When Someone You Love¿ Book

Preface	XV
1. The Invisible Army	1
Nursing home myths and misperceptions
Stereotype #1: Nursing homes are warehouses for
unwanted people
Stereotype #2: All nursing home residents are
senile or demented
Stereotype #3: Nursing home residents have few
legal rights
Stereotype #4: Families have little say in the
treatment
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
Plan ahead
Get advice
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?
Physical changes
Perceptual changes
Cognitive changes
Psychologicalchanges
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
Emotional signs
Physical symptoms
Cognitive signs
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
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
Psychological symptoms
Financial signs
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
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
5	Choosing the Right Placement Setting: Thinking Clearly in
the Midst of Chaos	66
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?
6	Leaving Home for the Nursing Home: Preparing for the
Dreaded Day	91
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
7	Anxiety, Anger, Fear, and Guilt: Adjusting to the New
Situation	110
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
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
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
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
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?
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
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
11. When Things Get Better: The Transition Back Home	191
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
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?
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
Checklists, Worksheets, and Resources	235
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
About the Authors	270