her? A sibling, perhaps, who can't drive anymore, and with no one to turn to but you?
We don't have to tell you this is not an easy time to be a caregiver. Years ago, your job would have been easier. For one thing, people didn't live nearly as long as they do today, and far fewer people spent time in nursing facilities. Ailing family members were generally cared for at home back then, and the number of out-of-home care options was far more limited. Choices were few and decisions relatively simple.
Advances in medicine have made things much more complicated for caregivers, because seriously ill family members often live for many years. Medicine has been a blessing, but it creates some new responsibilities as well—responsibilities that fall upon people like you, the son or daughter, wife or husband, sister or brother, nephew or niece, who wants only the best for the person you love.
Welcome to the invisible army.
Nursing Home Myths and Misperceptions
* * *
We know a woman who put a caveat in her will. The caveat stated that if either of her sons ever placed her in a nursing home, that son would inherit nothing.
This woman's fear is understandable, of course: Who among us wants to spend time in a nursing home? But what a mistake she made! She might as well have put a line in her will that said, "I expressly forbid my sons from getting me the best care possible if I ever become seriously ill."
It sounds silly when you say it that way, so why would our friend have done this? Probably because she has a vivid, frightening image in her mind of what nursing homes are like. Filthy hallways, horrid food, crazy people wandering about. Incompetent doctors and sadistic nurses. No privacy. No dignity. Left to die alone.
Chances are, your loved one has a similar image in his or her mind. Maybe you do, too. But this image is inaccurate. It's based on myth, misperception, and stereotype. And if you or your loved one make decisions about nursing home care based on myth and misperception, you're liable to make very bad decisions.
Let's take a look at these stereotypes, and see where they're wrong.
Stereotype #1: Nursing homes are warehouses for unwanted people
Fact: It's true that some nursing home residents receive no visitors at all, but this is the exception, not the rule. Most residents have friends and relatives who call and visit regularly, usually once a week or more. Most nursing homes are more like hospitals than warehouses (and some cutting-edge nursing homes actually look more like cottages than hospitals—a real improvement from the residents' perspective).
Stereotype #2: All nursing home residents are senile or demented
Fact: Just over half of the people in nursing homes (about 53 percent overall) have some form of dementia—significant impairment in thinking and memory. The rest of the residents are usually alert and oriented. Many nursing home residents continue to manage their property and finances, participate in hobbies and religious activities, and have an active social life.
Stereotype #3: Nursing home residents have few legal rights
Fact: Nursing home residents have the same legal rights as any other United States citizen. Unless their medical condition dictates otherwise, a nursing home resident may vote, drive, interact with whomever he or she wishes, own property, and bear arms (although guns are rarely stored on nursing home grounds). Residents also have a number of rights specifically related to the nursing home and its staff. (We discuss these in detail in Chapter 8.)
Stereotype #4: Families have little say in the treatment
Fact: Family members are almost always invited to take part in care plan meetings, and family members are always consulted when a major decision is made. Family members are encouraged to take part in events at the facility—celebrations, holiday dinners, and so forth. All too often, it's the family that shuts out the facility, not the other way around.
Stereotype #5: Nursing homes only offer basic care—no frills required
Fact: Nursing homes are required by law to offer a safe, homelike environment and to address a vast spectrum of resident needs. The key word here is homelike. Nursing homes must provide entertainment, social interaction, exercise, access to religious services, transportation off-grounds, and privacy for personal matters (including an active sex life for residents who wish for such).
Stereotype #6: Only selfish, lazy people put family
members in nursing homes
Fact: When people require skilled nursing care, their medical needs are beyond the abilities of even the most devoted family member. Unless you have experience in caring for seriously ill patients, and you can somehow maintain a twenty-four-hour vigil seven days a week, you won't be able to handle things on your own. Those who want their loved one to get the best care possible are neither selfish nor lazy—they're realistic. They know that when the situation is serious, the only way their loved one can get proper care is in a skilled nursing facility.
A Framework for Caregiving
* * *
Knowing what nursing homes are really like will help you make better decisions about your loved one's care, but remember: Accurate information is just one part of effective caregiving. Effective caregiving also requires a long-term plan—a framework that guides your thinking and helps you apply the information you've acquired.
Our framework for caregiving is based on six principles:
Get others involved
Keep colleagues informed
Take care of yourself
Put things in perspective
Let's see how these principles come into play during the caregiving process.
It's tempting to avoid difficult issues, especially those related to health care and long-term financial planning. Resist this temptation. If you take a proactive approach, addressing difficult issues early in the game, you can prevent them from escalating into emergencies. Ill-planned, last-minute solutions to complex health and financial problems rarely work out well.
If you don't understand something, ask. People who have already been through this can be a great source of advice and comfort. So join a support group. Talk to doctors, nurses, and mental health professionals. When legal and financial concerns arise, speak with an attorney, accountant, or financial planner. Contact your local agency on aging or one of the organizations listed at the end of this book. No one can be an expert in everything, but the wise caregiver knows what she doesn't know and seeks advice from those who do.
Get others involved
Caregiving works best when the burden is shared. Brothers, sisters, nieces, nephews, co-workers, neighbors, friends—everybody can pitch in and do something, large or small. And don't be afraid to ask for help from a family member whose schedule seems full. We're all busy. You are too. Those who want to make time, will. Those who don't, won't. But you'll never know unless you ask.
Keep colleagues informed
You might feel strange sharing private concerns with your boss or co-workers, but by doing so you'll help your colleagues understand your situation. Studies show that the average caregiver misses five days of work each year to carry out caregiving responsibilities; many caregivers miss a lot more than that. Don't make a difficult problem worse by leaving your co-workers in the dark.
Take care of yourself
If you neglect your own needs, you'll become stressed. You won't think clearly, and you'll make bad decisions. One key to good caregiving is to take good care of yourself, both physically and emotionally. We discuss a variety of proven stress management techniques in Chapter 2.
Excerpted from When Someone You Love Needs Nursing Home Care by Robert F. Bornstein, Ph.D. and Mary A. Languirand, Ph.D.. Copyright © 2001 by Robert F. Bornstein, Ph.D., and Mary A. Languirand, Ph.D.. Excerpted by permission. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
|1. The Invisible Army||1|
|Nursing home myths and misperceptions|
|Stereotype #1: Nursing homes are warehouses for|
|Stereotype #2: All nursing home residents are|
|senile or demented|
|Stereotype #3: Nursing home residents have few|
|Stereotype #4: Families have little say in the|
|Stereotype #5: Nursing homes only offer basic|
|care—no frills required|
|Stereotype #6: Only selfish, lazy people put|
|family members in nursing homes|
|A framework for caregiving|
|Get others involved|
|Keep colleagues informed|
|Take care of yourself|
|Put things in perspective|
|2. When Someone You Love Just Can't Make It Alone: Signs||10|
|and Symptoms, Strategies and Solutions|
|Common signs of functional decline|
|What factors contribute to functional decline?|
|Distinguishing temporary decline from long-term deterioration|
|Seeking a diagnosis and beginning treatment|
|Learning about the illness and planning ahead|
|Considering psychological factors|
|Getting your loved one to see the doctor|
|Getting your loved one to see a mental healthprofessional|
|The emotional side of caregiving: Changing roles|
|The adult child's perspective|
|The spouse's perspective|
|The sibling's perspective|
|Caregiver stress and its effects|
|Coping with stress before it overwhelms you|
|3. In-Home Care: Autonomy, Continuity, and a Bit of Extra Help||30|
|Finding and funding good in-home care|
|Who may provide in-home care?|
|Certified home health care agencies|
|How to evaluate an agency or provider|
|Questions to ask the agency|
|Questions to ask the independent provider|
|Questions to ask former clients and their families|
|Caregiver qualities you'll have to assess yourself|
|The trial period|
|When problems arise during in-home care|
|Important warning signs of a poor home-care worker|
|Confronting a poor caregiver|
|Signs of abuse, neglect, or exploitation|
|Reporting abuse, neglect, or exploitation|
|4||When In-Home Care Becomes Impossible: Screaming, Crying,|
|Fighting ... and Moving On||48|
|Talking about options with other family members|
|Beginning the discussion|
|Turning thoughts into actions|
|Raising the issue with the care receiver|
|Who should participate?|
|Where should you meet?|
|When should you do it?|
|Common care receiver objections|
|Recognizing and accepting the person's fears|
|Developing a partnership with the care receiver|
|When your loved one is determined to disagree|
|The concept of competency|
|If you're in charge|
|5||Choosing the Right Placement Setting: Thinking Clearly in|
|the Midst of Chaos||66|
|Varieties of placement settings|
|Assisted living facilities|
|Skilled care facilities|
|Continuing care communities|
|Obtaining information about a specific setting|
|Getting technical ratings|
|Talking to administrators|
|Talking to residents and their families|
|Inspecting the facility|
|The physical setting|
|Funding: Who pays for what?|
|Long-term care insurance|
|What if we run out of money?|
|Must the nursing home get it all?|
|6||Leaving Home for the Nursing Home: Preparing for the|
|Discussing last-minute fears and concerns|
|Avoiding last-minute surprises|
|What to pack (and leave behind)|
|Last will and testament|
|Power of attorney|
|Banking, bills, and taxes|
|Preparing the house|
|If the house will be unoccupied|
|If someone will remain in the home|
|7||Anxiety, Anger, Fear, and Guilt: Adjusting to the New|
|Common reactions to placing a family member in a nursing home|
|Adjusting to the nursing home: The patient's perspective|
|The settling-in period|
|Building new routines in a changing relationship|
|Visits in the nursing home|
|The rhythm of the nursing home|
|Timing of visits|
|Length of visits|
|Who should go?|
|What should you do?|
|The off-grounds pass|
|Leaving and returning: Practical considerations|
|Getting out the door (and back in at the end)|
|Staying connected between visits|
|Contact by mail|
|Establishing a communication routine|
|8||Confrontation or Partnership—It's Up to You: A|
|Down-and-Dirty Guide to Nursing Home Politics||130|
|Nursing home staff: The cast of characters|
|Therapies and ancillary services|
|Housekeeping and maintenance|
|Allied and support services|
|Admissions, billing, and human resources|
|Interfacing with staff: Your arenas of influence|
|Admission review meetings: Where plans are formed|
|Care plan meetings: Where decisions are made|
|Resident and family councils: Where concerns are voiced|
|Interactions with caregivers: Where family|
|and staff connect|
|Constructive interventions: How to get what you want|
|(and be loved while you're doing it)|
|When complaining is the only way|
|Legal rights of residents|
|Legal rights of family members|
|9||Old Age Ain't for Sissies: Late-Life Medical Problems and|
|How to Deal With Them||151|
|The aging body: Different parts work at different speeds|
|Some processes slow as we age|
|Some processes accelerate as we age|
|Some things never change|
|Common medical problems in nursing home residents|
|Dementias and other neurological syndromes|
|Vascular and cardiac diseases|
|Metabolic and endocrine diseases|
|Diseases of the eye|
|Renal and urinary disorders|
|Why treat it if you can't make it better?|
|10||A Realistic Approach to Behavior Problems: No More Peeing|
|in the Petunias||171|
|Behavior problems: Causes and treatments|
|Common behavior problems in nursing home residents|
|Insulting and accusing others|
|Repetitive questioning and repetitious behavior|
|Refusing to eat|
|Inappropriate sexual behavior|
|Hidden factors that set the stage for problems|
|The wrong neighbors|
|Knowing when to call in the experts|
|Signs that a quick response is needed|
|What you should do|
|What staff will do|
|The suicidal nursing home patient|
|What to look for|
|What to do|
|Maintaining a good relationship with the troubled loved one|
|Tips for adult children|
|Tips for spouses|
|Tips for siblings|
|11. When Things Get Better: The Transition Back Home||191|
|Discharge planning meetings|
|The nuts and bolts of discharge: Three key tasks|
|Establishing current level of care needs|
|Determining the appropriate setting|
|Establishing follow-up services|
|Legal and financial arrangements, revisited|
|Social Security and its limitations|
|Making the home safe and secure|
|Orienting cues and memory aids|
|12. When It's Time to Let Go: Hospice and Beyond||211|
|The pros and cons of aggressive interventions|
|Arguments in favor of aggressive end-of-life care|
|Arguments against aggressive end-of-life care|
|The hospice option|
|What is hospice?|
|What can hospice do?|
|Who is eligible for hospice?|
|Emotional reactions to the end of life|
|The patient's perspective|
|The family's perspective|
|Physical changes at life's end|
|Grieving your loss|
|Epilogue: You've Come This Far and You've Survived||230|
|Checklists, Worksheets, and Resources||235|
|Home Health Care Comparison Checklist|
|Nursing Home Comparison Checklist|
|Personal Documents and Papers|
|What to Bring to the Nursing Home|
|Records a Nursing Home May Request|
|Monthly Income and Expenses Worksheet|
|Calculating a Person's Net Worth|
|Resource and Contact Information|
|Agencies on Aging Contact Information|
|Eldercare Products and Services|
|Home Care Agency Contact/Accreditation Information|
|Long-Term-Care Ombudsman Contact Information|
|Medicare, Medicaid, and Other Insurance Information|
|Mental Health Information|
|National Organizations/Advocacy Groups Related to Aging|
|Nursing Home Contact/Accreditation Information|
|Physical and Occupational Therapy|
|About the Authors||270|