When Someone You Love Needs Nursing Home Care

by Bornstein, Robert F.

• ISBN13: 9781557044730
• ISBN10: 1557044732
• Edition: 1st
• Format: Hardcover
• Copyright: 2001-11-01
• Publisher: Newmarket Pr

Summary

From two distinguished psychologiststhe only all-in-one, bottom-line, no-nonsense guide with practical advice about all aspects of nursing home care (medical, psychological, legal, and financial) to help spouses, siblings, and adult children negotiate the complexities of today's nursing home jungle. Written specifically for the adult child of aging parents and for the older adult whose spouse or sibling may need to spend time in a nursing home, this book guides readers gently but firmly through the entire caregiving and placement-seeking process, from the earliest stages of illness onset, through the nursing home experience, and beyond. Conversational in tone and meticulously organized, When Someone You Love Needs Nursing Home Care is a fact-based, interactive, user-friendly guide to the complex issues that can confront the person whose ill or aging family member can no longer make it on their own. Twelve chapters cover the full range of concerns, including: Recognizing signs and symptoms; in-home care; when in-home care becomes impossible; choosing the right placement setting; preparations to leave home; adjusting to the new situation; nursing home politics; late-life medical problems and how to deal with them; problem behaviors; transitions back home; hospices; caregivers survival. Phone and Internet information is provided throughout the book, with emphasis on the Internet for its 24-hour accessibility.

Table of Contents

Preface	xv
The Invisible Army	1	(9)
Nursing home myths and misperceptions
Nursing homes are warehouses for unwanted people
All nursing home residents are senile or demented
Nursing home residents have few legal rights
Families have little say in the treatment
Nursing homes only offer basic care---no frills required
Only selfish, lazy people put family members in nursing homes
A framework for caregiving
Plan ahead
Get advice
Get others involved
Keep colleagues informed
Take care of yourself
Put things in perspective
When Someone You Love Just Can't Make It Alone: Signs and Symptoms, Strategies and Solutions	10	(20)
Common signs of functional decline What factors contribute to functional decline?
Physical changes
Perceptual changes
Cognitive changes
Psychological changes
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 health professional
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
Emotional signs
Physical symptoms
Cognitive signs
Coping with stress before it overwhelms you
In-Home Care: Autonomy, Continuity, and a Bit of Extra Help	30	(18)
Finding and funding good in-home care
Who may provide in-home care?
Certified home health care agencies
Independent providers
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
Physical symptoms
Phychological symptoms
Financial signs
Reporting abuse, neglect, or exploitation
When In-Home Care Becomes Impossible: Screaming, Crying, Fighting...and Moving On	48	(18)
Talking about options with other family members
Beginning the discussion
Exploring possibilities
Building consensus
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
Excuses
Guilt-tripping
Threats
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
Choosing the Right Placement Setting: Thinking Clearly in the Midst of Chaos	66	(25)
Varieties of placement settings
Senior communities
Group homes
Assisted living facilities
Skilled care facilities
Long-term care
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
The milieu
The intangibles
Funding: Who pays for what?
Medicare
Medicaid
Medigap insurance
Secondary insurance
Long-term care insurance
Veteran's benefits
What if we run out of money?
Must the nursing home get it all?
Leaving Home for the Nursing Home: Preparing for the Dreaded Day	91	(19)
Psychological preparations
Discussing last-minute fears and concerns
Avoiding last-minute surprises
What to pack (and leave behind)
Clothing
Toiletries
Familiar items
Orienting cues
Legal preparations
Last will and testament
Advance directives
Power of attorney
Funeral arrangements
Financial preparations
Budgets
Banking, bills, and taxes
Asset management
Preparing the house
If the house will be unoccupied
If someone will remain in the home
Anxiety, Anger, Fear, and Guilt: Adjusting to the New Situation	110	(20)
Common reactions to placing a family member in a nursing home
Adjusting to the nursing home: The patient's perspective
The arrival
The settling-in period
Long-term adjustment
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
Sign-outs
Equipment
Medications
Getting out the door (and back in at the end)
Staying connected between visits
Telephone contact
Contact by mail
E-mail
Establishing a communication routine
Confrontation or Partnership---It's Up to You: A Down-and-Dirty Guide to Nursing Home Politics	130	(21)
Nursing home staff: The cast of characters
Administrators
Physicians
Nursing staff
Social services
Dietary services
Activities services
Pastoral/Clergy
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
Old Age Ain't for Sissies: Late-Life Medical Problems and How to Deal With Them	151	(20)
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
Cancers
Joint diseases
Skin problems
Vascular and cardiac diseases
Metabolic and endocrine diseases
Diseases of the eye
Pulmonary disease
Renal and urinary disorders
Digestive/elimination difficulties
Why treat it if you can't make it better?
A Realistic Approach to Behavior Problems: No More Peeing in the Petunias	171	(20)
Behavior problems: Causes and treatments
Common behavior problems in nursing home residents
Insulting and accusing others
Wandering
Stealing
Hoarding
Aggression
Repetitive questioning and repetitious behavior
Refusing to eat
Noncompliance
Inappropriate elimination
Inappropriate sexual behavior
Hidden factors that set the stage for problems
Inadequate staffing
Sensory overload
Boredom
Medication 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
When Things Get Better: The Transition Back Home	191	(20)
Discharge settings
Discharge planning meetings
Staff input
Family input
Resident input
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
Legal (re)arrangements
Financial (re)arrangements
Social Security and its limitations
Making the home safe and secure
Accessibility
Injury prevention
Security
Emergency preparations
Orienting cues and memory aids
When It's Time to Let Go: Hospice and Beyond	211	(19)
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?
Who pays?
Emotional reactions to the end of life
The patient's perspective
The family's perspective
Physical changes at life's end
Grieving your loss
Immediate reactions
Short-term coping
Long-term survival
Epilogue: You've Come This Far and You've Survived	230	(5)
Checklists, Worksheets, and Resources	235	(29)
Checklists
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
Worksheets
Monthly Income and Expenses Worksheet
Calculating a Person's Net Worth
Medical/Health History
Resource and Contact Information
Accessibility/Home Modification
Agencies on Aging Contact Information
Caregiver Resources/Support
Elder Abuse
Eldercare Products and Services
Financial/Legal Resources
Funeral Planning
Health Information
Home Care Agency Contact/Accreditation Information
Hospice Resources
Housing/Assisted Living
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
Tax Information
Veteran's Information/Resources
Index	264	(6)
About the Authors	270

Excerpts

Chapter One

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 puzzled for 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:

• Plan ahead

• Get advice

• 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.

Plan ahead

    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.

Get advice

    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.

(Continues...)

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.