AAAs. See Area Agencies on Aging

abandonment, 20, 178

Abrams, Creighton, 170

abuse, 19–20, 115–16, 128, 174, 178, 219

activities of daily living (ADL), 72, 126, 137

adult day health care, 149

advance directive for health care, 45

aging, 9, 62

attitudes toward, 100–104

mental changes, 65–66, 86–92

physical changes, 92–99

Aid and Attendance Benefit (VA), 35, 82, 162–63

ALS (Lou Gehrig’s disease), 211

Alzheimer’s Association, 10

Alzheimer’s disease, 66–67, 86, 91, 134, 150, 195, 209–11

care communities, 137–38

American Elder Care Research Organization, 165

anger, 11, 100, 172, 177, 191, 194–95, 218, 221, 226

anxiety, 34, 74, 120, 194, 228, 230

Area Agencies on Aging (AAAs), 162–63

arthritis, 62, 97

assisted living, benefits of, 127–35

activities, 132–34

friendships, 132

health care, 134–35

housekeeping, 131

laundry, 131–32

nutrition, 128–30

pets, 132

safety, 129–30

transportation, 130–31

assisted living communities, 135–44, 186, 193, 212, 226–27, 231

costs of, 149

large centers, 142–43

levels of care, 140–42

licensing, 140–42

purpose of, 126

small group homes, 143–44, 193

Assisted Living Federation of America, 136

authority. See legal authority

authority figures, 188–89

bathroom issues, 41–42, 52, 63–64, 76, 220

Beardsley, Mary Jo, 111

bed-bound patients, 217

bedsores, 217

behavioral issues, 20, 208, 218–20, 226, 229

controlling behaviors, 3, 56, 219

dangerous behavior, 1–2, 66, 137, 197, 219

benefitscheckup.org, 23

Boals, Maryglenn, 159

bones, 97–99

boundaries, 41, 56–58, 115–16, 170, 229

brain

brain death, 208

changes in, 65–66, 86–92

degenerative disorders, 1–2, 66

health of, 21

See also dementia; memory loss; mental activity; traumatic brain injury (TBI)

breathing tubes, 214

budgeting, 150–53, 181

Burnett, Carol, 12–13

burnout, 58–59

calendars, 80, 88

cancer, 13, 34, 76, 120–21, 130

care communities, 52–54, 124–44

gathering information on, 180

names for, 149

types of, 135–40

caregivers

burnout, 58–59

challenges of, 5, 39–59

defining, 33–37

family members as, 33–37, 41–44, 69–71, 77–83, 108–110, 174–75, 180, 187–88, 227–29

family responsibilities, 10–13

friendships, 15–16

health of, 33–34, 192

parenting responsibilities, 11–13, 80–81

private caregivers, 114–16, 118–19, 228

proactive behavior, 5, 61–83

relationships with siblings, 13–15

relationships with spouses, 10–11, 18–19, 209, 212

retirement, 82–83

self-care, 33–34, 56–58, 80

seniors bonding with, 227

siblings as, 41–44, 70, 81

stress on, 10, 24, 33–34, 103, 110, 218

work and professional responsibilities, 16–18, 81–82

Caregiver Survival Tips, 8, 36, 59, 83, 103, 145, 165, 188–89, 200–101, 220–21, 232–33

Carter, Rosalynn, 233

Cash and Counseling Program (Medicaid Waiver), 161

catheters, 214, 217

CCRC. See continuing care retirement communities

changes

adjusting to, 191–92, 223–24, 229

in family relationships, 40–44, 47, 69–70, 100–101, 135, 194

mental, 86–92

in personality, 90, 218–20 (see also behavioral issues)

physical, 92–99

See also functional decline; transitions

children

of caregivers, 11–13, 80–81

long-term care for, 204–106

See also parent-child relationships

chores. See housekeeping and chores

cognitive skills, 73, 86–92. See also brain; mental activity

coma, 208

communication, 11, 14, 41, 43, 169–70

competency, 40, 44, 48

compromise, 173, 194–99

computers, use of, 26, 43, 169

concerns. See needs and concerns

conflicts, 14, 41–43, 169–72

confusion, 73–74, 87–88

continuing care retirement communities (CCRC), 138–39

control

legal, 40–41

letting go of, 57, 59, 61

loss of, 2, 29

seniors’ sense of, 48, 50, 53, 178, 196

controlling behaviors, 3, 56, 219

cost of care, 49–50, 82, 187

averages, by type, 148–49

estimates, 179

medications, 23, 164

See also paying for care

Cost of Care Survey, 2022 (Genworth), 148, 151

Covey, Steven R.

7 Habits of Highly Effective People, 102

crisis situations, 1–2, 12, 33, 61–62, 111, 176

avoiding, 78

care during, 123, 140

difficult discussions during, 168, 182, 184

See also emergencies

dangerous behavior, 1–2, 66, 137, 197, 219

death, 31–33, 100

coping with, 54–55

hospice services, 121–24

decision making, 6-7, 40, 107, 173–77, 191–101

about care communities, 142–44

guilt and anxiety over, 223–24, 230–32

legal authority for, 199–100

participation of family members, 169–70

decline. See functional decline

delirium, 66

dementia, 1–3, 134, 199, 210–12, 218, 223, 229

and decision making, 172

stages of, 66–69

symptoms of, 23–25, 89–91

See also Alzheimer’s disease; memory/dementia care communities

denial, 69–71, 74, 173–74, 176, 181, 187, 199

depression, 27–28, 193, 230

dialysis, 215–16

diet, 21, 88–89, 99, 128–30

directed care licensed facilities, 142

discussions, difficult, 6, 167–89

approaching subject of, 184–87

experts, role in, 188–89

family, bringing together, 168–70

locations, 182–83

planning for, 48, 177–81

strategy development, 170–77

timing, 183–84

diseases. See illnesses and diseases

doctors

as authority figures, 31, 188–89

maintaining contact with, 78

See also medical care

documents

on concerns, 178–79

legal or important, 44–46, 78

downsizing, 29–30

driving, giving up, 30–31, 53, 95, 130

durable medical equipment, 214

durable power of attorney, 45, 48

eldercare, overview of, 1–8, 9–10, 33–37. See also caregivers

Eldercare Financial Resource Locator Tool, 165

e-mail, 14, 43, 104, 169

embarrassment, 25, 42, 74, 76, 172, 183, 220

emergencies, 35, 39–40, 44, 57, 71, 118–19, 128, 135, 141–42. See also crisis situations

emotional abuse, 19–20, 219

emotions and feelings, 47, 100–104, 191, 203, 228–30. See also specific emotions

employers, 16–17, 114

exercise, 21–22, 99

exploitation, 20, 115–16, 128–29

eyesight. See vision impairment

Facebook, 43

faith, 104

falls, 51, 72, 94, 96–97, 127, 171, 198, 226

preventing, 21–22

Family and Medical Leave Act of 2001 (FMLA), 16, 82

family relationships, 10–15

changes in, 40–44, 47, 69–70, 100–101, 135, 194

and difficult discussions, 167–72

fears, 30, 86–87, 120, 126, 177–78, 191, 194, 197

feeding tubes, 214, 217

feelings. See emotions and feelings

Fern, Ralph, 112

finances, managing, 47–48, 73. See also cost of care; paying for care

financial exploitation, 20, 128–29

FMLA. See Family and Medical Leave Act of 2001

forgetfulness, 65, 86. See also dementia; memory loss

foundations, financial assistance from, 164

401K plans, 155

friends

in assisted living communities, 132

of caregivers, 15–16

loss of, 29

functional decline, 20–21, 79

difficult discussions about, 167

evaluating, 62–66

mental, 65–66, 86–92

physical, 62–65, 92–99, 150, 176

as reaction to change, 192, 230

Genworth Cost of Care Survey (2022), 148, 151

geriatrics case managers, 50, 79

government programs for financial assistance, 161–64

gratitude, 102–104

grief, 32, 54–55, 100

group homes, 143–44, 193

guardianship, 48, 199–100

guilt, 56, 81–82, 188, 191, 227–28, 230–32

hallucinations, 218

health care. See medical care

health care advocates, 110–12

health-care power of attorney, 45

health care professionals, consulting with, 74–77

health insurance, 75, 111–12, 124, 160

hearing impairment, 94

help, asking for, 5, 36, 43, 81, 103, 107, 193

high-needs care, 203–221

hobbies, 104

home care agencies, professional, 112–13

interviewing, 116–18

home environment, 19, 22, 63, 96

home equity, 156

home health aide services, 149

home health care agencies, professional, 112–13

interviewing, 116–18

homeowner’s insurance, 115

homes, renting or selling, 157–58

hospice services, 121–24

hostile attitudes, 218

Housebound benefit (VA), 162

housekeeping and chores, 178, 181, 197

in assisted living communities, 131

homemaker services, 148

Huntington’s disease, 1–2, 8, 66

hydration, 21, 88–89, 99, 130

hygiene problems, 20, 24, 54, 73, 220. See also showering; toileting

illnesses and diseases, 75–76, 113

hospice services, 121–24

long-term progressive, 211–13

palliative care, 120–21

See also individual illnesses and diseases

Improved Pension (VA), 162

income, loss of, 28–29, 82, 102

incompetence, declaration of, 40

independence, 27, 30, 41, 50, 102, 107, 125, 194

independent living communities, 53, 136–38

information

organization of, 62, 78, 80, 88

research on resources, 179–81, 196

in-home care agencies, 41

insurance, 158–61

employee-related, 114–15

health insurance, 75, 111–12, 124, 160

life insurance, 159

long-term care insurance, 159–60

private, 160–61

investments, 48–49, 147, 155

IRAs, 155

isolation, 25–27, 34, 74, 94, 102

Jacobs, Barry, 80

joints, 97–99

judgment, 73, 199, 225

impaired, 24, 66, 68, 129, 208, 218

kidney disease, 215–16

Laibson, David, 48

large print, 23, 88, 95–96, 98, 133

last will and testament, 45

laundry, in assisted living communities, 131–32

learning, benefits of, 92, 104

legacies, creating, 55

legal authority, 48, 199–100

legal documents, 44–46, 78

Lewy Body disease, 66

liability issues, 114–15

life insurance conversion, 159

lighting, 19, 96

listening, 11–12, 15, 28, 30, 32, 55, 170, 173, 182, 185, 196

assistive listening devices, 94

living arrangements, 50–54. See also care communities; relocation

living will, 45, 48

locked-in syndrome, 208

loneliness, 26, 34, 79, 94, 102, 104, 129, 193, 221

long-distance caregiving, 77–79

long-term care (LTC)

insurance, 159–60

for younger people, 204–106

Long-Term Care (Medicaid), 161

loss, coping with, 54–55

Lou Gehrig’s disease (ALS), 211

LTC. See long-term care

marriage, impact of caregiving on, 10–11, 18–19, 209, 212

MCI. See mild cognitive impairment

meaning, sense of, 101–102

mechanical ventilators, 214

mediation, 43, 169, 200

Medicaid, 82, 147, 161

medical care

appointments, 22, 25, 27, 47, 75–77, 94–96

in assisted living communities, 134–35

managed by caregivers, 46–47

universal medical record, 47

medical devices and equipment, 213–15

Medicare, 147, 158, 160

Hospice Benefit, 124

Supplemental Insurance (Medigap), 160

medications

cost of, 23, 164

medications (continued)

managing, 22–23, 52, 57, 72, 134

risk of falls related to, 22

side effects, 96

memory/dementia care communities, 137–38, 195, 211

memory loss, 67–68, 73, 86–92, 195

evaluating, 65–66

senior moments, 87–89

mental activity, 91–92, 132–34

mental decline, 65–66, 86–92

mental health care power of attorney, 45

mental status testing, 69

micromanaging care, 227

mild cognitive impairment (MCI), 65

mind. See brain

mind/body/spirit connection, 85, 105

minimally conscious state, 208

MLS (muscular dystrophy), 211

mobility issues, 20–21, 63, 104, 126, 141, 162

mortgages, reverse, 156–57

moving. See relocation

multitasking, 87–88

muscles, 97–99

muscular dystrophy (MLS), 211

needs and concerns

assessment of, 69–74, 150–52

choices and options, 36–37, 107–145

documentation of, 178–79

major areas of, 17–28

planning for future, 50–51, 61

neglect, 19–20, 58

nonprofit organizations, financial assistance from, 164

nursing homes, 139, 149, 178. See also skilled nursing communities

nutrition, 21, 88–89, 99

in assisted living communities, 128–30

obsessive-compulsive behavior, 219

organization, 62, 78, 80, 88

orientation, loss of, 90

osteoporosis, 97

ostomy pouches, 214, 217

oxygen tanks, 214, 217

palliative care services, 120–21, 123

paranoia, 218

parent-child relationships, 40–42, 69–70, 135

Parkinson’s disease, 136, 139, 153, 209, 211–13

Participant/Consumer Program (Medicaid Waiver), 161

paying for care, 6, 147–48, 152–64

assistance with, 35, 164

budgeting, 150–53, 181

See also cost of care

payingforseniorcare.com, 165

payroll taxes, 114

personal care issues, 64, 72–73, 178

personal care licensed facilities, 141–42

personality changes, 90, 218–20

personal property, paying for care with, 155

pets, 26, 64, 132, 180

physical abuse, 19, 219

physical decline, 20, 62–65, 92–99, 150, 176

physician’s directive, 45

pill organizers, 23

Pinnacle Care, 47

planning, 39–40

for difficult discussions, 48, 177–81

for future needs, 50–51, 61

power of attorney, 45, 199

prescription drug assistance programs, 23, 164

private caregivers, 114–16, 228

interviewing, 118–19

private funds, 153–56

private insurance, 160–61

proactive behavior, 5, 61–83

purpose, sense of, 101–102

quality of life, 2, 37, 85, 100, 102, 107, 109, 120, 194

rage, 2, 218

religious practices, 104

relocation, 29–30, 175, 186, 191–92, 195, 198–99

reminders, 23, 88, 91, 141

resentment, 43, 58, 110, 221, 227

residential care communities, 135–40

respite, 36

respite care services, 59, 139–40

retirement

by caregivers, 81–82, 209

by seniors, 28–29, 163

retirement accounts, 49, 147, 153–55

retirement communities, 53, 138–39

reverse mortgages, 156–57

roles, caregiving, 46, 167

designating, 43

routines, 79, 88, 191, 218, 225

safety, 17–20, 63, 71, 115–16, 127–28, 178–79, 197

in assisted living communities, 129–30

sandwich generation, 80–81

savings, 82, 147, 153–55

seizures, 207–208

Self-Directed Program (Medicaid Waiver), 161

senior moments, 87–89

seniors

decision making, 40–41, 44, 48, 73, 170–72, 195–99

resistance to care, 172, 177, 182, 187–88, 196–99, 229

sense of control, 48, 50, 53, 178, 196

7 Habits of Highly Effective People (Covey), 102

sexual abuse, 20, 219

showering, 41–42, 220

siblings

as caregivers, 41–44, 70, 81

and difficult discussions, 170–77

skilled nursing communities, 139, 149, 209

Skype (telecommunication software), 26, 169

sleep, 20–21, 26, 54, 89–90, 120

socialization, 25–27, 74, 104, 181, 193

social media, 26, 43

Social Security, 163–64

special considerations for care, 7, 203–221

spiritual well-being, 100–104

SSI. See Supplemental Security Income

stress, 47, 61, 230

on caregivers, 10, 24, 33–34, 56, 110, 218, 221

managing, 21, 56

strokes, 53, 150, 197, 212

suctioning equipment, 215

suicidal thoughts, 221

supervisory care licensed facilities, 140–41

Supplemental Security Income (SSI), 164

supplements, 99

risk of falls related to, 22

side effects, 96

swearing, 1, 218

taxes, payroll, 114

TBI. See traumatic brain injury

time management, 80, 215

toileting, 36, 41–42, 52, 64, 76, 137, 149, 151, 159

tracheotomy tubes, 214

transitions, 111, 223–30

managing life transitions, 28–33

mistakes during, 225–29

transition period, defined, 224–25

transportation, 27, 130–31

in assisted living communities, 130–31

See also driving, giving up

traumatic brain injury (TBI), 22, 206–210, 218

unemployment insurance, 114

universal medical record, 47

VA. See Veterans Affairs

vacations, 36, 83, 119, 140

vegetative state, 208–209

ventilators, 214

Veterans Affairs (VA)

Aid and Disability Benefit, 82

Veterans Affairs (VA) benefits, 35, 82, 154, 161–63

violence, 2–3, 207, 219

vision impairment, 94–96, 133

use of large print, 23, 88, 95–96, 98, 133

Volk-Craft, Barbara, 122

volunteering, by seniors, 29, 104

volunteer services, 49, 124, 153–54

Waivers (Medicaid), 161

Wandrych, Rick, 157

warning signs, early, 62–66, 125–26, 181

weight loss, 69, 74, 128, 130

wills, 45

workers’ compensation, 114–15

worry, 65, 178, 221, 231

yelling, 1, 19, 176, 195, 218

younger people, long-term care for, 204–106