DYING: A Book of Comfort

Companion website about dying, bereavement, loss, grief — and aging with spirit

Managing life for aging and disabled patients

(including adults with Alzheimer's)

All those steps taken to help disabled people become enormously relevant when we are pregnant, are temporarily disabled after an accident (try ­naviga­ting stairs with a broken limb), or begin to experience the surprising number of disabilities that may accrue as we age. Life is different when you can’t see or hear as well or get around with the same physical ease you once had. Luckily many aids and support programs are available. Check them out. If you don’t know where to begin, try the useful directory of topics at Family Village.

• Equipment, services, and advice
• Traveling with limited mobility or other disabilities
• Changing attitudes about disability
• Books about caregiving for elders (and patients with Alzheimer's)
• Organizing and dealing with things and information
• Legal and financial matters


ADVICE, REFLECTIONS, EQUIPMENT, SERVICES

• Abledata (objective information about assistive technology products and rehabilitation equipment available from domestic and international sources)
• AbleGamers (online community for disabled gamers, including gamers with muscular dystrophy, deaf gamers, etc.)
• Abuse and disability (Family Village links)
• Accessible Web page design (for those serving disabled readers)
• Adult diapers, incontinence supplies, bedding, safety equipment, mobility devices, etc. (Parentgiving)
• Advice from a Home Health Aide (by Jane Gross, The New Old Age, New York Times blog)
• Aging Care
• Aging Parents Authority
• Aging Parents Insights (David Solie’s blog on understanding our aging parents and ourselves
• Alzheimer’s Association Carefinder
• Alzheimer's: Tracing the Path from DNA to Dementia (Irene Wielawski interviews Marcelle Morrison-Bogorad about research findings from the Alzheimer's Disease Genetics Initiative)
• Alzheimer’s Reading Room
• Alzheimer’s Store
• Americans with Disabilities Act home page
• America's Best Nursing Homes (U.S. News & World Report -- notice step 1: Decide if a nursing home is necessary)
• Answers for families (Nebraska site that may be generally helpful)
• Assistivetech.net (searchable database on assistive technology (AT) and disability-related information)
• Babyboomer demand boosting universal home design (Realty Times)
• Bathroom design (AARP)
• Bathroom safety checklist (AARP)
• Boomer Tsunami (Judy Steed's excellent Atkinson Fellowship/​Toronto Star series, on issues and aspects of promoting a good life for the elderly)
• Caregiving 101 (Debbie Newsham's blog on trying to stay positive while caring for her father, who has Alzheimer's disease)
• Caring for the Elderly (Jane Gross’s excellent list of resources, categorized as government sites, housing and services, caregiving, legal and financial, end of life, miscellany, advocacy, emotional support)
• Caring Today’s blogs, including Debbie Newsham's My So-Called (Caregiver) Life
• Center for Aging with Dignity (scroll down to find useful articles on various aspects of aging and caregiving, for practical advice on safety concerns with aging drivers, and for insights into grieving)
• CAST (Center for Aging Services Technologies, some useful links for disabled or older people)
• Checklist for safety, lighting, and storage (AARP)
• Dementia Caregiving 101 (two sisters who cared for their mother share their experience and advice)
• Designing a Better Day: Guidelines for Adult and Dementia Day Services Centers by Keith Diaz Moore, Lyn Dally Geboy, and Gerald D. Weisman
• Designing for Dementia (radio interview with Keith Diaz Moore on how the design of living spaces affects the mood and performance of people with dementia)
• A difficult drive in a suit that mimics aging (Vivian Nereim, Boston Globe, 6-18-09)
• The Digital Divide of Disability.NPR's On the Media hosts people from Knowbility, an organization that advocates for technology that allows blind, deaf and otherwise disabled people to use the Internet (and things like AbleGamer video games)
• Disability.gov (online resource for Americans with disabilities)
• Disabled World (disability and health news)
• Disaster preparedness for people with special needs (Red Cross)
• Discussion groups and chat rooms about specific problems (assistivetech.net)
• Doctors say medication overused in dementia (AARP Bulletin)
• Doors, floors, and hallways (AARP’s checklist for accessibility)
• Eldercare locator (you can download their useful booklets on transportation and housing options)
• Everyone Communicates (augmentative and alternative communication, for when a person loses the ability to speak)
• Family Support 360 Initiative (providing grants to local service providers to help families with developmental disabilities)
• *Family Village (a global community for disability-related resources)
• Finding Activities for Parents with Memory Loss (Cynthia Green, The New Old Age, NY Times blog, 4-6-10)
• Gadgets for Growing Old at Home (John Leland, reporting from the International Consumer Electronics Show in Las Vegas, NY Times)
• How to Choose a Nursing Home (Toby Bilanow, NY Times 3-19-10) and Stressful but Vital: Picking a Nursing Home Walecia Konrad
• How to Choose Between Home Health Care, Assisted Living, and a Nursing Home (Money and Health, Health.com)
• In a Charmed Life, A Road Less Traveled (Layng Martine Jr, "Modern Love" column, NY Times 3-6-09), how love and the help of others help sustain this couple when a car accident makes her paraplegic)
• Increase Mobility, Brighten Your Outlook with Yoga Stephanie Golden on Yoga and Arthritis, Cleveland Clinic Arthritis Advisor, March 2004)
• Independent Living Centers (a directory)
• Independent Living Institute (promoting disabled people’s self-determination)
• International Longevity Center (navigating the age boom)
• KnowItAlz (Alzheimer’s Caregiver Community)
• Leonardo’s Laptop (Ben Shneiderman interview about human needs and computer design)
• Lessons from the Lost. NY Times video story about law enforcement officers learning how to search for missing persons with Alzheimer's or dementia. For the first time, more missing persons are elderly, with dementia, and may not know they are lost. Missing children used to be the main target of searches.
• Lo-Jack SafetyNet (Lo-Jack bracelet allows families to keep track of dementia-driven wanderers via radio signals, from the stolen-automobile recovery company)
• Making Rounds with Oscar: The Extraordinary Gift of an Ordinary Cat by David Dosa (about a cat who senses death and stays to comfort the dying, but also about Alzheimer's and geriatric care and nursing homes and being there, at the end of life)
• MedicAlert + Safe Return (Alzheimer's Association medical bracelet helps when a person wanders or is lost and provides access to vital medical info in time of need)
• Medicare Compare
• Medicare Guide to Choosing a Nursing Home (PDF file)
• Mind Our Elders (Carol Bradley Bursack)
• My Elder Advocate (the meeting place for elderly concerns)
• My So-Called (Caregiver) Life
• National Association of Professional Geriatric Care Managers (NAPGCM) (GCMs can help assess elders' long-term care needs, find them a place to live, and help them navigate the health-care system--for example, hiring private nurses, as needed, for fees that range from $80 to $200 an hour)
• National Clearinghouse for Long-Term Care Information
• *National Library Service for the Blind and Physically Handicapped (Library of Congress, free library program of braille and audio materials circulated to eligible borrowers in the United States by postage-free mail)
• Network of care
• Nursing home checklist (Medicare, what to look for)
• Ombudsmen, by state (federally funded advocates for nursing home patients, who can find latest health inspection reports for a nursing home and tell you how many complaints have been filed about it).
• Ouch! It's a disability thing! (blogs, message boards, podcasts by Mat Fraser and Liz Carr, videos with subtitles, funny computer wallpaper, news reflecting the wider view of life for disabled people)
• OurAlzheimer’s.com
• Program of All-Inclusive Care for the Elderly (PACE), an optional benefit under Medicare and Medicaid that helps older people frail enough to meet state standards for nursing home care stay in their home.PACE offers and manages all the medical, social and rehabilitative services enrollees need to preserve or restore their independence, stay in their homes and communities, and maintain their quality of life. Listen to this interview on Kansas Public Radio about PACE. There is evidence that this new model of care is effective, but it is not yet widely available. Here is a current list of PACE-provider organizations
• SeniorHomes.com
• Sensecam: A Little Black Box to Jog Failing Memory (Yudhijit Bhattacharjee, NYTimes, 3-8-10, on a gadget that may be useful for Alzheimer's patients)
• Small Mercies (Canada's Veterans Independence Program successfully provides assistance with home care instead of facility care)
• Talking Book Program (Library of Congress, answers to frequently asked questions)
• 10 Things to Know About Assisted Living (Jane Gross, NY Times)
• The Way We Age Now (Atul Gawande, The New Yorker, 4-30-07)
• 3GenFamily blog (caring for parents, raising teens, and staying sane)
• Time Goes By (what it’s really like to get older)
• Universal home design (AARP)
• Vocational rehabilitation (fact sheet - pdf format)
• What I Wish I'd Done Differently (Jane Gross, on the four biggest mistakes she made while caring for her mother)
• What to Know If You Are The Boss of a Caregiver (Victoria E. Knight, Wall Street Journal, 3-19-09)
• When You Get Old and Lose Your Car (What happens when elderly parents can no longer drive) PDF or more, from Alphadaughters.com, UK and marketing based but may suggest ideas of how to cope!--scroll down to find link)
• Who Cares? (Federal Trade Commission on sources of information about health care products and services)
• Who Takes Care of Mom? by Francine Russo (Time, 2-1-2010), author of They're Your Parents, Too!: How Siblings Can Survive Their Parents' Aging Without Driving Each Other Crazy
• When Is the Worst Time to Go to the Hospital? (Pauline W. Chen, MD, NY Times 3-18-10)
• Why Hire a Geriatric Care Manager? (by Jane Gross, The New Old Age, New York Times blog)
• Worry-free care for faraway parents (Phyllis Mensh Brostoff, Bottom Line Secrets, on hiring a geriatric care manager)
• The Wrong Care for Dementia Patients (Tara Parker-Pope, Well blog, NY Times)
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Traveling with limited mobility and other disabilities, books on:

• Access Anything: I Can Do That! - Adventuring with Disabilities by Andrea & Craig Kennedy
• Barrier-Free Travel:A Nuts And Bolts Guide For Wheelers And Slow Walkers by Candy B. Harrington (author of 101 Accessible Vacations: Vacation Ideas for Wheelers and Slow Walkers and There Is Room at the Inn: Inns and B&Bs for Wheelers and Slow Walkers
• Rick Steves' Easy Access Europe: A Guide for Travelers with Limited Mobility

Helping Elderly Leave Nursing Homes for a Home (John Leland, NYTimes, 9-18-09)
Reference Guide of Physical Activity Programs for Older Adults: A Resource for Planning Intervention (CDC, PDF file)
What the Last Meal Taught Him (Kim Severson, NY Times, on Thomas Keller's last meal for his father, 10-27-09)
"An individual with a physical or intellectual disability, then, is said to be 'handicapped' by the lowered expectations of society. A person may also be 'impaired' either by a correctable condition such as myopia, or by an uncorrectable one such as cerebral palsy. For those with mild conditions, related impairments disappear with the application of corrective devices. More serious impairments call for adaptive equipment."
~ Disabled World, "The Language and Terminology of Disabiity"

Changing Attitudes About Disability

• Disability Is Natural: Revolutionary Common Sense for Raising Successful Children with Disabilities by Kathie Snow. Check out her website for many other useful resources: Disability Is Natural
• Reflections from a Different Journey: What Adults with Disabilities Wish All Parents Knew , ed. Stanley D Klein and John D. Kemp (40 stories by successful adults who grew up with disabilities
• No Pity : People with Disabilities Forging a New Civil Rights Movement
• National Veterans Wheelchair Games (Dr. Govloop)
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Books about Caregiving for Elders and Patients with Alzheimer's

• The Caregiver's Compass: How to Navigate with Balance & Effectiveness Using Mindful Caregiving by Holly Whittelsey Whiteside (how to apply life coaching principles to stay balanced during the difficult moments of caregiving, based on her own experiences with her mother and as a life coach)
• The Complete Eldercare Planner: Where to Start, Which Questions to Ask, and How to Find Help, revised ed., by Joy Loverde
• The Elder Law Handbook: A Legal and Financial Survival Guide for Caregivers and Seniors
• Elder Care: What to Look For, What to Look Out For!, by Thomas M. Cassidy (which includes, among other things, useful checklists)
• Eldercare 911: The Caregiver's Complete Handbook for Making Decisions by Susan Beerman, Judith Rappaport-Musson
• Eldercare for Dummies by Dr. Rachelle Zukerman
• The Eldercare Handbook: Difficult Choices, Compassionate Solutions by Stella Henry and Ann Convery
• Finding Life in the Land of Alzheimer's: One Daughter's Hopeful Story by Lauren Kessler (weighed down by guilt from her response to her mother's Alzheimer's 8 years earlier, Kessler takes a minimum-wage job as a resident assistant in a facility for Alzheimer's patients--and comes to see the positive side of life for those patients). See also her earlier book Dancing with Rose: Finding Life in the Land of Alzheimer's
• Learning to Speak Alzheimer's: A Groundbreaking Approach for Everyone Dealing with the Disease by Joanne Koenig Coste


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Organizing and dealing with things and information

• The Boomer Burden: Dealing with Your Parents' Lifetime Accumulation of Stuff by Julie Hall
• Don't Toss My Memories in the Trash-A Step-by-Step Guide to Helping Seniors Downsize, Organize, and Move by Vickie Dellaquila
• Get It Together: Organize Your Records So Your Family Won't Have To by Melanie Cullen and Shae Irving
• If Something Happens to Me by Joseph R. Hearn and Niel Nielsen (a workbook to organize legal, financial, and insurance information)
• The Senior Organizer: Personal, Medical, Legal, Financial by Debby S. Bitticks, Lynn Benson, and Dorothy Breininger


LEGAL and FINANCIAL MATTERS

Advance directives, living wills, Medicare, and other practical matters

Disability Planning (ElderLawAnswers)

How to apply for SSI

Long-term care insurance, advice and information about:
• ElderLaw Answers (What to Look for In a Long-Term Care Insurance Policy, When Should You Purchase Long-Term Care Insurance?, How Much Insurance Should You Purchase?, Which Spouse Should Get Coverage?,Long-Term Care Insurance and Medicaid Planning,
Partnership Policies, The Tax Deductibility of Long-Term Care Insurance Premiums, The Taxation of Benefits, Consult With a Qualified Agent, Books on Long-Term Care Insurance)
• National Clearinghouse for Long-Term Care Information U.S. Dept of Health & Human Services
• ResearchLTC (get comparisons of top 10 insurers & policies: Allianz, Bankers Life & Casualty, Genworth Life, John Hancock, MassMutual, MetLife, Mutual of Omaha, New York Life, Prudential, State Farm)
• The Coming Caregiver Crunch and Why This Gerontologist Owns Long Term Care Insurance by Ken Dychtwald, Huffington Post
• Long-Term Care Insurance: The Essentials (free PDF from MetLife, an insurer)
• J.K. Lasser's Choosing the Right Long-Term Care Insurance by Benjamin Lipson
• Long-Term Care: Your Financial Planning Guide by Phyllis Shelton


Nolo online law center (provides legal assistance in preparing documents for elder care)

Social Security cash benefit programs for people with disabilities and parents of children with disabilities

Supplemental needs trusts and planning for disabled children (ElderLawAnswers)
"In the United Kingdom, people within the disability rights movement commonly use the term 'Disabled' to denote someone who is 'disabled by society's inability to accommodate all of its inhabitants.' The Person First Movement has added another layer to this discourse by asking that people with disabilities be identified first as individuals. 'Person First Language' -- referring, for example, to a 'woman who is blind,' rather than to 'a blind woman' - is a form of political correctness designed to further the aims of the social model by removing attitudinal barriers. Some people with disabilities support the Person First Movement, while others do not. People who are Deaf in particular may see themselves as members of a specific community, properly called the Deaf culture, and so will reject efforts designed to distance them from the central fact of their identity."
~ Disabled World, "The Language and Terminology of Disabiity"

“When Hurricane Katrina came in here and had us scattered everywhere, I felt like I was in the world by myself. I felt like God had forgotten about me. I got on my knees to pray; He said, ‘If you are going to pray, don't worry, and if you are going to worry, don't pray.'”
~ From "Words to the Wise, Capturing seniors' stories while she still can, by David Ball (Herald Tribune, 2-10-2010)

"Dementia is the condition that describes diminishing cognitive skills. Alzheimer's — like Parkinson's and vascular disease — is a sickness that causes dementia.
"'Wandering is a behavior that happens mainly as a result of declining cognitive skills,' says Beth Kallmyer, director of family and information services at the Alzheimer's Association in Chicago. 'The loss of memory impacts their ability to discern where they are.' Where they are in the physical world and who they are, in the metaphysical sense — for example, in their personal relationships."
~ Linton Weeks, The Mysteries of Dementia-Driven Wandering (NPR)

"Whereas a stone is the same stone over time because it is the very same lump of matter - or almost, allowing for erosion - and an oak tree is identical with its originating acorn because it is the same continuous organisation of matter, a person is only the same through time if he or she is self-aware of being so. Memory loss interrupts identity, and complete loss of memory is therefore loss of the self."
~Brain science and the search for the self (A.C. Grayling, NewScientist, 3-20-09)

TYLENOL TOXICITY
Pills or medicine labeled acetaminophen, "Tylenol," or "aspirin-free pain relief" may all contain acetaminophen. Combining such drugs is like taking poison: it may kill you or irreversibly damage your liver.

Silver Alerts Help Find Disoriented Elderly (12 states have them -- federal legislation is in the works)
Green Houses Growing in Numbers (small houses for long-term care for frail elders, as alternative to institutional-style nursing homes)
Dying: A Book of Comfort, ed. Pat McNees

“Seldom have I read a book that exudes such comfort, such an embrace of genuine insight, care and support....The book’s gift, and it is a rich treasure for the reader, is that it embraces who we are.... The book can be read cover to cover, or just pick out a page. Something will leap off the page, a story, a quote, a reading, narrative couplings of diverse themes colorfully worded by the author/​scribe, to give you the needed word or embrace....This book needs wide circulation. The bereaved deserve this, and the book will help all of us.”
~ Rev. Richard B. Gilbert, director, World Pastoral Care Center, in Resources Hotline